Scarlett and Rob are skiing in Tahoe. I have spent three nights without them, and am definitely looking forward to having them home tonight. While they were gone, I had various people stay with me, including my sister, two caregivers, and my friend Andrea who is well-versed in ALS having lost her father to the disease.
So I’ve been well taken care of, but my mood was slippery. On Saturday afternoon, I sat on the back deck in the sun, watching Otto run laps to impress me. Still I was alone and lonely and I allowed myself a significant amount of time to reflect on how shitty this situation is. When Rob and Scarlett first started going to Tahoe without me, I was incensed. It hurt to be left out, especially because I was just beginning to understand that I would be left out of so many things, even while I was still alive. I have never felt like there are places I couldn’t go. At least, not places where I wanted to go. When your legs are strong and your feet will carry you, you can go anywhere. When your voice is strong and your breath a guarantee, you need not question your place in the world. When your hands can open and close and your arms can reach up and out, you are allowed to be connected.
But my breath doesn’t come easily, and I can no longer sleep in a normal bed without torturing myself and my family. So Tahoe trips take place without me. As do trips to Arizona and Florida and even concerts at inaccessible venues with smoke machines that would have me gasping whether or not I could roll in unassisted. Whose world is this, Nas asked, and his answer the world is yours doesn’t feel true to me anymore. I certainly still have a world, but it seems to have gotten much smaller. Read More>
I miss my handwriting. I miss doodling on the margins of a page and filling in the answers to a crossword puzzle and sending a thank you note and making lists. I miss dancing and real hugs and opening doors and swinging my legs over the side of the bed and putting my feet on the ground.
Last night Scarlett was in my lap reading herself a book. Her hair is down to the middle of her back and it ends in rings of gold. All I could do was look at that glittery hair against her little brown back. My hands won’t even rise high enough to touch her. It is heartbreak. I want to hold her so much that my stomach hurts and I feel a quickening in my chest. I have shed enough tears over this to generate my own weather pattern, and still my body won’t accept the fact that it can’t reach for this person it created.
I am becoming increasingly breathless, and my tongue is twitching inside my mouth as if electrified. It is horrifying to watch, just one more muscle growing weaker and caving in, the whole thing looking like a worn down soccer field full of divots waiting to trap an ankle and snap it. I can still talk, still swallow. But my whole body is tired, and my brain races with ideas that I could never realize.
These are true things. But there are other true things that are significantly more uplifting. Read More>
I think Otto might be having an identity crisis. He hasn’t said anything specific about it, but Scarlett changes his name nearly every day and I just feel that this must be confusing. Sometimes she calls him “Sticks” and other times she affectionately refers to him as “Phinneas.” She has spent hours telling him that his name is “Bernice”, and I once caught her chasing him in the backyard with a stick screaming “COME BACK, PROFESSOR!”
In case that thing about the stick alarms you, let me assure you that the professor was having the time of his life.
But really, what’s in a name? An Otto by any other name still farts as much. I guess I’ve been thinking about identity a lot lately, because there is so much wrapped up into what we consider our self, and it’s undeniable that parts of myself are slipping away from me. I’ve never been someone who dwells in the past, at least I wasn’t until I got ALS. Now I look back with a nostalgia typically reserved for someone who has lived twice as long as I have. I have never wanted to go backward, but I would like to go forward differently. I would like to feel more like me.
The writer Gerda Saunders recently published a book called Memory’s Last Breath: Field Notes on my Dementia. I read a review of the book and was struck by the following phrase: Read More>