I was actually planning to write this post, my annual “anniversary of my brain surgery” post, right when I was supposed to this year – May 29. But then Joe Scarborough pissed me off and I got distracted. So my post about how it feels to be heading into my 15th year as a stroke survivor is a little late.
I know that there are people who started reading this blog and following me on Twitter because I said originally that it was going to be a blog about my stroke experience. I wonder sometimes if they think, “But she never talks about her stroke…?” Truthfully, I don’t really think about it all that much anymore. It flashes through my head when I’m trying to do something like open a jar, or move something with one arm/hand that requires two for good reason (I recently killed a printer this way, discovering the hard way that printers don’t like being dropped from even very small heights.)
But I don’t even really think of myself as a stroke survivor anymore. I’m just me. I had a stroke. I live with the way that it changed me, and life goes on. The experience put me further along a path on which I was already, because I’d already been volunteering in the disability sector when I had the stroke. But I don’t want what I’ve survived to be what I focus on for the rest of my life. Maybe that’s why, for the last couple of years, the anniversary of my stroke (or my rebirthday, as one of the online support communities to which I belong calls it, but I’m not really crazy about that terminology…nothing about me died about that day except for some neural pathways) has blown right by me.
But here’s the “State of the Union” at we head into my 15th year as a stroke survivor:
- I still have very little use of my left hand, but really just because my thumb doesn’t move. Other than that, my hand has low tone, is generally quite relaxed (lies relatively flat, doesn’t sit curled up into a fist), but still has very basic range of motion. I can’t flex my wrist. If I use my other hand to wrap weak hand around a car door handle, I can open it, but eventually my thumb will move away from a grasp position to lie flush against my palm, and grasping will become very difficult. Getting my hand to do much of anything for very long is like trying to coax my tw0-year-old niece into doing something she doesn’t want to – I may have some success initially, but sheer will just isn’t enough. It means that I do very unglamourous-looking things like open chip bags with my teeth, and when I’m out eating with people for the first time I give my standard warning that while I try to make it as presentable as possible, sometimes it’s just – not. But, on the other hand (ha! I made a pun!), I make one-handed living look quite natural, to the point where an acquaintance didn’t realize that I couldn’t use my left hand until I recently pointed it out to him.
- My left arm is still weak, but has good range of motion. I can use it to anchor things when I’m trying to perform tasks, and it’s strong enough that, if necessary, I can carry something in the crook of my elbow if I bring my arm tight against my body.
- I can perform most of the tasks that I need to do on a daily (and sometimes not-so-daily) basis with one hand. This has included (because necessity is the mother of invention and I’m quite stubborn), getting a cat into a cat carrier. I am still learning to cook, with the help of a very kind and patient friend – this is coming along slowly.
- I can walk up to 2 kilometres without a break. Walking that distance takes forty-five minutes to an hour. I could probably go further. I can support my full weight on my weak leg for very short periods and I can do very, very small hops, supported, on it. I’m starting to practice going down the stairs leg-by-leg instead of bringing one leg down a step and then bringing the other to meet it.
- They’ve finally found a drug cocktail that will completely control my seizures, and I’m over two years totally seizure free. I even have my learner’s permit. I’m not driving, though. I need an adapted wheel, and for that I need a car on which to put the adapted wheel…and right now that’s just not in the cards.
- I still have no sensation in the top of my head around the brain surgery scar, but that’s to be expected, I think. I think that the sensation on my left side is pretty good, but I thought it was pretty good when I broke my left little finger a couple of years ago and didn’t realize it, so I hesitate to speak authoritatively on that.
- I still lose my words or mix them up especially if I’m tired or if I’m trying to get a lot of thoughts out quickly.
- I may have mild narcolepsy. This, as far as I can tell, has nothing to do with the stroke. I’ve always had sleep issues, and had some investigation into them even before my stroke. I decided that it was time to do so again when I started falling asleep at my desk chair a few months ago and not realizing it until I’d woken up. I fell out of my chair one of those times. I’ve got enough scrambled in my head that I don’t need to risk whacking it off the floor and knocking anything else loose, so this sleep investigation appears to be the next medical chapter.
- With the hired nerd job and my freelancing work, I’m back to working full-time – more, most weeks. It’s tiring, and I often crash for a day on the weekends.
It’s not perfect. Some days it’s very frustrating – not because I can’t get done what I need to get done (because I really can, for the most part…and I have a bunch of people who are more than willing to help with the things with which I do need help, when that’s necessary), but because of the (mainly attitudinal) barriers that make life challenging for most people with disabilities. I’m very mobile, but physical barriers (particularly poor snow ice and removal on sidewalks, stairs and ramps) is still a danger for me. I’m still not always the greatest at asking for help, or accepting it when it’s offered…but I work on it.
I work on it. Isn’t that all any of us can do?
Considering that the doctors in the first rehabilitation hospital in which I spent time didn’t think that I’d get enough arm function back to really do much with my life again, things are going okay. As I’ve told people many times, lots of people have come out of the same surgery that I had with far more health issues than I did – and I had the benefit of great physiotherapy, and lots of it.
I also had (still have) wonderfully supportive family and friends, some of whom I met through writing this blog.
So there are many more positives than negatives, overall. And I look forward to telling you all about them again on May 29th next year.