Here is a link to the audio version of this blog, if you would prefer to listen: www.youtube.com/watch?v=jRRCXqP8z-M
The presence of a Neurological disease in my life has certainly brought some challenges, but let’s be clear, they're not all bad. For example, running with scissors is no longer an option. Mother always told you not to, and now it’s no longer possible. Change a ceiling light? Participate in a barn raising? Run with the bulls in Pamplona Spain? Sorry, wish I could.
And then, some decisions are made for you. Things like, “we would love to have you take thirty to forty-five seconds and fill out this short novel, and could you please write legibly in the tiny spaces provided?", or, “we need to update our medical records and would appreciate if you could write down your complete medical history starting with your first breath.” Uh, no, that’s not happening. I have had nurses, my kids, my wife, and small children who happened to be around fill out personal forms for me, (sure, the later was in crayon, but it got done, so I didn't care).
And then some things are plain old obstacles. An excellent example of this would be the hand dryer in a public restroom. You would think that the eight years spent dancing on a chorus line in Vegas would come in handy here, but the makers of this contraption apparently thought through all the angles and possible scenarios. So I accept my fate and wave my hand back and forth like I’m a deranged conductor before an errant orchestra and after a lengthy musical, am rewarded with the glorious sound of a towel being dispensed. It’s then that I realize that they seriously expect me to dry my hands with a six square-inch, one-ply piece of rice paper. I’m thinking that I could possibly need six or twenty-five more and that it would have been easier to just not use the restroom.
Crowds are another serious obstacle for me. I use the word ''serious'' because most things are one or the other, a challenge or an obstacle. Crowds are both, an extreme overachiever. Put me in a situation or tight quarters with more than one person, and I turn into the person at the party that is so obnoxious and clumsy that EVERYONE is soon uncomfortable, (you know it's time to leave when they begin to put away their breakables and hide their valuable antiques). Sigh….that’s Ataxia. An ever-present stench that’s not really a present. In actuality, it’s a lot like stepping into something that smells atrocious, and that follows you everywhere like buzzards in a desert.
I’ll say one thing, life is never dull, there are always limited options, challenges, and serious obstacles. It’s all how you look at it. Me? I choose to laugh when crying is not an option……….However, I need you to be very clear on something, ATAXIA IS NOT FUNNY, and it has never been, nor will it ever be, my intention to give that impression. I choose to point out and poke fun at those things in my life that have happened BECAUSE of, or that have come OUT OF Ataxia.
I have met some incredibly inspiring and wonderful people, and it warms my heart to know you all and to have the privilege to call you all my friends. Ataxia is a dreaded condition but I choose to laugh, and I invite you all, my dear friends, to laugh with me.
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=jRRCXqP8z-M
And then, some decisions are made for you. Things like, “we would love to have you take thirty to forty-five seconds and fill out this short novel, and could you please write legibly in the tiny spaces provided?", or, “we need to update our medical records and would appreciate if you could write down your complete medical history starting with your first breath.” Uh, no, that’s not happening. I have had nurses, my kids, my wife, and small children who happened to be around fill out personal forms for me, (sure, the later was in crayon, but it got done, so I didn't care).
And then some things are plain old obstacles. An excellent example of this would be the hand dryer in a public restroom. You would think that the eight years spent dancing on a chorus line in Vegas would come in handy here, but the makers of this contraption apparently thought through all the angles and possible scenarios. So I accept my fate and wave my hand back and forth like I’m a deranged conductor before an errant orchestra and after a lengthy musical, am rewarded with the glorious sound of a towel being dispensed. It’s then that I realize that they seriously expect me to dry my hands with a six square-inch, one-ply piece of rice paper. I’m thinking that I could possibly need six or twenty-five more and that it would have been easier to just not use the restroom.
Crowds are another serious obstacle for me. I use the word ''serious'' because most things are one or the other, a challenge or an obstacle. Crowds are both, an extreme overachiever. Put me in a situation or tight quarters with more than one person, and I turn into the person at the party that is so obnoxious and clumsy that EVERYONE is soon uncomfortable, (you know it's time to leave when they begin to put away their breakables and hide their valuable antiques). Sigh….that’s Ataxia. An ever-present stench that’s not really a present. In actuality, it’s a lot like stepping into something that smells atrocious, and that follows you everywhere like buzzards in a desert.
I’ll say one thing, life is never dull, there are always limited options, challenges, and serious obstacles. It’s all how you look at it. Me? I choose to laugh when crying is not an option……….However, I need you to be very clear on something, ATAXIA IS NOT FUNNY, and it has never been, nor will it ever be, my intention to give that impression. I choose to point out and poke fun at those things in my life that have happened BECAUSE of, or that have come OUT OF Ataxia.
This is a link to the audio version of this blog: https://www.youtube.com/watch?v=jRRCXqP8z-M
I relate to everything you say. I'm in all of those situations and it's not funny at all. But you have to make some sound funny or you'd be crying all the time. I know what you're going through and I admire you.
ReplyDeleteAn old Zen proverb is The Obstacle is the path. Thank you Jason we are not alone.
ReplyDelete