The Error message reads: “Whoops! No publishing allowed. This lens is currently locked for a violation of our Terms of Service, as per the email we sent you. You’re welcome to a) Grab your content and take it elsewhere, if you’d rather not continue with Squidoo or b) Review your content and make edits here in the Workshop to improve the lens. But you won’t be able to Publish the lens live until you can demonstrate that the violation has been addressed. Thanks.“

I wrote this how-to lens on autographing books for authors almost four years ago. Squidoo decided three days before Christmas 2011 (when book sales spike) that my article was  — pick one, your guess, they won’t tell, shhhh — pornographic; contained profanity; spammy (guess too many copies of Lifeliner in my pic); something they couldn’t support cause, you know, authors autographing books for readers is so … well, words fail me; a “doorway” lens  to affiliate programs like promoting authors autographing their own books; unoriginal (all those hours I spent writing and polishing was just, well, meh); article spinning (whatever the heck that is, but if I don’t know what it means then I must’ve done it, eh?); and plagiarism.

I’ve been down the false accusation of plagiarism road with Squidoo before.

They sent a nice note saying sorry, it was a “false positive” after I found the plagiarist of my article that they blocked last May. They wrote that they would greenlight it so it wouldn’t happen again, but they didn’t think to greenlight the author, namely me. They seem to have a default stance that Squidoo authors plagiarize and so no point telling Squidoo authors when their work is plagiarized, just cut out the articles. Some site.

Squidoo also wrote in their email to me dated 22 December 2011:

“We aim to support high-quality, original and useful lifestyle content that real readers will be glad to land on.”

Yes I can see how comments like these most recent ones would mean readers were not glad to land on it:

“i like this..” Oct 24, 2010 5:14 pm

“I will release my first book and it is all about my experiences as a mystery shopper. I found this site very informative and I am so excited to sign my book to someone who will really appreciate it. Thanks for the signing guides and more power” MysterySh0pper, Dec 11, 2010 6:32 am

“Thanks for the ideas….my first book signing is coming up in a few days!! http://map-thenovel.com” nitronarc, Feb 21, 2011 9:23 pm

“A lens about how to autograph a book: now I’ve seen it all! I am impressed with the research you did! (I’ve never had to autograph a book, but I have had to autograph the CD copy of an ebook!)” TravelingRae, Jun 18, 2011 12:16 am

This week, after I finished revising my novel and finally had the energy to deal with this company and do their work for them, I searched for plagiarized words from my autographing article, and it looks like it was copied elsewhere then possibly taken down or made invisible. Although Google shows other sites as having plagiarized my article, the sites themselves no longer show it, as far as I can tell.

Violations of my copyright are the only thing important to me.

Then I also noticed all my Squidoo lenses on installing and using Ubuntu were taken down. I can’t be bothered yelling at this stupid company again. If it doesn’t have the ability to know which writers are original and to see that it had screwed up before with the same writer, it’s not worth the effort to tell them. I know I said I was going to take down my Squidoo account last time they blasted me with their spraying figure-out-which-term-you-violated-then-maybe-we’ll-talk gun. But didn’t. This time I am.

There may be orphaned links on my website to my old Squidoo lenses once I’ve cancelled my account. Please let me know if you find any.

Last time, they only made nice because I blasted them back and reprimanded my copyright violator — thanks for the help Squidoo in telling me about them and helping me demand they take the plagiarized copy down, not — but I was mollified. This time, I don’t see why again I have to be treated as guilty until innocent. If they default to that position, then they have a problem with their contributors. From telecoms to Squidoo, I’ve had enough of behemoth companies banging their weight around. I quit. Writers looking for autographing advice — and my other former Squidoo essays — can come straight to my own website, thank you very much.

"We're lucky to have you around."

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.

“Now listen, you who say, ’Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’

’Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes.” (NIV James 4:13)

When you’ve had a brain injury and life has been turned upside down and inside out and over-hard, you tend not to think about life goals. And long-term goals are about what to do next week, for next month is barely perceptible, and anything farther away than that is incomprehensible. It isn’t just because time and how I perceive it has strangely changed, it’s also because twice already I’ve had my dreams severely disrupted because of car crashes. I don’t feel like tempting fate again.

But my therapist, the one who helps organize me and keeps me on track, decided in our last session that we were going to set writing goals for me, real honest-to-goodness goals like other people, like normal people who don’t expect life to go into the dumpster without warning, making one’s goals a joke. Today, on the first working day of 2012, I’m thinking “you gotta name em to claim em.” And so here they are. But first, an introductory word:

National Novel Writing Month (NaNoWriMo) provides the motivation and initiation I lack to put what’s in my head into action. A novel or book is a big undertaking, and computers and iDevices aren’t up to the task of making that kind of writing happen. An AI would. But since that technology isn’t in my realm yet, NaNoWriMo works plus I’d rather be part of a community, it’s more fun. (Yes, I wrote that, me the one who loves her artificial thinking machines!)

Knowing this, my therapist suggested we plan around NaNoWriMo:

NaNoWriMo has three events throughout the year: the big one in November (NaNoWriMo) where the goal is to write a 50,000-word novel; Script Frenzy in April where the goal is to write a 100-page screenplay, play, graphic novel, or similar; and Camp NaNo in June or August. I’ve done the first two but not the last one.

I will write my main novels in November during NaNoWriMo. I will then spend the following four months revising, getting feedback, having it edited, and finishing final revisions before April. Gulp.

In April, I will write a play or work on one I’ve already done, the idea being it’s for fun, to hone my skills, and maybe down the road, for publication. But mostly in the total spirit of NaNoWriMo, which is to create for creation’s sake.

In June or August (I think we said August…), I will write another novel, but something easier, lighter that will take less time to revise. I usually use the summer months to outline and prep for my November writing, so this might be a squeeze. On the other hand, it seems that each year, my outlining gets moved closer and closer to November. I’m feeling quite nebulous about this goal, but as it gets closer, I should, with support, be able to grasp it and make it work for me.

So there you have it: writing goals. Scary.

Friends and Readers:

May your end-of-year
Be happy

And 2012
Be blessed

And your tastebuds be acquainted with good macarons.

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.

That’s what I told myself.

Yup.

I was determined to start the first week of December.

Yup, determined.

Didn’t happen.

Fatigue and appointments kind of got in the way. Or so that’s the excuse I gave myself. But during a stern session Monday with the therapist who helps me set goals and figure out how to organize my schedule to meet them, I recorded in my iPod Pocket Informant calendar that today I would start revising. Easier written down than done.

I began the day with my NaNoWriMo pre-writing routine of breakfast and hot chocolate. I made myself some coffee. I took it and a big glass of ice water (writing is thirsty work) to my computer and promptly procrastinated.

But if my energy levels are up to the task, my schedule is a powerful force on me. When I see something written down, it’s like a magnet drawing me in to obey. And so I finally did by deciding to begin gently. I began with making the changes and additions I’d jotted down in my Script Frenzy Moleskine notebook as I was writing last month. It wasn’t so bad, and I got through two pages of notes. I also blogged on Google+ afterwards, like during NaNoWriMo, and copied my thoughts here.

The ice is now broken. Revising should become easier and easier in the coming weeks.

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.

Phew.

