I haven’t taken the staycation yet because my anniversary was yesterday, Sunday, and I’d planned to start near the end of January. I wanted to finish my novel revisions first too. I had a moment last week where I wondered if perhaps I should’ve planned for an earlier down time. But I got better, and I carried on with revising my novel. And then a funny thing happened.

Saturday went as usual for the day before my anniversary; I was not in a good mood, and fatigue  crushed me until about just after the time of the crash: 6:30 pm. Twenty-four hours to go. Sunday dawned sunny — outside and in me. Was I in some sort of hallucinatory state? Had all my emotions fled, leaving me in neutral? Would the memory sideswipe me later when I was properly awake?

Some years I hadn’t noticed the awful date, but my body and subconscious mind always did, leaving me wondering what was going on until I would finally remember. But that was not what was happening yesterday. I had decided to eat what I wanted to, do what I wanted to, and not pressure myself at all. Pain did burrow into my neck near my shoulder and back, but I used my pain control methods and went about my day. After lunch, I decided I wanted to work on the dialogue of my latest novel. I was still feeling good, emotionally up, and except for the relinquishing pain, physically normal for me. I dove into my novel, took several breaks, munched on chocolate but not much, basked in the sun, ate dinner, and put on my CES device for the evening session. I checked the time about 6:24, and I noticed the time in terms of how much longer to keep the CES on, but it didn’t register as almost the exact time of the crash. I resumed revising dialogue; new futuristic vocab kept flowing into my head. I didn’t remember that twelve years ago, exactly to the minute, I was on Highway 7 about to be pranged.

My body and emotions didn’t remember either.

Wow.

Amazing.

I’m free.

I hope.

The question I have is why now? Why this year? Is it because I’ve restarted physio and my neck is straighter and my lower back in less pain and I feel like my old injuries are being taken care of again, at last? Is it because I have a new neurodoc — a neuropsychiatrist at Toronto Western Hospital — who has referred me to a sleep specialist, is referring me to the guru of acquired brain injury (who, BTW, is booking in 2014!), and is actively guiding me in my psychological, emotional, and cognitive recovery as well as strengthening me in dealing with certain people in community care, not just passively listening and nodding? Is it because I have finished my pre-injury goal (writing and publishing Lifeliner) and my get-me-away-from-this-brain-injury goals (first journey of brain treatment and writing my first two novels plus the screenplay for Lifeliner)? Is it because I’ve written my first true new-me novel? (Brain injury kills the old you; a new you rises from the ashes.) Is it because I am not alone any more in my fight to treat my brain injury and to get back into society, back to working (writing), and I have a health care team of at least three people actively helping me now? Or is it the accumulation of all of those things? I’m not sure. But 2012 is the first year post-injury that doesn’t yaw before me like a never-ending off-course ordeal I must battle alone.

I met with my case manager from COTA (see previous post for the story so far). I told her to get to it; I didn’t even give her a chance for her usual draining chit-chat. I needed my energy to get through the session with her; thankfully my moral anger kicked in to lend me energy and thinking power. I first pried the phone number of the Homemaking service from her by asking her point-blank for it. Later, she justified not giving me the phone number two months ago — she didn’t think she had to give it to me because I already had it, because she thought in that vague way of hers that I had already received help earlier from them. I’m amazed my eyeballs didn’t fall onto the table. I demanded to know why I’d ask for homemaking help if I’d already received it? She repeated she thought I had it. She was thinking of the student who helped me for a few months before quitting abruptly. Not exactly a provincial Homemaking program.

Anyway, after I got the phone number, I asked her for all the information she had gathered to date. Of my list of items, she had three done — sort of. She had a phone number for one; 311 for the second; an information sheet from the City of Toronto for the third. (And, oh yeah, an application for the funding help I’d been receiving for years.) It took her since October 18 to gather that. She said she had to research them on the Internet, that she doesn’t know about these Toronto services.

Her territory is the City of Toronto. She’s been working in this job for at least two years, but she didn’t tell me precisely how many. I do not have esoteric needs.

She also doesn’t know what the Rotary Club offers, which I’ve been told by two doctors and a therapist should’ve been contacted on my behalf for at least one item on my list that she said there was no help for.

As I mentioned in my previous post, she had totally gotten some of my needs wrong. But she denied it. She insisted that she’d gotten my list all correct and hadn’t asked me to repeat any of my needs in a follow-up phone call. She insisted that she had listened (the implication being I’d misspoken — imagine, me, the “articulate one” telling her I needed something I’d been receiving for years). When I informed her of her error last week and what she should’ve been looking into, she didn’t leap to correct it because she “wasn’t at work.” Apparently knowing she was meeting me today was not enough incentive to make things right.

She constantly apologised: “I’m sorry you feel this way.” Would you feel apologised to with those words? Nope, me neither. I finally told her to quit it, that if she was truly apologetic, truly understood how much she’d screwed up, she’d say she was sorry for screwing up. I then lectured her on ehealth and computerization. I have no idea if she took in anything I said. She just sat there. She did intimate at one point she didn’t want to carry a laptop around on the TTC. Good thing all the students and biz folk I see on the subway with their laptops don’t agree with her. They’d get much less done and make errors, as well as spending twice the time on the same task, transcribing pen and paper to computer when they got home or to work. I rhymed off a list of lighter computer devices she could carry with password protection. It made me wonder if any of these people pay attention to the world-shattering Apple launches.

I called her boss. She said she’d talk to the case manager and get back to me. CCAC did not react like this when I called about a disrespectful OT; they believed me — they didn’t say they had to talk to the OT as if to imply they needed verification — and immediately looked for a replacement.

After she left, I needed  a nap. But I stopped myself because I need to sleep at night. However, the rest of my day has been disrupted because as a person with a brain injury, it’s very difficult to refocus. I went from anger to weariness to distractedness to upsetedness. That’s when I called my MPP to see if I could be un-split. Only people with brain injuries — the folks who by the very nature of their injury need things to be simple — are split between COTA and CCAC. As I understand it, no one else is. People with cancer get 100% of their help, including case management, from CCAC. I’m ready to cry over this injustice and unnecessary bureaucracy. I’m hoping by writing this, by venting, I can get back to my day.

Update 4 Jan 2012:

The case manager’s boss called after speaking with the case manager. She wanted to discuss some issues. She wanted to persuade me to continue on with my case manager and was wanting to work things out so that could happen. I cut her off. I wasn’t working with that case manager, and I didn’t want any contact by any means with her. She tried again, and I cut her off again. So then she said there were issues that had to be discussed. There is nothing more upsetting than talking to someone with a sweet, gentle voice who implacably talks to the patient as if they are a problem, and in this case, will not meet the patient’s request for a new case manager unless the patient gets abrupt and brusque and refuses to discuss working with the problem case manager.

She began with miscommunication. If I wasn’t so upset — and one thing she knows as everyone in the brain injury community knows is that people with brain injuries have labile emotions, you never know what you’re going to get — I’d have laughed. She was talking to the person labelled articulate. I am always and immediately labelled as someone who communicates well by every therapist, every rehab person, every psychologist and doctor I’ve ever seen right from 2000 on. Any miscommunication was on my case manager’s part, but by wanting to discuss this with me as an issue, she was implying that my case manager had listened well and got down all the information correctly, thus it was me who had not communicated my needs well, who was the problem. I told her I had no trouble working with anyone else and in communicating my needs to anyone else; everyone but my case manager knows what they are.

She moved on to the issue of computers that my case manager had said I talked about. Basically, if I expected their case managers to have computers or iPhones, I should consider not receiving service from them. They don’t have funding, she said. (Why would a therapist need an agency to fund their own smartphone anyway? In today’s society, every professional should have one regardless, but apparently in the eyes of OTs, not.) Yet my very bringing it up in the first place, then suggesting we discuss it outside of the case manager issue was seen as a reason for me not to receive service from COTA. She told me I have until next week to think about it, to think about whether I wanted to receive service from them or not when she would call me back — next week because the case managers weren’t in the office (not at work?) this week and she wouldn’t be able to find out who’s available to take on my case until they come into the office next week, not that she’s hopeful there would be someone available.

It seems to me that by using that nicest-possible-we’ll-talk-to-you-when-you’re-less-upset voice and suggesting I need a week to think about it, she is threatening to remove services from me if I don’t behave. It isn’t about me having a choice, for COTA is the only publicly funded entity that provides case management services to people with brain injuries, and she knows it. Imagine what effect this would have on an ill or very injured person? They would comply and drop their request. They would put up with bad health care for fear of even that being taken away. And they would not have their needs met plus have their health worsened through the stress of thoughts of abandonment as well as the stress of being forced through gentle, implacable persuasion, to work with someone who doesn’t listen and doesn’t meet their needs.

Update 11 Jan 2012:

On Monday, the COTA case manager boss called and gave me the name of my new case manager. That’s it. Short and sweet. I was so astonished. And relieved. The only strange thing was her reaction to me asking her to spell out the new case manager’s name. I have a hard time understanding names over the phone, and so I’ve gotten into the habit of asking people to spell them out. I usually get an uh, well, never-had-to-spell-out-a-simple J-A-N-E before kind of response. But they do spell it out. She wouldn’t. She spelled out the case manager’s last name but neither spelled out the first name nor repeated it. You’d think someone working in the area of brain injury would be familiar with auditory processing or hearing problems and would not only ensure a clear phone line, but also enunciate names clearly and repeat them slowly. Sheesh.

The new case manager called me today to make an appointment to see me and right off the bat spoke slowly (not loudly, which is what people usually do when asked to speak slowly, much to my ear’s distress) and enunciated every word. It was a bit irritating, but then I told myself I had no — zero, zip, nada — problems understanding every word, including the name. He repeated his name at the end of our conversation without being asked to. How unusual after my recent experience. Hopefully, auspicious.

CCACs vary a lot in quality, I’ve heard. Some believe Toronto’s is better than others, some not so much. I like my CCAC care coordinator and she’s done a good job, albeit requiring one half-hour yelling session over the phone about a disrespectful (and Luddite) OT who was sent to help me organize myself using my handheld device and computer. She sat in her coat, asked stupid questions whose answers were already in my file, and hand-wrote notes. Hand-wrote! The person supposed to be helping me with computer scheduling and GTD (Get Things Done) technology didn’t even have a Palm! I got the feeling that because I had a brain injury — aka I was stupid — that she thought she could treat me however she wanted to and I wouldn’t — because I couldn’t — object. Unfortunately for her, my anger rose up and stimulated me to action. Unfortunately for me, the same has not been true with my COTA Health case manager.

Maybe it’s because COTA Health saps me of all strength. It wearies me. It tires even my anger out. My COTA Health case manager usually costs me half-a-day or more of functionality every time I see her or have contact. Some care.

Side note: Only my CCAC care coordinator comes to my place lugging her work-issued laptop and takes notes on it. Everyone else uses pen and paper for note-taking, even the therapist hand-writes notes during our sessions, the one who my care coordinator assigned me after my yelling session and who has her own smartphone and who dictates her notes into the computer once back at the office. So it isn’t because she’s technologically challenged. It’s the way they do things. Why her office doesn’t issue a light laptop or iPad with password protection for note-taking is beyond me. But I understand that in general OTs, and other therapists, are notorious for not knowing how to use computers in the way those of us with brain injuries must if we are to be functional. It is unacceptable. But they get away with it probably because most of us with brain injuries don’t know how to push them with our outrage into the 21st century.

Community care is supposed to provide people with illnesses or disabilities care in their home, where they can benefit from it the most. People with brain injuries are short-changed in two ways. The first is the same as everyone else: funding has been cut back so much that I’m only entitled to three or four sessions with a social worker, something similar with a physiotherapist, and no care from a psychologist or similar therapist. I could be put on a waiting list for the latter but because I don’t have a serious mental illness and am not about to jump off a bridge, I probably will never see one. As for the other kinds of care available, three or four sessions are barely enough to get going on my needs. I can ask for another series of three. But people with brain injuries have trouble initiating. Initiating once to ask for care is impressive; twice impossible.

The second way we’re short-changed is in time. For example, I’m entitled to something like three or four sessions with a physiotherapist — within four weeks. That means if I need physio every two weeks or three — the time it would normally take for a person who processes information slowly to incorporate exercise suggestions and know how they’re working — I’m out of luck. I had to use my assigned sessions up in four weeks. If I recall right, I didn’t use them all because in the followups I’d stare at him and he at me with me not being able to give any feedback yet on his assigned exercises. It was a waste of my energy and everyone’s tax dollars; yet I could really have benefitted if I’d been allowed to see him a couple of weeks later when my brain had finally managed to spit out feedback. Also, as a person with a chronic condition, I’m not entitled to actual physiotherapy per se, only exercise suggestions. If I had an acute condition, like knee surgery, then I’d be entitled to physio. So if your brain injury causes problems with muscle tone, tough. You don’t get help. Well, unless you can pay someone. The other time issue is that people with brain injuries don’t get miraculously cured in a year or three. I know, I know, there are all these feel-good miracle stories out there. But scratch the surface — or know through your own experience — and you’ll find that it’s all hogwash. Yes, the people in those stories have improved tremendously. But no, they’re not “back to normal.” They’re not fully functional on their own like a healthy, independent adult. They have a lot of help and put a lot of effort in to getting through each day, even with the stupidly simple things like brushing one’s teeth (which reminds me …). Yet the bureaucrats at CCAC think people with brain injuries should be all done like dinner and no longer needing care after a year or so. I wish.

And then there’s my case manager at COTA Health who decided without telling me that I no longer needed her services after a few months. Long story short: About a year and a bit after she disappeared, I ran into her boss. Her boss spoke to her and at the end of September 2011 told me that my case manager would get back in touch with me and apologise for disappearing. (She’d apparently thought she’d discharged me.) And no I couldn’t have a new case manager. Give her another chance, she asked. I wish I’d been as angry at that point as I had been with the disrespectful OT. But I wasn’t. And so I acquiesced. Dumb decision.

Just because I’m smart doesn’t mean I can initiate or stand up for myself, doesn’t mean that that part of the brain that allows us to advocate for ourselves works. It’s anger that gets a person with a brain injury to do move. And it’s sharp focussed moral anger, not the all-consuming brain injury anger, that opens one’s mouth to say this is not acceptable. Family and friends of a person with a brain injury need to help us with correcting a bad situation. And having one conversation with us ain’t going to do it. It sucks having to help, but not prodding in a gentle, wise way sucks more. I think too people who know those with brain injuries need lessons on how to do that. My new neurodoc did tell me a few weeks ago I didn’t have to put up with my case manager, that I could ask for a new one, especially as I had given her a chance. But one conversation with him wasn’t enough to prod me into action. Anyhow, I digress. You see, I just don’t want to deal with my case manager.

Back to October and her apology about a week after I spoke to her boss. In the rare case I’m offered an apology for sucky behaviour, I melt and accept fully. But not hers. I didn’t feel it. Still, I uh-huhed and agreed to meet her. On October 18, she arrived. She wanted to chat; I wanted to get on with it and get her out the door. From what I recall, every now and then, she wrote notes in her not-large spiral-bound notebook, a page of them. As I mentioned earlier, it’s pen and paper in therapy-ville. Given my long list of needs, I’d've expected her to write more, but thought perhaps she writes a lot in a few words. On the other hand, she asked me several times, until I was ready to bite her head off, if I wanted homemaking help. I said yes each and every time.

And that’s what has set me off today.

