The long road back
A stroke takes away a writer’s words
Iwoke up to madness. I heard noises, but they didn’t make sense. Was I still travelling or was I at home? And where exactly was home?
I figured I better get up and shake the cobwebs out, but they wouldn’t shake. For starters, I couldn’t see clearly out of my right eye. It was like somebody had smeared Vaseline over it and my left eye was weakened by the extra workload.
And it got worse. You know how your body effortlessly does the routine things you need it to do? Things like sitting up and taking steps?
That wasn’t happening for me.
The last minutes of my old life ticked away early Monday morning, March 15, 2010. It was that groggy first work day following the switch to daylight time, when we’re robbed of an hour’s sleep.
It’s a tough day to remember, but an impossible one for me to forget.
The week leading up to my mental meltdown had been a whirl of plane travel and highway driving. It was late Friday evening before I rolled my car into my driveway in Sherwood Park.
I was still exhausted early Monday when my elder daughter, Kristina, 16 at the time, woke me up at about 6:30. Ignoring her, I put my head back down to catch some more Zs.
My head hitting the pillow was the last conscious moment of my old life.
I started consciously thinking about getting up. I fixed what vision I had on my right arm and tried to will it to lift me. I was rewarded with a slight twitch. It was like somebody else was in control, but they didn’t know what they were doing.
I kept staring and kept willing, harder and harder. Eventually I began to rise. There were two misfires halfway up that sent me crashing down. But finally I was sitting up on the bed.
Swinging my legs to the ground came with another surprise. My right side was numb from the tip of my toes to the top of my head. It was like that feeling you get when you sleep on something the wrong way, but without the tingly reawakening.
I used my left side to support and guide me and felt my way to the stairs dragging my unco-operative right side along. Two flights of stairs later, I felt my way to the shower, crashed in and tried to wash whatever this was away.
No dice. My wife Patricia was there when I stumbled out of the shower. I couldn’t see much, but the fear in her eyes was clear. The girls — Kristina and 13-year-old Anna — must have heard the crash and bang as I stumbled to the shower. I could sense they were scared and then I started to panic.
An ambulance was called. I kept asking for my shoes even though they were already on my feet. I was soon at the Grey Nuns Community Hospital, where the rest of the day was spent in what I guessed was the emergency ward and going back and forth between tests. It was a foggy haze that ended with a doctor whose name I couldn’t seem to remember delivering news that landed like a Mike Tyson shot to the stomach.
“Tim, you’ve had a stroke …”
He said a lot more, but he lost me at stroke. I was rolled up to the fifth-floor stroke ward and hooked up to machines where I spent a horrible night worrying about what Patricia would say to the girls.
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
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.
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.
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.
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 a D 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?
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 Glen rose geared to the stroked-out 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?
“Success may not look exactly like it did pre-stroke. Some people compare their new self to their old self. You can’t do that.”
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 SpeechLanguage 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.