Winning National Novel Writing Month (NaNoWriMo) means I wrote 50,000 words of a novel in one month, the month of November. What it doesn’t mean is I’m finished. I wish! Nope, not finished. Sigh.

I took a break Monday from writing once I had completed my novel (which is officially 65,637 words), but today I bit the bullet and did what I ought to have done while I was writing: revise my outline to reflect the changes I’d made as I wrote. Next I need to write the logline — a 25-word summary — so as to focus my mind on the central theme or story of my novel Time and Space. I will also spend the next few days mulling over in my conscious mind — and giving my subconscious space to do its thing — how I have my time machine work and if I want to change it. Once I begin revising my novel, I’ll have had to decide one way or the other whether to stick with my current physics’ explanations or to change to something more out there. I’m getting better at keeping all these theoretical physics concepts in my head, but it seems like every time I turn around, I’m reading or seeing some new theory that pertains to my time machine — and to the future societies in which my novel is set. (My novel only begins and ends in 2011.)

Despite the challenges and me feeling like I don’t know enough (but then I’ve always felt that way my entire life), I’m still enjoying this novel. That’s a radical thing for me to say. My brain injury took away my ability to feel and the resultant circumstances turned writing Lifeliner from an accomplishment to a “thank god that’s over” moment. Plus my first two novels came from a different place than this one. It’s different, and I like it.

November 22

NaNoWriMo claims that at the rate I’m pounding out the words, I’ll finish — that is, get to 50k words — today. Uh, no. Methinks their computer will be changing that prediction tomorrow. Make no mistake though, I had a decent writing session this morning. I’m not sure I finished the chapter where it needs to be finished, but it is for now. Perhaps in revisions I’ll see something more that needs to be added at the end. But 1688 words that came out in spits and starts and flows and stops, is satisfying.

November 23

Back to my outline today, though looks like I’ll deviate again tomorrow. I’ve made such big changes in the last few chapters, I really should update it so that when I go to revise my manuscript, I won’t get lost.

I began this morning’s NaNoWriMo session by jotting down the steps to make the time machine as a guide for today’s chapter. But in the end, I didn’t need it, for I didn’t start building the machine in today’s action. I will tomorrow. It’ll save me some time tomorrow anyway for having done that today. I haven’t done much of that — writing down “facts” I’ll need to follow while writing. I thought I would have to. But I’ve been winging it, letting my fingers show me the way. I’ll “fact” check during the revisions, but I think it’s ended up being a more enjoyable experience having done it this backwards way around. It’s not like I haven’t thought about it at great length for months, and what I’ve relearnt and thought about has certainly come out in my writing. It’s the tenuous parts and the consistency parts I’ve left up to my imagination. It’s surprising the things I’ve invented. I think they’re viable in some distant future … maybe!

2019 words today. I’m oh so close to 50k. Tomorrow for sure, I’ll finish NaNoWriMo, albeit not my novel.

(On a totally unrelated note, why oh why does Google add extra paragraph breaks [or random letters to the end of my posts] requiring me to edit my post to take them out? Once I edit, at least Google doesn’t repeat the error. But it is annoying.)

November 24

Woot! My total word count as of today is an eye-pleasing 51515. I like patterns in numbers especially since I have now passed the 50k mark to win NaNoWriMo, which today it predicted would be — today! Well, actually I don’t technically win until I submit my masterpiece (self-deprecating tone in there folks) to NaNoWriMo for them to count up each and every word. But one milestone passed. Now to finish the novel!

November 25

Today’s outline didn’t make any logical sense as to how my main character would end up in the hospital, in an isolation room. So I changed it just enough to fit in with the rest of the book and still have her end up locked up and then rescued. A lot of back and forth as I filled in previous details as I went along. And then I picked up steam in the last few paragraphs. 2393 words today as I pull away from the 50k NaNoWriMo goal.

November 26

NaNoWriMo sent a pep talk for week 4 from Brandon Sanderson a few days ago. I put off reading it because I wanted to have it for when I really needed a push. Today was that day. Although I’m enjoying the writing, having fun with my story, I want a break. I want to lie on the couch and be indolent. I want to rest and recharge properly instead of lurching from writing session to writing session. But as I have learnt, once you stop the momentum, it’s almost impossible to begin again and far more difficult than to keep going, no matter how exhausted one is. Look how long it took me to get back into revising my second novel when I stopped? Forever.

Sanderson’s pep talk was just the ticket. ToNaNo (the Toronto Chapter of National Novel Writing Month) has been posting daily pep talks. Members have signed up for each day of November. I’ve read many of those, some brilliant, some so-so, although I have to admit the really long ones I skipped because my mind would wander and get drained. But it’s the official ones that have the real kick; they’re the ones that get me going when I can’t move from the kitchen table after breakfast.

Sanderson talked about the lessons of NaNoWriMo: Learning to finish (kick #1 — just because I finished 2009 and 2010, doesn’t mean 2011 is a given for me, especially if I don’t get to the computer and write, I thought when I read this). Consistency vs. Burst writing (hmmm… I think I’m a burst writer). Thinking like a Storyteller. This part really resonated with me:

“One of the lessons I learned as a storyteller was how to refill the creative well while doing other activities. You can do it while driving, exercising, eating . . . anything that doesn’t take your full attention. During these times, many writers I know run through plots in their heads, feel out character personalities, think about conflicts. They make connections, overcoming blocks.“

I had been dreaming of my book last night; I was adding details over breakfast this morning. Was I really going to let down my imagination and not make anything of what it was creating?

And his last lesson: Overcoming Writer’s Block. This is not usually a problem for me. But his advice to just keep writing in order to keep that momentum going, to keep in the groove so that the good writing could return, hit home. Not all my writing has to be non-stop typing. It’s okay if my words come in spits and spurts or with great wrenching to get them out — so long as I stay at the computer until I’m done. (Pacing is the mantra for those with brain injuries; one must pace, we are taught. Write ten minutes, pause for three. Talk about breaking the momentum. Pacing is antithetical to writing, for me anyway. I pace, my writing flow stops. It’s better to finish the scene or chapter until I “feel” finished; I can recover after that.)

So one more chapter done. 1561 words for today. My chapters are short.

November 27

I decided to make today a marathon writing session because the last few chapters are connected. (Plus I want it to be over! I’m impatient to see how it will turn out!) Even so, I still lost track of character changes and physics details and weather stuff. Sheesh. Better go back and fix the weather while I remember and am still in a writing mood. I ache, my neck is stiff, my eyes are heavy, despite the breaks I took, the chocolate I ate, the coffee I drank, and my usual cranioelectrical stimulation regimen. But I’m ready to revise. Go figure.

Before I begin real revisions though, I need a few days to think about my time machine. Do I want it to work the way I have it working? Or does it need changing? Changing will be a pain because there are so many outflows from it. But if another method works better, I should just bite the bullet and make all the changes. First though, a few days to think on it.

8105 words today (make that 8396 after fixing weather details). It has to be some sort of record for me. I am so thankful I finished both NaNoWriMo and my novel and am a bit in disbelief at it too. When it sinks in, I’ll celebrate! With revision time!!

