The following was written by Little Patuxent Review Co-Publisher, Desirée Magney.
I was sitting at my breakfast room table a few months ago, talking on the speakerphone with our editor, Steven Leyva about LPR’s upcoming “Prison” themed issue. As the new co-publisher, I was furiously taking notes about the publication schedule. Our conversation then switched from the minute details of producing the issue to the prison theme itself. We spoke of the body as a prison and the artist, Lania D’Agostino, whose work represents those confronting issues of gender identity. But another type of bodily imprisonment immediately came to my mind and the pencil I was using to take notes froze in my hand as an image of my eldest sister Kathy flashed before me.
About two years ago, my sister, Debby, and I signed a sheet at the front desk of our sister, Kathy’s new assisted living apartment and began the walk towards her room. The odor hit me first – a faint hint of urine covered with a thick blanket of Lysol’s Crisp Linen scent. But it was as nice as these places can be and I had seen a number of them over the past few years. The carpet was forcefully bright and cheery – forest green to hide the stains but with red, pink, and white flowers to soften the look. I glanced up and on the wall to my left was a framed print, an exact replica of the one at my mother’s assisted living apartment building in Washington, D.C., where I had been her caregiver.
I hadn’t expected to be in a place like this again so soon. Our mother had passed away from Parkinson’s disease and Vascular Dementia in mid-March 2014. All my sisters and I joined together for the funeral in Pennsylvania, where we grew up. During those few days back in Camp Hill, it struck me once again how different we all were. Kathy with her dark hair, once olive-skinned, now pale but meticulous about her vitamins, herbal supplements, healthy eating, conspiracy theories, and Mormon religion. Linda, with her light brown hair and eyes to match, pinned like a sorority girl with a four-inch Catholic cross fastened to her long, loose, nun-like dresses. Debby, blond like me but blue eyed against my green ones, both of us lapsed Catholics and of no religious denomination but accepting of our sisters’ rights to believe in whatever religion or politics they chose, so long as we didn’t have to discuss them.
It was mid-October of that same year, when Debby and I met up outside Atlanta to visit Kathy. Around the time of Mom’ s funeral, Kathy had been diagnosed with carpal tunnel syndrome and was wearing a soft splint on her right forearm. The weakness wasn’t improving and when a friend commented to her how painful it must be for her to work all day on a computer, she responded she had no pain.
“Then you can’t have carpal tunnel syndrome,” her friend replied. “It’s very painful.”
Kathy sought a second medical opinion. By then she had started to experience weakness in her left hand and arm as well. After tests to eliminate a brain tumor and something called Stiff Man’s Syndrome the doctor told her the news.
“You have ALS.”
ALS, Amyotrophic Lateral Sclerosis, is more commonly known as Lou Gehrig’s disease. If you Google it, you will find it is often described as “the cruelest disease.” Over time, you lose your capacity to do everything, including swallowing and breathing, while your mind remains fully engaged and aware. Following a diagnosis, the life expectancy of an ALS patient is typically three-to-five years. In Kathy’s case the disease was progressing at a speed the specialists at the ALS Center at Emory Hospital in Atlanta had never seen. The only positive thing I could think of was that she had access to the best ALS doctors in the world. They could walk her through the progression and make practical recommendations along the way. But there is no cure.