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.


Stuff could always be worse said...

Do what you can and enjoy the next trip. Glad you liked Hawaii

Herrad said...

Hi Janine,

Seize the moment and enjoy everything there is to enjoy.

If there is any reason for a party have one.