Getting unstuck (?)

 

   The other night, I was watching a documentary on Netflix called Radical Wolfe about Tom Wolfe, the famed and somewhat controversial author of such modern classics as This Electric Kool-Aid Acid Test, The Right Stuff and The Bonfire of the Vanities.  I was struck when, during one of the many television interview clips shown, Wolfe, in talking about The Right Stuff which took him most of the 70’s to write, described writing as “agony.”

   This made me feel better.  It helped to hear this.  It helped to hear Tom Wolfe, this great, famous writer who I have always loved, saying that writing was agony for him.  I don’t know if I would say that writing is agony, but, as much as I love it as Wolfe undoubtedly did, it is often not easy, to say the least. (Another quote I like – I don’t know the source – is “I like having written.”)    

   I don’t say this to elicit pity or as an excuse, considering that I haven’t posted here in months.  I’m just saying.  It’s a fact, an explanation. 

   The fact is that I haven’t been writing much lately, because I’ve been preoccupied.  It’s like my mind has been taken over, hijacked, by issues I’m dealing with, leaving no room to develop ideas to write about.  I don’t like it that this happens.  Like I said, it’s just a fact, it just is. 

   One of these issues literally took my time.  For many months, I had a pressure sore on my butt and had to lie down for at least part of the day.  This robbed me of time to do things – like write. (I did get out a column for the Claremont Courier and a few short items for my Quaker meeting in spurts when I was up and not going out.) Last week, the doctor told me that the sore is gone.  Hooray!  But now I’m wary of getting another sore and wondering if and how much I should lie down sometimes.  I’ve been lying down for a couple hours on most afternoons, but I wonder – and worry – about wasting time – and not writing. 

   Another thing very much on my mind is hiring at least two attendants.  I don’t like hiring anyway – getting strangers to take care of me – and the process this time has taken months, with the added stress that I need more than one attendant.  It has been hard to attract people, to get them to come for an interview, and a couple good prospects have backed out, despite the remarkably good pay I’m now able to offer.  The background checks, required for my funding and which can sometimes takes weeks and sometimes months, don’t help.  I also feel bad for my remaining attendants, who have taken on many extra hours and some overtime.  (One has been working practically every night for at least a month while starting a very difficult course of study.  Also, I’ve been assured that I have enough funding to cover the overtime, but still…)

   I’m also anxious and excited about this summer when I’ll be away not once but twice.  In July, for the first time in five years, I’m going to an annual five-day gathering of West-coast Quakers.  The meeting is being held at Whittier College, 40 minutes away, close enough to have my attendants do their shifts there.  The other trip is to Santa Barbara, about 2 hours away, in late August.  This should be easy and relaxing, but it’s a consolation of sorts, after backing off from a trip to the Bay Area, which proved to be too difficult now and which I’m still mourning, yes, mourning (I still need to cancel the airbnb). I’m looking forward to both times away, but there’s a lot to get ready, including getting my attendants lined up.  I wish traveling wasn’t so much harder than before my spinal surgery or even a few years ago – another thing I’ve been ruminating on.

   I rather be thinking about things to write, and writing them, than obsessing about these concerns, as mundane or profound as they are.  Like I said, this is not an excuse – and I did get this whole post out of just saying! – and I can only hope to be back here more often.  I will try.  That’s all I can say.

 

   Actually, I can add a bit more – my latest Claremont Courier column, which I managed to write when I was up and not going out. As you’ll see, it discusses the frustration of not being able to do what one was able to do or is used to doing – a feeling of being left behind.   

                TIME FOR SOME SMALL-TOWN QUIET

                           By John Pixley

   Whew!  It’s May.  I can take a breath! 

   Whew!  The colleges are wrapping up another year.  Except for a single leftover concert and a frenzied weekend of commencements, complete with crowded streets, this month, things will be pretty much all quiet on the collegiate front. 

   It’s about time! 

   It seems crazy for me to say, but, just in case it isn’t clear, I’m glad that the semester is over.  Or, rather, I’m relieved that the semester is over. 

   I’m relieved that all the concerts, performances and other presentations are over.

