After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Irony: My Ski Lounger Experience

Irony: My Ski Lounger Experience

It’s amazing how time and circumstances can change ones opinion. I don't choose to live in regret, but I do have great appreciation for irony. Since I live in the North East of the U.S. where we just had snow on the second day of spring, I felt it was doubly appropriate to share.

For instance, when I was 14, six months before I lost all movement, before my world became limited, I was on a winter holiday with my family, in which skiing was the center objective. I, at the time, was not a fan of skiing. Never mind the fact that I had only ever been skiing once when I was six years old; to put it simply, I felt it was not for me.

Staying home while my dad and sister hit the slopes was not an option either. So, in anticipation of the upcoming trip, I had already determined, pitched, and sold my dad on the role I would dutifully play: I would be a “lounger”.

Yes, as in ski lodge lounger.

Think that's not essential? Who else can hold all the coats, bags and everything that you don't want to hang on to when you’re whipping down the hill?Also saving one or two locker fees..latte, anyone? There was always a table and chairs reserved whenever they came in. Whatever they needed, it was all right there for their convenience.

What did I ask for such excellent diligence and duty? (Yes, I really was pleased with myself for how I pitched this.) I simply asked my dad to take me to a book store before this ski adventure. With a stack of new books, I was as happy as a cat in a sunspot.

At the time, I took it even further, telling my friends I wished I had a zip-up leg cast. My theory was then I would have everything brought to me and would get pitying to understanding glances from passer-by rather than the incredulous glances of, I cant believe she's choosing to be inside, reading, over skiing.

In hindsight, I wish I could have told myself to give skiing another try. I wish I had never said such a glib remark about wanting to be waited on; even though it was intended for harmless fun, I cannot look back on it that way, having since lived in the extreme of physical dependency. (Yet, I do have a macabre sense of humor and think a zip-up cast is somewhat brilliant.)

I would have had to know the future to have been convinced to try going down a bunny slope on two narrow pieces of wood…Snowmobiling was my winter pleasure at the time. If I had been pushed more to ski, I probably would have let my resentment over ride the experience. And yet, I still wish I had tried, so maybe I could better imagine what it was like, have the story in my filing cabinet of memories.

The real irony, is that I would be a much better skier today then I would have been back then, (provided I actually had muscle and body that would function correctly during activity, of course). The reason is because I have learned how to watch other people move, how to know what muscles to use, and have watched it enough on TV to know how it’s done.

That might sound arrogant, but it’s not intended to be. In my opinion, it’s just irony.

And if you’re wondering, I do, 100%, have schemes of being pulled in a big round float (like for water), where I can be lying down flat-the angle my body prefers, behind a snow mobile one day…That is, once I meet someone with a snowmobile, and can convince my mother that it is, absolutely, without a doubt, a great thing for me to do!

The Crux of The Matter

The Crux of The Matter

The Woman Who Changed My Life

The Woman Who Changed My Life