This is part of a series that looks at extraordinary experiences in personal health. Share yours at email@example.com.
The typical signs of stroke – face drooping, inability to raise both arms, slurred or jumbled speech – they’re quite common, but not all strokes are like that. I didn’t have any of these signs.
I was in my office on a conference call, when I noticed these bands of light in the left side of my vision. Being a physician, I went through all the different possible causes, such as: Well, am I having a retinal detachment? (That’s when the layer of light-sensitive tissue separates from the inside of your eyeball.) But no, I had it in both eyes, so it wasn’t that. Well, maybe I’m having some kind of a migraine aura. I’d had migraines before, but always with a sensory aura where the upper-left quadrant of my face sort of goes numb before I get a headache. Maybe I’m just having a visual aura for the first time. But I also noticed the whole left side of my face was numb, and I thought, Maybe that’s just part of a different kind of migraine.
I was exhausted, so I went home and lay down on the couch. I got up for dinner and I had some difficulty swallowing, but other than that, I just thought, Hmm. That’s kind of funny. I was 58, and even with my family history – my dad had his first stroke at age 52, and his dad died at 49 of a heart attack – stroke and cardiovascular disease weren’t top of mind for me because I have other immune problems, as well as asthma, so I’d always thought it was my lungs that would do me in.
So I went to bed, and I woke up in the morning, and I realized, Oh. I’m walking funny. I could dress myself, but I had trouble using my left hand, so I just used my right. I looked at myself in the mirror and smiled and there were no signs of facial drooping, so that was fine.
I was the chief public health officer at the time, so I had a driver pick me up and I went in to work. The whole morning, I was trying different things, like I’d walk up a step and find I couldn’t step up with my left side. But I’m thinking, No, no. It can’t be a stroke. It can’t be.
I asked a colleague to check me out. Sure enough, he noticed signs of stroke, and I had my driver take me to the emergency room. It was pretty obvious I was weaker on the left side, and I was showing some short-term memory trouble. At the hospital, it was confirmed I’d had a small stroke. It’s like one of those puzzles, where it’s only when you look back at it after you’ve put it all together that you think, Oh. That should’ve been more obvious.
I didn’t have a clue what the challenges were going to be. So for me, getting the diagnosis was like, Okay. Well, it’ll be fine. A week or two and I’ll be back to my old self. But nope. It’s not so easy.
Over the next little while, I started finding more things wrong. I would read and realize I couldn’t remember what I’d read. My short-term memory was shot; my wife would say, “Well, you know, you’ve asked me that three times.”
I couldn’t turn around. It’s such a simple thing, but I really had to think about how to do it. My physiotherapist asked me to walk backward, and I was like, “Um. Uh …” I couldn’t. I couldn’t trust my left side. It was the weirdest sensation. It felt like my left side didn’t belong to me. I couldn’t trust it to go where I wanted it to go.
The stroke didn’t affect my speech, but it affected my ability to recall the names for lots of things. I could still have a conversation, but if somebody interrupted us, I’d have no clue what we were talking about. My neurologist said to think of it like your computer, where access to different sectors on your hard drive have been corrupted. The data’s out there, but you just can’t get to it. So you either have to create new files or create new pathways to get to those old files. And that’s exactly what it felt like – like there were these drawers that couldn’t be opened. I had to relearn the names of my grandchildren. I had to relearn the names of all kinds of things. I could see these things in front of me, but there were just no names for them.
Before, I hardly ever had to take notes because I would remember details from meetings weeks ago. I thrived on working 14 to 16 hours a day for weeks on end, tackling new issues every 15, 20 minutes. Now, thinking was suddenly hard work. After a year of therapy and rehab, I realized I could never go back to doing what I did, so I stepped down.
This April, I had a second stroke. I was at home in bed and suddenly I just felt really weird. It didn’t feel like the first time. For lack of a better description, it was just this dissociative sense of not really being connected. That stroke slowed down my processing again and it affected my strength and co-ordination. So I started up physio again.
Even now, it’s really hard for people to tell I’ve had a stroke. I can go all day putzing in the garden or doing familiar things, but after a couple hours in a meeting where you’re trying to pay attention to multiple issues and people and things, my brain just goes on vacation. It’s like those Charlie Brown movies where the teacher’s talking and all the kids hear is “Wah-wah-wah.” That’s probably as good a way to describe it as any.
But for me, as a physician who’s just always been curious, it’s been absolutely fascinating. I mean, I wouldn’t wish it on anybody. But I’ve learned so much about the complexity of the brain, and also about the capacity and the potential for recovery.
David Butler-Jones, 61, was Canada’s first chief public health officer til 2013. He is a member of the board of directors of the Heart and Stroke Foundation.
Read more stories in this series here.
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