   This really does sound crazy coming from me. I have always rhapsodized about how the colleges and their events – often free! – make Claremont all the more special, an all the more unique and wonderful community in which to live.  I wrote a whole column a few months ago declaring that we don’t need L.A, that there’s enough going on right here in Claremont, thanks largely to the colleges here, not to bother with driving on the freeways. There were many years when I bemoaned that Claremont was dead during the summer, declaring that the commencements were cause for literal mourning, with the ensuing months not only hot but devoid of the colleges’ activities. 

   But things have changed, as I’ve been finding.  Yes, the town side of the town/gown equation has changed. Claremont isn’t quite the sleepy little town it used it be, where the sidewalks were said to roll up at 5. The Village has practically become a hot spot, especially on weekends.  There is the Laemmle cinema.  And there is a good amount of live music, whether in the Village on Friday evenings, in Memorial Park on Monday evenings and at a few other venues. 

   I suspect, though, that, probably more significantly and importantly, more than Claremont has changed.  There are no doubt plenty of teenagers and young adults who think that Claremont is Dullsville, who think that nothing goes on here, especially during the summer, who put up with the freeway traffic to escape to L.A and the beach and plot how to bust out of here someday.  As I heard a student speaker say at the Pomona College commencement years ago, Claremont is “a nice place to live when you retire.”

   Well, I’m about that age when I’m ready to retire.  Yes, I’m older – or at least more disabled.  I am not able to do what I used to do, and I don’t have the energy to deal with getting to and especially from L.A.  And, frankly, I barely can keep up with all the concerts and performances, much less the talks, at the colleges, especially as they pile up in the last month of the school year.

   It’s not that I don’t miss my adventures in L.A.  It’s not that I don’t look forward to spending a few days in Santa Barbara later this Summer and that I don’t sometimes wish I had I had a house or apartment at the beach where I could spend weekends (or weeks) at least during the summer. I do – sure, I do!  But I have come to appreciate how much we have in Claremont and how easy it is – not like dealing with the freeway traffic – and be thankful for and content with it. 

   And, every now and then, we really see that Claremont isn’t such a sleepy little town.  The colleges may not be big-time like UCLA or Harvard (despite the “Harvard of the West” t-shirts), but there is indeed life on the campuses – for better and for worse. 

   I was reminded of this, to my amusement and, yes, irritation, this Spring.  In late April, as the media kept proclaiming that the wave of student protests over the horrendous war in Gaza devolving into ugly, heart-sickening, sometimes violent confrontations, sometimes culminating in arrests by city police, began at, was inspired by New York’s Columbia University, I was like, wait, didn’t this happen at Pomona College weeks earlier in early April? 

   Not that that it was something to be proud of (especially with the protesters masked). But we were a small, sleepy town that doesn’t count.

   Well, I for one am ready for a few, just a few, months in a little, if not so sleepy, town.

Still here - and still a happy Claremonter

 

   Don’t worry.  I’m still here. 

   I haven’t posted for a while – again – but I’m still dealing with this damn pressure sore on my butt.  It is tiny but still there, and I’m still having to lay down, to stay off it, as much as possible.  But I’ve been getting up to go to movies, plays, concerts, Quaker meetings – and also to write a bit.  (This has been challenging and frustrating.  No doubt getting up like this – playing hooky, so to speak – is a big part of why it’s taking so long for the sore to heal, but, as I keep saying to anyone who will hear or read, I need to have a life.)

   I managed to write two columns for the Claremont Courier.  Both happen to be about Claremont and why I love it, and both are below.  The first ran in January, and the second ran on Friday.  Enjoy! 

                   FORGET L.A. WE HAVE CLAREMONT   

   Who needs L.A?  I don’t. 

   At least not anymore. 

   There was a time when I told myself the only reason I would stay in Claremont where I grew up was that it was relatively easy to get to Los Angeles.  There was a time when I would drive to L.A three or four times a month to see terrific and not-so-terrific plays in tiny theaters in Hollywood and wherever else, to see museum exhibitions and eat at favorite spots, to go to the beach and sit.  There was a time – this was before my spinal surgery seven years ago – when I would get on the Metrolink in my wheelchair on my own once a week and take it to Union Station and then, more likely then not, take the Red Line subway and the 320 bus to get to wherever I was going, whether to see a friend in Beverly Hills or to spend a couple hours on the Santa Monica Pier or, if I was feeling really adventurous, cruise down the boardwalk to Venice.

