I started writing this blog as a way to share my personal experiences and struggles with Ataxia everyday. I have joked about various situations that have come up, and referred to my handicap, among other ways, as an unwanted guest. I have said before that the reason that I try to find humor in my reality is so that I won't find the ugliness. I laugh, to keep from crying, and I try to stay on the positive side so that I won't stumble into the negative. With that being said, I also have to acknowledge that there are still days of intense frustration, anger, and an almost overwhelming sadness. When this happens, and I find myself in that place, I remind myself of some of the things which I have written in the past. I write with complete conviction, but also with the knowledge that along the way I am also learning how to live a life that has been physically compromised. And so I went back to an earlier writing, making the connection again, both with where I'd been, and where I am right now. It once more gave me insight and encouragement. It is my hope that it does for you as well. The following are the four ways in which I have come to look at, and live with, my Ataxia and again I would like to share them with you.
1. Acceptance. I was diagnosed thirteen 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 Spinocerebellar 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 unnecessary injuries, that was when I had to stop and reevaluate. I gave myself permission 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 very important 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 have stated in an earlier 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 physically wiping me out but at least it was providing constant exercise. 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 keep at 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 question that may come up in your own battle, and receive advice, encouragement, and/or 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 for support.
As I continue to battle, I do so while striving to live a life that on hand is based in reality, but on the other is not stopped or discouraged by my physical trials. Each day brings with it a new chance to live a life that is grounded in the positive. A new chance to take stock of your surroundings and make a choice to focus on the good things in your life. This is what I choose to do, despite the physical challenges that Ataxia brings. I invite you to live this kind of life also. Peace, my friends.
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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