Tuesday, February 4, 2020

For all to see


   Netflix has done it again.  Following films such as the extraordinary The Sessions, about a severely disabled man gaining sexual experience, and the less-successful-but-still-significant Speechless, the ABC sitcom featuring a boy with Cerebral Palsy (played by an actor with C.P), as well as its own Special, a remarkable comedy series about a young gay man with C.P (played by a gay actor, yes, with C.P), the online network has now come up with 37 Seconds, a most adventurous film from Japan. 
   37 Seconds tells the story of Yuma, a young woman with a beautifully expressive face and always bright smile who has C.P, uses a motorized wheelchair, lives with her smothering single mother and is a manga artist.  Tired of being the hidden assistant to an anime artist and “You-Tube sensation,” Yuma tries to sells her work to an adult anime publication but is told by a kind-but-frank manager that she needs to have sexual experience in order for her work to be genuine. 
   This disappointing and daunting request leads the ever-charming, determined and fiercely independent Yuma (reportedly played by an actress with C.P) on an amazing and quite unexpected journey, far beyond her initial venture into the red-light district and encounter with a male prostitute.  If this sounds heady enough, hold on to your seat.  This film doesn’t hold back and is bracingly edgy and intimate
as we see right off in the first scene when Yuma’s overly protective mother, who Yuma will later fight with, helps her to undress and bathe. 
   Sure, this film, as with many films, glosses over pesky details (like, does Yuma really have the money to pay for a prostitute and a motel, not to mention – spoiler alert – flying to and taking the train in Thailand?). And yes, Yuma is considerably more able than I was even when I was less disabled (for instance, her speech is normal, although soft, and she has far more use of her hands, with the ability to draw, etc.).
   Even so, it is, once again, remarkable to see someone like me on the screen.  Seeing someone who is significantly disabled – all the more, someone with Cerebral Palsy – portrayed more or less realistically gets more and more powerful. (I would have said remarkable again, but that implies something exceptional, and these portrayals are becoming less exceptional, which is what makes them so powerful.) Seeing portrayals like this is validating, liberating and empowering.  (Is this another way of saying – ugh – inspiring?  Okay.  So be it.  Also, I’m just waiting to see a character with C.P and with impaired speech who actually talks.  That’s coming – no doubt.)

Tuesday, December 17, 2019

Still here


   I recently wrote another column for the Claremont Courier which follows below. The fact that I’m continuing to write these columns says a lot. 
   It also says a lot – it is at least painfully ironic - that when the column came out in the paper a week and a half ago, I was in the hospital – again.   

