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Multiple Sclerosis: The Ugly Truth

(Warning: the following essay contains frank descriptions of the physical ravages that can result from Multiple Sclerosis, and may be disturbing to some readers. Those who are sensitive, or would simply rather not know, should stop reading now. Really.)

For much of the healthy public, the face of MS comes in the form of celebrities who suffer from the disease. At the current time, here in The States the most prominent MS representatives are probably Ann Romney (wife of presidential candidate Mitt Romney), Jack Osbourne, and Montel Williams. Mr. Williams in particular has become a full-time MS activist, bringing welcome publicity to Multiple Sclerosis as he chronicles his struggles to fight the disease. I have nothing but respect for anybody battling this heinous scourge, and I don’t mean to belittle anybody’s misfortune, but I often find myself wishing that the public could see much deeper into the horrors that MS can inflict, beyond the relatively robust Mrs. Romney, the newly diagnosed young Mr. Osbourne, and the charismatic Mr. Williams.

The following snippet of an Associated Press article on Mrs. Romney’s experiences dealing with MS is typical of how the mass media often portrays Multiple Sclerosis:

“The wife of Republican presidential nominee Mitt Romney said Wednesday that her love of horses helped her overcome her fear that Multiple Sclerosis would put her in a wheelchair.”

As frightening as the prospect of being put in a wheelchair may be to the general public, the above quote significantly downplays just how monstrously devastating the effects of Multiple Sclerosis can be. I applaud any publicity that shines light on the disease, and certainly, it takes courage for those in the public eye to speak openly about their illness, but the beast that is MS can do far worse than leave someone reliant on a wheelchair. This public face of MS most often provides only a faint glimmer into the hellish world of those more severely afflicted with Multiple Sclerosis, a reality that can shock even those suffering from lesser ravages of the disease.


As a truly distressing depiction of the dark side of MS, the plight of former Mouseketeer and teenybopper starlet Annette Funicello stands in stark contrast to the sanitized version of the disease that is most familiar to the general public. Mrs. Funicello has been decimated by Multiple Sclerosis, its wicked impact leaving this once vibrant woman — who several decades ago epitomized exuberant youth — trapped in a living nightmare, her body gnarled and fully frozen while her mind presumably remains intact. For those who can bear to watch, Canadian television’s CTV network recently produced a video profile of Annette Funicello’s current condition, and her loving husband’s never-ending struggle to find some treatment to help relieve her suffering (click here for part one, and here for part two). Be forewarned that the content of these videos may scare the living s$!& out of you. Please don’t watch if viewing the worst that MS can do might have deleterious effects on your own ability to deal with the disease.

The past two weeks have not been kind to quite a few of my MS friends. One dear woman, who is amongst the sweetest souls I’ve ever had the pleasure to know, recently lost the ability to swallow, a development that necessitated the surgical implantation of a feeding tube into her abdomen. She will never again experience the simple pleasure of eating. Another friend, an accomplished artist who uses MRI images to make compelling pieces of visual art, informed me via email that she is now for all intents and purposes a quadriplegic, and can no longer use her own hands and fingers to bring her creative visions to realization. Instead, she “choreographs” a helper, providing verbal instructions to an able-bodied person in an attempt to maintain her artistic output. The anguish came through loud and clear in the voice of a big hearted man who has seen the disease rip apart not only his body but family and fortune too, while he haltingly told me that he had lost the ability to hold himself upright in a seated position, and has suddenly been plagued with fecal incontinence.

Through my many years of actively taking part in online Multiple Sclerosis forums, I’ve borne virtual witness to the steady decline and ultimate demise of more patients than I can bear to recall. The pattern has become hauntingly familiar; the slowly dwindling chronicling of ever mounting indignities and disabilities, and then a silence speaking loudly of total incapacity and sometimes even death. Occasionally, a family member will kindly put up a post informing the deceased’s online friends of their passing, but more often than not the person merely vanishes into the ether. I daresay my own online activities have similarly diminished as my disease (which still defies definitive diagnosis) has advanced, hopefully not a harbinger of things to come.

This is the true face of MS, a face little seen by the public at large. Of course, many patients suffer a far milder course of the disease, but a significant number do not. As much good as celebrity MS ambassadors can do, I fear they don’t convey the true depravity of the illness, and may in fact serve to lull the public into a sense of complacency regarding Multiple Sclerosis. Almost always, mention of the condition is accompanied by assurances of astonishing medical breakthroughs, of researchers on the verge of finding a cure, of proclamations that now is the best time in history to be diagnosed with MS. What’s left unsaid is that forms of the disease remain completely untreatable, and the pharmaceutical remedies available to those that are treatable are hugely imperfect, at best. An actual cure remains a distant dream, as the vast majority of research dollars are directed at developing new and supposedly better ways of suppressing the aberrant immune response allegedly responsible for the devastating effects of MS, resulting in drugs that can improve the quality of life of relapsing remitting patients, while quite possibly doing nothing to stem the actual progression of their illness. These drugs do not a whit to cure the disease, even as they reap huge profits for the companies that manufacture them.

