Me and My Death Panel

The year was 2004. A fortune cookie told me that in this even numbered year it was to be filled with goodness, harmony and prosperity. That was the year my mother-in-law moved in, John Kerry lost the election and I was diagnosed with ALS, often referred to as Lou Gehrig's disease. This was also the year that I gave up my driving rights because I could no longer turn the ignition key. This terminal illness was a career ender and was no where in my retirement plans. ALS has no cure and the majority only survive two or five years.

The ALS Association contacted me and advised that I should seek a second opinion. During that grueling confirmation I learned that the Association would become my new source of ALS information and support. They also invited me to attend advocacy days in Washington DC. There I would meet 700 other ALS patients and families coping with ALS. This three day gathering represented an array of patients in different stages of this terminal illness. Most were in well-equipped powered chairs, some in manual chairs, and some learning to walk with one or two canes. This conference, while informative of the legislative process, also served as an awakening to the special needs of these patients, and the strain forced on their families.

Four years have passed me by, and ALS has stolen my ability to write, to walk on my own, to feed myself, to bathe myself and to dress for the day. My communication skills have been narrowed to voice recognition, and I have definitely given up on fortune cookies. I have however, found peace with myself and the daily challenge that ALS demands. I also know that as I become my own prisoner stuck in a motionless body, I need to think about the months that lay ahead. That is why I have decided on a living will that includes a DNR order and directions for those placed in charge of my wants. In some cases ALS may not be fatal, but I am content with my notarized wishes should anything odd happen while I battle this evil.

Soon I will require a lift to be hoisted over the toilet then over to the shower. Soon I will require a lift to the hoisted in my wheelchair or to move to and from bed. Soon I may require some special device that allows me to communicate with my caregivers. You could say I pretty much know where this journey is taking me, choices are being minimized. ALS is a serious situation with no solution but I'm prepared for the worst.

"It's the end of the world as we know it and I feel fine" R.E.M.