Let it bleed
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.
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.