Wednesday, February 10, 2016
MULTIPLE SCLEROSIS SUCKS!
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.
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20 years and counting for my son, Greg "Crash" Cooper, now almost 46 years old was dx with "profoundly severe MS". Like you, he keeps on keeping on. Unlike you, he no longer has short term memory. He often asks why he shakes, where he lives, does he have any friends or money and even how old he is. HOWEVER, like you he fights every day to do his best. He makes sure he engages in conversation with strangers, just so he can make them smile. He must have around the clock care. He's amazing. He's most proud of his poetry book, MIND WORKS. He looks at it many times a day and asks if it has made any money. It's the only book he looks at, always as if it's the first time he's seen it....even though it was published almost 4 years ago. Marc, you are my son's voice and in some ways mine. We too are so grateful for CBD and MJ....they make his life manageable. My son is most proud of being in a 1998 documentary with Dr. David Suzuki and in the documentary called The Union: the business behind getting high. I'm so glad he has something that he remembers and is so proud of. Like you, he is also amazing!! Thank you for being the voice for so many. If only the world knew the real tragic stories of MS. As you said, those are hidden. I think because they are too tragic for most to comprehend. Perhaps more research would be done if the real life long tragedies were exposed. Thank you dear Sir as you always lift my spirits.Delete
I have ms...i can still walk..i feel the world needs more awareness..your rant is what is on all of our,minds _ m s ppl...Delete
i guess I should be happy with what I can do... still..
I'm sorry you have ms..ppl need to realize that anyone can get this..and you will care about it when it affects someone you love...or even urself...
Unfortunately..that's the way it is..
Please raise awareness for our horrible disease!!!!
Thank you for sharing your rant. I sometimes need to do this and feel guilty for it and no one should; thanks for reminding me it's okay to let it out.Delete
Thank you for saying exactly how I feel. You always get it right and I ache for all of us who live with this MonSter. Of course we have a plan - but I'm not ready to give up yet. I cried reading this - for you, me, and everyone with PMS. I hope you have a decent day with less pain than the day before. I hope I don't fall again as I did twice in a week (EMS had to pick me up off the floor at 4:30 AM). I hope this horror comes to an end but I want to live to see a grandchild in my lifetime. Bottom line, as you said, it sucks.ReplyDelete
Marc...vent away. You have worked hard to educate so many, it's time to take some time for yourself! Vent, vent, vent! I doubt it helps but you need this. I am not in any way experiencing the ravages of this disease as you are but when someone constantly reminds me how well I am doing I want to bash their head! It is so condescending.ReplyDelete
Your blog has meant so much to so many...you have done something amazing with this disease!
I agree Beverly, when people tell me how good I look it takes all my effort to not tell them to **** off.Delete
Thank you so much for sharing your honest, blatant anger toward the MonSter. I hope you don't mind that I shared your link on my own MS blog. Mainly because my words are basically tame compared to yours and I don't want my readers to view me as a pansy. I hope you will take a moment and visit me www.lisa-mccombs.blogspot.comDelete
Dear Lord Marc you just about hit every nerve ending left in my MS body. At the hospital I was called to task by my Dr for showing her my poison bracelet and telling her it's function. I also have a medieval ring, quite pretty actually I wear all the time and Have the exact dosage necessary. Of course those led to a change of rooms for the MS patient with th broken neck to one without Windows Nd a daily visit from a shrink. Insanity....I laughed at him....show me one patient with ME for 15 years or more who has not contemplated this, and forget haven't they're the ones who need your help, not me. We all have that point where enough is enough....Kevorkian was a hero.....thAt man had balls...the NYer kind. We need more like himDelete
I was diagnosed in 2001 and last year was a litany of setbacks, including a new wheelchair ramp for my house. With the help of a therapist, I'm reminded that with MS we are in an almost constant grieving process. You're not alone, and no one really knows how and/or what this disease steals from us in the ugliest, sometimesReplyDelete
tiniest increments. I'm not going to tell you to "keep up the fight" or what an inspiration you are. We are all muddling through and bowing to new concessions all the time. You're an excellent writer and your words are a comfort and source of support and information for many of us. So, I'll say this because it's what I tell myself: keep on pushing. xo
Susie, you hit the nail on the head for me. I am always angry and depressed, it is because of this constant grieving process that you discuss. ms eats away at your ability to function everyday and you feel the loss everyday and know that tomorrow you will be worse than you are today. I am relatively lucky because even though I have SPMS I am going for HSCT treatment next month in Russia with the hope of stopping the progression. I hope will help me stop the grieving!Delete
This! So very much this! It's not said often enough.ReplyDelete
TheGreekFromTheD is still missed.ReplyDelete
This was an eloquent passionate raw post.
