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Sometimes breaking vows is a good thing. I think.

I vowed that I wouldn’t blog again until I’d finished my book.

Well, I haven’t quite finished that humdinger yet, so it seems the fact that you’re reading this is pretty clear evidence that I’m breaking that vow.

For new readers or those who’ve forgotten what I’m on about, I’m penning the story of the stroke that sizzled my brain’s ability to read and write, made a sieve of my memory and took my average-ish math skills to a new low. That’s among other important, life altering things. Generally speaking, I was not capable of doing meaningful work or meaningful just about anything.

But I battled back and — despite some pretty deep scars — I’ve made quite a remarkable recovery.  Even if I do say so myself.

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What gnaws at me, though, is I promised myself if I ever got my words back, I wouldn’t let them go to waste. I’d write the books that I’d been putting off all my life, either too afraid of failure or too lazy pre-stroke to complete.

But even for an ex newspaper reporter well accustomed to pumping out copy every day, writing a book is quite a grind. Especially, it seems, when virtually every page conjures up painful memories. I’ve had to put together a process that works for me and my turtle slow, technology aided reading style. And that’s taken some time to figure out and try to perfect.

At the same time, I’ve had to learn to deal with the gut ripping pain that reliving the memories of my brain battle conjures up. Hemmingway, I believe, said that writing is easy – just sit down at the type writer and bleed. OK. But sometimes I need a tourniquet when I’m penning this brain battle stuff. It’s good not to forget, but it’s also hell to remember.

Sadly, what I’ve noticed is that dealing with the hurt sometimes – often, actually – has led me down the path of avoidance. Back to that old nemesis of wasted time.

There are loads of powerful quotes that drive home the importance of spending one’s time well. Stuff like:

Time is really the only capital that any human being has, and the only thing he can’t afford to lose. ~Thomas Edison.

An ounce of gold will not buy an inch of time. ~Chinese Proverb.

Until you value yourself, you will not value your time. Until you value your time, you will not do anything with it. ~M. Scott Peck.

Those quotes have a sting to ‘em for me. Especially that last one. But what really stings is that I’ve been battling this wasted time demon going way back to high school. That’s when my amazing English teacher John Rollins gave me a graduation present in the form of a short letter. The gist of his epistle was that hours turn to days, days to weeks and weeks to years in the blink of an eye. He warned that I wouldn’t want to blink too many times and find that my aspirations were untried with the last few minutes on the clock of life ticking away.

It struck me as I’ve been working on the book in recent days that time can be pretty cruel, even when it’s not wasted. Things – life itself – can end pretty abruptly. Even with my best efforts I may never get to see my book completed or published whether or not it finds its way to bookshelves and e-readers.

I’m not meaning to be a downer, but it’s true.

Stieg Larsson’s Millennium Trilogy novels are worldwide best sellers that have been turned into movies. One was a Hollywood block buster. But he died of a heart attack at age 50 before seeing the success that was coming for his stories.

Pondering some recent events, it struck me that I’ve been wasting the gift of blogging. Its instant nature means that no matter what, I can get at least some of my story out there every week. If all goes well, a book, maybe books and who know what else will follow. But nothing can stop the blog. Nothing can stop it but me, that is.

So Brain Food is back, not instead of my book and not as a drain on the process of writing it.  It’s back as a piece of the pie. And if I lose my way again?

Well, if I start feeling lazy, there is Simon Fitzmaurice to think about. If he can’t inspire effort and dogged determination, there is no hope of inspiration. In 2008 the multi award winning writer and film director was diagnosed with ALS, or Lou Gehrig’s disease, as it is also known.

He was just 34 with a young family.

The determined Irishman had two more children following his diagnosis and kept on writing. He uses a wheelchair and is attached to a ventilator that enables him to breath. He can’t speak and he’s immobile. But he continues to write and communicate using his eyes via an eye-gaze computer.

I can’t imagine how tough that must be. It seems that it would be furiously frustrating and that it would be simple – understandable, even – to give up. But Simon doesn’t seem to think that way. In fact, he wrote and directed his first feature length film, My Name is Emily. And it wasn’t just good for a guy with disabilities. It won a wack of awards last year.

Amazing. Inspiriting!

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Shifting gears

I had a great time the last two weeks in Toronto and Montreal.

I was 100 per cent out of work mode. I was enjoying two great cities. And best of all, I was hanging out with Kristina and Patricia. I also managed to find time to meet up with a couple of buddies I hadn’t seen in far too long.

One convo with one of those pals got me to thinking. And the result of that brain work is this — it’s time to shift gears with the blog thing.