                KEEPING UP APPEARANCES  
   “You’re alive!”
   I thought my traveling companion would die trying not to laugh or fall over in shock when the woman exclaimed this as he and I entered the motel’s front office. I had made reservations for the night, and this was the first night of his first trip with me.  When he had taken the job with me as one of my attendants several months earlier, he knew it would be some kind of adventure, but, clearly, he had no idea how much of an adventure it would be. 
   I had stayed at this motel a year earlier, and the same woman was at the front desk when a different attendant and I had checked in.  It was in San Jose – not that we were there to take in whatever (if anything?) it has to offer, but hotels there are much cheaper than those in Santa Cruz, one of my favorite spots and therefore one of our stops on that jaunt north, and it was a relatively short drive away on the scenic 17, at least if we timed our commutes to avoid the notorious traffic.  (I guess hotels aren’t the only things that are cheaper in San Jose.) 
   Although I was long used to people reacting to me in some unusual way, this was one of the most outlandish and brazen.  I couldn’t blame my companion for being bowled over.  After all, I may have been disabled and severely so, but I was in perfectly good health.  There was no reason to be surprised that I was still alive. 
   This was not long after I turned 50 and at least a few years before the spinal surgery I had two years ago that left me considerably more disabled but also - as the surgeon made clear to me later, leaving me in tears – saved my life. 
   “You’re alive” indeed!
·         *
   “It’s good to see you back in the land of the living!”
   Someone recently said this to me.  I could have been bowled over or have taken offense.  But I wasn’t and didn’t.  I just laughed, taking it in stride, as the more polite, more understanding “You’re alive!” that I knew it was. 
   It was a Pilgrim Place resident who has known me for some years who said this.  I was at the recent festival there, having gotten there myself in my chair, very much feeling back in the land of the living. Not only have I been going out more and more on my own, at least when it is warm enough with the neuropathy I now have (above 80 degrees – the Pilgrims were sweating it out this year, with the temperature being considerably higher for the two days of the festival), but, as in this case, I have also been venturing further and further.
   She went on to ask me if it was worthwhile – putting up with all the pain, the infirmaries – and to say that this is a hot topic at the retirement community.  I could indeed relate.  I’m not nearly as old as the residents there, but, as I have mentioned recently in these pages, it has been said that it’s as if I got old very quickly when I had the surgery.
   Yes, there are days when the pain in my legs and hands is particularly bad, when I have even less energy, days when I do wonder if it’s worthwhile.  Yes, with all the doctor visits and the many  trips to the emergency room – I have said that they should reserve a bed, preferably in one of those private rooms, for me (“The John Pixley Room”) – and the three (so far and hopefully only) hospital stays this year after going to my doctor maybe once or twice a year, my life has definitely changed, even if I’m not all that much older. 
   Yes, many people have expressed surprise that I’m still around, all the more so since I began appearing again in these pages after two years.  And, yes, I sometimes agree with them in being surprised that I’m up and about, much less still here. 
   While I’ve come to learn that my life will never be as it once was, that my legs will never regain sensation and what agility they did have, after hoping for the first year or so that my body would return to its former state, I’ve come to realize that this shouldn’t, that this can’t stop me from having a life.  If I can’t have my old life back, well, it was time to find and start a new life. 
   As I have written about in these pages, I’ve been attending concerts, including now at the college.  Music fans should know that we have an incredible bounty of free concerts in our small town, all the more so with the colleges and their many free performances – unusual, and unusually special, as I’ve come to discover. 
   I’ve also made return appearances at the Athenaeum at Claremont Mckenna College.  While I’m not going nearly as much as I used to, I have enjoyed the – yes, free, again – talks by the likes of Tara Westover, the author of Educated, a riveting memoir about growing up as the daughter of Morman survivalists in Idaho opposed to public education (and going to doctors) who went on to attend B.Y.U and then earn a doctorate at Oxford University in England; Samantha        Powers, President Obama’s U.N Secretary whose book, A Problem from Hell: America in the Age of Genocide won the Pulitzer Prize in 2003; and Haben Girma, a deaf and blind woman who was the first such person to attend Harvard Law School (as she recounts in her recently published book, Haben: The Deafblind Woman who Conquered Harvard Law).
   It has been a real joy to be able to go to, to show up at these events, as well as at movies at the Laemmle Cinema in the Village and plays at Pomona College and the as-good-as-L.A Ophelia’s Jump theater company’s venue just over the border in Upland.  Sure, I wish that I wasn’t so disabled now and that I was able to do all that I used to.  I wish that I had my old life back, but I’m very glad that I’m now able to find, to make a new life for myself and that here in Claremont is so much the perfect place for doing so.

Thursday, November 21, 2019

Trapped by the elements


   I went out on my own late on Tuesday morning.  It was a quick outing, about an hour – I went by the credit union and a bakery and then sat for ten minutes or so in a park-like quadrangle at Pomona College – but I wanted to be sure to get out.
   It was bittersweet.  Mostly bitter.  I had other things I was doing that day, but, as I say, I wanted to get out on my own like this.  One more time. 
   Sure enough, as I was heading home, I could feel the cold coming on.  That night, it began raining for the first time this Fall, and, according to the weather forecast, it will pretty much stay in the 60’s in the next ten days. 
   As I have learned in the last two months or so, I can’t go out when it’s below 80 degrees, maybe a bit lower.  Given the neuropathy I now have, my arm (and other limbs) tighten up all the more when it’s cooler, and I can have difficulty driving my chair. Things only get worse when it’s windy or damp.
   To say the least, this isn’t good when I’m crossing streets and railroad tracks.  
   So, it looks like I’ll be relying on rides to go out for a few months.  This is really hard. 
   It’s hard, because it was only in the Spring when I began going out on my own, began enjoying the freedom that that gave me, after convalescing for two years after my spinal surgery. 
   It’s also hard, because Fall is my favorite season, and I always loved going out in my chair when it was chilly and cold and when Claremont is particularly lovely.
   I should be thankful that I don’t live in Vermont or Massachusetts or many other places where it gets cold for real and where snow isn’t just on the nearby mountains – a pretty postcard we live in here.  A friend swears it will be 80 degrees on New Year’s Day “like it always is for the Rose parade.” I’m not so sure about that, but if it is – good – I’ll go out for a celebratory spin around the block (I’ll also fear the more drought and fires to come).
   Also, I want to explore if there are different clothes that I can wear that won’t be too difficult to put on and take off – another issue I deal with now – and that are warm enough for me when going outside but not too warm when I’m inside.  Unfortunately, with the harness that now holds me up in my chair, it’s not possible to put sweaters, jackets or hoodies – I loved hoodies – on me when I go out.  I have a very nice, very warm felt poncho that a friend made for me, but not seeing my hand while I’m driving could be risky, at least when I’m on my own.  I recently tried putting on a flannel shirt again after thinking it was too difficult to put on and take off and found it to be noticeably warm, so maybe that, plus a beanie, will allow me to go out when it’s cooler, if not really, really cold.  I will experiment and try out other things (any suggestions?).
   It was bad enough when, before the surgery, I would let rain stop me from going out in my chair (I didn’t years ago). Later on Tuesday night, when it did get much colder and you could smell the rain coming, my overnight attendant, who has worked for me for about a year and maybe a half, commented that, from what she knows about me, which is limited, I’d be out and about as soon as the storm is over. 
   If only!  She has no idea. 

