Going with the flow - not

   I’ve got my penis back.  Yay!
   Literally.  This isn’t a shocking opening line I’m using to get you to read this post!
   Late last month, while I was traveling, I stopped urinating, and I had to go to a hospital emergency room and have an internal catheter put into my penis.  I normally use a catheter, but it’s a condom catheter – and for good reason.
   I use a catheter – a condom catheter – because it’s convenient, because it lets me pee without waiting for one of my attendants to assist me, not because I don’t have feeling in the area (or anywhere else). I have complete sensation.
   Because of this, having an internal catheter inserted into my penis is incredibly painful.  It is a slow, deep burn going into my penis, like the wall of my urethra is being torn little by little. Sure, this is okay for a guy who has no feeling below the waist or neck (and therefore doesn’t feel when he is peeing and needs a catheter), but it’s no fun, to say the very least, when a guy can feel his dick.
   Once the thing – it’s called a foley – is in, the pain subsides eventually, but it’s not comfortable at all, and a tube coming out of your dick looks like a Dali painting.  You worry about the tube being pulled – will it come out? (No, there’s an inflated balloon inside your bladder. Dali again.) – and it hurts when you get a hard-on, with your penis squeezing the hard tube.  Like I said, no fun.
   There’s also the fact that pee can and will come out at any time, so the tube pretty much needs to be attached to a bag at all times.  And, as with pee coming out, things can go in at any time, so there’s a high risk of infection.
   Because of this – I got a bad urinary tract infection – and because of some traveling I was doing, I had the catheter in me for more than two weeks this time.  I’m still dealing with the infection, but at least the fucking catheter is out.
   Yes, this time.  This was the third time I couldn’t pee and had to be catheterized.  The first time was in 2000, and the second was about ten years later.  In all the cases, I was traveling, and not only did I not pee for 18 hours or so, I felt no urge to pee.  It was like I, my body, forgot about peeing.
   I can’t get an answer about why this – it’s called urinary retention – happens.  When I look online, it appears that it’s not uncommon for people with Cerebral Palsy to have urinary retention, but the few urologists I have seen say they don’t know.  They don’t appear very concerned and act like it’s not a big deal, like it’s another thing I live with, like not walking.
   But it’s a big deal for me – a huge, traumatic deal.  I don’t like worrying about when or if I pee, and I wish I knew why this happens and how I can make it not happen.  (I’m now taking Flomax, and I’ll see if that helps, but what about the C.P connection?) I don’t like not having my dick and all the fun things it can do.  Or, really, not liking my dick.            

He understands me

   I have written here before about my friend Carl.  In fact, he and I collaborated on a post in May, after he visited from up north and we took the Metrolink train to Los Angeles to attend a Bernie Sanders rally.  We have an unique friendship, one that has evolved and continues to evolve in remarkable, sometimes challenging, wonderful ways. 

   One of the most remarkable and also challenging and wonderful aspects of our friendship is that we both have impaired speech, caused by the Cerebral Palsy that we both live with. Carl’s speech is a bit less difficult to understand than mine, but it is nonetheless a difficulty that we both deal with constantly.  

   When I first met Carl, talking to each other was quite difficult.  Not only was it hard to understand what the other was saying, but it was hard to understand when the other repeated what the other said to make sure it was understood correctly.  It was a headache and, at least for me, a bit scary, and I kept asking my attendant to act as an interpreter.  Carl insisted that it was important that we keep talking to each other on our own, and, as is often the case, he was right.  In the earlier post, we wrote about discovering how to use our various devices to help in this process, and Carl even got this old dog to learn the new trick of conversing with him on the Skype-like Google Hangouts with the help of a texting feature.   

   I am very happy that Carl and I are now able to talk to each other with no or little assistance.  We sometimes use our devices, but it’s now really a matter of ease and how we feel.  Rarely is it a necessity.  In addition to being liberating, it’s a delight to me that it’s like Carl and I have our own language that no one understands.  We are like two deaf friends talking in a crowd of hearing people. 

   Recently, we were talking to a friend of Carl’s.  I said something, and the guy looked at me quizzically, having no idea what I said.  Carl repeated what I said, and the guy understood and said, “Really?  You got all that?” Carl and I just looked at each other and laughed.  It gets even funnier when someone doesn’t understand us and we understand each other.  Or when someone is absolutely clueless, thinking they understand us when they clearly don’t.

Another Nader?