The medical research model that has evolved in the United States is quite simply broken, warped by the corrosive influence of blockbuster drugs generating fantastic profits. Over 75% of medical research done in the US is funded by the major pharmaceutical companies, all of which are publicly traded entities. As such, they are mandated by law to be beholden to their stockholders, not to the patients taking their products. The job of a drug company CEO is to constantly expand his company’s bottom line, by endeavoring to create an infinite stream of ever-increasing earnings. Thus, research dollars flow to projects most likely to result in huge profits, and these projects tend to follow the lead of previously successful ventures. Scientific researchers, in need of steady income, are of course drawn to projects that will receive ample funding, and so a dysfunctional cycle has developed, one in which good people simply doing their jobs perpetuate a system of medical research that has failed to cure any major disease in decades. As the stream of government research funds dries up, due to harsh economic times and shifting political philosophies, the situation becomes even more acute. As the saying goes, the road to hell is paved with good intentions.

Perhaps if the public was privy to the hideous reality of those most severely afflicted with MS, and was made to understand that such cases are not mere outliers, their revulsion would spur an outcry that might shatter the status quo. It’s not as if there are no funds available to fuel the research efforts needed to conquer horrendous illnesses. The US Air Force’s newest jet fighter, the F-22 Raptor, comes in at a cost of approximately $350 million per airplane. The F-22 is a wondrous piece of technology, invisible to radar and able to cruise at supersonic speeds. It was originally designed to fight an adversary that no longer exists, the Soviet Union. The Air Force has 187 of these fighters. Would our nation’s defense be significantly hampered if the Air Force possessed only 184 of them? The roughly billion dollars saved could certainly fund a concerted national research effort that might rid mankind forever of diseases whose cost in human misery is incalculable. It’s simply a matter of priorities, and in the language of World War II GIs, the priorities of our society are FUBAR (F%^&%#d Up Beyond All Recognition).

I’m constantly amazed at the courage, bravery, and fortitude displayed by the MS patients I’ve come to know, whose grit and determination serve to gird my own. If only our national zeitgeist would take its cue from the steadfast heroism of those afflicted with terrible diseases and those who care for and love them, and raise an outcry demanding that our nation flex its immense intellectual and financial muscle to find ways to better human life, rather invent technological marvels intended to destroy it. The generals could still have their high-tech toys, only a wee bit fewer of them. Perhaps if MS and other horrendous diseases were portrayed in their full horror, and not in the sanitized versions commonly depicted by our mass media, a change in priorities might be possible. There is a vast Holocaust happening just beyond the eyes of the public, a Holocaust that will likely continue until that public is forced to look upon the contorted faces of the afflicted, and is made to understand such a fate could very well be their own. As John Donne wrote centuries ago, “Ask not for whom the bell tolls, it tolls for thee…”

This article was originally published on Marc’s website on 10/15/12 and is being featured on MultipleSclerosis.net with his permission. We are sorry to note that Annette Funicello died on April 8, 2013, after this article was written.

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

  • Kat
    4 years ago

    Excellent,well written article. I was diagnosed 15 years ago,but I’ve just recently joined discussions on different sites. I am unable to view the video of Annette Funicello, and was wondering if anyone could help me with this problem.

  • Cathy
    4 years ago

    I was diagnosed in 1994 at the age of 26. I am active and mobile with very few exacerbations over the past 21 years. I admittedly was angry when I first read this article because I am educated and know what potentially may lie ahead for me. MS robbed me not of physical abilities but emotional abilities. I am single and alone, but currently work full time as a HS counselor and I love my job each and everyday. I hid behind the what ifs for 21 years and wasted decisions that I may have otherwise made, such as the conscious effort to start a family of my own. I liken it to peering from behind a wall every day. What’s next for me? when will it happen? How will I take care of myself? who will take care of me if? It’s exhausting and frightening, so the article angered me. Someone’s pooping on my parade. Then I continued reading the comments and it clicked. I get it because the realities of the disease exist and despite every single persons unique journey, we need to educate on the ravages and not just the “brave face”. Thanks for the article and the responses that helped me see my disease through the eyes of others

  • Teri
    4 years ago

    It is great to have a person who can speak so directly to the issues of those of us with MS. I taught students with special needs for 35 years in two states, three school districts but had to retire due to disability and did not get my full retirement. As I heard in many of the comments, MS often brings surprise expenses and things I used to do myself I am not able to do. I am fiercely independent and I fear losing my independence. When my MS began to get worse, my husband forced a divorce. I am better off but I am still young enough that my family asks about dating. I have visions in my head of inviting someone to dinner and he uses the restroom and all of my equipment for bowels/urinary are on the shelf. Sounds sexy?
    I help at fundraisers for other events. I wouldn’t wish this disease on my worst enemy. However, the only way MS will get any government assistance is if someone’s child, spouse, grandchild, etc is afflicted. I recently moved South to be close to my sister who is a nurse— she knew the disease but until she was with me, she really came to know it.

