Stay Steady

I am still lining up those who would like to be interviewed by me and have their stories posted here. Bear with me, the stories are coming and I will honor those who’ve maintained their will, their purpose, and their heroism in the face of some of the worst misery visited on our species.

Stay with me as I work to bring you the stories of those who face the demonized intruder who not only disrupts a life but also disrupts the lives of those who love the innocent target of pain’s demonic monster.

This ubiquitous demon feasts on those it targets for reasons unknown, or for reasons too unbearable for humans to comprehend.

Those dragged into the pit of mindless pain struggle to find the reasons for nearly unbearable pain, unbearable suffering. We, when the pain backs off just a bit, lash out, lash in, beg and demand answers to the unknowable question: Why? Why for god’s sake me? Why rip asunder me and my family? Why, goddamnit, why?

We might as well be shouting into a black well, a well with no sides, no depth, no beginning, and no end.

We shout our anger, our strength, our love and our hate, but mostly, in time, our despair. A despair so bleak, so cold, so hot, so all encompassing it rents the very fiber of existence.

Existence brought to its knees, existence wounded is an existence out of time. Out of time we rail, we weep, weep, beg and bargain. But existence so damaged, so altered is a veil that hides nothing. A veil torn, nay ripped asunder, ripped from the fabric of breath, of beat, of rhythm, of the veil of breath that breathes independent of the lungs we so honor, we so depend.

Yes, we are ripped, rented, wounded. We touch the very scars that announce our arrival at the godhead we so adamantly refuse.

We are who we are and that we know is the limit of all that we know. Our fabric torn, our fabic burned, tattered and repaired lies before us, a panting sled dog, a bleeding beast that begs for our love, our touch.

Touched. Yes, the best we can do is touch….

Tell us…why! Why……please….

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Suffering from pain: Share Your Story

I am embarking on interviewing and writing more posts about those who struggle with the demon of pain, how they manage, what things they do to help themselves live the best way they can. I intend to do about 20 to 30 more interviews and combine them with my earlier posts, look for themes and publish all in a book form.

I am interested in anyone who would consent to a completely anonymous interview for these upcoming posts. If interested or know of someone who might be, please contact me here.

I am looking forward to doing these kinds of posts as they are usually filled with tremendous humanity and, sadly, awful behavior of those with whom pain folks sometimes have to interact.

I look forward to hearing from you.

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Post by Dr. Jeffrey Fudin, pain specialist.

Is LA Times an OXY-Moron?
Posted by Jeffrey Fudin – September 19, 2016 – Dr. Jeffrey Fudin Posts, Guest Blog, Opioids & Politics
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written-in-stone
Let’s take a look. to see if the LA Times is in fact an oxymoron.

Merriam-Webster’s online dictionary defines moron as “a very stupid or foolish person”, but since this country treats corporate entities as people, I’d say LA Times qualifies. Their legal definition is “a person with a mild or moderate intellectual disability —used formerly — see also idiot.”

Other OXY-morons include anti-opioid zealots in the lay press, some propagandists, and politicians who persistently call OxyContin “synthetic heroin”. One who is skilled in the art and science of pharmaceutics knows this to be untrue. In fact, oxycodone is a precursor to oxymorphone, a CYP2D6 metabolite of the former. Oxymorphone is one substituent on the tertiary amine (nitrogen) different in chemical structure to naloxone as pointed out in a previous post Breaking Bad 2.0: Is it possible to synthesize Oxycodone from Naloxone?. That said, OxyContin, oxycodone, and oxymorphone are synthetic congeners of naloxone, an opioid receptor blocker with virtually no medical dangers and an antidote to what anti-opioid zealots otherwise describe as “synthetic heroin”: morphine, fentanyl, and heroin itself. Naloxone actually saves people from respiratory depression from opioid overdose. In fact, OxyContin is more similar in chemistry to over-the-counter dextromethorphan (the ‘DM’ in Robitussin DM) than it is to heroin. Truth be told, heroin is semi-“synthetic morphine” because heroin is essentially two morphine molecules synthetically sandwiched together by an acetyl group, more commonly known as vinegar. But alas, I suppose not knowing this science doesn’t make someone a moron; professing to know something you know nothing about is certainly short-sided, idiotic, and without a doubt approaches moronism.