MS is torture even if it is your body torturing itself.
I believe it will be curable or preventable someday, I wish that were now, or twenty years ago.
Thank you for remembering George,The Greek from Detroit. I just wish that he was remembered for something besides having MS and dying.Delete
Marc, I hear you ... I have no words... wish you could hug your wife <3ReplyDelete
YES. Never miss a WK post & this one is especially perfect - I love it & hate it all at once.ReplyDelete
You're right - the public face of MS is completely dominated by success stories & inspirational videos. Simple acknowledgement of just how much this disease can suck would go a long way - this post is a perfect example of that. I feel understood & fired up! I also have a more literal mental picture of you as kamikaze - hurtling head-first at MS, intent on destruction, death before defeat!
Whilst I'm lucky to be earlier on the MS path than yourself, so many people wonder why I'm not running marathons, the life of the party or even working - "there are drugs for MS now, right?" At times like that, a face-eating chimp would make a great companion animal!
Shortly after dx I stumbled upon WK & ended up reading every post from the beginning. Truly informative, always entertaining, and still the only voice I've found that speaks my language!
THANKYOU THANKYOU THANKYOU
Thank you. I recently made family members mad when I said that my cousin had a very different experience with disease than me. She had breast cancer. Had is the word. Cured is another. I long for neighbors to bring and to cook me meals everyday, people lining up to drive me to appointments. I will never be cured. Races for my disease draw 100's not tens of thousands. People tire of my neediness, esp me. MS SUCKS and then you fall. And hope you can reach the phone.ReplyDelete
Same experience as you Deb. When I was RRMS for 20 years, the pain and constant severe fatigue would bring me to my knees. I struggled to go to work and spent the rest of my time recovering from trying to be "normal". People would say, "You look so well". I guess that was their reason for not offering to help. I have been progressive for the past 10 years. I use a tilt-recline wheelchair outside the house and drag myself around limb by limb in the house. I still hear the crickets chirping. Very few people have stuck around. Progressive MS is more terrifying than cancer. And the damned Tecfidera commercials don't help. They make MS seem like it causes you to swim and go to carnivals.Delete
Thank you Marc. You inspired me to share my thoughts and insights of my son's 19 years of living with MS. Here it is:Like so many others living with an incurable condition, sometimes referred to as a disease that takes their life away, one movement and moment at a time over many years, one will get injured. MS is a slow death. Most afflicted try hard to hang on to anything normal as they watch one friend after another disappear from their life, and family leave too. It's just too hard for most humans to watch someone die so slowly; first the limbs, then the brain, until the person is not recognizable. Social media keeps the person nicely alive.....at a comfortable distance. Family starts to lie to them about the future. It's too difficult to cope with the truth. Everyone ages. Fear takes over at times. We pretend there is a future so we can breath and put one foot in front of the other. We are afraid to give up. We are afraid to keep going. As Wheelchair Kamikaze said, cancer at least kills you or you get well and carry on with a normal life. MS only promises to slowly and deliberately and methodically kill you.Delete
My son, my son. He tries so hard to find a reason to keep going. He is lucky. He has a sense of humour. He has very little short term memory. He still gets excited and is thrilled and believes over 60 people remembered his birthday!!! Thank you everyone for your birthday wishes to him......you have no idea how much each message meant to him. Today he cried because he has no memory of his birthday yesterday. I take lots of pictures. My son has been destroyed by MS. He cannot recover. He generally looks good....how lucky for those who see him. It makes life easier.
