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.)

Seeing my life, the world change at camp

   Years ago, long before I began this blog, 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 (this was before I had any inkling of sexuality), stood me up from my chair 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, about how going home was always so sad (I’d mope, if not cry, for days afterwards), about how I strongly feel that I began to be who I became, who I am today, at camp.

   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, following right along in the door-busting steps of Special and 37 Seconds which also premiered on Netflix and which I have written about in earlier posts.  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 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).       

   Two scenes stand out for me.  One is a former camper saying that one of his favorite memories of camp was of a girl he like putting her hand “on my cock.” The other is a scene at camp, where a group is having a discussion around a table.  One girl speaks, her speech extremely garbled, all but impossible to understand (there aren’t even the subtitles that are provided in other cases, leaving us all feeling bewildered, lost, stupid).  A counselor asks if anyone has understood her, and a boy with impaired but less impaired speech, interprets. I found this tiny moment of mutual compassion and assistance, of the disabled helping the disabled, to be tremendously, surprisingly moving.

   But, 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.

Vital signs

   It is hard not to feel hopeless during this pandemic. I realized last night that I’m now feeling the same way I felt when I was in the nursing home for four months after my spinal surgery three years ago – like I was in jail.  Except now, it’s even worse, because friends won’t and shouldn’t come over.  My world feels like it’s getting smaller and darker (And I worry about when this will end, especially when I see people out and about and friends tell me about seeing bars packed, despite there being a statewide shelter-in-place order.)

   So, as two friends have asked me, where is there hope?  Where is there light?  Is there any hope, any light in all this?    

   It turns out that things may get better because of this crisis.  For example, here in Los Angeles County, authorities are finding housing and shelter for the homeless within weeks.  This is a process that usually takes months or years, sometimes forever, dragged down by protests and litigation, fueled by NIMBY concerns, residents and businesses not wanting the homeless in their area or town.  Concerned about hygiene, stopping the spread of the coronavirus and also the need to quarantine, the state has been buying up hotel rooms and providing campers and trailers and the county is making over 40 recreation centers available for use as shelters, all in a super-expedited process.  Perhaps, when this crisis is over, this will be a model for dealing, finally, with what has been, up until now, arguably the top crisis in the area. 

   Another example of social improvement coming out of this pandemic can be seen in a friend of mine setting up an online show enabling queer musicians and performance artists to make money when live shows aren’t allowed. This is truly inspiring, showing a can-do spirit and also that at least some performances can be put on relatively cheaply without costly venues and staff.  Likewise, many people, including myself, are learning or being reminded that they can work, have meetings – even Quaker meetings – and visit and socialize – and party – with each other online.  This isn’t the same as in-person contact and activity, but it’s a nice substitute, and a balm, when that isn’t possible. 

   Related to this, there has been an added, unexpected benefit.  In places such as China, where there have been shelter-in-place regimens, air pollution has gone way down, with the sky being far more clear.  With no one driving, the air is much cleaner.

   Like the sky clearing, these are signs of hope, signs of life going on in the face of death, signs that we are not giving up. Not only are we not giving up, we are, if not thrilling per se, making things better.  These are slivers and glints of light in the dark, green sprouts coming up from the black dirt.