On May 5, 2016 LA Times printed an OxyContin dosing article, “You want a description of hell?’ OxyContin’s 12-hour dosing problem” by Rion and Girion (two potential OXY-morons).1 In rebuttal, I wrote an editorial with Drs. Mena Raouf and Erica Wegrzyn in a highly regarded refereed periodical, the Journal of Pain Research, entitled “OxyContin was submitted and justifiably approved by the Agency as a twelve-hour dosage form”, to clarify the idiocy of LA Times authors Rion and Girion and the editorial staff that allows such nonsense to be published.2

I encourage anybody that is interested to look at the JPR article mentioned above by clicking HERE. But, as an educational exercise, I thought it would be nice to engage an up and coming Student Pharmacist Lindsay Worthmann to summarize our JPR editorial and the various issues by posting a guest blog. Overseeing Lindsay’s writing was Dr. Erica Wegrzyn, my current PGY2 Pain and Palliative Care Resident. Here for your information and entertainment is what both of these young professionals had to say…

Ms. Lindsay Worthman and Dr. Erica Wegrzyn:

As we all know, just about every aspect of life is governed in some way, shape, or form by Big Brother and/or the letter of the law. Fortunately, there is some degree of leeway in medicine. Behold, the off-label use function.

When OxyContin came to market, it was intended for every 12-hour dosing (Q12H). This is how the product was approved by the FDA and what the manufacturer (Purdue Pharma) marketed and subsequently endorses. The recent article in the LA Times, mentioned above, called Purdue out for “knowing” that some patients experience an end-of-dose effect as the12-hour mark approaches.1 Now, if this is true (which it sometimes is), patients would be experiencing pain or perhaps mild opioid withdrawal before the next scheduled dose. This can result in additional immediate release medications (like oxycodone) prescribed to cover that time-span, i.e. breakthrough pain. More medications may affect other risks such as overdose, opioid craving, and the like. So what exactly is all the fuss about? It appears that the LA Times is upset that Purdue is not formally addressing this presumed “lack of efficacy”, or what is commonly known as “end-of dose failure” of a 12-hour dosing interval and isn’t promoting its use at 8-hour intervals. This is because Purdue is a pharmaceutical company and is LEGALLY prohibited from promoting off-label uses.

If a patient is experiencing this lack of benefit at Q12H dosing intervals, a Q8H dosing interval sounds like a plausible option. Logically, it makes sense: prevent return of pain, prevent withdrawal, avoid adding additional medications, and maybe even diminish the risk for diversion. The concern expressed by some, with dosing OxyContin Q8H, is that the patient could potentially experience a higher oxycodone plasma level, therefore increasing the risk for side effects such as a loss of consciousness or a decrease in respirations. There is no evidence to support this.

Off-label use is not an uncommon scenario. For example, fentanyl patches are marketed as Q72H, but may be used for Q48H as indicated in the label3. Tricyclic antidepressants (TCAs) such as amitriptyline for neuropathic pain are commonly used off-label4,5.

Can the pharmaceutical companies that make these drugs legally and openly support off-label uses? No.

Is fentanyl often dosed Q48H? Yes.

Is amitriptyline used for neuropathic pain? Yes.

Can oxycodone ER be usedQ8H? Yes.

Obviously, there are always risks associated with off-label use. There are also risks associated with any medication even when taken as prescribed. It is the responsibility of the medical provider to discuss risks vs. benefits of any treatment plan. The further a medical provider deviates from the intended use, the higher the liability. Many antidepressants and anticonvulsants without a pain indication are routinely used to treat neuropathic pain syndromes. Cancer drugs are frequently used for malignancies for which there is poor evidence. In the grand scheme of things, whether or not Purdue Pharma openly supports or endorses OxyContin Q8H is irrelevant, other than their obligation to follow the law and not promote for off-label use.

n closing, it is noteworthy that newspapers should provide accurate information by honest journalists who do their homework and provide each side of a controversial story. Perhaps the term Newspaper here is an oxymoron too, since the definition of oxymoron is “a combination of words that have opposite or very different meanings”.

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Writing Again

Just a heads up. I will be publishing articles here wherein I will be interviewing people with pain and pain care specialists. I expect to publish 2 monthly.

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The Gifts of Behcet’s Disease.