Bless my fb friends and family for never ending support and love. ✌ Don't you love his black eye!!!
Your words echo my thoughts. You have said what I have been afraid to say. Thank you.ReplyDelete
i'm going to go sit in the sunshine for a while, thankful its sunny here and i can and it feels good. maybe I'll see a bird.ReplyDelete
I agree so much with this post!!! I would add that the littlest gesture requires such energy. And I am fed up to make efforts. I am desperately looking for a way to end it all for good. But I have no gun, no car with a garage (can't even climb in a car), the few pills I have at home are not powerful enough and their ingestion would just make me sick, I can't jump from my balcony, 3 storeys is not sure enough. So, what is left to me? Any suggestion? If only this society could give me the libertty to opt out when I decide that enough is enough. Everybody speaks of dying with dignity, but what about living with dignity? Yes this is an horrible sickness this PPMS.ReplyDelete
Yes. I get tired of it all and I've thought that cancer would take care of it. I would forgo treatment and let it take care of things for me. I have all kinds of advanced directives including "no feeding tubes". I'm more scared of being a vegetable than of dying.ReplyDelete
Hey Bub, No words of comfort here, don't believe that there are any. I'm not going to preach to the preacher but you know better than I, we really only have two choices in this matter. I don't think that you're ready for the second one yet so I guess you'll just have to make the best of what little you have left. I'm not that far away if you ever need me.ReplyDelete
Congratulations Marc, for biting the bullet and expressing what so many of us feel. Diagnosed at 28 I will be 73 next week. The only thing that works is my left hand. I don't want to die but when I can no longer scratch my nose maybe the time has come.ReplyDelete
My crusade is to get right to die Iaw in as many states as possible. While it will never work for us as MS is not consiered terminal, I think we have to start there. Once the majority of people understand and accept this right, then we can hope to educate them on "existential pain." Reading is my way of fighting, and A Good Death by Rodney Syme is the first place I read that description of what we go through. He described a female patient with MS and her desire to end her suffering. I thought he was writing about me, he really gets it. He is a medical doctor unafraid to talk about this subject which is taboo to much of the medical community. I am not advertising but here is the link on Amazon if you wish information.
Thank you for everything you have done for us. This step was brave and greatly needed.
You write really well even when you're on a rant. Thanks for this very insightful post. Totally agree with everything you say.ReplyDelete
I am so sorry Marc. I also wish for just one day when I could feel normal. I want to run, and run, and just run. Run away from the destiny the universe has picked for meReplyDelete
You can guess how difficult it was for me to read this post. How many times have I wondered why George could not wait just another month, another year? It was devastating watching him decline and deteriorate, and worse watching his acceptance that there was no hope in his timeline for a reprieve or a cure. Between the disease and his isolation, he stoically made his very firm decision "to get out of Dodge". He stated that he would NOT be the poster child for MS even though his Spartan heart had fought fiercely. He chose to control his own end, as you know, and voluntarily stopped eating and drinking. It took thirteen days for that beautiful physical body to transition, but he never faltered in his determination.
For all the tears that I have shed, and the darkness I have endured missing him, I consider him a man of extraordinary bravery. I am his mother, and I saw his first breath and his last. Regardless of my sorrow, I honor his right to choose how he wanted to live or not live. He was a his own man to the last hour. And, to all who read my words and yours, I commend George and you for having the guts to reveal how bad MS really is, as well as your right to be utterly, visciously truthful. Love to you and oh how I wish I could hug that Greek from Detroit.
