The Unwanted Guest

here is a link to the audio version, in case you would rather listen to this blog: https://www.youtube.com/watch?v=aDt4pfl9v4c

      

     Ataxia showed up in my life like a loud, obnoxious party crasher. It barged its way in, interrupting the peaceful proceedings, appearing to be already half drunk like it was just gracing my festivities after having been previously at a different event. It was an uninvited presence, not only as a guest that can eventually be pushed out the door, but it brought with it all its baggage, and I knew then that it meant to stay and that this was a permanent situation, (and I suspect it slipped something into my drink). I was not consulted, was never asked if it would be okay if Ataxia came over, and not involved in any long-range planning meetings on the subject. No, my life was not perfect, but it was, however, without serious physical challenges. I never had great balance or the adventurous spirit that drives many people. But I was happy. I was married, (just recently celebrated our twenty-fifth anniversary), and had three great kids. And then suddenly one day, there it is, Ataxia. The general atmosphere of the whole party changed at that moment because the baggage that Ataxia brought with it was all negative. The diagnosis was negative, the outlook was negative, and to my recollection, the diagnosing Neurologist was negative.

     When it showed up in my life, it also brought lots of stress, anxieties, and doubts. Mostly because I had never heard of Ataxia, didn't know anyone with Ataxia, and didn't foresee a brilliant future. Now, as I sit on 11-plus years of dealing with this unruly-guest-turned-permanent-resident, I can say with certainty three things. Three things that, really, are pretty closely related to each other but that have helped me remain positive and have kept me on track. To know what they are, all you have to do is send me a blank, but signed, check.........Sorry, couldn't resist......it doesn't have to be blank, any amount between $20 and $25 will be just fine. What? Oh, okay, I'll give them to you for free.

#1.  A sense of humor.
     This one came relatively natural to me; once I got past the initial negativity that Ataxia brought with it. That and when I realized that other people pay good money to feel for a short time the way I feel pretty much all the time. I don't drink very often or to excess, and I've never actually gotten into the nightclub scene. However, on occasion, I've felt like I am vigorously being shaken in a big metal tube, poured into a glass container, and skewered by a giant wooden stake that also has a green olive impaled on it. Not enough can be said about the healing effects of laughter. No, it's true that humor cannot and does not entirely and miraculously cure all ills, but a good laugh at an appropriate moment can be a balm to the soul, bring perspective, and take you to a place where you can breathe a little easier. I have found that laughter is also a great divider of barriers and can help bring walls down. It can smooth a tense situation, shed light on a dark moment, and/or bring better understanding to a scary or confusing time. I have found in my own life that by telling a joke or sharing a humorous story, I tend to feel more relaxed and comfortable. Humor can rally people together in closer bonds as they begin to identify with one another and realize they experience things that are a little more universal than they thought. And so, the reason I put humor as number 1 is because this was one of the first lessons I learned about myself. That being able to laugh in the face of my Ataxia somehow put me in charge, not the other way around. With my diagnoses came the knowledge that I could either laugh at myself and remain positive, or I could cry and make myself and those around me miserable, which would accomplish absolutely nothing.

#2.  Maintain, Maintain, Maintain A Positive Attitude.
     To me, this one has many moving parts or can be entirely different as it varies between diverse personalities and situations. How this may all come together and look for others is going to be different than how it seems for me. From the very beginning of my journey with Ataxia, my motto or theme has been to do whatever I can for as long as I can.  It may take me longer to do something like, well....pretty much most things,( it would be faster to list the abilities that are not affected).  I never use my disability as an excuse not to do something, but I do believe that reality is reality and that I can't keep trying a physical exercise, skill, or motion that I know is just not there anymore.  I gave up trying to ride a bike back in two-thousand and three upon realizing that I couldn't get very far, when, after about two seconds of wobbling like a giant jello mold, I would follow it up by immediately falling over as poetically artful as a drunk coming off a three-day bender. As of the present, I am able to walk, so as much as possible I use this ability. I lost my full-time job in two-thousand and twelve and started a daily ritual of walking and at that point was doing between five and seven miles a day. Now? I'm down to three-and-a-half and feeling completely wiped out after. Sure, I may not enter any speed walking tournaments in the near future, (or ever), but the point is that I'm still out there. This seems to be a universal approach by many people who I have met and talked with, but I want to encourage that person who may be looking at a recent appearance of Ataxia or other physical ailment or condition. Our situation will be made a little more manageable if we hit it head on with a smile instead of a frown, and continue to focus and use those strengths or abilities we still have.

#3. 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 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 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 party crashed by a variation of the same unwanted guest.


     In the beginning, I said that these three things work together. Humor, attitude, and support. You may see it another way, but in my life, pretty much everything can be, and is, reflected by these three.