November 15

Writing is therapy, they say, meaning writing about what troubles you is therapy. For me, the very act of writing is therapy. It’s a also great distraction from everyday troubles because all of my cognitive and creative processes are working overtime during the act of writing. Even my subconscious is engaged. Today’s NaNoWriMo was partly having to work out and describe the cultural norms in my future version of Toronto and partly writing therapy to escape the knowledge of my birthday tomorrow; the session went on for a very long time. My muscles and fingers are feeling it. But my word count is happy, if such an inanimate concept can be said to be happy. 3515 words. I’m ahead of my main competitors.

November 16

It’s my birthday. Of course I began it the best and only way I can: writing! NaNoWriMo and my time travel novel wait for no birthday to be over and regular routine to reassert itself. Today’s chapter was a continuation of a shopping and learning-about-the-future society journey my character started on two chapters ago. I think I’ve now filled in all the details about how this society thinks and acts. I’m sure during revisions, I’ll notice many gaps that will have to be filled in and details to be fleshed out. But I’m happy with this morning’s writing. It feels complete with nothing forgotten. 2771 words. I’m really pulling ahead of my goal word count now!

November 17

Two days of heavy writing have knocked me out. Thankfully, today’s scene was short. It seemed fairly straightforward too, and then I began writing my first paragraph. It went off in a different direction. Whoa. I had to reign my runaway fingers in and focus, focus, focus on the topic at hand, or the scene I’d originally envisioned anyway. I can’t move the plot forward if I’m obsessed with dogs.

November 18

I did the necessary today, the bare bones of a transition kind of chapter for my NaNoWriMo novel “Time and Space”. Or maybe I should say it’s a pivotal one, one that doesn’t need to be long but changes the course of my main character’s journey … for the moment. 1278 words.

November 19

I’ve reached and passed the 40k mark for NaNoWriMo! Yay! That’s all I got to say today. Today’s chapter wiped. me. out.

November 20

It makes a big difference when I have my normal (albeit low) levels of energy, instead of being so fagged I don’t want to move never mind think, like I have been for too many days. Having even some energy makes writing not a chore but exciting.

I looked at what was on tap today and made a face. Boring. And not right. Doesn’t fit. Doesn’t work. So I looked at little ahead in my outline, a little behind. Thought about it, remembered where I had left off yesterday, opened a blank page in WordPerfect and went off in a slightly but significantly different direction. I came to a pause, rather liked that line as the last one in the chapter, but was not happy with the word count: about 1400 words, over 200 words short of the NaNoWriMo suggested daily count. So I scanned back up my chapter, saw that one of my characters, Hope, really should say more. Wondered what? And then told myself, let her rip, let her loose, just let my fingers obey my instincts. So I did. I feel good. 2151 words (which according to NaNoWriMo is my daily average word count!).

Don’t forget that for this month only, in honour of my third NaNoWriMo, my first highly rated NaNo novel “She” ebook is on sale for 99¢ only!

At Amazon US

and Amazon UK

and Smashwords with coupon code PZ44G.

And now I’m getting offline to go snack and read. Happy Sunday!

November 21

My writing session was rudely interrupted by appointments this morning. Still, I had typed fast enough that I stopped at a natural break. I’ve completely left my outline now (though I think I’ll be returning to it tomorrow) — which is like walking on a tightrope over Niagara Falls without a safety harness — exhilirating and scary — and so the question for me was: was that break the end of the chapter or should I write one more scene? By the end of the day, I’d decided: time to write one more scene. NOW the chapter is complete. Two short writing stints equals one fat word count. And I think I really, finally have explained everything about this society and its tech … maybe. I’m only two-thirds of the way through the book though, lots of time left to explain more if needed. A little mystery is good! (I know, I know. Confusion is not.)

3179 words total for today. I should have cake after this. But I’ll content myself with a hot chocolate.

November 8

More difficult going today for NaNoWriMo. I had to go back and forth between the Index Card app on my iPad, to remind me what today’s chapter was about, and Penultimate app, to look and look again at the sketches of the new setting and new characters. As a result, I didn’t stray too far from what I’d planned. Sometimes whole new angles crop up as I write. Not today. Though I did make a decision on the dog character, something I’d been waffling over. Not anymore!

Still, I was not happy to be interrupted early in the writing process by a call from my case manager, saying she couldn’t come today. And of course she was only available on days that didn’t work for me when we tried to reschedule. Crap. I was sputtering along till she called. Maybe being annoyed by once again having my schedule dictated by others helped. After that, I sped up, and soon I was typing along. My fingers hurt. But that’s OK by me! I got 2028 words written this morn.

November 9

I took Classical Civilizations in Grade 9. My teacher: Mr Payne, a florid man with well-worn skin who kept a 40-ouncer in his office desk drawer and gave incredibly fascinating lessons on ancient Greek and Roman societies, philosophers, and literature. I have never forgotten his lesson on Plato’s realism or forms, particularly the day he shook a desk and told us in a loud voice that this was a copy.

I thought of him when I was devising my transporter for my NaNoWriMo novel “Time and Space” (http://nanowrimo.org/en/participants/shireenj/novels/time-and-space) but not for long. Today though, Payne and Plato came back into my head as I wondered what one of my character’s ought to read aloud. Suddenly, I knew. I didn’t have the requisite books in my own library — we used school textbooks or translations back in grade 9 — but Project Gutenberg (http://www.gutenberg.org/wiki/Main_Page) and Calibre (http://calibre-ebook.com) ebook reading software came to the rescue.

2092 words for today’s NaNoWriMo writing marathon. Snack time!

November 10

I watched The Illusion of Time on PBS’s NOVA last night. I was hoping to learn something new about time and time travel. I did learn one thing, but most of it cemented what I had already learnt. Seeing the same information presented in a different way means the knowledge sticks a little better in the memory banks anyway. A good thing.

So having learnt everything I can about time and time travel, it was time to write my how-to-build-a-time-machine chapter. A lot more stuff came into the chapter as I wrote. I think I was procrastinating getting to the time of the matter. But I finally got there. Wrote it out. Looked at it. Checked my notes. Fleshed it out. And I think enough of the bones and details are there for me to know what I was thinking when it comes time to revise the novel.

I was going to add some details to previous chapters that had flitted in and out of my head yesterday and today. But I’ve run out of time, energy time that is, and my head needs chocolate! Perhaps tonight I will be able to focus and think. 2519 words today.

November 12

It’s a procrastinating, vascillating, restless kind of writing day. I read the paper and Zite on my iPad, drank hot chocolate, made coffee, anything to avoid writing. I read the NaNoWriMo pep talk of the week and finally felt initiated enough to sit down at the computer. The chapter doesn’t go exactly as planned. Right off the top, my writing starts to go off on a bit of a tangent from my outline. Eventually I finish, but it doesn’t feel right. I’m restless, I head for the fridge, I’m not hungry, I head back to the computer. I work again on some of the dialogue. Details appear I hadn’t expected. Cool. I’m still not entirely happy as in I-feel-something’s-missing unhappy. But the brain isn’t producing, so time for lunch. Maybe this aft, I’ll find it, whatever “it” is.

2279 words today. I’m 700 short of the halfway point. I can’t believe that! But I can’t believe how far we’re into November either!

