Tuesday, February 9, 2010
We all have worst nightmares about our bodies -- what we think maybe we couldn't bear happening to us, maybe wouldn't want to survive. These fears are cliches in melodramatic screenplays, the dancer or athlete who loses their legs, the painter who goes blind. We're assumed to understand, on a gut empathetic level, how tragic physical loss is and see those who face it as inspiring.
But if it isn't quite so photogenic or melodramatic, we look away. Or if we can "blame the victirm", well there ya go: Gary Busey was asking for it in a way Christopher Reeve was not, right?
And because we know we're supposed to be ashamed if we're closer to the Gary Busey end, we're supposed to be contrite and hungry if we're poor, and we're supposed to get better. If we're losing ground, we know we should go silent.
I'm fighting all those internal voices as best I can. Every day.
Having had lifelong asthma and undiagnosed but limiting orthopedic issues, I've not had the dread a lot of folks carry about losing physical function. It's no fun but it's not particularly soul-inhibiting to not be able to do all forms of mobility. The nightmare I nursed was losing brain function, memory, communication ability -- all of which occurred in 2000 with the anoxia during my knee replacement surgery. It took me almost a decade to get over that actualized fear enough to face another major sirgery, which happened in October (no choice about it) with only the typical postoperative mental effects.
I'm still certain I'd rather check out than live without my fully functional mind -- I/we get to define ourselves, and for me, my brain as is remains the deal-breaker. I have some safeguards in place to keep me from a Schiavo existence, but of course there are no guarantees.
With my physical decline, however, I developed another subterranean fear, that of falling down and finding myself unable to get up by myself. I became aware of this fear the Thanksgiving after my knee replacement, when I went to eat with an extended clan of Texas yellow dog Democrats and wiccans. I sat in a rocker that was a few inches lower than my leg muscles could actually render me upright from. When it was time for me to go, I had to be shouldered to my feet by two pot-bellied hippies who smelled of weed and cranberry relish. I became very careful about where I stepped and sat down after that.
I guess I should be proud I went a decade, then, without a mishap.
Last Thursday I had a physical exam scheduled by disability services. It's impossible for me to get anywhere without serious help. Not long after I got home from the hospital, a gay man named Sheldon wrote me an e-mail offering help. He's a radical pagan cat-lovin' late boomer who lives west of Austin with Win who writes the Konagod blog I enjoy so much. Sheldon has turned out to be a real buddy, someone I enjoy intensely. And he's literally saved my life.
Sheldon got me to my doctor visit in January, which was a serious ordeal. I keep rediscovering how weak I am now. He's a natural at noticing pace, bearing witness, keeping company, and not doing more or less than I ask of him. Other crips will instantly know what I mean. I can relax around him even as I am in extremis.
So I asked him to get me to the disability exam, which I anticipated would be an even harder challenge. He said yes. That morning I got cleaned up and began making my way to my wheelchair in the living room, because I had clean clothes and shoes next to the chair and I planned to dress sitting in it. I was using my folding walker to get through a narrow spot and turned it sideways, then leaned on it sideways. Mistake.
The walker collapsed on itself, going down underneath me and managing to entangle one of my calves in the process. There was enough room for me to land on the floor, but that was it -- no space to roll over, I was wedged between immovable surfaces. I was on my stomach, naked, and getting to my knees was out of the question.
Help, I've fallen and I can't get up.
I wasn't hurting more than usual -- I was extremely lucky that I hadn't blown a joint on the way down. I was even more lucky that Sheldon was on his way to my house. I kept trying to shift, to find some way out of my imprisonment, until I was exhausted from the effort. If Sheldon had not been about to arrive...well, you can guess what kind of trouble I'd be in.
My cat Dinah came at a gallop. One thing that's always been true about Dinah before that day is she has an abhorrence of touching bare human flesh, avoids it with revulsion. She meowed interrogatively at me and I said "Kitty girl, I've done it this time. I'm in trouble here."
