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.

Tuesday, May 19, 2009

Hawaii Days

I was so nervous to make this trip. So far, I am handling it, with the constant help of my 'boys.' The airplane trip was doable--United put me in row 40 of a huge plane and it was just about impossible to drag me in an aisle chair that far back. Talk about humiliating. Thank goodness the airport transport folks were professional and didn't make any comment about my big butt. My husband assures me that the aisle was so narrow--most people's behinds wouldn't have fit. And, I have the bruises to support his theory.
I am trying to savor every moment and not let the pain and fatigue interfere. That effort, in itself, is tiring. Yesterday we got to a restaurant just before it was closing. It was hot, I felt pressured and with the heat my cognitive abilities dropped. So, I snapped and barked at my son. I hate it when this illness seems to take over my personality.
We are going to a beach with a sand wheelchair today -- it is exciting to think about putting my feet in the ocean. A rare treat that I've only accomplished twice in the past 8 years. Watching my son boogie board in the water will be worth any obstacles we encounter.
So, short and sweet--Hawaii is more than worth the effort. I can't help but think this may be my last trip of this scale. But, who knows, I seem to be keeping it all together and having a wonderful vacation in spite of the challenges. Aloha