Howard Engel

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.

dontevergiveup

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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Oliver Sacks – an inspiration to all, especially those of us with sizzled noggin!

I was sad – at first – when I saw the news Sunday night that Oliver Sacks had passed away. The writer and neurologist died following a battle with cancer at age 82.

But when my frown on this news turned quickly into a smile, I realized that this was a man who really lived and that no passing like his can spend much time on the gloom before being overwhelmed by the joy and healing he provided so, so many. Both through his words and science

I never got to meet Oliver Sacks. For that I’m sad. But I did correspond with him once through his assistant and a note that he sent me that I’ll always treasure. Not long after my stroke, as I was struggling to learn to read and write again, I stumbled on to a BBC piece featuring some of his cases. One was about the Canadian crime writer, Howard Engel, whose words had been taken from him following a stroke.

It was the first time I’d heard of anybody with stroke damage remotely like my own. And it was my first time seeing Oliver Sacks through the broader lenses of his amazing work.

I connected with Engle and Sacks within days of seeing the piece. And I started to devour their books with this new lens.

There are loads of docs out there and likely many more writers. I can’t think of many whose work has touched so many people so profoundly. One of Oliver Sacks’ careers would have been a huge blessing to the world. How awesome and inspiring it is that his life was so profound and unselfish serving as both a writer and a neurologist!

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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-