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.
As always, eloquently put, Marc!
ReplyDeleteThanks… Is it possible to be eloquent when using the word "fucktard"?
DeleteSince entering this wierd MS world, I have wondered why MS patients did not do what the HIV patients did and leverage their connections to find real advances toward real benefit. Yes, HIV is still managed rather than cured, but while managing their disease, they live real fulfilling lives. It's been forever since I knew someone with Kaposi's sarcoma. I wish I could say the same about MS and wheel chairs.
ReplyDeleteSo anyway, Bravo! Great rant! Show me how and where to sign up and I'll bring friends.
The organizing and activism that HIV patients did was truly outstanding. HIV patients were facing an existential crisis, and there was already some grassroots organizational structure in place because of the nascent gay rights movement at the time. Also, the entire gay male population was threatened by the disease, so that whole population turned activist. MS isn't as selective in its targets, so you don't get a lot of healthy people willing to pick up a sword and fight the fight.
DeleteUnfortunately, the official MS organizations are far too polite, and wedded to the status quo. They are also ubiquitous, and have become the face of MS, a face that in my opinion is way too benign. Unfortunately, the debilitating nature of MS means that those who are most outraged (presumably, the most disabled) are also those least able to play a public activist role. It's awfully hard to hold a "Million Patient March" when most of the patients can't march. Of course, we could roll, but organizing such massive events would be quite problematic.
Damn it Marc, if I thought it would do a speck of good, I would. I'd go out onto my porch and yell; I'd scream at the top of my lungs, "I'm mad as hell, and I'm not going to take this any more!"
ReplyDeleteUnfortunately, I know as well as you do that it isn't true. As mad as you and I may get, we both know that we will take it, and keep taking it, until the day that we die.
Great rant. Thanks for the Network clip.
We may very well have to keep taking it, but I do believe that the only way for things to change is a patient revolt. As the CCSVI activists have found, it's awfully hard to battle the powers that be. Still, the stakes are high, after all our lives depend on it.
DeleteAs for specifics, that's where I'm a bit lost. I do know that there are doctors out there who are as fed up as the patients they treat, but they are unwilling to upset the apple cart for fear of their careers. Quite the conundrum.
Thanks for opening the window and venting. It is a freeing thing for people whose disease is hell-bent on silencing them. It is an interesting thing to consider: what would happen if we all did this? Especially at the same time. Would someone finally hear? Would it have any greater impact than personal release?
ReplyDeleteI'm sure a coordinated effort would have some impact. But what action to take? Boycott our neurologists? Stop taking big Pharma solutions? Unfortunately, things like this are double-edged sword, as the pharmaceutical products, as flawed as they are, do significantly impact the quality of life for many patients. And for those of us with progressive disease, our numbers are too small to make a dent.
DeleteAll the more reason for rage, I guess…
Sadly, sometimes I think we will continue to take it for as long as we get mad. The truly insidious nature of this disease of mine is the punishment it doles out as emotions flare. One good flare deserves another, eh?
ReplyDeleteI'm with you on the sarcasm as an outlet for anger. Often it seems the tongue and the pen are the two sharpest tools left for the afflicted. For with them can come humor, and from humor comes recognition of the human condition. From that recognition, springs hope eternal. Mayhap that same human condition is what brings forth all of the demons of greed and anger in the first place, but I still find some comfort in its fruits to help balance some of the evils.
"Why worry?
There should be sunshine after rain.
There should be laughter after pain.
These things have always been the same.
So why worry now?"
-Dire Straits (though I may have lyric order wrong)
Yes, strong emotions are a double-edged sword, as stress and MS are a volatile mixture. The frightening thing about the disease, once progressive, is that there might just be more rain after the rain, with little chance for sunshine. Once we start down the slippery slope of ceaseless progression, there is a definite dark at the end of the tunnel. We can choose to take control of our realities and not let this regretful truth make us miserable, but that does nothing to stop the physical decline. It only makes it more bearable…
DeletePlease don't tell me the Tecfidera isn't working :)
ReplyDeleteHaven't started the Tecfidera yet, haven't even made the final decision to take it. I suspect that decision will be made within the next couple of weeks, and my understanding is that the insurance process takes several weeks to work through. I don't think there are too many patients on Tecfidera yet, and those who are already on it are just starting treatment. I've yet to read any patient reports…
DeleteRight on, man!
