I Miss My Fingers

(Someone asked me to write about the value of our fingers and what it means to lose them.)

My fingers stopped working three years ago. I could grasp a steering wheel and hold a fork with an overhand grip, but I had neither the strength nor the dexterity in my fingers to type. This was bad news because I worked as a hospice chaplain and needed to enter notes into a computer for the rest of the hospice team to read.

The loss of my fingers, which is essentially what happened, came about because I was diagnosed with ALS (Lou Gehrig's disease) in February 2007. It attacks the long nerve cells, called "motor neurons," that lead to the voluntary muscles. When the nerves die, so do the muscles they control. The result is paralysis, leading to a locked-in state in which the victim cannot move a muscle but is mentally alert. The locked-in ALS patient feels to a maddening degree the itch that cannot be scratched and the cramped muscle that cannot be moved but is helpless to do anything about it.

My inability to type did not come unexpectedly. The first symptom of my illness came on a fall morning in 2006 when I could not hold a pen well enough to write my name. I was sitting in a hospice staff meeting and I had to ask a coworker to write my name on the sign-in sheet. Looking back, I realize I had ignored other symptoms, but this one I could not ignore. So it came as no surprise when I could no longer type, but it concerned me. It was vital that I recorded my visits with patients. As we used to say, "If it is not recorded, it never happened."

At the time, my difficulty walking was foremost in my mind. I went from a cane to a walker to a wheelchair in less than a year. The loss of the use of my fingers was just as devastating. Not only could I not type but eventually I could not feed myself. I could not hold my daughter's hand. I could not sign my name except with an "X." I could not turn the pages in a book. I could not button my shirt or zip my pants. I could not shave, brush my teeth, or brush my hair. I could not point at something I needed. I could not push the buttons on a phone to speak to a friend or to call for help. As it has been noted many times, we do not fully appreciate what we have until we lose it.

Yet, here I sit, typing this article with ease. I have an amazing and free computer program that helps me called "Dasher." It is a product of the Inference Group in England. I also use a head mouse that allows me to move the cursor with head motion. I glide the cursor over the letters I want to type and they appear on top of the screen in the sentences I create. Dasher "remembers" the words I have typed often and, along with other word prediction features, I type more rapidly and with fewer errors than I did the old standard way. It is surprisingly easy to use and I learned it quickly. So long as I can move my head and squeeze a mouse with the remaining strength in my right hand, I will be able to communicate. When these abilities are gone, I will have to move to a much slower system.

Our fingers can move mountains with the stroke of a pen, seal a friendship with a handshake, signal "V for Victory" or a peace sign, and when intertwined with other fingers can express love. They are a gift from God. Let us not forget the miracles they can do.

(Tom Swift has written an article about living with ALS for the Asheville, North Carolina Citizen-Times newspaper for the last four years.  He lives in a nursing home in East Flat Rock, North Carolina up the road from a community college and across the street from a llama farm.)