One step forward, three steps back

   Last week, I wrote that the coronavirus pandemic was creeping me out, if not freaking me out.  Well, now it’s straight-out freaking me out. 

   A few days after writing that Scripps College canceled all its public events, I learned that all the colleges here in Claremont closed.  Until the Fall.  Poof.  No more concerts plays, lectures.  No more of much of what makes Claremont such a wonderful, rich place to live. 

   What’s more, even my Quaker meeting shut its door.  And the day after I went to a movie even though I couldn’t go to meeting, which I thought was weird, the cinema closed. 

   This has been really hard on me.  Over the last year or so, I’ve been trying to get out and be in community more and more.  I’ve been fighting isolation.  And now I can’t go out.  Now I’m being isolated.  Many friends are even afraid to come over, mostly not wanting to get me sick, making me feel even more isolated. 

   It gets worse.  I went shopping this morning, and while I could get most of what I wanted, I couldn’t get such basics as rice, milk, pasta and bread.  Now I’m wondering what I’m supposed to do.  Will I get the medications and supplies that I need?  Will I get the help I need? 

   I’ve been having more pain than usual in the last few days.  I realized it’s probably from stressing out. 

   I’m less worried about the virus than the crazy way people are acting – panicking, hoarding, buying guns.  And I’m furious at the Trump administration for not making coronavirus tests available much earlier, unlike in other countries, which is why things are now so dire. 

   This all keeps feeling like a nightmare or horror movie – unreal.  It helps a bit to know that I’m not the only one stuck at home, isolated.  It’s not like when life was going on and I was in bed, looking out the window.  That’s the only thing keeping me sane. 

Community cure

   This coronavirus is creeping me out, if not freaking me out.  I’m trying to find the balance between panicking and hoarding and acting dumb like Trump and saying this is just another cold or flu.  I did buy two packs of paper towels and toilet paper, though.  The other day, Scripps College here canceled all its public events for the time being – pretty disturbing and depressing, but probably inevitable, as the college would look stupid doing nothing as U.C Berkeley, Stanford, U.S.C are switching to online classes.  But, on the other hand, Claremont McKenna College is still holding its public lectures. 

   Meanwhile, since long before the epidemic, I’ve been thinking of how we care for or not care for one another.  Here is my latest column, published in Friday’s Claremont Courier. 

                     AT EACH OTHER’S MERCY

   It wasn’t what I had in mind. 

   It never is what anyone wants, friends kept telling me.  Nobody wants to have to go to the hospital.  Nobody wants to be taken to the E.R. 

   But there I was, in the E.R. It wasn’t so much that I was in the E.R – that was bad enough.  I was there again, yet again. 

   This was the second time this year I was in the E.R. I had already gone once in January.  I was really hoping I would make it through February without having to go.  But no.  I was right on track to meet last year’s record, when I went to the E.R thirteen times. 

   As I’ve said before, they should just reserve a bed for me (preferably in a private room). “Oh, yeah, that guy. Right over there.”

   This trip lasted five hours.  Only five hours.  That was well short of the usual eight or ten hours.  In January, I was there all night.  Literally.  And at least I didn’t end up staying at the hospital, as I did for a week in December and three other times last year, once for three weeks. 

   Still, I didn’t get home until almost 9, when I was starving and finally able to have dinner.  And I wasn’t able to do pretty much everything I was planning to do, I was looking forward to doing, for those five hours.  Good thing that I was able to eat what I was planning on and looking forward to eating and that it didn’t take long at all to get ready. 

  Still, it was five hours, I felt, taken from my life.

   I have come to realize that this was perhaps – perhaps, hopefully not – a new norm in my life.  Let’s just say that this was one of the dramatic changes in my life since having to have spinal surgery three years ago at the end of last month.  As I have written about in recent months, the surgery left me much more disabled, needing much more help and having to adjust to, or find, a new life.  Yes, I was already disabled before the surgery but didn’t have all the medical problems I now have.  Before the surgery, I usually saw a doctor perhaps two, three times a year. Now, in addition to all the E.R visits, I seem to have a doctor’s appointment once a month on average. 

   As I said, not what I had in mind.  None of this was. 

   Then, as I was lying there in the E.R, something else happened that I didn’t have in mind.  I heard moaning and screaming and then saw someone writhing in pain on a gurney going by.  Nothing unusual there, perhaps – this was the E.R after all.  But it was disturbing.  Even more disturbing, from all the commotion and what I heard being said by the staff and sometimes the woman, including profanities as well as pleas and expressions of gratitude, it was quickly evident that this wasn’t a normal E.R visit. (Or was it?)

   After a short while, it became clear that the woman needed to go, and perhaps was having difficulty, going to the bathroom – did she have a bad urinary tract infection? – and I saw her being supported as she stumbled back down the hallway, apparently to the restroom. 