It is over two months later. I’d asked for homemaking help back in 2010 when the only action I’d received before she disappeared was being enrolled in the Trillium drug plan. She told me no can do to the homemaking back then. But she looked into it again in 2011. We were supposed to meet in early November about how she got on with my needs list, but she called to cry illness and insisted we meet on a day I already had two things planned. After a day of processing and realising that would put me behind the energy eight-ball, I called to say let’s talk over the phone on Remembrance Day instead, that way I would get the info without being infected and drained of energy. On Remembrance Day, she told me that she’d contacted a homemaking service that provides subsidies and they would contact me. She also had questions, questions that indicated to me her note-taking ability was, how shall I put it?, incomplete. I repeated myself from our first meeting. That did not make me a happy camper. She told she would call me the following week.

This is a familiar refrain with my COTA Health case manager: “I’ll call you next week.” But she doesn’t.

Over two weeks later, on November 28, I called her boss, asking where my case manager had disappeared to, wondering if the homemaking service was going to call me, wondering if I’d get help with my heating bills, being as winter was coming on. She said that she’d have her call me, that the case manager’s notes were in the computer, everything seemed to be there — but I didn’t take my own notes and didn’t recall all at once, over the phone, the long list of needs I’d given her, so I couldn’t confirm that in fact my case manager had transferred her pen and paper notes to the computer in the office completely. She asked me again to stick with her. Finally on December 6, I heard from my case manager. Still working on my list. And oh, I probably no longer qualified for the homemaking help. Great. Also: Somewhere along the way my case manager screwed up. Again. She’d added a financial need and dropped a corollary, which I found out for sure today. I had wondered about that when she’d called me on December 6, but I was so ticked and confused about the homemaking, I didn’t take it in. She ended the call with saying she’d call me the following week with more info, maybe we could meet.

So “next week” is December 21. Yes, in the busy week before Christmas she called me. She wanted my email address, which she had but lost, which she wouldn’t have lost if she’d used a netbook or laptop or iDevice or even a smartphone when we met back in 2010. But you know, the therapy community sure likes its pen and paper.

I was steamed. I emailed it to her Friday when I could email her without a long stream of invective. Today, she emailed me back with the info it took her from Oct 18 to discover, hoping we could meet this Friday. Is she kidding me? It’s Christmas week. It’s a friggin’ holiday. Even those of us with brain injuries get to have some down time, some time not having to deal with therapists and doctors and bureaucratic systems. This was my one week of freedom. Apparently not. I guess I should be grateful it took her only, uh, nine weeks total to get the info together. In her email, she also told me I had to call the homemaking service but neglected to include the phone number.

So in a nutshell, my case manager has learnt in just over two months and passed on to me that: the homemaking service was going to call me; the homemaking service considered me unqualified; the homemaking service needs me to call them.

As far as my other needs are concerned, she forgot a few (heating, hydro, transportation, etc.), added a financial break I already have, thinks I may have already received assistance in another (uh, no, else why would I ask?), contradicted my neurodoc in funding being available for one (she says not), and may or may not have gotten one right, I can’t tell. I told her to show up next week. I may need a caseload of chocolate to get through the meeting … assuming it happens.

In one of my conversations with the case manager’s boss, I asked if they had a centralized list of resources, you know, something each case manager could access and look up for their clients without wasting time repeating work others had done, without having to take so long to find the resources a client needs, something easily created and managed on a computer (pre-injury I used to design computer databases). They’d discussed it. Two years ago. This is the standard of rationed community care universally applied for those of us with brain injuries in Ontario, Canada.

As some of you many know, I began my own self-devised hypothalamus treatment in 2010 to try and address a variety of organic problems that resulted from a traumatic brain injury in 2000. One of the nice side benefits was my exercise tolerance slowly improved. Then this past October, I started being able to walk farther. I could walk to nearby places I hadn’t been able to for years. Very liberating — although as is my wont, I kind of overdid it. But that wasn’t the lesson.

NaNoWriMo — National Novel Writing Month — is a month of writing a 50,000-word novel every single day of the month. It’s taxing, both physically (if you’re typing for hours a day) and mentally (for obvious reasons). I had planned my month out carefully. I knew that writing every day would be a huge drain on my mental energy resources. I knew that it would be challenging cognitively. I didn’t figure on any greater duress on my muscles because I don’t write for hours. I don’t have the stamina for it. So I write a lot of words in a little amount of time. But daily writing is physically taxing in an energy sense. By the time I’m done writing, I’m fatigued in every way possible.

I suppose I could pace, but I’ve learned that the way fatigue works for me is that once I stop, it’s very difficult for me to start again and to remember where I was. It’s easier to keep going, feeling the energy drain out of my muscles and my brain, than to stop because then I can complete a chapter and it’s fairly coherent.

This year I wanted to blog on my NaNoWriMo progress, and Google+ provided the absolute easiest way to do it. Just write and press Share. I blogged right after I wrote each chapter (well, after a short snack break after I wrote each chapter) before I forgot the things that had cropped up during that day’s writing. It was probably not the wisest thing to do because it just compounded my fatigue and made it harder to recover. But that wasn’t the lesson.

I began to notice myself getting extremely weak and mentally stalled as the days wore on. I poured everything I had into my writing. Yet I was beginning to wake up so tired, I had barely anything to pour into it. I’d remind myself I wrote Lifeliner when fatigue was much, much worse than now, when it would’ve been impossible for me to write daily. Didn’t help. Then after a couple of weeks of will powering my way through NaNoWriMo and wondering if I’d ever have a scintilla of energy again, it dawned on me that I had not remembered a lesson I’d learned from my brain biofeedback treatment days: mental work is as taxing as exercise to a person with a brain injury. No wonder I was getting short of breath again. No wonder my body temperature returned to burn levels instead of the broil it had been on.

Increasing mental work while not decreasing physical exercise commensurately was a really bad idea.

That was my lesson.

I scaled back my exercise down to 20 minutes (or 10 on some days) from 30, and I didn’t exercise on days I went to physio or to see the doctor. And suddenly my energy rose up enough for me to take some pleasure from my writing and for my days not to be an endless desire for sleep and rest.

I am now scaling back up to my old exercise times, but it’s taking longer than I’d expected. That’s probably because I’m still recovering energy-wise from NaNoWriMo, and the appointments I’d been putting off until December have started. No rest for the weary.

My name is Shireen Jeejeebhoy. And I am a survivor. That sounds a bit like an alcoholic introducing herself at an AA meeting. But my injury was wholly involuntary — I had no say in it. More importantly, alcoholism is known while brain injury and its life-changing aspects is invisible, except in hockey players when they miss games. Yet even then, how much does anyone know about the utter destruction brain injury wreaks on a person and the long, slow journey to a good life?

My journey began in a four-car crash in 2000. I was the front-seat passenger in car number two: three impacts, three back-and-forths of the head, on top of a severe whiplash sustained nine years earlier in another car crash, which may have made me vulnerable to a closed head injury in 2000.

It was eight months before my brain injury was recognized, diagnosed, treated because I had no broken skull, no loss of consciousness.

I entered the world of outpatient neurorehab. Therapists surrounded me with encouragement and advice, cheering on each new accomplishment, even if only for reading a whole page in five minutes. The things that had been trivial had become mighty mountains to climb. It gave a new perspective on the skills acquired in childhood, taken for granted in adulthood, and lost through injury.

But the medical model hit a wall. I need to be able to read and write, to think and synthesize, to concentrate and listen, to see the big picture and remember. My reading problems were not the well-understood ones of being unable to recognize letters and words, but of being unable to read long enough to understand, to remember long enough to add to my current knowledge, and to see the big picture — that is, all that I had read, as I progressed through an article, never mind a book.

The medical model cannot do much to fix higher cognitive functioning issues. But psychologists can. They use computers, brain biofeedback, at-home devices, psychological techniques, breathing, visualization, to name a few techniques, to accelerate brain healing. The brain can heal — we know that from the “miracle” stories of people waking up from decades-long comas — but it’s slow. The key is to stimulate that process. At a basic level, it’s to do what we did as kids: practice. Every day. Without fail. But at a treating level, it’s to see the brain as an electrical organ, not just chemical. Its inputs are eyes, ears, taste, touch, smell. It can be trained to heal itself fuller, faster.

Unfortunately, it’s difficult to achieve that all on one’s own and so long as the survivor and their doctors cling to absolutes about brain injury healing. Yet brain injury let’s people explore new territory and to create stronger, caring bonds with new friends or old working towards a shared goal: reintegration into society and creating a new purpose. Full functioning is not a pipe dream. It’s hard, years-long, but doable.

But from the abysmal brain injury care in Ontario, you wouldn’t know there is an epidemic out there.

When I first joined, I had no idea who was on the Board and who volunteered, even though I had a good sense of who were the active members with brain injuries from falls, meningitis, crashes, tumours (no hockey). Today, members of the Board are making a concerted effort to get out to the meetings and making known who they are. And by the end of the evening, it struck me that like the Board, putting ourselves out there where we live and engaging is what we people with brain injuries need to do.

Everyone knows about cancer; breast cancer is the charity du jour. Half the population suffer from heart disease, and the other half know someone who’s had a heart problem. Rick Hansen has done a stellar job of bringing attention to spinal cord damage, and people in wheelchairs are visible representatives (even if that is not the reason why they must use a wheelchair). But unfortunately brain injuries are invisible, though plentiful.

The Brain Injury Association of Canada says “thousands of Canadians incur a traumatic brain injury each year the majority being young adults.”

And so, as usual, we Canadians must look to the US for detailed stats (and that was true even before Prime Minister Stephen Harper nixed the scientifically sound and comprehensive look at our population, the long-form census). Every year, 1.7 million Americans sustain a traumatic brain injury. Using the ten percent rule, that means 170,000 Canadians have their brains damaged each and every year. And like Americans, twice as many men as women.

As I listened to the reports at the AGM, I thought how daunting the task and how needed to make people aware of brain injury and its devastating effects on the injured. Hockey fans are becoming aware, but only as it applies to hockey players and with incomplete understanding of its lifelong effects.

Sidney Crosby appeared recently with his doctors to talk about his concussion and their expert opinion that when he is one hundred percent better, it will be like he hadn’t had a concussion, that his risk of another concussion will be back to what it was before his two.

Hahahahaha!

How can they know that? There is no technology that can look at the brain in such detail so as to know the brain matter is one hundred percent healed and regrown, that there are zero changes in neuronal metabolism and structure.

The science is so new and still in the dark ages, relative to heart disease or cancer treatment, that to say we know with certainty the future and the risk is full of hubris. But then I’ve discovered too many doctors, particularly neurologists, are like that — think they know it all in the face of great ignorance, think they recognize brain injuries when the cognitive ones zip right over their heads — and so why would the population be any more knowledgeable?

Researchers are finding that people who have traumatic brain injury have a higher risk of Alzheimer’s, Parkinsons, and so on. Yet they cannot say if the long-term effects of brain injuries are different in people like me who’ve had active treatment for cognitive deficits. But to assume not is a dreamy, potentially dangerous assumption.

I’ve met people who’ve experienced bad bangs to the head but with no broken skull, maybe only temporary unconsciousness, which they’d shrugged off and if they saw a doc, told it’s just a concussion, watch for a couple of days, then should be fine. Yet when they hear about some of my difficuties, they go, “hey, I have that too.” They always thought whatever “that” was was normal. It isn’t. I never had these injury-related issues pre-car crash. Most people don’t. Yet they had an impact on these people’s lives, and because they never made the connection, they didn’t understand the problem, never mind how to heal it and improve their lives.

It doesn’t help that even if you recognize you need to see someone about it, you can’t in Ontario because of lack of funding for neuropsychiatrists, no funding for psychologists who are on the forefront of active treatments, and severe cutbacks to community care. When no one knows about brain injuries, except as hockey concussions, why would the government fund adequate care?

Crosby and his docs have presented his concussion as healable as a simple broken leg, just takes longer. Even when concussions are recognized as real injuries with bad effects on the brain, they’re still represented as happening only to hockey players and having no lasting effects, thus no big deal.

Yes, the AGM theme is right: we need more awareness to stop injuries, to have access to good treatment, and to save the lives of hundreds of thousands of the walking wounded.

I am much better than those days of waking up, eating breakfast, having a nap until lunchtime, chowing down on a frozen meal before eating a chocolate bar on the way to yet another medical appointment (therapist, physio, psychologist, doc, whatever), then coming home to gaze gaga-eyed at the TV until bedtime. But the fatigue is no less frustrating. In fact, I think it’s worse because now my mind is alert and wants to engage with the world. As one old gent told me recently, in the six or so years since we first met, I have woken up.

I used to live the rest-crash model, that is, push myself until I crashed into complete stillness for hours and days of body-enforced rest, then repeat. But with a combination of experience, acceptance, smarter pacing, and working with a therapist on scheduling doable weekly tasks, I rarely crash – except for twice a year in January (gee, I wonder why) and late August/early September when I usually get sick and crash. Knowing this, one would think I’d plan for it. Nope. Every year, I hoped that this year I’d be better and could keep going. After all, my energy levels improve noticeably annually (makes one realise just how crippled with fatigued I was the first few years). But this January taught me to stop hoping and to get real. After I developed some weird-ass skin thing that made my hands layers of shredding skin with new, raw skin underneath and very painful to use, I decided enough. I was going to go on a staycation – a stay-at-home vacation – at these two times of the year before I got to the point of contracting a virus or became a puddle of mindless goo because I had run my body down and overtaxed my brain too much.

The other issue I have is that I can’t do physical work when I’m doing cognitive-type work. So I couldn’t clean the fridge while I was writing, reading, or even just keeping up with Twitter. Trying to do both leads to some very unpleasant physical problems, like burning up, retaining water until I look like the Michelin Man, heart and blood pressure getting worse, and so on. The staycation would give me an opportunity to do such mundane yet satisfying things like cleaning the fridge and purging the bookcase.

This August was my first execution of that decision. It was hard. I had so much to do. I didn’t start it on the day I had planned but a day or so later. Even then I didn’t cut my Internet connection entirely because I was expecting some important emails for a videoconference and a press release and I was supposed to be writing regular blog posts for The Toronto Star’s Speak Your Mind section on the Ontario election. Just the act of waiting and checking and waiting alone was a drain, never mind trying to write blog posts. Not the brightest of ideas. But the problem of self-employment, whether one is injured or not, is that vacations are tough to take. What if you miss that work opportunity that will make your year?

Anyway, I finally had it when I hadn’t read any of my stack of mystery books for over a week and was so not interested in doing anything. I turned off the WiFi. What a relief. It was another week or so before I felt ready to get back into the fray.

A change is as  good as a rest and a rest is as good as a full recharge. And when your brain batteries are usually about a tenth, uh, less, than that of a normal person’s, recharging is essential. Yes, it makes you feel like you’re constantly losing time, constantly screwing up opportunities or missing them, but pushing yourself until you crash means that you do even less and miss even more. Pacing is important, but for me the staycation is essential.

Being a long-time Torontonian, I have “known” Jack Layton since he was first elected to Toronto City Council. Back then the city was the centre of what was Metropolitan Toronto comprising Toronto, Scarborough, North York, Etobicoke, East York, and York, all of which were at odds with each other. Today, we are all one big city under the moniker “Toronto” and still don’t like each other. In the 1980s, Layton entered the spacecraft-shaped Chamber and roared his protest. That’s pretty much how I remember Layton: one big noisy antagonistic protest. It came to a head for me during the SkyDome building days when CityPlace (if I remember the name right), owned by CN at the time and in charge of developing the lands around the SkyDome, was almost brought to a halt by Layton because he said the buildings had to be one hundred percent social housing, else no building. No kidding. That’s why there was lots of green space, one narrow park dedicated to the Chinese rail workers, a driving range, a concrete crushing plant and no building for years. Needless to say,  I was heartily glad when he finally lost an election shortly after that. Since the Art Eggleton days, Toronto has been about destroying our past and doing nothing in the present, and Layton seemed to be a big part of that. I did not like the man, and I was not alone. Many of us cheered at his loss.