For the last 4 weeks, I’ve had a net another yet another Behcets’s lesion in my mouth. This one stayed the longest, and is still present though less painfully combustible. As it began to recede I had the utterly stupid, as history should note, idea that I would be able to spend a few weeks without some part of my mouth on fire. Right. Yes, to believe in this is to believe in white bunnies bringing me candy every day.

Just as the one began to slip away, another sprouted its painful self of lower left side of my tongue. This is a strategic location because it causes pain no matter what my mouth does.

This should not be such a surprise as I”ve lived with this for nearly 40 fucking years. If it’s not one lesion in my mouth it’s a lesion elsewhere causing the same or worse pain.

This disease is designed, at least for me, to cause the maximal pain. Not simply physical pain, but the pain of one onslaught upon the next. It waits until I’m almost ready to accept a leison free few days when it detonates a new one. This is designed for maximal demoralization.

Lesions and their attendant pain, sometimes agony, are designed to inflict maximal psychological torture. Just when you think you’ve escaped, the fucker tracks you down before you reach freedom at the gate and pulls you back in. All the while laughing manically in my ear. My ear, so no one else hears the agonizing protest gargling up my throat.

Yes, the life of the chronically ill, the chronically painful existence, is quite frankly, the last laugh of Beelzebub. His chared tongue and split lips laughing up brimstone, brimstone he laves over our writing bodies.

It makes me murderous.

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Village of Impermanence

Village of Impermanence

I have been for some time feeling better. So how come I’m having trouble describing it and believing it? I am ambivalent writing about this or even talking about it as 1) superstition tells me to keep it to myself as telling anyone about this turn of events is a jinx, and 2) I have been locked inside a miserable cur of a body for over a half century and I don’t have much to go on when I say that for some time I’ve been feeling what I now call better. Dictionary: better: of superior quality of excellence.

Now, this turn of affairs has me stumped. Am I saying that I am now experiencing a superior quality and that superior quality is, in this case, excellence? I’m really not sure. I know “excellence” does not do justice to this feeling better business. Superior really does the trick, though.

But I can assure the reader that I’m not anxiously wandering about in a linguistic parlor game. No, it is my mind trying to come to terms with this; over the last summer I have begun to feel that elusive…

WE MUST INTERRUPT THIS COLUMN FOR BREAKING NEWS: WE’RE AFRAID IT REALLY IS LITERALLY BROKEN

Our correspondent is sitting by a window in a coffee shop in Lincoln Park in Chicago where he lives. It is a balmy 0 degree with a moderately heavy snow swirling around his perch in the semi-warm shop. Why might you ask, rightfully, is he I doing this?

Last night he started this blog while lying on his bed with his furry pal, Dylan, lying next to him with his head on our correspondents outstretched leg. He’d just returned home with his son who gave him tickets to see his beloved Chicago Bulls play. It was a hoary January night. Traffic was light coming home but the temperature was 8 degrees south of zero. Not such a bad deal, but the front running Bulls got chased off their own court by the lowly Utah Jazz.

Bad omen?

Bad omens need recognizing which, one hopes, leads to planning, the kind of planning that minimizes, again, hopefully, whatever damage is silently, inexorably swinging around the sun on its menacing parabolic arch headed straight for our unsuspecting, “feeling better,” correspondent.

If, like the characters in the movie Melancholia he knew what was coming, would he have stayed home lounging on his bed? While our correspondent is interested in dystopian futures, he never thought that his previously dystopian life could round the sun aiming lustily for him.

Before describing the mayhem headed towards the north side of Chicago, a return to happier days with which this blog began is in order, at least as far as storytelling goes.

As I was saying at the top of this post, I have been getting, slowly and inexorably better. I can feel some of you smirking even now: Never say things are looking up as the other shoe will always drop, most often with a direct hit to the offending–I’m feeling better–skull. You know this to be true as I’ve not hinted too obliquely at what is to come.

After I fell in the garage of a hotel in late winter ‘13, the night before moving into our new home, I was the happy recipient of three surgeries on my spine and back that delivered me from the the hardware from my implanted spinal cord stimulator and all the bolts, plates and screws from extensive spinal surgery 15 years ago to repair the multiplying disabilities from a long ago broken spine.

Some of you are, no doubt, and blamelessly I’d add, saying to yourselves, “Oh, shit! Nothing good ever comes from spinal surgery.” But who listens to such admonitions before the blade slices?

