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>
Rob and Scarlett are going camping tomorrow with her kindergarten class. Although there are some moms going, it’s mainly a dads’ and daughters’ trip, so even if I didn’t have ALS, I wouldn’t be there. And that makes it easy for me to imagine what I would be doing this weekend if I wasn’t in this wheelchair.
A long run. A visit to my new niece. Maybe a drink with girlfriends. Sleeping in.
Certainly not having a caregiver arrive at noon on Saturday and stay until my family gets home on Sunday. To feed me, brush my teeth, put me in bed. I’m not trying to have a pity party, but I can’t help sitting here thinking this is too weird to be real. I used to have a life, and it didn’t revolve around needing constant care.
I’m glad they’re going camping, though. It will be fun for them to spend time together, away from the constraints of my reality. Nice for Rob to get to know other parents in an environment where he’s not worried about taking care of me. This is a theme that’s surfacing more and more often in my mind. I can’t escape from my disease, but that doesn’t mean my family shouldn’t be allowed to. Read More>
There’s nothing to say today. The ocean is blue, the sky is blue, the flowers in the bush over my fence are blue. I’m blue. Even the dress I’m wearing is blue. I’ve been sick with this cold for five days, going to bed at 8pm, trying to shake it off, but still waking up in the middle of the night, dry mouthed and achy, full of nightmares that Rob is gone. I want to wake up in the morning and roll over. That’s it. That’s the whole thing. I want to wake up in the morning and roll over.
Well, maybe there’s more. I want to feel my feet on the ground, stretch my arms above my head. I want to take control of my day, of my life. I want to be alone when that feels good. I want to be among friends when that feels good. I want to walk through my house, something I have never done.
I want to pick my daughter up and spin her around the room. I want to show her how to stretch and how to do yoga poses. I want to run my fingers down her back and make her laugh.
I want to take the dog for a run. I want to walk and walk and walk so many miles until there’s nowhere left to go. I want to climb stairs. I want to try on clothes. I want to look down and see my calf muscles.
I want to play soccer. I want to take a full-entire-complete breath and hold it, without fear. I want to have a conversation with a stranger who isn’t wondering why I’m in a wheelchair, because I’m not in a wheelchair. Read More>