This is the second
of two parts. I encourage you to read
both in one sitting or in relatively quick succession to get the full impact. (If you read the first part when it was
published, I encourage you to review it before read this part.)
I didn’t realize
how much happened in this time period until the last year or two. As I’ve
written a few times before, I’ve been thinking a lot, for better or worse, about
my life before my spinal surgery six years ago this month, and it occurs to me
that an astonishing number of dramatic, meaningful events happened in the year
before the surgery, not unlike the climax of a novel or, more appropriately in
this case, the first or, again more appropriately here, second or third act of
a drama.
In some ways, it
has been difficult to write this, as it has brought up many emotions, but I
sensed it would be good to write it out, let it go, unburden myself, so to
speak, so that it would no longer weigh me down. At least not so much.
The year before my
spinal surgery, which left me far more disabled, which changed everything in my
life, was barely halfway over, and there were plenty more dramatic and
significant events yet to come.
When I made it home
without a van from the trip north in June, I was stuck. Literally. I had no van. Not only that, but we didn’t know if I’d be
getting my van back or if I would be getting a new van. And we didn’t know for a few weeks.
It seemed that the
auto mechanic and the insurance people kept going back and forth about whether
or not my van was totaled – my dad kept giving me different reports – and I was
in limbo in the meantime. Fortunately, I
didn’t have much going on – no appointments and whatnot at the time – but I had
to tell my attendant what to buy at the market, couldn’t escape to the beach on
the weekend. I do have vague memories of
going to an event or two in L.A in an attendant’s car, taking my manual
wheelchair, but I’m not certain about what and when the occasions were. My dad
was also in limbo, waiting to find out if he’d be getting my van back or would
have to get me a new van, not to mention how I would get either down here in
Claremont.
Finally, both to my
surprise and my relief, it was determined that my van was totaled. Things were
able to move forward then, once my dad received a payment from the insurance
company. Within another week or so, he
located a wheelchair-accessible van – a used one – at a dealership up in Santa
Rosa, and it was delivered in the next week.
(At the time, I was lead to believe that it was the only such van he
could find and that it was lucky that he found it, but I have since realized
that I was somewhat naïve to believe this and that it was really a matter of
the price being right.)
By the time the van
showed up at my house, it was almost mid-July, and I was tremendously relieved
– not only because I finally had wheels but also, and more importantly, because
it meant I was able to attend the California WorldFest, a weekend music
festival featuring bands from all over the world which I had attended for about
five years, in Grass Valley.
Barely. As I recall, I got the
van two or three days before I had to leave.
On the way up, I
stayed in Berkeley with my friend Leslie, who I had encountered a month earlier
after 30 years, in her hard-to-get, rent-subsidized, wheelchair-accessible
apartment. While there, I learned that her attendants, including Ingrid, who
had been so helpful when we met in June, were provided by Easy Does It, a
remarkable service available to Berkeley’s disabled residents. I was also quite
taken with Leslie’s cat, Goofy, who surprised me by not bothering me at night
despite my sleeping next to the cat perch.
And to my amusement, Ingrid offered us packaged cookies, calling them
“crap” (I didn’t partake).
I also stopped by
my parents. This time, my mother was up
in her wheelchair and doing relatively well.
She and my father and I went and sat outside and had a nice
conversation. I don’t remember what was
said, but my mom was at peace and pretty much said she would be alright and I
would be alright.
As usual, I had a
fantastic time at the festival, camping for three nights and spending the days
enjoying an incredible smorgasbord of bands from all over the world on the
grassy, woodsy Nevada County Fairgrounds.
I’m pretty sure Carl, my Quaker friend who is similarly disabled and who
I’d met a couple years earlier, came on the last day, and we – Virsil was with
me on this trip, as I recall – went to his place at the Sierra Friends
Center/Woolman School, where he worked and lived, outside Nevada City that
night. I don’t remember how long we stayed there, but, as usual, it was very
nice, and we went home via Lake Tahoe and the back-in-time drive down Highway
395 with the usual overnight stay in Bishop.
A nifty way to break in the new van, which I was very glad to have but
didn’t like as much because, for one thing, it wasn’t as convenient for me to sleep in
with its folding ramp.
