Going back to a way forward

   For almost the last two years, since not too long after I had spinal surgery which left me considerably more disabled and after I last wrote a column for the Claremont Courier, various people have encouraged me to write another or “one last” column as an explanation or wrap-up for my absence after writing a column for some 25 years.  Many people have said they miss my column and that they hope or wish I write again. 

   I resisted these entreaties.  I didn’t want to write about myself; that never was what my column was about.  I didn’t have the energy or the time to write a column, and I certainly couldn’t or didn’t want to go back to writing a every-other-weekly column. Adjusting to my new disability was taking all my energy and time, and writing the column had gotten to be stressful enough. 

   Then, late last month, after a particularly enjoyable evening, I found myself writing a piece for the Courier.  I was suddenly excited to write such a piece, a piece about adjusting to my life with my new disability in the last two years.  Perhaps most importantly, I had a way to write an article about my life with it also being about the community, about Claremont, and not just about myself.  I was able to incorporate a story about my life into a story about Claremont. 

   I had also been thinking that there was too much to write about, but I was also able to write about the last two years, to give a pretty good summary, a pretty good update, without getting mired in all the details. 

   There is plenty I did not write about.  I didn’t write about having difficulty swallowing liquids after the surgery and needing a g-tube inserted into my stomach for liquids and medications and about how I miss drinking, especially fresh-squeezed orange juice every morning.  I didn’t write about having a urinary catheter all the time and how this makes me prone to urinary tract infections and needing antibiotics, leading to other problems.  I didn’t write about needing to have assistance in moving my bowels, more or less literally. I didn’t write about the time when, while I was in the nursing home in the months after the surgery, I fell to the floor from a hoyer lift. 

   The piece came out in Friday’s edition of the Courier, days after I submitted it.  I don’t know what will happen next.  I’m thinking I may write another piece or two this year.  Maybe.  I suspect there are many who would like me to start writing regularly again, and I feel bad about letting them down, but I don’t want to or feel able to make the commitment.  Or I’m afraid to do so, afraid that I’ll have to stay in the hospital or something and not be able to write.  This I where I am – at least for now. 

   As I say in the piece – see below – I have to live, I have to write, etc., as I am now, not as I was. 

                A NEW LIFE AT FRIDAY NIGHTS LIVE

   It looked like something from 30 years ago. 

   Except that, as one friend pointed out when he stopped by, back then, “everyone was much younger, and it would have reeked of weed.” And except for all the children running around. 

   But there was plenty of tie-dye to be seen.  And much of it was on guys – grown men – grooving and gyrating, waving their arms and moving their legs every which way including, especially, loose.  There were plenty of women joining in, with flowing, brightly colored skirts and dresses. 

   The dancers on the lawn seemed to be in their own little world, lost in the music and in each other.  It was hard not to get caught up in the music, not to move to the endless rollicking jams, as the Pride of Cucamonga, a Grateful Dead tribute band,  played in Shelton Park on a recent Friday evening – part of the Friday Nights Live series in the Village. 

   Another friend, who was younger by far and who came to give me a ride home, said that he never listened to the Dead. He laughed and said he doesn’t consider himself to be a “dirty hippie.”

   That’s alright.  If we were all dirty hippies there on that warm Friday evening, so be it. 

   Shelton Park, with its inviting circle of lawn and its attractive performance stage framed by a canopy of willow and other trees, is the nicest place in the Village, if not all of Claremont, for an outdoor concert. And the swirling, folksy, psychedelic rock of the Grateful Dead made for a nice, simultaneously relaxing and invigorating soundtrack, all the more so with a pleasant patch of grass to dance and run around on, on a summer evening. 

   I had gone up to the park on my own in my wheelchair. This was very much a significant part of the evening, still kind of a big deal. As many here in town know, my getting around in my wheelchair was no big deal at all for many years.  It was only in the last four months or so that I had been going out in my chair alone after two years of not being able to do so. 

