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Wow, thanks!

It may not be Thanksgiving, but with Canada Day and Independence Day this past week and with summer in full swing, it’s pretty hard not to be thinking about what a fella is thankful for.

There’s life itself, great parents, an amazing wife and daughters who’ve managed not to inherit my faults and have taken in all the good stuff – and there’s plenty of that — their mom was able to pass on to them.

There are friends, travel, work, volunteering and seemingly random experiences that have enriched me and challenged my thinking.

There’s also a great country and province to call home, a place where the son of a bricklayer and secretary gets the same breaks and has the same opportunities as anybody else.

Of course, there’s also the shite. But there’s even stuff to be thankful for there.

Post stroke Tim looks at a stunning mountain range, a perfectly maintained ’64 Porsche and hears the subtleties of a Jimi Hendrix guitar solo differently than pre stroke Tim did. The moment isn’t to be taken lightly; I drink it in and savor the taste. I try to lock it in my memory banks as brain food to draw on later. This sounds a little dorky when I play it back out loud with my robo reader.

But it is what it is. And it’s true.

Post-stroke, I write every day, I put out this blog, I’m sprucing up a book and I may even have a bead on a publisher. Pre-stroke Tim mostly just thought about writing.

I’m also thankful for timing and science.

If I’d stroked out when Canada was born – 148 years ago – I’d have been done for. The damage would have been even worse and the rehab non-existent.  I can’t bear to think about what life would have been like if I’d had a family. I’d have been useless to them and myself.

Even if I’d stroked out 10 or 20 years ago, I’m not so sure that I’d be working and living a life I’d call living.  There has been loads of improvement in stroke awareness and treatment. I’m sure that I benefited from this knowledge and thank God for that.

Had I stroked out today in another part of the world, I fear that my brain buzz would have had more dire consequences.  Would I have gotten the treatment I needed when I needed it? Time is money when it comes to this stuff. The more a brain fries, the more damage is done. And that makes it much harder to put humpty dumpty back together again.

I sometimes wonder if there’s another guy about my age who stroked out at the same time that I did in the same part of the brain, the only difference being that he lived in a part of the globe without the access to care that I had. What’s that guy’s life like today?

Yikes.

I’m also thankful that there’s hope today for the hell and the fear that people are facing right this second. I’m thankful that there are folks – like you and me — that can lend a hand. And that there’s hope for a lot of great moments to come.

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Dummy! Or, stupid is as stupid does

Brain buzz or no brain buzz, I can be a first class fool. And, sadly, I can’t blame it on sizzling my melon when I stroked out.

Last week I was cut off while driving.

“Idiot!” I shouted to myself in the car as I hammered on the horn. “Where do these people learn to drive?”

A day or two later, I cut somebody off. I figured it out when their horn sounded an attack. They went with a long first trumpet then followed with a series of short bursts. It sounded to me like; “Idiot! Where did you learn to drive?”

“Jerk,” I thought. “He must have been speeding. Where’d she come from, anyway? I bet they changed lanes. Where do these people learn to drive?”

It was only later that I pondered my reactions. What did I mean when I thought “these people?” I didn’t see the driver in either case. Man, woman, young, old, race, I had no clue. Did I have an unfortunate stereotype of what a bad driver looks like? My pondering made me uncomfortable, so I shelved it.

But I couldn’t forget what shelf it was in and I had to open it up again when I went out for a walk with my wife a little while later. Patricia is convalescing from a major, painful and scary surgery. Among other things, it’s made it tough for her to walk. And speed, right now, is not an option. But she has to walk as part of the rehab.

Some of this walking has been outdoors, but shopping malls have a nice even track with no worry of rain or wind, so we’ve made use of them.  The down side of malls is that they can be very busy. And choppers and staff are often intensely focused, determined and aggressive as they get from their Point A to Point B. I’ve learned they’re not super keen about slowing down to get around slow pokes convalescing from major surgery.

Now, the surgery was such that I can’t have my bride getting checked by aggressive mall types.  So, I’ve developed a few blocking techniques. Turns out that those years spent playing football weren’t a waste of time even if there was no room in the pros for a 5’10’ slow corner linebacker and special teams dude. I know how to block and, if necessary, how to tackle. Maybe not to the level needed in the NFL or CFL, but I do fine in a mall.