ReplyDeleteRant on, man!
I'm with you all the way!
ARRRRRRRGH!!!!!!
Seems this post tapped into a feeling common amongst us patients. If only we could collect all of this anger and focus it like a laser at the problems at hand.
DeleteAnger can be an extremely destructive emotion, though. There is a Buddhist saying that says holding onto anger is like grasping a hot coal with the intent of throwing it at somebody later. Chances are that you are the only one who will get burned.
Thank you for the rant...I cried as I read it because I feel the same.
ReplyDeleteSo sorry that you can relate…
DeleteMad as hell! Yup! I used to believe that I didn't get angry because anger is a "secondary" emotion. You know, anger is a response to sadness, helplessness, etc. Sometimes now, though, I am just plain fucking angry. I might also feel sad and helpless as well, but anger MS has turned anger own emotional response--at least for me.
ReplyDeleteAnd about who deserves MS. . . one of the funniest things anyone ever said to me was when I told my father that I had been diagnosed with MS. He said, "That's just not fair! You're the only nice person in the family." A very sweet sentiment and one that makes me laugh a little whenever I think of it.
See, I got so angry that I wrote an incomprehensible sentence. I meant to say, "but MS has turned anger into its own emotional response--at least for me." I guess I will just retreat to my corner and be pissed off for a while. I clearly need a time out.
DeleteWell, anger is a secondary emotion, but that doesn't mean that some anger can't be righteous. And we the stricken certainly have ample reason to express a righteous anger. Left unexpressed, anger can do all kinds of nasty things to a person, as I now know that all of the anger I subjugated in my youth led to massive bouts of free-form anxiety and neuroses that plagued me for most of my life. Strangely enough, getting MS seems to have "cured" me of most of these emotional afflictions. Guess it gave me something tangible to actually worry about…
DeleteA well known neuro once asked a group of MSers at a symposium to raise their hands if they would risk their lives to take an experimental treatment. The treatment had 90% chance for total cure but 10% chance for death. Not many hands were raised. This was in the late 90's. The disability spectrum varied. I think patients are optimistic that a cure is around the corner. It is upsetting that some researchers use the "c" word. I wonder if they realize the gravity of that statement. Dont "talk the talk if you cant walk the walk". Like Morgan Friedman said to Tim Robbins in "The Shawshank Redemption" while serving life in prison............"hope is a dangerous thing, there's no place for hope on the inside." But in the end Robbins escapes and writes"Hope is the best of things....."
ReplyDeleteHell, a 90% chance for a total cure? Where do I sign up? At this point, I might even sign-up if the odds were reversed. As Robert Zimmerman wrote, "when you ain't got nothing, you got nothing to lose"…
DeleteWell, I have very little disability but a ton of fear for the future. I would raise my hand so,high and immediately. Honestly, i think I might raise my hand for a 50/50 proposition. I never express anger about the MS and most people would be shocked that I'd jump at that gamble, but jump I would. Well my version of jumping, anyway.
ReplyDeleteAs much as I despise Big Pharma,, I would recommend those with little disability who are in the relapsing remitting stage of the disease two definitely get on some of the new disease modifying drugs. If you are JC negative, for instance, Tysabri has a very low risk profile and recent numbers show that it cuts relapses by 85% and slows progression by about 40%. With numbers like that, for JC negative patients, it's a no-brainer. Unfortunately, many of us are JC positive, in which case I wouldn't go near the stuff.
