The long road back

A stroke takes away a writer’s words

Edmonton Journal - - FRONT PAGE - Tim Seefeldt

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.”

HEATHER STAM­LER

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.

JOHN LU­CAS/ED­MON­TON JOUR­NAL

Tim Seefeldt at home with his wife Pa­tri­cia Raidt and daugh­ters Anna, left, and Kristina in Sher­wood Park.

SUP­PLIED

The brain’s four quad­rants con­trol var­i­ous body func­tions, so the lo­ca­tion of the stroke de­ter­mines what kind of dam­age is done. The blue area on the scan above is where Tim Seefeldt’s brain suf­fered in­jury.

Bruce Ed­wards/Ed­mon­ton Jour­nal

Tim Seefeldt had a stroke at age 45 that “siz­zled” his mem­ory and took away his lit­er­acy and nu­mer­acy. Af­ter four years of hard work and re­ha­bil­i­ta­tion, he is happy to say he is liv­ing an al­most nor­mal life.

SUP­PLIED

A work­sheet used by stroke vic­tim Tim Seefeldt dur­ing re­ha­bil­i­ta­tion to learn how to read and write again.

Newspapers in English

Newspapers from Canada

© PressReader. All rights reserved.