     Don’t get me wrong.  I love Bernie Sanders.  I love the way he’s firing up young people – and also many others.  I love the way he talks about economic and environmental justice and inclusion for all, and I love the way he gets folks all excited.  Hopefully, this excitement leads to action, including voting. 

   No, don’t get me wrong.  I’m a Bernie Bro.  I feel the Bern.  Anyone who read my post last month about going to a Sanders rally – kind of – knows this. 

   But I’m concerned.  I’m concerned about the mixed messages Bernie is sending and the mixed messages some of his supporters are sending.  I’m concerned that he will end up being another Ralph Nader and give the election to Donald Trump. 

   Remember when Nader ran as a Green Party candidate in 2000 and got enough Democratic votes so that George W. Bush won by a hanging chad or a few hundred?  (I was one of those “Nader Democrats.” My mom was furious when she found out.)

   It is disturbing enough that some Sanders supporters have been rude, uncivil and even violent, threatening delegates who say they support Hilary Clinton, throwing chairs at Democratic party meetings.  It is disturbing that Sanders hasn’t totally condemned this behavior and sometimes blames and goes out of his way to agitate the Democratic party. 

   What’s even more disturbing, what really concerns me, is that this doesn’t help Clinton in what should have been her easy effort against Trump. But that’s not all.  There have been reports that some Sanders supporters say they’ll vote for the mean-spirited, ignorant and reckless Trump in November if Clinton is the Democratic nominee. This may be just another bizarre twist in this wild campaign, and hopefully these Bernie Bros will calm down and act and vote sensibly, but the prospect of Sanders supporters giving their support to Trump not only makes no sense at all; it is downright alarming, downright terrifying if it means that Trump is our next president. 

[NOTE: I will be not posting or posting regularly in the next two or three months because of traveling, etc.  I may post here and there in the meantime, but I’ll resume my regular posting in August or September.] 

That i-word

   Some years ago, a woman who was attending my Quaker meeting at the time approached me after meeting for worship one Sunday.  She told me that she kept a picture of me on her refrigerator and that looking at it always made her feel better.  I just smiled and looked at her, not knowing how to react. 

   I was a bit freaked out.  It was a weird thing to say – even creepy.  For one thing, why did this woman, who I wasn’t close to, keep a picture of me on her fridge?  (This must be how film stars feel – and I’m not a film star!) And why did seeing me make her feel better?  Was it because it reminded her that at least she wasn’t disabled, not to mention severely disabled? 

   Or was she just being nice saying this? 

   Or could it be I was being negative and cynical? 

   For most of my life, I have had pretty much that attitude when people said things like this to me.  I have had real problems with the i-word. For years and years, when people told me that I’m inspiring, that I’m brave, courageous, determined, etc., I would cringe, to say the least.  Really, I hated it.  I thought these people were just being nice.  I thought they were being patronizing. 

   It was like they were taking an air-brush to me, glossing over what I was saying, not seeing what my life is really like. 

   In recent years, though, my thoughts on all this, on the i-word, have been changing (or trying to change). I am seeing that when people say I’m inspiring, it’s because, for the most part, I really do inspire them.  I see that when they see me out there, being brave, determined, it makes them feel more like getting out there and being brave, determined, etc.  I see that it’s not about me, that it’s not about being nice to me and trying to make me feel good.  It’s about them and what they get out of me. 

  I see it when a gay man thanks me for giving him the courage to get out, to be out and be himself. 

   I see it when I meet disabled people and feel energized seeing the different, sometimes better ways they do things and also seeing that I’m not alone.  Yes, I’ve come to realize, I find disabled people inspiring! 

   Sure, this being inspiring is still weird.  It feels odd and phony that what I just do to live my life is so admired, held up to such a high esteem.  It is like a responsibility, a weight, that can be a pain.  On the other hand, if I can help people by giving them strength and courage, by moving them and empowering them, by, yes, making them feel better, cool.  I kind of like it.  At least it’s better than being angry and cynical and always suspicious of people. 

   Now the question is how do I deal with this responsibility, which really can get to be a weight and be quite draining?  How do I handle being inspiring when I don’t feel inspired or inspiring?  And what about when it’s hard to tell whether someone loves me because of me or because of how I inspire them?  Or where is the line – or is there a line? 

Wanting to see Bernie

He really wanted to go. He really wanted to see Bernie. 

My friend was visiting for the weekend, and I had made plans for a special evening. I had a nice dinner ready (spaghetti with red pepper sauce, asparagus, lemon tart), and then we were going to go to a symphony and choir concert at the Colleges here in Claremont – they were doing Camina Burana by Carl Orff. It was going to be special. 

