This floating piece of metal is huge. It dwarfs the Redpath sugar plant, which is no tiny building but itself an edifice on the waterfront where people gather to work and play, enjoy life.
As it is with that ship, so it is with reading.
Reading is a huge cognitive process, a monolithic problem that’s a part of, yet is bigger, than the injury of the brain that sits between you and the world.
It looms over the enjoyment of life.
Yet most people can’t see reading as a problem; they talk about that monolith as if it’s not a lake freighter but a tiny sunfish dancing on the waves.
It’s taken me years to first acknowledge that I could not read then to acknowledge the enormity of the problem then to accept it wasn’t going to go away and finally to nag and nag nag my health care providers to truly help me.
My neurodoc began back in January; CCAC said recently, OK, let’s connect you with an agency that helps people learn to read, preferably with one of their ex-high school teachers since it’s the long-form, cognitive aspect of reading you struggle with; and now after the ADD Centre reassessed me this past week, they are going to use my neurodoc’s reading methods with their materials in concert with brain and heart and breathing biofeedback protocols to heal what my EEG reveals as the reading blockage.
I am jumping up and down, screaming in delight!
For the first time, all my health care providers are working on the same issue to complement what the others are doing, with my neurodoc the “non-expert” in reading leading the way. Thank God.
For once I do not feel like a human being being pulled in three different directions as each provider works on totally different issues and don’t talk to each other so that they think I’m only working on what they are doing, which kind of leads to awkward situations where I get questioned on an area one of the others is working on as if I’m not, which then leads to my mind going blank as I grapple with this broadside so that it really does look like I’m doing nada when I’m not. And yes, I’m having trouble blogging and writing too. But I digress.
So my neurodoc is continuing to improve my stamina so that I don’t fatigue to the point of needing a nap and so my will headaches go away. CCAC will hopefully find an ex-high school teacher at a reading-rehab agency who will help me ensure I keep up with my homework, especially in light of my recent out-of-the-blue-forget-to-read issue, and perhaps offer other remedies to restore my reading, maybe even read rhyming poetry to me. And the ADD Centre will treat the damaged areas that are probably responsible for my reading problems while also working on strengthening my recall and being able to spot and understand subtle meanings under timed conditions.
It’s Endless Saturday. I used to call it Waiting Saturday. Like that day when Jesus’s disciples, particularly the women, waited for the Sabbath to be over so that they could visit his grave; like that day, the day after tragedy struck, and no one knew what to do other than wait, my life was one of waiting, of recovering from the shock of my brain injury, waiting for life to return to normal. But normal didn’t come, and my life turned into an Endless Saturday when the tragedy that caused it was behind me yet the new life of promise had not yet come despite working hard to heal my brain.
Well, it wasn’t my life or my injury that was putting me in Endless Saturday, I was informed. It was my attitude. I am surrounded, as most people with brain injury are, with messages of “move on,” “be positive,” “look at what you have, not what you lost,” “accept the changes,” “unpack the boxes of the new you,” “look at how far you’ve come.” Etc. Etc. The messages are endless and come at you from everywhere including from your peers as each brain-injury newbie goes through the same process of parroting the feel-good industry until you want to hurl all over the positivity and inspirational messages. I have never been so sure as I am now that it’s all bunk – it’s all to hide the fact that society and medicine does not want to deal with us, acknowledge our existence, and would rather we pretend we’re happy than to create a world in which we can be.
Oh-oh there goes my attitude again.
I’m not positive enough.
I don’t look at what I have enough.
I don’t appreciate how far I’ve come enough.
And then I remember England.
In less than 24 hours of arriving on England’s green and dimmer shores, I was free of my life. Toronto was behind me. Ahead of me lay 12 days of totally being allowed to be me, to be in control of my own life. Twelve days of not being at the mercy of others. Early into my trip, I mailed my biofeedback trainer a postcard from the British Museum. Yup, people still love the old-fashioned postcard. And I found a great one. She knew immediately upon reading whatever it was I wrote that I was happy. Then when I returned, my neurodoc was struck by how I “appeared markedly and significantly better.” It so dumbfounded him that he has changed his perception of my life, which he now calls my “Ontario life.”