However, needing to run interference to protect Patricia from contact while in a shopping mall put me in an ugly game day state of mine. And I’d become tense and angry that people were putting her in harm’s way.

“Can’t people see that you’re not ship shape?” I steamed. “Jerks. Where did these people learn to drive, I mean, walk through a mall?”

Then Patricia said something I hadn’t considered. Something that somebody with my history of stroke and being the one time victim of stereotypes should have had top of mind.

“You don’t know what’s going on with them, Tim, just like they don’t seem to know what’s going on with us,” she said. “Maybe their boss just screamed at them, or fired them. Maybe their child or their mom is in the hospital.”

In Patricia’s job she drives a lot from client to client and walks through harried stores. She always has stories about bizarre road mayhem.  So if she can throw out a little empathy I suppose I can. And should.

She made me think about a story I heard Stephen Covey tell years ago when I went to an event he spoke at in Edmonton. Covey was a thought provoking speaker and the author of many books including The Seven Habits of Highly Effective People.

On the day I heard him, Covey told of being on a New York City subway on a weekend morning when a man walked on with a pile of rambunctious kids. To hear Covey tell it, they were running amuck on the train, yelling, knocking in to people while the dad did nothing.

Covey eventfully became too angry and frustrated to stay silent and asked the dad why he didn’t do something about his kids.

The dad, a stunned look on his face, took a peek at his marauding brood and said something like; “Ya, I guess I should. We’ve come from the hospital where there mother just died. I guess I just don’t know what to say or do.”

Covey told us that he immediately made the shift from anger to empathy. A few words changed everything. The circumstance made the facts seem different. Nothing practically had changed. Yet everything had changed.

We can wait for these shifts of points of view to happen and maybe they will or maybe they won’t. If Covey hadn’t said anything, he’d have left the train, angry about the many and disgusted with his children.  But, if as my wife suggests, we try to shift our point of view on our own, well, we’ll be in a better place. That’s good for our own minds and souls. And we may even be able to lend a hand to somebody else from time to time.

Go figure.

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Brainy laughs or, Keep chuckling to prevent madness

This week’s offering was born in a public men’s room at a highway diner outside of Red Deer, Alberta.

It was a Sunday evening and my wife, Patricia, and I were on our way back to Sherwood Park from a couple of days in Banff, where we’d gone to soak in the energy of the Rocky Mountains and to steel ourselves for some upcoming tricky business.

I spotted an odd sign the moment I stepped in to the men’s. It was hand written on white computer paper. It seemed very important, as if I’d better read it before doing anything else. So I put my stroke damaged free style reading skills to work to make out what it said. At turtle speed, I worked through the words. Then I shook my head and gave it a second scan, not sure that I’d gotten it right the first time.

But I had.

The sign said: As a courtesy to the next customer, please flush the toilet.

Now, I thought, why was that sign necessary? Then, before taking another step I had a second thought. If the sign was necessary, maybe I don’t want to be in here.

If I read this pre-stroke, I’d likely have paid it no attention.

But there’s something about putting extra effort into reading that makes a fella put a little more thought into the words read. It’s like investing the added time into making sense of the words has the effect of making you ponder those words more deeply once they’re worked through.

Over the past five years post having my reading skills buzzed by a stroke, public reading has led to some interesting times. Most signs and posters aren’t super text heavy. But one often encounters them on the move, so giving them a full read requires extra effort. And sometimes when I give this scan short shrift, skipping over parts or making assumptions, it’s let to some regrettable moments.

Sign art can ramp up my reading misfires, as well. A symbol or drawing that clearly means one thing to its creator is often clear as mud to me.

Recently out for dinner during a trip in Arizona I encountered unclear restroom door signage. Not an M and a W. Not a man picture and a woman picture. So, figuring I had a 50-50 chance of guessing right, I opened Door Number One.  The shrieks told me that I’d guessed wrong.

“Sorry,” I said, spinning around to door number two.

Earlier, I’d made a similar mistake in another eatery with creative restroom signage. This time I just wanted to wash my hands before dinner and had walked straight to a sink of the seemingly empty room. As I went to dry my hands I noticed a terrible thing.