It was a special visit. My friend, Carl Sigmond, and I had met for the first time last summer at Pacific Yearly Meeting after hearing about each other for years. We had exchanged emails since July, but this was his first time in Claremont. He has Cerebral Palsy like I do, uses a power wheelchair like I do, and has impaired speech like I do, and he came here on the train on his own from where he lives and works in Nevada City, CA, a good eight hours away. I like how he is very independent and very smart and how he is not afraid of doing things. I like how he is a lot like me. I haven’t had anyone in my life quite like him, quite like me, at least in a very long time. 

I had this nice plan – to make his last evening here special – but then we heard that Bernie Sanders was speaking in Los Angeles that afternoon. He looked online and saw that we could go see him, and he really wanted to go, saying that he loves Bernie and that this was a great chance to see him. He was so excited that I knew that Carl Orff and a symphony and mass choir wouldn’t cut it. 

So we took off in our wheelchairs, with all our devices and gadgets. The plan was for the two of us to catch the 4:17 p.m. train a few blocks from my house, get off at Union Station, and then go a few blocks to the park in front of City Hall where Bernie would address a May Day rally. Carl would text my attendants on the phone mounted on his chair and let them know where and when to pick us up in my van, since the trains don’t run late on Saturday. We would all go out to dinner on Olvera Street. That was the plan. Sweet! 

The train ride gave Carl and I time to talk and get to know each other more. It gave us time to learn more how to speak to one another, how to understand each other, how to position ourselves to see more of each other. 

In L.A., we ventured out and zipped through the crowds and over the rough streets and sidewalks, passing over the US-101 freeway. We each had ideas of the best route to get to City Hall, and we kept catching up with each other. I did most of the catching up, as Carl got more and more excited and could barely stay in his chair, ecstatic to see Bernie. 

When we got to the park, there was a crowd with banners and chanting and all the things you would expect – I was right at home in my overalls – but it was nothing like the Sanders rallies you see on T.V. Carl, maybe sensing that something was up and being considerably less shy about speaking to strangers than I am, asked a person in a bright red Bernie shirt where Bernie was to be speaking, expecting full well that we would have to stand in line, go through security, etc.. Carl knew the drill. The woman replied, “Mmm… I don’t... He might not be here. I don’t know. That would be nice.” In other words, Bernie wasn’t coming – sort of like Godot. The woman, with kind, smiling eyes, was letting us down as gently as she could, albeit in a patronizing tone. (I later read that Sanders was in Washington, D.C. at a national press dinner and that this L.A. gathering was essentially a May Day labor rally. Carl realized later that the Sanders campaign website had it listed as a Bernie Sanders rally, rather than an official event.)

Carl was bummed and quite embarrassed, knowing how excited I had been for the special evening in Claremont. He told me that he was sorry, and we returned to Union Station, where we talked more while we waited for my attendants to come with my van and go out to dinner with us. 

But I wasn’t sorry. I wasn’t sorry at all – about not having the dinner I planned and not going to the concert, about going all the way to L.A. and finding out that Bernie Sanders wouldn’t be there. As far as I was concerned, we had seen Bernie. Or, at least, we had felt the bern. 

I sure felt it. I felt the bern when I said okay and took off on the train with my new disabled friend, leaving my attendants far behind. I felt it in the freedom in being able to take off, together, in our wheelchairs, to go somewhere 30 miles away on our own. I felt the bern in the ability and the opportunity for us, with our eye-catching spasms and our hard-to-understand speech, to go where we want and do what we want, just like anyone else, just like any two friends. 

No. I wasn’t sorry at all. What Carl and I did that day, feeling the bern, was so much better than any Orff concert. (And this one was pretty good when I went to the second performance the next afternoon after my friend left to return home.) 

[Thanks to Carl for some editing and tweaking here - and more.] 

The new backlash

   I was only a toddler when the U.S Supreme Court outlawed segregation in public schools. I have no memory of the ruling and its aftermath.  But I have long heard about the historic decision – among the most important in the court’s history – and the strong, sometimes violent reaction to it. 

   I learned about how there were loud protests in the South, about how black students were jeered and taunted and even attacked when they arrived on a “white” campus.  I heard and read about schools and communities trying to defy the new law, like school districts suddenly claiming to be private or just ceasing to exist.  I understood that school desegregation didn’t happen overnight, that it took years to implement and achieve.