What is the difference between my “Ontario life” before I went on vacation and after? I asked. There is no difference other than his perception and my ability to tolerate it. Actually, I don’t think there’s much difference in my tolerance: I went because I was about to crack apart.
I am again.
Ever since my “Ontario life” reasserted itself – it took only about 5 days to wallop me – I have been feeling like Wile E Coyote after he’s been conked and cracks appear all over him. I’m in that place as the cracks widen, just before he fractures into a million pieces. I am like the Angel of Denial (above), except I’m not denying the reality of my life but warding off its blows.
My neurodoc wanted to know: how many factors were responsible for me
my affect being reasonably good
not having much irritability
being better grounded
not being stressed
having a better quality of feeling (whatever that means) after my England trip?
Only one: relationships.
No, I lie. Two. Relationships and the energy drain of activities of daily living.
Whilst in England, I didn’t have to cook, clean, deal with Toronto’s garbage system, travel on a system that is hostile to the invisibly disabled, make the hundreds of decisions that are necessary to take care of one’s home and oneself. The biggest decision I had to make was whether to order the Continental breakfast or porridge or pancakes on the third morning of my hotel stay. Believe it or not, it took me a long time to decide because my brain injury has destroyed my decision-making ability, and it’s only slightly returned, mostly because of strategies like making the same choices in order to cut down on the number of decisions. But that day I didn’t want same-old, same-old breakfast. I wanted a treat. I had a choice of two treats I liked. That was enough to paralyse me until I asked myself for the tenth time what does my stomach want. I will rant about how much easier it is to travel on the Underground than on the TTC another day. And how English society accepts and naturally accommodates invisible disabilities.
As for relationships . . . in England, they were, in the words of my neurodoc, like a “comfortable old shoe.” Balanced, pleasant, vital, stimulating, and most of all, to my amazement, everyone looked at me as if they wanted to talk to me, as if they were enjoying my conversation. As my neurodoc put it, I wasn’t having to navigate and think my way around them and our conversations – even when a conflict arose out of my inability to express my (rather complex) idea. I was a little frustrated with myself, to be honest. But that didn’t matter. Hours later, my idea was picked up and expanded upon by one of my relatives. I was floored. And then there was the fact they told me over and over to ask for help, and when I did, help was given. Communication happened. When I needed it. Not in some time-delay fashion where I just have to wait until it’s convenient for the other no matter the effect on me.
Waiting isn’t just a matter of patience; waiting can be a matter of health and functionality. People here can’t see the difference between when waiting is about patience versus when it will affect a person’s functioning.
And now I’m back in Toronto. And once again I have to navigate people’s communications styles. One person does it one way; another does it another way. I have to remember which is which and be okay with whatever method the other person informs me is the only way they’ll communicate with me. In England, everyone texted or emailed or phoned, whichever suited me best because none of them seemed fussed about using smartphones or old-fashioned telephones or computers. Any works. They even know how to check their bloody emails and voice mails; I didn’t have to check up on them to ensure they’d received them (once I had the correct address). Or try and remember what message I left. Here, it’s a fucking nightmare of “I’m not going to blah blah blah.” (Or I’m too busy. Or I’m not interested in talking about that. Or you’re not my family. Funny then how my older cousin saw me as family.) Here, no one ever says: oh, hmmm, Shireen is the one with the brain injury, maybe we should ask her how she communicates best in order to reduce the effort it takes for her to reach out and be able to understand us. Maybe we should be the ones facilitating communication so that she’s not isolated and she has the energy to live her life, to get through her treatments, to be less stressed. I ranted that at my neurodoc. “Good point,” was his response. Uh-huh.
After my health care team saw the dramatic change to happiness in me – sans needing any positivity or inspirational shit despite still dealing with my brain injury and PTSD – they asked: are you moving?
I didn’t answer really. I was born in London. I’m a Canadian but also a British citizen.
Where do I belong?
My neurodoc noticed and said: you have unfinished business here.
