A different - and difficult - shyness

   Last month, I attended a memorial for an old family friend, the mother of three children that I grew up with here in Claremont.  I had not seen the three in years, decades, probably since high school if not earlier, and I was really interested to see them, what they were like after all this time. 

   I arrived early, and soon enough, there they were.  We said hi to each other, asked each other how we were doing, said, “Fine.” And then – nothing.

   It wasn’t that there was nothing to say, nothing to talk about after all the years that had passed.  It wasn’t that there was so much to talk about that it was easier not to talk.  It wasn’t that it wasn’t an appropriate place for a real conversation. 

   It was that we were embarrassed.  There was embarrassment, mostly on my part.  I was embarrassed to speak, embarrassed by my impaired speech, and also embarrassed that I would make them feel embarrassed if or when they couldn’t understand my speech. I’m pretty sure that they were feeling embarrassed, unsure about if they would understand my speech. 

   So it was easier, a relief, not to say anything. 

   Now, it’s true that I had a mask on, which didn’t make talking or understanding me any easier.  But even if I didn’t have a mask on, the scene would have played out the same.  (Also, having my speech device wasn’t feasible that day.)

   I was thinking about this later that day.  There was nothing new about what happened.  This happens constantly, over and over, almost on a daily basis.  It happens when I’m out on my own, and someone who knows me or knows who I am (many people in Claremont know who I am) will come up and say hello.  It even happens at my Quaker meeting when someone outside the half dozen or so who understand my speech come over to chat after the close of worship. 

   After a few brief pleasantries, they will look at me, often with a sad, guilty smile, sometimes making an effort to carry on an all-but-one-way conversation and then walk off, sometimes with an excuse (needing to use the restroom, catch someone else to talk to, etc), sometimes not. 

   Something like this even more poignantly happened when groups of college students worked with me to put on one of my plays – a play that, in a cruel irony, deals with and shows, in part, the experience and results of having impaired speech. Other than rehearsing and performing the play, the students and I didn’t really converse and make connections.   

   Like I said, this happens over and over.  As I thought about it that day, I thought about how, yes, it’s sad and frustrating, and I thought about how there are certain things I can do to mitigate or ease the situation, like having my speech device or having an attendant or friend who understands my speech with me. 

   But I also thought about others with impaired speech, in particular a friend whose speech is just a bit easier to understand than mine but isn’t shy at all about talking to anyone – and almost with an attitude of “I dare you not to understand me!”

   In thinking about all this, I realized that, in addition to feeling sad and frustrated, I was angry.  This was something new. 

   I realized that I’m angry that I wasn’t encouraged as a child to speak, that I wasn’t encouraged to not be shy or embarrassed about my speech.  I’m also angry that the children I grew up with weren’t encouraged to try to understand or to be open to trying to understand my speech. 

   It was almost like I was a deaf child and only my immediate family and my teachers and a few others (baby-sitters, friends) could communicate with me. 

   I am not sure if there’s anyone I can be angry at or fairly be angry at.  I am pretty certain that my parents thought they were doing the right thing.  After all, it was the 1960’s, and there wasn’t much help, besides medically, for the disabled or for the parents of disabled children. It was years before the disabled being integrated and mainstreamed into society and schools with non-disabled students.  There was little if any advocacy and no talk of disability rights. 

   By the time I started attending school with non-disabled students in my teens – at a junior high, not exactly a friendly setting – I had bought into the notion that it was better, safer, more comfortable not to speak outside of a small group of people (attendants, friends). I have, of course, learned more to communicate with others, but the emphasis has been on doing so with the assistance of others or a variety of devices (from the lowest to very high tech). My non-attendant friends who understand my speech have taken time and effort to do so. 

   I don’t know if I can blame anyone, but I am, yes, angry that I ended up being embarrassed about my speech. It sure would have been nice if I had been more comfortable talking and perhaps with helping others be comfortable with my talking. It would have been nice if I had been able to more easily connect and perhaps bond with more of the interesting, cool people that I have encountered in my life. That includes those I grew up with who I’m now seeing again, more often under sad circumstances.