Sending heartfelt thoughts to you Xaidw. George touched so many of us thru his blog posts.Delete
Good article and I have seen my decline through the years. I have thought about the last years recently and tried to make peace with my maker. Still a while to go...ReplyDelete
Best ever Marc!!ReplyDelete
This is truly what MS is. I am forwarding it to people who don't get my wish to done. Perhaps if anyone truly gave us hope instead of a stupid orange ribbon. Yes, orange is the new black we with MS are always in morning for who we used to be. xox
Marc, I salute your courage to be honest. I thank you for your willingness to tell truths we all need to hear. So whatever you decide to do, I say you earned the right to do whatever you wantReplyDelete
These things needed to be said. By you, for yourself but equally so, for all of us. You've always been protective of the general population of your readers by ever so carefully educating with truths from your research and experiences. The integrity of your honesty has not been reduced by your decisions to lighten or withhold some of the uglier truths. You always seem to know when enough people need to hear certain things.ReplyDelete
If anyone has misconstrued your thoughts regarding the comfort level which even a vague exit strategy can provide as even the slightest encouragement to act upon it....I believe they've read you wrong. Your clearly stated, "Stay strong, my friends; together we may not beat this horror, but we’ll damn well keep on trying." should take care of it. It's nice to know from you and others those thoughts are not uncommon.
Yes, frack MS to hill and back. Even your idea of a rant turns into another much needed productive contribution to society. If I had a magic wand, you'd be feeling a heck of a lot better than you have been.
Thank you, friend, for your words. Past, present & future.ReplyDelete
Marc, I hear you LOUD & CLEAR brother. When my sister passed away from this shitty illness 12 years ago, she was in a nursing home in Staten Island. She was 46 years young. a year and a half later, I was dx'd with M.S.and didn't know a damn thing about it. Well I do now and then some. I vowed to never ever to see another person suffer like my sister did. Well, guess who was going down hill fast, me. I went on Avonex for the first 4 years until that awesome doctor in Italy, Dr. Zamboni came out with the procedure for C.C.S.V.I. I took the risk and was LUCKY enough to be one of the first of 200 people that had a chance to have the procedure done here in Albany NY. I'm not 100%, but I can still work and support my family and advocate for those who can't. I was going down hill fast prior to having this procedure, but I do believe that those who newly dx'd can get better relief of most of the symptoms that this illness brings us. I long for the day that stem cells will be introduced to repair our Myelin, so that those of us, like myself maybe able to feel sensation again that has been taken away by M.S. Stay strong and tough Marc, we're listening!ReplyDelete
A wonderful terrible read Marc. Sending love and hugs to you and every fellow MSer. You are truly awesome xxxxReplyDelete
I cried tears of recognition at your words of frustration. I've been dealing with MS for 3 years, and now, at the relatively young age of 29, am facing my life in a wheelchair as I haven't been able to walk for 16 months now.ReplyDelete
MS has cruelly taken everything, systematically, from me: My ability to have children, my ability to walk, my friends, and perhaps most cruel: my hope for the future.
I wanted to write that I'm right with you, and other brave souls fighting this terrible disease. Let us fight with every thing we have, and not let it take our spirits.
Too damned angry to be suicidal! And I thought the doctor looked at me cock-eyed when I told him I was depressed, but not so much kill myself depressed, rather kill someone else depressed.ReplyDelete
There lies the disconnect.
Thank you for not dressing the disease up and taking it for a humorous walk down anecdotal lane. I enjoy your posts, whether humors, informative or, as this one, the rant of honest against a wave of Disney scenery and Hollywood endings.