After the surgery, my new doc, a young man in his mid 30s, who seemed to me to be all ears, cradled a lovely medical intellect along with a nice dollop of courage. Why courage you ask, as might you well? Because this young man thought the dose of OxyContin on which I was relying to keep the panther of pain off my chest and breathing heavily into my cringing visage, was woefully deficient in curbing the pain I had been living with for decades.

By the end of fall ‘13 I was very aware of a happy diminution of the panther prowling in tight circles around my body. The arc of his circles frequently carried him and his hunger out of sight. I could hear his slow breathing in the shadows, but he was, much to my giddy surprise, out of sight.

As my panther remained largely on the periphery of my consciousness, I allowed myself thoughts of how I might widen the arch of my circle. To wit: I started the process of getting my clinical social worker license reinstated here in Illinois. By Christmas I had fulfilled most of the requirements to be able to take the exam. This left me in high hope that I may restart a small practice working only with the chronically ill and those with chronic illnesses.

As I felt better I talked to my team of docs about returning to practice and all said they’d be excited to refer to me as they have so many folks struggling with panthers of their own. I’ve even begun looking at offices downtown where I may rent by the hour. It would be perfect as I’m only an 8 minute walk to the Red Line subway that delivers me to the Loop in 15 minutes.

The most obvious indication of reduced panther activity is seen in my daily walks with Dylan. I have gradually lengthened how long and how far we walk. Just a few days ago before the return to the Siberian Express, Dylan and I walked about 8 miles over two hours!

I think you can imagine how I felt about that and you’d be right. Mostly, I was amazed and excited seeing my body as younger than the seven decades I’m working on. Hope rang like the Cathedral Bells in Paris on Easter Sunday. Yes, I felt as if I’d risen from the dead. And I wasn’t wrong about that.

Of course, you must be wondering how Dylan and I can walk under such harsh weather conditions: snow, subzero temperatures turned murderous by the constant presence of the Hawk flaying in from the frozen lakes of Minnesota and Wisconsin: yes, the return of the Polar Express.

Well, we have a nice little sweater for Dylan as well as his red bandana tied rakishly around his scruffy neck. I have a wonderful leather coat the just covers my butt and is lined with some sort of cold resistant cloth. I also have my Cubs hat, ear muffs, thick gloves and a black mask I wear that completely covers my face when the Hawk comes screaming.. We are both warm.

I’ve been able to go out more and more without my cane and can now stand for nearly a quarter of an hour.

This is all lovely, exciting and a rather exquisite punch to the panther’s solar plexus.

I am lighter, happier, humorous and more committed to things I couldn’t commit to before.

I am now on the board of the National Gun Victims Action Council, working on a justice project through my Unitarian-Universalist Church and working with the Socialist Party USA. I feel that I’ve returned to the world.

You know what’s coming in a way that I, in my exalted state of mind, did not. You’d be right to think that someone from a bit of Irish descent would be, at least partially, aware of the possibility of a looming potato famine. Yes, but in feeling better and better I began to rely, in retrospect, on a none too large helping of denial. And denial, unlike revenge, is a dish best served warm and lusty.

However…cliche aside, history, much to our correspondent’s dismay, does, indeed, repeat itself.

Let’s return to our correspondent who is now lying on his back in the mouth of an alley a block from his new digs in Lincoln Park.

Minutes before he headed to the coffee shop a few blocks from his apartment our correspondent realized quickly that being out in zero weather with the Hawk’s Arctic wings beating frostbite, that he’d never be able to last more than a minute or two without his balaclava ski mask.

Without hesitation he turned around to walk home. The hawk instantly pounced: its icy talons threatened to slice the skin from his face. With his computer bag securely over his shoulder, he held both gloved hands over his face to stop the pain.

Walking gingerly since most buildings didn’t shovel the snow from their sidewalks, he headed home. Looking down for the icy menace, his right leg flew upwards followed closely by the left and he watched his feet fly above his head before falling like dead weight down, ever so down to the ice-slicked sidewalk.

Dazed for a few moments he lay on the ice looking up at the snow pregnant clouds closing in above. With the ice beginning to make itself known through his jeans, he slowly got up, readjusted his computer bag and painfully and angrily walked in the middle of the streets the last 2 blocks home.

After surveying the damage at home, at his insistence, his wife drove him to the coffee shop where he now sits writing this.