DeleteThere are other choices, and Tecfidera looks to be a good drug. Don't be lulled into complacency by a mild disease course. My thinking has been changed by some of the recent research. I think early, aggressive treatment might be the key to staying as well as well can be for as long a time as possible.
Early aggressive ignorance worked well for me for a long time (20 years) but in the long run, I am worse off for not having known what was wrong with me until I had been using a cane for 4 years.
DeleteBravo Marc!
ReplyDeleteGrazi…
DeleteFantastico!
ReplyDeleteWhat's with all of the Italian kudos? Not that I'm picky, I'll take kudos in any language…
DeleteYes, yes, yes. Yet another excellent post. You are almost the freaking MS poet laureate of our generation (right up there with Simon and Garfunkel and many others). I laughed so hard at the universe copping a huge dump, that I nearly split my sides. If not for severe urinary retention caused by freaking incurable, untreatable, primary progressive MS, might have had an accident. Dang, that was funny.
ReplyDeleteWe should have a nice roll in at the lovely NIH and FDA and demand real research for the actual etiology and pathophysiology of the disease. We don't want it allegedly slowed down but eradicated. We bring in far more profit than any other patients except maybe for those who are battling cancer. For those of us who are treatable, we certainly are massive cash cows. Gotta keep our neuros in BMers and Saabs for sure.
Shout it out, I'm mad as hell....blah, blah, blah most likely all people who have bad chronic diseases feel the same way.
Well, and all fairness, the NIH and FDA can't do their jobs without proper funding, and the NIH in particular has been gutted by recent budget cuts. Thus the dominant position Big Pharma has taken in the medical research world. Unfortunately, the FDA often appears to be more interested in protecting the drug companies than the patients who take their products. Big money has corrupted our political system to a frightening degree, and has completely subverted our democracy. One man with $1 billion holds more sway then 1 million of us peons…
DeleteGreat essay, Marc. Feel free to express this anger to us whenever you want. Even your rants are poignant and well-written. I'm pissed off every single day for you and everyone with MS. You all deserve SO much better--from your doctors, researchers, MS Societies and the world in general. And yeah, from the universe. When Jeff gets angry, his neuropathic pain flares up, so he's had to learn how to diffuse....maybe that's why I rant for him. Keep writing and sharing. It's appreciated. love, Joan
ReplyDeleteThanks Joan, and please keep doing what you're doing. Please say hi to Jeff, and big love right back at you…
DeleteAs always, thank you, Marc.
ReplyDeleteI always entertain great hopes.
--Robert Frost
In our honest journey, we must admit life is often difficult and painful. But these facts do not describe all of life, and they do not determine how we respond. The sun rises warm and bright after a cold and dark night. The open, generous smile of a small child reaches into the soft part of us all. To be strong and hardy on this path, we must be truthful about the pain and unfairness in life while holding firmly to a belief in all the generous possibilities.
Surrendering to despair, we trade the uncertainty of options for the certainty of gloom. Then we might say, "At least I'm never disappointed this way." Life isn't filled only with difficulty and pain. It is also filled with people whose dignity and spirit rise above their circumstances. There are situations when great sacrifice or love and wisdom turn a problem into an opportunity and strength. If we look at what has happened in our own lives and in those of others, we have ample reason to hope.
Emily Dickinson said that" hope is the thing with feathers". Woody Allen said that she was wrong, and "the thing with feathers has turned out to be my nephew. I must take him to a specialist in Zürich."
DeleteSorry, all of this talk of hope reminded me of that line, which is in itself a hopeful sign. As you so eloquently say, beauty can often be found in even the ugliest moments, as we saw this week in the heroism and selflessness displayed by those responding to the tragedy in Boston. Certainly, my struggle with this disease has rearranged my priorities, and in a sense made me into a better person. Now that that work is done, though, I'm ready to be cured. Please.
