Wednesday, November 18th, 2009
In this week’s paper, my mother, Sondra Hart Dickter, tells the story of her 25-year battle with Parkinson’s disease.
She needed some help. The story that appears as our Back of the Book feature originated several years ago when my mother, with shaky but still dependable hands, wrote a few paragraphs into a notebook about her diagnosis at age 47 with this terrible disease, generally associated with the elderly, and her life since.
I knew the details, but she had never before expressed her feelings about her prognosis and the reality that this was a “progressive” illness (an oxymoron if ever there was one).
“My mother had died. I couldn’t tell my father, and my husband cried when he heard the diagnosis,” she wrote, suggesting that despite a supportive family, her mother was the only person in whom she could comfortably confide.
She handed me her essay with title “The Ancient Parkinsonian,” an homage to Samuel Taylor Coleridge’s “Rime of the Ancient Mariner,” a poem she apparently enjoyed. There was evident irony in the title since she was a relatively young person with an elderly disease.
After typing it into my computer, I told her I’d one day sit down with her to add more details. But although we spent plenty of time together, I never got around to doing that, and I will have to live with my guilt for not paying attention to the ticking clock.
Her speech declined over the years as decreased muscle control impacted her ability to project her voice. In July, she suffered a stroke and has been unable to speak ever since. Weeks of speech and physical therapy after the stroke produced little, if any improvement.
Communication was my mother’s stock and trade, just as it is mine. She was a teacher, full- and part-time, for more than 30 years and loved to write stories for her grandchildren. She also inherited her father, Samuel Hart’s penchant for poetry. She particularly liked acrostics, spelling out her children and grandchildren’s names in her work, which at one point she inscribed on wooden plaques as gifts.
In the weeks after her stroke I consulted with speech therapists about her condition. Overcoming the damage of both Parkinson’s and a stroke would be a tall order. My mother was always a fighter, but after a few weeks I reluctantly accepted that, barring a miracle, there won’t be any more spoken words from her.
But at least this week, with her story in print, I can take comfort that in a small way, I have given her back her voice.