No urinals.

Then I noticed that one of the stalls was in use. I had to get out of there pronto.  I started stepping toward the door, but I was too late. A woman opened the door before I reached it and gave me a confused look.

“You’re in the right place,” I told her. “I’m not.”

For me, when it comes to signage, globally recognized symbols are manna from heaven. Creativity and details are hell.  This is especially true while driving.

Traditional road signs are easy. Nice, simple symbols pretty much the same throughout Canada, the US and everywhere else I travel.  But street names, especially long one – Sir Winston Churchill Avenue – are trouble for me, often causing a missed turn or two if I don’t have a co-pilot.

That can make you feel like a dunce.

It’s the same but different for others who’ve suffered strokes and other attacks on their brains. Those whose speech is stilted often tell me they’re treated as stupid. People here how slow their words are, not the quality of what they say and they make judgments. They respond to them like they’re talking to a child. I don’t think that slow teachery talk is appreciated by kids and it’s much less so with adults struggling to get their words out.

Abnormal gaits to a person’s walking, wheel chairs and other ‘abnormalities’ seem to also have this ‘let’s treat them as though they’re stupid’ effect.

It’s very, very frustrating.  But a little humility can actually be a good thing.

It can make you just pissed off enough to try harder. It can remind you that you have to try harder if you’re going to heal to your maximum capacity and/or make up for the scars you’re stuck with.  It can even make you better than you would have been without the scars. Sometimes the undamaged waste their gifts. But for those of us who’ve had them ripped away, we’re often able to make better use of what we’re left with.

By the way, this is the first blog I’ve posted without having a trusted second set of eyes or two read through. It may show. But I wanted to test my stroke mind’s free bird, technology aided editing skills. Hapfulle their arnoot to maany typooos, ah, I mean, hopefully there aren’t too many typos.

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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.

Confessions of a brained blogger

brain5

Shortly after tapping out last week’s blog offering, I started to work on the next piece. I poured out my heart and my soul. It was great stuff. At least it was good stuff. But nobody but me will ever know for sure.

That’s because it’s gone.

Early Sunday morning after I warmed up my aging laptop to start putting the finishing touches on, my words were gone. They’d vanished into thin air.

A few colorful word combinations were followed by another search. But there was nothing.

This happened to me once way back in the ‘90s when I was an Edmonton Sun reporter. I was about 15 minutes from deadline. And I was working on the lead story. A few very choice words were hurled at me. Sun editors back then weren’t the warm and fuzzy nurturing types.

I spent five minutes trying to retrieve and coax my piece from wherever it lay trapped in the beat up work processor. Then I spent the next nine re-writing it from scratch. I’m pretty sure that the final offering was better than the first.

Harkening back to that experience, I first decided to re-trace my original blog steps. A few minutes into this, I decided to change gears and address the elephant at the laptop.

Being a rookie brain buzzed blogger is coming with some unique problems. Problems which I’ve looked for some help with, but mostly which I’ve been fumbling and stumbling along with on my own, trying to find solutions.

The tools I have are great. My reading device is a literary life saver. But navigating the WordPress site when I’m trying to build my blog isn’t smooth sailing for me. Trying to figure out the Tweeting and re-Tweeting world leaves me feeling a bit like a student taking university classes in a foreign tongue. And I confess that I haven’t perfected the nuances of using Facebook to its maximum potential.  Nowhere close, actually.

It’s not the tools, it’s me. With my turtle slow reading speed and the ‘new’ way my memory works post stroke, I’m not the model blog student. It’s kinda like being back in junior high school for me, actually.

So I’m swallowing my pride and turning to all of you readers for your help. My pride is swallowed.

Please share with me your ideas of making the blog look and navigate better. Please give me the skinning on getting this blog out beyond my network so that I can share this brain food was many, many others.

I’m working on a piece about concussions in NHL players and other athletes. I’ve got a piece coming on brain games to increase mental power. I want to make sure that I don’t fail potential readers by being a remedial blogger.

Oh, by the way, you’ll see on the site a couple of nods for some great brain books. One by Howard Engel, the other by Oliver Sacks. I plan to continue to share books and movies that do a mind good. Please take a look and share any ideas that you have on other brain books or movies.