OMG!! I'm sitting in a cafe, eating lunch, and the crapping universe paragraph had me laughing out loud! Way to rant, my friend! I'm at the lighter end of the disability scale, but progressing nonetheless, slowly, insidiously, even though I'm on Tysabri. I can't afford it, let alone any of the other newfangled "wonders" coming out. I'm in that pocket that can't afford them, but don't qualify for aid either. For that, I'm mad as hell, and its really hard not to throw up my hands in disgust and quit taking anything! Thank you, Marc. I'm passing this post onto my family.
ReplyDeleteI'm glad I could make you laugh, Lisa. I think laughter is the best gift of all.
DeleteSorry, though, to hear that you are not doing well on Tysabri, and that the outrageous prices of MS meds has left you in a bind.
As I said in the essay, it's not only the disease that is maddening, but all the crap that comes along with it as well.
Marc, I have been a reader of yours for a while now and this subject hits home for me. What better way to release my anger but to use the "F" word at lest once a day, even when by myself. 40 years with "Type 1 diabetes",13 years with "Celiac Disease" and now going on 6 years with "PPMS" all before my 45th birthday. Now, if I had a dollar for every time I heard the word "cure" I'd be on my way to have my immune system wiped out and rebooted with my own bone marrow. Keep up the great blogging. Your loyal reader from the Cabot Trail, Cape Breton, Nova Scotia Canada
ReplyDeleteYes, throwing around the word "cure" is extremely irresponsible, and I especially find it reprehensible when they use it in conjunction with studies done on mice. In my next life I want to come back as a mouse with MS. It seems that breathing on them cures their form of the disease.
DeleteVery sorry to hear of your potpourri of diseases. Interesting that they are all autoimmune. Is there a history of autoimmune diseases in your family? My mom developed type I diabetes while she was pregnant with me, and I'm told that the children of type I diabetics have a 50% higher chance of developing some autoimmune disease at some point in their lives.
Your openiing line "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." says it all for me. My wife/carer is similarly deluded
ReplyDeleteYes, I'm sure this delusion is shared by many MS spouses. Must be caused by a virus…
DeleteThanks, Marc!! This was just in the nick of time. . .love your blog, you save my life. Maggie Macall
ReplyDeleteWake up, Maggie, I think I have something to say to you. And that something is "thank you, and you're welcome"…
DeleteSorry for the reference to Maggie Mae, which I'm sure you've heard Ad Nauseum him for most of your life…
This speaks to exactly how I feel. Thanks for putting it to words.
ReplyDeleteYou are very welcome…
DeleteThank you for expressing my feelings so well! I've been feeling so down and when I read your words I understood why. Oh and I do think that fucktard is eloquent in this context.
ReplyDeleteThank you for validating the fact that fucktard and eloquent are not mutually exclusive. I'm glad my words gave you some comfort…
DeleteHoly cow, I thought I was the only one who had the shower dread issue! In my Before Life I would jump out of bed, make the bed, shower, dress (suit, stockings, pumps) and be made up within a half an hour. Now I rarely leave the house, I've gained almost 100 lbs. due to medication and immobility, I schlep around in stretch pants and t-shirts and the mere idea of a shower makes me need a Xanax.
ReplyDeleteFuck fuck fuckity fuck. I hate fucking MS. :(
P.S.: Best to Karen. :) xo
Oy vey, the shower thing. I also am amazed at the fact that I used to be able to accomplish showering, grooming, and dressing (including putting on a fucking tie) in 45 minutes or less. As for stretch pants and T-shirts, are you implying that there are any other kinds of clothing? Zippers and buttons are medieval instruments of torture. I never expected the Spanish Inquisition…
DeleteWell, as we all know, nobody expects the Spanish Inquisition. lol
DeleteThey keep telling me I'm depressed and I only assume that there are drugs to take. No I'm just damn mad and I try not to go off on people who mostly treat me right. Yes mad
ReplyDeleteReally, how can we not be mad. Dealing with this disease turns everything upside down. Anger is an energy, though, so we've got to try to channel it in a more positive direction. At least sometimes…
DeleteTo some being mad is too primitive an emotion, frustration just about as bad. Depression is ok we even treat adolescents for it. I agree we just have to harness the energy
DeleteAs I try and explain to the nice people who tell me about all the friends they have with MS, and "you would never know it",there are thousands more who never leave their homes, are imprisoned in nursing facilities, are so incapacitated that the "outside world" never sees or hears of them.