After three years in the wilderness, Layton returned to municipal politics. I was not happy. And then I began to notice he had changed. No more was he one big bossy noisy protest; instead he was envisioning solutions to current problems and using larger and larger stages to make life better in Toronto. Life in the wilderness had made him think. His demeanour had changed from fist and protest to energy and grins. He infected people with the idea that Toronto wasn’t about petty left-right bickering but about creating an urban space in which rich, poor, and middle class lived, worked, and played. Although he had become a driving force in the Canadian Federation of Municipalities, I hadn’t realised he was dreaming even bigger until I read the news that he had become leader of the NDP party. I’m not sure why that surprised me. Toronto City Council bans party politics, but we had all known Layton was an NDPer, even before the days the NDP Party began blatantly showed their backing of certain municipal politicians. Still, I had always seen him as a city man not as a national politician. But then eighty percent of Canadians live in cities. Why should we not be represented by a politician who loves cities and knows how to make them work?

The election he started talking about becoming Prime Minister, even in the face of scoffing and rolling eyes, is when I knew Layton had transformed himself  completely and methodically over the years. He had become a politician with an unattainable dream. And he was going for it.

In the last few years, Layton won me over completely. He had a happy optimism that wasn’t Pollyannaish or head-in-the-sand-refusing-to-see-reality. No, it was an optimism that faced reality and still rejoiced in the coming triumph while planning how to make it happen. It was so rooted in reality, it was infectious. He was savvy and understood that by lifting people up you could get more things done that helped people, made life better, made us productive and energetic, made Canadians want to do more for their country together. He was tough. You can’t make statements like “I’m campaigning to be Prime Minister” and then weather all the tomatoes and eggs and laughter lobbed at you and keep dancing forward without being tough. He was resilient. He took the failure, thought on what kind of politician he wanted to be (apparently even before his big public failure of losing an election), and came back with bigger dreams and an inspiring way. He had courage. I’m not sure when he decided the NDP would form the national government, but a person can’t envision such a thing and plan for it as if it is entirely possible without having courage. Even with the plethora of support he enjoyed from family and friends, it was and is a breath-taking dream. He had energy. Some people have loads of energy; some don’t. But I believe that pessimism is an energy-stealer; division is an energy-stealer; dwelling on failure and nurturing hatred for not getting your own way (politically) is an energy-stealer. Optimism gives energy; bringing people together creates more energy for each person; dwelling on failure long enough to figure out why and thus come up with a solution then sticking the failure in the past gives energy; shrugging off not getting your own way and figuring out how to do things better puts the focus firmly on the present and propels a person into the future. I think that’s why so many people liked watching him: his energy and joy flowed out of him and into us.

On July 26 when we heard the news of Layton’s cancer, I wrote:

“… when you are at the point of achieving your greatest goal … there is something intensely grieving about receiving that kind of news. One moment, you are happy, laughing, loving each day, anticipating with excitement the fulfillment of all your work; the next, you’re facing the death of your dream, and in Jack’s case, perhaps his very life.”

That is what makes this news intensely tragic. Layton had worked a long time, had spent a long time thinking and planning, to make his dream a reality. And it wasn’t his spirit that killed it; it wasn’t lack of opportunity or even ill health; it was an evil process that today’s medical science and knowledge was helpless against.

When I saw him on TV on July 26th, I first saw his body: emaciated, pale and flushed, failing. My heart sank. Then I saw his eyes, his spirit. So strong, so determined, full of hope and planning. If spirit alone could delay death, Layton would be alive. After all, it was that spirit that had already done the impossible: gotten him through the first six months of this year, including an election. His fractured hip puzzled me – the explanations given didn’t seem to jibe to me – and his shrinking frame not just from diet alone. Yet he showed more energy than Prime Minister Stephen Harper and then-Liberal leader Michael Ignatieff combined. And he triumphed. He achieved the penultimate step to his unattainable dream. That’s what optimism, courage, facing reality, yet dreaming big do for a person. And not relying on contacts or others to make things happen.

I am overwhelmed by the tragedy of his death, of witnessing the death of a man who thrived on life and was cut down as he was seeing the fruition of all his work. Only four more years, and perhaps he would have become Prime Minister. I am also overwhelmed by the tragedy for Canada. We have a Prime Minister who thrives on division, who is about as inspiring as a wet teabag. We have an unproven Official Opposition who doesn’t seem to have a member with Layton’s combination of dreaming and pragmatism and ability to negotiate. We have a Liberal party who still doesn’t seem to get why they were tossed out. And if Toronto is any indication, we have a country full of middling politicians and apathetic people who all believe the best we can achieve is mediocrity, the best thing to do in all cases is nothing or dreaming small, and the best dreams are not about people – rich, poor, middle class — and how to make their lives better.

After my last injury, I became afraid of having dreams. It wasn’t the first time injury and events out of my control had derailed my dream. Previously, I had been able to pick up and get going again, but my closed head injury put paid to my dream – I heard the final clanging shut of that door six years post. And then help arrived out of the blue. Still, I remain fearful of dreaming, for to me dreaming equals bad things happening. The power of Layton is that he never stopped. His legacy is for us to switch gears, from envy and division, from apathy and learned helplessness, from waiting for others to do – to being the dreamers and doers ourselves.

No man is indispensable. But what Layton gave us is. Layton did seem to understand how tough life is for the vulnerable in society, and so few politicians really do. They spout trendy phrases but act in a way that makes life more difficult. And so perhaps Layton’s best legacy is not to look for an NDP politician to replace him, but to take on his best characteristics and to dream the unattainable for our country, our fellow citizens, and ourselves, and, through our actions, force politicians to make our dreams happen. Illness and brain injury has a dampening effect on how much one can physically do yet our spirits can still act. Perhaps those of us with low physical energy cannot march in protest, but we can goad others into marching. Perhaps we cannot write letters every day, but we can blog or tweet our thoughts directly to MPs every time we can, even if all we can is once every six months. Perhaps we cannot express ourselves well, but expressing ourselves even in a few, short words is better than not at all. And most of all, we can mimic Layton’s resiliency. His seminal failure was not  of health but it was a mammoth one nevertheless, and he came back like the proverbial cat.

I may be afraid of personal dreams, but I can dream for my city and my country. We can together adopt Layton’s brand of optimism, face reality then let our minds wander freely into amazing visions of better things, and ask ourselves why not?

“Groucho Marx got a lot of laughs for saying that he’d never want to be a member of a club that would accept him as a member.” (Katherine Wise)

So begins the brainline.org article Brain injury Blogs: Voices from People Living with Traumatic Brain Injury about five bloggers, including me (!), whom they declare as being the people to read “if you are searching for encouragement, advice, or information from an authentic source.” All I can say is I agree with Groucho: this club of people with brain injuries — invisible injuries many deny to boot — is not one I would volunteer to join. But it sure is nice being tagged as a blogger to go to for encouragement and information.

I encourage you to check out Wise’s piece. And even if you don’t have a brain injury or know a person with one, you may find the stories of my four fellow bloggers interesting. One thing I noticed — we were all injured by (words removed for polite ears) drivers. A red-light runner, a truck rear-ender, a double-rear-ender with a push forward into fourth car (me), car crash, drinking and driving. Four sober, one drunk. There’s a message in that, methinks.

A 24-hour monitor is like a regular blood pressure test in that the lab tech wraps the cuff around your upper arm on your non-dominant side, except it stays on for 24 hours and the other end of the hose that comes out of the cuff goes into a big-wallet-sized heavy rectangular box. That box inflates the cuff at fifteen- to twenty-minute intervals (yeah, ouch) and records all the data. It sits in a fabric pouch that is belted on to you, either with your own belt (can get a little tricky at bathroom time) or a supplied waist strap. I was given the waist strap the second time round, but at its smallest setting was too big. I think they make these for obese people and forget normal or overweight people use this too.

I think the cuff is a little thinner than the one at your doctor’s office, but the one on the new monitor was considerably stiffer than the old one. Not good. Softer fabric equals happier arm. A cuff that didn’t slide down over my elbow, even after some furious readjusting would’ve been nice too.

The winter is definitely a better time to get this done, for you can hide the cuff under long sleeves and the monitor under layers of clothing. Summer it all hangs out.

I went home. And stayed there … well, except for a trip to a coffee house. I put a bulky shirt on for that.

But winter or summer, there’s nothing you can do to muffle the loud beep it gives to warn you that the cuff is about to inflate, time to relax your arm because if you don’t, the reading will be bad and it’s going to go off again in a couple of minutes. Double ouch. At the end of the reading, it gives a double beep to tell you that it’s safe to move your arm again.

This is my second 24-hour blood pressure monitor test. I had the first one in early 2007 after I’d been put on atenolol for my fast heart rate. I was concerned that the test would not show my normal blood pressure but as it is under medication. How could we know what was happening to me if it was being masked by a beta blocker? But such has been my story with cardiologists since my traumatic brain injury (also known as concussion or closed head injury).

In the early years, I would have my blood pressure taken during one of those many interminable functional assessment tests, sleep tests, medical consultations, psychological tests, neuropsychological tests, and on and on, ordered either by the insurance company or occasionally by one of my doctors. Usually, my blood pressure was up. Then I’d go to one of my doctors, and my blood pressure would be down. This went on for years, and all the docs would say is everything is okay, also the same about my high heart rate. I think they’re idiots to ignore the latter. I’m not a hummingbird or a baby. I’m an adult female whose heart rate should not be above 90, never mind 120 — it’s a symptom telling them something is wrong. But I digress. I’m supposed to be talking blood pressure. Deep breathe, bring it back down. Okay. To continue.

My newish GP has started off on the right foot by convincing me to have the 24-hour test done. He’s probably done it now as opposed to a couple of years ago because I took myself off the atenolol this past winter and now he can see what’s actually happening, plus is no more relying on the cardiologists to take care of it (ha!).

For years, my yo-yoing blood pressure has not been dealt with. I should say at this point that all my life my blood pressure has been low, so low that under stress it dropped like a stone, and only willpower kept me from not following suit. At the time of the injury, it had reached an all-time high of 110/70. It never, ever rose in reaction to stress. A very smart specialist figured out that I did not produce enough epinephrine and norepinephrine normally and also during stressful situations. That’s why my blood pressure dropped instead of rising under stress, including exercise.

Stress can be mental, as in doing mentally taxing work; physical, as in exercise; emotional, as in those notorious family get togethers depicted in movies; psychological, as in not having the coping skills to deal with difficult people or situations.

To figure out out what to do about my yo-yoing blood pressure, we have to look at my coping skills (fine), the actual stress I’m under (situational, emotional, physical, mental), my physical parameters (weight, diet, exercise), and how my brain has affected the whole shebang.

A properly functioning brain is rather important to cope with stress or to learn how to do so and for your body to react in a normal fashion. Luckily, I already had excellent coping skills (as measured in a stress management course at Toronto Rehab). I couldn’t imagine trying to learn coping skills with having an acquired learning disability from the injury and, at the same time, relearning a whole bunch of things. Still, my skills were insufficient against the stress the brain injury and its sequelae had suddenly subjected me to.

So basically my blood pressure started to yo-yo because of damage to the brain area that regulates blood pressure, to the area that responds to stress, and the extreme stressors inflicted on me.

This is my theory.

To really understand all this one has to know how the brain affects blood pressure and how other parameters like weight and diet interact with that. The sympathetic nervous system affects a whole bunch of organs and systems in the body. We already know mine has been in full alert since the injury, and so it really isn’t surprising that my blood pressure goes up. What is puzzling to me is why it goes down. We also know that people with brain injuries have a harder time coping with stress, not just in lack of skills but in having damage to the brain. For example, a noisy environment can bother anyone. But the sensitivity to noise is so acute after injury that the same environment that may tire a normal person out after a couple of hours is like being under a 747 taking off, next to a jackhammer, with a bass-thumping car nearby for a person with a brain injury. You want to run and hide fast.

Another thing I should note here is that I get all my test results because care between specialists and GPs is so fragmented that if the patient doesn’t have copies of everything and can take copies to all their docs, there will always be big holes in one’s care.

I have had several Holters and blood pressure tests, and this past week I have finally, finally learnt to keep my own activity log because most labs don’t correlate the log you give them with the test results unless they correlate with arrythmias. The mainstream media may yak on about stress and heart health, but cardiologists and labs couldn’t care less about looking for signs of stress in your heart rate or blood pressure test results. I think, whether or not you have a brain injury, but particularly if you do, you as the patient should keep your own activity log, then ask for a copy of the test results and correlate your activites with the list of every reading over the 24 hours (of course this presumes the lab gives comprehensive results — kick up a fuss if they don’t — you don’t need to go through this hell for a crappy report).

There are three things the report can tell you: On average, do you have hypertension? What makes it go up? What makes it go down?

So I have borderline-mild diastolic hypertension. But it goes down at night, which is a normal and a good thing.

Emotional and financial stress make it go up. Surprise, surprise.

The 32-minute alpha-wave session on the audiovisual entrainment unit makes it go down, as does massage in my robotic chair and possibly a minimum of one-hour with the Cranial Electrical Stimulation (CES) unit on the Sleep setting. But nothing makes it drop as deeply as deep breathing does. Wow. A good twenty to thirty points.

One thing that was really awesome to learn was that the CES device has done amazing things for my skin. Its effect doesn’t last long, which is why I have to use it twice a day. But it meant when I took the blood pressure cuff off, my skin wasn’t red all over, puffy, and itchy-painful like in 2007. Sure, there were red marks at the elbow crease and a small patch on the upper arm. But that was it. When I had adjusted the cuff prior to the previous night’s CES, I had seen that angry red puffiness already beginning, and a largish patch it was too. So despite not having taken the cuff off at any time, and after two CES sessions, to have it look as good as that, and fade so quickly too, at the end of the test is amazing.

So what does this all mean? Some thinking is in order.

But then I’m not sure many in the medical community are aware of this problem or pay attention to it either, in Canada anyway.

I do not remember being asked if I’d stopped sweating after I was diagnosed with a closed head injury. I was not told that it could be a problem. I was not given any suggestions for how to keep cool when your body’s main mechanism to cool itself is shot to hell. Yet I ranted often about how hot I was, how much I burn. Methinks, the word “burning” ought to have twigged something in the minds of medical professionals because when you sweat, you’re hot, you’re sticky, you’re broiling, but the feeling of burning skin is unique to the no-sweat mode I think. My skin also had these hot red rashes that would pop up in different places but usually around the neck, on my arms, and wherever clothes hugged the body like at the waist. And if I didn’t deal with them, they swelled. The only way to get rid of them was to run cold water on them till the skin was numb then slather on melaleuca-oil cream. But never mind all that — I was dismissed.

Perhaps I didn’t use the “right” words to twig the doctors to the fact I didn’t sweat anymore; perhaps I didn’t mention anything about how hot I was because by the time I was in their offices, I had cooled down in the air conditioning and the burning/sweating issue had dropped to bottom of mind as we discussed more difficult immediate problems like writing.

My acupuncturist noticed.

And she noticed when I began sweating after I had undergone about a year of brain biofeedback treatment.

At that point, I had become so used to the sweat-free state, it was like going through adolescence all over again: becoming aware that you’re sweating, learning how to use anti-perspirant, taking care to avoid sweat stains.