November 13

One should not write about French Toast on a weekend morning at brunch time. And one definitely shouldn’t write an entire scene during which the characters are eating said French Toast with puddles of maple syrup and heaps of berries. I am starving! Although after interspersing dialogue with descriptions of the diminishing French Toast on their plates, it’s not so bad as at the beginning. I guess OD’ing on an image does have its rewards.

2129 words for today’s NaNoWriMo session. Best of all, I’m well past the halfway mark now. NaNoWriMo says I’ll be done by November 23rd. I wish. Hopefully, if I keep my word count up — not always a sure thing during the saggy middle — I’ll get to the 50k mark then, but I wont’ be done my novel. Onwards!

November 14

So I had to do some thinking this morning. I had done a lot in the last few months, but not enough apparently! It’s amazing how much knowledge we store in our heads about our environment, how things work, things like infrastructure and language and names and classes and races and genders. My Toronto of the future is not like today’s, and where things are the same, there’s a reason for that. But I got tired of thinking and just decided to write and see what comes out. Of course, this means lots of inconsistency can pop up, which means needing an eagle eye during revisions or revising for one aspect of life in the future at a time. I’ll probably do the latter. It’s how I did it for my previous two novels, given I can’t hold a lot of different details in my head at the same time.

Fewer words today although more pages. That’s dialogue and short paragraphs for you. 1995.

1 November 2011

So NaNoWriMo began today. Usually, I’m so pent up in excitement and nerves, I can’t sleep the night before. But as +Errol Elumir put it in a tweet, I felt burnt out before it had even begun.

I’d been thinking about this novel since at least May, had been doing background reading since the summer, had been outlining and sketching it out for the last couple of months, had planned on writing up cheat sheets before November 1st, but life got in the way. And I so totally don’t feel ready; I feel in great need of a month-long nap first!

Time though stops for no one. It just keeps churning through each day until suddenly November 1st is here, and it’s time! That by the way, is a major theme in my new NaNoWriMo Novel: time. And space. Hence the name: Time and Space. Hahaha. Ahem. Anyway got the first chapter done. It helped that I’d written a few lines back in May and had saved them in my iPod Touch’s Notepad app and now that I have the newest version of the device and iOS, I was able to print it out to put before my eyes and inspire me. Now to go find a snack.

2 November 2011

Day 2 of NaNoWriMo went way better than Day 1. I had a couple of thoughts in semi-sleep last night about chapter one, remembered one of those thoughts, and made the changes. I reminded myself of how I ended chapter one, and then opened a blank document to start typing chapter two.

It was slow going at first, but this chapter is mostly about description and dialogue, not much plot movement, seeing as they’re in a ship and all. Once I got into those, especially the dialogue, I had fun, and the words flowed. It’s strange how voices come to me, how I know how to write dialogue for the different characters. I hadn’t thought much about how English would be for these characters, and in the end, the language was short, staccato, no casual words. It seems to fit. Of course, it isn’t at all what English will be like in a thousand years, and maybe I’ll have to add some sort of sentence that they’ve learned to speak her language so that she can understand to explain away why they speak our English. But at this point, I have the main bones down. 1960 words, a decent count.

3  November 2011

The biggest problem with writing, I find, is fear: fear of, can I write? Fear of, will anything come or will I just sit there staring gaga at the screen? Fear of, have I prepared enough, am I ready? But the biggest fear for me is will my energy last until I’ve finished my chapter? I suppose I could break up writing a chapter into two or more parts, but I found early on, back when I was writing “Lifeliner,” that if I did that, if I took breaks or did the pacing thing I was taught, the writing came to a stop. I lost the flow of my thoughts, I forgot where I was going and where I’d been. It was crap.

So I write a chapter in one go, hoping I can type fast enough to do it in an hour, and fuel myself with coffee and chocolate beforehand and ice water during. That Script Frenzy mug I received after my first Script Frenzy is the right size for my water-guzzling needs!

I had a lot of the caffeine-and-sweet stuff swirling around in my system this evening, and so I wrote another chapter. My imagination was on fire, and my energy was pretty darn good for the first time this NaNoWriMo. Four chapters done. 1919 words written tonight. Woot!

5 November 2011

The sun is such an energy giver. It’s blinding outside today, the sun is so strong. But it plus chocolate plus coffee plus ice water (I know, not the usual kind of writer fuel), have powered my words on today.

It was a slow start to the morning, and it didn’t help that I read an article in the “Toronto Star” about brain injury, specifically mild traumatic brain injury (which is what I have) that veterans of Afghanistan and Iraq are suffering from in droves due to concussive devices — IEDs. I was in a thoroughly bad mood by the end of it, even though it talked a lot about some of the new research into detecting this invisible injury, because it had brought back bad memories and reminded me of how abysmal brain injury detection and treatment is in Canada and how shockingly bad our veterans are treated. “Lagging behind,” is how the writer put it. I think that’s an understatement. But my Twitter followers bucked me up, reading @NaNoWordSprints inspired me, and off I went to my computer. 1866 words for chapter 5, almost all dialogue. Tis more fun to write, and my fingers had a hard time keeping up with my subconscious spilling out the words today. A good thing!

6 November 2011

One should not stay up late watching Masterpiece Mystery on PBS when doing NaNoWriMo, not even the night/wee hours before the clocks fall back. On the other hand, somehow sleep deprivation got me to break the 2000-word mark for the first time this NaNoWriMo! Woot! 2112 words today. I like the pattern of that number.Now I can turn off my computer and return to my regular Sunday schedule of being off computer, off the Internet (except to read the news, natch).

7 November 2011

An important chapter today for NaNoWriMo, and it strained my brain. No matter how many notes you write, how many sketches you draw and images you collect, trying to describe the future, even one completely of my imagination, is hard. Setting is important. Describing a setting that not one person on this planet will be familiar with because it’s all in my head, is even more important so that readers can follow the plot along and understand the characters and milieu of the time I’m putting my novel “Time and Space” in.But I’m done. The main bones of it anyway, and I’ve gotten my main character into the building that will become the central hub for the rest of the story. The one nice thing about writing so much description — including my main character’s reaction to this strange place — is the word count is higher than for dialogue. 2217 today!

Eight-hour later update: Oops. I forgot a detail, not a hugely important one but one that gives extra mystery and flavour to this time my main character is dumped into. Now added. Word count 2392.

I received physiotherapy, massage therapy, and acupuncture for those injuries. But, you know, automobile accident benefits last only so long. I fought for every dollar: they trying to deny, deny, deny; me standing firm in saying I’m injured and you’re paying and you can’t make me not go (you’re supposed to get their permission before commencing physio, f*** that). But it doesn’t matter how stubborn you are, it’s rare to receive payment for as much physio, or any kind of therapy, as you need. Eventually, the lawyers will guess how much all your medical expenses will cost, they’ll usually guess too low, and you’ll lose, I mean, you’ll get a settlement on the claim.

That money bought me my gizmos for my brain injury, two (insufficient) years of brain biofeedback, a robotic massage chair since muscle pain screams up when the massage therapist is not around and besides a massage a day is a wonderful thing, and sessions of physio and massage therapy. But after two car crashes, one of which involved three impacts, my need for physio exceeded the cash the insurance company so generously gave me for all medical expenses. My physiotherapist semi-retiring didn’t help.

