My brother called my cell phone while I was out of reception range and by the time I remembered to call him, I had learned that one of our cousins had died. I told him of this and he worried about where –– and to whom –– to send his check. We spoke for a while, then, signed off. His voice was strained as he returned my love but I knew that the admission was only one of the challenges he faces on a daily basis.
My second bride, who has recently completed course work for nursing school, told me of her contact with a nurse who admitted to being “repulsed” by psychiatric patients, and especially those afflicted with a syndrome called tardive dyskenisia. The woman then made mocking mouth moments, and shuddered. Until she used it, I had not known the term that describes my brother’s years of long and daily physical struggle.
The National Alliance On Mental Illness (NAMI) defines tardive dyskenisia as “muscular side effects of anti-psychotic drugs… primarily characterized by random movements in the tongue, lips or jaw as well as facial grimacing…”
My brother’s schizophrenia has been tamped down by medication for years; he lives independently and until recently, was employed as a cook for a hospital cafeteria. When I visit his apartment in Pittsburgh, I am struck by the structure and organization he has imposed on himself, a discipline that I –– the presumed-to-be “sane” one –– lack in spectacular measure. His pill regimen is meticulously recorded in a ledger, with the pill bottles lined up or measured into a “daily dispenser.” If I have driven to see him at a certain time of the month, I will take him grocery shopping at his favorite, least expensive store. He will stock his pantry and freezer according to his needs and notes and at home and under his direction, I help him put up his purchases. If I am not available, he will take two buses to do his shopping, or take a jitney, the illegal private taxi that provides the only reliable service to some areas of his city. He prefers the jitney, because he can hear the comments of the kids on the bus.
“They talk about me, about my neck and mouth and stuff,” he told me without rancor. I wondered, but did not ask, what he must think when hearing people mock and giggle at his uncontrolled behavior as he traveled to his job, and home from it. (I wonder now, if any one of them was as reliable a worker as my brother.)
A blog written by a friend details some of the sufferings she and her sister shared: she, because of her sister’s illness and her sister because of the strangling tentacles of bi-polar disorder. At one point, she witnesses the cruelty of a psychiatrist toward her sister. “If I ever see you in my hospital again,” she threatens, “I’m going to shoot you so full of Thorazine that you’ll be —” The professional mimics my brother’s head and mouth movements.
My brother and others like him whose brains have misfired have the challenge of reining in demons and fitting into a fearful and contemptuous community. Most live in the “quiet desperation” of which Thoreau wrote, and “go to the grave with the song still in them.” Many of those who suffer from mental illnesses, once they have been properly diagnosed and treated, spend fruitful and productive years contributing to society. They have accepted, embraced and often, conquered the achievement of social integration.
They have accepted the challenge. The last challenge is ours: acceptance.