So, last week, I shared the last of the Edmonton Journal piece I wrote last year. For the final wrap on this, here’s the side bar that ran with the piece.

Warning signs of stroke

You don’t fight back from the devastation of a stroke without a lot of people in your corner.

For Seefeldt, it started with his family recognizing the signs of a stroke and calling an ambulance.

Faster treatment means a better chance of recovery. The longer you go untreated the more your brain is scrambled and the tougher the road back.

There are five main signs of a stroke:

Weakness – sudden loss of strength or sudden numbness in the face or leg

Trouble speaking

Vision problems

Headaches;

Dizziness Seefeldt had all five, but any of these may be worth a call to 911.

There are risk factors to be aware of, like high blood pressure and cholesterol, obesity, diabetes, smoking and stress, according to the website for the Heart & Stroke foundation. Sometimes strokes happen for reasons that aren’t fully understood.

Let it bleed

dontevergiveup

This was a week of bad news.

I can’t get into what it was exactly. But it was that gut-wrenching stuff that first has you slip into denial, then into bargaining with higher powers, then finally, grudgingly and painfully into acceptance.

And, hopefully, into the kind of acceptance that comes with action. What I can do in this case can only help emotionally, it can’t specifically impact things one way or another, but still…

I want to write about the bad news. I did, actually, and then destroyed it because I can’t put it out there without betraying a confidence.

My mind is a fog and I can’t focus on my original plan for this week’s blog. Wasn’t it Ernest Hemmingway who wrote something like; “Writing is easy, you just sit down at the typewriter and bleed”?

So, I’ll follow Papa’s lead, and the Rolling Stone’s, too, and Let it Bleed.

When my mind was made mush five years ago by the stroke, it was devastating and almost too much to comprehend. Especially given that I was trying to comprehend using a faulty melon. But at least I could do something about it. Being faced now with circumstances that I can’t take direct action on is having a sizzling impact on my noggin.

It would be fascinating if it wasn’t so frustrating.

I often think about my stroke in then and now terms. I couldn’t read then but I can read now (albeit much slower and usually with the aid of a reading device). My memory was a sieve then, but it’s normal now. (Practically speaking this is true but not technically). I was an emotional glue bag then, I’m normal now. (What’s normal?).

The fact is that this news I’m dealing with has made me get real on these “facts” and others.

I’ve recently written about my turtle reading speed, my memory tricks and the fact that the new Tim is a bit, ‘er, emotional.

What I haven’t always confronted directly or honestly with myself is that I’m constantly rebooting my brain to function differently without the aid of the sizzled parts. I have to work harder to do this. Work harder, coax it along, show it love and patience and do mental calisthenics and tricks.

The good news is that this is possible. The bad news is that it’s a constant effort and, under stress, the tricks can fail.

I’ve been exposed by this in recent days. It seems, with my mind heady with the new stuff that ‘the recent news’ has weighed in with, I’ve been slipping up. Simple words aren’t coming to me. Complex ones are miles away. I’m forgetting to remember. I’m having brain drain doing the most basic stuff. And that emotional glue bag thing is getting glouier and baggier.

Depressing. Until you take it for what it is. An athlete who’s lost a step can still be a star, he or she’s just got to learn how to protect the weakness and get everything out of their strengths. Economy of effort.

It’s frustrating. It’s angering. But even anger can be our friend. Like the drawing at the top of this blog says, don’t ever give up. And sometimes not giving up takes getting a little pissed off.

That’s that for now. Please see below for the final installment of the feature story I wrote for the Edmonton Journal on my stroke.

Tim

 

Part 4

Former journalist Tim Seefeldt tells the story of his amazing journey to relearn the basics 3 Rs

By Tim Seefeldt, Edmonton Journal

June 13, 2014

I got a handle on the alphabet with the help of flash cards designed for children. The cards would show me a b,d and aD and I’d try to parrot back what letters they stood for. Then it was on to flash cards with entire words on them. From there it was cards with questions.

