Progress…Is It Good or Bad?

I have a music education degree from James Madison University. At approximately 20, I began to notice many aspects of my life begin to decline: the first thing I noticed was my walking stability. At first, I was able to walk with no assistance, but it would have appeared to casual observers that I was drunk. By age 30, I got my first wheelchair, but even then, I only used it when I truly needed it and I was able to carry it around in the trunk of my car and only get it out if needed. Then at about age 40, I began to need to use a wheelchair full-time and I also had to stop driving. Now that I’m almost 50, I notice that the progression (or, I guess, recession) of my walking/standing ability seems to be declining at a faster rate.

Along with a wheelchair, I started using a powered scooter when I was 44. I am still able to transfer myself fairly easily as long as there is something to hold on to, so fortunately, I can still sit on the couch to watch television, sit in a chair to read, transfer to a bench in the shower and dress and undress myself. I’m unsure of how long this will be the case, but this is my current condition and I’m not thinking about when the progression of my disability will eliminate my ability to independently transfer.

So, yes, my disability is progressive (meaning it will get worse over time) and as I said earlier there are many different aspects of my life that are affected by my disability (Friedreich’s Ataxia or FA): muscle coordination, speaking ability, hearing ability, et al.

Making “progress” is usually seen as a positive thing. In fact, Merriam-Webster.com defines it as gradual betterment. When I say my FA is progressive, I’m not usually talking about its “gradual betterment,” actually that would be “never” and “not usually.”

While I have become used to the terms “Progressive” as it applies to FA (along with my family members, wife and those who know me well), but oftentimes words can have different meanings to different people. Certainly, a lesson to me, but something that is worth raising as a point of awareness. Simply put, words can mean very different things in multiple contexts.