What the Hell happened?

 

   Shortly after I got my new wheelchair about two years ago when I was working with physical and occupational therapists and a wheelchair technician, two clickers were Velcroed onto the gear box. Given the very limited use I have of my left arm and thumb – I have no use at all of my right arm and my legs – since my spinal surgery three and a half years ago, one is to enable me to more easily turn my chair on and off, and the other is to make it easier for me to change the speed and access the tilt function. They work pretty well. 

   Except when they don’t. 

   It’s not that the clickers don’t work.  They work fine.  It’s my arm that doesn’t work. 

   Not all the time, though.  There are times when my arm works okay, and I can use the clickers just fine.  Easy peasy.  There are even times when I can even press the buttons on the gear box. 

   But there are times – lots of times – when, for some reason (being too cold, too tired, not sitting right…?), I can’t get my arm down and can’t use the clickers which were supposed to enable me, which were supposed to make things easier for me.  (Hitting the clickers without hitting the joystick is also an issue.) I end up right back at being stuck, not being able to do anything and needing my attendant to do it.

   This is most frustrating, to say the very least, when, before the surgery, I had no problem pressing the buttons on the gear box and operating my wheelchair.    

   And so many other things.  Before my surgery, I was able to do them with no or little problem.  No special clickers needed.  (Although I did have some special equipment, such as my speech device and additional programs and attachments on my computer that made things easier for me.)

   I have been thinking a lot about this lately, about how my life is so different now, about how I used to be able to do so many things.  I notice how weird it is when I try to tell my attendants now what my life was like, what I was able to do, about all that I did, like go on camping trips, until February, 2017. It’s like they don’t believe me, like they roll their eyes at me and say “sure, sure.” At least this is how I feel when I try to tell them.  (In a weird way, this is a blessing, in that my attendants accept me as I am and aren’t sad and/or angry about all that they have to do for me.)

   But, as it is occurring to me, it’s also me who can’t believe what happened. 

   Yes, I’m frustrated, extremely frustrated.  And I’m sad, terribly sad. That I can’t press the buttons on my gear box and operate my wheelchair as I used to.  That I can’t turn pages or swipe on a tablet. That I can’t wipe my nose or flip on the light switch, open the door or take a cookie from the tin and eat it myself. And so many other tiny and not so tiny things that I could do before. 

   What I experience even more, I realize, is disbelief, that I can’t or don’t believe what has happened to me – like, “What the Hell happened?” As I recently explained to a friend, I don’t wake up in the morning thinking this.  No, it will hit me at random times, like when I have to ask an attendant to feed me a piece of candy, when my attendant positions me in bed like a rag doll or turns me from side to side at night, when my attendant has to assist me in having a bowel movement when I used to be able to sit on the toilet (after my attendant helped me onto the toilet – I was able to stand with my attendant helping with balance) and go on my own. I could go on and on with examples. 

   What the Hell happened, indeed! 

   I don’t know what it means that I’m experiencing this still three years after the fact.  Where does this put me on the stages of grief? 

Am I stuck at denial?  Friends assure me I’m not.  And I cried plenty during the first year after surgery (although, perhaps oddly, not for a while now).         

   As I’ve told friends, I wish I had been in a car crash or some other accident.  Then I would understand better, it would make more sense, why I ended up more disabled like this. I could get my head around that more than osteomyelitis, some weird infection that I’d never heard of, that got into my spine apparently after starting off as a urinary tract infection after a botched catheter insertion and that almost killed me.  Talk about hard to understand.  Or, if I had to have an infection, why couldn’t I have had cancer or something that I had heard of. 

   It’s kind of like this pandemic – seemingly a small thing that came at us almost out of the blue, or, more accurately, wasn’t prepared for or heeded properly, and now we are or should be going around wearing masks like in some sci-fi or horror movie, kids are staying home and having school online and millions are out of work, not to mention all those getting sick or dying, with perhaps, given our divisiveness over everything including masks and, yes, vaccines, no real end in sight. 

    What the Hell happened, indeed!

Going places while not going places on Zoom

 

   I’m back from Summer break. 

   And what a summer it has been.  The coronavirus continued to rage on – it didn’t just go away in the warm weather as President Trump predicted and despite his ignoring it in a sorry attempt to better his chances of getting reelected.  There has been lots of civil unrest, mainly peaceful protest over police brutality and racial injustice, calls for reforming and defunding, if not abolishing, the police.  Again, Trump has found a way to use this to save his desperate campaign, saying the unrest will only spread “to a neighborhood near you” if Joe Biden wins in November and more or less stoking whatever violence there has been by sending out the National Guard. Trump is also sowing doubts about mail-in ballots, needed to ease the spread of COVID-19, and even the beloved U.S Post Office in a pathetic effort to impact - sabotage? – the election.  Here in California, we’ve also had terrific heat waves – it was 114 degrees here in Claremont this weekend – and massive wildfires. 

   But, perhaps more than all this and more, what has stood out for me about this summer is Zoom.  At least among my circle of friends and acquaintances, Zoom has turned out to be a lifeline, allowing us to carry on without being total hermits.  It has also  opened up surprising new possibilities, new worlds.  All this, despite my nagging reservations about it. I wrote about this in the column below, which appeared in Friday’s Claremont Courier. 

   As for being back from summer break, that’s my intent, at least.    

 

     ZOOMING IN AND OUT OF SUMMER, 2020, FOR WORSE AND BETTER

   I have a confession. 

   I don’t like Zoom.

   A friend once said that he doesn’t “do” New Year’s.  I don’t do New Year’s either.  I don’t like staying up until after midnight and partying and getting hammered.  I don’t like thinking about the next twelve months and making resolutions and all that.  It’s all too scary. 