Being back home was
a chance for a breather, but not for long.
A week or two later, on a Sunday morning, someone called a left a
message when I was getting up. It was
July 24. I listened to the message once I was up, and it was my dad telling me
to read the e-mail he had sent. I
thought this was odd, especially as he sounded so quiet. I read the e-mail right then.
My mom had
died. In the e-mail, my dad wrote about
how my mom had been doing okay, relatively stable and comfortable, and had
taken a sudden turn for the worse. He
ended the e-mail saying my mom had always loved me very much. David was working, and I showed him the
e-mail, and he hugged me as I cried a bit.
I went to meeting,
but I don’t remember if I said anything about what had happened. I went to a
birthday party that afternoon where some of my Quaker friends were. I don’t know if I broke the news there, but I
think we talked about it. We were out on
the patio, once they realized I was outside and the house was
inaccessible.
I remember over the
next few weeks, I was very emotional. I
would just start crying. I was very thankful that I had seen my mom, calm and
at peace, a few weeks earlier, and I imagined her telling my dad to hurry and get
me a van so that I could come see her.
Also during this
time, my relationship with Carl was evolving in surprising and exciting ways
that made me very happy. I found out that the memorial for my mom was scheduled
for mid-August, and Carl and I planned to spend time together before and after
I was going to be in the Bay Area for the memorial.
The plan was that I
would go with Virsil first to see Carl at Sierra Friends Center for a couple
days, then to the Bay Area for a couple days, during which I would attend the
memorial, and then finally to meet with Carl at Quaker Center in Ben Lomond in
the Santa Cruz redwoods, a place I cherished from going there for years for
year-end retreats. It was going to be a
fun trip with some serious business in the middle. At least, that’s how I planned it.
At the Friends
Center, it became evident that Carl’s and my relationship was continuing to
evolve – rapidly, in surprising and confusing ways. I went to the Bay Area all the more rattled
and was glad to be staying with Leslie.
On the morning of
my mom’s memorial, I hadn’t urinated since the previous day and still couldn’t.
I had had this problem before, and it became clear that I had to be
catheterized – before the memorial at noon. I had been catheterized – a tube
inserted into the penis – only a few times before, and it was still a very
painful and relatively traumatic experience.
(After the spinal surgery, when I had to have an internal catheter all
the time and it had to be changed at least once a month, the process was
routine and got to the point where I barely felt it.)
While I was
nervous, to say the least, about having this procedure done and about getting
to the memorial on time – not to mention still thinking about what was going on
with Carl and me – Virsil and I set out on what ended up being a frantic
search. We went to two places that
wouldn’t do the catheterization before we ended up at an E.R that would.
Miraculously, they took me rather quickly and then did the procedure and
discharged me in under an hour, as I recall.
Virsil and I were amazed that we literally pulled up to the memorial
right in time and that I was in relatively good shape.
Actually, it was
the second half of the memorial. It was
a lunch, held at a dance studio owned by my sister-in-law. The first half had been a ceremony on a boat
out on the bay, during which my mother’s ashes were scattered and which was
inaccessible to me (and which I couldn’t have gone to anyway). This bothered me
a bit, but the lunch was quite nice, with many relatives and friends I hadn’t
seen in a long time, including one who was now a lesbian and was pleased that I
too had come out. After everyone had
gotten their food, people stood and shared memories of my mom – sort of like a
Quaker memorial meeting – and my sister read a piece that I had written. All in
all, it turned out to be a pleasant and also emotional and, yes, traumatic day.
I remember going to Telegraph Avenue to buy something – I forget what – before
happily returning to Leslie’s apartment.
I think it was the
next day when Virsil and I headed down to the San Jose train station to pick up
Carl and went on to spend a few hours in Santa Cruz before going on to the
Quaker Center. Things didn’t go as
planned, as Carl’s and my relationship was again quickly evolving in dramatic
and difficult ways. Even so, I made the
best of being in this beautiful spot amid the redwood trees that was so
familiar and so cherished, and, on the morning before Virsil and I left to
return to Claremont (did we stay overnight in San Luis Obispo?), I made a point
of spending some time talking to Carl. I
was very happy that we came to a resolution, as emotional and difficult as it
was.