He’s right, but the tediousness (my neurodoc’s word) of most of my IRL relationships will kill me. Anyone who denies the social biology of the human being and necessary interdependence is a fool. The destruction of our society won’t come from terrorism but from worshipping the gods of busy-ness and silos, from the fear of mind, soul intimacy.
What’s flying across “the pond” like against the prevailing winds? Well, sit back in your narrowest chair, stretch your feet out till your knees are half bent, and let me tell you. Or watch!
To begin, I used an e-Boarding Pass on my iPhone; and took one small suitcase whose zip is Herculean in strength, a camera bag, and a large purse. Plus food for the wait.
Checking in was a breeze. Air Canada emailed me 24 hours before my flight that I could check in. While still in bed, I clicked the link and checked in. My boarding pass automatically appeared in my iPhone’s Passbook. Wow. For a person with a brain injury, being able to check in at your own pace in the quiet comfort of your own home or hotel room = awesome.
Checking in at the airport was quick. Both at Pearson and Heathrow, I didn’t have to wait for a self-serve kiosk, even though I flew out of Toronto on the busiest day of the year. My parents helped me become familiar with this new system at Pearson, so no probs at Heathrow plus Heathrow’s kiosk had a better smartphone QR code reader. In Pearson, I had to manually enter my booking reference number because the kiosk couldn’t read my iPhone. Both kiosks read my passport quickly, but the one at Heathrow had a better animation to show you how to place it. I must’ve stood at the Pearson kiosk for five minutes trying to comprehend its hyperspeed animation. The baggage ticket printed out quickly. But in case of difficulty, agents are all over the place, offering to help. And the lineup for checking in your tagged baggage is short and zips along.
Security made me nervous. But Air Canada, the government of Canada, and Heathrow have websites with loads of info on how to prepare. I went over them all ad nauseum, so when I got there … well, I’ve never gotten breezed through so quickly before and with no beeping either! It took twenty minutes from entering Heathrow Terminal 2 on the bus to starting for the B41 gate. Not bad. It took almost as long walking to my gate where they boarded us swiftly. Nothing like my flight to England!
The insanely early wake-up time is worth the faster boarding and less cattle-car-like morning flight. Until the idiot across the aisle is so inept, he can’t push his bag into the overhead bin properly, and it bounces off the right side of my head and shoulder like a fat bolster. I turn around confused, while someone mutters, that could’ve been my head. The inept guy takes my bin spot. I tell him to shove his bag over.
Oh wait, it’s only 11 minutes. We’re moving – yay!!
Oh wait, as in literally. There’s a queue of planes. Typical, eh? All those Brits hogging the lane to the runway. And now there’s an SAS trying to sneak in. Always one of those: even airplanes do it.
We creep forward under the unusually London sunny skies, our sleek old Boeing 767–300 plane headed to Toronto rain. Ugh. Worse, the person behind me has their music up loud (later, she sticks her knees in my back). It’s like sitting on the subway. The London Underground, not so much. Only once was I bothered by headset leak in London.
Oh wait, we’re moving, squeezing ahead of a Virgin plane. We go to the far end of the runway. A little smoggy out there, or as Londoners like to say: we have haze.
And now the engines roar. It’s 9:31, only 31 minutes after the official boarding time. I haz a window seat this flight. Taking off is freaking awesome!
I am so excited, I forget to chew my gum.
Window seats are the best … well, until you need to go to the loo (or the toi-let as Brits say) and the person beside you is snoozing.
The 767 being older is noisier than the 777. At least, if you need to be deafened, it drowns out the headphone leakage and muffles the kid making airplane flying noises.
Although the seats are as thin as the 777’s – you can feel the person reaching into the seat pocket behind you – and the aisles are just as narrow and the toilets as tiny, it feels more what I’m used to somehow. Really, how do fat people fly? The seat is the least of the problems. The aisles and toilets are practically unnavigable. You stagger down the aisle going sorry, sorry because the narrower the space, the harder it is to balance.
9:49am. Turbulence time. We were told it would be bumpy over Ireland or the Irish Sea, but we’re still over England. Even the flight attendants have to sit and buckle up. Fifteen minutes he said. But at 9:53, the seatbelt sign goes off. And that’s when smooth becomes a tad shaky, just normal air bumps but for the fearful, a little worrying I would imagine.