   But not anymore. 

   Don’t get me wrong.  I loved L.A.  Still do – and miss it.  Indeed, I love L.A, ala Randy Newman. 

   But now I can’t take the train, not to mention the subway and bus on my own, and, more significantly, I hate the traffic.  Or, let me clarify, I always hated the traffic, but now I can’t take it.  And I pretty much won’t. Getting out to L.A may not be so bad – it may even be a breeze – but there’s always, always, no matter the day or time of day or evening, traffic coming back, which exhausts me and nearly ruins the day – and I’m not the one driving.

   In the last two years or so, I’ve ventured to the L.A area twice, to have lunch with friends and then attend their wedding.  I’ve been to Pasadena a couple times, but there’s still the return-traffic problem.       

   Besides, I’m finding that I don’t need L.A.  Literally. 

   There’s plenty going on here. 

   On almost every weekend during the school year, there’s at least one concert going on at the colleges.  There are impressive faculty and guest artist recitals and performances by rigorously trained student ensembles, not to mention offerings here and there by student groups.  No, these may not be the Los Angeles Philharmonic or Master Chorale, but, hey, almost all are free (a rarity at colleges, I’ve come to discover).

   There’s also lots of music presented in town, whether it be concerts in the park or in the Village on summer evenings, well-known artists playing at the Folk Music Center and various artists and local bands performing in a variety of venues, from churches to bars, around town. 

   As for theater, we have Ophelia’s Jump, just over the border in Upland.  I say “we,” because this production company is based in Claremont.  Even when it was an orphan outfit looking for a home, performing in whatever venue would take it in, I was saying that Ophelia’s Jump is like seeing a play in L.A without the drive and traffic.  There are also plays and dance performances, including by student group, at the colleges, more often impressive than not, and Claremont High, yes, puts on some pretty good productions. 

   Speaking of artists, there are also lots of exhibits at the colleges and around town.  Add in the numerous talks at the colleges and other events there and around town, not to mention the Laemmle Cinema, and there’s more than enough to do. 

   I don’t know if this is because Claremont and the colleges have changed or if I have changed.  I thought Claremont was pretty boring when I was younger – it wasn’t so lively then – and a teen and young adult may well feel the same today. But Claremont and the colleges are now a pretty good deal – a boon, in fact – for those of us who are older and can’t get around like we used to. 

   So, forget L.A.  Those who can put up with the traffic and the hassle can have it.  The rest of us have plenty to enjoy and love right here in Claremont.   

 

                ANOTHER REASON TO BE PROUD OF CLAREMONT

   I almost lost it. 

   She told about getting a phone call early one morning, knowing it was from her son. It had to be something serious, she knew, because her son doesn’t like getting up early. She said that by the time she reached the phone, a room and a half away, she had planned her grand-daughter’s funeral. 

   It turned out that the grand-daughter wasn’t dead, hadn’t been murdered, but such thinking, such a worry, is typical for this grandmother who lives in Pilgrim Place, because this grand-daughter is transgender and lives in Tennessee.  The southern state, on the other side of the country, literally and otherwise, isn’t known as a friendly state to those who aren’t straight and is one of a growing number with anti-trans laws. The grandmother also told about the grand-daughter having attended very conservative schools, where she was told that such “life styles” were sinful, and about the other set of grandparents who offered to pay for college if she didn’t use her new name. (The grand-daughter didn’t accept, saying, “You can’t buy me.”)

   As a gay man who came out in the 90’s when same-sex relationships were beginning to be accepted and same-sex marriage was about to be a hotly contested issue here in loosey-goosey California, I could relate.  As a severely disabled person used to being stared at, sometimes made fun of and who people constantly make the wrong assumptions about, I could relate.  A bit.  At least enough so that I felt my eyes begin to well up. 