Over a pint, my buddy and I talked about the ways we’ve worked together in the past to help folks draw out the best thinking of people facing difficult problems and challenges. Over a second pint, we talked about using this blog to do that again.

So for the coming months at least, Brainfood is going to get more focused. I’m going to use it to tap into my network, and with your help, readers’ communities to use our collective minds to solve challenges and tackle problems of the mind.

My buddy is going to help.

You see, I’ve learned in past lives and through recovering from the stroke thing that the answers to many of the problems and questions that befuddle us are out there, well understood by other folks sometimes in other places. Sometimes it’s straight forward. Sometimes there are context issues. Other times some creativity is required.

But we don’t know what we don’t know. And what we don’t know can’t help us.

A story or two…

Back when I was at the stage in my stroke recovery that saw my comprehension improve to normal levels I was still suffering with speed. I could only read at 50 words per minute. Average readers fly along at about 200.

I had a program to deal with this problem on my computer. But when it came to books, newspapers and magazines, I was out of luck. One fix was to go to the library and pick up a book and then look for another copy on tape. Then I’d listen to some actor read the words as I followed along with the book. It was clunky.

It was tough to read for pleasure or learning using the thespian aided method.

Then while doing some research, I connected with a speech language pathologist from Chicago. At the end of our interview, I kibitzed about my book reading problem.

She asked: “Don’t you have Amazon Kindle in Canada?”

“Indeed we do,” I said.

“Then get yourself one. It has a text to speech program.”

Indeed it does. Who knew? Lots of people, just not – until that day – anybody that I knew.

I’ve been reading books, magazines and newspapers with my Kindle ever since.

I’d also been frustrated that I’d never been able to talk to anybody else facing my kind of brain buzz from a stroke. None of the strokies I’d met had lost their ability to read and write, so none had had to relearn their ABCs. Then one day I had the TV on to BBC while I was doing some work and a Toronto writer named Howard Engel was featured. He’d had a stroke. While it wasn’t like mine, it had caused him to lose his words, too. And he’d battled back and kept writing.

Even though our issues were different, it was inspiring to hear about a guy like this who I could relate to.

I looked Mr. Engel up in the phone book and was able to chat with him a few times. He was a real gentleman to me. And a great inspiration.

It would be fantastic if more of these kinds of connections and the fixes to problems and inspiration they bring could happen by design rather than by chance. That’s what I’d like to help spark with this blog.

That’s what I’m going to do, that is. With your help.

We’re going to identify some of the problems that are driving us crazy. And we’re going to use some techniques and this blog to find the answers. We’ll spark conversations that will help us act as one big brain to fix problems. Small problems. Complex ones. Frustrating conundrums. Whatever.

We’ll pick them off  a few at a time.

But, like I said, I’ll need your help.

Shortly I’ll post a blog that will flesh out more details. But basically, I need you to come forward with some initial problems. Then I need you to help draw in your networks – docs, therapists, patients, families and friends, support works of all kinds, researchers – folks with any interest and experience with the brain work that’s going on out there.

From all over the globe.

I’m looking forward to this!

Stay tuned.

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Riding the rails and drinking in TO and Montreal

Smart as I am, when the signs on the stores we passed on our VIA Rail train were no longer written in English, I figured out they were in French. And that meant that we’d crossed the border between Ontario and Quebec.

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Seeing Quebec roll by from the ground for the first time was tres bien. And entering Montreal on the train route was a complete different experience than driving in from Pierre Trudeau airport. Very cool.

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We walk out of the VIA station, roller suitcase in tow just after noon. We found a patio on Phillips Square — Le Grand Comptoir — and fortified ourselves for the afternoon. We had a great, simple lunch under perfect patio weather, just shy of 30 C. The square out front and the slow traffic creeping past us provided perfect views for taking in the city. The only downside were the Canadian, German and Brit business dudes sitting next to us. They were all trying to impress each other with their biz smarts and used F bombs as verbs, nouns, adjectives and just about everything else. I’m not against a good Fbomb. I just appreciate variety and creativity in cursing. And I try to avoid the nastiest words in all-age public settings.

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These boys were more amusing than disturbing though.

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After eating, we headed towards Patricia and Kristina’s friend, Francois’s place. It was a great stroll, even with the bag in tow. He lives near Ste Catherines’. Which we strolled along much of the way. We also had a coffee on Ste Denis. It was great to sit there and restore my memories of Montreal.

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We met Francois after he was done work and went for dinner at Le Steak House Du Village — a great choice for us Albertans. After a long meal on the patio combined with great people watching and conversation, I now count Francois as a friend.

