Saturday, April 5, 2008

Jay's story

My husband is a composer, a teacher, an inventor, an artist, a pianist, and an avid prankster. Before ALS attacked his body, laughter permeated from our household, and music could be heard at all hours of the night. I remember initially, the nights he would awaken with horrible cramps in his legs, and rushing to buy calcium tablets thinking it was some kind of vitamin deficiency. I remember that a man who could type 150 wpm on the computer keyboard, and in the next instant sit down and play a mean Rachmonanoff, was suddenly unable to open a ketchup packet. I remember the fear that me gripped when the doctors starting throwing around the acronym "ALS". I had done my research, and I knew what it meant...3 to 5 years, and a horrible piece by piece deterioration of his physical body, ending in death, most likely by suffocation.When we received the news, Jay sat quietly staring. It was Fall of 2005, and by Christmas, he was using a cane. He watched the girls unwrapping their gifts and a deep sadness gripped him. "How many more Christmas's?" he wondered... By April of 2006, he was in a wheelchair, and by the following Fall, he was unable to play his beloved piano. The year 2007 brought the full time use of a breathing device called a Bi-pap machine and a feeding tube and no more of his favorite beef ribs. It was also the end of family dinners...By Christmas 2007, he was experiencing respiratory failure. In January of 2008, Jay was ventilated, effectively taking all of his speech and leaving him completely dependant on a machine for his life.We do not have the funds to hire full time nursing care, so my daughter's and myself have learned the ins and outs of vent care, tube feeding, changing dressings, transferring, and generally caring for a completely paralyzed ventilator dependant person. Some nights, no one sleeps. Often, we hold each other and cry at what these two years have wrought, but most of all, we are grateful. Grateful for each day that we are together and what it has taught us.Jay has never lost his fighting spirit. He has composed an entire children's musical using a software program and one functioning finger. He is quickly learning an eyegaze system, so that when the use of his last remaining finger leaves him, he will still be able to communicate using his eyes and a computer keyboard. He is now composing a string quartet, and completing his 9th time reading through the Bible. He is his daughter's hero, and my beloved. We have been given two years to learn a lot about each other and the love and compassion of those around us. I will not pretend that the suffering and losses are not huge, but I will say, that we have chosen to walk this road with a positive attitude and peace in our hearts. We are human, and we grieve, but we know that something far greater than us is at work here and that the human spirit is far stronger than we think it is.The best outcome, would be a cure. My husband would be able to walk his girls down the aisle on their wedding days. He would see his younger daughter's graduate high school and his older daughter's graduate college. He would grow old with me in the small town we always dreamed of living in together. In my dreams, I see a cure for this disease, and a monster being destroyed. I see people with ravaged bodies whole again... I see my husband.. able to hug me and tell me in his precious voice, that he loves me.TJ ThompsonCALS to Jay Thompson

1 comment:

Don said...


I too have been living with the horrible monster and my heart goes out to your family.

Don from Tennessee