Hold on tight to Karen and close friends. She should do the same. It's one hell of a fucked up ride, but in the end, you win.ReplyDelete
Thank you for this wonderful and painful post, Marc. Here in Canada, we will soon be drafting legislation for assisted suicide. My great hope is that people with MS will be included in it. I am so pleased you shared your thoughts with the world. You are a gift to our community.ReplyDelete
Your voice, your voice...thank god for your voiceReplyDelete
And another thing, as long as we're venting, the "Together We Can Kiss MS Goodbye" campaign of the NMSS..........maybe I shouldn't comment on this until I calm down.ReplyDelete
I don't have the life-fucker known as MS, but my husband does. I was carried away by your awesome rant. Also, perhaps because I'm an animator, your ski-jump visual analogy ...well, it's perfect.ReplyDelete
I am not sure how many people understand what you are saying and why, but I do.ReplyDelete
Simply wanted to acknowledge the truth in your words and to say thank you. You speak for many of us who do feel that way much of the time. It is never fun or easy for anyone to be ill and to be informed that there is absolutely no treatment available and that you will continue to get worse and to get worse. Such is life with primary progressive MS or most any neurological disease. There are certainly better days but the future is always looming which can make living with this disease someone of a slow torture.ReplyDelete
Marc, judging by these comments, I'd say that you have hit on a nerve of many, many of your readers. You have said what we all feel. If we all had the immense brain power of a Steven Hawking we might feel a little bit more optimistic, but even he must have days like this. My other hero,, Herrad had the legal option and readily available means yo end it all, but, like you, she chose life... until the very end..ReplyDelete
I get it...I get it...I get it. Thank you, as always, for honestly sharing with all of us the truth of what you battle every day. Many of us do as well, and does it ever suck in its constancy and downhill trajectory. Maybe I could take it for me if I could fix it for everyone else? Also, it would be comforting if I could be assured that today's youngsters would be immune from all of these so-called "auto-immune" diseases. I know that would help me a little. All of these comments posted here reveal that, sadly, many of us really really get it dear Marc. Our love and gratitude to you.ReplyDelete
Oh no you di'n't! You went there ! I often think we have more compassion for our dogs. We "put them to sleep ""to end their suffering while humans "give up" and commit assisted suicide.ReplyDelete
Yes, a thousand times.ReplyDelete
Yours in solidarity.
Fuck you MS.
thank you so much for saying what I have thought ....... so very helpful.ReplyDelete
The most recognized face of MS, Mrs Romney, didnt just walk out for TV interview but did it in high heels. With you. Had it. Thanks for the honesty we never really get.ReplyDelete
I hear you buddy!ReplyDelete
Given what MS has dealt me in the last few months, your post speaks to me with a depth I can't describe. Bowel issues resulted in an emergency surgery and an ostomy which the doctor swore was temporary. However, he now seems to be back peddling. That cannot be. One way or the other, this situation will be temporary -- whether I get put back together or not. So far, I've taken everything MS has dished out, sucked it up and dealt with it. But not this. This is a bridge too far, and I will not crossw it.ReplyDelete
Wow, I'm blown away by the response this post has received. Thanks to all who have left comments, all of which I've read and have left me deeply touched. The shared angst and wisdom contained in all of them is humbling, gratifying, and somehow saddening and comforting all at the same time. I wish this disease afforded me enough energy to answer each comment individually, but unfortunately, given my current reality, I'll only be able to answer all of these tremendous comments with one of my own.ReplyDelete
Looks like there are a lot of us out there, suffering through all the slings and arrows that the disease metes out, sharing some of our thoughts and feelings with others but keeping other, more private and troubling thoughts to ourselves. I suppose that by giving vent to my own thoughts on these matters, I've cracked the window a bit and giving others a chance to take a breath and then exhale. In that sense, I'm grateful that I'm able to give voice to feelings that otherwise only exist in silence.
I only wish that all of our fondest dreams come true, and that we could all be rid of the disease and the emotional turmoil that goes with it. I don't anticipate some tremendous and miraculous advance in medical science that will pull off such a feat, but then again, you never know. As much as I laments the fact that very little MS research is directed at finding the cause of the disease, without which there can be no cure, I am heartened to know that my own neurologist, Dr. Saud Sadiq, is directing a laboratory actively seeking just that goal. So there is reason to hope, folks, and hope is the fuel that keeps us going. False hope can be poison, and hope should never be allowed to eclipse reason, but I do know that advances are being made, albeit not nearly fast enough.
Thank you all again for your heartfelt and wise comments, and I wish I had the time and stamina to answer each comment individually. As I've repeated in other essays, this quote from the movie "Diner" has always stuck with me, and becomes more apropos with each passing day living with this disease. "If you don't have dreams you have nightmares", so despite all please do allow yourself some time to dream, even while staring the beast in the eyes and acknowledging the realities of the situation and planning accordingly.
