tonight i am thinking of my brother, Bill
and how i miss him from this life
it is two months today since he has gone, leaving me with no fill
tears are falling and my heart feels cut like a knife
then i happened upon an old Inuit tale
that said that perhaps the stars are not stars
and i became still and very pale
but i read on and heard the stars are openings from afar
where the love of our lost ones pours through
their light is shining upon us to let us know that they are smiling
and we never have to say adieu
they are tiptoeing through the night sky dancing
My brother, Bill, was fifteen months younger than myself. He died less than a month before his 62nd birthday. He died from myotonic dystrophy, a genetic disorder that is much like muscular dystrophy. The disease is characterized by muscle weakness and a gradual death of nerve cells within the body organs. With my brother, his speech became more and more slurred, then he could no longer swallow, as the epiglottis no longer functioned, and the food would travel down his windpipe, rather than the alimentary canal. This resulted in respiratory problems and pneumonia. He eventually chose to be tube-fed. He had great difficulty walking, as his muscles would contract and then not release. Then his ability to breathe lessened and he was nearing the need for a ventilator, but his heart gave out before that could be placed.
Bill was a very unassuming individual. He went about his life quietly as he matured. When we were kids, he would always play the Catholic priest and give us Stark candy circles for communion. He had a talent for drawing that was curtailed with his muscle degeneration. He was kind and helpful to others and would often give a room to someone who needed a place to stay. Bill did not advertise his generous nature, but if he saw that you needed something, one day it would appear in your mailbox—as he did for me after a visit, and noticed my cooking utensils were dull and few. A week after he visited, a block of sharpened knives appeared at my front door! I have heard similar tales of his generosity.
This disease is so strange…when we were growing up together, it was not noticeable, except for his tiredness during the day, and his inability to sleep at night. This turns out to be a symptom of the disease. Bill enjoyed elementary and high school–and was in the US Army in the paratrooper division when the disease manifested itself. Around the age of 27, the myotonic dystrophy ballooned! His walking and speech became increasingly difficult, and he was honorably discharged from the Army.
He eventually moved to Missouri and then Kansas, where he met Harriette, his wife of the last ten years. I was happy for him that he found someone he could love and who loved him. He deserved that in this life.
I was able to see him in January in Kansas, as he had to go to a nursing facility. My older brother, Claude, and his wife, Kerri, were kind enough to take me with them to visit him for a week. But you know, that week was not enough! What amazed me so, was his calm way of preparing everything so that Harriette would not have difficulty in taking over once he left us. He went about it so diligently and without any pompous noise. He just did what he had do in such a matter-of-fact manner. He didn’t worry about leaving or fear his death—his only concern was to make things easier for his wife. Even in his last days, he was so giving. I wonder if I could be like that!
I do miss him and guess that is just one more person I will have to look forward to speaking to when I am in that next place…nevertheless, the tears are many and often…still….tears in between the tears.
We also lost our sister, Barbara, to the disease three years ago. There are 16 people among my siblings and first cousins who have the disease.
http://www.genome.gov/25521207 Learning About Myotonic Dystrophy