*********************

It’s little trials like this that so easily puncture a fledgling hope for continuing good health confined to a body that can be so easily upended and damaged.

Though I was feeling better and more hopeful, my doc suggested I invest in a third surgery on my right shoulder. I told him a few weeks ago that I was going back to the gym, for the first time in a decade, where I would slowly try to rehabilitate the bugger and so turned down his advice.

However, this fall two hours ago was partially cushioned by landing on my right arm. You guessed it. I can barely type due to the pain and know well that I’m going to have to go in for my 16th surgery.

Feeling well and nurturing hope is a fragile enterprise, especially as we know our bodies can and will betray us in blink of a panther’s eye.

Right now I’m a bit numb to the anger frenetically dancing around my head. It’s there in all its hope killing glory, waiting, waiting.

My hope is that writing this will help tame the anger and the panther.

And underneath all of this, especially the two falls on ice in the last 1 ½ years, I’m gazing my age right in the dark of its eyes. Am I falling because I’ve been away from this kind of weather for two decades or am I, because of age and disability, not as balanced as once I was?

**********************

I purposely waited a few weeks before finishing this post. Why? Will that fall in the alley be the setback I imagined? The answer, as we all have come to know in questions regarding our bodies, is yes, to a degree, and no to an equal degree to the dystopian future I feared.

Yes, I now have an increase in pain in my back. But my mood of lightness and humor has not taken the hit it could have. You might be surprised to read that I believe my diminished time in the woods with the panther over the last 5 or 6 months is developing a life of its own. As the panther circled wider away from me, my overall mood lightened. That lightness has carried me through this downturn and, I hope, through the trial of yet another surgery.

But know this: what comes next may be the product of the last 6 months, or the awareness that comes with age, and, as in most things, probably a combination of the two and other factors with which I remain oblivious. I now feel the transience of pain, painlessness, health, of trials, and ultimately me. Of course, I knew this intellectually, but now, for reasons I’ve just stated, I know.

Transience: impermanence; the inevitability of dying.

A strange awakening coming with feeling better…The definition of transience used to piss me off. Not anymore. It’s the guarantor of rhythm, dance, song, connection, pain, loss, love and life.

With transience comes the sweetness of moments.

I’m pleased to have joined the village of Impermanence.

May your arrival here come sans a thud on the ice.

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SIX

SIX

Yes, 6 dead in Kalamazoo, MI. The bullets carried off have a dozen people.

Six of our brothers and sisters, sons and daughters.

Six.

I wonder, is there anything new that can be said about six more dead human beings, humans who came from families, who came from friends.

Six people.

I will not write their names, as predictably, you and I will forget those names, names burned bright in the hearts of loved ones, but a news reel and an editorial for the rest of us. No, I’ll not sully their their names with predictable, stylized grief. No makeshift memorials of flowers and teddy bears.

No. Not this time.

Six.

Is 6 too small a number of gun deaths to get worked up about? Is 6 now a routine number? A number not grand enough to grab our attention, to grab our emotions.

Will 6 wanton deaths create a poignant set of editorials from news outlets? From major papers, the editors of which decide what is and is not important enough to land on our doorstep before the morning coffee has brewed to our perfection?

Who were these six people to tumble into our lives? Who are they to be smeared across my computer screen? What right have they to hijack the news cycle when Donald Trump claims the predominant headlines his march to the Republican nomination with his view of guns hanging out of his back pocket.

Should we, in defense of those six, insist that our candidates join all of us in demanding changes to laws governing the sale and possession of guns?

Are we too afraid to stand up and be counted?

Should corporations who benefit from the production of these instruments of death and destruction be left off the hook of responsibility?

Do we have a moral duty to rise up against the cheap gunsels who cry foul every time the rest of us demand something be done to curb this long running catastrophe?

And how do we hold corporations accountable for the deaths that pile up year upon year?

Should we do business with corporations or businesses that don’t ban guns from their premises? From the premises of other businesses and corporations?

Should we demand all businesses post signs forbidding guns on their premises?

Should we demand that all possession of guns in public places be banned? That concealed and open carry of firearms be banned?

Shall we ignore the carnage caused by guns? How about toy guns for the kids? Do we want them insulated from the horror that guns cause daily?

Six people.

Six individuals with lives and plans for the future.