Friday, November 1, 2019

An unexpected venture


   I have a confession to make: last summer, while in the San Francisco Bay Area, I visited the Rosie the Riveter National Monument in Richmond. 
   For years, I saw the sign for it on the 580 Freeway, and I was always intrigued. I had a couple hours to kill one morning while in the area last summer, and it turned out to be a fascinating outing. 
   Why is this a confession?  Why do I feel sheepish, even a bit ashamed, about admitting to making this visit?  Because I’m a Quaker, and I’m not supposed to support or have anything to do with war or war-making.  I have a few friends, including one non-Quaker peace activist, who, I imagine, would probably chide me for wanting to go to a place that glorifies war and those involved in making war.
   But this national monument, curiously tucked away right next to the bay at the end of a guarded industrial and port area, turned out to be much more than a war memorial. Besides, it includes a very pleasant, if chilly and windy, walk along the water’s edge that appears to go on for some length – something to keep in mind for future visits. 
   Yes, the small museum appears to focus on war-making, but it also tells the story of Richmond, showing how World War II turned out to be a time of tremendous growth and transformation, a boon, for it and nearby towns.  Being a community with a major port during a major war definitely had its perks.  More than that – and here’s where things get fascinating – the museum shows how the war was also a time of tremendous transformation, a boon, for women, lading directly, one can easily argue, to the women’s movement.
   As the museum shows, during the war, women were set to work stateside, doing non-combat jobs, such as preparing weapons and ships (riveting, etc.) and providing air transport (flying planes)for troops and supplies. This was part of a nationwide war effort, not seen since, in which everyone sacrificed and gave (rationing, victory gardens, etc.), and women were asked to and given the opportunity to do things like never before. 
   This was a huge change that was no doubt unintentionally radical and radicalizing.  Before the war, women – at least those who were married – stayed home and cooked and cleaned and took care of the children.  It is said, half-jokingly, that of the women who did go to college, most “got their M.R.S,” dropping out to get married.  After the war, many of the women were not happy about going back to their pre-war housewife lives or found it no longer satisfying.  Thus, it could be said that this sparked the beginning of the women’s liberation movement.       
   The museum also features a small display dealing with gay men and lesbians during the war – even more fascinating.  These folks, who were pretty much closeted at the time, also found themselves deployed in new jobs in the war efforts.  This gave them new and more opportunities to find each other, network and gather.  It could again be argued that this set the scene for further the LGBTQ liberation efforts that transpired later.        
   As I said, this was a fascinating little excursion.  It was a reminder that sometimes interesting and even pleasant things are found in the most unexpected places. Just like some actions have unintended, for-the-better consequences. 

Thursday, October 24, 2019

On retiring


   I have mentioned in recent posts that the spinal surgery that I had two and a half years ago left me much more disabled and having to severely cut back on my activity.  I also mentioned that at least one friend has noted that it’s like I got older a lot faster.  They may have said something about retirement. 
   I have been thinking about retirement - what does it mean to retire? does it mean doing nothing? -    as I’ve been wrestling with how much to cut back on my activity, how much to do and how much not to do.  I recently wrote another column for the Courier – the very fact of my doing so is very much part of this wrestling and experimenting – about this which was published a couple weeks ago.  Some years ago, when I was writing a regular column and wondering what to write about, a friend advised that I write about my experience in a way that would help others, that would relate to and possibly benefit the community.  I like to think I do a pretty good job of doing that in the column, which is below. 

