Brain tumors suck. Hi, I'm Patrick btw. This is my cancer blog. My "normal" stuff is over here.
When my surgeon explained to me what the implications of my craniotomy would be, he mentioned to my drug-filled brain that he needed to go into an area on my left side of the brain that is concerned with motor skills. He therefore expected me to have a right-sided hemiparesis afterwards, i.e. a weakness that would still allow me to move my right side of the body, but only with reduced strength. He also assured me that this would subside rather quickly, as my right side of the brain would fill in for whatever the left side lost. Brains are awesome, aren’t they?
I didn’t see any other choices than to trust him, so I agreed to the surgery. When I woke up in the IC unit, I wasn’t really able to move my right leg or arm, as expected. As I was generally very weak, I didn’t care too much at this point in time. I was just glad that I could wiggle my toes and fingers. It reassured me that I could still feel my limbs and they were not totally lost to me. I think I was also able to lift my leg about 1cm in the air for a very short time, which was already more than anyone expected.
This still meant that for the first couple of days, I couldn’t really move in any way without help. Having control over only one side of your body just doesn’t cut it if you want to get anything done. So for some days after IC, it was all sponge baths and no real food for me. My brain was still all mushy from the surgery though, so even with a working right side, it would’ve been hard to get anything done.
After a few days, my head cleared up a little and I started to use the toilet and shower again. No, of course not alone. I had to be wheeled in by a nurse, who stayed until I was finished on the toilet and helped me shower, sitting on a plastic seat (me, not the nurse). They always had to make sure I didn’t just fall over to the right, as I did not have any feeling of balance yet. One time, I even scared the hell out of everyone by tipping over from the toilet seat. I was doing good on my own the last days, so they let me have some privacy by allowing me to close the door and pull the string for flashing the alarm light, telling them I was finished. The toilet paper was on the right side though, and while I was reaching for it with my left hand, I suddenly realized I couldn’t balance my body any longer. I must’ve looked really funny with this “dammit!” look on my face, slowly tilting over to the right. I crashed to the floor and everybody came rushing in, getting me up on the seat again. Luckily nothing was hurt, except my pride.
Over the time, I regained more and more control over my limbs again. It was a really strange feeling, because I literally had to mentally shout at my right hand “Hey you, hand! Grab that thing there! There you go, good job.” The only advantage for me was that I’m ambidextrous, with a slight preference for my left side. But did I mention already that my left arm was still in a plastic cast, because I had fissures in some of my left wrist’s bones from a snowboarding accident that wasn’t fully healed yet? No? Ah well, yes, that further complicated things for me.
I started to see a physical therapist, who did exercises with me to strengthen the muscles and regain more control over my limbs. After a while, I was able to sit up on my own again, although I was still tilting to the right. I learned to eat with fork and knife again, butchering my food with a right hand that didn’t really know what to do.
After a while, I got sick of being wheeled to the shower, so they brought me a kind of walking frame. In no time, I was running down the hospital floors. Literally, because at the beginning, I put too much weight to the front, so my legs had to run after the rest of my body. After this, I learned how to walk on crutches, and then I walked with someone holding on to my right side, stabilizing me so I couldn’t fall. At the end of my ten-day stay at the hospital, I proudly walked out of the building without any help, unsteady but with determination.
The first thing that happened to me at home was to get the worst case of sore muscles I had in my whole life. I guess my muscles were not used to all the moving I did at home and didn’t do at the hospital. I even burned my back with a hot-water bag, trying to ease the pain in my back muscles. Yes, I literally exchanged the pain of sore muscles against the pain of huge blisters on my back. That’s how much it hurt.
Before the whole brain tumor thing happened, at Christmas 2010, I got the PS3 game “Heavy Rain” in the PlayStation Move Edition. I didn’t get around to playing it yet, so I started playing it with my right hand, although normally, I would’ve used the left hand. This helped me get better coordination, although it made me suck at the game.
So Patrick, you may ask, that’s a very moving story (pun not intended), but why is the title of your blog post mentioning the loss of muscle memory? Well, After I regained basic coordination skills, I realized that my muscle memory for a lot of things was gone. I first felt it when I used my laptop again while staying at the hospital. My touch typing was not working as before, but worse, I didn’t know how to type some of my passwords. Being an IT security guy, my most critical passwords are long and complicated and not written down anywhere, leading to me remembering them mostly by muscle memory. I had to partially guess my own passwords, trying to remember the movement my fingers normally made on the keyboard. Luckily, I was successful with all of them in the end.
My handwriting also didn’t look like mine any longer. Yes, I write with my right hand, although I do most things with my left hand. So back home, I started to write letters to my wife every day, to regain my (physical) writing skills.
I’ve also been training ballroom dancing for quite some time, participating in tournaments, as you can see in the photo for this blog post. Even before I fell sick, we (as in, my dancing partner and I) didn’t train as much as we used to when we were both still studying, when we had the time to train about three to sometimes four times a week. At some point after my surgery, we started to try and exercise at least once a week again. I think dancing is one of the best advanced physical therapies ever, as it involves muscle strength as well as coordination and balance. Again I realized that those steps I still had to think about consciously came back easiest, while some of those I already did for years and that went into muscle memory, didn’t come back to me at all. I had to relearn them step by step (pun intended). We’re still working on it, but we also often don’t find the time to exercise, so it’s a rather slow process.
It’s always the same pattern with all those things I described above: once my brain remembers how to do stuff, it comes back rather quickly. It’s just that the muscle memory did not get magically transferred from my left side of the brain to the right side. Today, I have regained my balance again, in the sense of learning it anew. I’m a little proud to say that with the strength training I’m currently doing on a regular basis, on a good day I’m able to do at least one pistol squat on each leg.
I was reminded about my loss of muscle memory and therefore wrote this blog post because we were invited to a wedding some days ago. As I’m getting older, this is usually the only time I get to dance (besides ballroom dancing), and at the last weddings we attended, I didn’t like the music enough to join the dance floor. But at this one, the first time I entered the room, holding a beer in my hand, they were playing “Sabotage” by the Beastie Boys, so I knew this wedding could be different. The music later on still catered to the masses, but it was better than what I was used to from other weddings. So my wife and I went on the dance floor, and as soon as I started moving I realized: my body had no idea of how this works. I felt like the proverbial awkward teenager, only without being ashamed and overly self-conscious. I’m way past the point of caring what other people think of me. But anyway, my body did not remember how this whole freestyle dancing works, as it is also not tied to any specific moves that my brain might remember (for some it is, but I’m not that kind of a dancer). I always had fun when dancing and I think I was doing fairly well before, but this time, it felt really strange, as if doing it for the first time. So there I was, with the ability to give you a nice slow waltz if they would’ve played one, but unable to move to the rhythm of pop music.
To wrap it up, I had a great time at the wedding anyway, so no harm done. Maybe I need to start dancing in the bathroom after my morning shower from now on, to practice my social skills and get some new muscle memory of awesome dance moves for my right side of the brain to remember.