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MULTIPLE SCLEROSIS SUCKS!

MULTIPLE SCLEROSIS SUCKS!

Allow me to apologize in advance for the contents of this essay. Quite simply, I’m fed up with multiple sclerosis and everything that has to do with multiple sclerosis. Those expecting to find any form of eloquence, wisdom, inspiration, or other redeeming qualities in these words will probably be sorely disappointed. Like a bulimic who just polished off a giant platter of lasagna, I’m feeling the need to purge and I have a hunch the results won’t be pretty. What follows promises to be more of a free-form rant than well-constructed discourse. I can’t guarantee any kind of narrative flow or grammatical cohesion, much less literary flourish or clever turn of phrase. No, instead I’m just gonna let it rip, an unadulterated regurgitation of everything about MS that’s been stuck in my craw these last few months. This may not be for the faint of heart, as I just might wander into some very uncomfortable territory. Okay, you’ve been warned; now’s the time to either buckle up or head for the exits.

MULTIPLE SCLEROSIS SUCKS!!! I hate this fracking disease. I hate what it’s doing to me, I hate what it’s doing to my MS friends, I hate what it’s doing to those who love or even barely put up with me. I hate the creeping paralysis, I hate the spasticity, I hate the pain, I hate the spasms, and I hate the unrelenting, soul crushing march of constant progression. I hate the slow, systematic dismantling of the life I used to know, I hate the steady erosion of everything I once thought of as “normal”, I hate the constant flow of indignities large and small handed out by the disease. I hate the word “multiple”, and I hate the word “sclerosis”.

I’m sick of being sick, and I’m sick of being sick of being sick. I’m tired of being tired, and I’m tired of being tired of being tired. I’m aghast at the fact that the balance between body parts that work and body parts that don’t work is starting to tip heavily in the favor of “don’t work”, like a sinking ship rearing up as it gets ready to make its fateful plunge. The list of things I can’t do are starting to outnumber the list of things I can do, despite the constant physical and mental adjustments and gyrations that I make trying to contort my life to fit within the ever constricting boundaries imposed by this hellacious disease. I find it impossible to ever get used to having this curse; at least three times a day I find myself shocked at my predicament, barely able to fathom that this is actually my life.

As of this writing I can barely dress myself, can’t cut my own food, can take but one or two hideously painful and treacherous steps. Horrifyingly, these steps are accompanied by a gruesome symphony of crunching and cracking sounds as my hip bones perpetually deteriorate, gut wrenching noises so loud that they can be heard across a large room, all courtesy a tortuously painful degenerative bone condition that has attacked my hips and shoulders that was brought on by IV steroids originally intended to help curb this monster. I’m only able to sleep in one and a half or two-hour spurts because of the intense pain in my hips and shoulders, and on most days I barely have the stamina to spend more than three or four hours at a time out of bed. My right arm is emaciated and most often bent at the elbow due to spasticity, my right leg as weak as a noodle. The left side that I’ve come so much to depend on is well on its way to failing, the thought of which bores a hole through my very being. And then there are the “bowel and bladder issues” that I share with so many other MSers. Such polite terminology for the fact that we can barely crap and can’t stop peeing. And despite this litany of dysfunction, I know that I’m still one of the lucky ones, as so many with this scourge are in far worse shape than I.

I’m fed up with well-meaning folks uttering some of the stupidest things I’ve ever heard in an attempt to make themselves and me feel better. Upon learning of just why it is that the right side of my body is a shriveled mess and my ass is stuck in a wheelchair, one woman cheerily informed me that her best friend’s husband is completely bedridden due to progressive multiple sclerosis, but that he is just about the happiest person she knows. I just sat there smiling and nodding my head, while on the inside wishing that a rogue chimpanzee would suddenly materialize and eat her face. Her best friend’s bedridden husband is just about the happiest person she knows? A man is likely totally paralyzed, completely incontinent, and probably has to use a feeding tube for nourishment? And this poor soul is just about the happiest person she knows? Who are the rest of her friends, professional mourners? Remind me never to accept an invitation to a dinner party at her place.

I’m angry that the most insidious and destructive form of the disease, progressive multiple sclerosis, the form I suffer from, is kept hidden from public view like a Victorian era mentally deficient child kept locked in an attic. Courtesy the mainstream media and the multiple sclerosis societies, the public never sees the ravaged bodies and mangled lives of people hit hardest by the disease. Instead, the face of MS belongs to celebrities and those patients left mostly unscathed by the illness. There’s even a TV commercial for an MS drug, Tecfidera, that portrays the disease as quite literally something of a carnival. Funny how those celebrities with MS whose disease takes a turn for the worse fall from public view, isn’t it? Where are you, Terry Garr?