                     NOT A RETIRING COMMUNITY  
   “It’s insanely hot,” I heard as the pedestrian light came on and I took off to cross Indian Hill Boulevard in the Village. 
   It was the Saturday before Labor Day, and it was pretty darn hot.  Nothing unusual there. 
   After all, it was September, and the county fair was up and running.  Both have been long known for coming with some of the year’s hottest weather. 
   I don’t know if the guy who spoke was a student at the colleges, but it would make perfect sense if it was. The colleges were set to begin classes on Tuesday.  (Strangely enough, after years of holding or even starting classes on Labor Day, the colleges took the holiday off this year.)
   And there’s the old yarn here about the colleges interviewing new faculty and students from back east in February, when Claremont was at its loveliest with blessedly balmy weather and ripe oranges shining against the snow on Mt. Baldy.  Then, the new hires and students show up in September, with Claremont at it hottest and smoggiest, wondering what they had done, what they had gotten into. The orange groves are pretty much gone now, but so are, thankfully, the horribly smoggy days.   
   Yes, it may get “insanely hot” here in September, at least according to those joining us from the New England state as well as probably those of us who call Claremont home, but everyone can be happy that there aren’t nearly as many Summer and early-Fall smog alerts as when I was growing up here. (It appears that the tough rules and regulations that made this decline happen may now be in danger of being rolled back.)
   No doubt the students and new faculty from afar have various impressions of this small town that they’ve found themselves in, whether or not they are wrong. I often wonder what goes through their minds as they amble past our evergreen landscapes, featuring blooms all the year round, and in and out and pass our not-so-old famed historic buildings, especially as they walk around in tee-shirts, shorts and flip-flops on chilly, even wet January and February days. 
   Some years ago, I attended the commencement ceremony at Pomona College to hear the featured speaker.  I happened to arrive early enough to hear the student speaker.  The young man described finding himself in Claremont, which he referred to as a “nice retirement community.”
   I thought this was interesting, considering that he was in the midst – actually on the edge - of seven colleges and graduate institutions.  Never mind that thousands of young people were being feted that weekend, and there was another graduate institute across  town. 
   But, then again, there are months when the students aren’t here, and Claremont is left on its own.  And just as this town is home to an unusual number of colleges and graduate schools, Claremont has more than its fair share of prominent – yes – retirement homes – Claremont Manor, Mt. San Antonio Gardens, Pilgrim Place – with thousands of older adults calling Claremont home.
   For better or for worse – I’d say for the better – this is a community in which we are very aware of retirement, in which retirement is thought about a lot.  Claremont isn’t a retirement community – indeed, we’re known as a college town – but retirement is a big part of Claremont. 
   I have become even more aware of this.  As I wrote here a couple months ago, because of health problems that I have dealt with in the last two and a half years, I have had to cut back on how much I do.  I have had to retire, more or less.  As I wrote earlier, one friend pointed out that it is like I got older, closer to retirement age, fast. And now that I think about it, I’m old enough anyway so that it won’t be that long before I’ll reach the typical retirement age.  (Really?)
   What I find myself wrestling with, even as I’m doing now as I write this, is how much to do and how much not to do.  How do I find the time and energy to write this when I need the time to get the rest I now need and when I need the time and the energy to attend all the medical appointments and therapy sessions I now have?  And what if, as has not been unusual this year, I have a medical issue that lands me in the E.R for most of a day or in the hospital for a week or two, throwing off my intentions to get this done? 
   I imagine that many of the older adults, the retired people, in this community deal with such issues.  But I have also seen over the years that I have lived here, at least in the example of those living in “the Manor,” “the Gardens” and Pilgrim Place, that retirement definitely doesn’t mean doing nothing, doesn’t mean giving up.
   There’s the old joke about folks getting even busier once           they retire, what with volunteering, traveling, spending time with grandchildren and whatnot.  Well, it’s not a joke, at least not here in Claremont. 
   Look at the Joslyn Senior Center.  It’s abuzz with activity, not only providing help for those with lessening abilities, such as in finding assistance in daily living and in regularly calling those who can no longer get out easily.  It also hosts an array of classes, arranges for many day trips and tours, provides lunch and other special meals and parties.  Many of the services the center provides to those who are less able are provided with the help of retired people now volunteering. 
   And then there are the folks that live in Pilgrim Place.  These retired ministers and other church workers put the rest of us all to shame – and not just with the two-day festival they put on each November. They are often in the lead, often ahead of the college students, in organizing and attending protests, whether to urge action against climate change, the on-going, seemingly endless war in Afghanistan or whatever they see as the latest injustice.  When the Occupy protest was going on, the Pilgrim Place residents provided food and bathing facilities to those camping out at City Hall. 
   I have been learning to see the visits to the E.R and hospital stays, like all the doctor appointments and therapy sessions as just things that are now just part of my life, rather than things that ruin my life.  This has definitely been an on-going challenge, but it beats seeing life as I know it as constantly threatened, endangered.  In the same way, for those living in retirement here, the nearby care facilities provide peace of mind as they go on living their lives as they can. 
   As I have seen with the older, retired people living here, retirement doesn’t mean giving up and doing nothing. Far from it, retirement doesn’t mean retiring from life. It means living fully, with various adjustments and safeguards wisely made and in place, as one now can.