MS Killed It for Me
What are your hobbies?
Before I was diagnosed with Multiple Sclerosis (MS), people used to ask me what I liked to do for fun, and I always struggled to come up with an answer. What were my hobbies? What did I enjoy doing? I couldn’t ever really think of anything. Fast-forward about 8 years or so, and I can now see what I should have obviously said because there were so many things that I used to do for fun! But I think I just took them for granted to the point that they never even came to mind when I was asked that question. Over time, MS unsurprisingly made those things more difficult for me to do, until I eventually couldn’t even consider them as an option anymore no matter how hard I tried. One by one, MS seemed to pick off activities that I was capable of participating in and so I quickly learned to spot when I was losing a function that was necessary for something I enjoyed doing.
I didn't want to wait for MS to take something
Now, I didn’t want to wait for MS to take a hobby from me. Now, I wanted to stop doing whatever it was that was starting to become difficult on my own, so that when I thought back on that activity, I would only have memories of me enjoying it and being good at it instead of having memories of me struggling to maintain it and eventually losing the ability to actually do it. So yeah, looking back, I can say there were many things I enjoyed doing but… eventually, as soon as I noticed that one of those things was becoming difficult and getting to the point that I could see how I might soon not be able to do it anymore, I would give it up on my own, so I wouldn’t have to live with the pain and frustration of knowing that MS had taken something from me that I once loved. For many things, I would rather just say that “MS killed it for me” than fight to hold on to it for as long as I could.
Bowling and MS
First, I want to give you an example of something I enjoyed doing but was taken from me by MS before I could give it up on my own. Something that was probably the first thing I lost to this disease that I would say really led to me thinking the way I do about whether I should give something up on my own or let MS snatch it away from me when I can no longer hold on to it. Bowling. Say what you want, but I loved bowling. When I was about 18, I worked at a drugstore and every Monday after work a group of the employees would all meet up at the bowling alley and rent 2-3 lanes, depending on how many people showed up. Most of us were just trying to have fun; it was just an excuse to go out, spend time with friends, and goof around, but a few of us got really competitive, including me. I didn’t have my own bowling shoes (Me? Slip and fall? Never!) like them, and I didn’t feel like I needed any of those wrist braces, but I did have a custom fit bowling ball (measured and drilled to fit my hand) with a weight in it to help it curve because, of course, I didn’t bowl straight, I had to take it up a notch and try to bowl like the pros.
I remember it so well
I remember the motion in my head so well: how many steps I took while staring down the lane, how it felt to balance the shifting weight of the ball while swinging it from in front of me, to behind me, to back in front of me before letting it go, and even the tiny movements I had to make with my wrist just before letting the ball fly down the lane to make it spin just enough to make it ride the very edge of the lane and gutter before curving back and hitting the center pin from just the right angle to get a strike. I never bowled a perfect game, but I was usually in the low to mid 200’s (a perfect game is all strikes equaling 300), and a few times I walked away with all strikes and spares! I still have the score print-outs to prove it because yeah, that was us, collecting score printouts.
After a major relapse
Anyway, I digress, what’s important to note here is how for me, bowling required so many intricate movements and a lot of balance. To be able to manage the shifting weight of the ball while swinging it from front to back to front and then let it go while momentarily balancing on one leg? I never thought anything of it at the time, but then a few years after MS came crashing into my life, a friend asked me if I wanted to go bowling. I had just recently suffered a major relapse that had put me in the hospital for 6 weeks, and I think she was trying to cheer me up but unfortunately, it kind of backfired. We went to a new alley that had just opened up and… I sucked. I could not even take the 3 large steps I always took before letting the ball go; I didn’t have the balance or coordination to make that ball do what I wanted and go where I wanted, especially when managing a swinging weight on one side of my body.
I didn't want to ruin all my memories
I think I walked away with a score in the low 60s, and I was so depressed because that was the first major time I had tried doing something I was previously good at but could now not even come close to doing because of MS. So now when I think back on bowling? All my memories of me being good at it are stained by the memory of that day that I realized I couldn’t bowl anymore. The last day I bowled. I never wanted to feel that way again. I never wanted to feel like MS had actually robbed me of something I really enjoyed. I didn’t want to ruin all my memories of me being good at stuff with memories of me sucking at it and struggling to come to terms with the reality that my ability to do those things was now in the past.
MS didn’t take it from me, I gave it up!
After that is when I really started to try to recognize when something was becoming difficult enough that me eventually losing the ability to do it was probably inevitable. I wanted to cut ties with those hobbies before MS had the opportunity to override my memories of being good at them with memories of me struggling. At first, this seemed to work but eventually, I gave up so much that I started feeling like I didn’t have anything left to surrender, not on my own or to MS. I have since realized that this little tactic of mine was probably not healthy, physically or mentally. When dealing with a neurodegenerative disease like MS that tries to take away our ability to do things, the only way to possibly not lose them is to practice them.
You will never know unless you try
It doesn’t matter if you are trying to maintain your ability to do something fun like bowling or something purely functional like eating food with a fork without your hand shaking your meal all over the table, the only way to try to prevent the neural pathways in your brain that allow you to do those things from disappearing is to continue to exercise them. Yeah, in time, you may lose the ability to do some things, regardless of how much practice you put into it, but maybe you won’t? Maybe there is a chance that you won’t lose the ability to do something? One thing is certain though, if you try to preemptively give something up before MS takes it from you? You might be giving up the chance that you will ever be able to do it again. Who knows? Well, you for sure won’t know if you just stop trying as I have done with so many things. I regret letting myself think the way that I did for so long, because I might be somewhere different today had I fought to maintain those skills and hobbies but now? Now I will never know for sure.
Do you have a fear of needles and take medication that requires injection?