For years, I yearned for neck traction. I hear that sounds painful to those not in the know. So let me explain. When the shit drivers stretched and sprained my neck through their car weapons, they caused the muscles to spasm and pull my neck vertebrae out of alignment. On the X-ray, my neck was dead straight. Then I developed a bump in the alignment at the base of my neck. Fairly common from what my physiotherapist said. It’s like what happens with old ladies who start to have a better view of the floor than the road ahead. My neck turtled into itself; the muscles became “stuck,” and it became hard to stand straight, beyond postural problems. Exercise to strengthen the muscles and massage therapy can only do so much. The best antidote is, while you’re lying down, for the therapist to hold the neck gently but firmly with fingers placed carefully on the sides or back of the neck and then to gently but firmly pull. As the patient, I can feel the stuckness being released (a bit) and the relief. The therapist can feel how my muscles are reacting and can ease up or increase the pull accordingly. Some physio clinics use machines. Spare me. I’ve heard people have worse pain after physio on the neck, especially when machines are used. I never have. Traction ought to bring sweet relief and, over time, a more natural alignment and an added centimetre in height.

I want that centimetre back, darn it!

Over the years I asked people from CCAC (Community Care Access Centres, through which Ontario government pays for home medical care) and my GP for medicare-covered physio (which is very limited as the Ontario government thinks untreated chronic injuries are less costly on the coffers than paying for physio, not!) or for very inexpensive physio. The former clinics are packed to the rafters and use machines. No thanks. The latter are nonexistent, apparently.

So the other day I go in to my GP with a painful foot, probably plantar fasciitis. He refers me to a podiatrist at some clinic on Richmond. Never heard of it. I call and ask if the podiatrist is covered by OHIP (medicare). Yes, but I could also see the physiotherapist or certified athletic therapist, to receive care for my neck and back too, and here are the prices for those sans insurance. What the –? My GP referred me to a place where I could get neck traction for such a low cost (by certified athletic therapist) that even I can afford it? Why now?!! Why not years ago when I first asked?!!! Why do I have to get something wrong in a different place to get help for what is truly bothering me, like my skin last winter for my brain and today my foot for my neck and back?

I wasn’t sure if therapy from the athletic therapist would be as good as my neck specialist physiotherapist, but yesterday after the assessment I received my longed-for neck traction plus leg traction plus laser on right shoulder. Not as good as my former therapist but — relief! And boy am I “stuck.” That should change with repeated tractions, and that laser is very nice. Next time I must remember to ask for it on both shoulders. My left is not happy compared to right.

If I was a professional or amateur athlete, I would’ve received proper physio for as long as needed and would’ve been fine years ago. What kind of stupid society do we live in that they think only athletes need to have muscle injuries properly addressed? I can understand why insurance companies don’t wanna pay, but for government to be complicit is just dumb. Don’t they know untended injuries lead to chronic pain and reduced abilities, which lead to unemployment, higher government-covered medical expenses since lack of physio leads to needing way more expensive things like surgery or home care, and worst of all, fewer taxes in the coffers?

Apparently not.

Moral: keep at your insurance company and your lawyer to max out insurance coverage, then keep at GP and all health care workers till they finally cough up where to get low-cost physio. Then get that traction and laser and ultrasound, whatever works, to get those muscles happy, strong, and working again.

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.

To make matters worse, our Parliament and Legislatures are becoming more and more about The Leader and the MPs or MPPs are simply seals that bark to command. And so voting for candidates because of who they are and their background is becoming meaningless. You’re simply voting for a human to keep a seat warm in their party’s section of Parliament or the Legislature. It’s disheartening.

But then I’m reminded that people died to keep Canada a democracy, to keep it free from fascism and totalitarianism. I’m reminded that we have a Charter of Rights and Freedoms, with teeth, that came about because we’re a democracy. And a key way to keep Canada a democracy is to vote. I’m reminded that it’s the people’s voice that keeps the police and politicians from blanketing our highways and cities in CCTVs, which allow tracking of our every move and strip us of anonymity, a hallmark of democracy. Autocracies need to, and like to, track its citizens wherever they are. I’m reminded that it’s our voice expressed through votes that decide how much of our privacy will be stripped from us, whether we approve the arbitrary use of police force okayed by Premier Dalton McGuinty and the Liberal government during the 2010 G20 in Toronto.

But what to do when the First Past the Post system disenfranchises you, when you don’t like the three big parties, when you don’t like the candidates in your riding?

Remember first that if you don’t want your democracy usurped by something else — by an autocracy, by one man deciding your fate — then use your vote.

If you don’t like the three main parties, check out the Greens. They may surprise you as reflecting you and your political wishes. And perhaps see a vote for a smaller party as sticking it to the big guys.

And most importantly remember you can reject your ballot. It’s a protest at the ballot box.

If everyone who sat home on voting day went to their polling station instead to reject their ballot and have that rejection registered, then the politicians — and the media — would have to take notice. And maybe then our leaders would seriously bend their minds and actions to improving our democracy.

So go and reject your ballot! I am.

Savoury

King’s Café, in Kensington, was the Fair’s Gold Sponsor and had a take-out counter. I had my first Chinese bun in years, a veggie one this time. No more barbecued pork buns for me after I went veggie. It was one item I missed. The King’s Café bun was good. Puffy, white, slightly sweet. The veggie filling was not filled with fresh or quickly sautéed vegetables so much as saucy filling of some sort. I would’ve liked more colour and flavour. Their spring roll was like vegetable spring rolls everywhere: crispy and greasy. The other item I had, a mock chicken skewer was bleh.

Bunner’s is on Dundas West and had a delicious-looking booth of cookies and cupcakes with a couple of savoury items: pizza or curry pastry pockets. I bought the pizza one, a red-velvet cupcake, and their Gypsy cookie.

The pastry for the pizza pocket was decent, a bit crumbly though. The filling included tomato, mushrooms, and diet mozzarella cheese. Let’s just say I’m not a fan of the latter. I do eat skim cheese or partly skim, but this did not taste anything like as good as what I buy at the store. So I think since the bakery is vegan it was not so much diet cheese as fake cheese. Soy and tofu are good substitutes for some things and can make tasty dishes, but I’m not a fan of many versions of soya milk (gag) and apparently not the cheese either. The mushrooms tasted like those ones from the old days in red-candled, dim pizza parlours. Not good. The tomato sauce was not all that flavourful. And something gave a chemically aftertaste; maybe that was the “cheese.” I don’t know what the calorie count would be, but it looked as hearty as a Cornish pasty. Too bad nowhere near as filling. I definitely needed dessert (well, is there any excuse not good enough for dessert?).

The Sweet Stuff

I stocked up on the sweet stuff from several bakeries and took them home, except for the sweet potato doughnuts from LPK’s Culinary Groove. I am a fan of this expensive-but-worth-it bakery and had not yet tried their doughnuts. And so when I saw they were freshly frying them, I had to try a cone of three. They’re tiny round balls dipped in maple sugar and piled into a paper cone. It’s a very attractive snack. The doughnut itself was crispy on the outside, soft and delicious on the inside, but the maple sugar’s flavour overwhelmed the dough’s. I would have much preferred raw organic sugar, which, I must admit, is what I like dipping my own homemade doughnuts in. A rare miss in LPK’s pantheon of delights.