(When I got off my flight to London, a guy behind me was exclaiming over how turbulent the ride was. Turbulent? I thought. Yeah, twas bumpy but not bad. All in the perspective!)
Once the turbulence ends, breakfast arrives pronto – for me. Special meals come first. Then everyone else. That means I’m eating while my seatmates wait. A bit awkward when sitting in the back as the back seat passengers are served last. Not so bad on the way to London when I was sitting up front and the carts began there.
So, I don’t know, but piping and spicy hot chickpeas and soggy samosas aren’t my idea of an ovo-lacto vegetarian breakfast. Fruit and yoghurt aren’t bad. I’m surprised how sweet the grapes are.
In mid-eating, I glance out and spot a contrail off our starboard wing. It’s from a much faster plane. Then another appears. Then we’re veering toward them and crossing almost through them. Then I spot two more not far off, as the plane flies.
The most contrails I’ve ever seen before – and I’ve been a window seat fan for decades – was one years ago when one plane below us banked south as we both left Ireland behind us. Man, those air traffic controllers have a lot of traffic to handle these days. A bit scary when yet another plane appears and you know there’s not much room for error as it disappears below you. Kind of close. Maybe that’s why we rose up as we headed over the Atlantic.
Scrambled eggs with chicken sausage or apple pancakes are for the regulars. My seatmate is given her breakfast, oh, about a half hour after I swallow the last of mine.
When someone is about to hurl, there’s always a way to squish the stomach and get past the food cart. Airplane designers don’t take into account such a necessity!
Time to settle down into the bulk of the flight. We’ve been flying only 2.5 hours; another 5.5 to go. I put my display into Autocycle maps, and the day/night map announced it’s currently 9:58 AM. No, it’s not, I think, my iPhone says 11:58. Oh, we’ve crossed Iceland, crossed two time zones, or in other words, the equivalent of two provinces.
The ocean is blue and quiet. I remember one year, I was a teen, looking through the 747 window and seeing a gray ocean with waves so large, their crests were easily visible from our great height.
People congest the aisle queuing for the loo after mealtime while attendants clear up and offer duty free. My back is killing me; the only thing to do is lean back, slide my butt down, stretch my legs out under the seat in front of me, and rotate my ankles sans hitting the underside of the seat. The poor guy is trying to nap. Good luck with that. His blind is down, but a few of us – like me – have ours up, letting in the less-filtered sunlight of 40k feet up. Five hours to go.
There’s ice in them there ocean. Lots of it. Too higgledy piggledy to be waves … right??? Well, maybe both waves and ice.
This is when I’m not too fussed about being stuck on a plane, like when I flew over to England. I’d rather be staring out at the graduated blue of the sky, the matching blue ocean, and puffy, swirling clouds dividing the two than back home, getting back into my routine.
Halfway through, and the toilet is a cesspit. Sigh. There’s something to be said for sitting up front with the economy biz people. They’re not such pigs.
The porthole in the door at the back of the 767 is really, really small and round. The 777 doesn’t have as big a window as I remember the 747 having, but it’s massive compared to this. Still, it’s quiet back here. It’s time for the four-hour-get-the-hell-out-of-my-seat stretch. Unlike in the 777, no one else knows about this place, so I’m alone (apart from the occasional toilet user).
We haven’t reached Canada’s coast yet. Snack time though. Pretzels. Artificial yuck. But I’m hungry.
2:28pm (guess I should switch to Toronto time). I see ice! Canada!!
I ogle the geography of our glorious country for most of the rest of the flight for as long as the clouds will let me, which happily is a lot.
Snack time. Again. I get a tomato mint cumin wrap in a box. I’m glad I kept the napkin from my pretzels because none comes with my wrap. The regulars get the same wrap a little while later since they run out of the chicken version quickly. This time the regulars’ wait time is very short. The wrap has that over-nuked mouth feel. Oh well. We’re almost home.
Home. Sigh. We’re flying over Québec, almost near Trois-Rivières or as my French Canadian ex-inlaws used to say: Three Rivers.