Dead.

All six dead.

How do we mourn a small group of people who’ve passed into the lore of gun craziness?

Six people loved by those we don’t even know.

Sick.

We are sick and tired. Sick! We’ve seen too much.

Six.

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WHY IS HE CARRYING THAT CANE

 

For over 25 years I have gone almost everywhere with my cocobolo wood cane that my mother gave me to replace the standard issue Walgreen’s cane that had no character that I hastily bought the day before my wife and I were off to Paris. My right knee had swollen badly after a steroid injection that was supposed to dial back the pain so I could walk when in Paris.

If I was going to spend the rest of my life accompanied by a cane, I should, according to my stylish LA mother, at least have one with artistic definition, panache, and “character” that she was convinced would enhance my physical visage even as the Behcet’s disease mindlessly assaulted me with rapacious, nay, vicious glee.

It was immediately apparent that toting my cane around with me in the Loop, on the subway and in airports was a thing of silent questioning and occasional poorly disguised approbation by those who would first look at me, then the cane I was carrying and not using to walk. “What,” the silent appraisal seemed to say, “are you doing with that cane; you’re certainly healthy enough not to need that.”

I hasten to add that I’m more than a little aware of the possibility of projection on my part. It is a possibility that I’ve attended to more than once, the possibility that people who appraise me in this matter are not critical but curious. I’m aware that the old critical “voice” I acquired in my youth might well be the operative motivation in this.

I’m quite aware that, in psychoanalytic parlance, I’m engaged in something known as psychic equivalence: to wit; what I think is equivalent with reality.

This is a regression on my part to a very early way of being in the world while trying to learn the difference between what is in my mind and what is out there beyond me in someone else’s mind, which may be very different than what is in mine. This is a developmental step we all need to make if we are to be able to distinguish our thoughts and feelings from those of others.

This equivalence is a way to externalize the disquieting voice in me that doesn’t yet believe-after all these years-that I really do suffer from grinding pain. In other words, I may be attributing the wheedling voice in me to those who pass me in the streets.

Come with me a quarter of a century into the present day. I am in my mid sixties once again working in Chicago as I did the 25 years ago. There is no mistaking me for a man in his 40s. I am now “elderly” and a cane for a man of my age isn’t surprising.

There is more to this story. For the 1st time in over 20 years I am able to work once again, even if only part-time. I have not had use for a Winter coat since leaving New York in ’03 to spend the next 10 years in the unreal balmy weather in LA and San Francisco.

Back here in the cold climate of Chicago I had to improvise on a long winter coat. Out of the back of our packed front hall closet I retrieved a 35 year old duster still in good condition with it’s length below my knees, flaps and hidden pockets and a black leather collar. With this distinctive coat that is now quite rare but still fashionable, I wear a black leather baseball style cap.

Walking to and from the subway stations with my bag slung over my shoulder, coat and cap topped off with me striding down the sidewalk with my carved wood cane in my right hand that I look rather like a dashing, newly minted senior citizen. I may be getting on in years but I’m still Stylin’ I reply when I can.

When coming and going from work dressed like this I do get my share of “looks” from other denizens of the Loop. I find that other pedestrians openly survey me as they close down on me from the opposite direction. They look first at my face, then coat and hat followed by a sometimes furtive but lingering look at my cane: the one instrument not on me, but held by me in case of need, or for some, a feeble attempt by me to raise concern and pity.

As these circumstances happened more & more I began to notice that after surveying my cane these polite people looked again at my face as if trying to come to some sort of conclusion about me and my motivations in this very brief, fleeting encounter with my rather, I’m told, striking presence. I say striking since a number of young African American men and older women compliment me on my coat &/or my “look.”

But what am I to make of this rather frequent fleeting appraisal of me as I make my way to and from the Red Line, to and from work I can finally do again? I don’t want to leave the impression that these brief encounters only happen in Winter. I get them year round, but admittedly, more often in the cold months, where I must be honest, I am more covered and “incognito” than I and others are during the warmest months.

Living in a large city it’s a common daily occurrence to come across differently abled persons. It seems a human quality to look furtively at the persons who exhibit “diabledness” and to look away before the person who embodies that difference can look back in humor, anger or righteous indignation at being deemed nothing more than a type, an “other” who can, &, most often, should be ignored.

