Showing posts with label emotional distress. Show all posts
Showing posts with label emotional distress. Show all posts

Tuesday, July 16, 2013

An Ugly Profile

Scary, Hideous, Negative Me!

As every man, woman and child over the age of six living in the United States must be all too aware, the latest courtroom drama to grip the nation has been the trial of George Zimmerman, which came to its conclusion this past weekend. Unlike many of our previous “trials of the century”, which usually feature lurid sexual misconduct, child murder, or the involvement of a celebrity, the Zimmerman trial focused attention on some of the most troubling fissures that threaten to fracture American society, including racial bias, the prevalence of handguns, and our well-earned paranoia regarding violent crime.

A prominent issue in the Zimmerman case was profiling, specifically racial profiling. But profiling can take many forms, and as a disabled person this aspect really struck home. More on this a bit later, but for the sake of international readers who may not know the specifics of the case, please allow me to provide a quick summary.

In February 2012, black teenager Trayvon Martin was walking back to his father’s fiancĂ©’s townhouse at about 7 PM in the evening, after a trip to a nearby convenience store. The Florida community he was walking through had recently been the scene of several burglaries and home invasions. A white resident of the community, George Zimmerman, a volunteer in the neighborhood’s community watch program, saw Martin walking in the dark through a light drizzle. Mr. Zimmerman, who spotted Martin from his car, thought the recently turned 17-year-old looked suspicious and called local police dispatchers, who told him police were on their way and advised him not to follow Martin on foot, advice which Mr. Zimmerman, who was armed with a concealed handgun, ignored.

After following Martin for several minutes, an altercation broke out between the two subjects, during which Mr. Zimmerman suffered a broken nose and abrasions on the back of his head. According to most accounts of the struggle, including Mr. Zimmerman’s, Martin wound up straddling Zimmerman on the ground and was getting the better of the fight. Zimmerman said that at this point Martin saw the gun holstered on Zimmerman’s hip, and told Zimmerman that he was going to kill him. Zimmerman then unholstered his weapon and shot Martin at point-blank range through the heart. Trayvon Martin died within minutes.

Initially, local police declined to arrest George Zimmerman, saying that his actions were justified on the grounds of self-defense. After the case reached public attention and generated a national outcry, Zimmerman was arrested and charged with second-degree murder. After a trial that lasted approximately 3 weeks, he was found not guilty, a verdict that has ignited heated debate and public protests throughout the nation.

Naturally, I have strong opinions about the Zimmerman case, but as I’ve largely tried to keep politics out of this blog, I’ll refrain from airing my opinions here. Instead, as I mentioned previously, I’d like to use this tragic incident as a catalyst to discuss the issue of profiling, the practice of making assumptions about a person’s character, intelligence, or intentions based solely on their appearance. Perhaps the only thing that seems certain about this case is that Zimmerman profiled Martin, assuming he was “up to no good” based solely on the youth’s appearance. Tragically, it turned out those assumptions were wrong, and ultimately resulted in the death of a 17-year-old who was simply in the wrong place at the wrong time. Or, more correctly, in the right place at the wrong time.

Why discuss this on a blog devoted to issues associated with multiple sclerosis and disability? People with MS and other disabling illnesses who show the physical effects of their disease often find themselves the subjects of profiling, whether they walk unsteadily, use canes or walkers, or are reliant on wheelchairs. Assumptions are often made by members of the general public based solely on the appearance of the afflicted, and those assumptions can often multiply the pain and suffering caused by the disease itself.

There has long been stigma attached to physical disability; the severity of this stigma varies from culture to culture but certainly persists to this day even in more enlightened societies. I know many MSers with relatively mild disease who struggle mightily to keep their illness a secret in the workplace, for fear that knowledge of their ailment might derail their careers or even get them fired. Patients with more apparent manifestations of the MS, such as balance and gait issues, have found themselves accused of alcoholism or illicit drug use. Those of us who find ourselves in wheelchairs often also find ourselves ignored by the population at large, subject to ignorant or condescending comments, and sometimes even treated as complete imbeciles. Folks whose disease affects their speech are often automatically assumed to be suffering from mental retardation, the notion that a perfectly fine mind may be hidden behind their inability to enunciate never even occurring to many in the healthy population.

How can I be so sure of all of this? The answer is simple, and embarrassing. Back in my healthy days I was sometimes guilty of just such profiling, unconsciously making assumptions about the disabled based on preconceived notions that had no basis in reality. I clearly remember seething at the wheelchair reliant person who had the audacity to hold up my commute to work while the driver of the public bus I was on took the time to operate the vehicle’s wheelchair lift. How dare they travel during rush hour, didn’t they know that normal people need to get to work! Looking back, I cringe at the memory of my sometimes dumbing down my speech in the presence of people with physical disabilities, as if somebody possessed with faulty limbs was also automatically possessed with a deficient brain. Turns out the one with the deficient brain was me.

