Category: Everyday Life

Someone asked me the other day what I would be doing as a career if I wasn’t involved in computers. The first thing that came to mind was something math-related, like a statistician. But can you imagine how much work would be involved in analyzing data without having access to computers like we have today?

So that got me thinking about some of the supporting technologies we have now that allow me to live a productive and happy life despite having muscular dystrophy.

1. Power wheelchair

Without a doubt the most important technology I use is my wheelchair. I am using it every waking hour. I can go places independently, meet with clients, take trips, do my daily routines at home, and virtually replace my legs. Without it I doubt that I’d be very happy.

2. Computers / Internet

Being able to work in a field that uses computers as the basis for everything is really a huge perk of living in this day and age. It is also a prime example of the perfect job for someone with muscular dystrophy. The physical workload is not terribly high and the majority of the work is produced by the mind. In an age without computers there would be few menstally challenging but physically non-demanding jobs I can imagine myself being able to do.

3. Cell phones / smart phones

These really could be lifesaving devices if the situation required me to make an emergency call or get help. But there have been many instances where having my phone on me has come in extremely handy. Take for example the time my truck doors got jammed with me inside and nothing else but a carton of ice cream fresh from the grocery store! I would have happily eaten the ice cream but I would have been stuck there all night too!

4. Vehicle technologies

From the advancements in accessible vehicle modifications way back to power steering and brakes, the technology in vehicles have made it easy for people who use wheelchairs to get around on their own. I can’t imagine having to rely on shuttles or others to transport me like before I was 16. It is do-able but restrictive!

5. The microwave

Cooking with a stove is still a possibility for me, but the convenience, combined with the safety of cooking with a microwave definitely makes a huge difference for me. I can easily heat up frozen vegetables or pre-cooked foods and also heat up water for tea or coffee. I don’t have to rely on anyone to do simple cooking tasks for me.

6. Remote controls

I can’t imagine a world without remote control technology. I am not just talking about television remotes either. I love my remote control that operates my van ramp and locks. I am also looking into remote vehicle starters for those cold days when you want the heat to be warm before you get into the car. Throw in garage door openers, remote light switches, and the new things that can be controlled by phone apps and it has never been easier to have a disability!

What “lifesaving” technologies do you appreciate?

We all have bad experiences. Something doesn’t go our way. We’re struck with some bad luck. Maybe we even made a blatant mistake. It took practice, but reflecting on bad experiences has helped me make trials and tribulations easier to deal with. Bad experiences really are learning experiences. Here’s what I do when I need to process and eventually get over something.

1. Examine how I felt throughout the experience.

When I am in the moment, I’m not always paying attention to exactly how I feel. Recently I had a phone conversation where the topic suddenly created this overwhelming anxiety and I just wanted to hang up! In that moment I wasn’t really paying attention to what I was feeling. But now as I sit here calmly and look back, the moment wasn’t nearly as harrowing as it felt while it was happening.

By looking at my feelings from start to finish, I notice when and what something was really affecting me. It’s also nice to realize that the feelings subsided after a short time.

2. Ask the difficult questions about the experience.

Sometimes it’s tough to reflect on difficult experiences. By difficult questions, I don’t mean, “Why did this happen to me?” I mean, “Was I reacting appropriately?” or “What can I do next time I am confronted with a similar experience?” or “What can I do to prevent this from happening to me again?” and of course “What can I learn from this?”

Was I reacting appropriately?
I know many people that could benefit from reflecting on this question. If you can look back and realize that perhaps you overreacted, then next time you might not be so inclined to go crazy. On the other hand, maybe you didn’t react enough and needed to be more vocal and stand up for yourself? Sometimes no reaction is worse than overreacting.

What can I do next time I am confronted with a similar experience?
The value of reflection is that it helps me be prepared for next time. By looking back and figuring out a better set of actions, I can be better able to tackle future experiences. Whether that’s actually dealing with outside circumstances or handling my own internal feelings, being prepared is ultra helpful.

