Mind over matter - two years later

   I have always heard and read about the power of the mind.  I have been told since I was a child that you could do anything “if you put your mind to it.” I have read numerous books and articles about how people have essentially healed themselves or have improved their health with positive thinking – some talk of the “power of prayer” – and such brain-centered techniques as bio-feedback.  Isn’t this what happens, after all, when people “kick the habit” or go “cold turkey?”

   The fact that I’m writing this, now two years after my last posting, is proof of this power of the mind. 

   I’m seeing it most vividly now, two years after being diagnosed with osteomyelitis, a very rare viral disease that attacks the bones, and needing emergency spinal surgery on February 28, 2017, after two weeks of debilitating pain in my neck.  The surgery, although it relieved my extreme suffering and frankly saved my life, left me far more disabled, paralyzed from the chest down, with my right arm contracted and very limited use of my left arm, and needing 24/7 attendant care – in addition to requiring pretty much complete assistance with daily living activities, I’ve had to be turned every 2 hours because of a horrific bed sore I got while at Pomona Valley Hospital after the surgery and which is now at last pretty much gone – and needing a g-tube for liquids and medications, an internal catheter permanently and assistance with bowel movements.  It also left me with considerable neuropathic pain, with my feet and legs feeling like hot rubber or sometimes steel but otherwise with no feeling, even as they frequently spasm, sometimes quite painfully, and with the palm of my hands constantly tingling and feeling like they’re being shocked when touched (I can’t have my finger nails trimmed without my hands being iced).  I have come to the conclusion after much of this time that the pain is even worse than being paralyzed and not having sensation – other than pain! - over much of my body. 

   Actually, I saw it before now, when I gave up taking various heavy-duty pain medications, including Fentanyl and Tramadol. Yes, this left me in pain or more pain, but I chose to deal with the pain and be more alert and alive. I now take only Gabapentin and, most effectively, cbd oil for pain. I have also given up on seeing new doctors, even pain doctors, in an effort to get answers to what has happened to my body and how to deal with it, as they only want to give me more drugs and really, I’ve realized, don’t know the answers.  The best explanation I’ve gotten, as blunt and hurtful as it was, is that my spine was damaged, injured, during the surgery, as necessary as it was, saving my life. 

   I have made steady progress in the last two years.  After being in a nursing home for four months after the surgery – the last thing I ever wanted but not as bad as it could have been, as I discovered when I stayed in another nursing home for a few days after another hospitalization last summer – I came home to a hospital bed equipped with an air mattress in my living room and a reclining manual wheelchair.  Outings, even to the backyard, were very much the exception and continued to be so after a physical therapist, with my urging, got me into my power wheelchair. As big of a step as this was, and even with pillows propping me up in the chair and other modifications, I still needed much assistance in going out, even if I was able to be left alone at a theater, and I needed to be home in time to lie down for a couple hours.  I did go on longer outings, such as to Los Angeles, and also on trips to the Bay Area and other destinations, but these involved much planning and preparation, not unexpectedly, and, more notably, were marathon, almost heroic, efforts. 

   Fast forward to now.  Yes, fast, for things have progressed in the last few weeks or month.  The best advice I’ve gotten was from a doctor who I had in the first nursing home and who I didn’t like.  He told me I can do whatever I want – it all depends on how I deal with the pain.  If you put your mind to it.  Last week, I suddenly began staying up in my chair all day, and I have been going out on my own, venturing further each day.  The other day, I came home from a concert at Pomona College on my own, and I went on my own to the Village, downtown, the next day.  Earlier, I had an attendant drop me off in the Village, and I tooled around for an hour, with the distinct and powerful feeling of being back from the dead.  Last year, I told my therapists at Casa Colina Hospital, who have done wonderful work with me, that I wanted to be able to go to the Village on my own.  I have reached this goal. 

   And I’ve reached it overnight, so it seems.  It is like I woke up last week and decided not to be a patient, not to be convalescing, anymore, realizing that I also have pain when I lay down and that I rather be up in my chair, able to do things and go places.  It is like everyone said that I couldn’t do so much, that my activity was now severely limited (even as they encouraged and pushed me to do more, making me feel guilty), and I believed it, bought into it.  It was, I see now, easier that way. 

