Tuesday, July 28, 2015

Muscular Dystrophy Perspectives: Q&A with Brad Miller

A few years ago I was invited by a fellow Muscular Dystrophy blogger Dan, who thought it would be a great idea to swap questions with another person with Becker Muscular Dystrophy. In an effort to help add some additional perspective and dive into some of the thoughts those of us with Muscular Dystrophy have. I thought it might be a great idea to revisit this posting since a few years have past and maybe some of my answers have changed. Below you will find my latest answers to a few questions Dan asked me related to what it's like living with Muscular Dystrophy.

1. When you look at someone in a wheelchair, what do you see or how does it make you feel?

When I now see someone in a wheelchair I see someone who simply lives life as best they can. Over the last few years I have had the privilege of meeting many people who use wheelchairs full-time and they seem just fine. Best of all many are not limited by the fact that they use one everyday. What I also see freedom, as I have learned that for those with walking limitations using a wheelchair allows them to avoid becoming fatigued. Best of all it also takes away all the worries and fears of suffering a fall, something those of us with Becker's Muscular Dystrophy get used to dealing with from a young age.

 So I also think of myself, as seeing some in a wheelchair reminds me that it may be something I will be in need of one day. What I really see change, a new way of life, what I see is my future. To be completely honest at times I do wonder how it might affect my life. I start to think of my limited income and wonder how I might afford a fully accessible home or vehicle. But I do have a plan for that - it's called playing the lottery.   

2. Pretend the universe split in two the moment you found out you had MD and there were now two of you living in parallel universes. The current you has muscular dystrophy and the other does not. What would the “you” that didn’t have MD be doing right now? Is there anything the real you has done/learned/experienced that your other “you” would never have?

If I didn’t have MD right now I would quite possibly be a very successful professional race car driver, something I believe I would have been able to peruse if I didn’t have Muscular Dystrophy. It's actually something to this day I still feel I was born to do. But life took me in a different direction when I was diagnosed with Muscular Dystrophy at age 10. Sure I may have been able to do many different things if I didn't have MD, but I know without it I might not be the same person I am today.

 I truly hope that I would have gone through the same experiences (except for being bullied) and learned all the same lessons even if I was never diagnosed with Muscular Dystrophy. After all not having MD wouldn't have changed the area I grew up in or my up bringing. I believe that no matter what I would have learned and experienced all the same things - the main lessons being caring for others and the importance of family and friends. 

 3. What’s a feeling or worry you have that you think you might never “get over” and why not?

These days I tend to worry about the day when I can no longer climb stairs and what effect it will have on my ability to visit with family and friends. In recent years stairs have really become my worst enemy since as they create all sorts of issues for me - especially when I am invited over to someone's home. I really hate the fact that my issue with stairs may start limiting my ability to socialize.

This is an issue that I worry about all the time and know I will never get over this issue especially if it keeps me from spending my time with friends and family. It's the main reason why I wish I lived in a fully accessible home that was all on one level. Right now this is just a dream but it would allow me to invite family and friends over, resulting in my issues with stairs being a thing of the past. So maybe my biggest fear is not being able to hang out with my family and friends.  

4. Do you have any other in-person (i.e. not online) friends with disabilities — MD or otherwise? If so, what have you learned from them?

I do have a people in my life who I know who also have disabilities. What I have learned from them is that it is good to try and enjoy your life to the fullest. To make the most of every opportunity and also that a great sense of humor goes a long way. Also that it is better to focus on the positive in life.

5. Pretend you could be a member of any TV family (e.g. The Goldbergs, Everybody Loves Raymond, etc) which would you want to be a member of and why?

I would love to be a member of The Goldbergs Family mainly due to the fact that is set in the eighties. Being able to watch a show that brings back memories of your childhood is a lot of fun. They seem like a fun family who knows how to have a good time. Plus life was so much simpler in the 80's if I could go back in time I would. I guess you can tell I really loved growing up in the 80's. That's why the Goldbergs are the TV family for me.

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