Thanks to MS, I can relate to my skeleton Halloween costume

I’m not sure exactly when it happened, but at some point, I stopped putting on a costume and going trick-or-treating for Halloween. Years passed, and with the arrival of my children, I found myself happily joining them in their various celebrations of the holiday. They may eventually outgrow it like I did, but for now, I’m enjoying this time as much, if not more, than I did the first time around.

We go to fall and harvest festivals, watch Halloween-themed TV shows, and, even though I can’t eat it, I intend to be as involved as possible in their door-to-door candy collecting tomorrow night. I’m even planning on wearing a costume, and I’ve found an appropriate one. My mobility issues from multiple sclerosis (MS) don’t really limit my choices, so long as I don’t mind incorporating my disability.

I don’t mind — but a disabled vampire, a werewolf in a wheelchair, or an easily fatigued ghost never felt completely authentic. This year, I’m going as a skeleton — in a wheelchair, with compression socks on — which seems more appropriate than the other choices. The more I think about it, the more I have in common with a reanimated skeleton.

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I am not just a collection of bones, but despite my best efforts with diet and exercise, sometimes I think I might as well be. I may have muscles, but they’re very uncooperative, and like a skeleton, I feel very loosely assembled. A skeleton is probably more coordinated than me, but if either of us were to fall down, we would probably collapse into a twisted heap. The only difference is that I would complain more.

Then again, I’m not sure anyone would be able to tell I was complaining. I have both a tongue and vocal chords, but there are times when I can manage only unintelligible noises. My skull may not be empty, but it does get foggy sometimes, and finding the right words, or even the appropriate ones, can be difficult. When this happens, I’d almost rather be like some of the skeletons in movies and just silently gesture.

This, of course, can add to being misunderstood, as though I need any more of that. Even before MS, I wasn’t particularly scary. When you think about it, a skeleton isn’t either, but we’re both different and interact in unusual and unexpected ways, and apparently that can be intimidating. I think people struggle with how to engage with me, just like they would if I were a supernatural being. That could be why we’re more comfortable, interactive, and supportive of those who are like us.

It’s no castle, and certainly not a graveyard, but like a skeleton, I tend to haunt the same place and usually only come out at night, especially when it’s hot and bright out. Maybe they just want the comfort of familiarity, too. At home, I know where everything is and how best to navigate the house and yard. This is safer and more comfortable for me as I become more disabled. Plus, both skeletons and I probably tend to be more outgoing in areas we know well.

I know I’m not some supernatural staple of scary movies, but sometimes I feel a lot like my Halloween costume this year. I know many of you understand, and I’m sorry. MS can make it seem like we’re just a piece of a functional human being, but we’re so much more than that.

I hope you understand that, too.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.