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We had a fabulous time in Montreal — great dinners, amazing walks, incredible sites. The pictures attached tell the story best. Old Montreal, Crescent Street, up and down Ste. Catherine’s street. Wow.

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We took the train back to Toronto on Saturday. Dinner in Leslieville and then Saturday afternoon we watched the Blue Jays beat Minnesota, staying on top of the American League East pennant race. We watched the sun go down at Yonge and Dundas square.

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Monday we paid a visit to BMV books and then strolled over to China Town and Kensington. I still can’t visit Kensington Market without humming the King of Kensington theme song to myself.

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All of this brain food from TO and Montreal is nicely feeding my writing. I’m making good progress on the fiction stuff.

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Strokversary Six

Six years ago today started with a sizzle.

Sadly, it was my brain that was frying. It’s the day I stroked out.

Few days go by without some reminder of my March Madness. It began months of craziness, confusion and fear. It really, really sucked.

dontevergiveup

But on this first Monday of Day Light Savings, I drink a solo toast, say thanks to whoever will listen and vow not to waste the time I now have with a well functioning brain. Well functioning by my standards, at least.

I’m often haunted by terrible memories when I think of stroking out. The confusion and fear of the first days was actually a pleasure compared to the fright that followed my earliest recovery. That’s when I was together enough to realize just how messed up I really was.

And that my shaky melon could keep me from meaningful work, make me forever dependent and cause me to fail my girls and my wife.  Anna and Kristina were 13 and 16 when my brian buzzed. I felt they still needed me. And I wasn’t keen on the raw deal I was leaving my wife with, either.

Add guilt over what I was doing to my girls and Patricia to all of the other emotions.

But those bad memories aside, I’m also jazzed when I think of getting through those darkest months. That – with loads of help – I could get back to a meaningful life. That, while still unpublished, I’m writing the books I never penned pre-stroke. Every great experience feels like a bonus. Something I snatched back from the devil stroke.

So, with that, I’m going to make my toast, have my drink and put a little more into one of the books I hope will be on bookshelf soonish.

Cheers.

 

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Technology & research are key helpings of brain food

I always talk, think and write about being back to normal. After a stroke, that’s what a fella wants. Normal = good. You want to blend in. At least for me, there’s still a fear that somebody will notice a slight hesitation in my speech or catch me struggling to retrieve a memory. If a regular Joe or Jane forgets a name it’s just a sign of a busy life. If someone whose brain has been sizzled does the same, could it be a sign that they aren’t firing on all cylinders? Are they damaged goods? Are they capable? Do they require pity? Arggg! I imagine it’s much the same for folks who’ve suffered other assaults on their minds. The fact is though, that you’re never the same after your brain has been blitzkrieged. The difference can be in how you feel, how you function or both. It doesn’t mean that you’re not capable. But it might mean that you need some help or tools to do what you used to do. Imagine if a mind like Stephen Hawkings was trapped inside his disability? What if he was born in a time and place where sharing his mind with the world wasn’t possible? Or if his part of the world had been cut off from the possibilities that helped set his brain free? I fear that that could be happening today. I’m actually pretty sure that it is. I’m certainly not in Hawking’s league. But whatever I have to offer would be largely muted without the help of technology. As I’ve written before, even the healed Tim Seefeldt’s reading speed is just over 50 words per minute. An average person reads at between 150 and 190 words per minute. You can’t do the work I’ve done through my career without being able to read and write. And, you sure can’t write without being able to read. Or to find a cheat. It doesn’t take a mind like Hawking’s to figure out that I’d be up the creek without a little help. More than a little. My equalizer is software originally designed for kids with learning disabilities called WordQ. WordQ literally allows me to keep up to the rest of you in reading the reams of material that comes across my computer each day. It allows me to edit my own writing to make sure that it’s up to snuff. I use it to edit and review everything I spit out, with the exception of very short emails. Bottom line is, without it, I don’t make a living the way I’ve been trained to make a living and I’m in a spot of bother when it comes to paying the bills. And, there’s no book (BTW, agents/publishers I’m still waiting to hear from you!) and there’s no blog. Beyond the practical, a large part of me would be gone without being able to write. Technology is a game changer for many of us in regular day to day life. And it can be especially critical for those of us who’ve suffered a few bumps along the way.  It’s not just high tech tools that can help heal damage and improve brain function for the unbroken, either. I’d also like to be a clearing house of ideas for stuff that’s working for folks whether it’s some form of physical exercise or meditation.  Personally, I wouldn’t have gotten anywhere without the spiritual piece. And today, a big part of my day to day is yoga. My downward facing dog looks more like a rat, but it’s helped me a lot, from shoulders to toes and between the ears. The thing is, there’s so much out there and things change so quickly that it’s virtually impossible to keep up to speed without help. And to separate the good, the bad and the ugly. So, in that spirit, here are a few things readers have mentioned. What do you think? Some American readers have noted the work done by Bioness Inc. Their electrical stimulation devices are being used to help people with arm and leg mobility issues. Their stuff is aimed at helping folks with foot drop or hand paralysis as a result of stroke, multiple sclerosis, traumatic brain injury, incomplete spinal cord injury or cerebral palsy. I’d love to hear from more folks who’ve used this and to see if there are other tools targeting these issues. I’ve also heard from readers who’ve read about potential benefits of hyperbaric oxygen therapy for those suffering ischaemic strokes. This one’s right out of left field for me. Are there any professional readers who can shed some light? Let’s try to work as a clearing house of sorts for some of the stuff that’s out there for stroke survivors and those suffering other brain trauma. Also for brain health. The way I understand it, it’s never too late to start trying to make the ole ticker work better. As well, the thinking that the clock was ticking after a stroke and that you could only make improvements within a short window of time is now, I believe, considered bunk. I’ll be waiting to hear from you. Meantime, I’m also waiting to hear from a concussion expert. I’m expecting some pretty interesting stuff to share with you on this front soon. -30-

