The following is an attempt to answer or make sense of what I ask in my last post – “What the Hell happened?” It is my memories of the weeks leading up to my spinal surgery three and a half years ago – which left me far more disabled, with a much different life, a new life – and its immediate aftermath.
It was late on a Thursday afternoon, a bit over three and a half years ago, in 2017. I was out in the backyard, probably tilted back in my wheelchair, reading the Los Angeles Times on my Kindle. Although it was the middle of February, I’m sure it wasn’t that cold, as is usually the case here in So. Cal., if I was reading outside. Even so, I was in my usual Winter get-up – turtleneck with a t-shirt under and maybe over it and long johns and bib overalls and my Doc Martens (my Docs, as I liked calling them).
As I was waiting for my attendant to come to make my dinner, I could tell that something was wrong. I began to feel funny, like maybe I was getting sick, like maybe I had a fever. It was getting hard for me to read – a sign that there was a problem.
If I was getting sick, there was definitely a problem. I was supposed to fly early the next morning to South Carolina or somewhere else on the east coast – or was it Oregon? - to attend the Mid-Winter Gathering of Friends for Lesbian, Gay, Bisexual, Transgender and Queer Concerns, an amazing group of Quakers from across the country, over the long President’s Day weekend. I had been looking forward to going to the once-a-year gathering and definitely didn’t want to miss it, and what about my plane reservations?
That morning, in preparation for the trip, I had a nurse come over and catheterize me. I had had problems with urinary retention, especially on trips. I wanted this trip to go well, with no problems, and thought it would be best to just have an internal catheter for the weekend and not be worrying about whether I was peeing or not. The catheterization that morning did not go well; the nurse had difficulty inserting the catheter, and it took a while for her to do the job.
And now there was a problem. By the time my attendant cameat 5 or 5:30, I was feeling downright bad, ill. I did have a fever. I don’t remember if I had dinner, but I did spend the evening in bed, feeling worse and worse. My attendant called the nurse agency, but no one could come until later.
It was something like 11 or midnight when a nurse came. By that time, I was feeling quite bad and also in pain, and she determined that the catheter should be removed. My attendant – a different one at this time - told me later that, when the nurse removed the catheter, she (my attendant) “never saw so much blood.” There was definitely very much a problem.
It is funny how memory works. I remember these moments on that afternoon and evening three and a half years ago, in 2017, very clearly, but I have far fewer memories over the next two weeks. Perhaps it’s because this was when it all began. Perhaps it’s because of the pain, the excrutiating pain that started over the next day or so, radiating from my neck. The pain that developed in my neck was so bad that it hurt too much to move my legs, if not also my arms. I was in agony. It was like nothing I’d ever felt.
But I’m getting ahead of myself. I know that, on the morning after my catheter was removed, my attendant – another one – called the airline and said I wouldn’t be flying, and, at sometime during the day, someone at the gathering was notified that I wouldn’t be attending. This was bad enough. I also think that I was taken to an urgent care center, where a urine sample was taken, and I was perhaps given a prescription for a pain medication.
After this, things really got crazy, really went downhill. I don’t remember the timing, but I was soon in unbearable pain – screaming anytime I was moved – and was taken to the E.R. I remember I was given a shot of morphine, and it felt good. I also have a vague memory of the doctor wanting to do some procedure – a M.R.I? – to see if I had meningitis or something, but I think I refused. I was definitely prescribed more pain medication.
This was no doubt when I begun a regimen of medications. I remember taking three different pain medications – including Gabapentin and Tramadohl – at staggered times, so that I always had something but not too much.
Even so, it got to be too painful to lie down. I ended up spending nights tilted back in my wheelchair or my shower chair, which I had recently gotten after seeing that my friend Leslie in Berkeley had one, with a space heater near me. The trouble was that my ankles and legs would swell up.
Despite these measures, I continued to be in great pain, and I was taken back to the E.R about a week later. I remember Vicadin was suggested. I may have been given a dose there, but I don’t remember taking any at home. Also, I think it was around this time that there was a call from the urgent care, about a week after a urine sample was taken, saying I had a urinary tract infection. I’m sure an antibiotic was prescribed, although I don’t recall.
I don’t remember very much at all during these weeks. I don’t remember eating or drinking or food being bought. I don’t remember watching T.V or trying to read. I do remember being in the living room a couple times with a few of my attendants and my friend Seiji, who I had met in a Mankind Project group and who was trying to do body work with me. I don’t remember if he was successful, but I do remember feeling calm with him there.
Another thing I remember is a nurse coming and giving me an enema. Because I couldn’t sit on the toilet and probably because of all the medications, I was getting quite constipated. I had always not wanted to use enemas, but here I was. I remember waiting the twenty minutes or so after the enema was inserted and then shitting bricks or rocks, except, rather than feeling that way, they gushed out in a stream.
So, two weeks went by like this, and I was not getting better. I continued to be in agonizing pain. Two weeks after the afternoon in my backyard, my older sister Kate flew down from Oakland for the day, if my memory serves me right. It was Monday, the day before the last day of the month, and we had an appointment with my physician, who I had never liked. It was time for something different to happen. I couldn’t go on like this.
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