Friday, November 1, 2019

The ALS Diagnosis Part 2

The pier on Carrie Bow Caye, Belize, "my happy place" posted on FB, May 2016
After the deflating visit with the neurosurgeon, I did more research on what I might possibly have. I came up with a few potential diagnoses, one of which was ALS. On April 1, when Chris was on a field trip with UC Merced students, I watched the movie “Trans Fatty Lives” about a young man with ALS who filmed his early experiences and made a full length movie about having this disease. I cried as I watched this, alone in Mariposa. No one wants to hear an awful diagnosis like this. I would bring it up with friends, my sister-in-law Judy Hurley, and Chris—no one wanted to accept that this was a possibility.

         We drove to San Francisco the night before my medical appointment, staying overnight with Charles and Lauren, who were concerned friends of long standing. Arriving at 10 am in the doctor’s office, we were ushered in to meet Dr. Richard Cuneo, white-haired, senior doctor with a patient, calm attitude. He examined every inch of my body for the next hour and a half. Around noon time, he asked, “Can I send you to see another few specialists?” Of course, we said.

         The next two teams of doctors inserted 2-3 inch needles into every joint in my legs and arms, then attached electrodes to send pulses of electricity through my body. I lay on the examining table, a small, shriveled, scared person in a flimsy examination gown, inflicted with the pain of needles being pushed into all of my joints. The doctors huddled over their computer screens looking at the results of the tests and nodding their heads. At 4 pm, when the tests were completed, Chris and I returned to Dr. Cuneo’s office overlooking the city of San Francisco.

         “The results are in”, he said slowly.
         “I want to know what I have. Don’t hold back.” I said.
         “I won’t”, he paused. “You have Lou Gehrig’s disease, or ALS.”

The floor dropped out from under me. The room swam. Chris immediately gasped and cried. I knew it—the worst was now known. A life completely different than what I’d known was starting.

         I then entered into another tough period—telling family and friends that I had an incurable disease. We called Evan first from a fast food restaurant on our way back to Mariposa. As a medical professional, he took it calmly, asked a lot of questions, and said he’d be there for us. Dana was working and living on an organic farm in Catheys Valley, a village nearby Mariposa. When she saw our car drive up, she came up from the garden, soil on her feet and knees. We all hugged each in a ring, then told her the news. We all cried. My heart went out to her. My emotions were completely spent. The next day, calls went out to my sister, my brother, then my mother. Chris called his sisters. Steelie and Seth both called and texted. They wanted to know. The word was out.
Marilyn, Dana, Evan, and Meghan's sister Ashley Kneale, after UCSF 3rd visit, July 2016

         We returned to UCSF three days later to meet with the ALS care management team and the attending physician, Dr. Catherine Lomen Hoerth. ALS clinic days are essentially medical speed-dating with physical and occupational therapists, social workers, nurses, and the doctor. A respiratory therapist measures your capacity for breathing. Mine was at 75% of normal breathing for someone my age. It was a whirlwind. Afterwards, we drove to our vacation home in Sea Ranch, which overlooks a rugged part of the California coast. We returned to UC Merced and Mariposa a week later to continue with starting the process of reconciling an active life with one of dependence and decline.

         Finally, I gathered my lab group together and told them the news. One of my best students, who I’d known since my first semester at UC Merced, Bobby Nakamoto, had tears in his eyes. His response was so important to me—you just can’t imagine how it feels to see suffering in other people’s faces. My reaction, then, is to help them feel better. Over time, I’ve gotten pretty good with this.
We went camping in the Tetons and Yellowstone, July 2016

         Evan came out to Mariposa from Washington DC in early June. We filmed several short clips of the Ice Bucket Challenge and posted them on Facebook. The word was now out to my larger community. I took a much-needed breather with family, enjoying Yosemite National Park, and some fun times. I could still walk, move, and use our home fully, but the naiveté of the past 18 months was stripped from our family’s psyche. We were dealing with a major change in our dynamic. This was a silent crisis of major proportions. There is no rational reason why I have got this disease. Why not me?
Mariposa "Sessions" talking to friends and recording: Seth, Bobby, Matt McCarthy, Justin Yeakel, Marilyn, Paul Koch, January 2016

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