Monday, April 27, 2020

Long-hair hippie freaks (emphasis on freaks)


   So get this.  The young attendant I recently mentioned, who has friends his age who are defying the stay-at-home edict and going out and getting together and posting it online, now tells me that there are “long-haired hippie guys” he hears from who are saying that the coronavirus “isn’t real” and that being out in the warm sun will cure it, etc.  Putting aside how reckless and dangerous this is, how it puts their loved ones and others in danger and how the longer they do this, the longer this home confinement will go on for the rest of us – wow!  (Don’t get me started on the Georgia bowling alleys and tattoo parlors opening up and the people going to the E.R after drinking bleach, as per our president’s ramblings.)
   Really?  Are these the same people who were so passionate, so fired up about Bernie Sanders, the same Berners, who voted for, yes, Donald Trump instead of Hilary in 2016? You read that right.  I did a quadruple-take when I read about it in the Los Angeles Times. I still, still, still don’t get this, still can’t wrap my head around it.
   It’s bad enough that I’m sitting here shirtless in my cut-off overalls, wondering if we’ll be on lock-down this summer.  I don’t want to think about history repeating itself come November.

Wednesday, April 22, 2020

A war of love


   Last week, one of my attendants told me that some of his young friends are ignoring the stay-at-home edict and going out and getting together and partying – and posting it online.  I got very alarmed and upset.  It made me quite angry.  These young people are being foolish, thoughtless and selfish.  They may well not get very sick or sick at all from the coronavirus, but they can very well spread it to those, including loved ones, who can get very sick and even die from it.  Not only that, the longer they do this, the longer this crisis will go on and the rest of us will be suffering and going crazy on lock-down.
   I have even less patience for those Trump followers and Tea Party-types who are going out and protesting, claiming that the stay-at-home edicts are violating their civil and economic rights and, in the process, putting themselves and, more importantly, their loved ones and the rest of us in danger and stuck at home for a longer time.  I get it that folks are angry about not being able to work and earn money for food and rent, not to mention going stir-crazy, but there are people getting very sick and also dying.  There are also those crazy pastors who are going ahead and holding in-person services, claiming freedom of religion.  And also our president, who, contradicting members of his administration and his health experts, sends out messages encouraging all this. 
   A lot of things are testing my patience these days.  I am getting impatient with staying at home.  (No, I’m not tired of Netflix, but I’m getting tired of watching T.V – subtle difference.) I’m getting really impatient with some of our national leaders, including Trump as Exhibit A, who have not been helping and who have worsened the situation. I’m even getting impatient with – I hate to say it – those who are even less tech-savvy than I am and are still having difficulty with Zoom.  I’m sorry – I’m probably just getting grumpy. 
   So, how do I deal with all this impatience?  How do I keep sane and not impossible to be around?
   I am finding it helpful to think like we are at war. It seems that things would go much better, more smoothly if we all had this outlook.  This is probably a weird thing for me to say as a Quaker, but we are not actually fighting, and the enemy isn’t a nation or an idealogy.  In this war, the enemy is a virus, an illness, and, no, the government isn’t trying to take over, take control and take away our rights, but we are being asked to help in not letting this enemy, this virus, do more damage. 
   Like with rations during World War II, we need to, yes, give up certain privileges, certain rights, to stop the virus from spreading so much and to protect those, including loved ones, who are more vulnerable to the virus.  The more this is done, the sooner this will be accomplished and this will be over for all of us. If we can all understand that this is about love, about caring for each other, and not about suspecting each other and knee-jerk decisions to stand up for ourselves, this will be so much easier, so much calmer and less stressful for us all.

Monday, April 20, 2020

Daring to hope


   How dare I? 
   That’s the way I feel. That’s how I feel as, when thousands are getting sick from the coronavirus and hundreds are dying after brutal days of isolation and intubation in swamped hospitals, when millions are out of work and wondering how they’ll pay for rent and food because of necessary stay-at-home orders, when going to the market is a spooky, every-man-for-himself experience, I get excited about finding new ways of connecting with friends and groups, am happy to be able to enjoy a vast array of movies and shows on television and find hope and inspiration in how people are helping and working with each other in unique, creative and exciting ways. 
   That’s how I feel as I wrestle with these two realities that we are facing these days.  How dare I, indeed. 
   This came up in a column I wrote that came out two Fridays ago and which follows.  It is based on a recent post that I expanded.


