Jan 152010
 

I find it difficult to believe that it’s exactly ten years (18:30 15 Jan 2000 to 18:30 15 Jan 2010) since I was injured in a multiple car crash on Highway 7 in Woodbridge, an injury I thought at the time was like the one I sustained in another car crash back on 10 June 1991: a whiplash and shoulder strain from where the seatbelt gripped me and held me against the seat. Except it wasn’t. But I didn’t know that for about three months when my psychologist leaned forward and said, you know, I think you have a closed head injury and then when I told my friend, she said I knew it, I knew you were really sick. Well, I wouldn’t call a brain injury a sickness, but it definitely changes you, your life, your abilities, your friendships. It changes everything; so today, to purge those memories, to tell the story I haven’t properly told or been allowed to tell, I’m going back to those horrid early days when bad things were just temporary and soon the good life would return, or so I thought.

When I was still in outpatient neurorehab, my social worker had me write an e-mail to everyone I knew about what had happened to me. A friend also gave me pointers in what to write. It was a way to make the brain injury real and to educate people at the same time, although even today, it all seems rather surreal.

I wrote (with my comments from today’s perspective in indented italics) back in early 2001:

Hi!

Y2K has been interesting to say the least. It all started when I ventured out into 905- land for a simple errand. I should have known better. A 416er should only enter in an armor-plated car with inertial dampers and force field surrounds. Thump… BANG… Bang! Two high-flying cars shoved our stopped car into the car in front; my brain made like jello, my neck like a whip. The final tally was a neck sprain, two shoulder sprains, impairment of blood supply into right arm (and a bit into left), ulnar nerve problems in the left arm, and a closed head injury. The neck, shoulders, arms are healing nicely, and I’m rapidly regaining my strength. But my brain…

I had so much to learn, like how my first car crash had set me up to be more vulnerable to a closed head injury; how I had three impacts to my brain as first one then another car ran into ours and one of them pushed us into the car in front though it seemed like one crash; how I had diffuse and coup-contra-coup injuries in frontal, temporal, and parietal lobes; how the initial SPECT scan only told the big picture part of the story and it wasn’t until the ADD Centre assessed my brain function properly using 19-point EEG that I got a full and specific picture of which parts affected, explaining many of the problems I was having that those in the medical model either didn’t understand, didn’t accept, or didn’t know what to do with it. Ahhh, 2000-2001 was the year of barely-understood repercussions, of barely-seen discoveries to come.

The closed head injury is why I’m writing to you today. I got the idea for this kind of newsletter via my social worker from one of her clients. He decided to write a newsletter after he got tired of answering the same old question: “How are you doing?” Instead of getting fed up, he decided to educate. I thought this a brilliant idea, and for me  it had the added benefit of putting reality down in black and white and letting everyone know at the same time. It’s hard to deny something when it’s in print. So here goes. BTW, by request, I’m highlighting things I’ve learned that you might find useful too under “TIP”.

Closed Head Injury or Acquired Brain Injury — the Repercussions
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* Slow processing (aggravating, and the worst problem in many ways)

–>  This is a term I never heard before the accident. Basically, it’s the rate at which the brain processes and responds to each stimulus as it happens, stimuli such as people talking (each person equals one stimulus), the phone ringing, artwork on the wall, clutter on a table, music playing. For most people, stimuli are like a bunch of balloons floating a couple of meters in front of them, being slowly released one by one. Each floats lazily towards you; you see it, know what it is, decide what to do, and are ready to bat it when it reaches you.

Now here’s me. My brain has slowed down so much that those balloons are like fastballs, being shot at me by some veangeful ball machine. I see what the first one is,  know what it is, barely decide what to do with it when it beans me; then the next one is shot towards me, I see it, barely know what it is when it beans me; the next one I don’t see.

Ow!

They finally did a test that measures one’s vocabulary versus how long it takes to do the test; it’s a way to measure processing speed the old-fashioned way. (Computer programs psychologists use measure it more precisely.) There was such a difference between expected processing speed based on my vocabulary and my actual processing speed, that there was no more denying there was a huge problem. Even ten years on, I’m still much slower than I used to be. I look back and am amazed at how long it took for me to do things, like, two years to decide to get a gmail account: after a first abortive attempt where the sign-in page overwhelmed me (yup, I was in bad shape), the second attempt two years later went OK because it all made sense to me at last but it went very very very slowly. After I signed up, I probably took a nap because that’s how things went back then. Even today, I use my compensating strategies to respond to whatever and those who know me know to give me time to respond, especially if they’re asking me to make a decision, like do you want to go out for coffee or, even harder, where do you want to go.