   It helped that I recently got a new chair, which is far better and safer for me, with a custom-molded back, a better-located joystick and a better cushion and harness and with improvements continuing to be made.  It also helped that it is getting warmer – with the neuropathy, I’m now hyper-sensitive to cold and, to a lesser extent, heat, and I often have hot and cold “flashes.”

   But I think what really happened is that, although there are still moments when I’m stunned at what has happened to my body, when I can’t believe I can’t turn pages or turn the light on and think my life is Hell, I got sick of being sick.  I got tired of lying in bed and doing nothing.  I realized that I didn’t have to. I have no reason to. 

   I’m not sure how much I can do, how far I can go.  When I go out, going a bit farther than the time before, and I turn back to go home, I wonder why I’m not going farther.  For months, I have told friends that, when I’m able to, I wouldn’t go farther than the Village.  I probably won’t go much farther than the Village, but who knows? 

·         * *

   I have thought about and wanted to resume posting for a long time, but, again, I believed that I couldn’t, told myself that I couldn’t.  I am thrilled that I’m writing this, but I do have wariness. It is my hope to post one or two times a month – not as much as before and likely not as long as this – but I’m not making any promises.  I don’t want pressure, to feel I have to post, but I do want to post – perhaps more, perhaps less at times – and am happy to be doing so. 

A call

It is hard for me to write right now, so I will make this short and sweet.

What's going on with Donald Trump is outrageous and dangerous.

What are we doing about it? Whatever the fuck happened to Occupy and where are all the Berners? We need to get out there and make noise and trouble as peacefully as possible.

All we are doing is laughing like this is a reality show or a Saturday Night Live sketch.

(In memory of Leslie Gordon)

Playing (Fast and Loose) With the Facts

The camera doesn’t lie –

white is white and

black is black and

the colors shine for keeps –

except when the pictures are wrong,

are not right, are not nice,

when the video doesn’t matter,

is there but not there anymore. 

The newspapers aren’t wrong,

except when it’s time to trust

the blow-dried tan and smiling blonde,

to take their other word,

except when they can say

what is big and bigger,

what is scary and scarier,

what doesn’t go and what goes

when what you see is

something else made up,

when everything wrong

is everything great again,

when “you lie” is no longer

a shock ringing in the hall,

when truth is another lost chip

in this American gamble. 

Trouble with the talk box

   So my Dynavox Vmax speech device really began acting screwy on New Year’s Day.  I would click on one item and get another.  Very strange and not helpful.  It had been acting up, and it was something like 5 years old.  I was thinking of getting a new one anyway – I think I’m eligible for one through Medi-cal every 2 years – and now I had to. 

   I contacted my local Dynavox rep and was told I had to make an appointment with a speech therapist for an evaluation in order to get funding.  I just want a replacement, mind you.  I called for an appointment and got one – for next Tuesday, February 7, well over a month after I needed a new device.  And I wonder how long it will take for the new device to be approved and shipped after the evaluation. 

   What I want to know is this: what if I couldn’t speak or was even harder to understand? Not to mention all those who aren’t lucky enough to have access to this wonderful technology.    

That's fighting speech

   To be honest, I have not heard Milo Yiannopuolos, but, based on what I have read about him, I doubt that I would agree with anything he says.  I can understand why many students at the colleges where he has been scheduled to speak would be dead set against the flamboyant writer for the alt-right Breitbart News website who proudly supports Trump and has been denounced for propagating racism, misogyny and anti-Islam views.

   Still, he shouldn’t be stopped from speaking, just as I shouldn’t be stopped from expressing my views.  What’s more, he shouldn’t be stopped by protesters rioting, throwing rocks and concrete bars, setting fires and causing damage, as happened a few nights ago at U.C Berkeley, resulting in the campus being locked down.  (At least someone wasn’t shot, as happened when Yiannopuolos was scheduled to speak at an university in Washington a few weeks ago.) To say the least, it’s not constructive, accomplishes nothing.  It’s stupid.  It’s certainly not going high when they go low. 