You all have helped add fuel to the fire of my own personal fight, and I only hope my contributions to your efforts to live with this disease can amount to even a tiny fraction of what you've given me.
Hello. A guy named Bob Cafaro healed ALL his MS lesions. It is not a medical miracle, it is medically unprofitable. I started a blog just to talk about what he did and what I am doing now. www.fromwheelchairtowalking.netDelete
My partner had cancer before MS. She has repeatedly said her cancer experience was far easier to go through than the MS.ReplyDelete
I feel too exhausted to write a long comment other than to say thank you for verbalising my feelings towards this parasite of an illness. David L from the UK.ReplyDelete
So well spoken. Thank you for verbalizing what we all are feeling. Becky in El PasoReplyDelete
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You are my absolute hero. Love you so much! --- SimoneReplyDelete
Your post fueled my anger towards so many in the industry. I would love to put your post on the desk/bench of every neuroscientist, neurologist and pharma CEO. Hmm, I might just do it! xoxoReplyDelete
Wishing you all the very best Mark. MS is horrible to say the least.ReplyDelete
Hugs to you your a very brave man & thanks for sharing.
Can we share your story on FB for our friends to read and be educated?
Thanks so much for your comments. Yes, you certainly can share this post, I think the more people who finally understand the true nature of this beast, the better.Delete
In fact, you can easily share the post by using the "share to Facebook" little button at the bottom of the post itself. It's kind of greyed out, but if you click on the little Facebook icon it will open a window making it very easy for you to share the post.
Every election season, I think often about you, Harvey Wasserman, Kevin Kastning, Joyce Linehan, the late Hester Snow, Steve Rae, Nena Negron, Mark Nacht et al. from the crazy days of KRC. Never again did I ever work with such a fun and eclectic group of people and I look fondly back upon those days of Indian Food and Chinese Food in the supervisors' "office".
I wish I had words of wisdom and comfort to extend to you, but all I can say that I'm sorry to hear that you're illness has progressed so drastically and dramatically.
I'm periodically in Manhattan to visit my son in Harlem, on one of those visits, if you're up to it, hopefully we can get together to relive those Springsteenian "Glory Days".
PS. Q. How many KRC Supervisors does it take to run a phone room?
A. Six: Five to sit in the office, and one to go get the takeout Chinese food.
So wonderfully great to hear from you. I, too, reflect back on our KRC days with much fondness, and when doing so find it almost impossible to believe that all of that happened almost 30 years ago.
We did have quite the colorful bunch working there, didn't we? Not only our fellow supervisors, but some of those phone callers, wow! Harvey and I have talked many times through the years about how we should have just gone home after each shift and written down some of the goings-on, we would've had several seasons of a sitcom basically written for us.
Anyway, would love to catch up. Shoot me an email if you can, WheelchairKamikaze@Gmail.com.
Again, it's so great to hear from you…
Thank you Marc. You inspired me to write about my son's 19 years of living with MS. Here it is:ReplyDelete
Like so many others living with an incurable condition, sometimes referred to as a disease that takes their life away, one movement and moment at a time over many years, one will get injured. MS is a slow death. Most afflicted try hard to hang on to anything normal as they watch one friend after another disappear from their life, and family leave too. It's just too hard for most humans to watch someone die so slowly; first the limbs, then the brain, until the person is not recognizable. Social media keeps the person nicely alive.....at a comfortable distance. Family starts to lie to them about the future. It's too difficult to cope with the truth. Everyone ages. Fear takes over at times. We pretend there is a future so we can breath and put one foot in front of the other. We are afraid to give up. We are afraid to keep going. As Wheelchair Kamikaze said, cancer at least kills you or you get well and carry on with a normal life. MS only promises to slowly and deliberately and methodically kill you.
My son, my son. He tries so hard to find a reason to keep going. He is lucky. He has a sense of humour. He has very little short term memory. He still gets excited and is thrilled and believes over 60 people remembered his birthday!!! Thank you everyone for your birthday wishes to him......you have no idea how much each message meant to him. Today he cried because he has no memory of his birthday yesterday. I take lots of pictures.
