Friday, July 09, 2021

what it's like to be brain-damaged

Dr. Jill Bolte-Taylor, a neuroscientist, gained fame for a TED Talk years ago in which she described the experience of having a stroke. It's a powerful and compelling lecture, and she came face to face with two sides of the consciousness residing in our heads: the logical/analytical side, and the wholistic/oceanic side.  It was a deep insight into the nature of the brain and mind. The experience of my own stroke was nowhere near that profound, but I thought it might be nice to try to convey what it feels like to live life with a wounded brain.

Let's start with the day of the stroke. At first, when I was trying to negotiate some stairs, I suddenly found myself collapsing forward and ending up in something like a toe-touching position, ass in the air, my hands on some steps. It was hard to right myself, and I was confused as to why. In that moment, I didn't even realize I was stroking out, so when I finally did manage to right myself, I simply continued on into work feeling dizzy (and still a bit confused), but thinking that the whatever-it-was would pass. That same day, I got visited by an executive from HR (British expat) who told me he was leaving the company in a few days to care for his aging father. I don't know how I got through that conversation, but Peter didn't ask me if I were OK or anything, so I must have passed for normal, being seated and all. So I guess my mental faculties were still fine at that point. I got through the rest of the day without any of my coworkers or my boss saying anything, and that's when I finally noticed that the symptoms had resolved into something clearer: weakness on my right side. This is about when I wrote my "am I having a stroke?" blog post. I still wasn't sure, though, and I made the very dangerous decision to sleep on the matter. If I woke up and things hadn't gotten better, I'd get a cab and go to the hospital, which is indeed what I ended up doing.

So here we are now. The stroke happened on or around May 14, and now it's July 9, nearly two months later. What's life like for this stroke victim?

Imagine having to walk through syrup. This is a feeling I deal with rather often: that everything has become just a little more difficult, that I have to push through something to get anything done. This feeling isn't with me all the time, but it's there much of the time. Now imagine that there's a light fog that sits between your perceptions and your mind's ability to process them. The fog isn't visual: you can see and hear and smell and taste and feel just fine. But it's in your brain, gumming up the works and making life harder. The fog creates a bit of a disconnect between you and reality. You've heard people in certain situations report that they felt as if they were standing outside their body and watching something happening to them, as if they themselves weren't experiencing it. My situation is a little bit like that, but it's not acute. Because that's the other thing: as I mentioned not long ago, something has changed in my personality, and I now find it almost impossible to hide strong emotions like humor and sadness. If I think something I'm reading or watching or saying is funny, I start laughing right away. If something is sad or mawkish or maudlin, my throat tightens, the corners of my mouth turn down, and I get ready to cry (I don't actually cry; I can control myself that much). You can hear the tremor in my voice at such moments. And it doesn't take much to set me off, either. As I think I noted before, my brother Sean says to just go with it: it's better to be in touch with your feelings, anyway. But there go my aspirations of becoming an actor.

So there's the syrup and the fog and the partial detachment and the emotions. Physically, I think I've been improving in some respects, but not in others. I can put on and take off my pants while standing, which is something I couldn't do during my first couple weeks out of the hospital; I had to sit on the edge of my bed. I'm generally fine showering, washing dishes, and cooking. I'm functional. But there's something off about my fine motor coordination, and it's most obvious when I'm typing. I have to look at the keyboard, now, and I can no longer type at 142 words per minute. I actually tried a typing test as a way to assess myself cognitively and physically while I was stroking out; on that day, I think my score was somewhere in the teens or twenties. I'm better now, but nowhere near 100%, and as I said, I have to look at the keyboard to make sure my fingers are hitting the right keys. Typos are now a fact of life; even as I'm typing at this moment, I'm making mistakes and having to go back and correct them.  There's definitely a brain/finger disconnect that I can't quite seem to overcome, and dealing with that is an exercise in patience because it's always tempting to become frustrated. Sometimes, I can achieve a state of "flow" and get through several sentences before making a boneheaded mistake, but for the most part, mistakes are the rule. I have a sad feeling that this is going to be the best I can manage for the rest of my life.