I also had packs of children’s “First Words” cards. They’d have simple pictures with the corresponding name written beneath. So, a picture of a book would have the boldly coloured letters b-o-o-k beneath it. And who could forget the page after page of pictures of forks, pens and dogs? be-It turns out that I could. Initially it was tough to make the connections. But little by little, my brain seemed to kick back into gear and this stuff started to click.

I’d work through these with Heather at our sessions. Patricia would run through them with me several times a day every day. And I’d work on it the best I could by myself.

At times it was humiliating to be staring at worksheets designed for children and know that I was struggling to do would many kids could manage with ease.

Heather motivated me by getting me to write my story. When this started – about a month after my stroke – the writing was very rough. I couldn’t read it moments after I’d written it. But I felt like I was working on a real project, proving fate wrong.

As the weeks went by, the homework got more complex. By summer I’d moved on to exercises that required me to fill in missing words in short sentences. Was the right word hurry or worry? And then there were the “builds.” These would start with a couple of sentences that would build the story to a short paragraph then a longer one, exercising my reading ability and memory.

To spice things up, I had pages and pages of simple math sheets. Stuff like: You have three quarters and your pop cost you 54 cents. How much money do you have left? To be in my mid-40s and unable to easily make simple change was depressing. But I learned to cherish every simple improvement.

Heather picked up the pace. She added newspapers designed for new Canadians to my rehab. I’d practise reading and be tested on comprehension. Eventually, I started taking on sections from books and doing verbal story reports.

By August, things had improved enough to allow me to start working part time. I worked for a consulting company that used social science to solve problems. My job was to bring in clients and I had to solve the complex problem of how to succinctly explain to them what we did.

We identified a reading device I was able to load on my computer to help me read. Without this, a return to work would have been impossible.

An average person reads at between 150 and 190 words per minute. I was at 20 in the early days of rehab and improved to 51. I still use the reading device today.

As well as things were going, there were a few shots of ugly reality to come. In the fall I was going to face a comprehensive series of tests at the Glenrose Rehabilitation Hospital over the better part of a day. These were supposed to show how well my brain was rebooting. It would isolate specific regions to determine how they performed on their own.

The pace of my rehab continued to pick up. I joined a quirky reading group at the Glenrose geared to the strokedout and brain injured. At my first meeting, I met a guy in his early 50s who inspired me. His summaries were a bit wordy but I was impressed with his reading speed. If he could do this, so could I, right? During a coffee break I chatted with him.

“You’re doing great,” I said. “Thanks,” he said. “And it’s only been six years since I had my stroke.”

That was another shot to the gut. Would I still be here in six years? Would my parttime work fizzle and leave me unemployed and on financial assistance my remaining days? What would the test at the Glenrose tell me? Was I just fooling myself?

I failed the test. With the different parts of my brain tested in isolation, I couldn’t stand up to the pressure. But the neuropsychologist who oversaw the test told me a secret.

While parts of my brain in isolation may not be up to snuff, she said it appeared that I’d learned some tricks over the previous months that could override the deficits. Notetaking was a big help and something that came naturally from my journalism days. She said just the act of taking notes helped memory.

“Who knows how much you’ll be capable of?” she said. “Keep trying and don’t let this test define you.”

It’s been four years and I’ve spent every day trying to prove that test wrong. Most days I succeed.

Sure, the scars are still there. I’m reminded of them every time I punch in the wrong numbers on an ATM with a long frustrated line behind me.

On the surface, I live a pretty average life now. And to me that’s a huge sign of success.

I’m among more than 315,000 Canadians who are living with mild, moderate or severe disabilities due to stroke.

And what’s so frustrating to so many survivors: half of the people who have had strokes are never able to work again. This includes people in their 20s, 30s, 40s and 50s. I’ve seen this first-hand through volunteer work with the Stroke Recovery Association and its program with Alberta Health Services that sees stroke survivors visit new victims in hospitals.

I’m in a new job and for the most part folks wouldn’t notice I’m a stroke victim. Patricia and my girls treat me like a husband and dad. That is, they get angry at me or laugh with me, they don’t pity me and walk on eggshells around me. I even got my driver’s licence back.

Patricia also played the role of head coach and motivator while my daughters – Kristina and Anna – were my inspiration. This is more than a nice to have. Research shows that support from family and friends is a powerful tool in recovery.