This slow-down was made worse for me because my processing speed was so damn fast pre-injury. There was one friend who every single time we talked on the phone would say she missed my quick comebacks. Argh! I did not need to be reminded of what I’d lost. To say I was upset after those calls would be an understatement. Only brain biofeedback at the ADD Centre restored to me some measure of what I’d lost. There are different ways, computerized and non, to measure processing speed, which is a measure of how fast the brain computes, including the IQ test. The ADD Centre Director wanted to see how much their treatment had improved my IQ. All measures were up dramatically near where they should be, except for processing speed which did go up but not nearly enough for me. Sigh. I’ve almost let go of my desire to have it back to where it was, and I try to console myself with the fact that at least it had gone up. It could also be one reason why I prefer written communication to verbal because with the former speed is not an issue. (There are other reasons too. See below.)

* Unable to pay attention

Man, that was an understatement. Flighty Shireen was me, about as still as a hummingbird. There are five kinds of attention, and I’d lost every one of them. The medical model taught me compensation strategies — loved the one about social talking — no one notices if you’re paying attention so don’t worry if you zone in and out, just nod and say uh-huh — but it was brain biofeedback that restored to me most kinds of attention, except…

* Unable to focus on one person talking to me in a crowd or group

…group attention still sucks eggs. I find groups, crowds, parties, eating or having coffee with more than a couple of people, overwhelming. It isn’t just the attention required, it’s also the sensory overload. But trying to pay attention to what several are saying at once or rapidly one after the other, as is the way in groups, is very very difficult and requires much mental energy, tiring me quickly.

* Unable to refocus after being interrupted

* Unable to multi-task (it’s a good thing our kitchen counter is properly siliconed, for the “I can do five things at once” old me is still a bit slow in getting the new me message “one task only at a time”)

Every now and then I’ll still try to multitask or someone will start talking to me while I’m trying to, like, slice bread. Doesn’t work, although it no longer freezes my brain, just slows me down, and I can feel the effort. It’s a conundrum because I’d like to talk and slice bread at the same time. Oh well.

* Reading and writing problems (I’m still discovering some of these as my “homework” becomes more complex)

Oh boy, had I barely scratched the surface of this one. And may I say that the people in the medical model really didn’t get it, that just because I could string sentences together didn’t mean I could write, that writing is more than words, it’s memory, it’s concepts, it’s pictures. Without all those, it’s difficult to be a writer. And may I say, that being told to give up my dream or postpone it a decade was not OK. Alright, I get that those who didn’t understand the fullness of this loss and those who said go on to something else didn’t know better, but that’s no excuse. Ignorance is not excusable. This area is where I felt most the schism between the medical model and the psychological model.

Again, brain biofeedback ultimately gave me back my ability to write, and before that, it was Paul Lima through his e-mail writing course who showed me a new way to write so that memory was no longer an impediment. Even though I’m writing my second book, a novel, I still can’t remember what I’ve written. I go from chapter to chapter having no clue what I wrote before, being totally reliant on my outline, which becomes a bit of a problemo when I deviate from it in writing. I didn’t have that problem with Lifeliner because it was non-fiction; I had to stick to facts! But a novel…

As for reading, well, that’s the hardest thing for me to cope with. I have to read things over and over to ensure I understand them right, and when I don’t, well… Brain biofeedback started to give me back the “big picture” part of reading, the part that allows you to see the whole story and where you are in the context of it, or to be aware of more than what’s just under your nose. I’ve learnt to just enjoy reading without expecting to remember it (and BTW people who say I don’t remember the books I’ve read, as if they’re the same as me so I don’t really have a problem, irritate me because I’m not talking about remembering the specifics months and years after reading it, but in the moment!).

Still I want to read properly again for my writing. Yet I continue to have trouble following complex material, retaining it, learning from it, and producing new ideas or understanding within myself. The Sony Reader may actually help me read easier because of its uncluttered interface and zoom feature, which means I focus only on the text I’m reading and don’t see anything else. We’ll see.