     MEMORY, NETFLIX AND HOPE IN A TIME OF CORONAVIRUS
   Years ago, I wrote a piece that I entitled “Growing Up and Out at Camp,” about going to Camp Joan Meier on the coast above Malibu and other summer camps for disabled kids.  I opened by describing a camp dance at Joan Meier, at which the arts and crafts director, a young woman named Chris who I had my eye on stood me up from my wheelchair and held me up as we gyrated and sweated through the song, which turned out to be the long version of the Doors’ “Light My Fire.”
   I wrote about how Chris and the other hippie-ish, young people who worked at the camp, who were paid a pittance and had to love the exhausting work that they were doing, let me, away from my protective parents for two weeks each summer, have fun, try new things (sing at the talent show...). I wrote about how they let me explore and about how going home was always so sad (I’d mope, if not cry, for days afterwards).
   I wrote this, as I said, years ago, over 30 years ago, when I was taking a creative writing class at the Joslyn Center.  I had just begun to grow a beard, another step to becoming the man I was to be, one in a series of steps that I’m more and more aware of beginning in those days at camp.  It was long before I began writing for the Courier, long before I came out as a gay man, long before a spinal surgery three years ago left me far more disabled, long before this current pandemic upending our lives.   
   All this came back to me, came gushing back to me in wave after wave, as I watched Crip Camp, a documentary that recently premiered on Netflix.  The documentary is about Camp Jened, a summer camp for disabled kids in the Catskill Mountains from the 1940’s and 1970’s. One of the film’s directors attended the camp when he was growing up and got hold of a remarkable treasure trove of black-and-white footage from that time and also interviewed a number of former campers and staff members.  Seeing the footage from the camp and hearing about all the adventures and all the freedom that the campers felt (not only were there no stares, there was no disability hierarchy – with those with polio at the top, because they look and talk “more normal” and those with Cerebral Palsy are at the bottom) is incredible enough.  This alone is quite satisfying and sweet, enough for a film. 
   Even more extraordinary is how the film traces how some of the campers, like Judy Heuman, went on to be leaders in the disability rights movement, with a number ending up in Berkeley, the hotbed of activism.  The film makes the point that they were inspired by their time at camp, where they were free.  The staff had a big part in this.  I don’t know if they intended to groom future rights activists; they probably just wanted disabled kids to be able to be kids.  However, Camp Director Larry Allison, who doesn’t look at all like what one would imagine, does say, “The disabled aren’t the ones with a problem.  The non-disabled are the ones with a problem.” – an astonishing notion at the time, one that would be a major principle years later in disability culture and studies. 
   I do wish the first two-thirds instead of just the first third of the nearly two-hour film was comprised of the camp footage – I just loved seeing it and the memories it brought back, and I already knew the movement history – but it is a most compelling, comprehensive and educational history.  The end shows a few campers returning to the site of the camp, as well as pictures and footage and life-span dates of campers who have died, with Neil Young’s “Sugar Mountain” (part of an excellent, evocative soundtrack) in the background.  This may be the most breath-taking, poignant sequence.
   Camp Jened appears to have been somewhat or much less structured, with the campers left to decide how to spend their time and even to prepare a meal when the cook is off, than the camps I attended. Also, I wasn’t involved in the disabled rights movement, but I did very much make my presence known and forged my path forward here in Claremont.  And I have a close long-time connection to Berkeley through family and friends (also, my dad, who taught for years at Harvey Mudd College, went to Cal and started telling me about the “rolling quads,” the first disabled students there, when I was a child, giving me something to strive for, even if I ended up at U.C Riverside instead).       
   To be honest, what I love more than everything else that I love about this documentary is not only seeing but hearing folks like me, with severe Cerebral Palsy, with speech that is difficult to understand, presented to a wide audience. This is a door opening to being acknowledged, accepted, understood. As is evidenced with going to camp, nothing else is more liberating and empowering. 
   Kudos to Netflix for bringing this eye-opening, uplifting, inspiring documentary, this balm, in these sad, crazy days.  I am thankful for Netflix, Prime and other streaming services in this time of distancing and isolation, when the colleges are closed until the Fall and, poof, there are no more concerts, plays, lectures and other events.    
   Yes, this is a sad, crazy time, unlike I and most of us have ever seen.  It is a time when many people are getting sick and many are dying, when many are out of work without a date for returning and the economy is going off a cliff.  It is a time when we can’t get together with friends and even family, when we wear masks to protect ourselves and we eye each other with suspicion, when a trip to the market feels like being in a post-apocolyptic scene, with people standing in line six feet apart, empty shelves, fights over the last carton of milk. 
   Even so, I have found a surprising amount to inspire and give me hope. With few people commuting, the skies are clearer, and, unlike in normal times, places are being found to house and quarantine the homeless without the usual sometimes endless bureaucratic and litigious snags.  A friend put on an online showcase for queer performers, people are making masks to donate and I have found solace and renewed vigor in being with friends and attending meetings on Google Hangouts and Zoom.
   I wrestle, however, with having this inspiration, this hope, when so many are dying and many are mourning alone. Is it right – is it okay – to enjoy these glints of light when we see, are surrounded by others engulfed in despair, in the dark?  I can’t say for sure, but I do think of not recovering but finding life again, finding another life, after my surgery three years ago. 
   I think of the video that I sent out to friends recently of George Harrison singing “All Things Must Pass.” I also think of the Julian of Norwich quote that I have on my wall – “All shall be well…and all shall be well.” Yes, as much of a cliché as it is, this too will pass, and, soon enough, the big news headline will be the newly elected disabled mayor or gay president. Or how about just the big rainstorm coming?

