Category: Everyday Life

My decision to start grad school in Hawaii was more a function of location than actual academic ambitions. I got accepted into my program of choice and was rewarded with some tuition assistance, so it really took little thought on my part — go back to Wisconsin and suffer the winters or go to Hawaii where there’s no word for “winter” in Hawaiian? Decision made.

One of the first things I did when I arrived in Hawaii was meet my academic advisor. He was a professor in my department whose office walls were adorned with degrees and certificates. I sat there and listened to him talk about the program and what the courses would entail. Then he mentioned there would be field trips and I stopped him there.

“One thing about the field trips. I have muscular dystrophy so it can be difficult for me to climb around and do stairs. Do you think this will be a problem?” I asked.

“Well…yes…I am sure we can figure out a way around this. But can I ask you, what exactly is the problem with your muscles?”

I gave him my regular blurb about what muscular dystrophy is and how it affected me which was met with a blank, if not frightened stare.

“Is that contagious?” he asked.

I am not quite sure how high my one eyebrow raised up at this statement but I’m pretty sure it was leaping off my face in astonishment.

“Uhhh…no…it’s genetic.” I replied. A split second later I realized I should have said, “Yes, it’s contagious and I forgot to wear my face mask today so you might want to wash your hands after this meeting!”

Not imagining I could be asked a sillier question, he stated, “Do you know they have DNA pills you can take? You should try that!”

I somehow summoned-up the ability to reply without laughing and said, “Ok, I will check that out.”

Needless to say, I couldn’t take the guy seriously for the rest of the meeting. Unfortunately he was also the instructor for many of the classes I ended up taking. But when it came time for me to decide whether or not to continue my studies or take a full time computer programming job, I had no problem making up my mind.

And now back to my computer programming.

But seriously, at the time I did find it astonishing that someone with so much education had no idea that muscular dystrophy is a genetic disorder. This encounter made me realize that unless someone has experience with muscular dystrophy, they may not know that it’s a genetic disease and they can’t catch it. So I forgive my advisor for not knowing all the details and I also remember to make sure I bring up the fact that it’s a genetic disorder when people ask me about it.

It’s comforting to realize and remember that complete strangers are out there and willing to help me if necessary. I’ve encountered dozens of these people throughout my life. The interesting thing is that I never know when one of these meetings will occur. I don’t remember all of them, but I do remember some.

I met one of my favorite helpful characters one night about ten years ago. At the time I was still walking but could not stand up from a chair without a friend’s help by using my old trick for standing up.

My friend Ruthie and I were eating all sorts of crazy Thai food — the main thing I remember were these crispy wiry noodles called Mee Krob, which I loved. So we ate and sat and talked for a while until it was time to go.

Ruthie knew the drill and I prepared to stand up with her help. For some reason, my shoe was sliding a bit on the floor, however and I couldn’t get to standing right away.

Just as I was about to plop down and try again, I felt two thick arms reach around and bear hug me from behind. A noticeably German voice bellowed, “I help you! I help you! Let’s go!” and suddenly I am being jerked about in almost every direction while bouncing off the plump bosom of this large German woman.

Ruthie laughed hysterically at the sight.

Finally I said, “Hang on! Hang on! Let’s start over!” and the woman finally released her clenching grip.

She started to tell me all about the man she takes care of and that she can lift me up all by herself! Or at least that’s what it sounded like through her broken English. I could just imagine her hoisting up the old man and spinning him over her head like a baton, all while wearing  a traditional German costume.

I explained to her that I would love her help but I just needed her to put her foot down on the floor to block mine from sliding while my friend lifted me. We tried it, and I could see her trying to restrain herself from grabbing me again while Ruthie successfully hoisted me from my chair.

I got upright and composed myself and thanked the large German woman for her help. Ruthie and I got in the car and laughed all the way home. Now whenever I see her, Ruthie breaks out her German voice imitation and I appreciate that I can laugh about all of it!

When traveling with a disability, unless you are specific about your needs you can’t expect to get the proper assistance. Sometimes, however, you get more than you need. At the time in my life when I was still walking, I flew back from Hawaii to Wisconsin to visit family by myself and experienced just this.

Struggling to walk and carry everything, I requested a wheelchair to the gate where I sat and waited to board. At boarding time, I got assistance to the plane door, where the guys stood me up and I walked onto the plane. To maintain my balance, I held the shoulder of the guy leading me down the aisle to my seat.

During the flight, I noticed that the flight attendant who served me my beverages was always putting the cup down on my tray, then taking my hand and guiding it to the cup. At first I thought she was just being really nice. But after the third time I realized she must have thought I was blind! This made sense because she saw me board the plain, holding the guy’s shoulder for assistance like blind people do sometimes.

I laughed to myself and made a conscious effort thereafter to freak her out and smile at her every time she came down the aisle. She was probably thinking “How does he know every time I’m here?”

After the flight, I sat there and waited for the wheelchair attendants to arrive and there was nothing else to do but talk to whatever flight crew was stuck on board with me. So I chatted with one of the other flight attendants and jokingly said that the other flight attendant thought I was blind to which she began laughing and said, “Yeah we cleared that up with her about 3/4ths of the way through the flight!”

It’s easy to forget there are things you can control about your life even though you have muscular dystrophy or another disability. One of these things is overall general health. It’s always odd to go to the doctor and talk about how I have muscular dystrophy but otherwise my overall health is pretty good. I do need to lose some weight but at this point I have been doing well.

In the past, however, I have found myself thinking things like, “Oh I have muscular dystrophy so I don’t really care if I have a few extra pounds.” or “Oh I have muscular dystrophy so it doesn’t matter if I don’t exercise. What difference will it make?”

These are very dangerous thoughts, which I have fortunately been able to control 90% of the time.

It’s dangerous to think these thoughts because vices like being overweight or otherwise unhealthy can snowball the effects of the disorder you already have. For example, if I eat too much and don’t exercise, it’s likely I could get diabetes. It’s likely it would come faster too because my overall level of activity is much less than the average person.

So I’m trying to keep my future health in mind. If I am able to maintain an otherwise healthy lifestyle, then the impact of muscular dystrophy on my future will hopefully be less than if I was dealing with the effects of other problems.

One way I remind myself to try to stay healthy is by looking into my future by seeing what my parents are dealing with, health-wise. My dad has a lot of issues that have caught up with him over the years and I don’t want to fall into that path. My mom has her issues too, and while I don’t follow her patterns, it’s still something I am aware of.

For me, it all boils down to decisions. A decision to eat good vs. bad foods is a difficult one at times, but it feels better when all is said and done. A decision to exercise instead of play a computer game is also another decision that takes effort, but feels better.

It’s tough to remember that these small decisions have a much larger impact when they’re grouped together over many weeks, months, and years. The effects aren’t immediately noticeable. But in trying to think about the future, it’s easier to make the good decisions than it is to worry about what happens if I’m not making them.

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.