In my mind, I'm going to Santa Cruz

 (with apologies to James Taylor)

   I went downtown, and I was in Santa Cruz. 

   It was Saturday morning.  It had rained all day Friday and all night, and the sky was grey and drippy.  I went downtown – “the Village,” as Claremont calls it – to buy a ticket for a concert that night at the Folk Music Center, a well-known and beloved music store and hub of the local music (the grandson of its founders is Ben Harper, and there was a tribute to the recently deceased Claremont-based David Lindley in the front window).

   The sidewalks were stained a dark grey after an unusual amount of rain over the last few months, looking as if they would sprout at any time.  The people who were out, noticeably fewer than on a typical weekend, had on wool sweaters and beanies.  The guy at the store, who sold me the ticket and said he was glad to see me back, was similarly dressed. 

   I looked around the store, with its walls lined with guitars, banjos, violins, drums and with baskets of stickers, friendship bracelets, Guatemalan coin purses.  I looked down the street, with the small, independent shops, like the Eye of Budha and the Himalayan Collections. 

   And I was in Santa Cruz. 

   Many of the shops in the Village are more fru-fru and chic, almost Orange County, but enough, like the Folk Music Center, are funky and “homemade” enough to remind me of Santa Cruz on the coast an hour or two south of San Francisco.  It is one of my favorite places, where I spent a lot of time, including when I attended a year-end retreat for years in the nearby redwoods, another place I cherish, before my surgery.  When I was there in the days leading up to the new year, it would rain and rain, and I fondly remember going to downtown Santa Cruz, specifically Pacific Avenue with its small shops (where I bought some of my used and new overalls) and buskers (more so before an apparent gentrification), and the pier and the Sunset Cliffs walk on afternoons when it wasn’t too wet.  I did the same a number of times on summer trips.

   It has become, in recent years, more and more difficult, if not impossible, for me to travel, to make these trips. (Look at all the trips I made in just the year before my surgery, as I describe in two recent posts.) This is because of my increasing needs (equipment, attendants, etc.), and it is one of the hardest things I’ve had to face.  Traveling was always very important to me, something that I loved, and it devastates me, it breaks my heart, that I can’t really do it anymore, at least not like I used to. 

   I have had to shift my mindset in order to adjust to this new reality, so that it doesn’t make me crazy or drive me into complete despair.  I’ve realized that, strangely enough, the pandemic has helped me with this.  When we all had to stay at home or not go far, I learned how to be satisfied with what I have right here at home or in this immediate area. (I’ve wondered how I would have handled this if I had not had the surgery and become more disabled and was as active as I had been.)

   It has been getting harder now that things are picking up again, if not going back to normal, and many people are doing what they used to do, including traveling.  Although I’m thinking about planning a short trip up the coast, but not as far as the Bay Area or even Santa Cruz, later this year, I’m wrestling with whether I should just be satisfied, happy, content with what I have right here.  I’m wondering if I shouldn’t bother with traveling, which, as much as I love it and as much as I miss the redwoods and seeing family and friends and eating at my favorite restaurants in the Bay Area, has gotten all the harder and more exhausting. 

   I am learning to appreciate Claremont even more.  I am trying to enjoy the concerts, plays and lectures at the colleges even more.  I am trying harder to see that the Village is unique, with its little shops, including one that fills with people to see well-known folk musicians and bands, and an unusual number of artists and musicians who hang out there.  I am trying to see and to keep seeing that Claremont is not that unlike many places I love and miss and, what’s more, I am known and appreciated here (as with the guy at the Folk Music Center). 

   Also, day trips, such as the one I took recently to see two friends (not to mention the creepy huge statue of Marilyn Monroe, panties exposed) in Palm Springs, help.  It might also help to find a few restaurants here that I enjoy as much as my faves in the Bay Area, San Luis Obispo and San Diego.

Climate conflict

 

   The new year is always difficult for me.  I don’t like thinking about the next 12 months, like looking at a cold pool before diving into it.  I’m much better at one day at a time.  No, I don’t attend AA, but as a friend once said, I don’t do new year’s. 

