“The scale says 65 pounds,” the physician’s assistant says doubtfully.
“Well, that can’t be accurate,” I say. “I mean, I know I’ve lost weight, but not that much.”
Molly agrees, from her spot on the right side of my wheelchair. She is my visiting nurse, and has been helping the PA move me back and forth so they can get a giant sling wrapped around my body. Every time I’ve used this machine, the PA says the same thing.
“This was donated, and it is a $10,000 piece of machinery, so when it goes, we’re out of luck.”
The tarp-like device is attached to a hook in the ceiling and when the PA presses the button, the whole thing rises like a thick uncomfortable hammock, with me trestled inside on splayed legs. The first time we seem to near an accurate reading, but then the ties on my boots get caught in the wheelchair, and the whole thing has to be redone. Twice more they lower and lift me, like we’re at a construction site instead of inside a hospital bathroom. There’s a bruise on my leg that I can’t see, but I’ve been able to feel for months, almost like the inside of my thigh is just rotting away. Every time I go up, my leg turns to painful mush. But I really want to know what I weigh, so I don’t say anything about the mush. After we get two 65-pound readings, it seems clear the exercise is over. That maybe I’m the one who has finally broken the machine.
That is the beginning of an ALS clinic appointment.
After that we go into a small windowless room, where my vitals are measured. The walls are painted light blue with fluffy white clouds, which has what I assume is the opposite of the intended effect. I always want out of that room as soon as I get inside.”Your blood pressure is a little high,” says the PA.
“It’s probably from going up and down in that machine so many times,” I reply lightly.
Molly helps me fill out a survey about eating habits and attitude towards a feeding tube. My favorite question: Do you think getting a feeding tube would make you feel less sexually attractive?
The doctor comes in, which I wasn’t expecting, as I usually see him toward the end of my three-hour visit, when I’m so ready to get out I can barely summon up enough energy to explain ainything about my current situation.
“How are things at home?” he asks, and a lengthy conversation ensues. The short answer, not great. There is the kind of fighting over silly parenting things that you would think you could transcend with so many other issues going on. But in our house, ALS is just another lens through which we see ourselves and each other, and it doesn’t take the place of the frustrations, of all the little slights and misunderstandings. Instead, it’s just a way to make difficult things worse.
The doctor tells me that’s not true for everyone, that some people seem to do really well in their relationships despite ALS. He admits that those couples are usually men as patients and women as caregivers, that often they don’t have young kids. “I would be terrible at it, at being a caregiver,” he says, and I find his honesty validating. This business isn’t for just anyone, and it doesn’t matter what you think you signed on for, because there’s no way anyone sees this coming.
He asks about Scarlett, and I cry. It’s hard to get the right words out in that little room with the depressing phony clouds. The doctor runs his hand over his stubbly beard and leans back. He wants to help, he wants to make things better. He wants to go grab a beer with Rob. He asks if we can please find a happy ending for this appointment, and then we all laugh at him for using those words.
I briefly see the respiratory therapist about getting a suction for the nose I cannot blow, and the occupational therapist, for help with a wheelchair that is increasingly hard to drive with my weakening right arm. They both have answers, short-term though they may be. I’m supposed to see the physical therapist too, because my shoulder and back are hurting at night. But at this point, it’s been 2 1/2 hours, and I’m done. I tell them that unless the PT is going to say something absolutely amazing, I would rather leave and have lunch. So I do.
Molly and my assistant Johana and I walk out together, and I realize that I’m OK, which is not how I usually feel after clinic visits. Normally, it takes me a week to dig myself out of that heavy, airless space. But it’s been over a year since I’ve been to the clinic, and it turns out there’s not really anything they can say to make it better or to make it worse.
Maybe I’m more in control than I think.
Please consider donating to ALS research. #whatwouldyougive