There is a phenomenon that happens to all of us as we get older. We discover that the giants of this world and the things that we perceived, when we were younger, to be larger than life were in fact of normal size or even a little on the small side. Remember the hamburger when you were seven that was of epic proportions, the one that you could never finish, and that has now reached legendary status? Present day? You can easily eat that exact same hamburger in two or three bites, during which you are contemplating ordering another. That huge dessert at that one famous restaurant you went to as a kid, you know....the one that you would always brag about to all of your friends? You go back to that very restaurant years later only to discover that what you thought was the mega-sized ultimate chocolate dessert was really just a 2 ounce dish of ice cream off the kid's menu. This situation also happens in the realm of my Ataxia, only in reverse. As a kid there were things that I could easily do....things that have now grown to epic proportions. I could, with assurance, step off a four inch curb without the aid of some major mountain climbing equipment or the need for repelling rope. I could run up and down stairs, sometimes even taking two or three at a time, without the need to reassure myself that I have a life insurance policy in case the whole thing goes south on me.
There is, however, also a second way this whole time displacement, or size discrepancy thing works in my life. In 2012 I was let go from my full time job because of the advancement of my condition. The job was physically demanding on me and took a toll, but it kept me active and the concern became that I would degenerate faster if I didn't find a way to exercise my muscles and keep them engaged. Sitting around all day and watching television just wasn't going to cut it, even if I was repetitively lifting a fork from a plate of cake to my mouth, (I even tried a second piece of cake, but it still was not enough, if you can believe that)! So, I decided to begin a walking routine and started out by walking a distance of 5 to 7 miles a day. That was just two summers ago, and currently I'm lucky to walk 3 miles a day. Oh, I know that it's good that I'm still moving, but it really doesn't work very well to remember the good ol' days when really the good ol' days were just 2 years ago! The older I get and the longer I walk with Ataxia,(the pun was intended), the shorter, it seems, become the spaces in the time displacements.
I have been faced with the reality of my physical limitations for several years now, and as odd or funny as this may seem, I still have moments when my mind will assess an obstacle or problem in front of me, such as a set of stairs, and thinks that it will be of no consequence. Probably 99.90 percent of the time I am fully aware of my stellar lack of any balance, but it's that .10 percent of my mind that just won't play nice. Just the other day Melissa and I were walking through a park that was surrounded by a golf course, and I found myself thinking that it wouldn't be such a difficult thing to fluidly swing a club again like I did when I was 17. In my fantasy world I could even see it.....the young kid hitting a beautiful shot straight down the fairway. After approximately 2 seconds the .10 percent of fantasy-brain was pushed aside by the other 99.90 percent of my thinking-in-the-real-world-brain, and I now clearly see the 51-year old man who would never make it to even hitting the ball because halfway through the swing he would lose his balance, do a new dance called the S.S.D, or Spastic Salsa Dance, and follow it up by throwing himself in a heap to the ground. Or there have been times when I will get the sudden impression that I can run, or at least jog slowly. I used to be a runner, it shouldn't be to hard, my leg muscles should remember this and know what to do, right? Uh, yeah, there like, "What's this thing called.....running? Nope, sorry, don't believe we've ever heard of it before or ever had the pleasure."
Some of you reading this will understand the phenomenon, or discrepancies that I write about, but I will attempt to describe it another way. About a year before I was officially diagnosed I was working at a large shop that made cabinet doors. I worked on a shaper and in a accident had about half an inch taken off my right middle finger. It was very strange, but my mind kept telling me to use my right hand like I had always done in the past. This was not going to work though because an important part of the finger was now gone. Never before had I realized or even thought about how important the tip of my finger was. I had been relying on it to feel, balance, and help grip things. Just a half inch! That's all, and now I had to re-train my brain to function without it. So it goes with balance, I never really stopped to consider all the things that were possible because of it, until it was gone.
So, it would seem that there will always be discrepancies and struggles with time displacement, but that just means that now I will have to always be on the lookout for new ways to approach life's little challenges.
This and all the pictures that have been a part of the blog, My Life-With Ataxia Along For The Ride have been taken by, and used with compliments, from Melissa Wolfer. |
Jason, thanks for this post. I am Cole's wife. You used to work with him. I identify with a lot that you said. I blog my journey too. It's a hard balance to deal with health issues but still be dependable and have a full life. I succeed most the time, but my bad days will make be sometimes forget about the good days. Thanks again for this post, I will look forward to reading more.
ReplyDeleteTHANK YOU, MY FRIEND, IT IS THE 'REMEMBERING' HOW TO WRITE...BLESS YOU AND MELISSA FOR STICKING BY YOU.
ReplyDeleteI posted once but I am not sure what happened. I did it from my phone and I do not think it worked. Thank you for sharing your very personal struggle, Jason. You do it with grace and humor. It sure makes me thankful for what I do have. We all have struggles in our lives, but it is all about how we deal with it. Thanks, Jason!
ReplyDeleteThank you for allowing me to read. I have wanted to write about my journey, struggles and all, I lack the words or what to say. I was diagnosed 10+ years ago with an unknown type. I applaud you in your exercise routine, I try as much as I can, however, a lung/breathing condition limits everything. Keep it up :).
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