* Memory problems

* Communication problems (e.g., hunting for words, circling around what I want to say)

After my discharge from neurorehab, I had one counsellor who would get impatient with how long I took to get to my point and would interrupt me until the day I yelled at him to stop it. If given time, I’d find my point, I informed him, like how come you don’t know. He never did feel the need to learn about brain injuries. I quit. Unfortunately, he’s not alone in that attitude.

* Problems understanding others — the more attention required, the worse I get, and no, I’m not going deaf!

* Vision in blind eye improved so I can now recognize objects with it

OMG, this is so weird. Not only can I recognize objects, but last Fall the light levels went up to normal, and this week, I swear to God, I centre vision is returning. How that is possible when my macula is degenerated is beyond me. I figured that my brain was suppressing what my eyeball could see and the injury injured that part of my brain, hence the initial improvements. But the improvements these days are eyeball ones. Totally impossible.

* Loss of “who I am”

When I was growing up, it was fashionable for women to go around saying I need to find myself. No offence, but after you’ve died while alive and have to recreate a new personality, a new way of being, this need to find oneself when one has a stable brain and personality is small potatoes. I was talking recently to a fellow brain injured person about dealing with changes in personality — and as difficult as it is for those around us, it’s hell for those of us in it — and she forced me to think about what had never changed in me: ethics. I still cannot describe myself but at least I’m no longer in the stormy seas of not knowing who I am, of being cast back to being 2 years old and having to start personality building all over again, of being cast back to adolescence and discovering my (new) identity all over again (with the attendant emotional roller coaster I might add!). Who wants to relive the teenage years, I ask!

* Olfactory hallucinations (food, usually in the wee hours, just so I can get real hungry)

* Fatigue

–>  As if the fibromyalgia wasn’t enough, now I have a new kind of fatigue: after 15 minutes of mental work, my brain feels like it used to after a full day of studying and taking university courses. And the brain injury has set off my fibromyalgia again, after I had finally gotten it under control. EVERYTHING we do uses energy. The physical fatigue is like NiMH rechargeable batteries that are always at 20 percent power and suddenly dropping to zero upon extra exertion. The mental like having a 52 W light bulb for a brain, instead of the standard 60 W, the difference being undetectable by most, which then dims down upon mental exertion and re-lights itself only after extended rest. I define exertion as anything from dictating for 10 minutes (I was using Dragon Naturally Speaking instead of the keyboard as still had weakness in arms), to filling the dishwasher, to reading a few pages of a book (um, try being truthful medear, it was exactly two pages per day I was up to at that point!), to being in a car. We’re not talking a huge amount of work here, which means the exhaustion has no satisfaction in it, as after a hard day’s work.

* Front of my brain, behind my forehead, hurts when used, and sometimes feels cold

This disappeared in the last year or so, only to return, albeit at lower power, with writing my novel and relearning a low-GI diet.

* Sleep changed

Many things have helped incrementally, but the most dramatic change came when I began taking 2000IUs Vitamin D this past Fall, as long as I take the full dose by lunchtime. Still, lack of sleep continues to be a big impediment to proper regeneration and healing.

* Irritable, angry

Ahem. Not a great place to be; not great for those around you either. Brain biofeedback diminished irritability; daily use of the StressEraser pretty much erased it. As for anger, artichokes, acupuncture, and authoring has helped. Part of the problem is the filters in the brain are gone or don’t have the energy to work, the filters that automatically assess every stimulant in the environment and before they impinge upon a person, toss those one doesn’t need to pay attention to like ticking clocks, particular sound pitches, clutter, faint scents, feel of surfaces on skin, etc. etc.

* Impatient

* Stress levels HUGE

After I wrote this, I attended a stress management course at the Toronto Rehabilitation Institute as an outpatient. They measured our stress levels and our current pre-course stress coping levels as part of their research (TRI is a teaching hospital). I was at the top on both, but my coping skills were not enough for my stress levels, and I just loved learning the fact that my stress levels meant I had an 80% chance of serious illness, like I didn’t have enough to worry about. I was also still in denial about my reading and only much, much later understood that reading was no longer a stress releaser for me but, in fact, a stressor. This was borne home to me when my trainer at the ADD Centre said to me one day, “you’ve lost your fear of reading!”

I often wondered if I looked like I was on mega-doses of steroids because of these stress levels, but no doctor ever measured that — one has to wonder why they didn’t think about it — so I don’t know.