   The grandmother, Elizabeth Moore, was speaking, remarkably enough, at the library one Saturday morning last month. I don’t know if her eyes were welling up, but she was clearly speaking with much emotion, with much concern, if not fear, for her grand-daughter and also no doubt for speaking about it in such a public setting. 

   She was one of three speaking on a panel that morning related to the current On the Same Page selection, This is How It Always Is,  a novel by Laurie Frankel about a large, rambunctious family dealing with the youngest child, aged about 5, suddenly insisting that he is a she.  The other two were a young Claremont couple, one of whom was a man when they had a child and then transitioned to a woman a few years later.  They talked about what this process was like and how their relationship successfully and happily survived.

   All the speakers were compelling and engaging, although hearing a grandmother’s fears for her grand-daughter time zones away was most griping.  But as remarkable as this Saturday morning discussion at the library was, as remarkable as this community read is in this time of proliferating book bans and anti-trans laws and violence, what was most remarkable was the audience. 

   The room was packed, and I could feel it radiating with love and support.  When it came time for the Q&A, people jumped up, all but cheering, eager to ask questions, to get more information.  Even when the questions were salacious, having to do with “what happens in the bedroom,” as one older woman cheerfully put it, they were asked with genuine curiosity, with wanting to understand, with wanting to support and to know how to help.  

    It was easy to see why, as was shared earlier, the trans grand-daughter loves it here in Claremont when she comes to visit twice a year, why she says Pilgrim Place is somewhere where “I can be who I am.”

   As I left that morning, my eyes were again welling up.  Or perhaps it was my heart that was swelling up.  Or both.  I felt elated – flat-out elated.  I was so happy, so proud, to be part of this community where this could happen. 

   I am just as excited to go hear the book’s author, Laurie Frankel, speak at the Hughes Center, 1700 Danbury Road, at 10 on Saturday, March 16. Go Claremont!  Keep on, keep on making me proud!

A change in the weather - and me

 

   It’s raining today.  It rained hard last night, and it rained pretty much all weekend. 

   I say good and that it’s about time.  I hope it keeps raining.  I hope we have another year like last year, when it rained an unusual amount, an extraordinary amount here in Southern California. 

   It feels really odd to be saying this. 

   For most of my life, I had mixed feelings at best about rain.  I knew that we needed the rain, and I enjoyed the cooler weather that usually came with rain, but it is very inconvenient to be out in the rain in a wheelchair.  For years, I would have a big rain poncho draped over me and my wheelchair and thought nothing of zipping all over town in my wheelchair in the rain come Hell or sometimes high water (but not too high, as I learned when water got into the motors and I got stuck a few times). I sometimes looked like a big tomato cruising along.  Or perhaps I was like the guy I saw one very rainy New Year’s Day as I was leaving Santa Cruz who was standing along the road in a nice bright poncho and no shoes.  (I once did something like this when I was in my teens or twenties and ended up with a lousy cold.  Maybe the Santa Cruz dude learned a similar lesson or – sadly more likely – maybe he needed help and hopefully got it).

   After a long while, when I was in my fifties, I got tired of going out like a madman in the rain, and the rain became even more of a bother.  Now it meant I couldn’t go out on my own, without getting a ride in my van, and I hated it.  I literally cursed it. 

   Even when I was okay with good out in the rain in my chair, I preferred it when it wasn’t raining and I didn’t have to deal with a big, bulky, wet poncho, steamy glasses, etc. Rain was a pain.  I guess this was a primary reason I felt lucky to live in SoCal. 

   But things changed – Boy! Did they! – after I had spinal surgery almost seven years ago.  It is now harder for me to get out.  It takes more work and energy and is often a chore, even when I want to.  So now, it’s nice when there’s an excuse, like the rain, and I don’t feel bad or angry about not going out, like I’m missing out (unless I have to and go in my van). Who knew I would one day be grateful for the rain for making it okay to be lazy!

Happy New You Year - and Merry Christmas!

 

   Happy New Year! 

   Yes, it is a new year.  A new year has begun.  So, Happy New Year! 

   But, also, Merry Christmas!  Because Christmas isn’t over. 

   Yes, that’s right.  Christmas isn’t over. 