   The same is happening more or less in the wake of last year’s Supreme Court’s ruling that said that gay marriage can’t be banned anywhere in the U.S.  This isn’t or shouldn’t be surprising.  What is perhaps surprising is how the angry, defiant reaction is more subtle and sneaky. 

   Yes, there has been a county clerk or two or three refusing to give marriage certificates to same-sex couples, but there haven’t been mobs blocking church doors and throwing rocks at gay newlyweds as they leave the church. 

   Perhaps there were more subtle reactions to the Brown vs. Board of Education ruling that I’m overlooking or that I haven’t read about, but what we’re seeing in the wake of the gay marriage ruling is more along the lines of bakers refusing to bake cakes and photographers refusing to take pictures for same-sex weddings – or at least trying to. 

   And this is being done, we’re told, not as a protest against gay people but to protect religious rights, religious freedom. We are told that providing services at gay weddings and the like means that people have to do things that go against their beliefs and religion.  Laws are being enacted, as in North Carolina, that allow people to refuse to provide services that violate their religious beliefs. 

   This is tricky stuff.  Being able to act or not act on one’s religious beliefs – religious freedom – is really important.  As a Quaker, I cherish the ability not to take part or contribute to warfare.  But when I carry out this freedom, I’m not hurting anyone or denying the rights of others.  It is hard to think that these new state laws, which have been implemented in varying degrees of success and often resisted, including with boycotts, are not a sneaky way to deny gay people their rights. 

   All the more so when the new laws go out of the way to make a point of doing so.  For example, the North Carolina law prohibits local ordinances, such as one enacted in Charlotte, against anti-gay discrimination.  What’s more, these laws often encroach into areas that have nothing to do with gay marriage.  Many, including the one in North Carolina, even after some tweaking in response to public outcry and boycotts and that many LGBT advocates called insubstantial and the Democratic attorney general, Roy Cooper, labeled “a day late and a veto short,” require transgender people to use the public restrooms and locker rooms that match the gender on their birth certificates.

   This battle over bathrooms and which ones transgender people can use is particularly telling.  It’s as if the anti-LGBT folks said that if they can’t save marriage, they’ll go after bathrooms.  It is argued that these restroom laws are to protect privacy. 

   But I think a comment made by North Carolina Republican State Senate Leader Phil Berger reveals what the restroom laws and also the religious freedom laws are all about.  He criticized Atty. Gen. Cooper and the “left-wing political correctness mob…who will never stop trashing North Carolina until they achieve their goal of allowing any man into any women’s bathroom or locker room at any time simply by claiming to feel like a woman.”

  Yep, that’s an actual quote from a state senator.  Sure, these people would love to go out and block church doors and riot over same-sex newlyweds, but they’ve grown to be too sophisticated and smart for that.        

Fighting for breath

   “It creates enormous obstacles for anyone wanting to either expand a business or site a new business…”

   And so the business argument against environmental safeguards goes on.  But at least this sentiment, expressed by Bill La Marr, executive director of the California Small Business Alliance,  didn’t stop the Los Angeles City Council from adopting new rules, dubbed Clean Up Green Up, that will ease air pollution is some of the area’s poorest communities.  This comes after decades of complaints about unhealthy air and its effects, and the rules will include, among other things, more buffers between factories and homes and high quality air filters in new housing within 1000 feet of freeways. 

   These days, unfortunately, this isn’t often the case.  As I explored in a column in the Claremont Courier last month, it seems that businesses and developers are getting the upper hand. 

           A DECISION TO GO BACK TO A HAZY FUTURE

   It used to be “Beware the Ides of March.” Perhaps now it be the Spring Equinox, coming Sunday, that we should beware. 

   After all, “having jobs [is] just as important for a person’s health, for a family’s health, as having clean air.” That’s what Larry McCallon, the mayor of Highland in San Bernardino County and a newly appointed board member of the South Coast Air Quality Management District, thinks. And it looks like he and the other new Republican members of the panel of 13 charged with adopting pollution control regulations to protect the health of the 17 million people here in Southern California are doing what they can to put oil refineries and other heavy industries first. 

   That Winter is ending may not mean much for us in Claremont, all the more so when the monster El Nino has been pretty much a no-show here.  With days and weeks of warm, clear weather since early February, the first day of Spring, March 20, is merely a date on the calendar. Even so, I’ve always had a soft spot for Winter in Claremont. 

   This is because, although it may be warm and dry, it has always been clear, refreshingly clear, here in Winter.  There have always been clear skies, with little or no smog, during the Winter months.  This was when we had those iconic, heavenly views of snow-capped mountains with trees loaded with giant, bright oranges in the foreground.  The old joke was that this is when the colleges hired their new professors starting in August. 

