Tuesday, May 26, 2009
Fear & Hope: Siamese Twins in the Dance that is MS
So, I did it, I set aside my fear and took a vacation. Away from my support system, my doctors, my comfie bed, and into the unknown. Leaving behind my electric wheelchair--airlines just can't seem to transport them, and accepting the confinement of a manual chair. So many unknowns: would the hotel room be accessible; could I deal with airlines; would my health take a downturn.
One of the hardest thing about living with MS is the fear. Is today the day I will lose my vision? Can I swallow this bite of food? Will this pain get better or worse? From moment to moment, day to day, my symptoms and abilities change--the only certainty is that the MS will worsen.
Surprisingly, hope is harder to live with than fear. Fear is a green skinned giant: to be faced, overcome, and wrestled with. Hope is the wait for Christmas morning, the first paycheck after a raise, or the plus sign on a pregnancy test.
Hawaii was great--I swam in the ocean with son for the first time in years. My symptoms were manageable, and the airlines weren't any worse than usual. So, in skips hope--could I do this again? My husband and I dream of possible locations: camping in eastern Oregon, Moorea, or a cruise. Suddenly, hope is in the air. And, some part of me knows what a dangerous element it is to play with.
I know that MS is unrelenting and that my symptoms are worse than six months, or one year, or five years ago. I am caught in the unbreakable grip of a tenacious illness. But I don't know when or what will be the next ability to go
It is foolish to hope that I might take tango lessons--I haven't walked independently in years. Hope requires an expectation of joy found in the unexpected. Can I cope with the disappointment when my hopes are dashed. I dare not give up on hope, or conquer the fear: I need both to temper and polish my dreams.
Posted by Janine