What the Hell did happen - part 2

 

(This is the continuation of a narrative about the events leading up to my spinal surgery three and a half years ago which left me far more disabled or at least my memories of them.  I remember thinking at the time that I should write about this, that this was something to write about, especially while I remembered the names of all the doctors, but there was no way I could write this in the first year or two after the surgery. It wasn’t until a few weeks ago that I felt that it was time to write this.)

 

   As I sat in my backyard reading on the mid-February afternoon three and a half years ago, I didn’t know it was the last time.  I can sit in my backyard, but I can’t swipe a kindle.  I can’t easily have overalls put on, and it’s hard enough getting one shirt on, let alone three.  I can’t wear my Docs anymore, and having long johns put on and off just feels too hard (although they may well help in the cold weather with the neuropathy I now have as a result of the surgery).

   I didn’t know all this when my sister, who flew down from Oakland for the day, and one or two of my attendants accompanied me to my primary doctor, Molly Hansen, on the Monday morning before the last day of February.  For two weeks, I had been in agony, not able to move or be moved, not able to lie down, with pain radiating from my neck.  I had never experienced anything like this, and I couldn’t go on like this.

   I did not like Dr. Hansen. I sensed that she was afraid of me, afraid of me, and she was always either kissing up to me or arguing with me, on the defensive, angry that I would question her (when I was just asking for more information). I had heard of others complaining about her attitude.  Anyway, she was surprised to see all of us when she came into the small room. 

   After hearing about my condition, she recommended that I go to the E.R and be admitted into the hospital.  She told us to go to Pomona Valley Hospital – I didn’t like this hospital and had been going to another, quieter one – because she was in contact with it and could follow my progress. At the end of the visit, she looked at me with a mocking face, which my sister later said she saw and didn’t like at all. 

   (Months later, after not seeing her in the hospital after the surgery or in the four months I stayed at the Claremont Care Center, I went to see Dr. Hansen. When I asked her why I hadn’t seen her after she specifically told me to go to Pomona Valley Hospital so that she would know what was happening with me, she said she thought my sister took me up north. Whatever.  I got a new primary doctor and didn’t see her again.)    

   So that afternoon, my sister and an attendant took me to the E.R at Pomona Valley Hospital.  I have a vague memory of a doctor wondering why I was there, but I did get admitted.  I think it was at this time that we met Dr. Thom, a nice, soft-spoken, Middle-Eastern or Indian woman who I think was in charge of my case. 

   That evening, I was in a double-occupancy room on a hall that seemed, from my experience since then, to be for patients that didn’t need much care.  The nurse was a nice guy, who, for whatever reason – perhaps because I had an attendant spending the night with me – had me moved to a private room.  This was nice, but I was still anxious and didn’t sleep well. 

   The next morning, February 28, 2017, Dr. Thom came in and said I was being discharged.  My attendant that morning said this was great news, like we would go home and all would be well, I wouldn’t have any more pain, but I had my doubts, to say the least.  Something wasn’t right; I didn’t go to the hospital to spend the night and be discharged.  Really?  I tried to say so, but my attendant kept telling me to cheer up and fed me breakfast – yum, yum! 

   Then, things really started to happen. In preparation – celebration? – of my being discharged, my attendant and a C.N.A decided to bathe me.  As they were moving my body around, I suddenly felt a jolt, like a huge electrical shock, running down my back. 

   And my legs went numb, went dead. 

   I don’t know if I have told anyone about the jolt, the shock.  But, as I was being prepared for discharge, I kept saying that something was very wrong.  Finally, a neurologist, a tall, Italian man with a elegant name that I wish I could remember – it was something wonderful like Lorenzo Firelli - came. I said I had no feeling below my waist. He stuck a needle in my leg. And it didn’t hurt.  I couldn’t feel it. 

   As I remember it, the doctor literally stood up – he seemed even taller – and shouted, “Stop! Hold everything!” Almost immediately, at least as I recall, I was taken to get a M.R.I. A cat scan may have been taken in the meantime or the day before.

   I had never had a M.R.I. I was anxious, not really knowing what to it. I had a feeling I wouldn’t like it, and I was right.  I was put into a tight tube on my back – already difficult for me – and then it got extremely loud.  There was a variety of noises, lasting different amounts of time and coming on suddenly – exactly the kind that I’ve had difficulty with all my life.  I don’t know how long this went on, but it felt like forever. 

   It didn’t help that the two guys who were doing the M.R.I had no concern for me at all.  They couldn’t care less that I was scared, much less in pain. They reminded me of monkeys or two loompahs in Willy Wonka’s chocolate factory just doing their job. 

   After the M.R.I ordeal, I was taken to a double-occupancy room. It was dark, and there was a nice, Latino, male nurse who started to get me settled.  It seemed that almost no time passed before we learned I had to get another M.R.I, this time with color contrast. 

   My attendant David came along when I was taken down to the M.R.I room.  I was very anxious, and it really helped having him come. As I was lying on the gurney in the hallway waiting outside the room, I heard David crying. I can’t say if he was just crying about my having to have another M.R.I or if he was crying also about the last two horrific, exhausting weeks, about all the pain I’ve had, about how much had been lost in my life, in our lives.  Things were very, very serious. 

   Indeed, they were.  In what seemed like no time after I had the second M.R.I and was taken back to my room, we received word that I had to have surgery right away.  I needed emergency surgery.

   It turned out I had osteomyelitis, which I was told was an extremely rare bacterial infection in the bone.  In my case, it was in my upper spine – hence the pain radiating from my neck – and I needed spinal surgery, emergency spinal surgery. 

   I remember a doctor coming into the room.  He was Dr. Jose Rodriguez, who I was told was one of the best neurosurgeons around.  I remember giving him permission to operate on me. 

   I remember two or three of my attendants there making lots of phone calls to my family and friends.  I think I remember talking to my friend Carl.  I remember feeling that lots of people were thinking of me, holding me in the light as we Quakers say, holding me in a circle of concern.

   It was close to midnight, February 28, 2017, when I was taken to the operating room. The last thing I remember was being slipped from my gurney onto the table and then being put to sleep. 

 

   Three months later, on May 5, two months after being in the I.C.U for five days and in the hospital for another five days or so and while I was staying in the Claremont Care Center before finally going home in mid-June, I went to the see Dr. Rodriguez for a follow-up appointment.  I took with me a written list of questions about my legs being paralyzed and the burning pain I had.  He read them, then looked at me with kind, empathetic eyes and told me that I was lucky to be alive. 

   This was the first time I heard this, and it hit hard.  When I returned to the Claremont Care Center, I cried.  It was certainly not the first time I cried after my surgery, but it was like I was starting over. 

   I also learned sometime after the surgery that the osteomyelitis probably stemmed from an urinary tract infection, likely the one I felt coming that February afternoon in my backyard after the difficult catheterization that morning.              

What the Hell did happen - part 1

 

   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.