Tuesday, October 6, 2020

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.              

Thursday, October 1, 2020

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.

Tuesday, September 22, 2020

What the Hell happened?

 

   Shortly after I got my new wheelchair about two years ago when I was working with physical and occupational therapists and a wheelchair technician, two clickers were Velcroed onto the gear box. Given the very limited use I have of my left arm and thumb – I have no use at all of my right arm and my legs – since my spinal surgery three and a half years ago, one is to enable me to more easily turn my chair on and off, and the other is to make it easier for me to change the speed and access the tilt function. They work pretty well. 

   Except when they don’t. 

   It’s not that the clickers don’t work.  They work fine.  It’s my arm that doesn’t work. 

   Not all the time, though.  There are times when my arm works okay, and I can use the clickers just fine.  Easy peasy.  There are even times when I can even press the buttons on the gear box. 

   But there are times – lots of times – when, for some reason (being too cold, too tired, not sitting right…?), I can’t get my arm down and can’t use the clickers which were supposed to enable me, which were supposed to make things easier for me.  (Hitting the clickers without hitting the joystick is also an issue.) I end up right back at being stuck, not being able to do anything and needing my attendant to do it.

   This is most frustrating, to say the very least, when, before the surgery, I had no problem pressing the buttons on the gear box and operating my wheelchair.    

   And so many other things.  Before my surgery, I was able to do them with no or little problem.  No special clickers needed.  (Although I did have some special equipment, such as my speech device and additional programs and attachments on my computer that made things easier for me.)

   I have been thinking a lot about this lately, about how my life is so different now, about how I used to be able to do so many things.  I notice how weird it is when I try to tell my attendants now what my life was like, what I was able to do, about all that I did, like go on camping trips, until February, 2017. It’s like they don’t believe me, like they roll their eyes at me and say “sure, sure.” At least this is how I feel when I try to tell them.  (In a weird way, this is a blessing, in that my attendants accept me as I am and aren’t sad and/or angry about all that they have to do for me.)

   But, as it is occurring to me, it’s also me who can’t believe what happened. 

   Yes, I’m frustrated, extremely frustrated.  And I’m sad, terribly sad. That I can’t press the buttons on my gear box and operate my wheelchair as I used to.  That I can’t turn pages or swipe on a tablet. That I can’t wipe my nose or flip on the light switch, open the door or take a cookie from the tin and eat it myself. And so many other tiny and not so tiny things that I could do before. 

   What I experience even more, I realize, is disbelief, that I can’t or don’t believe what has happened to me – like, “What the Hell happened?” As I recently explained to a friend, I don’t wake up in the morning thinking this.  No, it will hit me at random times, like when I have to ask an attendant to feed me a piece of candy, when my attendant positions me in bed like a rag doll or turns me from side to side at night, when my attendant has to assist me in having a bowel movement when I used to be able to sit on the toilet (after my attendant helped me onto the toilet – I was able to stand with my attendant helping with balance) and go on my own. I could go on and on with examples. 

   What the Hell happened, indeed! 

   I don’t know what it means that I’m experiencing this still three years after the fact.  Where does this put me on the stages of grief? 

Am I stuck at denial?  Friends assure me I’m not.  And I cried plenty during the first year after surgery (although, perhaps oddly, not for a while now).         

   As I’ve told friends, I wish I had been in a car crash or some other accident.  Then I would understand better, it would make more sense, why I ended up more disabled like this. I could get my head around that more than osteomyelitis, some weird infection that I’d never heard of, that got into my spine apparently after starting off as a urinary tract infection after a botched catheter insertion and that almost killed me.  Talk about hard to understand.  Or, if I had to have an infection, why couldn’t I have had cancer or something that I had heard of. 

