Some thoughts on “escaping“

Montour Trail tunnel, Pittsburgh. Photo by me on 12/25/2016

First off, sorry that I’ve been MIA, Particularly since there is so many exciting things happening for me right now. I still haven’t found a good creative space in my days, since I always have caretakers during the morning and I get to be pretty low energy in the afternoon. And second, sorry that I’ll be talking about escaping etc. without reference to the larger events in our country/world these days. I have the luxury of staying in my little bubble, so that’s what I’m mostly doing.

A week or so ago, a home health nurse was seeing me for the first time. I mentioned something about having just moved in here, and she asked if I had downsized from a bigger house. No, I told her, I’ve just come from long-term care. She exclaimed, “you escaped from a nursing home?!” She went on to tell me how strong/brave/etc. I must be, and also promised me that I would love the experience and get so much better care now that I’m at home. She was not wrong.

I hear this language of “escaping” all the time. It’s built into the fiber of the disability rights movement, from the start of the independent living movement in Berkeley in the 1970s to more recent advocacy pieces on escaping the nursing home. And while I know it’s a real issue, especially for people who are “parked“ at poor quality places, I never really felt myself trapped at my facility. Part of that is that I was in a fairlygood facility, as facilities go. Another part, I’m sure, is that I knew I had the ability and resources (people and money) to go someplace else if my facility became dangerous to my health, for example. And part is because the system leads you to believe that you need the institution, to believe that I wouldn’t be able to cope without the kind of care and services it provides.

I wish I had remembered what Foucault and others tell us about institutions (although honestly, coping with a spinal cord injury is enough without having to pop back open my notebooks on Foucault!). Short/gentle version, as I’m drawing on it right now, is that institutions (meaning not a single nursing home, but the institution of nursing homes) are really good at surviving, and they need participants in order to survive, so they intrinsically resist change, in people or in structures. People in the system might be able to encourage me to move on, but the institution itself is sticky, and built (intentionally or not) to make it hard to get out of the structure once you’re in it.

I’ve been out almost 4 weeks now. The first day was really tricky – my hospital bed and Hoyer lift didn't arrive, and everything else seemed rocky, and I felt the pull of the “simplicity” of the nursing home. But after that, I have not regretted my move for a single moment. I have not missed the nursing home (even though I do miss a few of the people). I have not thought about going back, or wishing I was back. Things are still really hard here – my body still hurts, insurance still sucks, medication still fogs my brain, and I still deal with the challenges of a world that doesn’t accommodate me or my chair particularly well. And home health is sometimes frustrating, sometimes awkward, sometimes scary, and more expensive for me than long-term care.

But I’m living my best life. I wake up looking forward to the day ahead, I fall asleep feeling content and peaceful. I enjoy and even taste food again (last night I had soft tacos with leftover steak and mushroom that I had cooked along with guacamole from chipotle, and the cilantro almost made me cry). My prescriptions are so much cheaper. My care is so much more consistent, and this makes such a difference (e.g., I’ve had a small wound that wouldn’t heal for the last four months but now it’s almost entirely gone). My legs are feeling more sensation. My brain is feeling more possibilities. I love the sound of the rain outside my window. I think I might buy myself a fireplace. Next Saturday I’m going bowling.

I know that nothing is perfect, I know that something might be good for me and not for someone else, and I know that this independent/collaborative setting that is so good for me right now might not always be a fit. I’m glad my long-term care facility was a soft landing place for me after I finished with rehab, and I send my best wishes to the staff and other residents there.

But I am so, so, so glad to have escaped.