So is amazing rehab. I had this in spades. Every stroke is different, so the job of rehabilitation is a real head game. It’s too complex for a cookie-cutter approach.

“The treatment plan is different for everybody,” said Heather Stamler, the Speech-Language Pathologist who led my rehabilitation. “It’s not like one mode of therapy fits everybody. We interpret what we discover and we go from there with the input of the patient.”

Stamler said they try to work with the patient’s goals top of mind.

“In your case you were young and you wanted to get back to work. You were eager and motivated,” she told me. “You were instrumental in working on a treatment plan with us. So we made it very specific to you getting back to the kind of work that you’d been doing.”

The wrinkle was that as somebody who relied heavily on reading and writing at work, the stroke hit me in about the worse place possible.

“It was going to be very difficult for you to get back to be doing those things,” said Stamler.

So she and her colleagues studied the kind of work I did, talked to me about the job and came up with a plan that would give me the best shot at getting back to it.

Beyond the practical role of rehabilitation, Stamler noted the importance of being aware of the emotional toll a stroke puts on the victim and the people in their lives. This needs to be dealt with compassionately as the treatment moves forward.

And as the stats above suggest sometimes the stroke victim’s goals won’t line up with reality.

“Success may not look exactly like it did pre-stroke,” she said. “Some people compare their new self to their old self. You can’t do that.”

That you’re reading this proves there’s at least the hope of a road back from stroke. I’ve tapped out a book as well, something that I couldn’t even manage before my brain was fried. Whether or not I ever get a publisher to bite on the book, the words are there in black and white.

Proof that you can put Humpty Dumpty back together again.

 

Comfort rots the brain

 

Comfort kills.

It rots, it mutes, it makes us benign.

Kevin Spaceys’ character Roger ‘Verbal’ Kint nailed is in the great movie, The Usual Suspects. He said:

“The greatest trick the devil ever pulled was convincing the world he didn’t exist.”

When we think there’s no devil, there’s nothing to keep us sharp. We get soft. Or as Pink Floyd perfectly put it, we become comfortably numb.

Rage against the devils that mute us, I say!

It took me stroking out and having to reboot my brain to get hip to this trick. It doesn’t have to go so far.

I’m convinced that we’ve become wired today to make us think that the early struggles and challenges of life are supposed to lead us to a land of milk and honey where we can finally just sit back. So we get to a point where we can do our job in our sleep and go on autopilot to handle the other things in our lives.

That’s when we’ve made it, baby.

Except that we haven’t.

Because — I’m convinced of this — that’s where the rust sets in. And before you know it, one day melts into the next. We’re not bending our brains. We’re not stimulating our souls. We’re at risk of becoming like a character in another amazing Brit band’s song, Synchronicity II by The Police: “He walks unhindered through the picket lines today. He doesn’t think to wonder why.”

Think! Wonder! Our brains literally feed off of this.

So do we seek high stress jobs and drama in our personal lives to stay sharp? Been there, done that. It’s the other extreme. Maybe it’s another trick of that damn devil. In my case, it’s likely a key driver in my path to the stroke ward.

There’s a middle way that’s not benign.

You’ve got a great job that you’ve been doing for a long time that’s keeping the family in groceries? That’s great. Maybe volunteer on weekends at an inner city homeless shelter? You’ll get yourself some stimulation there. Guaranteed.

You’re kinda shy? Did somebody say ‘open mike night at the local comedy club?” There’s nothing like the sound of crickets after you’ve delivered your best gag to get those juices flowing!

Angry about that good for nothing politician who keeps talking without doing? Don’t be a do-nothing yourself. Volunteer on the campaign of that layabout’s competition during the next election.

Don’t be afraid of being afraid. If you’re a right brain gal, find left brain stuff to do. Hey left brain guy, take a walk on the right side.

There’s also stuff that you can do without leaving the comfort of your hacienda. There are loads of brain games and programs online and at your local book store. Read books and magazines on subjects you don’t normally follow.

I knew a guy in the advertising game once. He said some of his colleagues would go to different kinds of houses of faith to challenge and stimulate their noodles – a synagogue one week, an evangelical church the next, then a mosque. I was once at a Hindu wedding and, wow, was that a feast for my mind.