What can I do to prevent this from happening to me again?
If the situation happened because I didn’t do my research or study hard enough or ignored warning signs, then I like to make myself aware of what I could have done differently. In my earlier example of the anxious phone call, I know now that I could have spent some time preparing and doing a little research. Lesson learned. Answering this question with “There was nothing I could have done” is okay, however I try not to come to this conclusion right off the bat because more often than not there is at least ONE tiny little thing I could have done differently.

What can I learn from this?
I can’t go back in time, so spending a lot of time being anxious over a past experience is not worth it. But it is worth asking what things I have learned by experiencing what I have experienced. In some sense that’s what this entire blog is about — looking at what might be called the “bad experience” of having muscular dystrophy and figuring out all the things I have learned along the way. Personally it makes what some might see as a bad experience, one that has been a tremendously beneficial one.

3. Acknowledge and move on.

I do find a ton of value in reflecting. But for me, it’s important not to dwell too long. Holding onto the feelings associated with a negative experience can make me lose sleep. It’s just not worth it. But when I find time to reflect and then become satisfied with my answers and lessons, I will consciously tell myself to move on.

So that’s how I do it. And of course this doesn’t mean all bad experiences feel like learning ones when they’re happening. I just trust that by looking at my bad experiences I am making my future difficulties easier to manage. And so far it seems to have worked for me.

Let’s assume you are about to spend an afternoon with your friends. You’ve got three hours scheduled for a nice game of cards. If you’ve got muscular dystrophy, how much of that time is impacted by your disorder?

For me, I’ve calculated that of the 180 minutes, only 2 minutes are impacted by my muscular dystrophy. That’s roughly 1.1% of the scheduled time. That means 98.9% of my time is enjoyed playing a nice game of cards with friends.

To get to two minutes, I estimated that it takes me an extra 30-45 seconds to get in and out of my van once I arrive, and another 30-45 seconds to get back in. Then if I have to run to the bathroom, that takes an extra 30-45 seconds as well. Your particular additions may vary, but even if it takes you 10 extra minutes, that’s still only 5.5% of the 3-hour card game.

It’s interesting to think about how much of your day is actually affected by muscular dystrophy. True, I find myself in a wheelchair all day, but as I’ve mentioned before it’s something that is not difficult for me to deal with. So in essence, there are several small pockets of time that I might think are annoying enough to attribute to the effects of muscular dystrophy.

Let’s go extreme for a minute. Pretend six hours of your day is eaten up by dealing with muscular dystrophy. Let’s assume you’re awake for sixteen hours. That means 37.5% of your waking hours are affected by the disorder. But that also means that 62.5% of your day is not. That means most of your waking day is not affected.

This is one reason I get frustrated when people seem consumed by their disorder, particularly when it’s not as extreme as it could be. There are ways to optimize that unaffected time through hobbies, games, visiting with people, and of course, employment. Yes, everyone’s strength and skills are different. Pain could also be a factor. But the bright side for me is that I think many of us who have muscular dystrophy don’t spend a significant amount of our day actually dealing with muscular dystrophy.

Just something to think about.

Sitting in the same seat all day would probably seem like torture to some people. Prior to having to use a wheelchair I may have thought the same thing. But since I started using a chair full time I have never felt this way and I started to wonder why.

The first thing that came to mind was the comfort of my seat. My Roho cushion is filled with little air pockets so I never feel pressure in one particular spot — at least not for very long. At the end of the day the only reason I even notice my butt is usually because a crease in my pants has created some sort of bump. I don’t really feel a need to “stand and stretch” like I used to when I was walking. My seat is also a little bouncy so when the right song comes on the radio it makes seat dancing easier. I don’t do this in public, so don’t ask!

Another reason I don’t mind sitting is that I know what sort of power my wheelchair gives me. It gives me freedom to travel. I can go places I would never have gone while walking. I can go shopping, out with friends, meet with clients and stay independent. I know that without sitting in my wheelchair all day, I would never go anywhere. This is also why causes like the Wheelchair Foundation are important to me.

Lastly, I think the fact that I don’t get frustrated with having to use a wheelchair means I’ve accepted this necessity and moved on to bigger and better worries, like where I’ll go on vacation next! This is particularly easy to do on a day when snow has been falling. But really, I am happy I don’t worry about it anymore and I think there are many people out there who use wheelchairs that feel the same way.