   I happened to write about this for my Claremont Courier column which comes out today and which I include here.

                A STRONG ARGUMENT FOR STRONG SPEECH

                    

   Should a college allow a parade on its campus in honor of Hitler? 

   The young man, most likely a student, probably thought he was asking a trick question, something to stump or trap the speaker who had so authoritatively and confidently advocated free speech on college campuses.  Surely, such a heinous, obnoxious celebration wouldn’t be tolerated.  He had all but sauntered up to the microphone during the Q and A period with a grin, accepting the invitation to ask any and all questions as a challenge.

   “Yes.” The answer came quickly, without hesitation.  This wasn’t a trick question at all.  It may well have been typical, even expected, in such an audience. 

   The young man was clearly taken aback. It was obvious that he wasn’t expecting this answer, given so decisively.  “Thanks,” he said and began to walk away. 

   But no doubt the clear-cut reply was a challenge.  The young man couldn’t just walk away.  He quickly turned back around and asked, “Why?” issuing another challenge. 

   Geoffrey R. Stone is used to such challenges.  That much was clear when the University of Chicago Law School professor and former law clerk to U.S Supreme Court Justice William J. Brennan spoke two weeks ago at Pomona College’s Bridges Hall of Music.  The talk, titled “Free Speech on Campus: A Challenge for Our Time,” came late on Friday afternoon, a jolt capping an otherwise quiet first week of the Spring semester at the colleges.

   “What about a parade in support of Planned Parenthood?” Mr.  Stone countered.  After all, he pointed out, the agency has been condemned as one that “murders the unborn,” as it provides abortions.  No doubt some would find this feting most offensive and unacceptable and that a college should have no part in allowing it.                        

  Or what about students staging parade in support of gay and transgender rights?  Or financial aid for undocumented students?  Or ending affirmative action, with the intent that color and gender shouldn’t matter? 

   No doubt some students, as well as faculty and staff members, will be offended if one of these parades were held on campus. Not to mention people in town. No doubt some will feel ignored or snubbed.  Some will feel threatened, even endangered. 

   But is feeling threatened the same as being threatened? 

   To Mr.  Stone, who chaired the University of Chicago’s Committee on Freedom of Expression, whose statement has been embraced by other colleges and universities and endorsed by the Foundation for Individual Rights in Education as a model for faculty and student speech protection on campus, the distinction is critical.  There is a very real and hugely important difference between feeling threatened and being threatened. 

   Of course, a college has an obligation to protect its students and personnel, to do everything it can in an effort to keep them from being harmed.  Mr.  Stone wouldn’t argue against that.  But, in his talk that was part of the on-going “Free Speech in a Dangerous World” lecture series, he made the point that a college isn’t obliged to protect its students from ideas and views that are different and challenging, that are perhaps threatening. 

   More than that, Mr.  Stone argued that a college should not protect its students and faculty from new and challenging ideas.  He maintained that, indeed, exposure to new and challenging ideas is a fundamental purpose of college. 

   As Mr.  Stone explained, this is a relatively new concept, established in the last several hundred years.  Until two or three hundred years ago, colleges and universities were not about being exposed to and debating different, diverging ideas and concepts.  They were operated by institutions such as the church and were focused on indoctrination and training in certain beliefs and world views.  Exploration of other ideas, especially those that caused questioning and doubt was the last thing these institutions wanted. And they were very much only opened to a privileged few, seen as prime candidates to promulgate these certain ideas and views – certainly not to all. 

   But now this concept of a college of a place where a wide-open exposure to and robust exchange of new and different ideas is being questioned and, in a surprising number of cases, scaled back.  It is ironic that, as Mr.  Stoned outlined, this scaling back is being initiated by students and some faculty, with demands for safe spaces, trigger warnings and the like. Locally, there was a request last year at Pitzer College for a housing option for only African-American students, and an annual reggae festival was canceled in the Fall, also at Pitzer, after some claimed that it was cultural appropriation.  Mr.  Stone presented an alarming list of recent cases where speakers have been disinvited and students have been sanctioned for expressing controversial ideas and beliefs at universities and colleges across the U.S. 