   It’s kind of like this pandemic – seemingly a small thing that came at us almost out of the blue, or, more accurately, wasn’t prepared for or heeded properly, and now we are or should be going around wearing masks like in some sci-fi or horror movie, kids are staying home and having school online and millions are out of work, not to mention all those getting sick or dying, with perhaps, given our divisiveness over everything including masks and, yes, vaccines, no real end in sight. 

    What the Hell happened, indeed!

Wednesday, September 9, 2020

Going places while not going places on Zoom

 

   I’m back from Summer break. 

   And what a summer it has been.  The coronavirus continued to rage on – it didn’t just go away in the warm weather as President Trump predicted and despite his ignoring it in a sorry attempt to better his chances of getting reelected.  There has been lots of civil unrest, mainly peaceful protest over police brutality and racial injustice, calls for reforming and defunding, if not abolishing, the police.  Again, Trump has found a way to use this to save his desperate campaign, saying the unrest will only spread “to a neighborhood near you” if Joe Biden wins in November and more or less stoking whatever violence there has been by sending out the National Guard. Trump is also sowing doubts about mail-in ballots, needed to ease the spread of COVID-19, and even the beloved U.S Post Office in a pathetic effort to impact - sabotage? – the election.  Here in California, we’ve also had terrific heat waves – it was 114 degrees here in Claremont this weekend – and massive wildfires. 

   But, perhaps more than all this and more, what has stood out for me about this summer is Zoom.  At least among my circle of friends and acquaintances, Zoom has turned out to be a lifeline, allowing us to carry on without being total hermits.  It has also  opened up surprising new possibilities, new worlds.  All this, despite my nagging reservations about it. I wrote about this in the column below, which appeared in Friday’s Claremont Courier. 

   As for being back from summer break, that’s my intent, at least.    

 

     ZOOMING IN AND OUT OF SUMMER, 2020, FOR WORSE AND BETTER

   I have a confession. 

   I don’t like Zoom.

   A friend once said that he doesn’t “do” New Year’s.  I don’t do New Year’s either.  I don’t like staying up until after midnight and partying and getting hammered.  I don’t like thinking about the next twelve months and making resolutions and all that.  It’s all too scary. 

   It’s not like I don’t do Zoom.  I do Zoom.  I just don’t like it. 

   I find Zoom exhausting.  And frustrating.  And sad.  The people are there – yet not there.  I can hear and, yes, see them – and it’s not like T.V, because they can also hear and, yes, see me – but I can’t reach out and touch them. There is no human contact.  We can’t shake hands, can’t hug.  We are each in a box, a bubble, a cell.  It’s like visiting a prisoner and having to speak through phones with thick glass separating us. 

   Like I said, it’s exhausting – and frustrating and sad. It almost makes me feel more isolated, more lonely, like I really am in prison, locked up.  Almost.   

   I am okay on Zoom for an hour or two.  I can hang with that.  After that, I start to lose it.  I zoom out. 

   I don’t know how people who work at home on Zoom do it.  I would think, I would hope, they aren’t on Zoom all day.  They probably have meetings interspersed with desk work or whatnot throughout the day. Right?  I hope. 

   The same goes for students.  Doing classes all day online must be a challenge.  But they probably have classes at different times during the day or different times during the week, instead of one after another all day.  Or, as public school students in Claremont have recently started at least for now, they’re on from 9 to noon – not really all day. Also, they’re more used to looking at screens. 

   Then again, despite my frustrations with Zoom, despite all of its drawbacks, it is a lot better than the alternative. 

   Which is nothing. 

   In this time of social distancing, when we aren’t supposed to get together, aren’t supposed to have meetings, aren’t supposed to congregate be in crowds or audiences, Zoom has been something of a miracle, a godsend.  It is downright amazing and wonderful that we have this technology and are able to get together in this way. 

   Just imagine if we couldn’t.  Just imagine if this pandemic had happened twenty years ago.  We wouldn’t have been able to have meetings, have classes, have get-togethers online. 

