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.