My son has been destroyed by MS. He cannot recover. He generally looks good....how lucky for those who see him. It makes life easier.
Bless my fb friends and family for never ending support and love.
Hi Marc, I have been reading since several years your wonderful blog. Be sure that your words helped a lot of people, me included. Thank you very much. I still have SPMS and keep on fighting. A big hug to you from ItalyReplyDelete
Perfect, Informative, Cathartic for me, RRMS diag 2007, got the dwindles. Will Blog this forward, Marc. You are one of my Top Favorite MS bloggers. When finally diagnosed in 2007, I had been nurse for many years, saw many MS patients in various degrees of decline. Outside they generally appeared OK with their level of disability, more progressively faster than these days with dmt's. Inside, if you sat down, like I did, and ask how or why they were happy, I would get a little of what you said, rather, screamed out. It hurts, just shoot me know. Like an iceberg, the emotions leaking out, had to be done carefully, lest more people walk away, shy away, shun, doubt, ignore. At home, a constant coordination of home care services and social work, dodging money troubles, shady caregivers, rough, tough, stupid, slobs. Nurses and Doctors, some bossy...Walk and you'll feel better. I needed Raw, Unadulterated, Ripped, Torn, Talented blogs to follow. Your blog caught my eye. Your videos Priceless, Your Fortitude, Grit, Adaptability admirable. You went on my list. RRMS here but finding the misery of being ground down. I have something like survivor guilt for you and our Friend Herrad who recently passed on. Her blog, Access Denied was my first to follow. She graciously shared her life as a virtual quadriplegic with her stellar husband caregiver. This post made me sob for a minute. It felt good. Like a roadmap, you help show me the interior thinking of all the bedridden victims who said, "I'm OK" with a sadness in their eyes. Now for Rx, there is hope on the horizon...at least I hope so. I am fascinated with Terpenes. Frankinsence and Myrrh, CBD and THC. Have a great day!Even if it is Crappy. I'll try too. Best to your wife.ReplyDelete
I followed Herrad's blog at Access Denied and always wondered about her when there were no new posts. Condolences to her family.Delete
Hope she's enjoying her new perfect body that God promises us!!
holy shit, marc. your honesty and clarity never cease to ring true. i'm very glad you've stuck around as long as you have. thanks, as usual, for speaking your truth, that in many ways is all of our truths.ReplyDelete
Thank you for writing this! My heart goes out to you! I do not have MS or any other illness. I just try to understand. I know I can`t. But maybe a little more every time I read honest thoughts and words by people like yourself. I wish you well! And thank you again!ReplyDelete
Maybe I've got a lesion that skews my logic and emotional response in inappropriate directions, but when I am exposed to images and stories of those with advanced MS, I feel exactly the same way I do when I am exposed to images and stories of those in WWII concentration camps. Just because there isn't a madman causing the suffering, doesn't mean it should be allowed to continue.ReplyDelete
How I wish we could expose the ugly truth of ms on mainstream media...simultaneously flood every station with our voices, images, and stories. Maybe then we would be able to raise and properly direct funding to research for a CURE for this horribly inhumane disease and to change the inhumane laws that prevent us from legally escaping the torture that is ms.
There are so many things that need this kind of attention and action though...
Sigh. I'm sick of only being able to wish things were better.
The river of donated monies that are then allocated to crafting positive, reassuring, and to my mind completely unrealistic images of MS patients should all be re-directed toward research.
Greetings from Aotearoa/New Zealand. I only recently discovered your blog and congrats on keeping this going. Your writing on this bastard of a disease is refreshingly honest.ReplyDelete
You may be interested to hear about some work being done down in our part of the world regarding progressive MS. Check out Innate Immunologies who are trialling a drug called MIS416. I am very fortunate to have been receiving this drug on compassionate grounds for the past 9 months and it has made my life a lot more bearable with increased energy levels, better mood and a more outward focus. The science behind the drug is a bit beyond me to explain but it seems to give the immune system a boost to clean up some of the collateral damage around the lesions.