* Apathetic, couldn’t care less

* Time problems

* Denial (big-time, hence this newsletter idea from my social worker)

* Loss of curiosity

I was Miss-annoying-stop-asking-questions-already-Shireen!-curious pre-injury. I finally got glimmers of it after a year of brain biofeedback. Often, I’d tell myself, “this situation calls for curiosity, ask a question already”! Then, I’d have to think hard about what I’m supposed to ask, and then, of course, with my slow thinking, the opportunity would often slide on by. Sigh. I hate being incurious. It makes you disengage from the world.

* Loss of humour

It took about a year to start coming back. My old GP would test my progress by cracking jokes and seeing how long it would take me to pick up on them, if I did. It’s not the same as before, fer sure.

* Loss of empathy

There’s compassion; then there’s empathy. Both were gone. Pre-injury, I could put myself into another person’s shoes and experience their experience. It was like that woman in that Star Trek episode who took on Kirk’s injuries. I don’t know how I did it, but I know now it takes a hell of a lot of mental energy, and it was part of why people told me their most intimate secrets before they even knew what they were doing (as a child, I had to teach myself to differentiate myself from others’ experiences, and I was 10 when older kids started telling me their secrets and then be horrified later that they’d done that and relieved I knew how to keep my mouth shut). That’s empathy. Compassion is feeling for people, but not feeling what they feel. My psychologist said they’re not gone, they’re just buried, and when one’s own experiences are so overwhelming, you have nothing left for others. I don’t know where these are, but when I have flashes of empathy, it’s draining and I don’t like it. Funny how something that was so central to my identity before, the loss of which threw me big time, just like Troi’s loss of her empathic sense in ST:TNG threw her, I don’t like now.

* Loss of listening skills

This has improved. The brain biofeedback kick-started it back, and spontaneous healing since has kept it improving. Still, I can be quite distracted by things going on around me or have trouble sustaining attention. I am not remotely back to where I was when I could listen on the phone comfortably and alertly for up to four hours, something I had to do to interview people for Lifeliner. Listening is also part of that whole compassion-curiosity-concentration thing.

* Altered perceptions

This slowly returned to normal, thank goodness.

* Dizziness, nausea (lying down made it worse or brought it on)

This is pretty much gone.

To learn more about closed head injury or mild head injury, go to:

Unfortunately, these links no longer exist. Such is the transient life of articles on the web.

For a Virgin.net freespace link, I wrote: note the reference to creative writers. What I remember about that is that lawyers, scientists, and creative writers are most affected by closed head injuries. Gee, lucky me.

A UCLA link doesn’t load but I found this one, which came live about 3 years after I wrote this e-mail: http://www.scienceblog.com/community/older/archives/O/a/ucl0961.shtml

For a MADD.org link, I wrote: I can relate to Mary’s fear of making mistakes since skills I had once taken for granted have become unreliable, and my physical injuries paradoxically saved me from losing total confidence like Jack since I was unable to work for quite awhile and didn’t hit the full cognitive effects of my brain injury until after it was diagnosed in September 2000 (hahahaha, so not true; poor me back then had no idea! Ah well, shortly after I wrote this, I discovered decision-making had fled me. And about 5.5 years later, after discovering other losses as I improved slowly, I discovered the last of the cognitive effects of my brain injury: no more ability to problem solve.), and like Trish I discovered that what was once soothing, playing the piano for her, reading for me, was changed so that it is now frustrating and depressing.

These links I’ve looked at briefly (conentration and energy problems get in my way of doing Net research in the way I used to), but they look interesting:

Briefly meant I skimmed the headline and used my still-intact logic and reasoning to figure out sort-of what they were about. I still do that, though I don’t think anyone notices.

http://tbichat.org/ (this one doesn’t seem to work anymore or slow to load)

http://www.neuroskills.com/

If there are any others you come across, please feel free to forward them to me. Thanks!

I was soooo optimistic. Too bad YouTube didn’t exist back then, for though I bet not many, if any, read the links, never mind briefly checked them out, and they sure as heck never did any research on my behalf, they would’ve probably watched a video. So here is one (the guy is a good speaker so much more interesting than you’d expect):


I like how he says if the person was a pain in the neck pre-brain injury, then man, are they hard to handle now. Brainline.org has lots of good videos, articles, and tips on it. They’re also well-designed for the brain-injured person. Many brain injury sites seem to forget that their target market has problems reading and need clear, well-ordered sites to be able to use them.