   Was this woman homeless?  Was she mentally ill?  Was she coming down from a trip, bad or good?  All of the above? Regardless, she was having a physical problem, was in serious pain and needed help.

   She continued to moan and cry out and to say “thank you, thank you” and to politely make requests (“May I have a female nurse?”). The male nurse kept urging her to use the restroom and told her that she would be taken to “another unit” where “we can give you a shower”.  And the commotion continued, with a staff member wondering if a gown should be used when dealing with the woman and a woman complaining that there was “a woman in the men’s room.”

   I heard all of this and saw bits and pieces of it as I laid there, waiting for the help I needed, wondering how long it would take, thinking about I was once again having to rely on the care and expertise of others, and I wondered.  Was this woman getting the help, all the help, she needed? 

   Why was there such a commotion, in this place, of all places, where anything could happen?  Was the staff really prepared to deal with this woman?  Or was it that the staff was not prepared for such situations? 

   After all, I have read that hospitals and jails deal with and accommodate the homeless and mentally ill on pretty much a steady basis.  It is said that the homeless and mentally ill routinely go in and out of hospitals and jails, sometimes going from one to the other.  It’s also said that this is more or less passing the buck, that this isn’t the way for the homeless and mentally ill to get the help that they need. 

   Was the woman, I wondered, not what the E.R staff had in mind, just as she wasn’t what I had in mind, that afternoon, that day, ever?  Why did it seem like this?  I wondered as I laid there waiting.

   Let’s face it: the homeless and mentally ill are never what we have in mind.  It is upsetting when we see someone walking by aimlessly, muttering or shouting to no one.  It is disturbing when we drive around in Los Angeles or Pomona and see tents lined up along the sidewalk or clustered in medians.  

   It’s not what we have in mind. 

   It’s certainly not what we have in mind here in Claremont.  But, as was discovered about ten years ago after years of denial, a fair number of homeless people, some of whom are probably mentally ill, are in Claremont.  We just don’t see many of them.  Many spend the night in Claremont, where they feel safe, then make their way to Pomona, where there are more services for them (not to mention perhaps less notice from police), for the day. 

   We all need care, we all need help, at least every once in a while.  Some, like me, may need more assistance than others, and some may need even more and more. As Governor Newsom pointed out at length recently, we have the responsibility to see that everybody, especially the homeless, gets the support they need.  We are at each other’s mercy. 

   Or, as I once heard it put and as should be all the more so here in Claremont, we are each by all the others held.

For all to see

   Netflix has done it again.  Following films such as the extraordinary The Sessions, about a severely disabled man gaining sexual experience, and the less-successful-but-still-significant Speechless, the ABC sitcom featuring a boy with Cerebral Palsy (played by an actor with C.P), as well as its own Special, a remarkable comedy series about a young gay man with C.P (played by a gay actor, yes, with C.P), the online network has now come up with 37 Seconds, a most adventurous film from Japan. 

   37 Seconds tells the story of Yuma, a young woman with a beautifully expressive face and always bright smile who has C.P, uses a motorized wheelchair, lives with her smothering single mother and is a manga artist.  Tired of being the hidden assistant to an anime artist and “You-Tube sensation,” Yuma tries to sells her work to an adult anime publication but is told by a kind-but-frank manager that she needs to have sexual experience in order for her work to be genuine. 

   This disappointing and daunting request leads the ever-charming, determined and fiercely independent Yuma (reportedly played by an actress with C.P) on an amazing and quite unexpected journey, far beyond her initial venture into the red-light district and encounter with a male prostitute.  If this sounds heady enough, hold on to your seat.  This film doesn’t hold back and is bracingly edgy and intimate

as we see right off in the first scene when Yuma’s overly protective mother, who Yuma will later fight with, helps her to undress and bathe. 

   Sure, this film, as with many films, glosses over pesky details (like, does Yuma really have the money to pay for a prostitute and a motel, not to mention – spoiler alert – flying to and taking the train in Thailand?). And yes, Yuma is considerably more able than I was even when I was less disabled (for instance, her speech is normal, although soft, and she has far more use of her hands, with the ability to draw, etc.).

   Even so, it is, once again, remarkable to see someone like me on the screen.  Seeing someone who is significantly disabled – all the more, someone with Cerebral Palsy – portrayed more or less realistically gets more and more powerful. (I would have said remarkable again, but that implies something exceptional, and these portrayals are becoming less exceptional, which is what makes them so powerful.) Seeing portrayals like this is validating, liberating and empowering.  (Is this another way of saying – ugh – inspiring?  Okay.  So be it.  Also, I’m just waiting to see a character with C.P and with impaired speech who actually talks.  That’s coming – no doubt.)

Still here

   I recently wrote another column for the Claremont Courier which follows below. The fact that I’m continuing to write these columns says a lot. 