Progressive multiple sclerosis has made me envious and prone to jealousy, not only of healthy people but even of people with other illnesses. I’ll confess that this even includes people suffering from the relapsing remitting form of the disease, even though I know that RRMS can be its own particular form of hell and can eventually lead to progressive MS. But just the idea of a remission, a break from the never ending grind of watching myself slowly disappear seems absolutely heavenly. At this point I think I’d give up all the remaining years of my life for just a week of normalcy. Hell, maybe even just an hour. Sixty minutes to go for a walk, to run and jump and dance and button my shirt and tie my shoe and hug my wife and – gasp – drive a car! Yeah, sign me up. That would be one heck of an hour.

Along those same lines, here’s an even more disturbing confession. In ruminating through mental lists of diseases that might be worse than progressive MS (leprosy, for instance), I sometimes find myself thinking that cancer would be preferable to this creeping paralysis. I know, heresy. But as undeniably horrible as is cancer, at least it’s a disease that ultimately and in relatively short order comes to some sort of conclusion. Yes, I’m fully aware that the disease puts its victims through living hell, and that cancer treatments often seem worse than the disease itself, but at least there are treatments. And at the end of those treatments patients either beat the disease and become survivors who can then begin to reassemble the shards of their life, or they die. Progressive MS doesn’t have the good manners to finish off its victims, instead leaving its least fortunate sufferers consigned to live out their years as fully conscious brains trapped inside prisons of completely useless flesh and bone. The stuff of horror movies, a fate far worse than death as far as I’m concerned. Progressive MS has exorcised me of any fear of death. In fact, given the aforementioned almost unthinkable but quite possible outcome, on many days I’m far more afraid of living than dying.

I’m aware that to many the above words may seem shocking and wrongheaded, but there’s a reason that MS was second only to cancer among the ills suffered by the patients that the infamous Dr. Kevorkian helped end their lives. Okay, hell, now that I’ve stuck my toe into these murky waters I might as well dive all the way in and speak about what goes largely unspoken, at least to those outside of the progressive MS club. Any number of studies suggest that suicide be listed among the consequences of multiple sclerosis, since so many late stage MSers decide to take matters into their own hands. In my many conversations with other people with progressive MS, I’ve found that most have formulated some sort of escape plan, some in only vague terms but others down to the last detail.

Anybody who would condemn folks for having such thoughts need to keenly consider the gaping abyss people with advancing progressive MS stare into on a daily basis as their thus far untreatable disease drags them ever forward towards the dark at the end of the tunnel. The relief expressed at finally being able to give voice to such taboo thoughts is just about universal among those I’ve communicated with, and is cathartic in its own right. Almost never shared with outsiders, most of the people who have related their thoughts and plans with me find them not self-defeating but rather self-empowering, bracing them to suck it up and fight on secure in the knowledge that if the fight becomes just too brutal and the climb to steep they’ve given themselves permission to call it a life. And in that there is no shame.

Let me assure all concerned that I’m not suicidal. I’m too damned angry to be suicidal. I’ve so far taken all of the wallops that this disease has meted out and found ways to fight back, and though I’m afraid I’ve not managed to land many blows on my disease itself, I take comfort in the knowledge that I may have in some tiny way helped a few of my fellow travelers on this torturous path to better navigate it by sharing the load even as I unburden myself on these pages. One of my oldest friends long ago described me as the most optimistic pessimist he’d ever met. I guess it’s this odd emotional mix that helps keep me going, half expecting that this hair-raising downward trajectory that has me in its grip will ultimately turn out to be a ski jump, and in the end the momentum gathered during this freefall will be transformed into escape velocity, allowing me to soar higher than I ever imagined.

Yeah, wishful thinking perhaps, but on the day of my diagnosis I vowed that if this disease was going to bring me down I was going to go down with all guns blazing, fists bloodied and mouth spewing venom. And should this descent turn out not to be the launchpad of my fantasies, if I ever do decide to pull the ripcord, let that act not be viewed as defeat but rather a final kick to the nuts of the monster. Stay strong, my friends; together we may not beat this horror, but we’ll damn well keep on trying.