Now for the Good Stuff — What Has Changed for the Better?
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Three processes have resulted in improvements: neurotherapy, learning compensating and coping skills, the brain healing or re-wiring itself. I started to notice the latter happening from November 2000 to January 2001 when my memory began to return in bits and pieces, when the blanket of injury anger and irritability lifted (it descends occasionally instead of smothering me all the time and let’s be honest, I was glossing over, trying to be upbeat, still thinking this was going away soon, for neither truly diminished till after brain biofeedback and even now can be a problem), when my curiosity, empathy, listening skills, humour returned (but this is not the right word because they are different than before the accident), when my impatience decreased, and when my dizziness and nausea started to dissipate.

Holy crap, was I out to lunch! All such BS. Although I was self-aware, something my therapists celebrated as being good for healing, I think those altered perceptions seriously kept me from understanding that no way had those things returned at that point, except maybe minimally, and definitely not empathy or listening. And that dizziness kept returning big time for several more years. Guess every couple of weeks as opposed to almost daily is dissipation though.

The neurotherapy (now called audiovisual entrainment) started in March 2000. Neurotherapy targets the brain waves to decrease Theta (twilight) and Delta (sleep) and to increase Beta (concentration, alert) waves. And as a side benefit, my vision improved.

TIP — Better Vision

Tired eyes really means your brain needs a rest. Try some relaxation or 5 minutes of deep breathing. The latest issue of the Reader’s Digest has an excellent article on deep breathing.

The first dramatic result of neurotherapy was in my sleep. I sleep longer, more soundly, with fewer nightmares. I also became more alert and much less anxious. Immediate, but temporary, results included increased concentration skills.

I learned compensating and coping skills mostly from the great people at the Toronto Rehabilitation Institute (see http://www.torontorehab.on.ca/):  occupational therapist, social worker, and speech language therapist. But some skills I learned on my own.

The first thing I did to compensate for my memory loss, reading, and time problems was to purchase a Handspring Visor Deluxe, a Palm Pilot-like device (now I use an iPod Touch as it’s the only PDA left on the market). Aside from it reminding me of appointments (not only forgetfullnes problematic here but also I would misread the appointment time — alarms solve both problems), the big benefit of the Visor is its floating events that can be alarmed, which when not completed, float to the next day and buzz again; it also has springboard modules, like an MP3 Player, which I use to relax during acupuncture. I discovered the Visor acts as an excellent incentive to get things done (unless of course I get so energy-less that I ignore the X-Files music until Normand growls at me). Recently, I started using the MP3 Player to listen to books on tape on the subway — because of attention difficulties, it is no longer easy for me to read on the train or bus. But while listening to a book on tape, I can close my eyes to shut out visual distractions and jack up the volume to drown out ambient noise. It’s much easier to follow a book that way. My speech therapist made this suggestion.

I was outright lying here, in total denial, the reason for writing the e-mail in the first place. I soon gave up audiobooks because I’d zone out, couldn’t rewind, and be totally lost. I switched to listening to music on the subway, and I still do that.

The first thing the occupational therapist taught me was how to conserve my energy so that I can do more things in one day and maintain productivity from day-to-day.

TIP — Energy Conservation

Pacing: pace any activity so as to be able to continue in that activity for longer. For me, pacing means doing activities in 10-minute increments or reading in 2-4 page increments with 3-5 minute breaks. Also, limiting different activities to different time lengths, depending upon how fatiguing they are.

Prioritizing: who of us haven’t heard of this one, and how many of us do this?!  Since I have few alert hours, mostly in the morning, I reserve my mentally or physically challenging homework for then. I try to defer phone calls, e-mails, appointments for the afternoon. When I don’t, I’m usually unable to exercise and to write or read work-related material that day. Evenings I like to either do more work if I’ve rested my brain enough in the afternoon, or simply vegetate which is the best way to keep fatigue at bay, even if it is BORING.

Planning: schedule my life to death is how I interpret this one, but I do get much more done when I set goals (see next Tip), plan how and when to do them, and put them in my Visor.

Posture: change position regularly so as not to tire muscles.

Efficiency: learn to do the familiar in a more efficient way, like using a machine mixer instead of a hand mixer or whisk, or placing paper and pens in easy reach so as to avoid having to stand up and walk to get a pen or the need to stretch up to a high shelf for fresh paper.