I think that our brothers and sisters who negotiate the world from the sitting position in variously tricked out wheelchairs are the ones who attract the most frequent furtive glances. I think our comrades in the seating position are the easiest for the healthy to somehow look down on if not comprehend; those who glide by on wheels and are given a measure of deference by the among us.

I think that what is connoted is varied. To wit: there but for the grace of god…can they really have wheelchair access whenever they need it…I wonder what forces combined to put them in that chair…what is it like to always have to look up to others when in conversation.

In short, those of us who display our “disabledness” through the contraptions that allow us mobility and some sense of “living in the world” move us unsteadily through that world as societies “other.”

We are needed, not for our individual attributes and consciousness, but for our ability to embody a trope, a meme, an idea that can be accepted within limits or rejected out of hand depending on how much empathy has been inculcated in the observer.

As outliers/others we seem to be societal benchmarks for the dividing line between those upright and able and those “otherwise.” In many ways we become a starting point for the able among us to gauge what it would be to move them into our world, a world which they despise as a world not just otherness, but a world of reduction. A world or body not bargained for nor easily imagined and easily discarded.

When I get that look, the look that begins with my face then bends quickly to the cane in my right hand and back to my face I know a judgement was in hasty production. Certainly a judgement about me, for example: he’s not crippled, what’s he doing with that cane? Or maybe they see me descend the stairs into the subterranean transit system.

A descent for which I do not use my cane. Ubiquitous observers see me take up my waiting position on the platform and see me twirl my cane in my right hand before dropping the rubber tipped end of it to the anonymous platform.

That link between platform and cane that life thrumming through my hand as a 95th Street bound train heaves into view, a leviathan who for just a few moments sings my song, our song whose jagged notes like jagged breath floats above the Leviathan’s staccato wash, a wash that sings to no one, but whose melody is heard only by the chosen few, the few who must stand still to listen long after the behemoth has lurched away and away…after which the hand and arm I lean on, the ones that let me live upright, if only for a time, clasp around my heart, the heart of all differently abled who your gaze can not but linger long enough to form a recognition.

I get it.

I can walk walk most of the time for hours without the need for my cane. I can not stand, for example, at a Loop intersection where I have to stand and wait my turn. I immediately employ my cane onto which I, like others, lean, to reduce the pressure on my spine and the quickly assembled crashing pain.

No one sees my anguished drama at every stop light, on every platform waiting on trains, standing…standing in an ever deeper pool of pain while others watching me, yes watching me as they come to whatever conclusions they can muster from their brief encounter with a stylishly dressed man who surely must be hiding something, right? Why else doesn’t he use that cane all the time?

I refuse to explain myself, to explain why a seemingly robust, well dressed man uses his cane intermittently while looking like an otherwise sturdy elderly man.

In many ways I have encountered the same suspicious “looks” when I displayed my handicapped card on the windshield shield of my car. Once a cop actually followed me into a grocery store to enquire about my disability. The same happens when I carry my cane. There is no end of suspicion however wrongly assumed.

I may not look like the average differently abled person, but looks deceive just as our prejudices deceive.

All I ask, as many of us would be happy to be asked, is that the able bodied ask with humility, with a certain trepidation, a notion that your suspicions might be prejudiced and depraved.

Approach me. Ask in genuine interest, get to know me and more importantly, come to know my cane and its role in the lives of so many, so many in need of support for which they never wanted.

I won’t be offended.  We won’t be offended, we’ll be grateful.

 

 

 

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Gun Grabbing & Paranoid Delusions

GUN GRABBING & PARANOID DELUSIONS

For an exercise in futility, there is nothing quite so worthless as talking with a rabid right wing gunster about any issues related to their fetishized guns and bloodthirsty defense of the Second Amendment to our Constitution.

These gunsels first response to protective gun laws is to obfuscate any rational argument that might be logically offered to make guns and their possession more safe. The gunsels always trot out the canard that gun deaths would be significantly reduced if and when we, as a society, somehow manage to cure all those mentally ill whom the gunsels claim cause mass deaths: Not the gun but the person.

It is not my intention here to fight old battles other than to say that other industrialized nations keep guns out of the hands of people who shouldn’t have them while we do not.

We can not work towards safety for all by engaging the rabid right gunsels. They insist on several lies to back up their deranged intransigence.