This article was originally published on Marc’s website on 02/10/16 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

  • Lisa M
    3 years ago

    Marc

    Amazing writing…As I read it, I felt like you were speaking my thoughts for me, Your words had me laughing and saying, “EXACTLY” and minutes later tears rolling down my face. Thanks for saying the things I think and feel but can not put into words that make sense.

    Lisa

  • alchemie
    3 years ago

    It does and zombies still don’t want to eat my brain 🙂

  • RevTammieHartsock
    3 years ago

    I too have & still thinking about ways to kill Myself !!! I’m in My 50s (suppose to be My “Golden Years”) & MS is “Hell on Earth” !!! I’ve lost control of My Bladder & Bowels. I can’t go no where & I can’t afford anything !!! MS not only Sucks but MS is Hell on Earth !!! I Pray Several Times in the Day & Night Every Day & Night that Jesus would Please Call Me Home (Heaven) !!! I have Progressive MS since 1986. Drug Companies & My Doctors drive around & get to go places in their Mercedes while I have Nothing Left. I wish We had the “Right to Die” in Indiana !!!

  • Erin Rush moderator
    3 years ago

    Hi RevTammieHartsock! Thank you for sharing a part of your story with us. I am sorry you are feeling saddened by the changes MS has brought to your life. If you ever feel like you need help, don’t hesitate to contact the National Suicide Prevention Hotline at 1-800-273-8255or online at http://www.suicidepreventionlifeline.org/. The National MS Society also has a MS Friends Peer-to-Peer support line available at 1-866-673-7436 or online at http://www.msconnection.org/Support/One-on-One-Peer-Connections. I know a lot of individuals have really enjoyed the peer-to-peer support program.

    Thanks for being a part of the community! Know you’re not alone and welcome to post here anytime. Sometimes online support comes a little easier, and the community’s here whenever you need. We’re all keeping you in our thoughts and wishing you the very best.

    Thanks, Erin, MultipleSclerosis.net Team Member.

  • muse77
    3 years ago

    As I was sitting here reading your incisive “rant,” my fingers were spasming more, and by the end of it I noticed that I cannot stop my whole hands from spasming. The urge to try to “pop” a joint, my entire hand, or in the last few weeks, my shoulders have joined in. And my feet do the same thing. I just won Second Place in the entire country for Fiber Arts Crochetfor – Okay, I’ll say it, the DAR. They want me to go to DC in June to receive my award, but I have to pay for everything, including the medal I’ll pay for after I’ve received my award certificate. Now our chapter wants me to do more and more. And I want to, too. BUT I CAN’T. AND THEY DON’T UNDERSTAND. One who calls herself my godmother had a son with MS, who, having been unable to continue as an intensive care nurse, and having been given no disability, killed himself. She says she thinks he did the right thing. But lately, even that “social circle” has disappeared. I get no replies from emails I send out about DAR matters. Half the time, if I have to talk to someone, my whole mouth and face freeze up and I can’t be understood. I used to be a professional opera singer and speech teacher. That loss of self was a slap in the face. Oh, and my ex-husband asked me to meet him at a cafeteria in October for a meal. He kept getting meaner and meaner, more vitriolic about everything. I told him he has to face the fact that he despises me. It doesn’t bother me at all. I’ve known for over a year. But that particular day, as we left, I walked over to my car, and heard him behind me, say, “I don’t even think you HAVE MS.” Then he slammed me against someone’s SUV, held me there with his left arm and drew his right fist back. I said, in my best teacher voice, “Take your hands off me.” Then he really drew that right tight, and went in with it, the object to break my jaw. I put my cane between us and said, in my loud teacher voice, “I SAID, TAKE YOUR HANDS OFF ME, NOW.” By that time people were exiting the cafeteria, and stopped. So he just shoved me to the pavement and left. I just got up, nobody helped me, and I forgot to get names of witnesses. I just got in my car and headed home. About 2/3 of the way home, I started to shake and shudder. I had to change all the locks on my home, and called the police. They took out a restraining order against him. Another connection lost. Another limb cut off. I have no idea why he’d want to deck me. But as you say, my body is not obeying me anymore. I’ll be 65 in about a year and a half, and since my entire family have abandoned me, I’ll lose my townhome and if they want to hunt me down, they’ll find me under a bridge. I live close to the bathroom, as you say. As I read your article, my eyes filled with tears and I started a tremor. I wasn’t just sad, I WAS MAD AS HELL. I STILL AM. But thank you so much for your piece, you give me permission to be human in this prison of a body.

    muse77

  • merblair
    3 years ago

    Marc, you remind me of my big brother. His symptoms were exactly yours. He eventually died from two forms of lyymphoma, which he decided not to treat because he was so disabled. He did participate in an early trial in the early 70s.