Monday, April 13, 2020

Coronavirus plusses and minusses


Two plusses:

1.  I’ve been writing a lot. Look at how much I’ve been posting lately, for one thing.  This is probably a result of not going out, except for once a week, and having lots of time to spend.  Writing gives me structure.  I’m almost back, more or less, to the schedule I had before my spinal surgery three years ago, when I spent most mornings writing, so, ironically, it feels like a return to normalcy.  Also, it also keeps me sane, even as I’m writing mostly about the coronavirus and its impact.  It’s like writing about the coronavirus gives me some control, if not over or of it then of how I think of and deal with it. 

2.  With nothing going on and everyone – well, almost everyone – following the stay-at-home rules, I have no reason to feel so sad or guilty about not going out.  I like, crave, going out and being in community, keeping up with concerts, performances and whatnot, but, to be honest, it’s hard and tiring.  It’s easier, really, to stay home and, yes, lie down for a few hours in the afternoon or shortly after dinner and watch Netflix or whatever.  Now I don’t feel guilty about doing so.  I do wonder, however and with some concern, about how I’ll feel once the stay-at-home rules are lifted and there is once again a steady schedule of events for me to attend. 

   This is a good segue to a minus.
   I’ve been wondering about something: On the one hand, we keep hearing that the COVID-19 cases around the U.S haven’t peaked yet, that the worse is yet to come.  On the other hand, the stay-at-home orders are scheduled, for the most part, to be lifted at the end of the month, as if the coronavirus will suddenly, as Trump has predicted, go away. 
   But – wait – at least in Los Angeles County where I am, the stay-at-home edict has been extended to May 15. I find this oddly a relief – not just because it’s an excuse for me to stay home and lie down but more so because it just makes sense. 
   Then again, what will happen when the novelty of this camping out at home wears off, when the honeymoon, with the excitement over Zoom meetings, YouTube concerts and the like, is over, and folks get really restless (as if they aren’t already)?  What happens when this isn’t an all-in-this-together social experiment and is just a health and economic disaster?

Thursday, April 9, 2020

Another spring forward


   It has happened again. 
   Last year, at about this time, I decided, literally overnight, that I was through with convalescing.  I decided one morning to get out of bed and spend all or most of the day up in my chair.  I also decided to begin to go out on my own, and I soon had my bed moved from the living room back into my bedroom where it, by definition, belonged and began posting here again after two years. 
   It felt like a miracle, an overnight miracle.  It felt freeing, liberating.  It felt right.  (Go back and read my post then.)
    This Spring, I haven’t yet gone out in my chair, partly because it has been unusually chilly here in sunny So. Cal. (my neuropathy has made me much more sensitive to cold, and my arms tighten when I’m cold – plus, it has been, like all this week, unusually wet). Also, I’m debating whether it’s safe for me to go out during this time, although I believe and suspect that, as we’re told, a solitary stroll is okay.
   However, another overnight miracle, one that feels freeing and liberating, that feels right, has happened.  After much thought on Tuesday evening, I decided on Wednesday  to start taking liquids and medications by mouth – and not to use the g-tube. 
   I decided this for two reasons.  One is that I’m tired of the hassle of using the g-tube, and I miss drinking juice, tea… The other reason is that I’m very worried, yes, terrified of the g-tube falling out and having to go to the E.R, the last place I want to be with COVID-19 – and will they even help me? (Funny how this pandemic, as horrifying as it is, keeps causing, inspiring positive changes.)
   The trick is for me to take in enough liquid, either with a straw, ideally, or with a syringe, to help prevent a U.T.I or prevent them from happening so often.  It’s a lot, and, before my surgery three years ago, drinking from a straw was easier, and I had a big bottle of water attached that I sipped from all day in addition to the juices and teas I had at meals.  Also, as I discovered last night, drinking in bed is too difficult (I get too much air in my stomach, so I may have to keep using the g-tube at that time, which means I can’t just get rid of it, which feels like a failure and is really disappointing. 
   But it’s nice not using the g-tube during the day, and that apple juice, orange juice and raspberry/pomegranite herbal tea sure tasted good.