Another good Australian based site for news on new therapies is MStranslate. Spoiler alert - I feature in a short video on that site.
Holly shit you made me laugh/cry. I am facing the secondary Progressive form (The Neurologist called it a spiral down.) Newly divorced, faced 50, 11 year old and 14 year old. I have an MFA in Painting and Glass, but haven't done art in a long long time. Blogging seems doable. www.msdistilled.com My Dawn blog. I will be quoting you sir. You rock!ReplyDelete
I wish I had words, you say so much I think and can not quite voice.ReplyDelete
You nailed it perfectly. I agree with everything you say. I'm secondary progressive and can feel the fade. I say one hundred times a day that I hate my body, I hate MS, I hate what I'm doing to my loved ones. I'm angry and bitter, have gone through the "why me" dialogue in my head many times. Yes, there are people who are worse off. But, thinking that just makes me more depressed.ReplyDelete
And I'm tired of getting those pep talk notices from my MS Society that spotlights people with MS, all walking around of course and living a good life. That is not the face of MS. And what are they doing with the millions they raise each year? I read someplace that they pay themselves [members of the board] first, then their expenses, and the paltry sum that's left over goes to scientists. Sure, if there was a cure, the pharmaceutical companies would feel great pain.
Perhaps you've tried this but I'll tell you anyway about something that does work for me, for the spasticity in my legs that always kept me awake all night. I started eating cannabis cookies, created especially for this purpose, and I can sleep 6 to 8 hours at a time. It doesn't cure, but it helps.
Sorry for using your comments page to upload my own rant. I am normally an optimistic person and don't share my true feelings with those close to me.
I enjoy reading your blog. This one certainly resonated with many. Thank you.
Similar thoughts I have had. The interminable aspect of M.S as opposed to other diseases.ReplyDelete
Marc, your honesty inspires me.ReplyDelete
Best article I have ever read about MS. I was diagnosed at 18 years old that was 43 yrs ago and secondary MS does suck. if I was able to do it I'd commit suicide. Thanks for giving something to read that was so true and made me laugh.ReplyDelete
thank you, thank you, thank you, thank you!ReplyDelete
I have it too - it sucks! And indeed I found this article because after a very tired and near undoable day I typed in google "MS sucks"! And it does. For me, it's watching my wife and daughters look on with depression to see their "better Half" (lol), and their usually very engaging dad become a bit of a basket case. But we're not!!!ReplyDelete
That's how we feel. BUT.... I smoke a bit of canabis, dope, gunja (sp?), weed etc, before I go to bed at night and have to say it works amazingly. I say this because I decided not to do so for at least a week. Now, after only 4 days, my body is seizing up! My legs won't go, my brain won't either and subsequently I fall into the pit of self degradation.
I don't want the chemicals the neuro's want me to take. I don't want the pep-talks, I don't even want the sympathy. No, what I want is the relief from this bloody MS. It gives it.
So my friend, after having felt entirely demoralised by todays situation, and after reading your comments which so rang home, I'm off to get some more to smoke - you can drink it, eat it, do what ever you like with it but most important, it really does help! We need to get the laws changed.
In the mean time, take care and keep your chin up. I really appreciate your circumstances!!!!!
Marc, your a Big time thinker. That was a powerful message. Thank you and take care.ReplyDelete
What a great, honest post/rant. It sums up many of the feelings and frustrations I've had since being diagnosed.ReplyDelete
"One woman cheerily informed me [...] 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."
I laughed (nervously) out loud when I read that because as I'm certain I've had the same fantasy while listening to other "well-meaning" folks wag their lips at me (not-so-subtly imparting how they think I should feel about my MS). It's interesting the coping mechanisms I'm developing for this. Sometimes I picture a MS zombie eating their face. Other times I think how funny it would be whip out one of my catheters to jab them with. I want to poke all kinds of holes in their shitty, fake, happy bubble until all of the ignorance pours out. 36 years young, female and catheterizing. FML, the next person that implies I should have a positive outlook and be happy about this is getting a catheter in the eye! :)