Bunner’s red velvet cupcake is a dainty confection pleasing to the eye. But in my first bite, I received a strong taste of the fat, non-butter fat. Good butter is yummy. Coconut fat can be awfully good. But oils and other baking-type fats are best left as background tastes not dominant ones. The texture was suitably airy, and the icing awfully sweet, which I know in our sugar-saturated society, many like. Not me. I do have a sweet tooth, and some sweets like Indian sweets are meant to be oh-so-sweet, which is why they come in small sizes and pack strong flavours to balance the sugar. But too much sugar in non-Indian sweets is not a good thing. Cakes and cupcakes are meant to be a flavour harmony that lights up the taste buds and makes the mouth smile and the mind remember pleasurably for a long, long while. Too much fat and sugar just gives one an emotional overload that leads to an emotional trough.

I saved Bunner’s Supersonic Gypsy cookie for last. And I’m so glad I did. My stomach was satisfied, my taste buds were singing, and my eyes feasted on the deliciousness of deep red dried cranberries, a surfeit of chocolate chips, creamy-coloured oats, and seeds, all held together with yummy cookie dough. I should’ve bought another. And another.

Next on the sugar express is the pecan sticky bun from bloomer’s bakery. According to the veg.ca website listing, bloomer’s is a delivery-only bakery out of the annex or available only at select stores. And so this was a good way to try out their goodness. The gentleman who served me was the baker’s father and generous. I bought the bun as I was leaving the Fair. Back at home, I had a third of a bun first (I was getting a bit stuffed). My first bite netted me a hit of sweet, uncooked dough. A short stint in the microwave fixed that, a remedy I’ve had to use a few times with my own doughy recipes because I seem to have lost my sense of when bread is done (stupid brain injury). So either the baker is new at this or rushed because of the pressures of the Fair. Experience with bread baking and high-pressure situations will remedy this in time. The taste was yummy. And it wasn’t drowning in cinnamon like some sticky or cinnamon breads can be. Sticky with just-the-right-amount-of-sweet bread and crunch of pecan, it hit the spot.

Next up was the Kelly’s Goodies’ coconut cupcake. It didn’t survive the trip home too well.

But when I took it out of its carton, I found that it was only the beautifully rounded dome of icing that had been smooshed and only on one side.

The cupcake was fine and oh so moist. I detected banana; it seemed like it was layered in between the icing and chocolate cakey part, but I didn’t take the cupcake apart to inspect it. I was too busy eating to want to pause. The cupcake was decently chocolatey and not too sweet. Even better, the icing wasn’t overly sweet either. I think the coconut sprinkled on top thickly would’ve been better toasted, not only for a nicer crunch but also for the flavour. I noticed near the end of my cupcake feeding frenzy that fake aftertaste I’d noticed so strongly in Bunner’s baked goods. In this cupcake it lingered a few moments after I’d finished, long enough not to be pleasant but not so long that I went hunting for something else to eat to get rid of it.

Kelly’s Goodies’ is in Burlington, and its brownies come in at least three versions. At the Fair, they were handing out little samples of the plain-no-icing brownie. Smart. It got me to buy the Über or World Peace brownie — a brownie with a thin layer of chocolate icing. For icing nuts, there was the Mile High brownie with a rising cloud of icing and what looked like a tiny brownie on top. The Über Brownie is chocolatey and moist, so moist it almost clings to your palate like peanut butter. The icing was chocolatey too; its sweetness didn’t cloy, and the sugar didn’t overwhelm the chocolate taste. Best of all, no fake or chemically aftertaste.

Apiecalypse Now! bakery doesn’t have a storefront so the Fair was a great opportunity to sample their fare. I chose an individual fruit cobbler filled with strawberries and peaches and totally covered with pastry so that it would arrive home sans fruit spilling out. I can only eat so many desserts in one day, and so it sat in my fridge for a few days. I heated it up in its foil container, uncovered, in a 200°F oven. Warm is best for pies. And it was good. Its taste and texture were as if I had just bought it. A fluffy topping, full of flavour but not overpowering, its crust a golden bite. The filling was a fruity, not sugary, amalgam of strawberries and peaches. I have to admit I would’ve liked more fruit. But it was a very pleasing pudding, as they say in Britain.

After all this dessert goodness, you’d think I’d have had my fill for a month. Nope. I’m ready for trying another pie from Apiecalypse or maybe one of LPK’s genius vegan Nanaimo Bars that I savoured a couple of months ago from their bakery on Queen Street East. It was worth the special trip.

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.

“I had finished breakfast, I was near the kitchen table, facing out I think, listening to 92.5 FM, Kiss 92, when Billy [sic], the female half of the morning crew, announced that a plane had just crashed into the World Trade Center. I thought what are they joking about now, but when they continued to report what they were watching on CNN, I went…to the TV to see if this was real. CTV…I knew would have coverage thru’ Canada AM. I saw one tower burning. We went from chopper angle to angle, & in one we saw a plane zip between the 2 towers & the second one explode. My incomprehension turned to shock…. I left the TV…a couple of times…[and] every time I came back something horrific had happened. It was like my car crash, when I thought it was over, it wasn’t. I saw the 2nd tower implode live – it looked like one of those buildings companies take down by explosion. All those people, those poor people…. I am too horrified to sleep.” (From my journal entry for Tuesday, September 11, 2001)

What I didn’t record was that my first thought in seeing that plane explode into the second tower was: this is war. I guess that day we felt what former generations had felt. One moment, lives are a routine of sleep, eat, work, dance, drink, sleep; the next, women are working as equals to men, and men are dying in the tens of thousands in a foreign land (for us today in the almost hundreds).

It was that sudden switch from normalcy to incomprehensible carnage, that horror collapsing into horror, that knowledge that war had been brought to us, all piling up until your body quivers in anticipation of the next blow – it was that that gave this shocking event its lasting trauma. I fished out my journal because Postmedia asked me to write a piece on 9/11. Rereading it reminded me of that day in a way that simply reliving the memories did not, memories of watching Kevin Newman fly into his anchor chair, a little dishevelled at this entrance-by-fire to his new job as Global National anchor; memories of not knowing what to do when the day was over; memories of a worried night. And while this abomination unfolded, the President of the United States, the leader of the Americans being blown up, disappeared into the air. A country needs its leader to be front and centre, not coddled in a secure airplane. But perhaps that’s the American way. It’s not the Canadian way…I hope.

As time has gone by with no new killings on the 9/11 scale and as the war has dragged on, testing the short-thinking ways of North Americans, the trauma of that day has faded. It’s easy to forget who began the war and why it’s important to be in Afghanistan. It’s easy to once again believe that the ocean will protect us from the madmen and to retreat back into our warm, safe homes in an illusion of snugness, eschewing vigilance.