She walked down my bare back and stood on my big white ass -- Mount Jochild, as one friend has referred to it -- while she began yowling at the top of her lungs. I kept trying to reassure her but she wasn't listening to me. In retrospect, I'm certain she was calling for help. She didn't shut up or lower her volume until Sheldon knocked at the door, and even then our first shouted exchanges through the door were over her continued hollering.
I'd had a few minutes to consider my options. Sheldon didn't have keys to my door, but more significantly, I have a keyless deadbolt that was engaged, meaning no one could get in even with keys. I yelled this to Sheldon and told him he'd have to call 911.
Which he did, and they told him to get my apartment management to bring what keys they had. After a few more minutes of nude floor contemplation, I saw a flashing red light and paramedics banged on the door. Dinah vanished at that point, her work done. I yelled to both Sheldon and the paramedics that I was naked and I didn't want to be exposed through the door to whoever was gathering outside, just the rescue folks. They said they understood.
A maintenance guy from the complex who is always tracking people's comings and goings is who brought my spare keys. As predicted, the door wouldn't open. Paramedics began banging on windows, and finally got a lock on the living room window to give. A guy squeezed in and turned the deadbolt. I repeated my request that my nudity be shielded as the first paramedic came in. He and Sheldon both told the maintenance guy to stay out of view. Instead, he pushed through a view spot so he got a long look at me.
I saw him and I pointed at him, screaming "Don't you dare look at me, you creep!" He went away after that. I don't know his name but I've seen him on my patio looking in my windows twice in the past. Something I'll now have to deal with. Problem is, I think he's married to one of the apartment managers and my tenancy here is somewhat tenuous because of disability issues.
I was so mad for a day afterward I wanted to do violence to him, feelings I simply don't have very often.
The paramedics came in, intelligently assessed the situation and my limits, and started the process of getting me upright. The first attempt tore at my left rotator cuff, which took a couple of days to heal. On a second dead lift, they got me into my wheelchair. I heaped thanks on them, their burly sweet majesty. I declined a trip to the hospital, saying "I'm actually due to go for a disability appointment right now." One of them grinned "Well, ma'am, you surely deserve it."
I dressed myself, shaking violently, and somehow Sheldon got me to his car. He had checked in with my disability exam office, and they had my appontment down for an hour later than the forms they had mailed me, so we had a miraculous pad of breathing room. I ate the Big Mac Sheldon had brought me -- few things have ever tasted so good, and I don't even like Big Macs especially -- but my shaking progressed on into rigors.
I made the exam, which was arduous and strange. My BP was very elevated and my pulse very low. The doctor was distant, insisted I wear a mask because of flu risk, and didn't give me much information. A couple of the physical maneuvers he asked me to perform were unexpectedly difficult, revealing loss of muscle tone or nerve function on my left side that I hadn't known about. He said he wanted me to get x-rays and left the room.
When Sheldon came in to wheel me out, he looked at me closely and suggested I wait on the x-rays, I looked done in. I agreed and said I need to use the bathroom. Turns out, their wheelchair accessible bathroom was blocked by equipment. Sheldon calmly moved things around, muscled me through, and I got onto the pot before having violent diarrhea a couple of times. Afterward, I was too weak and shaky to pull up my pants all the way, and Sheldon came in to do that for me.
I didn't think I could make it from the car to my bed, but I did. Sheldon set me up with groceries and supplies, and offered to come back to help clean my place. He's here as I write this, hauling trash. He brought me take-out Chinese (which I haven't had in over a year) and one of his home-made banana walnut muffins. He and Dinah have met, and she's not hiding from him in terror, a first for her.
I'm getting a prepaid cell this week I can wear around my neck when I use my walker at home. Sheldon now has keys to my house, and I'm still pursuing food stamps and home assistance as well as Medicaid and disability. I am a few inches up from the very bottom of the pit I found myself in. And now I've weathered another nightmare.
I want things to get much, much better than this. I have a month's worth of income left, not even part-time work any more, and my endurance is so threadbare, finishing this post has taken days. But I am not alone. I remember Sheldon's long grey hair drifting over my shoulders as he wheeled me into the fresh air, I have General Tso's chicken waiting on me, and I can still write. Plenty on this crisp day, what would have been my mother's 83rd birthday.