   Now that would really be sad and frustrating.  It would be more than that.  It would be a disaster, even more of a calamity than what we’re experiencing. 

   Indeed, given all the sickness and death, all the unemployment and hardship on small business, all the disruption in school and so many aspects of life caused by this pandemic, Zoom is a tiny thing to get frustrated and sad about.  A stupid thing to be bummed out over. 

   I have been amazed, yes, at what I’ve been able to do on Zoom.  I have been able to stay at home and see a doctor. I have been able to take care of business and get together with friends (also on Google Hangouts). I have been able to attend Quaker meetings. 

   But it turns out this is just the beginning.  As I recently remarked to a friend, more and more events are happening on Zoom, with three that I knew of, in addition to morning worship, on a recent Sunday. 

   Earlier this summer, I was able to attend an annual five-day gathering of Quakers from California, Hawaii Nevada and Mexico.  Although I really missed going to Walker Creek Ranch in the serene, gorgeous rolling hills of rural Marin County, where we’ve been meeting in recent years, it was a thrill and a joy to see all those familiar, beloved faces in those Brady Bunch grids, those Hollywood Square, even with the fumbling with muting and unmuting.  And, yes, this also made me sad, but it was certainly easier and cheaper than traveling up north, all the more so since I’ve been more disabled after having  spinal surgery three years ago. I could have attended sessions from early morning (yoga) to 10 at night – there were even meals – but, again, I can only take so much Zooming and so limited my attendance. 

   Just recently, I attended a concert with Annie Patterson and Peter Blood, who compiled and edited the great songbook, Rise Up Singing. It was actually billed as a sing-along, but we were all muted, so that we wouldn’t be a complete cacophony of voices.

   Also this summer, I saw two play readings on Zoom, put on by the Open Fist Theater Company in Los Angeles.  One was Shakespeare’s A Midsummer Night’s Dream, and the other was a new comedy written by a company member called That’s F***ing Hot. Both were lots of fun, and it was amazing to see how well the actors worked not together but each in their own space.  (It was also fun to see a cat walking by in the background as Hermia lamented. I can write a whole column on what we see and don’t see in the background on Zoom.) Also, not having to drive to L.A was nice.

   I’m hoping that the colleges get in fully on the act and, in addition to classes, put some presentations – some talks, perhaps a few concerts, even a play – on Zoom.    

   So, yes, there are lots of nice things about Zoom, as irritating and tiring as it can be.  Another bonus with Zoom is that it forces us to focus.  It forces us to listen, to really listen to what is being said.  It’s like hearing a story on the radio and having to use memory and imagination to sense, to picture what’s being said. 

   This is most evident – and effective – in a series of conversations presented on Zoom by the Local Spiritual Assembly of the Bahai community. Entitled Claremont Speaks Black, this is a forum that allows Black residents of Claremont to speak freely and frankly on being Black in Claremont - something that needs to be heard in these days of civil unrest over racial injustice, including police brutality.

   This is good, hard work being done by the Bahais.  There have been two presentations so far.  One was with a Pomona College administrator and Claremont Police Commissioner, and the other was with a professor of Pitzer College.  They spoke of having to “dress up” when going out, even for a walk around the block, of feeling “at home” at the colleges but not in Claremont where Black men they know are stopped by the police for no reason, of everyone turning to look at them when they enter a restaurant or store in the Village. 

   Because we were there but not present, because we were muted and, for the second presentation, not seen, they were free to be open and say all this and more.  And we who were attending had to listen, really listen, use our empathy and our imagination, and were able to get a real sense, more of an understanding, of their experience of being in Claremont. 

   Just the kind of understanding, the understanding, at last, that Black lives matter, that we need at this time. 

   Like I said, this is good work.  The next session, on September 13, will feature Josue Barnes, who co-founded Claremont Change.  (E-mail Claremontlsa@gmail.com for more information and the link.  It’s sure to be worthwhile – all the more thanks to Zoom.