My drawing skills, such as they are, don't seem to have been affected. In terms of whole-body movement, I still have slight balance issues when negotiating stairs, and I don't think I'll ever burst into a sprint ever again unless I'm being chased by a bear or a mountain lion. I do want to try working out with a punching/kicking bag; I think that would be therapeutic in more ways than one. Despite the mental fog described earlier, my marbles are still in place, as I hope you can see from my writing. I can still put ideas together in coherent sentences with correct punctuation, so I've lost nothing in that area of my life. However, my French accent seems to have taken a hit: I talk more slowly in English, now, and French, while still easy enough to type in emails, has become harder to speak. So I've taken out an old French-language book about martial arts and am reading passages of it aloud to myself to practice enunciation. I need to do more of this, frankly; practice has been infrequent thus far.

The professionals say there's an initial three-month window right after a stroke during which, statistically speaking, most recovery occurs. I'm already halfway through that window, and I hope the recovery continues. I don't really like having an altered personality, nor do I like typing and speaking more slowly. If these things can somehow heal, if the brain's neuroplasticity can work around the dead tissue in my head, well, that'd be nice.



9 comments:

Horace Jeffery Hodges said...

Interesting to hear about your experience typing since your stroke. It reminds me of my own experience since Parkinson's. I was never good at typing. But I could type, fairly slowly, and with mistakes. What differs now is that I sometimes find myself sitting at the typewriter, trying to recall how to type. I even imagine that I must know precisely how hitting a key on the keyboard gives the correct letter on the screen. I sometimes think that I must be able to visualize this process for the process to work. I wonder how a fixed keyboard can give variable sequences of letters. I sometimes even have to remind myself that the screen is where I need to look to read what I've written. I have to ask myself, "Okay, where am I? No, the keyboard isn't the place. Maybe I should look up. Oh, yeah, there it is, the screen." The worst is when I am afraid to type. I recall how finding the right key can take so long. That causes anxiety, which increases my fear. I feel the unbearable weight of 'willlessness' - if that's a word. I mentally shorten the sentence, but that doesn't help. I must just sit very still and persuade myself that the process is not really so hard. If I can get past that first step, I can type again . . . badly.

Jeffery Hodges

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Kevin Kim said...

Jeff,

That is an extremely personal comment. Thank you for it. I haven't talked on my blog about your Parkinson's out of respect for your privacy, and I don't recall seeing you mentioning it on your blog, either, so I assumed the topic was verboten. Well, it's out now, for anyone who sees your comment here! Anyway, for what it's worth, I know you don't want any pity, so I won't give you any. I will, however, affirm my fellowship with you in the Fraternity of the Neurologically Stricken.

On a more serious note, I can't imagine the frustration that comes with wanting to express yourself but having to wrestle to do so. Things that used to come easily no longer do. I can relate to that.

I imagine you're on top of the latest research regarding Parkinson's. I came across something the other day about how the keto diet might actually be useful for Parkinson's patients. I wouldn't necessarily take such research as a guarantee of anything (keto was originally developed for epilepsy patients), but it could be promising. Something to look into, maybe.

John Mac said...

Thanks for sharing. I've seen stroke victims and the physical manifestations but hadn't ever considered the cognitive impacts. What a daily challenge that must be! And that's after a "mild" stroke, as lucky as that might seem, it still comes with a lot of adjustments to make in your daily routines. Here's hoping that over the next couple of months you see continued improvement. Good luck!

Charles said...

I know it's impossible to ever really get inside someone else's head, but I feel that this helped. For what it's worth, I think you--both of you--conveyed your experiences very well.

Horace Jeffery Hodges said...

I should add that what I described is not my everyday experience but more my experience when I'm tired and writing to meet a deadline.

Jeffery Hodges

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Daniel said...

Thank you for giving us a veritable phenomenological tour of what it's like to live post-stroke. The syrup, fog and heightened emotional response no doubt make life a great deal more difficult than it already was. I can only say how impressed we all are by your heroically planned and implemented recovery, supplemented with a complete dietary reversal and incredible amounts of exercise. Pretty certain your gift with words has not suffered at all (barring those few somewhat incoherent posts during the actual stroke). Here's hoping it'll be neuroplasticity for the (eventual) win!

Kevin Kim said...

Huh. I'll have to go back and see how incoherent I was. I don't recall writing incoherently, but maybe I did.

Anyway, thanks as always for reading.

Horace Jeffery Hodges said...

"Incoherent" cannot be the right word. You were in an altered state, but very coherent. You succeeded in bringing us readers into that state. Maybe that's what Daniel was referring to.

Anyway, I thought it was some of your best writing.

Jeffery Hodges

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Kevin Kim said...

Thanks, Jeff. I did go back to check whether I had written something nonsensical, and I didn't find anything.