by Patricia Roop Hollinger
“Mrs. Bubel just take your son home and wait for him to die.”
These are the words that resonated in my ears as yet another M.D. gave me this advice. Stephen was born at Methodist Hospital, Houston, Texas in August of 1965. He weighed 4 lbs. 8 oz. The diagnosis was Cytomegalic Inclusion Disease–a viral infection contracted by the mother in the first trimester of pregnancy.
On January 6, 2014 there was yet another meeting with staff members regarding the state of Stephen Bubel’s care, or lack thereof. For you see, Stephen did not die as predicted. His 24/7 care led me to call one of those M.D.’s in desperation.
“Dr. Dutton,” I said, “I need help before either Stephen or myself winds up in an institution.”
My plea was heeded and help was provided. Stephen has lived in an institutional setting ever since. Caring for the Stephen’s of the world does not pay well and is never-ending. Care has ranged from being first class to benign neglect.
“So….what are Stephen’s strengths?” the coordinator asked.
“We have been over this every year,” I said in protest. “Can’t you see that his wheelchair has no footrest…he is unshaven….his hygiene sucks…and you want to know what his strengths are? I want to know when his daily needs are met. Fuck your damn forms.”
Yes, I was “righteously pissed off.”
Another meeting of the minds and words is scheduled for February 10th. I am once again hopeful that his basic needs will be attended to as they have been intermittently over his 48 years. Stephen is unable to walk, talk, or take care of bodily needs unless his mother does become “righteously pissed off.”
Patricia Roop (Bubel) Hollinger was the mother of Michael Bubel who died in 2009 and Stephen Bubel, age 48. She is an ordained minister, pastoral counselor, and LCPC by profession. She is also a cat lover, a voracious reader lover of words, gardener, bird-watcher, and she plays piano and organ. Pat married her high school heartthrob in 2010 after the death of her second husband.