Going in to see a Neurologist is, in a lot of ways, like taking your car to the mechanics. You can't just give the mechanic your car key and say, "The car won't go." They need specifics, something along the lines of, "I'm starting to backfire and stutter....uh, I mean the car's exhaust is starting to backfire and stutter when I creep along or go slower than five miles an hour. Which seems to be happening a lot more lately, uh, the creeping along thing, I mean." Actually the more I think about it, the more similarities I see between my visits to the Doctor and my visits to the Mechanics. I'm also beginning to have a clearer understanding of why the car is starting to groan in protest whenever I step on the gas, asking for the extra power needed to successfully get to the other side of the speed bump that's so smugly trying to block my path. My zero-to-sixty has also changed. No longer do I hit the ground running. Oh, I still hit the ground,(inevitably and more often than I used to), but my zero-to-sixty is now closer to zero-to...... all day.
If I let my imagination go, I can begin to see that there are a lot of parallels between the workings of an automobile and my physical state. There are times when the brakes squeak, the gas mileage goes down, and the vent only blows hot air. The tires wear out, the upholstery begins to wear thin and rip, and the new car smell is nothing more than a memory of a distant memory. Of course, there is also the complaint that the car just does not handle the way it used to. Some of this is because the car is getting older and has been around the block a few times. To be entirely truthful, though, it never was a really great car, from the very beginning. Nothing sleek and sporty, like a Porsche, Corvette, or Lamborghini. Never a muscle car, like a Mustang, Camaro, or Charger. I was always closer in resemblance to a Maverick, Volkswagon Bug, or AMC Pacer. There is also some likeness to a Chevy Chevette that Melissa and I owned when we were first married. We traded it in after about a year, and one of the dealership lot attendants was a friend that Melissa had known from High School. We asked him later about that car, and he told us that they couldn't even get the thing in reverse to get it around to the back of the building! That's the way my Ataxia is......somethings work and some things don't. My brain is like a clutch, sometimes it engages, and sometimes...." son, it looks like you've burned up your clutch"!
Well, if I'm going to compare myself and Ataxia to a car, then the next obvious subject would be to talk about breakdowns. So, there I am, stuck, and after a thorough examination of the facts, conclude that the car won't go. So what do I do? Call a tow truck. In my time, I have experienced two kinds of trucks. One reminds me of my walker because the car is only half lifted up, leaving two wheels still engaging the ground, and basically, it just rolls along behind the truck. The other method is the wheelchair of the towing world because the whole car is pulled up onto a flatbed truck and now has movement, just on top of another vehicle.
Fortunately, as with a car, there are routine maintenance steps that can be taken. No, it will not convert my Volkswagen Bug into a Porsche, but it will keep me on the road. Ataxia has many forms, and no two people are entirely affected the same. However, there are similarities to some of what we deal with because of this Neurological disease/condition, such as, issues with balance, difficulty swallowing, writing, or talking. There are also different ways that people have found to deal or survive in the face of their personal struggle with this condition, or disease. I would like to share with you the four ways in which I have come to look at and live with, my Ataxia. I have said these before, but as a way of reminding myself, I will repeat them.
1. Acceptance. I was diagnosed eleven years ago at the age of 38. It came as quite a shock, and although I acknowledged that the Doctor was talking to me, the whole thing had a nightmarish quality to it. Honestly, I think I lived in denial for quite a while. I would explain to family and friends what Cerebellar Ataxia was and talk about my MRI openly, and on the outside, I looked like I was taking it well, but inside I was a jumble of raging emotions. Anger, frustration, sadness, and confusion. I really just wanted everything to be like I had never even gotten the news and continued to try and do everything on my own. But when I began to see the changes in myself, that all I was really doing was making things harder for myself and others, and even setting myself up for otherwise completely avoidable injuries, that was when I had to stop and reevaluate. I permitted to be who I am and to embrace the opportunities I had before me that were only there because of my Ataxia.
2. Attitude. Once I accepted the reality of my Ataxia, I quickly made the connection to my disposition. It was one thing to understand my limitations, but it was quite another to be happy IN SPITE OF the current physical reality. I say physical reality because that is what it is. You are free to believe what you want to believe, my friends, but I believe that there is a Spiritual reality where Ataxia will no longer be a part of me. In fact, it is largely the reason why I can laugh in the face of adversity and joke about my daily struggles. The other reasons are because laughter keeps me from crying, and also helps me from making the loved ones around me miserable. I will not live a life that is embittered by struggles, or otherwise. I don't always succeed at having and maintaining a positive attitude, but I will tell you that when I do, my limitations are a little more bearable to live with.
3. Exercise. After my diagnosis in 2003, the one thing I discovered was that it was crucial that I kept moving. My motto soon became," if I don't use it, I'll lose it'. For the first nine years after my diagnosis I worked full-time, so constant movement and exercise weren't a problem. But, I lost that job in 2012, due to the advancement of Ataxia, and as I stated in my last blog, the concern became what I would do and how I would keep from degenerating faster. The job that I was doing at the time was physically demanding and wiping me out, but at least it was providing constant exercise for me. So at that point, I began a daily walking regime. I continued doing as many things around the house as possible and also began to volunteer at different places as a way to stay active. My motto is still the same, and I continue to do whatever I can and will do it until I can't do it anymore.
4. Support. I cannot accurately describe to you how big of a role this has played in my life or how vital I believe support to be. For the first nine years of my personal struggle with Ataxia, I faced it with the love and support of family, but I did not know anyone else like me. When I reached out and found a support group, I was amazed, and it really felt good to be with other people who knew my struggles, not because they were sympathizing with me, but because they were living in the same reality as I was. It was an inspiring time for me, and I began to seek out any avenue that I could that would put me in touch with others whose struggle is like mine. I now have friends all over, not just the states, but the world. I can't say for sure why this helps, but somehow it just does. It also is a very encouraging thing to be able to ask a question about your symptoms, or about various medicines, or any other general issue that may come up in your battle, and receive advice, encouragement, and support, sometimes in a humorous way. And the beauty of it all is that there is never a dumb question. Just friendship and unity in the knowledge that we all have had our lives disrupted by a variation of the same unwanted guest. Any advice I have for someone struggling would be to find a source of support.
Our struggle is not easy my friends, but I want to encourage you all, whatever stage you're at to continue to fight, grab any hope you can and hang on, and know that you are not alone. My best to all of you.
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