Category: Everyday Life

There are many things that make me physically uncomfortable — wearing wet jeans, sitting on a crease in my pants, sleeping on one side for too long — just to name a few. But there are also a bunch of situations that make my brain uncomfortable and I’ve begun to pay attention to those.

What I realized, was that many of the things that make me mentally uncomfortable are things I should be doing or things that would benefit me directly. For example, I can be a little bit too accommodating when something doesn’t go my way. If something does fit right, I might deal with it instead of return it. If a hotel room isn’t perfect, I might not say something. If a coupon is rejected, I might not escalate it to the manager if I think I have a case. I go with the flow.

But avoiding an uncomfortable situation that involves the slightest bit of confrontation is probably not in my best interest. I should do what makes me uncomfortable.

Another example is meeting new people. Once I am talking to someone I am fine. I can hold a conversation. But for some reason I feel intimidated or overwhelmed about meeting new people or starting up a conversation. This definitely makes me uncomfortable.

But starting a conversation can lead to a lot of things, like learning a bunch of new information, meeting someone cool, or finding a business prospect. All of these things are benefits, not drawbacks of talking to someone new. So why don’t I do it more often?

As it pertains to muscular dystrophy, there are times when it can feel uncomfortable asking for an accommodation or asking someone for help. I still feel this at times even though I’ve gotten much better at it in recent years. But this is something I think a lot of people feel when it comes to a disability — they don’t feel comfortable asking for help or asking for what they need. But by doing so, there is a lot to gain — independence, freedom, fun, you name it.

Overall I am starting to learn that I should definitely avoid being physically uncomfortable, but I should try to make myself mentally uncomfortable more often. In my experience, the discomfort either was unwarranted or subsided dramatically after time and practice.

What makes you uncomfortable?

I went through several weeks of frustratingly fast decline in my wheelchair battery life. They wouldn’t charge very long and therefore lasted only a couple hours at the most before I was down to one blinking bar on my power gauge.

I spent a few weeks working with MDA trying to find a local vendor who would supply new batteries as part of MDA’s yearly repair allowance. During that time I was noticeably changing the way I operated:

1) I was declining invites to do things that might require more than a little bit of wheelchair travel.

2) I was putting off errands because I couldn’t go to more than one store at a time without having to charge up.

3) I gained weight. It was easier to sit around and eat than it was to do anything else.

4) My house got messy. I didn’t want to waste battery power rolling around and tidying up.

The day after I got my new batteries, thanks to a Milwaukee wheelchair dealer called Miller Mobility, I was back to my old self. I lived a regular day again. I even made it through the first 24 hours without losing a single bar on my power meter — and I did a lot!

So I have a newfound appreciation for healthy wheelchair batteries, not to mention a healthy attitude. I also greatly appreciate the help I got from Crystal at MDA in Hawaii and Mike from Miller Mobility in making this happen. Thanks guys!

I was at a doctor’s appointment five years ago and told the doctor I had started playing wheelchair tennis. Since he had just tested my arms strength, he looked at me like I was nuts and asked, “How do you do that?”

“Momentum,” I said as I demonstrated by swinging my arm using the rest of my body.

My doctors usually test strength in isolated areas, like just the bicep or just the tricep, etc. But when all my muscles work together I can generate a lot of momentum and do things with my arms that would be unexpected, like swing a tennis racket.

Another example of momentum coming in handy is reaching for things. Sure I cannot lift either of my arms above my shoulder, but if I swing that arm, I can reach much much higher.

My electric wheelchair also helps me generate momentum. When I am changing the sheets on my bed, for example, I grab the pillows one by one and spin my wheelchair around like I’m a shot putter and launch the pillows onto the couch. This motion also helps for tennis but for things like throwing a frisbee or a ball as well.

Momentum also helps me get into and out of bed. After sitting on the side of my bed and pulling my left leg onto it, it’s the momentum created by tipping myself over which helps swing my trailing leg up into bed with me. Same goes for getting out of bed.

I also leverage momentum with life in general. As I stay on track with work tasks, get out of the house, hang out with family and friends, and do the things I love to do, I create momentum in my life and don’t allow myself to get bored, depressed, or angry.

My ability to function would surely be much more difficult without momentum. How do you leverage momentum?

There are some things about having muscular dystrophy or any disability that require you to train the people around you so that some things become automatic. I’m not saying you need to have a training class and you should never expect everyone to be at your disposal, but there are situations that arise which offer opportunities for you to tell people why you need something the way you need it. Then they’ll remember next time.

For example, people will serve me beverages in whatever cups they want to unless I specify, “If you could please put it in a plastic or lighter cup, that would make it really easy for me to lift it and drink it.” Not only am I asking for what I need, but I’m telling them why I need it that way. This seems to help people make the connection and remember it for next time. Remembering to say “Thank you ” for the accommodation is also an important thing to do.

Here are a few things I’ve noticed recently that I’ve had to train my friends/family to do over the years.

1) Serve my drinks in the lightest cup/glass possible

As I mentioned, reducing the weight of a cup makes it much easier for me to drink whatever is in it. Light, thin plastic cups work great. Heavy beer mugs or coffee cups do not. True, a straw would be helpful but not everyone has straws at their homes. Also true is that the amount of beverage could be reduced, but then who wants to do that?!?

2) Keep me warm

I hate being cold and am prone to being colder than everyone else around me. If someone wants to open a window, I don’t even have to ask for a blanket anymore. Same goes for a group event that is outside. My family knows they’re gonna have to sit me right next to the grill or the campfire or cover me in blankets. It’s almost automatic. I also carry my own extra blanket in the car and have been investigating heated clothing as well, so I can keep myself warm too.

3) Help me with food

In buffet-style situations, I’m not the most adept at putting food on my plate. So at parties or restaurants where food is self-serve, it’s an automatic. If I am feeling particularly healthful that day, I can also tell the person helping me to keep the portion size small and therefore restrict myself from eating like a pig.

4) Get out the ramps

There are a few places I go where my friends/family meet me at the car to grab my wheelchair ramp when I arrive so I can get right into their homes. This works really well when it is cold out because I can just wait in the warm car until the ramps are all set up!

5) Know when not to help

There are times when I don’t need as much help as people might assume. It’s also important to politely train people to know what you don’t need help with. For example, I’m not a baby bird and don’t need my food chewed for me first! But if someone offers to do something like cut my steak for me, I politely say, “Thank you so much for offering, but it’s great exercise for me!” or something to that effect.

Part of the reason this “training” is important is because it helps me feel more “normal” and less high maintenance in future interactions with people. When I don’t have to ask for something, I don’t feel like an inconvenience but still feel special because someone remembered. How have you “trained” the people around you to help you out?