There are British tourists all around me on this Air Canada Tango flight. They’re heading to Florida. I hadn’t known Toronto was a change destination for British travellers to the U.S.
I refuse a drink. The flight attendant asks: you’re timing for the toilets. Yup. It isn’t that bad, he hedges. Worst I’ve seen! I half-joke. He laughs wryly and moves on.
The plane bumps on air and shakes back and forth.
It’s 4:27pm GMT, and I think we’re lower. I really should change my time. Later.
4:36pm GMT: a flurry of activity as the flight attendants bring around the landing cards. Canada’s are big compared to the UK’s. Yet somehow you’re not supposed to fold them while carrying all your stuff and staggering off a long flight. The British have more common sense in the design of their cards. Seems appropo this is timed for when we are close to flying over and north of Ottawa.
(Later, I learn they have kiosks that demand you tear off the side part and discard it – really, I could have done that on the plane when not laden down – read the cards, ask questions, then spit out a copy you show bored customs agents about, I don’t know, three times with the third taking it from you.)
Pilot comes on to say we’ll be descending in 20, landing at 1:25 local time, only 10 minutes late, and then he gives us the bad news of light East winds, overcast, rain, and 2C. Well, for now, I can still enjoy the sun. But OK, really is time to change my iPhone’s time zone.
It’s 1:01pm Toronto time, time to gather up all the various bits of me and put them back in my purse. I’ve fully charged my iPhone through the handy seat plug. Nice to have one of my own, unlike on my last flight.
We’re in a bank of clouds, dropping to the ground. Looking at the wing, it’s like we’re standing still.
Flaps up, only ten minutes from landing. Person in front of me hasn’t put up his seat. Two flight attendants have gone up the other aisle checking recalcitrants. None on my side. Sheesh. Finally one arrives and helps the young man pull forward his seat back.
The light is dimming as we descend through the clouds. Boy, the popping in the ears is bad. Not forgetting my gum this time!
We’re on the ground. Cloudy cloudy cloudy. But unlike London, I feel like I can still see, like I don’t have my sunglasses on. Toronto light levels are much higher than England’s. My iPhone connects to Rogers but no can do in the texting department. I guess Lebara doesn’t let you use your UK nano-SIM card outside of the UK.
And that’s it folks. Now comes the tedium of standing up on legs too stiff to move, either competing with or waiting for crowds to exit the plane as we funnel through two customs agents at the end of the passage from the plane, waiting – oh, not waiting this time! – for my baggage, then finding my prebooked limo. Ta-ta.
I’ve been thinking a lot lately about how the medical system treats the “mental illness” aspect of brain injury, that is, moods, thinking styles, that sort of thing. I’ve never been put on drugs for depression or concentration problems, but I know others who have, and my neurodoc has talked to me several times about it (which annoys the heck out of me). Back in 2005, I began looking in earnest at other “mental” issues as a way to figure out how to heal my brain injury. And so I looked at ADD to see how to treat my attention problems; I knew about depression from my studies and thought about the various ways it’s treated and is different from brain injury affect to see how to get my affect back (absent or flat affect is not the same as depression but close enough to be instructive); and I opened my mind to learning more about other mental illnesses and how I may apply their lessons to my own issues.
What I learnt:
Medication is the main modality used to treat mental illness: Ritalin, Prozac, Abilify, Clozaril, etc.
Retraining brainwaves is my main modality: beta brainwaves, high alpha, gamma, etc.
More and more, I hear patients being concerned about medications or medicine in pill form, how they are used, and how they are abused by physicians as a way to not see patients regularly. A person I follow tweeted this video by Jonny Benjamin:
Although I disagree with his idea that the pharmaceutical industry is using drugs to numb the masses*, he is bang on in the rest of the video. Side effects or negative effects are a huge issue for most kinds of medications, psychoactive or not, yet too many physicians dismiss these concerns – to their patients’ peril. (Some don’t.) Patients suffering from negative effects will either doctor shop to go off the drugs or stop them on their own; or they will stay on, and gradually the negative effects will become worse than the mental illness. I chronicled my own decision to get off atenolol, without telling my doctor, because of the increasing number of problems that had made my life hellish. We don’t tell our doctors because we know doctors will not listen to us and will argue with us until we feel defeated. We feel we have no choice but to do it on our own.
