From Home and Stage 6. Late Adulthood – The Artisan in the Wild Orchard
A little bit of slurred speech at the dinner table in January 2008 made us think I might have had a very mild stroke. All the tests showed no evidence of a stroke. After a while I was transferred to a senior neurologist who started testing for Myasthenia Gravis. Finally, in May 2009, about 16 months after the first symptoms appeared, the doctor said it looked like Progressive Bulbar Palsy, a Motor Neuron Disease, very closely related to, and most often a precursor, of ALS. What had been a minor annoyance had produced a sudden wrenching reality shift. I Googled Progressive Bulbar Palsy. First was the Wikipedia article and it was horrifying. I knew Wikipedia can be inaccurate, so I looked at the Merck site, next down in the search results. It told me PBP is incurable. “Death…usually occurs 1 to 3 years after the disorder begins”. This is what set me off…the initial shock. This was a little over a month before the end of my 7th year at DMHS. I knew I had to finish nine years to qualify for lifetime medical benefits. The race between my disease and retirement with full health benefits was on.
During the eighth year at the school my speech continued to degenerate. I qualified to get my health insurance to pay for an expensive hand-held artificial speech device. I got my DynaVox in November 2010, just before winter break, and brought it into the library to give my most common directives a humorous twist with a well amplified artificial voice.
In the first week of the 9th and final year my voice gave out from my over ambitious scheduling. The Principal, who had found ways to get rid of many vulnerable teachers during my time as chapter chair, set her sights on me. Luckily, when I asked Dan Barnhart of UTLA for support, he put me in touch with the ADA compliance officer for the district. The day before the principal called me in to tell me the bad news about my job, I obtained the forms and wrote up my accommodation plan, that involved using my adaptive speech device. Instead of whisking me out of there, she had to sign an agreement with the force of federal law guaranteeing me the right to do my job using the accommodations for my disability. To really guarantee a fantastic final year, she was promoted the same week to a position at district headquarters, and the assistant principal was hired to replace her. He was a great ally, who had developed a lot of respect for me in his year as AP. I narrowly escaped the executioner, and had a triumphant final year.
From #6.6 of SA6. Teaching