When I tried to Google about sweating and brain injury, the only articles I found were about those so injured they were in hospital ICUs, in comas. Not me. Not my kind of brain injury. Not relevant to me, it seemed. So I kept figuring things out on my own.

After I began sweating again, I was reminded of how effective that stinky, sticky function of the human body is in keeping you cool and helping you cope with the heat, even being comfortable in it.

Unfortunately, I don’t sweat whenever needed. It’s like whatever part of the brain that controls sweating is not working at a hundred percent. Sometimes it only has some body parts sweat, not the whole body. Sometimes it barely turns on sweating. Sometimes it judders to a stop, and I burn again. I have to remember then to drink more water with lots and lots of ice in it and not to move much, if possible. Before I began sweating on and off again, I used to chew ice, drink ice water to cool my insides, take lots of cold showers until the water stopped running hot off my head, soak my feet and arms in cold water, not exercise, stay in the shade, wear hats that were made for sun protection, stay indoors; I found it far more difficult to cope with heat that was not as high as today’s record-breaking heat; I became weak and fatigued more than usual; I also found it impossible to sleep.

This year is markedly different. I can drink water and it comes out, not hangs around in my tissues; I can walk in the heat; I can sleep easier, though I think tonight’s temps will challenge that majorly; I can still exercise and think, albeit not as much as usual. In short, the heat has not stopped me dead. That’s what sweating does for a person.

What struck me was the energy, lots of energy, healthy energy. Energy I don’t have and had forgotten I had.

My, how far one falls when ill or injured, and how much it changes one’s perception of normality. And how big a hill it is to climb to rejoin it.

The fall is swift. Slow it is to adjust to the bottom and learning all about it. Climbing back up is sometimes done in only a year or two; for those lucky ones, it is a struggle, but reaching normality is doable. For those of us whose fall is long and whose climb is full of unknowables, without tools or received knowledge, the sunmit of normality shifts position. It seems to be within reach, and then you attend a wedding and realise it’s not even close.

People don’t have to rest up for a wedding. No taking the day off or week off. Those of us with chronic illnesses or injuries must set aside entire days. Progress means setting aside several hours on several days and not doing anything mentally or physically taxing the other hours. Progress means accepting this and not resenting the fact that “normals” do not have to take time off work or spend boring hours resting or watching TV. The idea of not having to rest up before the event is unfathomable.

People can handle the noise, although I think DJs believe the point of their work is to drown out conversation. (Even at church, the music group doesn’t believe in turning down the volume after the service so that people can speak to each other at normal levels.) Once the dancing begins, the volume is so high, it’s an assault, the bass so pounding, it hurts the heart. But “normal” people either dance or watch the dancers; they do not go in search of the one quiet spot where senses aren’t screaming and voices can be heard, where only the kids keep you company. “Normal” people have enough puff power and good-enough hearing or good-enough comprehension not to have to follow the lips to be able to bellow in each other’s ears to be heard and to hear. “Normal” people may be relieved for the noise to end after several hours, but it doesn’t tire them out from the get-go.

Some people dance, dance, dance. They may take breaks, but then The Macarena comes on, and they’re in a circle with the rest, grooving the moves. Even the elderly get up to dance, although they are usually content to watch the young ‘uns enjoy themselves as they themselves once did at the weddings of previous generations. Still, the definition of elderly is no longer people in their sixties or even seventies. Us young “non-normals” get up to dance, then our bodies balk or hearts say enough, and we must sit. Or, as I discovered, the brain cannot process loud back-beated music, people close by dancing their own moves, and figuring out where to put the feet in old, well-known steps, all at the same time. Cacophony reigns in the brain, and the feet go, “huh?” Dancing is not supposed to be frustrating as well as tiring within the first few minutes.

People can do other things on the day of the wedding and day after. Some people attend two weddings and are as fresh at the second as at the first. The bride and groom are preparing right up to the start and dancing to the end. Some people take their kids to a hockey game or soccer game the day after, and the kids have been celebrating right along with them. Some people garden and attend other social events the day after. We, the outsiders, nap. And we pray for restorative sleep at night.

I did a bit more than nap the day after, for I have been using my CES and AVE devices more often than usual to stimulate my energy and my thinking. They allowed me to attend a post-wedding breakfast and plant a few flowers after several hours of quiet time. But there is a fine line in pushing my brain to work better, one that if I cross will mean a bad crash, not just in energy but in the body being unable to function properly. Been there, done that. Was unpleasant. Very unpleasant.

Before the wedding, I thought I had made much progress; after, I know I am not nearly as close to “normal” as I had thought. I am still an outsider. It is discouraging, especially when people treat you like a child or avoid you, but as Miss Marple said on TV last night: “One must face things as they are.” Only then can one truly know where one is on the hill, where the summit is, and where to put the right foot next.

When someone who has a chronic illness or injury, particularly brain injury, fibromyalgia, or chronic fatigue syndrome, say they’re tired, they don’t mean what you experience at the end of a long day. They don’t mean something that can be overcome just with a little application of willpower like when you get up out of your chair to go cook dinner though the day has been long. They don’t mean the normal exhaustion from work or school. And it is not an euphemism for lazy or unmotivated. It’s worse. Way worse.

I have physical pain from soft tissue (fancy word for muscles and ligaments and such) injuries and the whiplash, pain that always sits like stripes over my muscles and when it increases, eats into them and ascends up into my head to blossom into the glory of a migraine. And I also have fatigue. Of the two, I often think fatigue is the worst. Pain one can manage. Pain one can learn to live with so that it becomes the background noise of life. Most pain one can work through and treat (up to a point). And pain from injuries diminishes over time — as long as you weren’t stupid like some people I know and used the injured area like normal before it had healed and didn’t do the physiotherapy-prescribed exercises. But fatigue continues like some vengeful lead weight that sucks every drop of fuel from your muscles, every thought from your mind. It is always there. And it always increases as you do anything: get up, eat breakfast, brush teeth, read emails, attempt to reply…time for a lie-down on the couch. There is no pill, no remedy for fatigue. Fatigue cannot be resisted.

So my chest grew heavy, my heart leapt up in horror, and my mind screamed, “Noooo…” when I heard the speaker at the latest BIST meeting — when I heard the person with brain injury — say that he continues to deal with fatigue 14 years post.

I already knew from talking with others with brain injury who had suffered their injuries in the 1990s that fatigue is a never-ending problem. It does weaken over time, both as the brain heals and as you learn to manage and accept the limitations it imposes. But for some reason, I had thought because I had done brain biofeedback treatments (which though exhausting beyond words during it had increased my energy) and use my gizmos daily and take my supplements and exercise in a way my body can cope with and eat well and because I was steadily increasing my writing time that my fatigue would go away. A person with brain injury who can work must no longer have issues with fatigue. Ha!

The speaker has a job. The speaker speaks to audiences all over about his experiences (which means he has enough energy to travel and speak, which I don’t). The speaker looks “normal.” And he still has fatigue. As he so eloquently put it, when he went back to school, that is all he did. Unlike before his injury where he would’ve been able to go to the gym, work part-time, etc. in addition to studying, post-injury he could not. All he could do was go to school and back home again. As a result, he gained 40 lbs. I didn’t go back to school. My equivalent was brain biofeedback. I gained 8 kg. And although I need more treatment and although I’d like to take extracurricular courses again as I used to do before my injury, I dread the fatigue growing more powerful and preventing me from doing the things I now can. I dread how it will once again suck all vitality and joy out of life all the time, instead of maybe weekly. For pain is emotional; fatigue is deadening. Pain can be resisted, even if only for 5 minutes. Resisting fatigue is futile.

Before hearing this man speak, I had thought that if I reached a certain level of functionality that it meant fatigue would’ve lost its grip. Apparently not.

““The brain goes brrrrrrrrp and is temporarily out of order,” says Richards.

This massive electrical discharge is why people who have suffered a concussion are initially dazed and confused. The hit has obliterated their short-term memory.

“They can’t remember their name, where they are, what day it is, what they are doing,” says Richards. “It’s kind of like the brain has to reboot because the seizure has wiped the slate clean.”

I don’t remember being dazed and confused or even not knowing who I was. What I remember is after impact #1, I froze, raised my hand to protect my neck (as if that would work), and then started thinking again about the book I was in the middle of writing — Lifeliner. After impacts #2/3, I had an extreme emotional reaction. (Two impacts came from the shit drivers who rear-ended us, the third from being pushed into the car stopped ahead of us. I don’t know which rear-ender shoved us into it.) And I didn’t move until I was told to get out of the car.  Later, when we were told to move to a side street, I again stayed in the car; I had no interest in what was going on.

But that’s not the same as having no memory or awareness of what happened or what is going on. I don’t know why this myth of memory or awareness loss persists, especially when the injured person remains conscious, or perhaps the loss in me was a nanosecond, but certainly imperceivable to me or anyone else.

I will say though there is definitely diminished perception and awareness to the point that you may see but you don’t really take in what you’re looking at. It was like the day six years after my injury when I stood at Bay and Bloor (an intersection I’m very familiar with and had seen many times in the previous six years) looked around, and suddenly I was seeing it as if for the first time in six years. I just stood there and gawked.

The amount of axon damage is related to the force of a hit and — more significantly, scientists surmise — the direction of the hit to the head. One that catches a person on the side of the head, twisting it sharply to the side, creates greater shearing force than a hit that rocks the skull from front to back.

During impact #1, I was staring straight ahead through the windshield of the car. Because I raised my left hand to cradle my neck, during impact #2, my head was slightly twisted to the left. So I had two directions of force on my brain. Peachy. It’s probably what created more diffuse injuries than would be expected in a straight back-and-forth slamming.

When the brain rattles from a hit to the head, cell membranes open up and a biochemical cascade washes through the tissue and disturbs its precise chemical balance. Specifically, potassium floods out of the cells, while calcium rushes in.

The cells desperately want to restore balance, which requires a huge amount of energy. For a healthy person, this is an easy thing do. But a concussion mucks up a host of other chemical processes that affect how the brain produces energy.

The first problem is that calcium, in high levels, is toxic to brain cells. Normally, the brain would lower calcium levels by drawing on the power of mitochondria— the energy factories found inside all cells. But as the mitochondria work to reduce super-high calcium levels, they clog and don’t produce enough energy.

Let me tell you the fatigue from the brain injury and from treatments to heal it is unreal. Even brushing teeth can require a nap afterwards. (Makes you not want to brush your teeth, aside from just forgetting in the first place.) Everyone in brain injury care knows about the fatigue. But this is the first time I’ve heard a possible scientific explanation, though I had known it was something to do with the mitochondria (university studies come in handy!).

However, I decided to look into this research. So far Dr. David Hovda’s investigative work on the neurochemistry and treatment of  concussion seems to focus mostly on rodents or animals. That means this work is in its infant stages. That means he cannot mimic actual injuries that humans sustain in car crashes and sports, but at best approximate them with “controlled cortical impacts.” His work is exciting, but not yet applicable to humans in any real, practical sense.

At the same time, the brain is still seeking energy to restore its chemical balance, so it sends out an emergency signal for more glucose. Usually, glucose — the brain’s primary fuel — is carried to needy areas by an increased flow of blood.

But a concussion affects this process, too. After a hit, blood vessels constrict, making it difficult for blood to carry glucose to where it is needed most.

Oh my God! My desire for sugar — for things like pop, which I hate, or cookies — gets extreme whenever I do mental work or undergo treatments. (Otherwise my desire for sweets has dropped.) This connection became very clear to me when I began brain biofeedback treatments. After each session, I had this overwhelming desire to drink a can of ginger ale with sugar in it, not artificial sweetener. I could not resist it, and the fast downing of sugar always made me feel better. It was the only time I ever wanted to drink pop. Even today, if I’m more tired than usual (and I am always, always tired), and even if not hungry or needing food for my body, eating something will perk me up rather obviously. And, on a side note, doing things that increase blood flow helps too.

I have tried to discuss this with family, friends, health care people, anyone who can help me figure out how to feed my brain without feeding my fat because it is definitely not an empty craving but one that comes from my brain’s real need and because responding to my brain’s demands results in weight gain. This is also on top of the fact that brain injury does throw your internal functioning out of whack, something doctors simply don’t recognize.

I haven’t had much success.

I think someone has to come up with a way to get the body to send the glucose straight to the brain and bypass the fat stores — because the rest of the body doesn’t need it, it will snag the glucose and stuff it into the fat cells. The brain has to compete with the body for that glucose.

Dr. Hovda is on the right track perhaps with his ketogenic diet study, but again it’s in rats. No one seems to have studied this in humans, and certainly the medical community doesn’t even discuss diet in relation to brain injury, never mind the kind that can feed the brain sans feeding the body.

People who have a concussion will describe being overwhelmingly tired. This weariness is actually a neural fatigue, brought on when the brain doesn’t get enough fuel and must struggle to perform. Pushing through the fatigue is one of the worst things somebody with concussion can do.

“During this energy crisis, the brain wants to shut down and be very, very quiet,” says Hovda. “If you exercise the brain, or if you experience another brain injury (during this time), you will prolong the symptoms associated with concussion and extend the period of vulnerability.”

Well, I don’t know if we really know what the cause of the fatigue is. We understand its symptoms, have a visual concept of how it must be, but the mechanism details for fatigue in humans is not known. His statement that “pushing through the fatigue is one of the worst things” is theoretical, based on rat studies. How can he possibly know for sure?

If you don’t push through the fatigue, you’ll (a) be criticized and (b) won’t get the help you need. They talk about the energy crisis in this article as if it’s short term. It isn’t. It lasts years, decades. Sure, it gets better. But it doesn’t take much to land you on the couch and in front of the TV again.

Ironically, the one thing that caused a massive energy drain in me — the brain biofeedback — gave me way more energy in the end than the do-nothing approach had for the previous five and a half years.

Also, we know that basal metabolic rate consumes the vast percentage of our energy. In other words, we consume most of our energy needs just by living. Exercise adds very little to our energy consumption. Have you ever checked out how much effort you have to make before exercise makes any sort of indent into increasing your energy consumption — aka calories burned? Five minutes a day ain’t going to do it. Thirty minutes will. So why would the brain be any different? It’s already consuming vast gobs of glucose just to run your heart, lungs, digestive system, hormonal system, eyeballs, hearing, touch, taste, smell, etc. etc. How much extra energy does it take to think? To read? To write? Is it the same as exercise, that is, five minutes of reading isn’t going to make much diff but thirty minutes  will?

I know from experience that in the beginning, five minutes of reading was like studying university texts for five hours. But does that mean in order for your brain to heal, you should do nothing? Isn’t it more likely that it means you need to start slow, build incrementally, be patient with yourself until you do reach normal levels of metabolic, hormonal, and cognitive functioning in areas like attention and memory. It seems strange to say that you’ll perpetuate the potassium-calcium cascade as long as you do anything but stay in bed because if that’s true, your brain will probably die in no time. That makes no sense.

This reminds me of the old adage that after surgery or when injured, you should stay in bed and rest. But we know now that the best thing to do with post-op patients is to get them up and at em practically as soon as they come out of the anesthesia. We know that moving the operated on or injured part — wisely of course and incrementally — accelerates healing. So why not the same for the brain? It is part of our body after all.

Currently, the only treatment for concussion is physical and cognitive rest. Doctors rely on standard neuropsychology tests to help determine the severity of an injury and whether a concussed brain has healed.