   This new year was particularly difficult, coming with loads of anxiety.  Part of the anxiety had to do with the weather, as mundane and crazy as that sounds.  Despite the deluges in the first half of January, I worried that Winter would end any day and that the heat and dry weather would come all too soon.  For the last several years, New Year’s Day turned balmy, right in time for the Rose Parade, and it just got warmer and dryer after that.  Last year, there was no rain, no rain at all, in January, February and March – the rainy months here. 

   My sister was down from the Bay Area this week and drove home yesterday, a day earlier than she planned, because she didn’t want to drive back in the storm, another storm, that was coming.  This morning, a friend who dropped by in the rain after spending a few months up north commented on the “record-breaking weather California is having.”

   The change in the weather has been dramatic and leaves me with mixed feelings – hopefully not more anxiety! - as I explored, literally, in my latest Claremont Courier column, which came out a week ago. 

           A CHANGE IN THE CLIMATE AND IN PERSPECTIVE

   It was only a month or so ago, in January and even February, that I was complaining that there was never any snow below Baldy Village.  Or that there was barely any in the village. 

   At least not for a long time. 

   I was telling friends about the time I went up Baldy Road, and there was no snow, or barely any, until I went into one of the tunnels and came out, suddenly, into a white wonderland. I couldn’t remember if it happened 15 years ago or if I remembered 15 years ago that it had happened years earlier. 

   In any case, it was years since there was snow in the village or much below the Icehouse Canyon turn-off. I would often go up when it looked from here in town like the snow was low only to find no snow in the village, much less at the tunnels.  I would feel like Charlie Brown fooled again by Lucy with the football. (At least it was nice up there. Going up there is never a waste of time.)

   It was something like 10 years ago that a friend and I had breakfast at the Baldy Lodge, enjoying the freshly made cinnamon buns, when there was snow melting outside.  It has been at least that long since there was a thin layer of snow covering the field at the school at the entrance of the Village. 

   What a difference a storm makes.

   Or at least the unusual, record-breaking, cold storm that ushered in the last weekend of February. I had been reading about it and hearing friends talk about it snowing in Upland and Montclair, but then I saw glimpses of the hills between the low covered in white – not just for the morning but for two, three, four days.  Then, I knew it wasn’t just hype. 

   On that Monday morning – it was not only not crowded but also turned out to be between storms if not between raindrops – I ventured up Baldy Road to Baldy Village, wanting to see what I used to see.

   Well, I got what I wanted – and then some.  And then some. 

   There were patches of snow soon after the incline began. By the time we were at the Shin Road turn-off, quite a bit below the tunnels,          the snow was all-present.  In fact, traffic was being stopped to let a snow plow pass.  So much for just wishing there was snow at the tunnels like I remembered.  This was serious.

   Very serious, as was evident when the village came into view.  The field wasn’t covered with a pretty layer of white, as I pictured in my head from years past.  The field was gone, lost, buried in more than a few inches of snow.  I thought of having heard that the school was closed for snow days – snow days near Claremont! – and knew it wasn’t all fun and games. 

   This was all the more clear further into the village.  Snow was piled in all-too-perfect formation on top of cars, many of which were trapped, so to speak, with piles snow blocking their way out of driveways.  I wondered if these people were stuck in their houses partially hidden by snow. 

   For all my fond memories of snow in Baldy Village and even at the tunnel, I had never seen snow quite like this, at least not up there. Maybe the snow, if there was this much, had always been shoveled or was melting away when I went up. This wasn’t exactly the stuff of fond memories. This was, again, serious, even alarming.  I understood why a couple I know who live in Baldy Village were “camping out” in Claremont. 

   I had seen enough, and rain was starting to fall again upon arriving back in Claremont. I wanted some change in the weather but perhaps not this much change. Indeed, “climate change” is a better term than “global warming.” At least it stops the deniers in their tracks. 

   All I wanted was a bit of rain now and then, for the heat and dry weather to hold off for two or three months, until April or maybe even May. This wasn’t quite what I had in mind.  

The year that changed everything - part 2

 

   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 28^th (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.