Brain health clearing house

It’s been a couple of weeks since my last blog, but I’m back with a different state of mind.

Some travel set me behind. Then, interviews I was planning for a few posts on concussions were delayed. I didn’t want to just tell my story all of the time. I felt I’d hit a wall. And it was compounded by that personal issue I wrote about a few blogs back.

Then I got an email from fellow ex-reporter, Ron, that set my mind right.

Ron’s wife had a stroke 18 months ago. He’s by her side at their home just outside of Charlotte, North Carolina. Ron read about my story while doing some research on the National Stroke Association’s website (http://www.stroke.org/) where I’d posted a piece on their ‘faces of stroke’ page.  He tracked me down.  Reporters, even us ex-reporters, are good at this stuff.  Now two ex-newspaper guys — one from the South Eastern US and one from Western Canada – were connected.

Reporters — again, even us ex-reporters — are also good at asking questions. And in his emails to me, Ron asked a lot of good questions about life after stroke and support, tools and the like that are out there for recovery. He made some excellent points, like the ‘facts’ on the time after stroke that a person can still make gains seems to be greater than the experts used to think.

I realized from his questions that I’d forgotten one important thing about my recovery. As much as we now know about stroke, we’re still at the early stages of understanding the brain. New ideas are being floated every day. And advances and aids for stroke victims – and those suffering other brain conditions and injuries – are being made and discovered all of the time. And it’s happening all around the world. The point is, if you suffer a stroke or a brain injury in Vancouver or Miami or anywhere in between, all of the brain power you’ll need to help you isn’t sitting in a neat package in one convenient spot. You’ve got to do some digging.

As I’ve written, I had amazing care in Edmonton. And still, I learned about the reading feature in the Amazon Kindle through a speech language pathologist I connected with in Chicago. In our conversation, I told her how I was getting books from the library, then finding the same book on CD. I’d play the CD while following the words in the book. As I’ve said in earlier blogs, I can ‘read’ along with words being read out loud at normal speed, but I slow down dramatically when the recorded voice is shut off. Letter combinations don’t immediately appear to me as they do to you.  But they do when I hear the word along with seeing it. Weird, I know. At first I used this technique to speed up my reading. I seem to have hit a wall with speed, so now I need help just to keep up with the rest of you and not spend a frustrating month reading a short book.

The Chicago speech language pathologist asked me why I didn’t just get a Kindle, which has a feature where a computerized voice reads out loud, allowing me to follow. I’d not heard of this before. What a breakthrough that was for me.

I also craved having someone like me to confab with who understood exactly what I was going through with my lost words. Nobody I met or heard about had my reading issues. Then, by chance, I spotted a documentary featuring Oliver Sacks, the UK born, American based writer/neurologist who suffers a unique brain issue himself. The special talked about a Canadian novelist who had a stroke and lost the ability to read. His circumstances were different, but still. I tracked Howard Engel down and had some great, helpful and inspiring telephone conversations with him.

These were watershed moments for me. Colossal breakthroughs, huge inspiration.