TIP — SMART Goals

Every goal must meet the following criteria: Specific, Measurable, Attainable, Relevant, Timely. SMART. Lose weight is not a SMART goal; lose 5kg in 2 months because of being overweight is a SMART goal.

Measure how well a goal is achieved using the Goal Attainment Scale. The scale has five increments. The first and middle one is the goal; the two below represent decreasingly not meeting the goal and are -1 and -2; and the two above represent increasingly exceeding the goal and are +1 and +2. So,for example, simple cookies and brownies that I can do entirely by myself once a week is my baking goal; ice cream is my +1; baking twice a week, including ice-cream and rich gateaux are my +2. Using this scale is very helpful in figuring out goals and how to determine how one achieves them.

It took me years to make ice cream again, years! Have only attempted rich gateaux once or twice, but not at the level I used to bake at. Baking requires attention, patience, and energy.

TIP — Music

I have learned how music can enhance my mental work and energy levels. Apparently, Mozart enhances left-right brain communication. Beethoven’s 5th stimulates high-frequency Beta waves that increase energy. Alberti’s Sonata in D for 2 trumpets stimulates low-frequency Beta waves that produce better focus. I’m not sure how to recognize low Betas, other than listening to the Beta album of the Brainwave Symphony, but any classical or popular music with a fast beat, like Wagner or (the now-obsolete-always-changing-format) Kiss 92FM (only with popular music, you have to like it, otherwise it counters the effect) will produce high Betas. I listen to low Betas when working, to high Betas during breaks or after a mentally strenous activity. My acupuncturist first introduced me to the amazing effect of the low Betas because she found it increased her productivity when writing.

There’s an even better way: audiovisual entrainment. You can set it to stimulate specific brainwaves that lasts several hours or even days and has a build-up effect over time. As I improved and started attempting more cognitive-demanding tasks, I was no longer able to listen to music at the same time as reading to follow instructions, for example, or write Lifeliner. So AV entrainment became even more necessary.

TIP — Organic Food

I, like many, switched to a diet of organically grown food for health reasons, and now stick to it for environmental reasons as well. And about 3 years ago became an almost vegetarian when Normand decided to become one. (Dad had said the research showed that a vegetarian, skim milk diet is best for the heart, and Normand likes animals too much to eat them anymore). I eat meat only at holiday feasts at my parents, but I find it sits heavy in my stomach, and I become sluggish. The big changes I noticed from going organic are MUCH better sleep, a sense of liveliness or of being alive, and less pain. In a word, healthier with all its good connotations. And the bonus is that the food tastes FANTASTIC. The downside to that is that eating conventionally grown fruit or vegetables is like eating cardboard. It’s quite disappointing to find that what Normand or I once enjoyed, no longer tastes of anything.

http://www.rain.org/~sals/my.html is a page FULL of links from around the world relating to organic food in every conceivable way.

Organic food is just one of the key lifestyle elements, others include exercise, setting a routine, and relaxation, that have resulted in my “amazing recovery” (words of my physiotherapist) to date and that will continue to fuel my rehabilitation. Self-discipline in these areas is the hardest part and becomes harder in the face of those who want me to do things their way, and their way also makes me worse.

My speech language therapist works with me on my communication skills — especially the attention aspects (not the mechanical aspects of speech). From her, I’ve learnt to block off unread text in books to reduce distraction, to limit duration of phone conversations, to eliminate visual and auditory distractions where possible, to listen to books on tape, to think about ways I can listen and understand others better. I’ve implemented many of her suggestions. For example, a wonderful woman has organized my office to be free of visual clutter. It is now MUCH easier to focus on my homework. Also, she put much-used stuff within easy reach, and the less-used books on higher shelves.

Another example: I often remain quiet, especially in groups, while I wait for my brain to process the ideas being discussed and come up with a response. But I’m now asking people to repeat themselves or asking for clarification. Her latest suggestion is for me to ask people to speak slower. Well, it’s the moron factor I’m having a hard time getting past, to make this request. However, I have been noticing that it’s easier to follow those who speak slowly and give me a few seconds to respond than those who chatter away, especially on the phone. I guess this therapist knows whereof she speaks!

Other things people can do to make it easier for me to participate in group conversations include not interrupting each other, keeping to one topic or idea at a time, waiting for me to fully express my comments, not interrupting, avoiding cross- chatter, speaking more in sound bites than lengthy monologues, not interrupting… In one-on-one conversations I feel more like my old self; even so I sometimes start to zone out and will interrupt. Normand made an insightful comment to me about that: he said I interrupt when I need a break in listening, in other words, I can’t concentrate or absorb any more.

