What it's like to live with a progressive neuromuscular disease

Sunday, December 4, 2016

Survival of the Fittest?

The first time I ever went dancing with my now husband, he called me Elaine. Of course, as a fellow avid Seinfeld watcher, I knew exactly what he meant. I wasn’t offended, because if there’s one skill I always had confidence in, it was my dancing. If you’re not familiar with that particular Seinfeld episode, it’s the one when Elaine gets a company party going by showcasing her hilarious, ridiculously uncoordinated dance moves. I think what perhaps my husband was tapping into at that moment was my complete lack of self-consciousness on the dance floor. (Or so I liked to believe.) You know that bumper sticker that says, “Dance like no one is watching?” Well, before I ever read that, I never even knew that was a thing. Was I supposed to feel self-conscious when I danced?

Dancing has never really felt optional to me. It’s almost like an involuntary reflex. I cannot hear a good beat or feel a soulful rhythm and sit still. I just don’t know how to do that. I’ve never understood people who sit in their seats at a concert. I’m not judging, it’s just not something I can relate to. I can’t even sit still in my car when a good song comes on.

I did a lot of dancing up through my mid-20s. But then, between residency and having kids, life just didn’t really allow as much room for it. Plus, the times I did try to go to a club or a bar in my 30s, I either didn’t recognize the music or the dancing didn’t start until far later than my chronically tired adult self could handle. That’s partially why for my 40th birthday, a year and a half ago, I had a dance party with my very own DJ who could play my very own favorite songs. On some level, I knew it was maybe going to be my body’s last chance to “dance” in a way that still felt somewhat familiar to me. I had a blast that night. I didn’t care so much that I was “dancing” with my cane. Or that I couldn’t move my body in the way that I used to. The joy I felt being surrounded by so many good friends and such good energy took over. I felt satisfied that I had one last all out dancing hurrah.

I hadn’t attempted to dance since that night (not counting in my car or with my boys at home). But then last night a dear friend of mine celebrated her 40th birthday with a dance party. I could not have been more excited to go. I love her deeply and even swore to her on the phone hours before that I would be the first one on the dance floor and the last one to leave. Sounds kind of silly now writing it out loud, but I genuinely believed it. I went in with that exact intention in my mind and in my heart. But, as is often the case lately, my body had different plans for me.

I was so excited when the lights dimmed and the first good song came on. I jumped up and made my husband come with me. Not just because I love him and would always prefer to be with him than without him. But also because I now need him if I’m going to try to do some semblance of dancing and expect to stay upright. I was actually quite impressed with myself. In spite of the fact that I had to hold on to at least one of his hands the whole time, I was still able to get lost in the music. I felt happy. Pleasantly surprised. But of course, I couldn’t keep it up for very long. I started to fatigue. And no matter how good of a sport my husband is, if you know him, you know that a crowded party and loud hip hop music is not at the top of his list of favorite things. We sat down back at our booth. We had spent most of the night sitting at that booth simply because I can’t stand for very long. I’m actually amazed that most people seem to be just fine standing all night at a party. We didn’t know many people there which was fine, but small talk’s never really been my thing and because we were sitting and most everyone else was standing, we weren’t doing much interacting.

My husband slowly drifted into his phone and I just sat next to him. People were really starting to get down on the dance floor. Then some of my high school favorites came on- Beastie Boys, Run DMC, Black Sheep. Music that made me not just nostalgic for my youth, but for my pre-diseased body. The body that would’ve hopped up, with or without my husband and joined the gaggle of girls dancing with the birthday girl. The body that would have felt sweaty and alive and carefree. The body that could have expressed her celebratory feelings in the most disinhibited way. I initially took so much pleasure in seeing other peoples’ pleasure in dancing, seeing them shimmy and shake and put their hands up in the air. But after a while, all-of-a-sudden, it started to feel like too much. I wanted so desperately to be just like them. I wanted to partake in that kind of fun. I wanted to have my body back. Just for one night. And just like that, sitting in that booth, staring onto the dance floor, I started to cry. I desperately tried to hold it in, to distract myself, to focus on how happy the birthday girl was, but it wasn’t enough. I didn’t even want my husband to see. I didn’t want to “ruin” the night for us. The kids were sleeping at my mom’s. This was going to be a super fun night. I looked at him, made some snide comment about him being on his phone and then let it out. He cradled me into his chest and I let in all the pain. It hurt. On top of it, I felt sad that the collective joy of the night wasn’t enough for me to keep it together. I felt foolish that I didn’t recognize the role denial was playing until it was too late. (Which is silly, because that’s exactly how subconscious defense mechanisms operate.)

I lasted long enough to sing happy birthday and watch her blow out the candles. Then we snuck out and I continued to cry the whole way home. Tears for the past, present and future. For all the upcoming dance parties I wouldn’t be able to enjoy. My husband lovingly and jokingly reminded me that I probably didn’t have to worry too much about future dance parties since we don’t really get invited to that many these days. I laughed because he was right. And then I cried some more.


I haven’t blogged much lately. Not because I haven’t had anything to share, but because the more depressing the losses, the harder it feels to put them out there. I am experiencing changes in my body that are becoming increasingly harder to manage. People used to ask me if I had pain associated with my disease, and they (and I) took comfort in the fact that I didn’t, but now I do. I suppose it was only a matter of time before I experienced the kind of chronic pain so many other patients have described. I am starting to experience more fasiculations in my larger muscle groups, primarily my hamstrings. Fasiculations are involuntary muscle contractions that can be normal in people with healthy muscle tissue, but in someone with a neuromuscular disease, it indicates a dying muscle’s last-ditch attempt to contract. I now have enough swelling in my feet to warrant considering wearing compression stockings. That might not be so bad except for the fact that my weak fingers won’t even be able to pull them on. The other day my younger son asked me to come outside and play basketball with him. He and I both know I can’t really move around, but that day I discovered I no longer had the upper body strength to throw a basketball over head.

I don’t have a satisfying message here. I don’t have a silver lining in any of this. There is simply only one thing I can rely on and that’s the purely biological process of adaptation. I recently read a quote modifying Darwin’s theory of evolution: “It’s not the strongest or the fittest who survive, but those who can adapt best to change.”

I have to believe the same thing I tell my patients all the time-we are biologically wired to survive, to move through and adapt to loss and change. I have to believe that though my circumstances may never change, the intensity of my emotional response to them will.

I have to believe that. Because I simply don’t know how else to move forward without it.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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