That’s old knowledge. Scientists in the US have already learned that progesterone has a positive effect, at least in severe brain injuries. They also know there are hormonal imbalances, like cortisol, for instance. Plus naturopaths already know that omega-3 fatty acids help the brain function better, as does physical exercise. Smart resting is good, but doing something to help the brain recover is better. Why do they not consider studying progesterone in concussions? Why not consider increasing omega-3 fatty acids in the diet because we know those are important in brain function? What about suggesting temporary increase in cholesterol in the diet to help regrow damaged myelin sheathes or research ways to regrow neurons such as what Dr. Michel Rathbone is doing? Or how about prescribing an exercise plan that takes into account the fatigue and sympathetic-nervous system issues?

But that would require some thinking, spending time with patients, and talking to psychologists on physicians’ part, and God forbid they do that.

As for standard neuropsych tests — pffft is what I say. All those tests said I was hunkey dorey. Yet I had to be reminded to brush teeth, feed the dog, make lunch before my stomach started screaming, make phone calls, what to say when I called people. Yet I slept for 12 hours. Yet I found crowds and groups overwhelming and would hide in the bathroom. Yet I couldn’t follow or remember what I was reading. And so on. There was way more dysfunctionality than that. And I’d get stupid comments from friends like “I never remember what I read either” — oh, so that’s why you cannot learn anything and why you cannot build on your professional knowledge, eh? Not.

It’s easy to ace those tests, not so easy to function in the real world. It’s even easier to ace those tests when they’re given to you repeatedly, as psychologists well know, as was done with me. Seven times in seven years. Those tests will never tell you if the concussion is fully healed. Idiots.

While the majority of those who suffer a concussion will get better in one to three weeks, about 15 to 20 per cent of patients will have symptoms that linger for months and sometimes years. Scientists suspect these patients may have a genetic predisposition that makes their brain more vulnerable to concussion.

The specialist who diagnosed my mild traumatic brain injury (mild! Such a misnomer!), got a complete history of my past. Although it had been nine years since a previous car crash and I had not had any clinical signs of a concussion, he said the long-term ramifications of that impact predisposed me to a brain injury.

So I’m not so sure about a genetic link.

I’m much more sure of all those little bumps on the head, those back-and-forths in fender benders or sports hits, setting you up for greater injury when you’re hit hard. But we don’t remember all those little ones, and when your memory is screwed, even less likely to remember and tell the docs.

If I’m ever hit again, my chance of severe brain injury is now much, much higher because of my previous injuries. Yet I wonder if all those brain biofeedback treatments and my regular use of audiovisual entrainment as well as acupuncture treatments has put me back into normal risk territory? I hope so, and I pray I never find out.

Researchers are also trying to figure out why only some people are affected by an accumulation of concussions by teasing out the link between repetitive injuries and chronic traumatic encephalopathy, a progressive degenerative disease that seems to mirror the biology and symptoms of Alzheimer’s. Connections have also been made between accumulated head trauma and devastating diseases such as Lou Gehrig’s and Parkinson’s.

This probably has a lot to do with what kind of treatments they had received or not for each injury, whether they had support or not, what their bad habits are, what kind of diet they had before and after injury, if they were given an exercise routine appropriate to their injury, if their metabolic and internal functioning issues were recognized never mind addressed. There’s an awful lot of stuff that affects long-term outcomes, stuff that the medical and research community are ignoring, stuff that’s right in front of their eyeballs if only they’d open their lids.

Yes, I am still on it. Um, well, sorta. I have stuck to the principles of keeping out high-GI foods from my diet as much as possible and trying to incorporate as many low-GI foods as I can; of limiting my rice and pasta consumption to what is recommended in The GI Diet; of eating old-fashioned or rolled oats instead of quick; of using whole-wheat flour exclusively in my baking; of eating non-sugary snacks in between main meals; and of eating low-fat cheeses and yogurt. I also have temporarily cut out egg yolks as a way to restrict my caloric intake. Nutritionally, I don’t have issues with yolks and do believe they add valuable fatty acids. But they take up a big chunk of my calories, and since January I’ve restricted my calories.

The GI Diet doesn’t advocate counting calories, but I was having great difficulty losing weight, partly because my hunger signal was way off base, and I had to retrain it. The only way to do that was to start counting calories. A pain but necessary. I use a diet and exercise app on my iPod to add up my caloric intake, and it is working well…once I’d figured out how many calories I should actually be eating.

I also adjusted my diet to try and get my cholesterol numbers back into good territory. After my last not-so-hot blood tests results, I researched the newest ideas and old, tested ones on how to get those numbers down. There are only two ways: exercise and eating foods either low in cholesterol or that mop up cholesterol I eat. The latter foods include oat bran, plant sterols (in vegetables and fortified foods), and walnuts. I discovered that by increasing my daily walnut intake from 10g to 28-30g, as recommended, I have also improved my sense of satiation. I do not know yet how this has affected my cholesterol numbers. I’ll find out in May.

The best and most important thing I did was adjust my brain function so that finally my exercise tolerance is increasing. Since the Fall, I have been inching my way towards normal levels of exercise. I’m not there yet but close!

So I think The GI Diet is good, but in the long run it’s probably more doable learning the principles and making them an automatic part of your day plus adding your own tweaks than following the book religiously. And any permanent changes you make in your eating and exercise is going to make your doctor very happy anyway!

———————–

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First Impressions of The GI Diet by Rick Gallop

The Core of The GI Diet by Gallop: The Glycemic Index

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At first I thought the fax machine had eaten most of the report. You see, these reports used to be like a phone book, then technology made them more efficient so they were only several pages long. This one was one page.

One page.

Well, OK. Maybe this one page is as comprehensive as those bigger reports were. Uh, no.

It gave the range of heart rate (and boy, does mine vary, nothing new there), and I looked for the times associated with the lowest and highest rates like on the previous reports. Not there.

Unlike previous reports, this one didn’t give the QRS total (the total number of heartbeats in 24 hours). It means nothing to me, but it should mean something to my GP. So how can he do his job properly when this is missing? I assume it’s on all the other reports because it’s, like, oh I don’t know, important!

On the good side, the average heart rate over 24 hours is noted. And it’s lower than it used to be! But, uh, what was my average at night and average at day? Never mind, the tabular hourly report will allow for that kind of calculation. Uh, no, wait, the report is just one page. No tabular report. OK, well, then — scanning, scanning — it should say here the time of the fastest heart rate and slowest one. Nope. Not even the longest duration of tachycardia or bradycardia. Oh brother. Who are these people? Never mind. On to the next paragraph.

It said there were five ventricular premature beats (no big deal) and one ventricular couplet. But — I flip fax over to see if by some miracle the info is printed there, nope — no times given either for each one or for the exact time they appeared most frequently, not like it matters in my case, but details are always better — and critical — than vague sometime-in-24-hours-we’re-not-going-to-tell-you-when-this-happened kind of information. Same for atrial premature beats and atrial couplet (never had a couplet before, but one is no biggie). Previous reports gave the time of these events down to the second.

On to the next sloppy part: “no significant ST depression.” For a medical report, this is vague speak. This is like when the doctor pats the patient on the head and says, “don’t worry,” except in this case it’s the cardiology lab telling the GP “don’t worry.” Unreal. In my previous reports, measurements are given as in “No episodes of ST depression (defined as < -1.0 mm or more) were noted in channel 1.” Wait a sec, channel 1? I check my other reports again and see that the number of channels is noted; some results are given by channel. This report doesn’t bother to note how many channels were analysed in the first place and so no results are noted in correlation to them. Guess this is more pat-on-the-head BS.

Onward.

Symptoms are mentioned and what they are correlated with. This is good. Usually the symptoms are mentioned elsewhere in the report or written in by hand and so are incomprehensible. So, for example, I know that the one episode of fluttering was when I had that one atrial couplet. Great. Uh, what time? Was I exercising? Was I using one of my gizmos? I did write those down in my diary for a reason, you know. How come I go to the trouble of recording when I exercised, and nothing is mentioned about that? There are no times given in relation to my symptoms or heart rate. Ridiculous.

Time! people. It’s important!

Time is so important that Holter reports usually include a tabular teport, showing in the left column the hour (e.g, 08:00, 09:00, etc.) and in a line across for each hour, the minimum heart rate, the average, and the maximum; total number of QRS; number of each kind of ventricular episodes (mine are usually a bunch of zeroes, with a 1 thrown in here and there); runs; and the same for supraventricular events. This report has, well, no tabular report because it’s just one page.

A tabular report is really useful not only to see the timing of events, but also for someone like me with a fast heart rate, to see if it does go down at night, to see when it’s fastest, to see if bradycardia events are only at night when in bed or asleep, and when tachycardia is most prevalent. With no tabular report, how the hell will I know if my heart is behaving itself in the less-stressful condition of sleep and slows down like it’s supposed to do? For someone with a brain injury whose system is on overdrive, it’s important to see what events and what times are the worst and the best so that the doctor can tell them… Oh wait, doctors don’t know yet that brain injuries cause problems with regulation of the heart. So, OK, for the rest of us, this information would give us precise feedback on what makes our hearts happier and what makes them speed up, whether exercise helps and for how many hours, whether the gizmos work in a noticeable fashion and again for how many hours. At the moment, I can take my pulse — if I remember, which I usually don’t — before and after I exercise or use one of my gizmos; I can take a guess based on how I feel. But nothing beats precise information. And this report is effing useless in that way.

In the beginning, Holter reports were huge because they included the readings of the QRS or heartbeats. All of them. The one I had back in 2008 shrunk the number of pages by printing out only those times when either symptoms or the incidences they noted occurred, like a ventricular premature beat. They noted heart rate and exact time, down to the second, of each reading. The GP could actually see the QRS of the heart beat and make their own judgement. If they had previous results, they could even compare: is it better? Is it worse? Is there no change? Well, this pat-on-the-head report clearly says you don’t need to know that! C’mon. We’re the experts, you leave reading QRS to us. How disrespectful. But I also wonder: can GPs do basic things like read QRS, at least well enough to put them into the total context of their patient’s health?

Previous reports came with graphical analysis. In one glance, you can see visually whether the heart rate drops at night, when events occur along the timeline, how each channel looks. Fast and effective. But this report is one page. So no graphical analysis. Because you know, stress being such a big problem in North America, and a worse one for those with brain injuries, information giving stress-related feedback is not needed, right? That’s what that stress test is for, the one that gives a snapshot, while you walk or run on a treadmill, not a 24- to 48-hour picture that includes everything from anxiety-inducing events to running (or walking).

I got mad. I didn’t velcro my chest to receive this kind of garbage report. So I called up my GP’s office and complained. They said they’d call the lab and get what I asked for. It may take a week. So far, I have received three pages of QRS readings. I can now see the exact time when my fastest heart rate and slowest one occurred and that they used a 2-channel Holter. I don’t know if a 2-channel Holter is the same, better, or worse than 3-channel; my GP ought to know. But I got curious so went Googling. I found a dog Holter website, which explains that all they need for a Holter report is one clean channel; the other channels are essentially backup. Given how the second channel looks on my report — bouncing off the page here and there — I’d say the backup failed! The top channel looks peachy though.  Anyway, with no tabular report and no graphical analysis, I still don’t know if overall my heart rate drops at night and into normal territory, rate-wise. I’m guessing it does; but hard evidence would be good…

You know, this report was more critical than my last one because I am off the beta blocker now, whereas I was on it for the previous one. How does my heart work all on its own, with no drug helping it along? Getting details on that is important.

This all makes me wonder: How many patients are going to call up their doc and complain about the piss-poor quality of their test reports? How many will even get or ask for copies? Yet unless a patient becomes an active participant in the management and understanding of their own health, this kind of garbage will proliferate and it’s us who will suffer. And we won’t know why.

So while we complain about the lack of health care dollars, basic health information that used to be given is now being withheld. If I hadn’t had doctors who used to hand me these reports, whether I wanted them or not, I wouldn’t have known how inadequate KMH’s report is. If I hadn’t developed the habit of gathering all my health information because either specialists disappeared (aka died) or because of all my insurance lawsuits, I wouldn’t have known how variable cardiac care is. If I hadn’t studied physiology in university, I wouldn’t have even a rudimentary understanding of some of this information. It must all look like gobbledygook to most people; but it shouldn’t to the GP. The GP needs to have a complete picture of their patient. That means they need complete reports.

This reminds me of the stress test I did a couple of years ago at a lab in one of the teaching hospitals (that reminds me of a desert). The cardiologist read out the report to me. I didn’t get a copy and was not well enough to ask for it. I noticed that the techs had “forgotten” to mention why the test stopped prematurely. So, not even the cardiologist gets a complete report in today’s health care system. And people wonder why heart disease remains the number one killer.

ScriptFrenzy is the screenplay sister of National Novel Writing Month (NaNoWriMo). It’s held every April, and fewer participate in it than in the November NaNoWriMo challenge. So one doesn’t get the inundation of daily Twitter updates and musings of NaNoWriMo, yet its different form of writing appeals. We all know what prose is but not the formatting and conventions of screenplays or plays. It’s different.

I took the time last year to learn the conventions of screenplay writing (though apparently, according to one miserly contest reviewer — miserly as in person of few words, which was effing useless — I needed to read up on how screenplays are written). And I converted Lifeliner into a screenplay. That is now filed away in a virtual drawer as other writing projects have taken over, but I still intend when opportunity presents to do something with it.

But it’s almost April again, I’ve done no prep, I’m working on the edits of my first NaNoWriMo novel She, revising my second one Aban’s Accension, planning on publishing both as eBooks, and I’m wondering if I’m mad even contemplating writing a stage play in the midst of all this, although I do have an idea for it. I don’t have a lot of energy, although ever since I deep-sixed the beta blocker, I have much more and better sleep and a suddenly new writing regimen that spontaneously put itself upon me. I wake up; I put on my CES device for the morning session; and I write on my iPad then rest some more till I’m ready to get up. I’m in week three of this strange new regimen. And I wonder, if it’s gone on this long, if maybe, just maybe it’ll last, and if so, then perhaps writing a play for fun while also writing my serious work — the novels — is doable. I wrote my screenplay pages so fast last year that I didn’t have to write every day to meet the 100-page script challenge by the end of April. So maybe I won’t have to write every day this time either, and those days I don’t work on the play, I blog.

You see how good I am at rationalizing an impossibility?

So….

Hmmmmm….

Ummmmmmm….

I’ll do it.

I’m nuts.

Then I had a closed head injury, a kind of traumatic brain injury where the brain bounces back and forth inside the skull. My heart rate shot up permanently. And three years later, I had a Holter monitor done.

So you’re probably wondering what a Holter is. Patience! I’ll explain in a mo.

Unlike the previous ones, we discussed the results over a quick phone call because of SARS barring me from the hospital. I don’t remember the specifics except nothing changed.

Then four years later, another doctor noticed my fast pulse, put me on atenolol (a beta blocker), and a few days later I saw the cardiologist who ordered another Holter. (I had made an appointment to see him the previous Fall because my GP was not happy with my heart, so the timing was a bit of a coincidence.) He said don’t come off the drug for the test, and afterwards said, “just stressed” (no kidding!). Stay on the drug.

When my parents started to worry about my heart (like, they don’t worry about my health to my face, like, ever), I made an effort to find a new cardiologist. Did you know there are different specialties within the heart area? Me neither. Three docs and a Holter (on drug for that one too) later, I ended up with one who specializes in nerves to do with the heart. Yes! Finally the docs know what I know: the problem begins in the brain.

I have a sluggish vagus nerve. See a behavioural cardiologist. And change the beta blocker to one that includes an alpha blocker he said. But I never switched. He doesn’t prescribe; my GP was sick; my new GP had bigger fish to fry with me and told me just to stay on the atenolol. Alpha blocking by the new drug may be better in targetting the heart not blood pressure, but it fatigues as much as beta blocking. The atenolol was bad enough.