   In England and Mexico and most other countries, Christmas only starts on Christmas.  Remember the 12 Days of Christmas.  Remember Shakespeare’s Twelfth Night.  Christmas Day is actually the first day of Christmas.  Christmas actually goes on until Twelfth Night – January 6 – Epiphany, Three Kings Day in Mexico, when the three magi are said to arrive at the manger with their gifts for the baby Jesus.  In some countries, like Italy, gifts aren’t exchanged until January 6.

   It’s really unfortunate that, here in the U.S, January 6 is now associated with a very different, upsetting event. 

   That’s not the only unfortunate thing about Christmas in America. Here, as soon as Christmas Day is over, on the 26^th, all or many of the lights and the trees and the decorations start to be taken down, no more Christmas music is heard, there are no more Christmas specials on T.V.  It’s right back to business as usual.  When I was growing up, it was unusual that my family kept the tree up until New Year’s Day or just after (but no later).     

   Another childhood memory: when we were once watching the Rose Parade on T.V on New Year’s Day, and one of the marching bands was playing a Christmas song, I asked my mom why they were playing that song now that Christmas was over, and she reminded me that Christmas wasn’t over.  After all, we were still singing carols at mass, and people there were still saying, “Merry Christmas” which I also found curious for some years (yes, I was brought up Catholic).    

   And when we lived in London for a year, there were no Christmas specials on T.V until Christmas Eve, and then they were on until New Year’s Day (here, there are loads of specials aired before Christmas and then none or hardly any after Christmas). There was also no newspaper for three days, including Boxing Day, which drove my dad nuts – but that’s another story. 

   Anyway, I do find it unfortunate that we Americans are so eager to be done with Christmas, to pack it in.  It makes me sad and also a little nuts. 

   I get it that some people, maybe many people, are sick of all the buying and wrapping, all the clutter and busy-ness, the endless carols and old Christmas songs playing over and over everywhere.  Yes, take down the Santas and the snowmen. 

   But what about the lights, the lights the shine out and make the cold nights a bit less dark and perhaps a bit warmer, reminding us of the comfort and joy, the peace and goodwill that Christmastime is all about, supposedly?  Are we really tired of the colorful lights that brighten the dark and cheer us up in this bleak, dreary season?  Why does everyone rush to take them down, pack them away?

   Perhaps, after everyone has gone on a spending spree on gifts and feasts, the lights along with all the decorations and the all the songs playing aren’t useful anymore.  Perhaps, here, in this country where everything ends up being geared toward money and, most importantly, the spending of money, the songs and the decorations and the lights and the T.V specials aren’t needed anymore. 

   Unfortunate, sad, crazy-making indeed. A balm that I have come up with is, after taking my Christmas tree out, hanging a string of colored lights above the alcove framing the bay windows in my living room.  The lights are especially nice to have on during grey and/or wet days, and I leave them up until daylight saving time or shortly thereafter, depending on the weather.    

·         *  *

   Perhaps one reason why I don’t want Christmas to end, or the lights to go down this year in particular – and why I haven’t posted in so long - is that the last two and a half months have been a hell of sorts.  In my last blog back at least that long ago, I wrote about getting a pressure sore on my bottom and that I hoped it wouldn’t get that bad. 

   Well, it turned out I was hoping for too much. The sore got to be pretty bad – not nearly as bad as the massive one I got after my spinal surgery almost seven years ago, but it got bad enough, deep enough for the doctor to sternly tell me to lay down as much as possible, if not all the time. (When a doctor is stern, you know it’s serious, and you listen and obey.)

   So, that’s essentially what I’ve been doing since mid-October – laying down, except for meals, doctor’s appointments and a few events (like seeing Anita Hill speak at Pomona College). I won’t lie: it has been devastating. It has been super hard, Hell, like I said.  Not only has it taken me back to the year after my spinal surgery, when I was bed-ridden, making me all the more aware of being disabled.  It came during my favorite time of year, with the cooling weather, the unique light that comes in October and November and all the Fall colors. On top of this, I watched concert after concert, presentation after presentation go by and having to miss them. I feel like I’ve been robbed. All this has been devastating, like I said. At least I’ve been at home and not in a nursing home, like I feared and like the doctor seemed to threaten when he was stern and said that “more drastic measures” would have to be taken if I didn’t stay off my bottom. 