(Published on canada.com)

I’m a half-breed. I’m half of a people so decimated, there are purportedly only a couple of hundred thousand left on the entire planet and whose official structure didn’t recognize me as being Parsi (they do now) because of a deal they made centuries ago in order to survive. Half of hardly anything is rare indeed. It would’ve been an astonishing day to see a person like me teaching me or mentioned in any of my studies as people to admire. I was so rare that it wasn’t until the 21st century – until after an influx of people who worked and played alongside people like half of me on the other side of the planet — that anyone knew what I was talking about when I mentioned I was Zoroastrian or Parsi. My heritage is actually writ on my face – except for my nose. And thank God for that. Parsi noses are prominent. Anyway, because of that, some Russians, Indians, and Iranians look at me and know me.

It is strange.

And I’m conflicted.

I grew up in a school system who knew no one like me. It was so bad that when I was taught classical civilizations in high school, I rooted for the ancient Greeks in their war against the ancient Persians because that’s who my teacher – the irascible Mr. Payne – rooted for. And, as well, there were lots of Greeks left to care for and advocate for their history; Parsis don’t even live in their own land anymore, never mind have control over their structures, history, and names. (Many think my name is Muslim. It isn’t, it’s a Parsi name. The co-opting of Parsi names as Muslim ones would be like Cree names being co-opted by the English and identified as English names.) And despite being an argumentative, debating lot, Parsis as a people have no voice. It was a long time before I learnt that the ancient Persians were my ancestors. And so I can’t get excited about people blaming the lack of seeing themselves in their teachers and coursework for their lousy performance. In the end, it wasn’t seeing myself reflected at school that drove me to do well, it was what I was taught at home, told over and over and over and over and over again that only good marks would do, specifically “A”s.

Yet I find myself increasingly annoyed at the token female syndrome. You know, that’s when a talk show has a panel of which only one member is female so that the show or host can say they represent all perspectives. Yeah, right. When TVO gave the boot to Paula Todd, they also gave the boot to female equality in front of the camera on The Agenda. I’m not talking about going from female-male co-hosts to male host only. I’m talking about panels of five being all male but one. And why is it panels of three can only be two males plus one female? Why never the other way around? In the 21st century, there aren’t such a dearth of expert women that it would be hard to fill a panel with them.

Seeing these token-women panels makes me feel like I don’t matter, that as a female I have a voice so long as the men around me let me have one. As a half-Parsi, half-English Christian, I don’t feel like that at all. My Parsi heritage taught me to use my voice, that it counted as much as anyone else’s. And so as a teen and adult I never let patriarchy or misogynist attitudes shut me up or to feel less than. So what gives now?

Decades of being worn down by the inequity of being female.

And moreso, losing my personal identity because of brain injury.

It’s tough enough to belong to a group no one’s heard of, but to not yourself know who you are, with no solid group identity to hold on to, is a torturous place to be. Yet that’s not as bad as inhabiting the female identity, for women are treated so badly, so routinely that the fact the glass ceiling hasn’t moved in twenty years barely mentioned a blip on the evening news. In all the discussions of how hard it is to be a Muslim in a Christian society (try being a Christian in a Muslim society, ahem), an African- or Caribbean-Canadian in the ghettoes, a First Nations member on a poor reserve with no running water, the pundits and opiners forget that to be female in any society is to be below every culture, every ethnicity, every race, every creed. Is it any wonder then that too many women who achieve success lash out at the other females and keep them off the airwaves and out of the boardrooms? To be female is to have the most contemptible identity of all.

As of now, I’m on my 2 to 3-week staycation (my therapist chuckled at the idea of me resting for a whole 3 weeks) and plan on being offline for about a week in the last week of August. The rest of the time, I’ll be online only on and off to check for any emails I absolutely must answer. The only social media I plan on updating is Goodreads because I have a stack of paperbacks and ebooks I’m going to tuck into. I cannot wait!

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.

For those who don’t know, this practice of following a person and then within a day or perhaps a generous five days unfollowing the person if they don’t follow back arose because of Twitter’s policy. Once you follow 2,000 people, you must have a certain ratio of follow:being followed in order to increase that number above 2,000. So the idea is you follow a person, they immediately follow you. You unfollow the person and repeat with another. (Writers who do this may not unfollow as it’s also, in their view, some sort of support thing.) If they don’t follow you, you definitely unfollow them. That way the number of people who follow you will remain higher than the number you follow, and Twitter will let you increase the number of people you follow beyond 2,000. You follow? However, with apps like TwitDiff, people like me can now spot these kind of Twitterers and no longer have to waste our time checking out their Twitter feed.

I have never immediately followed back because I am too slow. First off, it can take me weeks to check out feeds, it all depends on my energy levels and what else I’m doing. With some feeds, I can’t make up my mind if I want to follow them. With feeds filled with RTs and @ replies, I know I don’t because a feed filled with RTs is too difficult to read, and a feed filled with @ replies means I won’t see it with how Twitter handles those tweets. Only TweetDeck would show me them, and I’m not on TweetDeck that often. In a very, very few cases, feeds are a slam-dunk to follow. They have funny tweets, interesting tweets, intriguing links, banal tweets, good info, some @ replies, a few RTs, or a combo of all of those; they have conversations; they’re not filled with hashtags fore and aft, which make my eyes spin. In short, they’re worth the follow.

Those kinds of feeds ought to be a natural for writers to write, or at least aspire to.

Apparently not.

I joined Twitter for the same reason I started a blog: to practice my writing (those 10,000 hours Malcolm Gladwell writes about plus it’s fun or at least work I like) and to express myself. Twitter had the added discipline of imposing brevity. Short writing, putting a complex thought into few words, is not easy. Twitter provides the perfect opportunity to practise.

Twitter also provides the writer the chance to write pithy thoughts on a wide variety of subjects. You’re not confined to the subject of your books or the theme of your blog.

I have also discovered that Twitter allows an author to meet readers. Goodreads does that too, but not in the real-time, free-flowing conversational way that Twitter does, in which others can join in to your conversations.

And Twitter allows you to meet or follow interesting people in the publishing industry and learn from them. You can’t do that — heck, you can’t do any of the above — if all you’re doing is exchanging book shills, which becomes extremely tedious before the day is half over.

Yes, an author does need to tweet on their books, what others are saying about the books, where to buy, sales and promotions. And yes, there will be bursts of these tweets when a new book comes out. But over the course of a year, those tweets should be a small part; even in the bursts they should not be the only topic on the author’s feed.

Twitter is a merit thing when it comes to following. I don’t expect people to follow me just for following support. I don’t expect people to follow me back just because I followed them. My tweets may not be their cup of tea. So I don’t like it when people impose the expectation of you-have-to-follow-me-just-because-I-followed-you-even-if-my-feed-is-the-biggest-yawnfest-you-ever-encountered. TwittDiff lets me spot these kinds of Twitterers in the ease of my email inbox. I no longer have to spend precious energy or minutes checking out a feed, only to discover that they’ve already unfollowed me (you can tell by the lack of direct message ability). But even with TwitDiff, it really irritates me when writers unfollow because I didn’t follow back right away or at all.

Authors who think we should follow each other because it’s how we support each other and that by boosting Twitter follower numbers we will somehow sell books, are missing out. And they are also missing out in how we can truly support each other: by sharing info, by discussing how we do things, joining up under a shared hashtag like #amwriting or #nanowrimo even though we may not follow each other. These authors and writers have just stuck a finger in the eye of Twitter’s opportunity.