Ron reminded me that I can use this blog to help spark some breakthroughs for others who’ve suffered stroke and brain injuries. To provide a voice for those who’ve come up with devices, tools and techniques to help with brain function and improvement. Whether it’s help for those of us who’ve been buzzed or those trying to fight off decay.

So, please, reach out to me with what you know and what you have. Share research you’re working on or have heard/read about.  I’ll share them in this blog. I’ll dig into them and do some old fashioned reporting on them.  I’ll spiderwep from your ideas and tips and dig up more exciting and helpful stuff.

Ron’s already started me with some great ideas you’ll read about soon.

Thanks, Ron!

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Tricky brain

A brain under extreme pressure is a tricky thing.

In my experience, it does one of three things.

  • It shuts down completely, leaving the man or woman it serves unable to function or at the very least, it badly cripples how they function, or;
  • The screws tighten, increasing pressure, pumping up stress and making it run rougher than the ’74 Dodge Duster that I drove in grade 11 , or;
  • It makes a Rocky Balboa type 15th round comeback.

But without a Hollywood scriptwriter pulling the strings, how do you end up like Rocky, bloodied, bruised but victorious?

I’ve thought a lot about the role stress may have played on my 2010 stroke. I have no family history of stroke and had no known risk factors. Yet, my brain didn’t seem to care about this when it started to fry early on the morning of March 10 five years ago.  I’ve come to the conclusion that I’m a stress junkie. I feel like I have the most success when I’m under the most personal pressure. I even think I kinda like the buzz I get from stress. And I don’t think that’s a good thing.

But I’m not sure that it’s entirely bad, either.

Perhaps it’s one of those things that can be friend or foe, depending on how it’s used?

How many times are we able to up our game when we’re under the gun? Stress may have helped zonk my melon, but I think that it may also have helped me recover.

Stroked out and facing a life without words, meaningful work and threatened with not being able to support my family emotionally or financially – that was pretty good motivation to do everything I could to claw back. It was also pretty stressful. And all through my professional career I’ve been drawn to the stressful stuff. In a weird way, I’ve found the pressure of stress comforting.  But have I hurt myself seeking out stress, or even creating stress that didn’t need to be there?

It’s cool to be able to step up under pressure. But are there some folks and organizations that thrive too much on this and who do their brain’s harm by being adrenalin junkies?

The Calgary Flames got me wondering about this.

If you’re a hockey fan you’ll know that the Flames made an unexpected resurgence this season and at the time of this writing were up in their National Hockey League playoff series against the Vancouver Canucks. The Flames have some odd qualities to their game this year. Both exciting and frustrating is their ability to come back from behind. During many games and in their fight to clinch a playoff spot, which took until the second last game of the season, they were fighting back against the odds. It makes great copy for sports writers and causes grey hairs for Flames’ management.

I find it fascinating to watch the Flames continue to snatch victory from the jaws of defeat. I actually seem to prefer it to watching them get a lead and keep it. I love seeing them as underdogs clawing back all of the time.

A little background is probably required here. I’m born and raised in Calgary and believe in sports loyalty. As such, while living in the Edmonton area since my mid 20s, I’ve had a number of sports related ‘moments’ where folks in the Alberta capital didn’t appreciate my loyalty. There were a few sucker punches thrown at me while wearing a Calgary Stampeders jersey at Edmonton’s Commonwealth Stadium during CFL football games back in the ‘90s.

And in 1989 when the Flames were drinking from the Stanley Cup after being crowned NHL Champions, for the first – and so far – only time, I was having a few problems with members of the Edmonton Police Service who didn’t seem to be Flames fans.

So there’s a pretty deep connection with me and the southern Alberta NHLers.

The cardiac kid thing makes for exciting games and movies. And who knows how far the boys in red can take it in the playoffs this year? But does there come a point where living on the edge and all the stress associated with it is too much?

In sports, I’m not sure. Maybe the Flames can go all the way. If they do, it’s sure to be with a number of stressful moments and come-from-behind wins. But at least professional athletes have the offseason to recover. And hefty pay cheques to help them unwind in style.

But what does too much stress make of those who live their lives that way all year round? Are some of us inclined to shape our lives this way? And for those of us who do this, does something happen to us, to our brains, when we’re not under stress? Do we need it like a junkie needs his fix? And what really is too much stress? Another thing, what’s so called good stress? And what’s good about it?

I don’t have any answers here. But I’d love to hear from those of you who do. Theories would be interesting, too.

Really, please connect. You’ll stress me out if you don’t :-).

Oh, BTW, back to sports, I’m lining up some interviews with experts and survivors of concussions for some upcoming pieces. Stay tuned.