If folks run to lose weight and build heart health why is it so crazy to exercise your brain? It’s not. It’s madness not to.

Here’s a bit more from my newspaper piece:

Part three:

Former journalist Tim Seefeldt tells the story of his amazing journey to relearn the basics 3 Rs

By Tim Seefeldt, Edmonton Journal

June 13, 2014

Everything we do, everything we are is connected to our brain. Its four quadrants control various functions. So where the stroke hits determines what type of damage it does. And the longer it goes on, the worse that can be.

Simply put, a stroke is a sudden loss of brain function. It’s caused by the interruption of blood flow to the brain or the rupture of blood vessels to the brain. While this is happening, the brain is being damaged.

There are more than 50,000 strokes per year in Canada – one every 10 minutes. It’s our third leading cause of death and our leading cause of adult neurological disability and hospitalization.          

You don’t fix a broken brain.

The parts that are sizzled are done for. It becomes a matter of rewiring the brain to the degree that that’s possible. For me, the vision problem and body control weren’t the big issues. I was able to get those working for me again pretty quickly, though I’m still numb on the right side.

The real jolt was to the three Rs: reading, writing and arithmetic. Oh, I almost forgot: my memory was sizzled, too.

Technically, I had a large left posterior cerebral artery territory infarct. That meant that the back left side of my brain was damaged. I literally needed to relearn my ABCs and simple math. Confounding the task was that I couldn’t draw on important bits of the past and I struggled to keep hold on what was happening in the present.

Damage to the left brain is felt on the right side. That’s why it was my right eye and side that let me down the morning of my stroke.

Put it all together, I’d fail a general test of my intellectual abilities. I wasn’t capable of meaningful work and it wasn’t clear that I ever would be.

I had enough brainpower to realize this could add up to financial ruin, a downgraded life and a very raw deal for my girls and Patricia. I had lots of encouragement, but no promises.

I started my career as a newspaper reporter, spending 11 years in journalism. Writing was the only thing that my grade school teachers thought that I had some knack for.

I saw reporting as a path to writing books. But as the years passed, I kept putting it off. It was always in the back of my mind.

Now the back of my mind was broken.

I spent a week and a half on the stroke ward at the Grey Nuns, with a weekend pass to break things up. It was depressing and frightening. The only plus was meeting the folks who worked there who could deal with the horror of stroke without giving in to the depressing vibe.

Dr. What’s His Name was actually neurologist Mikael Muratoglu. He did a lot for me, nothing more important than trying to make it clear to my strokey mind that attitude would be as important as science in getting better.

Heather Stamler is the speech language pathologist who took on the task of teaching me to read and write again.

Twice a week, Patricia drove me to the Nuns for my sessions with Heather. (It turns out that they take away your driver’s licence when you’ve had a stroke.) Heather gave me daily homework to noodle over between sessions.

I now have new respect for people taking on English as a second language. Why does a capital D face one way while a lowercase d swings the other? Why is I before E except after C? Except when it isn’t? There were so many contradictions that I’d given no thought to in the days when thoughts were easy.

If my life then had been a movie, this is where the Rocky theme music would have kicked in. It felt like the training sessions before an improbable shot against the heavyweight boxing champion of the world. If I thought about it too much, it seemed impossible. Don’t think, I told myself; just do.

Heady stuff

StrokeTools

 

The response to Blog # 1 blew my mind.

I knew that there was loads of interest in all things brain. But I didn’t dream that my first effort would get to so many readers or that the feedback would be so heady.

And after connecting with many of you, I realize that I have to do a bit more stage setting before going any further.

In the first helping of Brain Food I gave a sample of what the stroke fried in my mind. I want to be certain that I didn’t gloss over this. When I wrote that I lost the ability to read and write, I meant that I really lost it. That bit of brain was dead to me. It wasn’t a matter of snapping out of it. It meant firing up new brain bits and starting from scratch. Like a kid. But like a kid with a fried melon that may not be up to the task.

I’m not saying this to make you feel sorry for me. I just want to be crystal clear how devastating, damaging and life changing this mind sizzle was.