That Fall was
relatively quiet – thank God! – although not without some significant
happenings. For one thing, I was
conflicted about a local men’s group that I was involved in. I had been quite pleased when I discovered
and joined it – part of the Mankind Project – a year earlier, but it was more
than the simple rap group that I was looking for. (It wasn’t really like the
California Men’s Gathering, which I had been involved in for years, but I was
looking for something more local, and I could get to these meetings in my
chair.) Plus, I felt pressured to attend
a weekend initiation, which cost $700 ($1400 with my attendant) and which they
wouldn’t say anything about. While I was
glad that there was group where men could look at their lives, express
themselves authentically and recognize how they might improve themselves, I was
uncomfortable with, among other things, cult-like aspects and the cost of
participation. The trouble was that I wanted to stop going, but I didn’t want
the guys to think I was giving up, couldn’t hack it – perhaps because I’m
disabled. So, I kept going, although no longer every week, even though I was
stressed and unhappy.
In late October, at
Carl’s invitation, I went to the Fall quarterly meeting, a Quaker regional
gathering, in Northern California at the Sierra Friends Center. It was a bit odd for me to be going – I
usually attend the one in Southern California – but it was a way to see
Carl. The weekend turned out to be weird
and kind of difficult. It poured the whole
time, making the site a big mudhole hard to navigate in a wheelchair, and,
although I stayed at Carl’s house, I hardly saw him, since he was very busy
with logistics for the meeting, which was part of his job at the center. I wondered at the time if this was his way of
gently setting new boundaries in our friendship.
There was also the stressful
presidential campaign, with Donald Trump (really?) all but stalking Hilary
Clinton, and the surreal, stomach-churning election. After watching the exhausting
election night coverage, perhaps foolishly, I was devastated by the result,
leaving me in a daze for days. This was
even worse – far worse! – than when Reagan or George W. Bush won. If anything, Carl, who was a straight-up
Berner, seemed more upset than I was, barely speaking. The on-going news about Trump’s cabinet and
advisor picks – Steve Bannon! – didn’t help.
In late December,
after Christmas, I went north again – again! – to see my family, this time with
David. Once again, we stayed with Leslie, and, since we arrived during Hanukah,
I took her some chocolates imprinted with dreidels, and we watched as Leslie’s
attendant lit the menorah and they recited a Hebrew prayer. A highlight of the
trip, and really a highlight of my life, was spending a day with Carl, who was
staying at a friend’s house in Berkeley.
After having lunch at Nation’s, where, to David’s and my amazement and
amusement, Carl promptly ordered another burger after finishing one, we spent
some time in the all-but-abandoned China Camp park, and then I took Carl to
meet my father. David and I sat in awe as Carl, who had studied computer
science at Haverford College, and my dad, who had taught math at Harvey Mudd
College, talk higher algebra, which neither of us understood at all. I felt that, with this visit, with my dad
liking a guy who he knew I liked, he saw and appreciated me, who I was, more
than perhaps he ever had. The day ended
with Carl, David and I having dinner at Gaumenkitzel, a German restaurant I
like in Berkeley, and then helping Carl get a burrito, at a tiny, surprisingly
good Mexican restaurant (more like a stand) for the next day before dropping him
off.
It was a month and
a half later when, six years ago this month, in February, 2017, I got sick and
ended up having life-saving emergency spinal surgery at nearly midnight on the
28th (as I wrote about in two previous posts - October 1 and 6, 2020).
In the
months after the surgery, while I was in a “skilled nursing facility” – a
nursing home (what happened after the surgery should be the subject of another
post or two) – Carl moved back east (he would later return to California for a
while). And, out of the blue, Leslie died in Aprilat age 55, a year or so
younger than I was. I was stunned and overwhelmed,
to say the very least, by how much and how fast everything was changing – I
cried a lot - and my dream of Carl, Leslie and I getting a nice, big house in
Berkeley – ha! – and pooling our attendant funds and hiring people to be there
24/7 was just that – a dream. (I have come to realize that seeing Leslie during this year, with her increased disability, was like seeing myself after the surgery.) I also thought that it was all-too-appropriate
that I fell ill one month after Donald Trump was inaugurated as president, and
I was grateful that my mom wasn’t around to see both.