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A new life at Friday Nights Live

by John Pixley

It looked like something from 30 years ago. Except back then, as one friend pointed out when he stopped by, “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—who were grooving and gyrating, waving their arms and moving their legs every which way including, and 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 as 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 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; it’s 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 is only in the last four months or so that I have 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 ER, 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 while I sleep. In addition, even as I lost much sensation, I now had a lot of neuropathic pain.

After I had recovered enough from the surgery in the hospital, there was also a four-month stay in a “skilled nursing facility” or a “rehab facility.” In other words, a nursing home. 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—it 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 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.

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 to not feel so “out of it.”

Last year, I began 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’d 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 to not 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, there are things I wonder if I’ll ever get used to, like not being able to pick things up, to scratch an itch, to turn things on and off and to 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 to me, including the COURIER, 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 Nights 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.

 

[Editor’s note: Welcome back, John. We truly missed you. —KD]