Life continued until the day my fore-feet turned blue and I stopped the atenolol. Holter time. Again. But this time, brain’s improved and I’m medication free.

So to a new place I go, a private lab this time. No hospital zoo with curtains for privacy; it’s quiet with private rooms. After many years of tests and physios/acupuncture, I know how to dress for these things so the tech and I aren’t endlessly waiting for me to reveal the relevant parts of my chest. I stand where ordered, and she wipes top and bottom of my chest clean. Twice. If you’ve never had this done, let me say the first step is OK, the second is like having a cat with a particularly rough tongue lick your very clean, dry, not moisturized skin. That done, complete with ouches and grimaces on my part, sorries on hers, she sticks on several electrodes swiftly, snaps wires onto them, and plugs the wires into a box connected to a computer. Several ECG recordings pop up on the computer monitor as does my heart rate in big red numerals: 125. So OK, I’m a little nervous. My left neck has been paining me on and off with the sunny, high-pressure system that has moved in over Toronto, and I know the increased pain that’s coming. Plus, yeah, OK, what will the docs find, is also in my mind.

Anywhoo, she checks the readings, returns to me, unplugs the wires from the box, whips off some of the electrodes, and leaves five in place. She proceeds to tape me up. You think having electrodes stuck on is bad enough — well, the tape ups the stuck-on-for-life factor. Two to three pieces of tape go over each electrode and the top part of the wire coming off it. She then plugs the wires into the Holter monitor’s wire. The monitor’s wire is long, thick, and grey. This monitor is rectangular on the side; the others I’ve had are rectangular on the vertical. This one shows the time in a thin window. I should’ve gotten a pocket torch (flashlight) to read the time. She placed the Holter in a black fabric case, with just the time showing, slipped a strap through the back of the case, and belted it around me. Phew. Previous Holters had been put in a purse-like case I had to carry over my left shoulder. They’re built like a physics textbook shrunk into a small purse-sized metal box, so you can imagine the weight and how relieved my neck is.

Handing me a folded piece of paper, she instructs me to write down the time — as taken from the Holter (which is two to three minutes off from the right time), not my clock — of what I was doing and the symptom when I feel anything. Also I am to note the times I exercise. I decided to add on the times I do my audiovisual entrainment and cranioelectrical stimulation sessions too. I can see them now, scratching their heads, going wha–? when reading those diary entries. Then dismissing them because that’s what usually happens: my symptoms and activities seem to have nothing to do with my heart, other than the rate rises quicker than usual when I begin exercising.

So they’ll find the usual SVTs (supraventricular beats, aka sudden zipping along of my heart rate), tachycardia (fast pulse, north of 130-140), bradycardia (slow pulse, south of 50), and my average will be…Well, that’s the rub. Hopefully, average will be in the 90s or less.

The whole visit took 11 minutes.

So I put up with the velcro-on-chest feeling for 24 hours, the wrestling with undoing the belt so I could go to sleep without the thing digging into my waist, the wires hanging down from under my shirt, the remembering to record diary entries, the velcro-on-chest irritation, the something-is-stuck-in-the-way feeling when I put my arms together in some of my exercises so I couldn’t do them properly, until it was time to leave the next day to return the dratted thing.

I didn’t rip off the electrodes. I began by peeling off the tape up to the electrode edges. Then, beginning at the loose edge of each electrode, if it had one, I pulled them off slowly, along with the tape. Some of the tape over one electrode overlapped with the tape over the next electrode. That was fun peeling off.

My skin looked OK, all identations and outlines. But tape glue remained in places, and my skin began screaming and turning red with pinpoints of blood. I really, really needed to put a pack of ice on it. But no time. The place was closing for the day soon, and I had to drop off the monitor else pay a $50 fine. So I slathered on my melaleuca-oil cream, dabbed on some more, and left.

I felt so liberated, so free, so light. Drop off took five seconds, and I was bouncing out the door, heading to a bookstore. This is my last time, I swear!

But as bad as a Holter is, 24-hour blood pressure monitoring is worse. Every two minutes, the cuff strapped round your non-dominant arm inflates, squeezing your muscles, taking your pressure. After 30 minutes, you’re ready to run screaming back to the lab to tell them to take it off now. They really should find better ways of measuring these things.

I really shouldn’t read these kinds of stories; they just put me in a bad mood, and I have to admit I tossed the Digest down after it asked the question of how Greene did it — why did he have such a remarkable recovery? How did he defy the doctors’ prognosis of being a vegetable, of being permanently paralysed?

Simple. The doctors are ignorant, and they’re not all that interested in coming out of that comfortable place, using their uninjured brains to help those of us with injured ones have good, productive lives.

Capt. Greene recovered because he received the two most important things for brain injury recovery: (1) full-time rehabilitation over years, for as long as he needed, not for some predetermined prescribed too-short time period; and (2) the unwavering, committed, involved support of a family member.

No miracle. Just what happens when someone gets proper care.

The damaged part of the brain has to “grow up” again. It has to do all over again what happens in the first twenty years of life, and it has to do it with damaged or dead or missing neurons in an environment of bleeding and swelling and perhaps secondary damage too (current knowledge of what happens exactly in the moment of injury and months after is not that clear). The brain does have cells dedicated to reconnecting neurons — and it is a strange feeling when that last connection is made, like suddenly a part of you is plugged in and is no longer off or sparking — but these work very very very slowly. So there will be spontaneous healing. Over decades.

But you don’t have a child sit around, watching TV, expecting it to learn how to walk, bathe, eat, read, write, think all by itself. You teach it. Every single day. The whole day. For years. Even play is teaching. So why would you expect a person with a brain injury to be able to learn all these things sitting around or with one or two hours per week of rehab in only six months to two years (the prescribed length of time doctors opine is the window of healing; as I said, ignorant)? And why would you ignore the fact that a person with a brain injury has to relearn what a child learns in twenty years in way less time? Why would you throw away a life? Giving it back requires effort and thought, sure, but that’s part of a doctor’s job. Isn’t it?

Greene had his “miracle” cause his fiancée Debbie Lepore did for him what we do for our chidren: support them full time, encourage them always, teach them full time. Lepore was really the miracle. A person willing to do for him what she did is a rare bird and the most beautiful one anyone can find on planet Earth. What makes her especially rare is that it sounds like she did it on her own (with professionals doing some of the rehab) with no other family members to spot her.

What makes me so very angry is that most of us don’t receive that. We don’t have families who are willing to make that years-long sacrifice of full-time, hands-on rehab and caring. Some of us even have families who tell us to get over it or that we are thinking ourselves into a brain injury, as if we can reach our hands into our skulls and rearrange neurons.

Worse. No medical establishment is willing to provide that kind of intensive, years-long rehab, especially not cognitive rehab, in Canada anyway, not because of funding but because in their ignorance, they prefer to take the easy route, to think of us as fit only for day programs, not as having the potential to become members of society once again. I fought for my life; but few have my kind of background, and not everyone is persistently stubborn like me, to be able to do that for themselves. I don’t know if I will ever not be angry about that injustice.

Greene is no miracle. He is what everyone with a brain injury should be. Perhaps one day it will happen.

Now, I’m not talking argument here. I’m talking about someone getting upset with me because I merely point out that they should not be so rude on the TTC. Yeah, stupid, eh? There are non-TTC instances too, but the TTC is peculiar for its daily, non-stop hits of injustice.

Injustice: the kind where people see only themselves, only their desire or complaint, only their selfish needs, and don’t care how it affects others. The boor with his bag on a neighbouring seat on a crowded subway. The TTC employee hiding a stack of papers behind him then leaving them there. The young woman who reneges on her part of a bargain, leaving me in a serious jam, because life is sooooo hard. People really, really, really, really, really don’t like having it pointed out to them that their behaviour or their self-lie is not OK. (Of course, when you get a traumatic brain injury, you have it pointed out to you all the friggin’ time, nicely or bluntly, depending on if it’s a professional health care worker or friend. Even worse, you’re spoken to like you’re a moron. I don’t take kindly to the latter. But I digress.)

I have heard stories about or been spoken to about brain injury anger. But never heard about the other side of the coin: how do you react to sudden or sustained in-your-face yelling? And on a lesser emotional level, arguing?

My rehab team told me a story about a young man whose safety they feared for every time he came for rehab. He’d travel on a TTC bus, and the TTC having this knack for turning drivers and passengers into rude the-world-revolves-round-me boors, his moral anger would rise, and he’d say something. He was probably sharp. He may’ve yelled right off the bat. I don’t know. Some people with brain injury chuck phones at the wall when something triggers their anger; others start with a blunt statement. Neither is socially acceptable. Anyway, they feared that one day someone would punch him out.

What I never heard in this story is how he responded if someone suddenly yelled back — not talked back but yelled back in sharp, blowing-hair-back tones.

I had this one experience where the other got angrier and angrier and angrier. She didn’t move right into my face, but it certainly felt like it. A normal person would at least step back. I did not. I didn’t even flinch. My brain became blank. No words came to me; my body had no reaction. I got real still and real quiet. That probably made her madder. Over the years, my ability to argue back has improved so that in an argument, I no longer do that, but I still do it if I suddenly, without-warning get screamed at.

But I wonder: Is not-flinching a good thing or a dangerous non-reaction? Does it make me safer or more vulnerable?

“Take this,” the doctor said, handing me a prescription for a beta blocker called “atenolol.” My heart was doing its usual 120 beats per minute, my chest was heavy, and this doctor was the first in seven years, since my closed head injury, to notice and offer me a solution. I’m not that enamoured of medications, but that week had been one of the worst ever since the injury, and I was desperate for help.

Twenty minutes after I took the first dose, I felt the feeling of stress leave me. What a relief.

We didn’t discuss side effects, which was fine with me. But not discussing even the major ones is probably as bad as those US commercials that list every possible side effect known to man.

Atenolol is not only taken to lower blood pressure and drop heart rate, but apparently medical students also take it before an exam to calm the nerves. Propranolol, another beta blocker, will do the same thing. But other beta blockers won’t, and it is that effect that became the most valuable to me.

Basically, my sympathetic system is in overdrive; my vagus nerve is sluggish. I’m in constant fight or flight mode and only deep breathing counters it. Temporarily. Unfortunately. The atenolol induces a feeling of not being in fight or flight and mitigates the effect on my heart. Plus it gives me a two-hour window of good energy in the evening.

But I didn’t know until last month that beta blockers have a plethora of side effects.

The thing with side effects is that they may come on at the time you take the drug or slide up on you years later.

Atenolol (like any beta blocker I understand) can cause fatigue. When I first went on it, the fatigue from my brain injury was so great that I didn’t much care about this one side effect I knew about. I didn’t feel it. Then as my brain healed, I began to notice atenolol’s fatigue side effect. Big time. This drug can knock you out.

Sure, it’s good to slow your heart rate into normal territory but is it worth lying on the couch for hours?

After starting my “hypothalamus fix” late last year and having great results, I began to ease off the atenolol slowly, knowing doing this in winter time would be tough. Winter is when I take my highest dose of the beta blocker, summer the lowest. (Don’t ask me why there’s a seasonal variation in need – I don’t know and the docs can’t be bothered to figure it out.) Then this past January, early February, I developed some weird skin problems, and I felt like a virus had hit me. Then my right forefoot turned blue. I freaked. Gangrene doth cometh, was my first thought. I saw a dermatologist who listened, spent time examining my skin patches and feet, and wrote that I had Raynaud’s phenomenon. When I googled it, I discovered that this can be secondary to atenolol. Whoa. This information motivated me to stop it immediately.

On the advice of one of my cardiologists, I had experimented with the best times to take atenolol and settled on supper time. (During the winter, I also took it as early as possible in the morning, but not this winter, not after I began my “hypothalamus fix.”) On the day I read about Raynaud’s, Friday, March 4th, I skipped a dose. Twelve hours later my foot regained its normal colour. I decided to stay off the drug.

When I finally got the courage to tell my GP, he asked me if I wanted blue feet or an irregular heartbeat. I said my heartbeat was fast, not irregular. I had long since been discharged by my last cardiologist back to my GP. And so he ordered a Holter monitor to be sure. This will be my, um, fourth? Fifth? I hope it’ll be my last.

Anyway, once off the drug, the surprising thing was my heartbeat did not climb back up to its constant pre-atenolol rate of 120. At first, it climbed higher for several days in a row, going from 80s to 90s to 100s to 110s then it settled down into the 90s. At night it dropped into the 80s or 70s, a good thing. Heart rate and blood pressure are supposed to drop at night. My blood pressure settled down too after a few days to about 122/84 – suggesting there was a bit of a rebound effect from stopping the drug. I also developed a case of nerves about four to five days after stoppage. Another rebound effect, for it went away after two days.

Then a week after I stopped the atenolol, my memory took a leap forward. I remembered the chapter titles of my book Lifeliner, something I’ve never been able to do. Ever. A day earlier, someone commented that I was quicker. And thinner. That was because water was coming off me (and boy, did I know it). Who knew beta blockers cause water retention? Most astonishing of all was that on my first day off it, I didn’t once long for the couch. The next day, Sunday, I didn’t take my usual hours-long nap. Monday, Tuesday, Wednesday, Thursday, and Friday, I didn’t think constantly, from about one or two o’clock on, like I usually do, about lying down, resting, taking a nap. I didn’t have to self-talk to keep going for a couple hours more. And now over a week after I stopped the beta blocker, my sleep patterns have changed and I’m writing more.

Neatest of all, I got spit.

I have also been liberated from the bondage of medication timing. As I mentioned earlier, I had to take the beta blocker at the supper hour. I also had to take it on a full stomach or with Gaviscon, and I couldn’t delay taking it by more than a half hour, an hour on the outside. It was also not a good idea to take it early. Now I’m off it, not having to time my supper and increased-fatigue time is, wow, mind blowing. When I began my “hypothalamus fix” I timed the evening CES Sleep session to begin a half-hour after the evening dose to minimize the atenolol’s fatigue side effects. I no longer have to do that. I can clip on the CES device at a time better for me. More mind blowing. It’s been over a week since I stopped the atenolol, and the behavioural side effects it induced have yet to go. But they are shifting.

The thing is why when I developed these skin problems, and the specialist identified Raynaud’s, did no one immediately think “side effect”? This is what happens to seniors: they’re given a drug; they develop a problem; the doc gives them a new drug to counter the new problem; and no one thinks side effects. Before you know it, the poor person has a basket of medications to take, and their life is all about TV watching and multiplying health problems.

When diagnosing a new problem, look to the simplest solution first – side effect. In me, this was probably masked by the fact that two new problems hit me at once. We don’t know for sure what one of them is, but given how I felt, I’d say it was a virus. The other was definitely a side effect, and it happened to manifest itself at the same time as the virus.

At 3:00 on the Friday morning, I finally figured this out. I woke up suddenly, worried over my blue forefoot, and began to research both the symptoms and Raynaud’s on credible websites, and most importantly, I took the time to think through my new skin problems and the information I had gathered. That’s what’s missing in our health care: doctors taking the time to think through the patient’s complaints and what they’re pointing to. Sometimes it requires extra research and then calling up the patient when they find an answer or some clues. But why would they do that kind of heavy thinking when in their offices with the patient in front of them, they don’t even take the short amount of time needed to consider side effects? When it’s easier to throw a new drug at the patient for the “new complaint”? Just like it’s usually easier to prescribe a pill than find alternative therapies that are safer and more effective but require time with the patient. Or perhaps they are aware it may be a side effect but decide for the patient, sans discussion, that it’s worth it and better to counter it with a new medication.