   It also says a lot – it is at least painfully ironic - that when the column came out in the paper a week and a half ago, I was in the hospital – again.   

                KEEPING UP APPEARANCES  

   “You’re alive!”

   I thought my traveling companion would die trying not to laugh or fall over in shock when the woman exclaimed this as he and I entered the motel’s front office. I had made reservations for the night, and this was the first night of his first trip with me.  When he had taken the job with me as one of my attendants several months earlier, he knew it would be some kind of adventure, but, clearly, he had no idea how much of an adventure it would be. 

   I had stayed at this motel a year earlier, and the same woman was at the front desk when a different attendant and I had checked in.  It was in San Jose – not that we were there to take in whatever (if anything?) it has to offer, but hotels there are much cheaper than those in Santa Cruz, one of my favorite spots and therefore one of our stops on that jaunt north, and it was a relatively short drive away on the scenic 17, at least if we timed our commutes to avoid the notorious traffic.  (I guess hotels aren’t the only things that are cheaper in San Jose.) 

   Although I was long used to people reacting to me in some unusual way, this was one of the most outlandish and brazen.  I couldn’t blame my companion for being bowled over.  After all, I may have been disabled and severely so, but I was in perfectly good health.  There was no reason to be surprised that I was still alive. 

   This was not long after I turned 50 and at least a few years before the spinal surgery I had two years ago that left me considerably more disabled but also - as the surgeon made clear to me later, leaving me in tears – saved my life. 

   “You’re alive” indeed!

·         *

   “It’s good to see you back in the land of the living!”

   Someone recently said this to me.  I could have been bowled over or have taken offense.  But I wasn’t and didn’t.  I just laughed, taking it in stride, as the more polite, more understanding “You’re alive!” that I knew it was. 

   It was a Pilgrim Place resident who has known me for some years who said this.  I was at the recent festival there, having gotten there myself in my chair, very much feeling back in the land of the living. Not only have I been going out more and more on my own, at least when it is warm enough with the neuropathy I now have (above 80 degrees – the Pilgrims were sweating it out this year, with the temperature being considerably higher for the two days of the festival), but, as in this case, I have also been venturing further and further.

   She went on to ask me if it was worthwhile – putting up with all the pain, the infirmaries – and to say that this is a hot topic at the retirement community.  I could indeed relate.  I’m not nearly as old as the residents there, but, as I have mentioned recently in these pages, it has been said that it’s as if I got old very quickly when I had the surgery.

   Yes, there are days when the pain in my legs and hands is particularly bad, when I have even less energy, days when I do wonder if it’s worthwhile.  Yes, with all the doctor visits and the many  trips to the emergency room – I have said that they should reserve a bed, preferably in one of those private rooms, for me (“The John Pixley Room”) – and the three (so far and hopefully only) hospital stays this year after going to my doctor maybe once or twice a year, my life has definitely changed, even if I’m not all that much older. 

   Yes, many people have expressed surprise that I’m still around, all the more so since I began appearing again in these pages after two years.  And, yes, I sometimes agree with them in being surprised that I’m up and about, much less still here. 

   While I’ve come to learn that my life will never be as it once was, that my legs will never regain sensation and what agility they did have, after hoping for the first year or so that my body would return to its former state, I’ve come to realize that this shouldn’t, that this can’t stop me from having a life.  If I can’t have my old life back, well, it was time to find and start a new life. 

   As I have written about in these pages, I’ve been attending concerts, including now at the college.  Music fans should know that we have an incredible bounty of free concerts in our small town, all the more so with the colleges and their many free performances – unusual, and unusually special, as I’ve come to discover. 

   I’ve also made return appearances at the Athenaeum at Claremont Mckenna College.  While I’m not going nearly as much as I used to, I have enjoyed the – yes, free, again – talks by the likes of Tara Westover, the author of Educated, a riveting memoir about growing up as the daughter of Morman survivalists in Idaho opposed to public education (and going to doctors) who went on to attend B.Y.U and then earn a doctorate at Oxford University in England; Samantha        Powers, President Obama’s U.N Secretary whose book, A Problem from Hell: America in the Age of Genocide won the Pulitzer Prize in 2003; and Haben Girma, a deaf and blind woman who was the first such person to attend Harvard Law School (as she recounts in her recently published book, Haben: The Deafblind Woman who Conquered Harvard Law).

   It has been a real joy to be able to go to, to show up at these events, as well as at movies at the Laemmle Cinema in the Village and plays at Pomona College and the as-good-as-L.A Ophelia’s Jump theater company’s venue just over the border in Upland.  Sure, I wish that I wasn’t so disabled now and that I was able to do all that I used to.  I wish that I had my old life back, but I’m very glad that I’m now able to find, to make a new life for myself and that here in Claremont is so much the perfect place for doing so.