I wish I could make multiple sclerosis my costume for Halloween

I had a run-in with a nasty, mostly waterborne parasite years ago in Afghanistan. I managed to catch it by, you guessed it, contact with infected water — not by actually drinking it, but by washing my hands off in an irrigation ditch and then sticking them in my mouth. I was the only one on the team to contract it because, apparently, while I was good at giving advice about avoiding vector risks, I wasn’t good at following my advice.

In case you’ve never heard of it, let me be the first to tell you that being infected with giardia is quite an experience. When the symptoms began, I thought I was going to die. For the next 12 hours or so, I sort of wished I would’ve.

As luck would have it, I was staying at an old Russian air base that had some indoor restroom facilities, but they were only a small step above a hole in the ground. This sort of thing called for comfortable, familiar plumbing fixtures, and they were half a world away. Gut-wrenching is an apt description, as long as you consider that most of the wrenching is happening at the very bottom and very top of your guts.

My complaints about it reached home, and, in what can best be described as playfully dark humor, my little sister sent me a plush giardia doll. Its features are exaggerated to make it a little more palatable (if you’ll pardon the expression), but otherwise it’s a fairly realistic depiction of the protozoa.

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It’d be a fun and somewhat recognizable creature to make into a trick-or-treating costume with my kids tonight for Halloween. But I’d rather dress up as multiple sclerosis (MS), as I consider that a lot more terrifying. Trouble is, I have no idea how.

The same company that makes the giardia doll also makes a nerve cell. I suppose I could dress as a neuron and make tattered spots where MS has attacked the myelin sheath, but that wouldn’t exactly be an MS costume. It wouldn’t represent the disease, just show some of the damage it causes — sort of like dressing as a flattened building rather than the monster that trampled it.

Making MS visible and tangible

I suppose I could just go out in my wheelchair with a sign around my neck that said multiple sclerosis. However, by similar logic, that wouldn’t be a depiction of the disease, either, or even of the average person with it. All that would be on display is what the disease has done to me. How do I dress up as symptoms, especially when my symptoms aren’t exactly like anyone else’s?

I could go as the Invisible Man. After all, most of my symptoms go completely unnoticed, and the disease itself is absolutely transparent. I’ve also noticed that I sometimes seem to disappear completely when I’m in my wheelchair. Maybe it’s because I look like I need help and might be about to ask, and your average person doesn’t want to be burdened by that. Whatever the case may be, I often think that if my chair were a little shorter, people would occasionally try to step over it.

I’m sure that we’ll see ghosts, witches, vampires, and all sorts of ghoulish costumes tonight. I don’t want to get into a philosophical argument about whether such things exist. The point is that all those are known quantities, usually depicted as physical creatures or things that can be touched. Multiple sclerosis is not one of them, and not just because it doesn’t appear in a lot of pop culture books or movies. In the same way that it’s hard to be a monster hunter when you have no actual monster, it’s hard to fight against or even hate MS when it’s not a physical entity.

Giardia isn’t a rare or tropical disease. It can be contracted on any continent (except apparently Antarctica), and I was a little offended to catch a disease in a foreign country that was fairly common in my own. My offense was short-lived, however, because I managed to contract Q fever, a somewhat rarer febrile illness, two months later.

I guess I could dress up as that, as it’s actual bacteria, but that’s not very scary, unless you happen to think ovals are scary. Multiple sclerosis is scary, but I wish I had a better envisioned enemy to fear. I still wouldn’t open the door tonight and give it any candy, but being able to see it instead of merely its path of destruction would make it less frightening, somehow.

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.