Wednesday, 22 June 2011

My Brain AVM Story: The Stroke

I don’t remember waking up and thinking, “I can’t move my left side”. For a long time, I thought that the stroke occurred while I was on the operating table. It was a couple of years later before I realized that it actually took place several days later, and not in the area where the residual AVM was. There was a seizure involved (which I do remember), and then a gradual realization that there were parts of my body that just didn’t move right anymore.

A Brain That Doesn't Realize Parts of the Body are There

“Trying to lift a limb affected by stroke is like trying to lift a sleeping cat,” said one of my nurses. That meant nothing to me at the time because my family had only had dogs for pets and I’d never tried to lift a sleeping cat. (I have now, which gives me an even greater respect for the nurses who literally had to move my limbs for me to get me dressed and undressed each day). All I knew was that I felt like my left side was dead; my brain didn't realize that my left arm and leg were there.  I tried to think with all my might, to get more than a little bit of movement out of my left arm, leg, foot or hand, but none of them wanted to cooperate. My leg would only rise a couple of inches of inches off the bed, and stop. My foot pointed a little bit, but my toes wouldn’t wiggle. I couldn’t pick anything up; my fingers made a loose fist, but my thumb lay flush across my palm and refused to move. I came to a great appreciation very quickly of just how much I needed my thumb to do just about anything. However, I was determined that the stroke wasn't going to prevent me from returning to my summer job in July.

Dealing with the Stroke Brain

I don’t remember how I managed to eat, not being at all ambidextrous (well, truthfully, I hated the hospital food, and only ate and drank enough so that they’d keep a catheter out of me). I imagine that the things that I do now (open cracker packages with my teeth; saw my food with my knife; I now make a standard disclaimer to new friends that dining with me isn’t always a graceful affair) were already done for me. My signature became acceptable, but I eventually sent my looseleaf notebook and pens home with my father. I was not going to be doing any real writing for a while.

Physiotherapists would come and do basic range of motion exercises with me, and help to get in and out of a chair so that I could spend a couple of hours out of bed each day. Even doing that was exhausting. I spent my days mostly sleeping and reading the magazines that my father brought me (“There’s nothing worse than not having something to read,” he’d say to me as he’d deposit the latest issues of “People”, “US”, and “Entertainment Weekly” on my bedside table.)

He also brought me the latest “Harry Potter” book right after my stroke. There was no reason to believe that I couldn’t handle it. We’d established that the stroke hadn’t damaged the “machinery” in my head that would make life *really* difficult to live. I could swallow, so my food didn’t have to be pureed (and when I saw the pureed diet in the rehab hospitals, I thanked my lucky stars for that!) I could talk, and I didn’t appear to be experiencing deficits in my speech. My vision didn’t appear to be impaired, although I’d have to have further testing on my visual field done.

The Scare of My Life

However, when I started to read the “Harry Potter” book, I was stunned and terrified. I found that, while I had no problem reading and understanding the lines of text, I couldn’t link them together. I felt like each time my eyes dropped to the next line, I had skipped a line and jumped out of place in the paragraph. But there was no way to find the line that fit, because I *was* reading the line that was supposed to fit; my mind just didn’t recognize it.

My father was in the room with me. I started to cry. “I can’t read,” I said. “The lines don’t make sense.”

“What?” he said.

“This line doesn’t come after this one,” I said, pointing to a paragraph in the book. “My mind doesn’t understand it.”

I’m sure my father had no idea what I was trying to say, but he got a nurse in there and between the two of them they got me to accept that this could just be a temporary side effect of the surgery (which it was). I just had to be patient and take it easy and do the best that I could.

Which would become the theme of the next several years.

If there's anything truly fortunate about the way things went with my AVM, it's that I found out about it by having a small stroke that caused no damage. Yes, ultimately I had a larger stroke that caused significant damage; but if I hadn't had that smaller, warning stroke, the same thing (or worse) could have come from seemingly nowhere in a situation where other people might have been hurt (like, when I was driving a car or holding a baby). This way, I chose to go into surgery knowing that something like this could happen...and at least I won't have another stroke from an AVM. I rolled the dice on a surgery with risks...this is what I got. And all things considered, I came out pretty good. Plenty of people have come out of the same surgery in a lot worse shape.

So I try to remember to count my blessings. More on that later.


  1. hey! fellow AVM stroke survivor here. (lots more at just in case u didnt know).  Your story resonates so much with me...except I did not even know what an AVM was prior to my stroke, much less that I had one.  But I went through many of the same things you went through...except I was too scared to try to read for several months so Ill never know if I experienced the same reading problem you did.  Jill Taylor did experience that (she's the author of My Stroke of Insight,  Anyway...just dropping a line.  Andrei.

  2. Hi Andrei! Funnily enough, I was just looking at an update email from AVM Survivors (I do have a profile there) and thinking that I really do need to become more active on the site.  I haven't signed in for a while, but it seems from the update emails that I receive that the site is doing awesome work and helping many people. And I was just discussing "My Stroke of Insight" with a friend's on my "Must Read" list.

    Thank you for reading, and for the comment! I hope that you are doing well. I'll check into AVM Survivors this weekend.