   The sore is much better now – the doctor is happy – but it’s still there.  I’m getting up more, for concerts, shopping, Quaker meeting, doing a bit of writing (like this, a little at a time), but I’m still lying down for a good part of the day.  This is still a pain, in both ways.  Pressure sores can take a long time to heal, sometimes plateauing at one stage, but I’ve been making good progress and hope to be back to business as usual, including posting more here before too long. Getting up more now may well be delaying the healing, but, as long as I don’t regress, I think this is vital for my sanity and to keep me from being completely in the dumps. 

   Is it any wonder that, this time in particular, I want Christmas, or at least its lights and hope, to go on for a bit longer. 

   What’s more, I’ve ended up with not having internet since early last week. To my surprise, and some horror, as one who didn’t venture onto the internet for years (for fear it would take over my life, as I heard and read reports of) and who continued to pay bills with checks and use snail-mail for years, etc, I have come to use and rely on the internet for a whole range of things.  Not only do I use it for e-mail, paying bills and the like, I rely on it to listen to the radio, read the Los Angeles Times and watch television (I no longer pay for a T.V service - I’ve come to really like watching what I want when I want to watch it and to watch it without commercials!). So, other than getting up to write this in spurts and watching a few shows one of my attendants knew how to download onto my tablet using his phone and recently using the slow and spotty hotspots on my attendants’ phone, I was lying down with no radio to listen to and no television to watch.

   Talk about disabling!  Talk about devastating! 

A pain in the ass

    Lately, I’ve been wondering if I should change the name of this blog, perhaps to something like The Aging Queer.  Or even Queer Interrupted.
   Many of my recent posts, in the last year or so, have been about increasing limitations, like not being able to travel as much, and dealing with and finding ways to compensate for them (or not). It seems that this has been the running theme, that this is now what this blog is all about.  
   I have developed, yes, a new limitation.  This one is painful, sometimes quite painful, literally and otherwise.  I now have a pressure sore on my butt, in the same place as the one I had after my surgery but nowhere near as horrendous as that one. Nevertheless, it has gotten to be quite significant, and, strangely enough, I feel this one.  (I guess the nerves back there have come back, which I guess is a good thing?) It is like sitting on a walnut.  Yes – ouch!  
   (One of my attendants and I have figured out that I must have gotten it while I was in the hospital for four days in July – like how I got the first one.  Unfortunately, I was not aware of it and went on with life as usual – and not so usual, going on a four-day trip to the Central Coast – and it was some time before I could get an appointment with the wound specialist.  There was some talk that my Roho cushion was the culprit, but one test disproved that, and, besides, I just learned that, insanely, I’m not eligible to get a new one for another two years!)
   The wound is being treated, with medicated dressings being stuffed into the wound every night.  Okay.  But I’m also lying down for about an hour and an half during the day, and I lie down after dinner or after I get home if I go out in the evening. I really hate having to lie down like this.  I resent this.  It really cramps my style, as they say.  It gets in the way of things I want to do (including maybe going out for the day). It funny that two or three years ago, I liked lying down like this, but not anymore, now that I’m doing more things!  Also, it impacts me in other ways.  Like, yes, I can still go out on my strolls, which I especially enjoy now in the Fall, but going over all the bumps in the road and on the sidewalk does hurt my butt all the more. I’m also checking out different pain relievers – Alleve, Extra-Strength Tylenol, Motrin. The doctor won’t prescribe any, and I want to stay away from opioids.   
   What I really don’t like, what I really worry about, is that the nurses at the wound specialist keep saying that I need to lie down more.  I fear that I won’t really heal, that the pain won’t go away, unless I lie down much more if not all the time.  I don’t know if I could handle this.
   The other night, my attendant said the wound is looking a bit better.  Hopefully, the doctor will also say this when I go back on Monday.
   Don’t worry.  I’m not changing the name of this blog.  I’m not ready to.  As the name of my favorite disability rights group says, I’m not dead yet!