Driving back from a specialists' office three hours away, my mom and I crested the big hill, the one where the bay spreads out below and you know you're home. This song (hit play) came on the radio as we silently looked out the windows at melting white snow and cold air and the glinty last remnants of sunset on the bay. It was that time of night where everything exhales blackness, and the blackness slowly absorbs the last light.
The sky acutest at its vanishing, as Wallace Stevens wrote.
The doctor ordered more IVs, different IVs, and said there is a school of thought among some physicians that Lyme causes what the French call Maladie de Charcot. But no one knows. Our motor neuron maladies are more mysterious to modern science than AIDS and cancer and the moon, so mysterious that even accurate diagnoses elude us. So we're left to lay still, minds intact, as our voluntary muscles stop working.
My mother arrived three weeks ago and now helps me move from thing -- bed, chair, bath -- to thing. My boy has been a trooper but the night before our trip to the new doctor, he broke. I tried and tried to stand and pivot into bed to lay next to him and read One Fish, Two Fish, Red Fish, Blue Fish, but again and again, my legs wouldn't lock. I told him I was so sorry, but I couldn't do it. He began sobbing.
Try again! Try again! ONE MORE TIME! he cried over and over. I just...couldn't. As much as I wanted to. I finally grabbed him from bedside and held him and sang him into quiet. He finally talked. Maybe the special doctor will make you better.
And maybe he will. The special doctor ordered an array of new drugs, said such regimes have been successful in halting symptoms in his patients who've been diagnosed with ALS, and one's been alive and kicking for 12 years, when most with that dx are hit in the lungs and die in two to five years, starved for air.
So there is hope.
My mother and I believe this. I looked over at her as Snow Patrol played on the radio, and we both were crying. We both looked back at the water and snow. Then I felt her warm hand slide into mine, and we drove the rest of the way home like that, saying nothing, as night fell on the bay.