   Why is this happening now? The professor and author of the award-winning book on constitutional law, Perilous Times: Free Speech in Wartime, suggested a few possible reasons.  One is that this is a generation of students brought up by “helicopter parents,” over-protected, if not spoiled, with the belief that everyone is a winner, deserving of an award. Another is that there is much more awareness of oppression and discrimination and of those who have been oppressed and discriminated against. 

   Mr.  Stone stressed that this scaling back, whatever the reasons for it happening, is a swinging back of the pendulum and is detrimental, even dangerous.  He reiterated that gay and black and other minority students must be kept safe from harm, but he also emphasized that safe spaces and trigger warnings do not prepare students for life after college, “the real world,” where there are usually not safe spaces.  Instead, they should be allowed to protest – and, better yet, rebut – an offensive talk that has been allowed.

   Some may argue that protesting accomplishes nothing – look at those who belittled the recent women’s marches – but it is certainly more fair hopefully constructive than a controversial, perhaps offensive speaker being disinvited or not allowed to speak, as has happened in recent years at various colleges and universities. 

   I don’t know if Mr.  Stone’s speech being scheduled on the day of President Trump’s inauguration was more than mere coincidence, but it did strike me as most appropriate.  It seems to me that too many people have enclosed themselves in safe spaces, listening to and engaging with only those who are like-minded.  That people with different experiences and views – both liberal and conservative – are not talking to or even accepting each other is likely a big part of why we have ended up with “the Donald,” with his bigoted, fear-based and fearsome policies, as president. It’s why there was such an acrimonious, raucous scene at last month’s City Council discussion on a proposed ordinance promoting diversity.  And, what’s more, it is why we now have “alternative facts.”          

The people we don't want

   Does anyone know who Christopher Hubbart and Jeffrey Snyder are?  Do we remember them? 

   They keep showing up in the newspaper, their blank faces staring out at us – at least, Hubbart does.  But we really wish they wouldn’t.  We would rather forget them. 

   Hubbart has been showing up in the news for years.  He’s the notorious serial rapist, known as the “Pillowcase Rapist.” I first heard of him about 20 years ago, when people protested outside his parents’ house here in Claremont. 

   The protesters were upset about his imminent release from prison.  It wasn’t the first time to be released from prison.  The trouble was he kept assaulting and raping women, covering their heads with a pillowcase.  Time in prison didn’t help.  It seemed he couldn’t help it, couldn’t stop himself from raping. 

   A new state law was developed to solve this dilemma, allowing serial sexual predators, who appeared not to be able to control their behavior, to be held in a mental hospital after serving their prison terms.  They then could be released when it was determined that it was safe for them to be released safely into the community with certain restrictions. 

   This is a dicey situation – holding someone after they have served their time – made even dicier.  How can anyone be sure that an impulsive behavior has been controlled or tamed?  And what does it mean to be safe out in the community? 

   Last year, after years of searching and negotiations, Hubbart, now in his 60s, was allowed to move into a small house on a dirt road out in the desert outside Los Angeles.  There were numerous rules and curfews that he had to abide. 

   But even this wasn’t enough.  There was a chorus of protest from people living nearby, and, early last month, Hubbart was in the news again, having been returned to the hospital.  He had violated a few of the rules. 

   Was he really able to live in the community when it was so clear that nobody wanted him there?  Did it really make sense to try to control his behavior (that is, if he could) when it was obvious that everyone thought it was hopeless? 

   Around the same time, Snyder, a convicted child molester, was in the news.  A house that had been found for him to live in after serving his sentence was burned down “in mysterious circumstances.”

   It is no mystery that people wish to forget these men and others like them, who are clearly sick and desperately need help, wish that they would go away.  But is this fair? Do these men and others, who have completed their punishment, have any chance of getting the help they need to lead the life they should be able to live – yes, the life they have the right to live - when we don’t want them here, much less to enable them?

   Perhaps it isn’t or shouldn’t be surprising that building walls and keeping out those who are different or troubled is so easily attractive, so tempting.