The other thing I’ve discovered is that the atenolol was masking some aspects of my healing from brain injury: memory gains, energy gains, processing speed gains, productivity gains, heart rate improvements, chest heaviness improvements, inner organs working (more) normally and efficiently once again (man, is that ever nice), among others. The suddenness of these gains is either coincidental to me stopping the atenolol or a direct result. It makes more sense logically to me that it’s the stoppage.

The moral of the story: remember why one is put on a drug in the first place. If I develop a new health problem, even years later, look first to see if it’s a side effect or interactions of several drugs – a process taking minutes – then if me and my GP can rule that out, look to other possible causes. The KISS principle applies to medications too.

I highly doubt I’ll go back on the atenolol, whatever the Holter monitor results are. I ask myself: is length of life more important than quality? Is living a few more years worth it if the price is having to will-power my way through tasks and spending hours on couch time instead of on writing time, reading time, socializing time? For me, the answer is no. It is not.

I didn’t want to hear it, though true. When I first became injured, I had a series of homemakers and a series of colds. In the beginning, when the homemakers came from VHA, they were professional. They came in, whipped on their working coverall, and washed their hands, complete with soap. Later, when they came from another place, washing hands was, well, not exactly par for the course even though they went from one sick person to another injured person all the day long. And I got colds. And they hung on.

I didn’t ever remember colds hanging on that long before I was injured.

Or taking weeks to recover from.

Worse, every time I finally recovered, I got another. And every time, I got one, I became so unutterably tired, I could not exercise, not even the little I did as my shoulder and neck sprains and strains healed. And every time I got a cold, my brain-injury healing progress became retarded; my cognitive functioning dropped. The couch and TV became my daily friends. I became fearful of colds and other infections, especially the year I was laid so low, my progress turned into regress.

Yes, when you have a brain injury, even a cold will take you out for weeks. It will lay you down, and only a month after it leaves, will you be able to rise again. Slowly.

And so after many, many months of remaining virus-free, I was not happy this past January 24th when I picked up some sort of weird bug that made patches on my skin, burned my hands, and pained my feet. Then turned into endless peeling, of revealing tender new skin, yet continuing to callous up the old. Weird. And I absolutely was not happy to be reminded of this maxim, that to be brain injured means slow recovery from viruses and bacterial infections too.

But what can you do?

Rail against the inevitable or just go with the flow? This time I kinda did both. But a miracle happened too, and perhaps it was of my own making, from all the work I had done with my “hypothalamus fix.” Unlike previous infections, this bug did not stop my exercise routine cold. Sure, my muscles refused to do the full work, but they did not entirely grow so weak that I could not do even one second. And my mind, though it regressed cognitively and emotionally (meaning my affect went back to being unresponsive), did not completely go blank and seek TV or endless naps.

Unfortunately, that did not affect my recovery period. The virus left me over a month ago. I woke up one Friday morning and did not feel that rundown feeling of something infecting me. But still, it was a month before I felt back to my old self. Unfortunately, all the tasks I had dropped when I became ill remained waiting for me, and the passing of weeks had only grown the pile. That was another familiar frustration, of seeing the things left undone and wondering how I was to do them. Fortunately, this time I had help. My therapist.

I am better now. Daily, I continue to take Cold-FX, the one thing that reduced my susceptibility to infections. I continue with my “hypothalamus fix.” And I try to remember to grease up my palms and fingers with cocoa butter and wear gloves so that my hands can return to their old sensitive but tough selves.

But my reading has taken a jump recently. This year, I’ve started remembering whodunnit in some of the Agatha Christie novels I’ve read several times over the past few years (I read a lot of Christie too before my injury); not yet though for those books I’ve read only once, maybe twice. So it’s time to take the next leap. I need to find a way somehow to try reading tougher books and to read more often. Prior to my injury, I kept myself on a diet of three mystery or sci fi books a week, five if I couldn’t stand it, each read in a gulp of one sitting. In addition, I read books in preparation to writing and marketing my book Lifeliner: The Judy Taylor Story; I usually had one work of literary fiction on the go. And it goes without saying, I read magazines, newspapers, newsletters, and anything else I could get my hands on. These last few years have been bitter, with my ability to process, understand, retain, synthesize with previous knowledge, and put into long-term memory so compromised. The web has exploded with reading materials; my pre-injury me would’ve been happier than a pig in a truffle patch. Me, it’s been a combo of yearning and failing and total exhaustion after only a short time of reading.

But I bet I’m better at it now than I think I am. It’s just that I need some motivation and a way to get me to practice practice practice. I’m hoping Goodreads is it. I already have uploaded all the books in my iPod library app and have begun adding to my friends list. The Goodreads iPod app will be better than my old library app at helping me find books I haven’t read when I go to the bookstore. The status updates from the friends list will hopefully inspire me not depress me. And knowing my status updates will be seen, even if only by one person, will hopefully get me to read more consistently. It’s like weight loss: track your weight and size, keep others informed, and the weight is more likely to come off. Here, I will have the tools to track my reading, even down to what page I’m on on any given day, to keep others informed, and so the reading is more likely to happen.

Plus I finally claimed my author profile! And I have a 5-star review for Lifeliner! Now that’s incentive to keep reading so I can keep on improving my writing. So go on, have a gander at my Goodreads profile and become a fan if you’re a Goodreads member!

It’s rather poignant I complete this task 11 years  to the day and date when a multi-car crash rendered my brain – and me – changed forever.

I became a new person. The person that I was died that day. The music I liked changed that day.

But it’s been a long time for me to admit it to myself, never mind anyone else. I used to be a huge – I mean friggin’ enormous – Beatles fan. My first album, back in days of vinyl, was one of theirs. Yet I haven’t listened to The Beatles in years. I have all these CDs; I put their songs on my iPod; yet I skip over their tracks when they come on. I don’t get it.

Well, I should. It’s called a personality change. And just as I’ve almost adapted to my changed taste in clothes, it’s time I faced my new taste in music. The problem is when one has little money and not much energy, it’s a bit difficult to browse and listen to the infinite variety out there in an effort to decide what I like. One thing I know: I like trendy stuff (the old, dead Shireen just shivered in her grave) but not the sappy pop or whatever that is that comes out of the US. Tunes like Nelly Furtado’s, Madonna, and, dare I say it, Britney Spears. There, I said it.

Now that my new laptop got me to organize my collection, it’s time for me to figure out what I like…well, maybe later. Right now, I have more laptop setup to do. Getting a new computer at this time of year was genius. Computers suck up your attention and divert your emotions from crappy days like today.

Tammy DeSousa drove car #1. I remember it as red and small. Normand Landry drove car #2, the one I was in, the one that, lucky ducks that we were, got hit the most number of times. Kimberley Best drove car #3, an old one as I remember, the one that shocked me when it, from my perspective, came out of nowhere and banged into the rear of our stopped car. That memory makes my hands shake to this day. I was busy composing a scene in my head after having a near scare of almost hitting the car in front of us, Tammy’s car, as everyone ahead braked hard on the downhill of Highway 7 near Islington. There’s a sign at the top of the hill that tells drivers to SLOW THE FUCK DOWN. Well, OK, maybe it doesn’t swear at them, but the warning sign should have, the way the road was at night, at that time. Carla Marchetti drove car #4, the same kind of car I was in, a brand new one. I had just put my left hand up to cradle my neck, fearful of having had another whiplash injury, when she smacked into the back of Kimberley’s car, and he hit our rear again (and oh yes, Kimberley is a man. I know the lawyers kept exclaiming over it, but really people Kimberley is also a male name, get over it, I felt like telling the lawyers.) I went from shock to bigger shock. I don’t know how one does that. I could not believe we had been hit a second time. But my mind froze, my body froze, and then I was in an emotional storm, which when it passed was pretty much the end of my emotions for many years, except for the odd time when they’d burst out of their prison and take me for a wild ride. Anyway, either Kimberley or Carla pushed us into Tammy’s car, I don’t know which one. But I was told later, I had had three impacts to my brain.

Except for Landry, not one driver ever expressed his or her remorse for what they did to me. I understand that lawyers and insurance companies frown on apologies, bad, bad human-healing things that they are. But when the lawsuits and claims were over 8.5 years later, there was nothing stopping them. Of course, they may have forgotten all about it by then because, unlike the injured, the perpetrators and uninjured are not really involved after the deed. They show up at a legal Discovery for 45 minutes or a couple of hours and then again at trial, if there is one, and that’s pretty much it for them. Us injured, well, we endure years of crap: the numerous assessments, the mediations, the bullshit, it all goes on and on like some freaky, wicked energizer bunny. You think paying car insurance premiums is expensive and a pain; try making a claim, a legitimate well-backed claim. It’s a special kind of hell, and for us Canadians gives us a taste of what it would be like to have private health insurance instead of medicare. I value medicare more today than I did before my injury, not the health-care part, but the not-having-to-worry-about-the-finances part and some dickhead-bean-counter-determining-my-health-care part.

When I signed the settlement papers, I grumbled to my lawyer that no one had been held to account for the harm they’d caused me. He said if it makes you feel any better, they will be paying the highest insurance premiums. I doubted his certainty. I knew from another incident before this crash that the worst offenders get tossed from private insurance onto government insurance – I had no idea government had car insurance – and will suffer just from that as government, back in the 1990s anyway, had the worst claim record of any insurer. I thought that if what my lawyer had said was true and even better they were tossed to the government and had  to make a claim and suffer that kind of special Hades in addition to any injuries, then maybe there was some justice. But I doubt it.

I can hear some saying to me silently, forgive them, it will make you feel better. Move on. (Gag me, I hate that phrase, it’s so full of false, reality-negating BS. One adjusts; one does not “move on.”) Well, no, forgiveness doesn’t make you feel better. All it does is allow you to live without thinking of them, being angry for the injustice, every day of your life. I forgave a long, long time ago. Anniversary days, of course, are different. But by tomorrow, I will have gotten through today…well, perhaps not, as memories of what happened on Sunday 11 years ago will probably surface. Well, OK, in a few days, I will have forgotten in the way I do and be living in the moment of the days to come, in the way that became the new me after the crash. And maybe next year, this day will be just another day.

“1 a the faculty of perceiving.” Canadian Oxford Dictionary

Perceive

“1 apprehend, esp. through the sight; observe. 2 apprehend with the mind; understand. 3 regard mentally in a specified manner.” Canadian Oxford Dictionary

Perception has been in the news this week, although many mayn’t have seen it that way. In Arizona, a man shot a number of people killing 6, wounding 14, including Congresswoman Gabrielle Giffords, his rather skewed way of perceiving the world urging him on. Later this week, in Toronto, yet another confrontation occurred between a man and the police; the man couldn’t see why he had to get out of the car, and it took them two hours to convince him. Luckily, the police didn’t shoot; instead they sought the guidance of a forensic psychiatrist. When the man finally opened the car door, he had to unfold himself as he is an imposing 6’7”.

The former young man was identified by his college and friends as “obviously disturbed,” possibly due to brain damage after alcohol poisoning, but no one troubled enough to help him get proper care. I heard on CBC radio this morning that Arizona has the second-worst health care for mentally ill people in the US, so maybe it wouldn’t have mattered anyway. The latter Toronto man had recently had his meds changed but a patient advocate had told him that he didn’t have to take them. It was his right to refuse, and I heard that his doctors had no clue if he was taking them or not. Behind both news headlines, the brain damage or illness interfered with the men’s ability to perceive, and so we have dead people at one end of the scale and a closed-off street and intensive use of police resources at the other end. Both cases illustrate why putting rights and privacy ahead of health and safety is deadly stupid. It’s predicated on the idea that people with damaged perception are as capable of perceiving – observing, seeing with the mind, understanding – as those with undamaged brains. Dumb.

Not everyone who is mentally ill or has a brain injury has damaged perception. Not everyone has complete damage. But when someone who is raving about grammar causing the ills of the world, it’s pretty clear their ability to perceive is royally screwed up. When someone obeys police slowly, as in the recent case of the brain-injured man kicked in the head by the beyond-stupid-going-into-criminal-assault-territory RCMP, it’s clear their ability to understand may still be there but is in slow mo, and we must give them patience. It’s the human thing to do. When a person diagnosed with schizophrenia or major depression or a brain injury does not see themselves as ill, there’s a perception problem. Some identify it as self-awareness, but that’s just one part of the ability to perceive. If the ability to perceive oneself is diminished, then that may also affect or be concomitant with diminished ability to understand body language, verbal communication, written language of others. It makes it difficult to talk to such a person, to make them get it.

Then there’s the ability to perceive one’s own body. I had the oddest experience when I first sustained my closed head injury. When I lay down for physiotherapy, I was convinced I was crooked: head facing one way, legs the opposite, arms not straight. Yet the therapist never shifted me so I thought, well, I guess being crooked is OK. I finally asked her if I was straight. She said, yes, like what a weird question to ask. I decided then that when I felt crooked, I was straight; when I felt straight, I was crooked. That has gotten largely better over time. Although that was weird, as in freaky weird, my inability to perceive situations around me was more problematic. You see, my perception, well, felt normal to me at the time. Yet each month when my perceptual abilities improved, I’d look back and go, where was my head last month?! But in that month, I’d think, OK, I’m healed now. Then the next month realise, uh, no, not really. Still, my ability to perceive wasn’t completely damaged. I often had no problems assessing situations for what they were, and that would be confirmed by the professionals. So how to know what was skewed, what was not? I finally got to the point that I decided I would look for cues from other people or take my time before assessing anything before I tried to make a judgement based on my perception. When the months finally came where there was no change and none of my perceptions differed from the professionals, I knew that that part of the brain injury had healed itself. Funnily enough, from the beginning, my self-awareness remained intact. I know because everyone who worked with me from occupational therapist to psychologist raved about it. It got a bit tiresome actually. Apparently, it’s a rare trait to have when a person has sustained a brain injury. Even after months and months or years of rehab, of working with professionals and family who tell the person that they are having x,y,z problem, the injured person cannot perceive their sight or reading or walking or mood problems.

I don’t think you have to have a mental illness or brain injury to be missing self-awareness. It amazes me how so many go through life without once putting mind to self. At worst it may be annoying to the people around you to be so blind to yourself. But if you have an illness or injury, lack of self-awareness at best leads to a wasted life of bad health and at worst to dead people. Without self-awareness when you’re sick, you can’t get the help you need and you can’t understand how treatment is helping you. So why would you stick with treatment? Why not put rights ahead of this “awful” medication with its side effects? Without being able to perceive the people around you, what they’re saying, what they’re meaning, you can’t have rational conversations, you can’t sustain meaningful relationships, you can’t hold down a job, and you will hear them say or see them do things they’re not. That’s when you most need to rely on the people around you to get you back to health. Some are lucky enough to have such people, but the system has interfered mightily with people helping people.

But then I think of the man whose mother said he had talked himself into a brain injury. Oh-kaaayyyy. And then I think of the neurologists I’ve met whose ignorance of cognitive deficits is breathtaking and other health care providers stuck in a rut of non-healing methods for brain injury, whose patients clearly are not getting the best care. It’s family members and health care professionals like that who have led to the rise of patient advocates and a mental health care system that puts rights above health and safety. That has led to masses of sick people living homeless on the streets or in hidden desperation in rooming houses or apartments like at St James Town. And it has also led to the collective washing their hands of their responsibility to the vulnerable among us, for all the healthy see are raving rags and people in jail. The government will take care of them.

The perception problem lies on both sides.

When we learn to perceive the problems in perceiving, “ours” and “theirs,” we resolve this impasse and take care of those who need our Good Samaritan instincts.

