What’s it like to have my muscular disease? Here’s a way you can try it for a day – for free!

If I could get a dollar every time someone sees me with a crutch or climb up the stairs in my funny little way and asks: “What happened?”, I’d probably make about $18.50 a month. Enough to pay for my audible membership. Yet people never ask: “How does that feel like?”

What's it like to have my muscular disease?

Should you ever find yourself using a crutch, here are the top 5 replies onlookers will expect when they ask you what happened:

  1. torn tendon
  2. motorcycle accident (winter season: skiing accident)
  3. fell on my face doing sports
  4. fell off a ladder because of cat/dog/kid/stupidity
  5. someone drove over my foot

When I tell them, there’s usually silence. Could it be that my standard reply answers all possible follow-up questions with just one witty metaphor?

“You know how superheroes have a genetic mutation and that makes them super fast and super strong? Well, I’m the worlds first superhero that is super slow and weak.”

That’s not on that list, until you go down to maybe #3476.

As much as I would like to believe that my reply answers all their questions, I don’t think it’s the case. Most probably they are shocked by not getting the expected every day reply (featuring dramatic accidents and extended hospital stays), and they feel on too unfamiliar a ground to ask any further. Instead they say “Oh, shit!”, or “How long have you had that?” at best. To which I reply “It’s not that bad.” and “Since birth.”, respectively. Now, that doesn’t expand anyones horizon. They go on with their busy lives, maybe telling their friends they met a guy with a muscular disease and that’s that. Instead, I would like to hear them ask: “So what is that like?” That would allow people a glimpse into my world and maybe understand it a little – instead of comparing it to the time when “I once had to use a crutch for a few weeks because I broke my leg. I know how it is.”

No you don’t.

For those of you that are interested how it does feel like for me, imagine this:

How many rope skips can you do?

Yes I know what you are about to say: you can’t do a single one because you keep tripping over the rope and end up as a #3 on the list above. Okay. Forget the rope. How many times could you jump up into the air? Fifty? What if you took short breaks and then kept going, until you are completely exhausted? Maybe a hundred?

Try to imagine that walking is like that. Picture how you set out to walk somewhere, and you know you can do around fifty steps before you need a break. And then another fifty before you’ll have to sit down or at least lean against something. And after another fifty steps it’s over, and time for a nap. It’s pretty much like that.

Think like this: Whatever physical activity you do – do it really, really slowly. That’s what happens when you need a lot of rest, when everything is 10x heavier than normal and you’re not the fastest to begin with. Putting on shoes? That takes about two minutes now. You’ll have to sit down, put the shoes on, and then try to get up from that stupid chair again. Need to quickly run into the grocery store to get milk and toast? That takes about 15 minutes in the shop alone, plus climbing in and out of the car and carrying that heavy stuff inside. Cleaning the apartment? Sure, that could be done in an hour, but not with a muscular disease. Probably more like half a day, and then spending the rest of the day exhausted on the couch.

A simple way to try it out yourself

Here’s what you do, in a 2-day, all-free, never-to-forget, mind-expanding adventure:

Day 1: Preparation

Go on an all-day hike, from early in the morning to late at night. Up the hill, down the hill. Take photos of goats, pick some flowers. But don’t stand or sit for too long, the idea is to get your muscles sore as heck.

Day 2: Welcome to my world!

Welcome to your trial day in the world of muscular disease. Watch how you think twice before you get up from a chair, and how far away the toilet suddenly seems from the living room. After you decided that the toilet can wait until you walk by on the way to the kitchen anyway, realise that you have to go grocery shopping for the week and then go out and do that*. Schedule to go out with a few friends in the evening, preferably to a place where you can’t park right in front of, and that has a few steps to get in – oh, and the toilet in the basement.

That pretty much sums up the experience in an all-free, never-to-forget experience. Keep in mind though that all muscular diseases out there are different, and I’m just explaining my own experience as good as I can. However, here’s the good news: you get to ignore the muscle pain, because that’s not part of a muscular disease (at least not mine).

*you might be tempted to simply wait with that until you are better, but that’s not a valid option while you are in my world.


text ©Michael Herold  Safe Creative #1401030108909
image ©Jamie Noguchi CC License

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