“Real” authors, the established ones, don’t do this follow-you-follow-me thing. They’re too busy writing interesting tweets.

I remember my first days here as a child. I saw empty streets, clean pee-free sidewalks, trees and more trees, and even more trees, and cool grass under the tootsies. Most amazing of all, everyone had a car!

As I grew up, I noticed other differences. Racism infected my schoolmates and Canadian society in general, yet it was not nearly as invasive as in India where there was always some reason to look down upon or despise "others" whoever the "others" were. Weather never stood still. It showed more than the two Indian  moods of hot and rain. Here hot saunas cool down into breezy nights, and trees turn red and gold. Then golden trees give way to soft white flakes falling from the sky, and in turn the greyed white blanket melts under fresh rain and warming days. In concert with the crack of the bat, growth emerges slowly over weeks in the south and up in the Yukon in a single day.

And yet…

Indians revere education. Yet Canadians did not seem to. I often heard that learning takes childhood away from children as if children by necessity do not learn every minute. Without learning, how would our young leave diapers behind, learn to speak, learn to share, learn to work with others? Children love to learn; it’s innate. It’s adults who hate it. Children are smart, for in the current information and knowledge revolution the country that respects education and begins formal learning at the youngest age possible is the one that will prosper.

And yet…

Our ancestors set us up to lead the knowledge revolution. They did not relish living in the stone age; they toiled to build a modern, prosperous, just nation from dark forests, raging waterways, and feuding peoples.

I wonder what drove them? For it seems to me that that gushing desire to create, to build a home for everyone has trickled into a puddle of complacency.

I discovered part of the answer when I travelled north, way north. Canada’s spirit lives in her wilderness. We here in Toronto can glimpse it in our deep, leafy ravines and the wildness of Lake Ontario on a stormy day. But only in the northern territories can one feel it. Seeing the young mountains of the Yukon, experiencing chicken lunch time in a small store in a small place on the one road snaking north, marvelling at a forest burnt down fifty years ago with nary a new leaf to be seen, boggling at the rigorous hike men and a few women endured to get to Dawson City while gazing upon the river churning nearby, imagining that river flowing into all the large and small waters that nourish our land, all that and more makes you feel the deep, dangerous heart of Canada, a heart that beats for her people and expects much.

That heart must’ve been what impelled our ancestors to claim cities out of impenetrable flora, to ambitiously build a railroad from coast to coast, to declare the 20th century ours, to forge a national identity on bloody battlefields, to imagine and build places like Chalk River that used to heal the world, to create a social safety net that alleviated so much worry, to bring the Constitution home, to aver that we are strong and mature enough to handle free trade. Our past leaders spoke into being vast northern dreams, and we followed them, cheering, kicking, screaming but never slowing down. Their courage, their persistence, their imagination built us a paradise.

I wish all my fellow Canadians a happy day in Paradise and for us all to remember how we came to be. On this Canada Day, I wish that we as a people will invite into ourselves that burning northern Spirit again, that we will drive ourselves off the comfortable couch to continue on with the creation our ancestors began.

Canada.com printed a shorter version of this piece of their Real Agenda web page in honour of Canada Day.

To be published by a large, traditional publisher, but not a small press, you need an agent. And besides it would be nice to have someone alongside, who knows the ropes. Writing is a solitary game otherwise. But how to get an agent, especially in this era of vampires and paranormals? I don’t read them or write them, but I am getting tired of reading about them, they’re that ubiquitous.

Also, how long must one wait? For an agent to say yes, for a publisher to say yes, for the book to appear? I suppose if you’re young and have another job, a year or two each is no big deal. But I had to ask myself, after losing a decade, how many more years was I willing to lose in this never-ending waiting game? When I was honest with myself, the answer: none.

And so once again into the self-publishing world I go. After the unhappy end with iUniverse and the little matter of no longer having the money, who to go with? And more importantly, should I publish print books or eBooks only? I decided eBooks only. But as is my way, my decision sat on unstable ground.

Next question: who to hire as an editor? I went with the smaller, less expensive outfit. More in another post on that choice. In contrast to trying to choose an editor, revising my novel once I’d received the edits was a relief. This was known territory. Still I worried: was it good enough? Had all the lost threads and inconsistencies, the grammar oops and verbos been found?

I needed a proofreader. But they are hard to find. Amazon CreateSpace doesn’t even provide that service. Instead they offer a round of basic copy editing. But editing and proofreading are physically done differently. In editing, you read like a normal person, left to right, down the page, seeing both content and grammar. In proofreading, you read backwards, from bottom to top of page, sentence by sentence. I start on the first page, but it wouldn’t surprise me if others start on the last page. Not distracted by content, you’re more likely to catch grammatical errors, misspellings, and typos that way. It’s also faster. As a result, the cost for proofreading should be much less than copy editing. So to pay for the latter when you want the former is a bit heavy on the wallet.

I finally did learn of a real book proofreader. But she was booked into the summer. And so I huffed and sighed and groaned and printed out my manuscript, slapped it down on my desk, pulled out my green pen, and began proofreading. I was astonished that though I hadn’t worked as a proofreader in *mumble* years, I went right into proofreading mode as if I had never stopped. I wish I could learn that well today — it really hit home how learning today never becomes ingrained in me like things did pre-injury.

At the same time as I was trying to find a proofreader, I had to contend with what to do with the cover. Do I hire a cover designer or do it myself? A good book cover designer has a special skillset of knowing what looks good in that format and will sell a print book. Yet covers for eBooks work differently than covers for paperbacks or hard covers, which just a perusal of cover thumbnails on kobo or Amazon will tell you as most are designed for print and copied unthinkingly to the eBook.

Unlike other authors, I actually have some design skills and a decent eye for what looks good. And so it wasn’t a case for me of, of course get a cover designer. Cost became the overriding decision-maker. My work is free to me.

And finally came the back cover copy, or in Smashwords parlance, the extended description. But writing back cover blurb is the work for marketers. Now some in the traditional publishers don’t read the book, which is why the back cover blurbs don’t match the story, but good ones do and know what will catch the eye of a reader. I do not. But free is me. And I had a brilliant idea: all those query letters I wrote and had rewritten, they would make a good base for the description. I had already written a logline. So I used that for the short description.

Still, once I had done the soft launch of my novel She and could see the book page, I was not happy with my initial effort. I found a how-to and tried again.

Then someone asked me when readers like her, who read only print books, would be able to read my novel. Sigh. I revisted my first decision, and I suddenly remembered that NaNoWriMo had offered a CreateSpace proof to winners. Could I use that? Well, no, not for this novel, but it did get me to read the website for winners and realise that if I once again, did it myself, I could get it into print for free. So once again, into the tedious brain-busting physically-draining world of formatting I go. And do I go into the formatting world of Word, for which CreateSpace has a template, or my traditional desktop publishing world of Corel Ventura? Formatting a manuscript for print is different than for an eBook or the Kindle, and Ventura does give you more control. I have yet to do the Kindle on Amazon itself (Smashwords converts to Kindle format but it isn’t available on Amazon); I am both procrastinating and waiting to ensure my soft-launch readers don’t find typos or formatting errors. Formatting for print will take a few days and by the time I’m done, assuming I make up my mind which software to use, I will (I hope!) know of any typos.

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.