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Anger Mismanagement

Anger Mismanagement

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 b!%h (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 a$$h0!es 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 f%#(%#@. 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 f%$k 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 f%$($*g 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 damned 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 f$*#&g 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.

This article was originally published on Marc’s website on 04/17/13 and is being featured on MultipleSclerosis.net with his permission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Marc Stecker-Wheelchair Kamikaze author
    5 years ago

    Thank you for all of the comments, folks. I only wish that there weren’t so many of us who understand the sentiments expressed in my essay. I guess what they say is true, “you have to get it to get it”. The media tends to paint such a rosy picture of MS, highlighting MSers who climb mountains or run marathons, that it sometimes seems as if they are delusional. We have so much to be angry about, and make no mistake, it is a righteous anger! I wish I had some magic words of inspiration, but all I can say is that there is reason for hope in much of the recent research, and all we can do is try to make the best of every day. Easier said than done, I know, but if you focus on right now, and try to avoid thoughts of the past or the future, there is some contentment to be found. Hang in there, folks, and keep fighting the good fight…

  • alchemie
    5 years ago

    Yep. You gotta have it, to understand it. For realz. Especially my employer. Don’t get me wrong, I love my “supervisor” too death but I feel that a lot of times, she just doesn’t get it. Same with my husband. Have you ever been told, “stop using your illness as an excuse” ?? Ugh. Its frustrating!!!

  • Sue
    5 years ago

    My brother died of m s 30 years ago. They told me it would have a cure within 10 years. Well I’ve been diagnosed for 15 years and none of the treatments have helped. I have been poking myself to slow the progression. No way to know, but 6 years ago I was working full time. Now I have a power chair and travel with a commode.
    I’m sick of everyone saying how great I look.(I don’t.). Some one carrying fluffy dog bent down to me and told me I could pet it. Not to be afraid. Do I look that pathetic? Guess so.
    I’m mad as hell!

  • mamak1118
    5 years ago

    I’ve said it before, and I’ll say it again. Write a book. Please. I can’t wait to read it.

  • Chris
    5 years ago

    Very well written. I feel the same way. It took almost 20 years to get my diagnosis and I feel like I would be better off not knowing. I’m very angry with this disease. I’m tired of all of it, most of all I’m tired of the lack of everything. The sleepless nights,the pain and spasms, head fog, memory loss, confused. All of it. Thanks for your blog. It helps to know none of us are alone.

  • Pam
    5 years ago

    wow, I feel somewhat better for having read this! I,too, am tired of this hand of fate..i also am tired of explaining to people why I cant do something.. only to have them totally ignore my answers! I want to say “I’m ok” and have it be true! thanks Marc! you said it well:)

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