   It’s not like I don’t do Zoom.  I do Zoom.  I just don’t like it. 

   I find Zoom exhausting.  And frustrating.  And sad.  The people are there – yet not there.  I can hear and, yes, see them – and it’s not like T.V, because they can also hear and, yes, see me – but I can’t reach out and touch them. There is no human contact.  We can’t shake hands, can’t hug.  We are each in a box, a bubble, a cell.  It’s like visiting a prisoner and having to speak through phones with thick glass separating us. 

   Like I said, it’s exhausting – and frustrating and sad. It almost makes me feel more isolated, more lonely, like I really am in prison, locked up.  Almost.   

   I am okay on Zoom for an hour or two.  I can hang with that.  After that, I start to lose it.  I zoom out. 

   I don’t know how people who work at home on Zoom do it.  I would think, I would hope, they aren’t on Zoom all day.  They probably have meetings interspersed with desk work or whatnot throughout the day. Right?  I hope. 

   The same goes for students.  Doing classes all day online must be a challenge.  But they probably have classes at different times during the day or different times during the week, instead of one after another all day.  Or, as public school students in Claremont have recently started at least for now, they’re on from 9 to noon – not really all day. Also, they’re more used to looking at screens. 

   Then again, despite my frustrations with Zoom, despite all of its drawbacks, it is a lot better than the alternative. 

   Which is nothing. 

   In this time of social distancing, when we aren’t supposed to get together, aren’t supposed to have meetings, aren’t supposed to congregate be in crowds or audiences, Zoom has been something of a miracle, a godsend.  It is downright amazing and wonderful that we have this technology and are able to get together in this way. 

   Just imagine if we couldn’t.  Just imagine if this pandemic had happened twenty years ago.  We wouldn’t have been able to have meetings, have classes, have get-togethers online. 

   Now that would really be sad and frustrating.  It would be more than that.  It would be a disaster, even more of a calamity than what we’re experiencing. 

   Indeed, given all the sickness and death, all the unemployment and hardship on small business, all the disruption in school and so many aspects of life caused by this pandemic, Zoom is a tiny thing to get frustrated and sad about.  A stupid thing to be bummed out over. 

   I have been amazed, yes, at what I’ve been able to do on Zoom.  I have been able to stay at home and see a doctor. I have been able to take care of business and get together with friends (also on Google Hangouts). I have been able to attend Quaker meetings. 

   But it turns out this is just the beginning.  As I recently remarked to a friend, more and more events are happening on Zoom, with three that I knew of, in addition to morning worship, on a recent Sunday. 

   Earlier this summer, I was able to attend an annual five-day gathering of Quakers from California, Hawaii Nevada and Mexico.  Although I really missed going to Walker Creek Ranch in the serene, gorgeous rolling hills of rural Marin County, where we’ve been meeting in recent years, it was a thrill and a joy to see all those familiar, beloved faces in those Brady Bunch grids, those Hollywood Square, even with the fumbling with muting and unmuting.  And, yes, this also made me sad, but it was certainly easier and cheaper than traveling up north, all the more so since I’ve been more disabled after having  spinal surgery three years ago. I could have attended sessions from early morning (yoga) to 10 at night – there were even meals – but, again, I can only take so much Zooming and so limited my attendance. 

   Just recently, I attended a concert with Annie Patterson and Peter Blood, who compiled and edited the great songbook, Rise Up Singing. It was actually billed as a sing-along, but we were all muted, so that we wouldn’t be a complete cacophony of voices.

   Also this summer, I saw two play readings on Zoom, put on by the Open Fist Theater Company in Los Angeles.  One was Shakespeare’s A Midsummer Night’s Dream, and the other was a new comedy written by a company member called That’s F***ing Hot. Both were lots of fun, and it was amazing to see how well the actors worked not together but each in their own space.  (It was also fun to see a cat walking by in the background as Hermia lamented. I can write a whole column on what we see and don’t see in the background on Zoom.) Also, not having to drive to L.A was nice.

   I’m hoping that the colleges get in fully on the act and, in addition to classes, put some presentations – some talks, perhaps a few concerts, even a play – on Zoom.    

   So, yes, there are lots of nice things about Zoom, as irritating and tiring as it can be.  Another bonus with Zoom is that it forces us to focus.  It forces us to listen, to really listen to what is being said.  It’s like hearing a story on the radio and having to use memory and imagination to sense, to picture what’s being said. 

   This is most evident – and effective – in a series of conversations presented on Zoom by the Local Spiritual Assembly of the Bahai community. Entitled Claremont Speaks Black, this is a forum that allows Black residents of Claremont to speak freely and frankly on being Black in Claremont - something that needs to be heard in these days of civil unrest over racial injustice, including police brutality.

   This is good, hard work being done by the Bahais.  There have been two presentations so far.  One was with a Pomona College administrator and Claremont Police Commissioner, and the other was with a professor of Pitzer College.  They spoke of having to “dress up” when going out, even for a walk around the block, of feeling “at home” at the colleges but not in Claremont where Black men they know are stopped by the police for no reason, of everyone turning to look at them when they enter a restaurant or store in the Village. 

   Because we were there but not present, because we were muted and, for the second presentation, not seen, they were free to be open and say all this and more.  And we who were attending had to listen, really listen, use our empathy and our imagination, and were able to get a real sense, more of an understanding, of their experience of being in Claremont. 

   Just the kind of understanding, the understanding, at last, that Black lives matter, that we need at this time. 

   Like I said, this is good work.  The next session, on September 13, will feature Josue Barnes, who co-founded Claremont Change.  (E-mail Claremontlsa@gmail.com for more information and the link.  It’s sure to be worthwhile – all the more thanks to Zoom.