Author: youshouldgoanyway

A friend asked me how I dealt with muscular dystrophy and losing the ability to walk. I have written about this before a little but came up with a little more hindsight on this topic I thought I’d share.

I realized that gradual change, in general, is easier to deal with than sudden change. In this respect I have been fortunate that my muscular dystrophy has progressed very slowly. I usually tell people that I have to reflect back years to see major differences in my abilities. With minor changes, I often adjust before I realize anything has changed.

Because of this, I think my brain also has time to get used to and accept the new changes, so they don’t upset me. That’s not to say that in my teens I didn’t have a lot of worry and frustration. I did. But I think my worrying at the time went far beyond the reality that was presenting itself. I was still doing everything I had been doing, but I was slowing down. I was more upset about the future.

Now that part of my future has arrived, I find that the worrying I did twenty years ago was definitely too much. Things have turned out much better than I’d worried. Using a wheelchair wasn’t as big of a deal as I thought it was. It actually became a relief for me to use a chair and I love every minute of it.

During the time of my life when I was transitioning from walking to using a wheelchair, I also had some self-imposed challenges that had nothing to do with my disorder. I was in the process of getting my web development company off the ground. The task of finding new clients, completing the work, and paying all the bills was a great distraction from what was going on with me physically.

I hear this often, actually. People find that distractions like work, hobbies, or adventures help relieve the worry, tension, or pain associated with their diseases. I think this also works for people struggling with non-physical challenges like grief, divorce, or empty nest syndrome.

So I am thankful that my progression has been slow. I am also glad that I feel I am armed with the tools to deal with any future surprises that come up due to my health or other circumstances. It’s definitely something I’m glad I’ve learned and not sure I would have learned it by any other means than dealing with muscular dystrophy.

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?