Home Again, Home Again

Trying to get an appointment within a reasonable length of time was akin to sweeping the sun off the roof. The intervention of my doctor held no importance. I was just another number in an ocean of numbers. My appointment was four, long months away. Cancellations were rare but I was on the list.

Days and weeks seemed endless. It was harder to stand for any length of time. After two months my legs were becoming weaker. I was fitted with a brace for the foot with the offensive "foot drop". It would allow me to walk with less fear of falling. It fit from the bottom of my foot to mid-calf. I had to buy sneakers a size larger to accommodate the brace. Now the right shoe was too large and two innersoles were needed so it wouldn't flop up and down. Walking was a little easier even though my feet were clunky and strange looking. Shoes with Velcro straps were summarily dismissed as old-lady shoes because that's how they appeared to me. My daughters, years ago, had forbidden me to wear anything with polyester and shoes with Velcro fit into this category in my mind. My husband with great fortitude has to force my foot and brace into the laced sneaker. No complaints from this good man. I know he must love me despite my idiosyncrasies.

In bed at night I feel the fasticulations in my legs which tell me in no uncertain terms that my muscles are dying. I pray they stay only in my legs. One night I felt them in my left arm and hope fades. I walk now like a toddler trying out his legs. Short steps while trying to keep balance. Rising from a chair takes much energy. Exhaustion is part of ALS and care must be taken to rest between activities. I sleep for hours at night and awaken weary...too tired to dress and start the day. Yet there is no giving in or so my mind tells me. I laugh and joke with my children and grandchildren but will suddenly come to tears but hysterical laughter usually follows. This is also symtomatic of ALS.

Hope holds my heart and soul together but is slowly dwindling. I can feel it in the center of my being. Moods swing from high to low and confuses me. I am tired of dancing the waltz of faith and hope. Thoughts of death wrap around my mind. I see it, feel it, live with it. I pray not for the miracle of a cure but for more time with my family. Grief takes hold as I feel how very much I will miss them. It is right and just to grieve for one's life and everyone left behind.