To wit: If any law proposed to enhance gun safety, like mandated universal background checks for each gun sale, the far right immediately shrikes in unison: “Slippery Slope, Slippery Slope.” This is simply a canard. No one is working to strip guns from these people. All we want is sane laws to protect all of us. We don’t want to “grab” their guns or overturn the Second Amendment.

The second prominent lie: President Obama and organizations like The National Gun Victims Action Council are not just interested in safety, “No,” they shout enraged,” they want to grab our guns. That’s the bottom line, they want to disarm us.”

These fantasies are, of course, delusional. Neither is true, but to far right gunsels it’s dogma that the president and gun safety groups are out to harm them.

Delusions bring us back to mental health, or ill health among these virulent gunsels. A look at the criteria for Delusional Disorder as illuminated in the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (American Psychiatric Association) might shed light on the apparent delusions of many paranoid gunsels.

“Delusional Disorder;Persecutory Type: This type applies when the central theme of the delusion involves the individual’s belief that s/he is being conspired against, cheated, spied on, followed poisoned or drugged, maliciously maligned, harassed, or obstructed in pursuit of long term goals.”

As gunsel delusions are shared across a subset of our society and that they often group together around this delusion, this fixed idee, is akin to a folie a deux writ large. A folie a deux here is the sharing of a delusion between two closely related people. I say “writ large” as this delusion of gun confiscation is shared by a small boisterous and angry group.

One possible meaning of this can be found in group solidarity. I think that there is a fairly large number of men and women who feel threatened in all kinds of ways: economically, racially, socially, and in other ways that they feel threatened by larger, impersonal forces. Belonging to these far right, angry radical gun groups, even if mostly on the internet gives these “oppressed” people a sense of belonging to a like minded group of people who share their fears and their guns.

Disenfranchised people generally feel powerless against larger forces impinging on them. They feel cast aside and often unimportant to a society that’s left them behind. Belonging to a group that organizes themselves along paranoid lines, in this instance, paranoid ideas of government infringement on them, especially in the guise of President Obama “maligns and harasses them with efforts to control gun violence.” Their overvaluation of the 2nd amendment and their allegiance to it and to fellow gunsels gives them a feeling of importance that doesn’t exist in other areas of their lives. If the president is after you, maligns and harasses you, well, you must be very important.

This allegiance to the Constitution and to fellow gunsels opposed to a rapacious president gives them a notoriety, a visibility for which they pine along with the strength and camaraderie they find nowhere else.

I am not offering a diagnosis as much as a framework, a way of understanding not only the intransigence of these gunsels but as a way to understand that they are outliers. These are not people with whom we can engage in a rational conversation to bring sanity to our gun culture, to decrease the deadly violence of guns. These delusional people will never back off their delusions to join with to work towards making us and, yes, them safer.

Simply put, delusions can’t be engaged, they must be defeated.

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More from the subway

Yesterday I squeezed onto a red line subway train headed for the Loop. At the next station people, healthy looking people got up from the “Designated Seats” for the elderly and disabled and a young woman standing next to me quickly, ignoring me and my cane, sat her self satisfied ass in the seat meant for people like me; you know, the disabled senior citizen? We’re everywhere and we are her future.

She and the young woman seated next to her feigned complete blindness to my presence standing right in front of them. This may not have been my best moment, but I really, and I mean really, wanted to smack their self-satisfied heads together.

Eventually, our train pulled into the 1st station in the Loop, where I always step off the train to walk to my office. The woman sitting right in front of me, the one who so completely ignored the plight of the disabled senior standing directly in front of her made motions indicating she was readying herself to get up and leave the train.

Being the bastard I can sometimes, be I, I feigned that I didn’t notice her and, therefore, didn’t budge an inch even though it was my stop. I stood still as she tried to get up from the disabled’ persons rightful seat. I didn’t budge. I ignored her.

When in exasperation with my studied indifference to her, she said “Excuse me,” I replied with as much saccharine as I could muster: “Oh, now you see me. For the last 10 minutes I didn’t exist. Maybe next time a disable or senior citizen requires the “Designated” seat, you will gather as much empathy as your parents, in their miserable failure, tried to instill in you and you will cheerfully give up your seat.” I turned and walked away from her with just the slightest bit of satisfaction, but knowing, realistically, my words fell on the deaf ears of a cemented, self-involved blockhead.

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