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?

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?

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.

Get in line

   “I don’t like this, John.  Not at all!”

   My attendant and I were getting back into my van after shopping at Trader Joe’s.  To say the least, it wasn’t your usual trip to the market.  And not because Trader Joe’s isn’t your usual market. 

   It was a recent weekday morning, shortly after 9. I usually don’t shop at Trader Joe’s, but there are things I like there – the frozen pancakes, blintzes and gnocchi, the baby greens and spinach salad with dried cranberries, candied walnuts and blue cheese and the pulled chicken, perhaps a lemon tart – and I decided to go there before going to Sprouts, where I usually shop. When we pulled up, I immediately knew this wouldn’t be a breezy in-and-out. 

   There was a line waiting to get in – what the English call a queue.  I had heard of lines outside of markets recently, but I hadn’t experienced any.  When I got out of the van, I saw that many people in the line had masks or bandanas over their mouth and nose.  Again, I had seen some people in recent days and weeks wearing masks, but not like this.  This was like something out of a dystopian movie or television show. 

   I was secretly hoping a clerk would just let me in, as sometimes happens in such cases, but no such luck.  I went down the line, and a women kindly offered to let me cut in front of her, about halfway down the line.  Even so, I wondered if I really wanted those pancakes. 

   Soon enough, though, I was in front of the line. (Really?  They didn’t just let me, the disabled guy, in?) I saw some people, just arriving, go up to the entrance and then try to enter through the exit, only to be told by a clerk to go to the back of the line.  I heard one clerk saying the wait was averaging a half an hour.  I panicked a bit, wondering if I should just get back in the van and wishing I had come a bit earlier, between 8 and 9, when the store was open exclusively to senior citizens and the disabled (I normally dismiss this as patronizing, and having this so early is ridiculous, but I had happened to get up early and could have left my house earlier).

   Again, the wait turned out to be not long at all, and my attendant and I were in.  My shopping went well – I got everything I wanted, except the lemon tart.  There were even eggs, which I hadn’t planned on getting but happily grabbed, since they tended to be in short supply at Sprouts.  My attendant was a bit upset that she had forgotten to bring gloves and that the store didn’t have them available, but she pulled her sweater over her hands and shopped that way. 

   Things got weird again when it was time to check out.  We waited behind a line of tape on the floor, and the clerk took the cart from us and rang up and bagged my items.  My attendant was then allowed to come forward and then permitted to hand over my debit card.  Emphasis, as my attendant pointed out later, on “allowed” and “permitted.” It felt like we were in prison, lining up for meds or some privilege. 

   “I don’t like being treated like I’m sick…or have cooties,” my attendant said when she got into the van to drive. 

   Me either. 

   (“Cooties?” Do people say “cooties” anymore?)

   Later, at Sprouts, where I couldn’t find sugar and baby corn and wondered if I could have found them at Trader Joe’s and how we’ve become a third world country where basic staples – sugar, rice, eggs - aren’t to be had, we heard a woman arguing with a man. 

   “You should be six feet away from me,” she snapped when he brushed up against her.

   “What?  You talking to me?” the man calmly asked, looking back at the woman. 

   “You need to be six feet away from me,” the woman insisted. 

   “You need to talk to a psych doctor,” the man told her, again calm as can be. 

   Is this where we’re at?  If so, I agreed with my attendant who looked at me and said we should get out of there.

   Indeed, I was happy to get home and to stay there.

Stir crazy

   I have to agree with political commentator and Washington Post Op-Ed columnist Ruth Marcus when she said on last Friday’s PBS NewsHour that President Trump’s saying that America should “get back to work” and “fill the pews” by Easter was the worst, most stupid and dangerous, thing “ever said by an U.S president.

   Wow.  But, yep, I agree. 

   Trump’s proclamation has been rolled back, and we’re now advised to all be on lock-down at least a week or two later, until the end of April. 

   Really?

   Like a week or two will help.  Like this will go away in a matter of days.    

   When all the medical experts, including Dr. Anthony Fauci, the Director of the Institute of Allergy and Infectious Diseases, who often appears on Trump’s coronavirus news conferences and courageously stands up to Trump and contradicts him, are saying that the worst is yet to come, that it will be months, not weeks, until we’re out of this.

   But, jeez. I know this is right. I know that we’re in this for the long haul and that the sooner we all take this seriously like a heart attack and all stay at home, in place, as much as possible, the sooner this will end, the sooner we’ll get out of this. 

   Yep, I agree.  But – really? – jeez. 

   When all this began, I was angry and in denial and saying “fuck it” and sneaking out, including to a movie on what turned out to be the last day before the theater, all the theaters around here, closed.  Then, I settled in, sort of like I was camping out at home, enjoying and thankful for Netflix and Prime and writing, posting here, more, sending out e-mails teetering between encouragement and despair,  getting caught up on business and doing bits of Spring cleaning.  I’ve also been getting more and more angry at Trump saying irresponsible and, to say the least, unhelpful things and the people, perhaps lead by his word, I heard and read about who are or were still going out, going to bars and parties or wherever, hiking and surfing in large groups. (It’s sad but evidently necessary that beaches and trails have been closed in the last weeks, although I’ve read that people are still accessing trails.)

   I read about a woman saying she’s “tired of Netflix.” How can you be tired of Netflix?  I’m constantly amazed by how much is on the site (not to mention Prime and plenty of other sites), by all the shows and films I keep reading about and hearing about from friends and on the radio.  I’m reminded of Samuel Johnson saying, “A man who is tired of London is tired of life.” But I am getting tired of watching television, of staying indoors, of not going out and about, seeing people and events. Is this the same as being tired of Netflix?  And if you’re already tired of Netflix, etc., at this point, it seems to me you’re in trouble. 

   On the other hand, I am more and more grateful that I can see and talk to friends online. It’s amazing to me that we can now do this relatively easily.  I recently read an article in the Los Angeles Times about how the coronavirus is making us even more reliant on our computers and phones, on our screens, which has both pros and cons.  Furthermore, according to the article, in South Korea and perhaps other Asian countries, there’s a culture and market for people who prefer to be alone.  I have to admit that, although I like seeing and talking to friends and getting out among people – even crave and to some extent thrive on it – there is a lot of time when I want to be on my own, alone, reading, watching, hopefully writing, going out, not having to talk, not having to engage.

   I’m hoping I’ll feel better, saner, more calmed down, less cooped up, when it gets warmer – the late winter and early spring has been unusually chilly here in sunny So. Cal., or my neuropathy has gotten worse, and I’m even more sensitive to the cold – and I can sit out in my backyard, a quiet sanctuary of greens and blooms where I feel far, far away.

NEWS FLASH: Today’s a big day.  Not because it’s April Fool’s Day – this is no time for fooling.  But because March is over, and it was the first month in at least 14 months that I didn’t have to go to the E.R. Something to celebrate, indeed!  (Now I’m praying that I don’t have a problem with my catheter or g-tube until this coronavirus crisis is over.  The E.R is the last place my attendants and I want to be.  Plus, with all the COVID-19 cases reportedly swamping the hospitals, I worry I won’t be able to get help with my little problems.)