My goal with devising my hypothalamus fix was to reduce body temperature and water retention; improve sleep and skin health; and get rid of the atenolol. Initial unexpected results included eliminating brain injury anger, reducing irritation significantly, stabilizing mood, and improving exercise tolerance. I began using my therapy consistently mid-September. The initial effects were promising. All my goals began to be realised until I had a setback at the end of October/beginning of November, and then as I was recovering from that, the winter weather set in. Winter is key because normally my atenolol dose will double during the cold season. By January, I am usually taking 50 mg in two 25-mg doses, about 12 hours apart. (Atenolol not only drops blood pressure and heart rate, but also stress symptoms, like shaking hands and feelings of being stressed.)

Although body temperature dropped a lot initially, since November it’s been back up. But at least it’s not back up to old levels. I can still take hot showers; I still do not need to use cold water to cool my skin. Water retention varies, in direct relation to stress, as in too much exercise, difficult cognitive tasks, or emotional stuff. But my neck is still thinner. Awesome. Skin health remains good.

All the brain injury anger, irritability, mood instability improvements remain. There have been no setbacks in those areas. Even better, my mind is becoming sharper. On New Year’s Day 2011, I remembered who dunnit and some details of how in Agatha Christie’s Murder in Mesopotamia, a book I’ve read several times before, and each time had no memory of the plot, who did the murder, and how. I had given up on seeing any improvements in reading and memory. So this sudden change was a delightful shock. Then yesterday, I went to the first theatre event in which I followed the story, stayed focused on, remained engaged with, remembered, and most of all enjoyed for its entire length. It was an operetta too: Die Fledermaus.

Exercise tolerance continues to improve regularly. Usually for me to increase reps or total time exercising takes effort and convincing myself I can do it. But since I started this therapy, every improvement comes spontaneously. One moment, I think I’m going to do my usual 10 reps, the next I’ve done 12. One moment, I think I’m heading for my usual 16 or 17 or 18 or 19 minutes, the next I’ve done 20 (as of January 3rd) with all the little incremental increases. It’s mind-boggling.

The exercise tolerance thing is big. It’s difficult to keep a good weight and to remain fit when one’s brain injury has made it so that exercise brings on unpleasant or even dangerous physical effects like high body temperature, water retention, a fast heart rate that increases as soon as one begins to move, and so on. When even walking to the TTC stop one over from your local one can bring on unpleasant consequences, that affects your quality of life too. Unfortunately, only some trainers seem to know about this effect. Doctors do not. Or not any I’ve met anyway.

I had been concerned this therapy may be increasing pain. But over the long term, by mid-December, pain was dropping. I realised this mid-December when I didn’t have pain when I should have. Certain situations or weather conditions or activities will increase my neck pain, guaranteed. Neck pain inevitably leads to migraines. I have learnt how to use the long alpha session on the audiovisual entrainment unit (AVE), arnica cream, heat, and rest to stop the pain at the point where I catch it. But these measures don’t usually eliminate the pain; that comes with time, three days at most, overnight at best. But in mid-December, I realised I had done something that should bring on a migraine, but it had not. Then a few days ago, I developed one of those burrowing, sharp focal pains in my neck. It had been so long since I had had that happen, I completely forgot about my pain-relief strategies, and I didn’t remember to do them until the next day. That would normally guarantee three days of migraine and neck pain moving from side to side from one day to the next. Not this time. I threw all my strategies at it; instead of progressing, it was gone by the next day. Unfortunately, it continued on the other side a few days later. Again though, strategies reduced it. And right now, it’s gone but in that space where I gotta be careful not to bring it back. My overall body pain is the same, and I continue to have to use arnica cream daily. I’m not sure I will get rid of the body pain as long as I’m increasing exercise regularly and my sharper mind is leading to doing more on the computer. But perhaps I’m not paying as much as I would have without this hypothalamus therapy.

Except for exactly two days, I have reduced my evening atenolol dose to 1/4 of a tablet, that’s 12.5 mg, and I still am not taking a morning dose.

Since December 27th, I’ve moved my 1-hour evening CES session to doing it half-an-hour after I take the evening atenolol, about the time the medication’s fatigue side effects usually kick in. It doesn’t seem to entirely get rid of the fatigue side effects, but sometimes it may reduce the length of time it lasts. However, it’s much easier to do it. It was getting a bit much at bedtime to get the CES session done before having to start the sub-delta AVE session. I was feeling time stressed. Plus having to do both, almost back-to-back, interfered with my evening reading. I like doing my more-difficult reading just before bed since it helps to tire out my brain, and it means I get some reading done regularly. I haven’t returned to that reading habit yet. But overall I’m feeling better.

I have recently adjusted my weight loss regimen. Water retention is a serious impediment to losing weight: water increases one’s weight and masks fat gain as well as fat loss. How can you feel good about losing weight when you don’t know you’ve done it because it happens at the same time as your body suddenly retains a kilo or two of water? On the positive side, I’m finding my runaway appetite is losing it’s steam, enough that eating fewer calories doesn’t leave me feeling very, very hungry. Emotional eating was part of that; but also, people with a brain injury will eat whatever’s in front of them, and you never feel satiated. It’s an odd combination of perception that doesn’t see what’s actually there and this beast taking over so that you can’t stop. I guess that’s a lack of impulse control, which infects every aspect of life and is pretty typical for a person with a brain injury. Nobody told me about this danger. I had to learn it for myself and start using smaller plates. But restaurants with their abnormally large portions remained a pitfall. No longer. I think. I hope.

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Note: I write this to share this information with others and to get the conversation going, but I do not write it to suggest that it will work for anyone else.

Part 1: The Hidden Secret of Brain Injury: Hypothalamus Dysfunction

Part 2: The Hypothalamus and Brain Injury

Part 3: A Hypothalamus Fix for Closed Head Injury

Part 4: A Hypothalamus Fix Followup

But then a funny thing happened about 7:40 pm today as I began reading Chapter 12 on page 84: I began remembering whodunnit and the gist of how. WTH? My first vague sense of whodunnit appeared in my mind on page 74, at the discovery of the body, but suddenly on page 84, I knew, I knew the memory was coming back, like seeing Star Trek’s Scottie first appear in the transporter beam on the Dyson’s Sphere – you know it’s a man but not who. Then the memory of who becomes clearer and clearer with each sentence read, and with it the certainty that I remember right! The memory of how is limited to where but not in detail how. But that’s way more than no memory at all, which is where I was at before pages 74-84, where I always am right up to the reveal. Holy cow!

Remembering: huge milestone.

Spontaneous healing after closed head injury is like that: suddenly you can do something that the moment before you could not. And it always takes you by surprise. The fact it’s in reading is rare and amazing. Yay!

- Posted using BlogPress from my iPad

Some recover quickly; some more slowly. Some get the help they need when they need it; some think they have gotten it or don’t realise they need it immediately. And if it’s your first time, unlike me, you have a much better chance of getting better and rejoining society, doing such things as full-time work and going out with friends. Of all the consequences for me, the worst is not being able to rely on my own health, my own stamina so that I can make plans and know I’ll be able to get them done. Without that ability, you can’t work full time, or even part time. You can plan up the whazoo all you want, but when your body says nap time, crash-on-the-couch time, willpower and plans won’t prevail. You have to cancel commitments, and it sucks. Worse, when you have a brain injury, the abilities we take for granted, that we don’t even think about, abilities such as being able to set goals, schedule the tasks, make them happen, get up and go, take so much effort to regain, if you’re lucky, and need a lifetime of assistance and compensation, which will never completely replace what you had. In other words, you really have no control over your destiny because that which gives you control is gone. Poof. In a cloud of selfish, self-righteous pricks who behave as if the road belongs to them and no one else.

I know clearer than ever on this first day of 2011 – each year, it’s like the fog lifts just a little bit more – what my goals are, what I’d like to do. But how, is the question. Where will my energy come from? Where will the stamina required? How will I ever be able to decide on what comes first or more likely second, as I think revising my 2010 NaNoWriMo novel comes first. But beyond that, what tasks are more important? How do I balance want to do with need to do, and how do I distinguish between the two? And the person who guides me, will she be able to help me keep my long-term (ie, 6-month) goals in mind while I work on my weekly priorities? They kinda got lost in 2010. But then, because of her help, I’ve never been so functional, so productive in setting realistic weekly priorities since that dreadful innocent-looking day 11 years-less-than-2-weeks ago.

That’s what hit me the hardest when I read my friend’s email: how little we understand the hell that is to come. We think these are minor injuries, just sprains and mild concussions. They’ll go away. Get a little bit of treatment, work hard at rehab, and in no time, we’ll be back to work, back to school, back to our writing/music/office drudgery. But as the weeks unfold, the horror of a radically changed life reveals itself. The future turns from lush pastures which we can take care of and frolic in, to overgrown grass, malicious weeds, and endless thick, grey clouds. Yet still we do not see the fullness of the horror. No, that takes endless tries at doing the things we used to do so effortlessly, thought-lessly, and failing every time. That takes the scary view of a dwindling bank account. That takes the day we dip our toes into a normal work scene in a year we think everything is getting better and discover we no longer have the cognitive skills to navigate meetings and that unless we get real treatment, we’re fucked for life. And there is no real treatment in the medical arena, not for “mild” closed head injuries aka concussions. That is terrifying to face.

That is why I don’t understand how people can live that and not go haring around looking for answers, like I did. Desperation drove me. It was that simple.

What I am discovering is how unusual I am in being able to connect dots and seek solutions, in not settling for a desperate life, in not caring where I find advice or help from, as long as it makes logical and evidentiary sense. I learnt of someone recently who had banged their head and injured their neck, but had never connected that (friggin’ obvious) dot to their neck pain and constant migraines. Nor did their docs. Seriously. I also have heard many a complaint about muscle pain or muscle injuries, yet when given the knowledge they need to get help, won’t seek it – unless their doc says so. But then they do have to go to their GP, and they do have to have a GP who knows something about soft tissue injuries and that there are specialists out there called “physiatrists” who know exactly what to do for soft tissue and nerve damage. (I lucked out, I think, with mine. He knew all about them, being the official doctor to a boxing team years ago.) Of course, as long as the general non-rich population doesn’t have access to the kind of aggressive, daily treatments athletes do to overcome soft tissue injuries, we will never maximize the potential for full recovery anyway.

I also have spoken to people with brain injuries/strokes or their caregivers, who have seen the remarkable improvement in me, despair at their own difficulties, but will not immediately pounce on the knowledge I’ve gained, the knowledge I share with them, and try to make things better. I understand why people with brain injuries don’t – it takes years to make a decision – but not why those who care for them don’t.  They have no such cognitive issues. My therapist told me recently that most people don’t want to listen to advice; so much so was that her experience, that when we came to that step in the problem solving method she was showing me, she was about to skip it when I said, hey, wait  a minute, that’s important.

I did not get to where I am today on my own. I did it cause I listened to advice and sought it wherever I could, whenever I could, and took the good stuff, while ignoring the BS. Just because there are an awful lot of people who live with their heads in the sand and say I should just get over it or it’s been long enough now, doesn’t mean I should listen to them.

The biggest problem I find in seeking advice is many don’t have it, don’t want to learn in order to share it (if you have a brain injury, you need people around you willing to learn the stuff you cannot), don’t want to stick around for the long road back. The one person who has, the one person for most of us who does, is my mother. (I heard of one whose mother said you’re thinking yourself into a brain injury. Lovely.) It’s been mostly me teaching her, either directly as I share or indirectly as she’s learnt to adjust to my, um, quirks. But lately she’s been taking that knowledge and using it to help others or even help me in my dealings with others. Effing amazing. Proves my personal university-era thoughts: age doesn’t fossilize your brain. Inertia and fear does.

Shortly after I wrote about the fix and my early results, I had a setback. Figures.

I had planned on having a week’s rest before I began National Novel Writing Month — a month of writing a minimum of 1667 words every single day during the month of November. It’s a gruelling but fun, frustrating, fantastic experience. Given my lack of stamina and energy, I knew I needed to rest before beginning it. I didn’t get that week of rest. Before I detail what happened, you need to know that after brain injury the brain is not flexible, meaning unexpected stuff tends to put it into freeze mode and a sudden change in routine leads to frustration as one struggles to adapt. It’s like fighting one’s brain. So. First my Internet went down for four days straight and every time I called, they wanted me to go through the same troubleshooting steps because Bell said they’d fixed it (Bell said that to me too about my voice plan in months past and were just as wrong). Then my dishwasher broke, got fixed, broke, got fixed, well, you get the picture. I discovered I still am unable to physically wash dishes without compromising other functions like cooking or writing or working on photography. So the dishwasher had to be either fixed or replaced. And then my brand-new dentist told me I kept developing cavities because the atenolol dries out the mouth, which reduces remineralization of teeth, hence increasing cavity formation like crazy. Too bad my previous dentist neglected to mention that was a problem and to prescribe the remedy, a simple daily rinse of fluoride. Money flew out the window. Stress levels rose astronomically. Brain went gah! And my body temperature went soaring back up and my edema returned just as I began National Novel Writing Month. Peachy.

But I didn’t give up my fix. I tried to increase the intensity and length of CES sessions to compensate for the added stress. But I don’t think that helped; it was too much stimulation. I am now at one hour of sleep CES at the highest or less of the first level of intensity and 40 to 45 minutes at 10:00 to 10:15 pm (I can’t always get it on right at 10) at the same intensity level as in the morning. I’ve increased the visual intensity level of the sub-delta AVE session from 4 to 5. The audio intensity remains the same.

Interestingly my exercise tolerance continued to increase, my mood didn’t destabilize back to old levels, the improvement in brain injury anger and irritability remained, my skin was hardly reactive, and my regular diabetes checkup showed that it was finally under control (well, except for triglycerides but that was probably because I hadn’t been able to drop enough weight yet, and the edema did not help). I also managed to make the decisions I needed to make even while I wrote almost every day. By mid-November, the crises were over, and in the first two days of December my edema started to drop. As for my body temperature problems, I am no longer quite so overheated at night, but I continue to have problems. It might be complicated by thyroid issues. So that’s something I’ll have to keep an eye on.

As for side effects, brief temporary dizziness is normal when using the AVE or CES (as it drops blood pressure, so no getting up fast right after an AVE session!), and this was no different. Gradually over the last couple of months, my pain levels have increased. This could be for a variety of reasons: as my hypothalamus works better, I am doing more (though it doesn’t feel like it) which puts more strain on my back; as I exercise more, my back is feeling it; the electrical stimulation of CES somehow makes my muscles hurt. Or it could be the opposite of something odd that happened back in early 2007. That January, when my edema increased exponentially, my pain dropped way down at exactly the same time. If my theory is right, the edema is due to high levels of circulating cortisol, and steroids are great at reducing pain. So as cortisol drops back to normal levels, reflected in edema going down, the underlying pain paths will spring back to life. In the end though, I don’t know why I have more pain. I can only work at keeping the pain down through my traditional methods of arnica cream, massage, acupuncture, alpha sessions on the AVE, and of course chocolate.

Meanwhile I’ve been able to reduce the atenolol. I no longer need it in the morning, and I’m decreasing the evening dose gradually. I still hope to get off it totally. And I hope that somehow, some time, a researcher will be interested enough in my experience to study if it’s real or coincidence, what is necessary, what is coincidental, and take objective measurements of before, during, and after.

———————-

Note: I write this to share this information with others and to get the conversation going, but I do not write it to suggest that it will work for anyone else.

Part 1: The Hidden Secret of Brain Injury: Hypothalamus Dysfunction

Part 2: The Hypothalamus and Brain Injury

Part 3: A Hypothalamus Fix for Closed Head Injury

Part 5: A Hypothalamus Fix: Second Followup