T.V in a pandemic

 

   It is interesting to see how several television shows are incorporating the pandemic into their story-lines. I wonder how this will go over. 

   “The Connors” and “Black-ish” are dealing with the pandemic with humor, finding funny, cleve, refreshing ways to reinforce proper COVID etiquette.  “This is Us” incorporates it in a very straight-forward, non-intrusive ways, with characters simply wearing masks when out among others. On the other hand, at least in the first two episodes this season which deal explicitly with the pandemic, “The Good Doctor,” because it takes place in a hospital, is a sad slog, like watching a Frontline documentary, with patient after patient dying and the doctors, whether suited up like astronauts or at home in despair, exhausted and frustrated.    

   It’s tricky.  On the one hand, showing the pandemic makes sense, and not showing it would be weird.  It can also model ways to deal with it, like wearing masks and finding other ways to do things like celebrate holidays.  On the other hand, television provides an escape, which would indicate that things on television shows should go on with life as normal, without COVID.  Or would this just be depressing, a reminder of what we’re missing?

Treats amid the tricks

 

   Below, just in time for the aftermath of Halloween and for tomorrow’s dramatic, hopefully not traumatic, election, is my latest Claremont Courier column, seeing some treats amid all the tricks, hope in the hopeless. 

   Meanwhile, a week before Halloween, I had my own horror story when I went to the E.R and ended up in the hospital for 4 days with a bad urinary tract infection.  This was bad enough (these urinary tract infections will be the death of me, I swear!). What was worse, way worse, is that, because of COVID, my attendants weren’t allowed to stay with me.  This means that it was extremely difficult to make myself understood, that I couldn’t reach the call button most of the time, etc.  Some of the staff were kind and really tried to understand my speech and accommodate my needs.  Others ignored me for hours, because they couldn’t understand my speech, despite my crying out for help.  I went home with my right shoulder hurting, because I was left on my side for too long. 

   This was terribly upsetting, traumatic, a real nightmare.  After I came home on Tuesday evening, I learned that my rights were violated, and I’m filing a complaint and writing a letter to the hospital. 

   This is a time to not just sit there but to take action.  Not just me, but all of us. 

 

READING THE SIGNS OF THE TIMES ON CLAREMONT STREETS

   Josue Barnes was walking home from school one day.  He was a student at Claremont High School, where he played on the football team and earned good grades – good enough to get into college and then go onto a prestigious medical school back east, where he is currently a student. 

   On that day, he was walking along the sidewalk, heading home as usual.  Except on this day, he noticed a white man walking on the sidewalk towards him, carrying a briefcase. 

   Why did it matter that the man was white?  Because Josue Barnes is Black, and, apparently, that mattered to the man. 

   The man didn’t know that Josue Barnes was a student at Claremont High School, a student on the football team, a student earning good, college-worthy grades who would eventually attend medical school.  All the man knew was that the young man, the kid, walking up the sidewalk towards him was Black. Apparently, that mattered.  Big time. 

   It mattered enough, it mattered so much, that the man crossed the street to walk on the other side. 

   “And, remember, this was Indian Hill Boulevard,” said Mr. Barnes when he spoke in September as that month’s guest in Claremont Speaks Black, the local Bahai community’s monthly series on Zoom featuring Black residents of Claremont speaking on what it’s like to be Black in Claremont. “And you know how wide and busy Indian Hill Boulevard is.”

   Mr. Barnes is the co-founder, with Noah Winnick, a white C.H.S alum, of Claremont Change (Claremontchange.org), advocating racial equality and justice in Claremont, in the wake of the George Floyd killing. During the Claremont Speaks Black session, he spoke of being shocked that a white man, especially one who appeared intelligent, would go out of his way to avoid him, a hard-working student, because he is Black.  He said that this incident was a turning point in becoming aware that being Black makes him different and treated differently. 

   Later, when I told some friends here in town about this incident, they gasped, shook their head, rolled their eyes. 

   This really happened in Claremont?  Really? 

   Really. 

   It was definitely eye-opening to me. It’s one thing to hear talk of Black people being treated differently, treated unjustly, treated inhumanely in Claremont – one needs only mention Irwin Landrum, killed by Claremont police – but it’s something else entirely to hear a Black person talk about being subjected to the different treatment.

   Thanks to the local Bahais for giving us this opportunity. (The Claremont Speaks Black series is also a response to the sustained protests this summer after the Floyd murder in Minneapolis against police brutality and racial injustice.) 

   I am also grateful to my friends’ gasping, head-shaking and eye-rolling – shame, shame! – when I told them what Mr.  Barnes had experienced here in Claremont.  I wasn’t alone in being shocked, embarrassed, outraged, ashamed, hurt. 

   There have also been other signs, literal and otherwise, that I have been grateful for in my limited outings around my neighborhood and around town in recent weeks. 

   For one thing, there have been all the yard signs. I have seen a few Claremont Change yard signs, speaking of Mr. Barnes, here and there.  The message for equality and justice is getting out there.  I have also seen Claremont Cares yard signs, encouraging mask-wearing to slow the spread of COVID-19. It’s nice to see these signs, but it would also be nice if they were universally followed.  (For every day I’m encouraged by people out wearing masks, there are days when I’m disappointed – no, horrified – to see people, lots of people, not wearing masks.  And don’t get me started on the people eating at restaurants, even outside.)

   There are also the Black Lives Matter signs popping up in front yards. It’s great to see this support, although this is only a tiny step and will not end racial injustice.  Then again, it says something when one is the only one on the block to have a BLM sign.

   These signs join those saying, “We believe Black lives matter…love is love…no person is illegal…science is real…” – a simple proclamation as protest.   

   Then, with the election, there have been the candidate signs proliferating on front lawns and various other strips of land, vying for attention, like the candidates themselves.  I have seen signs for the presidential candidates – Biden much more than Trump in the area I frequent – but, perhaps appropriately and definitely to my relief – the vast majority have been for City Council candidates. 

   Maybe because, for the first time, the election is for districts rather than city-wide, the signs seem more personal, like a neighbor calling for our support.  There is a small-town charm to this, without the irritating clamor of the hand-painted signs for student council candidates plastering the walls and every other surface on campus (nothing charming about that).

   Even more charming – and poignant – were the signs seen on many front yards beginning in the late Spring congratulating graduates, primarily from Claremont High School but also from El Roble and even elementary schools.  This was one sweet way of making up, or trying to make up, for graduations and other recognition ceremonies squashed by the pandemic. 

   Another sign of the times, perhaps inspired by the pandemic, is furniture, toys and other items being left on the sidewalk for others to take for free. I see this as people reaching out and helping one another, in a safe way, during this difficult time.

   Finally, there are the Halloween decorations.  I have seen more and more of these in recent years but nothing like this.  It could be despite the pandemic putting a damper on trick-or-treating and other celebrations, or it could be because of it, especially with the City, encouraging safe ways of celebrating, sponsoring a decorating contest. 

Or it could be both. 

   Whatever the reason, it has been, from what I’ve seen on my limited outings, definitely a treat, a sight to see.  There have been the usual pumpkins and jack-o-lanterns, along with skulls, skeletons and spider webs, along with ghosts hanging from trees, here and there.  There have been plenty of scarecrows lounging on front porches and in front yards, some doing things, like the one reading a book next to a little library.  Some yard displays have been incredibly creative, involving quite a bit of work, like the two scarecrows on Mountain Avenue playing badminton or the party on West Point with dancing skeletons, accompanied by two seated, banjo-playing, pumpkin-headed scarecrows.       

   In all of these, I’ve seen signs, encouraging signs, of community

 

at a time when there hasn’t been much.    

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.