    Marc, my sister and have this disease, please feel free to contact me.

  • B.L.
    3 years ago

    Thank you sweetie for having the courage to say what I know at least I Have been thinking about this yucky disease! It’s ReAlly as if we have the plague; some of us; I guess the ones that aren’t like the people in those carnival commercials! I tend to have bad speech issues later in the day especially & I agree ; I despise someone telling me that “so and so” is doing so great and all they take are vitamins! Ughhhh! As if I haven’t spent umpteen hours researching this disease myself! lol ! It’s so refreshing to read a story that’s “real” , and down to earth; It was as if you knew everything I was thinking myself!

  • jvwkr2
    3 years ago

    Hi, had ms for 17 years next month & fell via my mistake nearly 6 weeks ago & getting better but made me realise my future of not walking etc. Great blog as same as me all but! Thank u.

  • tfs
    3 years ago

    This is so perfectly angry it should be framed and put on the wall. You are an excellent writer. And you made me smirk or even laugh with “I just sat there smiling and nodding my head, while on the inside wishing that a rogue chimpanzee would suddenly materialize and eat her face. ” Thanks for writing. I wish it would go away too. I don’t think I will say anymore.

  • afizmyf8
    3 years ago

    My brother lived with MS for 11 years and for the last 2 years he has been researching HSCT (Hematopoietic stem cell transplantation) which is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood. This procedure is not approved in the U.S. although it has been researched and tested since the 1990’s, because the big pharmaceutical companies don’t want it approved! They will lose BILLIONS of dollars a year from MS patients not needing medication ever again. HSCT has a 86-91% success rate– not putting MS in remission but ERADICATING it completely!! My brother had to travel to Mexico for the procedure (it is also performed in Russia and Thailand) and costs about $85,000. Yes that is a lot of money to come up with and insurance companies aren’t going to help pay for it, but it is definitely worth it to be MS free for the rest of your life. My brother was unable to drive and could not walk without a can and a month after the procedure, he is walking without a cane! Definitely do some research about HSCT!

  • Isalady
    3 years ago

    You took all the words right out of my brain and put them online. What brought me to tears was not what you said, but that you KNOW. People are always saying “I know how you feel” and I want to scream NO YOU DO NOT! But you do. Thank you.

  • Granny
    3 years ago

    Thank you !
    You pretty much said everything I’ve thought especially in the last few years. I have SPMS and was diagnosed in 1990, before MRIs or drug treatments.
    But, I also just keep trying to readjust to my ever-changing circumstances.
    Granny

  • Samish2
    3 years ago

    Bravo–did you channel my brain? You had be laughing so hard reading the paragraph about well meaning folks. The comment I hate the most is “he has such a great attitude”. The next time I hear that a rouge chimpanzee is going to enter the room. Thank you so much.

  • J R
    3 years ago

    Just a suggestion? You should have a like button on these responses to articles. Some people want to agree and be a part of the story but do not have the time or energy to actually write something.

  • MsMyers
    3 years ago

    “like”!

  • Joan
    3 years ago

    Thanks for your article, Marc. You give voice to so many people suffering in silence. Even though we, as humans, can’t seem to lose all hope, still I was glad when our governor in California recently passed legislation dealing with suicide (“Death with Dignity”). There may come a time when a person like my own daughter, whose youth was robbed by MS, may decide to take advantage of it. Until then, all we can do is take each day as it comes.

  • giraffe516
    3 years ago

    Well said. I along with a few others thought life after 50 would be fun able to go places do things. Then this disease hit at 48 and here I am. Unable to walk a mall go spur of the moment anywhere. Unable to walk my dog! I recently took a job in the city where I live…as spring comes I would love to be able to enjoy it…not to be. I too have thought of a plan for if my body totally betrays me since living alone is a care facility is not high on my list and without family children etc I deal with this everyday alone. This disease does indeed SUCK!

  • MsMyers
    3 years ago

    Thank you, Marc, for putting voice to my thoughts. I have been diagnosed with RRMS for more than a decade, and although I always put on a smile and face the world with as optimistic attitude as possible I am also pragmatic about this disease and the inevitable downward path I see ahead. One of my biggest frustrations with family, friends, doctors, EVERYONE really is that if I DO ever speak frankly about end-of-life plans it is very upsetting to them. I have been told SO MANY TIMES “Your best days are still ahead of you!” – no, no they aren’t. My best days were before this cursed disease stole most of what I used to be and do and feel. And when it steals too much, it will be my choice to go. Thank you again, Marc, for ranting for all of us.