Since my brain no longer cares about time — it will heal when it feels like it, it will work for as little as it wants — I am learning to drop out of the North American time race. This includes acknowledging that no one can know how long it will take me to write the book and that I need time to process and respond to a request. So to the latter, I’m learning to say, “Let me think about it.” The only problem with that phrase is it has dismissive connotations, so I need a better one, one that reflects the reality that I really DO need time, whether a few hours or a few days, to think about any request.

Any suggestions for a better phrase? Once I’m comfortable with the idea that everything does not need to have been accomplished yesterday, I’ll have taken a leap towards thriving with my new brain.

My occupational and speech therapists continue to work with me in setting and achieving book-related goals. We started with reading relevant books and journal articles, materials that I had read before so as to make it easier for me to comprehend the text, and I needed to be reacquainted with them anyway. We are now working towards writing a chapter, the easiest and shortest one. No one can tell me how long it will take (that time thing again!), and I now realise I need assistance, especially in the organizational aspect of writing. So to answer all your questions about the book: I don’t know, but I will let you know when it is finished. Please be patient!

It would be over 6 more years.

I have just started a stress management course. I have a big binder full of stuff about stress and how to combat it. One tidbit: apparently rowing is at the top of the scale for reducing tension. So I’m doing something right! (Hahahahaha. Ahem.)

My slowness, coupled with the fatigue and weakness in my right arm, is why I am so far behind in my correspondence. I have started a routine to write to at least one person a week. If I manage my breaks properly and have not overly fatigued myself from previous activities, then I can sometimes write to two people. In this way I hope to eventually catch up, and I apologise to all of you for having to wait so long to hear from me. I AM thinking of you, and I enjoy reading your e-mails and letters. So if you feel like writing to me even if you haven’t heard from me in awhile, please do so!

Pretty much, they mostly didn’t. Phone calls too dwindled down to none.

I still go to acupuncture (which not only keeps my muscle pain and headaches down, but more importantly boosts my energy) and to massage. The latter plus my regular exercises of weights, rowing, movement, and stretches continue the healing process and improve my flexibility and strength. (I had no idea my chronic shortness of breath and bloating was caused by what I thought was helping me and usually does help people, people without brain injuries.) There are still muscle groups in both arms of equal strength, but more and more muscles in the right are getting stronger than the left.

So that’s the scoop! Now you know a little something about closed head injuries and the reality of recovering from and adapting to them.

According to the doctors I’ve seen, closed head injuries are a public health problem that is little recognized and understood and causes untold anguish and loss of productivity, not to mention quality of life. I hope you have found this newsletter informative and interesting!

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  • Marg

    You sure have come a long way….congrats! and yeah you don’t have to go on Thursday 😛

  • Marg

    You sure have come a long way….congrats! and yeah you don’t have to go on Thursday 😛

  • Shireen

    Thank you! You have been a big part of that the last few years. 😀

    LOL!!

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  • As I said on Twitter, fabulously perceptive and articulate post. Tremendous. Wow, thanks.

  • Thank you for your kind words Dave! I’m so glad you liked. As I mentioned to you, I write about these issues in the hopes that it will help someone else.

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  • Superfun Happy Slide

    You know that funny feeling you get when you hear someone talking about stuff you think you’ve experienced? Years ago, I was struck in the head by a smallish hydraulic arm, from a crane. Fortunately, I was wearing a hard hat . . . at least I was . . . until the impact sent the lid flying ten feet in the air, by all accounts. The cold sensation on my forehead and temples really strikes home. The inability to concentrate for years afterward also rings true. Although I never took the time to get diagnosed or tell my family about the accident, I always wondered if my personality issues and problems with teachers was why I struggled so much in high school. Wow, never in a million years would I have thought I’d run into some of the memories your blog shook out of me. Hey, I hope you continue to add to this blog, its in my favourites-list now.

  • That’s cool. After I started meeting people with brain injury, I’d have that similar feeling of having experienced what they were talking about. I found it validating! I’m glad I could do that for you. 🙂 I try and post regularly — that’s my goal although brain injury fatigue etc. gets in the way at times. Thank you for putting my blog in your favourites list!

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