I’ve spent years writing about pain and suffering. Now I’ll spend years learning how to live with physical disability.
In my memoir, Where the Light Fell, I tell the saga of my older brother, in whose shadow I grew up. Marshall was blessed with an off-the-charts IQ and preternatural musical gifts, including absolute pitch and an auditory memory that enabled him to play any music he’d ever heard.
Everything changed in 2009 when a stroke cut off blood flow to his brain. One day he was playing golf; two days later he lay in an ICU ward, comatose.
Only a rare type of brain surgery saved Marshall’s life, and thus began his new identity as a disabled person. In a reprise of childhood, it took him a year to learn to walk and more years to speak sentences longer than a few words. He plugged away, working with a useless right arm and a speech condition called aphasia. Now he proudly wears a T-shirt that says “Aphasia: I know what to say but I can’t say it.”
From my brother, I learned the challenges of disability. The vexation of being unable to get words out. The indignity of needing help with simple activities like taking a shower and getting dressed. The paranoia of knowing friends were making decisions about him behind his back.
In public, strangers averted their gaze, as if he did not exist. Only children were forthright. “Mom, what’s wrong with that man?” they’d say before being shushed; bolder ones approached his wheelchair directly to ask, “Can’t you walk?”
The frustrations grew so great that Marshall researched how many Valium and Ambien pills it would take for him to kill himself, then downed them all with a quart of whiskey. His suicide attempt failed, thank God, and he ended up in a psych ward. Since then, he has gradually rebuilt his life, aided by many hours of therapy, …