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| Yep, that's me...having a laugh at my own expense. |
Over the past thirteen years, I have been in a give-and-take relationship with Ataxia, (I give....I and give....and I give some more, and it takes...and it takes.... and it takes some more). It has been a relationship that can be defined as, "close and personal friend", but with the exclusion of the, "friend-part", at the end of that statement.
What I mean is that at a party, I wouldn't introduce the obvious elephant in the room as, "a close and personal friend of mine". He showed up at my door one day, (Ataxia), thirteen years ago.....just like that, not even a phone call, a text, a letter, a fax, a tweet, or even a smoke signal first to announce his impending arrival, and decided that he liked it so much here that he has no plans to ever leave my side......lucky me".
I exaggerated, however, when I alluded to the fact that my life with Spinocerebellar Ataxia is one that is trapped in a relationship that is marked by a very one-sided state of give-and-take. There are plenty of benefits, or physical things that I have been able to take away from this sometimes volatile association.
For example, I gave up my right to walk in a straight line, and in return I took the abiliity to collect various painful, and on occasion, unique bruises. I forfeited the right to manipulate tools, like screwdrivers, and hammers. I've lost the ability to hang on to small items, such as screws, nails, and thumbtacks, but from all of this I have gained the pleasure of experiencing differing degrees of frustration as I have dropped, burned, cut, and stumbled upon other numerous and creative applications for the band-aid.
It would be misleading, though, for me to just leave you with the impression that the last thirteen years have only been about struggles, and finding new ways to injure myself. Because the truth is that I believe that my SCA has made me a stronger, more confident person. Yes, it is true that more often than not my Ataxia is not a very nice guy, and I have a strong confidence that trying to descend a staircase without holding on to the rails could, and would, not end well.
However, that is not the kind of confidence to which I am referring to. I am talking about the kind of strength and confidence that makes it okay to be who I am. Some people may see me and not understand, or seek to explain my behaviors in another way....and more than likely in a way that is completely wrong....but I have become reconciled with this reality. I will give you a quick example of what I mean.
In the picture above, I am pointing and laughing at myself. This picture was not two separate pictures that were photo-shopped together, but rather they are one picture, taken as a panoramic with Melissa's cell phone. She started the picture with me standing and pointing, and once the camera had moved past me, I circled around behind her, lay done on the ground, and became the second part of the picture. When I, with very little effort I might add, threw myself to the ground, there happened to be a group walking by my family who seemed to think, (by the looks they were exchanging with one another), that I was having some sort of problem. They also couldn't quite figure out why my family was standing by and laughing at the situation, when clearly I was experiencing some kind of episode or medical issue. Even after I stood up and they had preceded past us quite a ways, they were still turning around and trying to assess the situation.
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| See the stick that I am holding on to? Yah...it's the only reason I can bend over without toppling over! |
Over the past thirteen years SCA has also been teaching me some lessons about my life. One of those is that I need to keep a hold of some of the things in my life loosely, and to be prepared to let them go. I had to lose a lot, including my freedom to hop in a car, (or to do any kind of hopping, really), and drive wherever I may need to at any time.
Another lesson that I have learned during this journey is that I didn't just simply lose some of the abilities in my life, like driving. I gained things, like spending more time with those I love, as they drive me to various destinations. But Ataxia has also reinforced, or enhanced certain aspects of my life. Say, like my ability to have a good laugh at myself. I don't know about your situation, my friends, but you have to admit that Ataxia can, and often does, get us into some pretty unique and humorous situations. I will be honest here, and say that, yes....sometimes I get rather frustrated with myself. Most of the time though? I just have to laugh at myself, and the predicaments that I get myself into.
For me, the everyday presence of an SCA has become one of perspective within the reality of a neurological disease. My perspective, or to simply wish that a neurological disease was not a part of my life, does not change the very real presence of Ataxia. But my perspective does have a lot of baring on some of the ways that Ataxia tries to affect, or shape my life.
Everything about SCA, I believe, is based on, and reflected by, the way I look at it. Ataxia is a serious thing, and I will never under estimate it, or make light of it in someone else's life. But I WILL continue to laugh at myself, mainly so that Ataxia will never be permitted to gain the upper hand, or the last laugh in my life.