   Two years ago, in February, 2017 – the last time I wrote an “Observer” column for these pages - was when I fell ill and ended up with paralyzing neck pain.  After two weeks of agony and three visits to the E.R, I was diagnosed with osteomyelitis, a rare bacterial infection in the bones.  Apparently, a urinary tract infection, which I didn’t know I had at the time, had essentially traveled into my spine, and I was taken into emergency spinal surgery late on the last night of the month. 

   The surgery saved my life, as I later learned, but it also changed my life – drastically.  I was left paralyzed from the chest down and, as a result, needing far more assistance.  I now needed care 24/7, including help with pretty much every daily living activity and also with having to be turned a few times at night.  In addition, even as I lost much sensation, I now had a lot of neuropathic pain. 

   There was also a four-month stay in a “skilled nursing facility” or a “rehab facility” – in other words, a nursing home – after I had recovered enough from the surgery in the hospital.  I had always dreaded being in such a place, swearing I never would, but, as I learned last year when I spent a few days in another, the Claremont Care Center, oddly enough in Pomona, wasn’t nearly as bad as it could have been.  I was and am grateful for this and for the kind staff members as I found myself dealing with a new level of disability. 

   It was great to go home in June, but it wasn’t easy, with a steep learning curve and lots of adjustments for me and my now around-the-clock attendants.  For months, I spent most of my time in a special hospital bed set up in my living room, with occasional outings – the Monday night concerts in Memorial Park were a highlight - in a tilting manual wheelchair and with several pillows propping me up.  I also had nurses coming to the house. 

   Late that summer or early that fall, I asked a physical therapist who was visiting if I could try getting into my power wheelchair. I was soon, again with pillows propping me up, driving myself slowly from one room to another.  I began going out more but always with someone and usually in my van, and I still had to spend much of my time in bed.  And there were times when I grieved as I rode in my van along streets where I always used to drive my wheelchair. 

   Months and months went by, with my doing more and more – going to movies, concerts at the colleges, plays at Ophelia’s Jump and other local venues as well as the usual errands and such - and also with setbacks and hospital stays and not being able to go on planned trips. I also stopped taking many medications, opting to deal with more pain and not feel so out of it. Last year, I began having therapy at Casa Colina, and, early this year, I got a new power wheelchair that was practically custom-made for me. And then, there was one day this Spring, when I decided I was done with convalescing and began staying up in my chair all day.  Yes, it hurt, but I realized that I was also in pain when I was lying down, and I rather be up doing things. I also began going out on my own in my chair, although not as far as I used to. Plus, I had the bed moved into the bedroom.    

   I continue to make adjustments, and I’m finding new ways of doing things.  Or, more accurately I’ve come to realize, I’m learning not to try to do things as I used to do them.  I’m seeing more and more that I have a new life, probably much in the same way someone does when getting older, when retiring. One friend has said that it has been like I got old fast. 

   Although the learning curve isn’t so steep these days, I there are things that I wonder if I’ll ever adjust or get used to, like not being able to pick things up, scratch an itch, turn things on and off and turn pages.  As one who used to read whenever I could, I find it extremely frustrating that I can’t turn pages or swipe a tablet.  I have friends read some things, including the COURIER, to me, and I now enjoy audio books, but I’ve found that listening isn’t the same as reading and is harder, especially when I’m sleepy.  And, yes, I can always read online, but I’ve never really liked doing so. 
   I have recently been venturing further on my own, including to Memorial Park and the parade on July 4 (and I recently went to Northern California for nine days – by far my longest trip in the last two years and a major feat), but the Village and Pomona College are about as far as I go – for now.  So, Friday Night Live made for an ideal outing, and a Grateful Dead tribute band was perfect for a summer evening for me.  Clearly, some others thought so too, and I had more than reason enough to celebrate and join them in swirling on the lawn, at least in spirit.