  • J R
    3 years ago

    I am totally picking up what you are laying down. When I watched the news last night and I heard about thunder and lightning storms. I literally thought wouldn’t it be nice if I was struck by lightning,it stopped my progression, reset my body and it started regenerating my mylin to cover the exposed parts. Has it really come to this! I am a type ‘A’ personality and I am angry that I can not do a hundredth of what I used to. Happiest person she has ever met huh? Guess she doesn’t hang out with that person for ANY length of time.

  • Constance
    3 years ago

    Thanks Marc for eloquently explaining all of your feelings about PPMS. I concur with those feelings, especially about the Tecfedera commercial. I intend on sharing it with others!

  • Pamayla darbyshire
    3 years ago

    i totally agree with you on the tecfedera commercial. they make it look as if MS is a very mild disease and we can continue with normal lives. NOT. i have PPMS, mild though it may be, it has robbed me of so much. thanks marc for sharing what most of us may feel at times.

  • bug54
    3 years ago

    You really said eloquently what I feel deep inside. Great article !

  • debkelter
    3 years ago

    Wow Marc! I enjoy reading your posts, but this one was just riveting. I was completely enthralled and just totally grateful for the shockingly honest feelings you poured out in this one. Although my MS has not become this bad, each time I encounter a new problem, the feelings you have shared are the same. This disease sucks the life out of you and I can relate to every single thing you have said in this post. I love that you still have a that sparkle of sense of humor in your writing and I also like that you are sensible enough (as I am) to know that “pulling the rip cord” is not a bad thing when your mind is ready to be free of the crumbled, useless mass your body once was – not that we should dwell on that, but it’s ok to feel that way. You voice what lots of us feel, you do it with rage, anger, but most importantly, humor! You have so much to give Marc. Thank you. Great article.

  • Debbie S.
    3 years ago

    I hate MS and everything about it. I hate the complete derailment of every vague plan I had of how the second half of my life would go. I hate being slow, hate using a scooter and a cane, hate having this stupid progressive MS that is like falling off a cliff in slow motion, and I hate the jealousy I also have of the “normal” people. I am always happy to see your posts because you express my rage so much better than I do, but always with that edgy humor that keeps me going. It does feel good to cough up some of this anger and be able to laugh at the same time!

  • Jewels
    3 years ago

    Marc,

    I have been following you since the days of Dr.’s Kanter and Sadiq at IMSMP in NY many years ago. It was Dr. Kanter who told me about you and your writing. You are one heck of a writer! Personally, as I confessed last week, I don’t talk about my MS at all. I feel no reason to. After 2 decades of this, I think I have stuffed so much of it inside I am just numb to it. Pun intended. Your words made me cry. I paused many times though while reader your post, and I could not help but think, and I mean but hard about all the suffering we all go through at various levels. I too hate this disease, only until yesterday I really didn’t even realize just how much. I thank you for your words. I thank you for your gift of writing and expression. I am a praying person, so I offer you my prayers at this time as I pray for myself. My life isn’t as I thought it would be, however I do have those periods of remittance unlike you my MS comrade…my friend in battle. The game is slowly shifting though and I am frightened and alone, literally…physically,(my 2 felines are a as much help as felines can be) but I am not alone in the struggle. Fight until there is no more fighting to do!

  • Pamayla darbyshire
    3 years ago

    hi debbie, i agree with the things you said. i too thought that at this stage of my life, i would be able to continue to do all the things i had. travel alone, get to where i wanted, continue to go out with friends and wander the malls. drive long distances, walk long distance, just do all the wonderful things we used to take for granted. what a wake up call this disease has been. what a thief it also has been. each day is a crap shoot as to what we will be able to accomplish. forget making plans to go out with friends or meet them somewhere. you never know how it will all play out when you wake up. humor keeps us going in spite of what we have been robbed of.

  • ilisagirl
    3 years ago

    I so identify with all of the things you have said.The struggle is not only day to day it is every minute and second of every day.God help us, the docs sure can’t or won’t. The biggest thing that I just cannot grasp is the doctors’ refusal to acknowledge or treat the pain involved with this damned disease. But it seems like because the pain moves throughout the body that my docs refuse to treat me for it. I just cannot understand this.Does the fact that my pain travels through me make me a criminal? It surely seems that way.It makes one feel subhuman the way we are treated.

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