I set myself up with my smart phone, laptop and a cup of tea. When the phone rings, I hit "speaker" and poise my hands over the keyboard, ready to transcribe the doctor's words so we have a record of the call and I can share it later with immediate family members. We are scattered all over the map.
Mom and N- are in the neurologist's office in New York. I am in my kitchen in California.
"I'm so sorry," the neurologist begins. And my chest caves in a little and my ears strain to hear better, and my hands freeze. "We've ruled out stroke, tumor, MS and a number of other possibilities…"
I type: "Not tumor. Not stroke. Not MS."
"…But I'm afraid to tell you that the signs are pointing towards ALS."
I type: "ALS." I type: "FUCK!!"
There is a horrific silence reaching all the way across the country. Coast to coast. My heart sinks. Drops really. Like a piano from on top of a skyscraper. I don't know why this image comes into my consciousness. I wonder if my mother and baby sister are crying yet in the doctor's office. I want so badly to huddle with them, embracing our sadness and fear together.
"I'm so sorry," the doctor says again. And I can tell that she means it. For some reason, her crisp British accent adds a gentleness to the reality we've just been slammed with. She continues, "We need to rule out a few other possibilities. Unfortunately, there is no actual test for ALS, so it's a matter of ruling out other diseases that present with similar symptoms…"
"So there's a chance it's not ALS!" my mother chimes in.
"Yes, there is a slight chance." Her emphasis is on the word "slight."
I stop typing. I am listening. I am asking questions. N- asks for clarification in her awkward speech that has been becoming less intelligible over the past few months. We were all hoping this was a delayed reaction to her severe concussion over a year ago.
This is my "baby" sister, who has just turned 50, whose life has been a miracle since the day she was born more than 2 months prematurely in 1967, the 4th sibling who managed to survive the surgical removal of one of her lungs when she was only 9 years old, the sister who has already spent a huge bulk of her life visiting doctors, staying in hospitals, and being on so many medications she has to set aside an additional 2 hours every morning just to take them as she prepares to go to work, the sister who somehow made it to 50 and works as a psychiatric nurse practitioner. She is the least deserving person on the planet for such a diagnosis (not that anyone is deserving).
My heart leaps out to her. I want to be calm and strong in the face of her fear. Not that she's showing any yet. But MY GOD! I'd be shitting bricks. I'd be making sure my will is in order. I'd be stockpiling narcotics. I'd be running around like a chicken who has just lost its head. I'd be…
I'm so glad it isn't me. And then I'm horrified by my selfishness and relief. But also filled with so much love for her. So, so much.
I am super pissed off at God, Goddess, The Universe, whatever the Fuck. Again. First, for losing my son to suicide. Then, for my cancer last year. Then, for the cancer battle my mother is currently fighting. Now this. I'm beginning to feel as though the family's cursed. What horrors did my ancestors commit for us to be paying in this way? I'm asking this even though I don't really believe that's how fate functions. How can this possibly be my sister's destiny? And why? The familiar, frustrating, unanswerable "why?"
This morning we received confirmation that the last test we could possibly perform to rule out ALS was negative. It's not the less cruel disease the doctors thought it might be.
So here we are. ALS. A Life Shattered. A Lousy Summation. Another Ludicrous Sadness.