Even now, when I’m all too well versed in the trials and tribulations of the disabled, I sometimes find myself falling victim to my own subconscious preconceptions. A few years back I met a man who was active on one of the online MS forums in which I participate. In our written give-and-take on the Internet, I knew him to have a keen intellect – astute, sharp, and witty. When I finally met him in person at a large MS symposium I could barely disguise my shock when I found he could barely get a word out, his speech halting and slurred. Despite the fact that I knew that this man had a fine mind, I automatically found myself simplifying my vocabulary and talking in a louder voice, so strong and ingrained were my mistaken inclinations. I’m ashamed to admit that I was so disquieted by the situation that I cut our interaction short, behaving in a way I regret to this day.

George Zimmerman’s profiling of Trayvon Martin ultimately resulted in an innocent teenage boy’s death, an outcome that all can agree was tragic, whether or not they believe the jury’s verdict to be just. Though the profiling experienced by the sick and disabled isn’t likely to result in physical death, the injuries inflicted to sense of self and ego can at times seem more hurtful than a physical blow. The emotional maelstrom experienced by patients dealing with chronic disabling diseases is and of itself a difficult storm to weather, and the added indignities that are sometimes heaped upon them by an indifferent and ignorant public can multiply the emotional distress of such illnesses exponentially.

Unfortunately, there are no easy answers when it comes to eradicating the problem of profiling, whether that profiling is based on race, gender, religion, or physical condition. As my own experiences illustrate, perhaps the first action we should take to eliminate the poisonous practice of profiling is to look within. An open mind and an open heart are tremendous benefits not only to the person who possesses them, but to all within their sphere of influence as well.

Trayvon Martin, RIP.

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Wednesday, April 17, 2013

Anger Mismanagement

Angry Talk (Comic Style)
(Please note, if you receive Wheelchair Kamikaze via email, the following essay contains a video clip which can only be viewed on the WK website (click here). Unfortunately, video clips cannot be embedded in the email version of these essays.)

My wife attends a monthly caregiver support group, though I can’t imagine why, since I’m such a prince and always a tremendous pleasure to be around. Be that as it may, Karen tells me that many of the other caregivers in the group talk about the tremendous amount of anger expressed by their MS stricken partners, something that came as a surprise to her, since I’m generally not a very angry person. I’ve always been slow to anger, but if anything could get me angry, having to deal with MS and all of attendant crap that comes along with it should do the trick. So, this got me thinking, am I really not angry in the face of this flying shit storm, or is my anger manifesting as something else?

After literally decades of psychotherapy (my enshrinement in the psychotherapy patient Hall of Fame is a cinch), I’ve attained a fair bit of self-knowledge and awareness, and I know that I’m not comfortable expressing or even acknowledging anger. Though I can at times be a sarcastic son of a bitch (and what is sarcasm but anger buffered by humor), I’ve always been harder on myself than anybody else. Not that I’ve ever been some milquetoast wimp who wouldn’t stand up for himself, but I’ve rarely done so loudly, with nostrils flaring, even when I probably should have – though I must admit I have had my moments. In my personal and professional life I’ve encountered my share of jackass bullies who are the black to my white, screaming, shouting, and belittling their way through existence, but I’ve always filed these folks away in a mental folder marked “asshole”, and chosen, as much as possible, to simply ignore them. I clearly have a distaste for outward displays of anger in both myself and others, and I wonder if this aversion has led me to avoid anger to the point where I sometimes no longer recognize the emotion in myself, even when it might be the most appropriate response.

Certainly, being hit with a chronically creeping paralysis that forces you to watch yourself disappear by inches is plenty of reason to get a mightily ticked off, even if there isn’t anybody or anything on which to focus such wrath other than the universe at large. I mean, WTF, there are serial rapists, pedophiles, and mass murderers walking around healthy as horses, and I get stuck with this crap? I’m fully aware that we’ve all done things that would make our mothers blanch to have borne us, but there is plenty of human detritus out there much more deserving of paralysis, spasticity, and all of the other pleasures of this freaking disease than I.

Luck of the draw I tell myself, you simply got dealt a bad hand, but sometimes it’s pretty damned hard not to feel singled out, to feel like the universe ate some bad Mexican food and then decided to cop a squat, take aim, and let rip a big sloppy dump right on top of you. For whatever reason, almost every MSer I personally know seems to be a pretty good egg, as if the multiple sclerosis bug only bites the butts of nice people. Who knows, maybe some of my new friends were flaming assholes before getting struck with MS, and the disease itself is so traumatizing and humbling that it can take the edge off of even the biggest fucktard. I’m pretty good judge of character, though, and when it comes to personalities I’ve learned that it’s awfully hard to polish a turd.