This got me to thinking about the idea that we can only treat the brain via a neurochemical modality. Physicians have gotten into a rut of thinking that the only way to treat the brain is via chemicals that affect neurotransmitters or other chemical interactions in the brain. The pill is the modality; the ingredients in the pill are the specific action of treatment.
The pill modality leads to both beneficial and negative effects because it’s like a blunderbuss. The chemicals go everywhere in the brain and the body, not just in the injured or malfunctioning area of the brain.
But the brain – our entire body actually – is also an electrical organ. The brain produces brainwaves. While neurotransmitters work locally in the synapses between neurons, brainwaves are generated along the axons of single neurons or as synchronized activity among many neurons. They are still not fully understood, but then neither are neurotransmitters and physicians and pharmaceutical companies have no problem blindly playing with those. Brainwaves can be associated with particular neurotransmitters; hence, my experimentation with gamma enhancement brain biofeedback. In other words, one can potentially increase a desired neurotransmitter, not through direct chemical interaction, but through enhancing a particular brainwave in a particular region of the brain.
In this way of treating, brain biofeedback is the modality; the targetted brainwaves and electrode placements are the specific action of treatment.
There is also an additional modality: direct stimulation of the brain via tDCS (transcranial direct current stimulation). The specific action of treatment is the time, current, and location on the scalp.
The brain biofeedback and tDCS modalities have pretty much only beneficial effects (dizziness and an itchy scalp the only brief negative effects AFAIK) because they’re like darts. The only parts of the brain targetted lie directly beneath the tiny electrodes or tDCS sponge.
I have observed the relative merits of these two modalities in my life. I have met people with brain injury who were functioning at a much higher level than me and did so for years. But they were being treated via the pill modality. After I re-started brain biofeedback for gamma enhancement, I flew past them and am now functioning better than they are. This is not fair, that I have been able to do this and that they are not aware of the biofeedback modality or do not have access to it.
We need to challenge our physicians, to kick them out of their rigid mindset that the only action of treatment is chemical or heavy duty electrical like ECT or surgical, so that we can advance the healing of mental illness and brain injury and improve the quality and functionality of our lives.
*It may look like numbing the masses, but I believe it’s more about a rigid mindset that cannot conceive of other ways of treating the human body and doesn’t like being made uncomfortable through being forced to think differently. And for the industries involved, there’s a profit motivation to also turn healthy variability in the human condition into diseases needing pills.
A few weeks ago, BrainLine tweeted: “Join the #LoveYourBrain campaign.”
I asked them what that was about, and @TheCrashReel replied that it’s a campaign to educate others about brain injury, concussion, and safety. There are a few of these kinds of awareness campaigns going on in Canada, the US, and other countries, but I was rather taken by the hashtag of this one. #LoveYourBrain. It’s so evocative, and it’s so counter to what we do. Our brains are what keep us alive. No brains, no life. Yet we treat our brains as if they were less important than our appendix. It’s okay to box the head, but not the body. Hockey fights are all about pounding the head and thus the brain. Television shows and books detail people being hit on the head, the jaw, the face as if a little time spent being woozy, shaking your head, losing consciousness, is no biggie.
We most definitely do not love our brains.
It’s time we did.
The tweeters behind @TheCrashReel account told me that the campaign is still in the works. They have begun with a YouTube playlist as a resource while they connect with organizations. The Twitter handle “@TheCrashReel” comes from the 2013 movie The Crash Reel about US snowboarder Kevin Pearce crashing during training for the 2010 Vancouver Olympics and suffering a traumatic brain injury as a result. The director Lucy Walker followed him and his family as he began the grinding road of rehabilitation to reclaim his brain and his permanently altered life.