ReplyDeleteThey are the real silent majority that the MS Society never features in their ads, the Annette Funicellos that are seen only right before they die.
I lived it with my son, and your RANT (truth) and his in the Tipping Point (Thegreekfromdetroit.com) are realities hidden and ignored by the media, the general population and the medical world especially Big Pharm. It is seven weeks today since he "took charge" of his destiny with MS, and all I see is sympathy but NO ACTION. When will change come?????? Ever??????
Yes, the public is largely ignorant of the realities of MS. Of course, there are those with mild disease, and hopefully the new therapies will help keep their disease mild. But there is absolutely nothing out there for people with progressive disease, and they are the hardest hit. Yet this population is hardly ever talked about outside of medical conferences. Much easier to concentrate on the MSer's who climb mountains and run marathons…
DeleteWhen will change come? As long as the medical industrial complex is left in place, change will be incremental at best, coming in dribs and drabs, so as not to disrupt the bottom line. And that's the bottom line…
As someone who has always had what some might call a potty mouth,yes, Marc, I do believe you can use 'fucktard' eloquently! I have been reading your blog since shortly after I was diagnosed.(RRMS in 2009. PRMS in 2011.) You have provided me with alot of information,insights...and comfort.
ReplyDeleteYou have a way of expressing yourself that is a joy to read, though I wish you weren't afflicted with the shit which provides your fodder! But then you wouldn't have this blog and I never would've found it/you! But if a cure came for us tomorrow, I would gladly let you go...no offense, you understand!
Believe me, no offense taken. I wish all who read this blog would someday soon have no reason to ever look at it again, and that I'd have no reason to write it. Unfortunately, that doesn't seem likely, but it's very gratifying to know that these words I scribble on the Internet are of some help to my fellow travelers trying to muddle through.
DeleteIt's good to be a potty mouth. Why limit your vocabulary?
I'm left with the same feeling I have each time I read one of your posts - its a mix of sadness for what you face and gratefulness that you are able to capture what you feel and roll it into words in a way I cannot. Reading here is therapeutic (including the comment section and its humor). Thanks Marc.
ReplyDeleteBelieve me, writing these posts is therapeutic. And the fact that anybody at all reads them is a source of constant amazement. Back in my healthy days, I always took my knack for writing for granted. In retrospect, probably a big mistake, but going back is not an option. Rats!
DeleteI know Marcus, my boyfriend who has MS, gets very angry. He is an amazing guy and he gets explosively angry at times because of it. It's okay to be angry, no one should have to live with MS. I'm a new follower. :)
ReplyDeleteHi, and thank you for becoming a new follower. I kind of hate using the term "follower" for people who read the blog, I think something more in the spirit of "companion" might be more accurate. Seems that most people with followers eventually lead them off of cliffs, but have no fear, I have no intention of playing the Pied Piper. If anything, I might lead you to the offices of the FDA, where we can pelt various officials with rocks and garbage. Send my best to Marcus…
DeleteLet it all out Mark. After five years in a chair and reading between the lines I feel a kindred spirit. Thanks for vocalising what I never but should have said myself. Steve
ReplyDeletePeople often ask how I'm doing. Because I'm not a complainer (and they can't help me anyway), I say I'm fine. But with your permission I will print off copies of this blog to hand out because you say it, as always, exactly like it is.
DeleteJohnboy, you are more than welcome, vocalizing the frustration does help to take the edge off.
