A Day in the Life of Someone Living with Muscular Dystrophy

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Inside: Ever wonder about the small things in life you take for granted? Read on to find out how something as simple as eating can be so difficult for someone living with muscular dystrophy.


I doubt that people realize how strategic I have to be about the foods that I eat. For example, a lot of popular, chef-driven restaurants have small tables, huge plates and rarely anything on the menu that doesn’t require a knife to cut.

Oftentimes, I try to sneak peaks at the tables next to me to see which entrees seem the most manageable, but in a lot of the nicer restaurants, I fall short.

When this happens, I resort to feigning as though I’m not hungry and ask the server to box up the leftovers. I’m not peckish, I just don’t have the strength to eat.

Put Yourself in My Shoes

Imagine yourself working on the third floor of a marketing department for a large, corporate company.

In between meetings, you have roughly 30 minutes to eat.

The time is 2 PM.

Your boss assumes that you prefer to eat in the late afternoon, but in reality you’re just waiting for everyone else to finish.

Some people don’t know you have a disability and you fear that a colleague may see your table manners and wonder why they rival the decorum of a pig.

Before you leave your desk, there’s a few things to know:

First, make sure that you have a purse or bag with you at all times in case something is too heavy to carry (it comes up more often than you think and you must always be prepared).

Also, don’t forget to bring a water bottle and a straw with you…

Despite people thinking that a turtle’s life is more valuable than yours, it’s unrealistic that you’d be able to pour and carry your own fountain drink – let alone drink it without a straw. If you forget your water bottle at home, tough shit. You’ll now have to suffer through an 8-hour work day thirsty.

Second, confirm that you packed a spare set of utensils from home. The flimsy, plastic spork available in the cafeteria doesn’t work with your dexterity issues.

Once you have all your belongings, make sure the coast is clear and head to the large door on the right and walk down the three flights of stairs toward the cafeteria.

OH NO…

Someone entered the staircase from the second floor. Now, they’re a few steps behind you and you’re expected to hold the door open for them.

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Great job! You’ve successfully managed to hold the door open for an extra five seconds. But that’s going to cost you…

Next, walk through a long, desolate corridor (you’ve strategically chosen the hallway with the least amount of offices), past the elevator and to the large double doors. Gather enough strength to push open the doors and prepare yourself for the nearly insurmountable task that lies steps ahead.

Walk past the front desk and smile at the admin who always seems to recognize you. Whisper some last words of encouragement to yourself and meet your next obstacle.

You’re now face-to-face with a pin pad placed at shoulder height mounted to a wall. You’ll need to enter a four digit code to open the door and access the hallway ahead.

Take a deep breath, tell yourself you can do it and muster every ounce of strength to press 9-1-9-2 into the pin pad and quickly open the door. But be careful, because you’ll only have enough strength for one chance.
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You did it! Let out a sigh of relief.

Before moving on to the next challenge, stop and ask yourself if you need to use the restroom. The restroom to the left is the least occupied in the entire office, and you know that the soap dispensers and paper towel machines are placed too high for you to reach.

However, colleagues don’t know this and you wouldn’t want to be known as the girl who doesn’t wash her hands after peeing.

Also, did you remember to pack your hand sanitizer?

You take a second and remember you were feeling gutsy that morning and decided to wear the pants with the weird clasp. It’s not always guaranteed that you’ll be able to fasten them and you can’t risk being seen with your pants unbuttoned for the next meeting.

This seems too risky a move and you decide to conserve your strength. Never mind that you haven’t peed since you left the house that morning.

Move on to the kitchen and locate the refrigerator where you left the food.

Rally more strength and open the giant door.

Fuck.

Someone moved your food to the top shelf in order to accommodate their case of Diet Coke.

Quick!

You don’t have much time. You still have to eat and regain enough energy for your presentation in 25 minutes.

Muster every ounce of strength to throw your arms up and knock the food off the shelf in hopes that your muscle memory kicks in and you can somehow manage to sloppily catch the food before it hits the ground.
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Ehh, it wasn’t pretty but you managed to grip the box just enough to save your food.

Next up: the microwave. While a formidable opponent, the microwave is placed in a cabinet just below waist level allowing you easy access. Score! One obstacle you don’t have to plan for.

Open the door and place the brown, cardboard box inside. Set the timer for two minutes and plan your next attack – how to get the box of hot, soupy liquid to the closest chair in the cafeteria without dropping it.

DING. DING. DING.

Open the microwave door and carefully remove the cardboard container.

But just when you think everything is OK, you realize that the heat has penetrated the box making it way more delicate. When suddenly…
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SPLAT.

There goes your lunch all over the kitchen floor.

You die a little on the inside but remember that you brought your credit card with you. Not all hope is lost. There’s still the prepackaged foods available at the onsite convenience store.

Except that you tried to buy a package of crackers from the U-Scan counter last week and realized that you don’t have enough strength to swipe your card. You also don’t have a pair of scissors with you, so how would you open the package?

You now have roughly 15 minutes before your next meeting. That’s hardly enough time to run out and grab something quick.

There’s also the problem with parking – you don’t have enough strength to back out of a parking spot, so you have to make sure there’s one available for you to pull through (it’s only a matter of a few months until you’re unable to drive at all).

You feel defeated and realize that the world is no longer made for you.

Hungry, you make the trek back past the pin pad, the three sets of double doors and up the stairs to get ready for your next meeting where someone will laugh at your growling stomach and comment that you should eat something.

Oh, yeah – might I mention – you’ll also do all of this while six months pregnant.

Final Thoughts

This is a real situation that happened to me and a pivotal moment in realizing that I may need to quit working. I’m met with so many obstacles every time I leave my home that it makes me never want to leave at all.

The absolute smallest things cause anxiety now. Like a situation where I’m expected to shake peoples hands or someone asking me out to lunch at a place where we have to carry our own plates.

Sometimes I find myself in a dilemma between being as open and candid as possible about disability, but also conveying how happy I am.

I can tell you about all of the things in my life that make me happy, but those are the same things that are happening in everyone else’s life too.

My goal is to show the struggles of living with a rare, unknown disease, because that’s not what everyone else is going through. In order to do that, I fear of coming off as querulous at times.

I don’t want to perpetuate any kind of stigma that disabled people are depressed. That’s far from the truth. If anything, I feel that we could actually be considered as more grateful and satisfied with ourselves.

Basically, eating is hard when you have muscular dystrophy.

Are you someone living with a chronic illness or disability trying to adapt to a world not made for you? Tell me about your experience in the comments below!

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1 thought on “A Day in the Life of Someone Living with Muscular Dystrophy”

  1. Wow Al! This was really well written. And explaining just one day of how hard you worked to maintain „normal“ was very eye opening. Thank you for sharing!

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