Hey, wait a minute, what’s this I’m starting to feel? By gosh, could it be… ANGER?! Well, why the fuck not, it’s my blog and I’ll rant if I want to, and I invite anybody reading this to rant along with me…

Not only am I sick, but I’m sick of being sick. I’m sick of dragging around a useless right side as if it were a carcass, even while my left side continues to weaken. I’m sick of relying on the kindness of others to cut my food, zipper my jacket, and button my pants. I’m sick of the prospect of taking a shower being as ominous as the prospect of taking a trip to the gallows. I'm sick of the fucking wheelchair. I’m sick of only being able to sleep in two-hour spurts because whatever position I’m finally able to fall asleep in invariably becomes so uncomfortable that it interrupts my dreams. I’m sick of muscle spasms that make my limbs shudder and shake as if possessed by demons. I’m sick of always being so goddamned fatigued that calling what I feel “fatigue” is like calling the Queen Mary a dinghy. I’m sick of the meds and I’m sick of the lack of meds. I’m sick of having to be brave, I’m sick of always seeking the peace within, and I’m sick of not having the freedom to let my mind wander, because it could very well wander into a real-life horror story too demented to be conjured up even by Edgar Allen Poe. I’m sick of watching my dwindling abilities turn into disabilities, of looking on helplessly as my world gets smaller, of watching the walls creep in. So much for my being an inspiration, I guess.

Not only is the disease itself as much fun as genital mutilation, but the universe it plunges you into isn’t exactly Candyland, either. From incompetent and uncaring healthcare professionals, to moneygrubbing pharmaceutical companies, to the unadulterated evil that is the health insurance industry, the hostile landscape a sick person must navigate is filled with enough pitfalls and landmines to make the sanest among us stark raving mad.

One might think that suffering from a chronic illness would confer some kind of cosmic Get Out Of Jail Free card, but no dice. I am extremely lucky in that I truly like my neurologist and his office staff, but some of the other doctors and their assistants that I’ve met in my long ongoing quest to get a definitive diagnosis call into question the notion that possessing a beating heart is required to sustain life. I’m quite sure some of the insurance reps I’ve engaged in verbal battle with were something other than human, instead quite likely undead ghouls straight off of the set of The Walking Dead, whose deepest desire was to somehow reach through the phone and eat my brain, or what’s left of it. And the pharmaceutical companies, well, aside from bribing doctors, falsifying research, marketing drugs and devices that they know are dangerous, and coming up with cures for absolutely nothing, they are doing a bang up job. Huzzah to them.

Before my diagnosis I was as taken in as anybody by the image of the gleaming whizbang super high-tech modern medicine machine. According to all the PR, it seemed like miracles were being performed daily. Once inside the belly of the beast, though, the picture changes dramatically. Sure, modern medicine has tamed a handful of terrible maladies, but far more have it completely befuddled, although those who populate its gleaming halls would never admit to such. When I was diagnosed 10 years ago I was told that the cure for MS would be had within 10 years, and guess what? People who are being diagnosed today are being told exactly the same thing. It’s awfully hard to cure a disease when nobody is actually looking for the cure, and the sad truth is that very little research is being done to look for the fucking cure. Why? Because MS, and many diseases like it, have become cash cows, industries unto themselves, generating billions and billions of dollars and employing thousands and thousands of people.

Due to expanding budget deficits and the notion that government can do no good, the bulk of medical research has been handed over to the pharmaceutical companies, which are almost all publicly traded for-profit entities whose primary concern, by law, is their bottom line. Curing sick people would turn them into healthy people, and healthy people don’t buy drugs. Keeping sick people alive and reliant on exorbitantly priced pharmaceuticals is the ticket to endless profits. So we’ve evolved a twisted system in which patients are seen first as consumers, flocks of geese laying golden eggs just waiting to be plucked. And fucked, but not in the good way.

I apologize, dear readers, for the dour nature of this post, which I realize has turned into a diatribe of diabolical proportions. But you know what? It feels good to let loose all the trials, tribulations, and frustrations that I know we the afflicted share and deal with on a minute to minute basis. Indeed, there is a time to every season, and a time for every purpose under heaven. I decree that right now is my time to raise up a huge middle finger to everything that has transpired these last 15 years since my first symptoms started cropping up, lost years that I will never get back even if I were to wake up miraculously cured tomorrow, which we all know simply is not going to happen. This disease smashes dreams, breaks hearts, and does its best to trample hope. But kindle hope we must, as hope is the only weapon we can effectively deploy against all of the insults described above, and without which we are truly lost. Still, it’s possible to harbor hope but be fully cognizant of the realities of the situation, realities that perhaps will only change when we the patients rise as one with a righteous fury to demand a different way of doing things.

For inspiration, I leave you with the following clip from one of my favorite movies, and I urge everyone to follow the on-screen action and turn this viewing into a participatory event. I promise, it’ll feel good, like primal scream therapy. Here’s Peter Finch, as Howard Beale, the mad prophet of the airwaves, in the 1976 movie “Network”. Mr. Finch won a posthumous Oscar for his performance in the film, and it’s frightening how little has changed in the nearly 40 years since it first hit the silver screen…



RIP Annette Funicello and the victims in Boston.

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