DeleteAnonymous, please feel free to print off as many copies as you need. I think we all tend to downplay our true feelings about dealing with this beast, as we innately sense that most people really don't want to know the reality of our situations. But occasionally they should know, perhaps not the full dose of ugliness, but at least a hint of the crap we deal with internally as we put on a brave/happy face with the outside world…
"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 a 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."
ReplyDeleteWhy did I get stuck with sudden-onset complete T4-level paraplegia at age 23, 29 years ago? No reason? Random, statistical dumb "luck." The universe is as indifferent to our suffering as it is to our joys. The universe owes us nothing, it does not even know its own existence let alone us tiny carbon clusters on planet Earth. Big Pharma, on the other hand, can go fuck itself.
Very well said, Stephen. I often remind myself that in the grand scheme of things I'm about as important as a pimple on a flea's ass, and that in 100 years I'll be a faint memory, at best. Helps not to take yourself too seriously…
DeleteIm mad as all hell . . .. to the doctor who told me "I dont want you as a patient anymore because there is no money in it for me.I get paid the same ammount treating an ear infection as i do a complicated illness like MS " - FUCK YOU!
ReplyDeleteTo the ignorant friends and acquaintances who say "It could be worse, Smile!" as I stand before them with my cane and eyepatch - FUCK YOU TOO!
The anger brews inside of me like a quietly percolating coffee pot.Love the way you articulate exactly hoow fucking angry I am!
Nina - Australia
Nina, that Dr. needs to be strung up by his balls. I'm assuming the physician in question is a male, because I doubt a woman would be so heartless.
DeleteIt is sometimes a tremendous exercise in self-control to not do physical harm to those who attempt to ply us with platitudes. They may mean well, but really, just count your lucky stars and be quiet. Yes, it could be worse, but this is pretty fucking bad.
Merrily we roll along…
Yes . . .a male most definitely.I complained about him to the Practice Manager and the MS Society.They contacted him and his practice has agreed to have an MS nurse visit for an education session. Small victories.
DeleteI am still mad as hell! I am now in hospital for a five day steroid run.My legs just aren't working and the eyes are dimming.What has soothed my annoyance at this is the fact a man in his thirties has come onto the ward.He attempted suicide after a major progression in his MS disease.Poor bastard. It brought tears to my eyes to hear/see him.
On a brighter note, I have just bought a Trionic Veloped walker from Swedan . . .a walker built to use not the cheap crap you see in stores.It cost me a grand but if it helps . . .
Nina - Australia
Brilliant blog. Brilliant post. Brilliant clip. In that order.
ReplyDeleteYour entries are thought-provoking and informative and are a joy to read, even when heart-breaking. Luckily I was near a loo, after laughing so much at the caregiver/prince and sloppy dump bits.
Anger is, I think, a healthy initial emotion in when a big slap in the face like MS alerts you to the fact that - despite your unconscious arrogance - you actually have little control over your life. Often no control at all. Channelling the emotion of anger into working out what you can do to improve the quality of your new life is probably rational, but I suspect is less easy to do in practice. Watching the subtle become obvious and freedoms translated into limitations is infuriating, frustrating and sad. Acceptance, for me, is going to be bloody hard work. Reading (and rereading) your entries will help. Thanks.
Thanks for your kind words. Yes, the disease and all that goes with it can be infuriating. Reaching the place of acceptance, though, is difficult, because the progressive nature of the disease means that the deficits you need to accept are a constantly moving target. Of course, this is all the more difficult in cases where the disease progresses fairly rapidly. It's difficult to accept the loss of my right side when my left side seems to be intent on following suit. Still, there is peace to be found within, although sometimes one must dig with much effort to find it…
DeleteDude, you're too much!!!!! Can I get a side or rear mount view? Would love to see the faces of your fellow new yorkers as you zip by!
ReplyDeleteAs a fellow MS sufferers, carer your words ring so true as to what the future holds. years whiz by and nothing has really changed
ReplyDeletesince being diagnosed and the gradual slide into complete patient care. One day we will all go to the Window and shout long and loud.