In the hospital, when I finally accepted that I’d had a stroke – and that took a while — this is how a poster on the wall of my hospital room looked to me: Eslmlsfslsmflsflsflosf CCCDOJIFOSFSJ.

After weeks re-learning the ABCs, I moved on to getting my head around small words and connecting them to what they stood for. The pic above is a snapshot of some of the tools I used for this. B—o—o—k spells book, read one flash card designed for preschoolers and adapted for my use. Above the letters, a drawing of a book painted the picture for me. The rehab folks at the Grey Nuns Hospital worked through this with me twice a week. My wife, Patricia, coached me on this a few times every day along with flash cards she picked up at a dollar store.

When I was ready we found a reading device called a WordQ which we installed on my computer. It would read the words on my screen for me while I tried to follow along. I still use it because while I now can read and write, I read at about 51 words per minute. The average person reads at somewhere between 150 and 190 words per minute.

The recorder in the picture was with me whenever I went for a walk, which I did a couple of times every day. I was to use it to capture my thoughts and, later, to record attempts at summarizing short stories that I’d turtle read. Much of the time I would forget how to start the recorder. And when I did manage the ‘on’ setting, I’d often forget to turn it off.

That’s part of my story. I’ve met dozens and dozens of folks fighting battles with their brains with their own stories that have inspired, horrified and often helped shape the new me.

Like a kind, lovely lady who started swearing like a sailor after her stroke and never was able to work again due to the lasting damage it left her with. And there was a guy just a bit older than me who stroked out seven years prior to my brain buzz. I met him at a quirky book club for the brain injured and stroke survivors.  After all that time, he was still battling with his mind to hold thoughts together long enough to hold even a simple job.

I’ve met with and tried in vain to connect with stroke ‘survivors’ who were trapped inside themselves, unable to communicate with the outside world. I’ve spent time with people with perfect thoughts they could no longer easily communicate because their speech and mobility were stroke ravaged.

And yet there is hope. I’m proof of that as are loads of other folks who’ve been able to reboot and retrain their brains and once again start to live meaningful, productive lives.

That’s part of my passion for Brain Food. The other part is this. All of the knowledge that’s helping the brain injured and damaged is there for everyone. To help folks brush the dust off, to get more out of what they have for longer. This is very cool.

Oh by the way…that lady who had to give up her career? Her name is Wendy Pangrass and she’s now leading a group that’s doing amazing work with stroke victims, helping them deal with the emotional shock of what they’re going throw and support them in their long term recovery.

Below is along piece of the feature story I wrote for the Edmonton Journal last June. BTW, I’m still waiting to hear from agents or publishers about my book. Seriously, feel free to call 🙂
Part Two:
Former journalist Tim Seefeldt tells the story of his amazing journey to relearn the basics 3 Rs
By Tim Seefeldt, Edmonton Journal
June 13, 2014

The next day I was disconnected from the machines. Patricia was back and I was trying to get a grip on how to work my unco-operative limbs. There were more tests. People – I had no idea who they were – dropped by to talk to me, but whatever I was saying to them didn’t seem to make sense.

How could I have had a stroke? From what I could see, most of my ward mates needed walkers. This is what a stroke looked like, right? Many couldn’t talk or if they did it was with stilted speech. This is what a stroke sounded like, I was sure of that.

I was clearly confused and my memory was messed up, but I figured there could be lots of reasons for that. Near as I could remember, I was only 45.

When Patricia left that night, I decided to try to fix the things that had confused doctor What’s His Name into thinking that I’d stroked out. Then I figured he’d let me go home.

Memory first. I thought of the people I knew. Patricia, Kristina, Anna. Lee and Sue – my parents, deceased but still solidly in my mind. Rudy and Marlene – my inlaws. I eventually got my sister’s name – Shelly.

But I drew a blank from there.

I decided to look around my room for clues. There were a lot of posters on the walls. Maybe they’d stir some memories? The first one looked strange.

Something like: Eslmlsfslsmflsflsflosf CCCDOJIDFOSFSJ What language was that? I looked at another poster. Then another. They were all in this strange text.

There was nothing wrong with the posters. There was something wrong with me. I couldn’t read.

That doctor was right. I’d had a stroke.

OK, that will do for now. Until next week…