   But this has been changing.  Not only are there no more orange trees, so to speak, and not only has there been not so much snow on Mt.  Baldy and the other peaks in recent years, the Winter months haven’t been the only clear, smog-free or less smoggy, period in Claremont. 

   In the last five years or so, I have noticed that the warmer days of Spring doesn’t always mean that we can’t see Mt. Baldy. Even in summer, it’s not so hot and smoggy.  Or it may very well be hot, but it is definitely not so smoggy, and there are days we can see our local mountains.  Perhaps this just makes it feel not so hot.  Last Summer, I wrote about being able to find a pleasant spot under a tree to read on a afternoon in July and August.  I couldn’t do this when I was growing up here and even ten or twenty years ago. 

   This isn’t wishful thinking or seeing things through rose-colored sunglasses.  According to the Los Angeles Times, since Barry Wallerstein became the executive officer of the AQMD in 1997, “pollution diminished sharply across the region.” This is significant, in that the agency’s jurisdiction, covering Los Angeles, Orange, Riverside and San Bernardino counties, has long been known to have the nation’s worst air. 

   With the coming of Spring and Summer this year, I wonder if this happy trend will continue and if we’ll be able to see Mt.  Baldy during the warmer months in future years. There has been another change, and, this time, it isn’t for the better. 

   Two weeks ago, in a closed-door session during its meeting in Diamond Bar, the AQMD board, with its new Republican members, voted to fire Wallerstein as its chief executive. The 7-6 vote was a repudiation of the long-time director’s tightening of air pollution rules which lead to the clearer skies here in recent years. 

  The board also reaffirmed new smog rules backed by oil refineries and other major polluters.  This vote revisited the one made in December, going against what Wallerstein and his staff recommended. The new rules will cut nitrogen oxide pollution by 12 tons a day instead of 14 tons a day, as was recommended, and will be less expensive for industry to implement. 

   These actions were taken despite desperate pleas during the public comment period.  Syvia Betancourt of the Long Beach Alliance for Children with Asthma told the panelists, “Your names will be etched on the lungs of our community members.”  Former AQMD Chairman Henry W. Wedaa wrote to the board expressing “grave concerns” about the move to oust Wallerstein – a move taken without public explanation. 

   According to the Los Angeles Times, the firing and the new rules “are expected to delay Southern California’s progress toward [meeting federal standards} by allowing industry to avoid costly air quality improvements.” The California Air Resource Board has taken the unusual step of criticizing the board decision, saying it violates state and federal laws and will harm public health, and the Senate Environmental Quality Committee has asked the board to reconsider its decision. 

   In addition, California Senate President pro Tem Kevin de Leon said he will introduce legislation to add three new members to the board, and a coalition of environmental groups, including the Sierra Club, have filed a lawsuit to prevent the implementation of the new rules. 

   Maybe this and all the outcry will better the situation – clear the air again, so to speak. It will be interesting to see.  The AQMD board’s move wasn’t unlike the California’s Coastal Commission’s decision in January to oust its long-time, respected executive director, Charles Lester.  The vote, also taken behind closed doors after hours of public testimony in favor of Mr.  Lester, is seen to favor developers who want to build projects along the state’s spectacular coastline. 

   This isn’t the first time the air quality board has been questioned recently.  It has been in the spotlight over its handling of years of dangerous lead and arsenic emissions from the now-closed Exide battery plant into communities of southeast Los Angeles County, its response to the massive gas leak near Porter Ranch and restrictions targeting smoke from beach bonfire pits in Orange County. 

   The board members who voted to fire Mr.  Wallerstein and not to reconsider the weakened smog rules insist that they are simply putting environmental needs and business needs more in balance. They would no doubt agree that their decisions merely reflect what David Englin, the executive vice president of the Los Angeles County Business Federation, says: “Children deserve to breathe clean air and they deserve the healthy homes that result when a parent has a good-paying job.”

   Yes, I agree that having a good-paying job is “healthy,” but I wonder if Mr. Englin, Mayor McCallon of Highland and others on the AQMD board have considered that having a good-paying job does no good if one can’t do the job because of asthma or other breathing problems caused by chronic smog. Or because of having to constantly take care of a child with a breathing ailment due to air pollution. 

   This is the question.  Even more than whether we can see the mountains for more than a few months during the year – although it would be nice if we can keep doing that.