As is the case with football and hockey, this film and the #LoveYourBrain campaign that is coming out of it is grounded in sports. #LoveYourBrain is devoted to “spreading information and awareness of the risks of extreme sports and brain injuries/concussions.” (From The Crash Reel’s YouTube About page.) Yet it’s not sports but car crashes that are the bigger menace to our brains. According to the Canadian Institute for Health Information (PDF of their 31-page Analysis in Brief):
“Sports and recreational activities were the third leading cause of traumatic head injury admissions in Canada in 2003 – 2004.” (my emphasis)
Although 28% of head injuries in children that required hospital admission were from injuries due to sports and recreation, 39% were from car crashes, and 40% from falls. In adults, ages 20 to 60, the leading cause was car crashes. People older than 60 tended to get their head injuries from falling. We need to make the muscles, bones, and balance stronger in our older population!
But these statistics are for hospitalizations. What about concussions? The kind of brain injury that you don’t go to hospital for, maybe see your GP and go home and rest, whilst stupidly thinking, I’ll be better in a few weeks? In my admittedly brief search, I couldn’t find any. The Brain Injury Association of Canada (BIAC) writes:
“Canadian Motor Vehicle Traffic Collision Statistics for 2003 indicates that there were 222,260 victims. Detailed statistics on the number of neurological disease, disorders and injuries [include all those who suffered any visible injury or complained of pain following a road accident] are not readily available and requires more research. Being a new organization, we will work closely with provincial organizations, medical institutions and governments to collect data to be converted into reliable statistics for Canada in the future.”
But those stats that the BIAC are going to try and document would not include ones for sports and recreation or falls. According to the Brain Injury Association of Waterloo – Wellington, close to 4% of all Canadians are living with a brain injury. That is way too many Canadians. And 20% of sports-related injuries are from concussion. The Brain Injury Society of Toronto (BIST) also has a page of stats with links, one of the more concerning being that over half of the homeless population have a traumatic brain injury.
If you have the time to hunt, you’ll see that various organizations in different countries and regions, different health organizations, are all working independently of each other to gather statistics or report on what others wrote, to launch their own awareness campaigns, and to talk to the affected. BIST, the organization I belong to, hosts a brain injury awareness event every June at Nathan Phillips Square (Toronto City Hall), which I attended one year. But I did wonder how many people went home going, “hmmm…I need to think more about this topic, learn more, and change my attitude toward brain injury.”
“many countries need to develop surveillance systems and conduct epidemiologic studies to measure the impact of neurotrauma among their people to guide the development of more effective preventive methods”
And I’d add treatment methods.
Because of football in the US and hockey in Canada, concussion as a serious problem is starting to make headway into the minds of ordinary people who haven’t had a brain injury or don’t think much about the people they know who do, for let’s face it, how many of us with brain injury retain any sort of regular contact with people who knew us pre-injury after the first couple of years, the years I call the honeymoon period in my book Concussion Is Brain Injury? Not many. And when those people leave us, I bet it’s out of sight, out of mind for them when it comes to brain injury.
Only a societal shift and a sustained awareness campaign across the spectrum of regions and continents, like the drunk driving campaigns, will make the change we need to see.
Right now there are too many cooks boiling too many pots of campaigns. We need a concerted, co-ordinated effort by all involved. I like the #LoveYourBrain moniker as the name that could link all the campaigns. It’s one I can get behind.
I went to the BIST Brain Injury Awareness Celebration at Nathan Phillips Square in Toronto last Thursday, 17 June 2010, and it was a ton of fun, full of photographic opportunities, amazing artists to meet, clowns to laugh at and be interviewed by, a mesmerising aerial artist, and speakers who moved us. I felt inspired to create a video diary of what the Brain Injury Society of Toronto put on and to use Jann Arden’s Ode to a Friend to create a music mashup as the soundtrack.
I started by wanting to put together a video of my helicopter trip over the Kaskawulsh Glacier near Vulcan Mountain, the one I took when I was visiting the Yukon. But something wasn’t adding up, and then I realised it needed words. I found a poem from my poem-a-day challenge that fits with what these photos evoke in me, and I had to decide: text or spoken. Well, I was too tired and too impatient to figure out how to line up the spoken words with the right photos and have music too in MovieMaker, so I went with text. I’m familiar with working with text in a video anyway.