  • Jan
    4 years ago

    Marc, you’re a spokesman to whom I’ll always “listen.” I was handed my dx (sentence?) in 1983. Neuro told me that I had mild/benign MS. At least he found it and I didn’t have to go thru many drs. I’m now SPMS after no DMD, am collecting SS and am keeping my fingers crossed that it doesn’t get worse. I have 3 different canes and a walker. I use my poor husband as my “human cane” in order to go out. At least I can still shuffle around for short times.
    Keep up the good fight!

  • giraffe516
    4 years ago

    As an individual living with this disease I want me to have faces associated with it.
    However one other thing Ann, Jack, and montel all have in common….I limited funds to make their ms life easier. I bet not one if these individuals works a 7 day week and then comes to a to clean their house carry laundry up three flights of stairs , grocery shop and then have to carry Those groceries in the house and put away. After which have to cook, clean up, give kids baths, get homework done…etc. I could go on forever. Basically live life without help and do all of it with this disease. And on top of it having to decide do I pay the mortgage it pay for my drugs!!!! While I do not wish this horror on anyone…it would be a it would be a lot easier with MONEY!!!!

  • L Grah
    4 years ago

    Oh, I have MS. I was officially diagnose Feb 8, 2008. I want a cure, that will stop the progression, and put me back to how I was before.
    Lisa

  • L Grah
    4 years ago

    Thank you for the writing the article. People tend to forget or don’t realize that MS is a degenerative disease. It progresses and can cause disability, more and more so. There are also different types of MS. And, the medicines they have don’t cure MS-they slow the progression. And, they have their own side effects. And the cost? And, MS is a designer diseases. A snowflake disease. My MS is not like others. And, how I wish I had some other people’s MS. Esp when my bladder lets loose and my body doesn’t want to cooperate with me. I loved your article, and I feel we need to inform the public about MS-all stages of it. All aspects of it. Thank you for writing it.
    Lisa

  • north-star
    4 years ago

    Does anyone find it ironic that fundraisers for MS involve walking, biking and racing? I would participate in “Drink Coffee for a Cure” or “Fight MS at the Movies” or “Take the Zipline Challenge” or maybe a screaming event: “Let It All Out for MS.” I’d participate gladly in all, but I’d enjoy screaming the most. I want revenge. MS is a vicious monster.

    I agree about the public face of the disease. Many of us had relapsing and remitting MS and remember the days when we could pretend we were normal. But that time ends eventually. The most basic abilities, walking, talking, toileting, planning and sequencing are affected and as MS nibbles (or devours) abilities there’s an erosion of self-image that is profound. I don’t know how to explain that to someone. I don’t want to talk about how I manage bodily functions and nobody except pregnant women in their first trimester can understand the kind of fatigue we experience.

    I had a formerly vivacious and charming friend who had primary progressive MS. It was hard to understand at first why her ability level kept declining so quickly. It was my first experience with the rapid onset and rabid progress of the primary progressive version of MS. It was shocking and terrifying that MS caused her death.

    About that time I realized that I’d had MS all my adult life. Every plan, decision, has taken that into account. I can’t let myself think about what might have been, except sometimes it happens anyway. Is this life enough? Did I give up some things needlessly? Did i do everything I could?

    I’m very lucky to have family and friends who understand and know more than the average American does about what living with MS means. They’ve seen the progression in me to the point where I have no doubt they’d stand by my side at the “Let it All Out for MS” screamathon.

    The part that makes it hardest to communicate about MS is that every single case is unique and a whole lot of people are in the phase that looks relatively easy to live with. That’s always going to be a problem, I think. Americans have this “you can do anything” focus that is ridiculous. Sometimes you just can’t and it has nothing to do with attitude or effort.

    The article and all the responses were very interesting. Thanks for a thought-provoking experience!

  • Sooz
    5 years ago

    forgot to mention- I was diagnosed in 1986. Got worse and had to go on disability in 1991 at age 40 and have never been back to work. MS got worse in 2004 following the death of both my parents but has since gotten a bit better.

  • Sooz
    5 years ago

    Great article! It’s so true. I have some friends that just don’t get it. Because I’m still walking-though quite slowly and for short distances-some don’t even seem to realize that anything is wrong with me. This may be the most frustrating part for me. I have to say that during the last presidential election I was thrilled when one friend called to tell me that she didn’t believe Ann Romney had it. I have to admit the thought has crossed my mind. How could she possibly endure the campaign season even with a mild case? I do wish there would be a representation of the disease that was more realistic. Even the society magazine relies heavily on stories about and for those with RRMS.
    As for a cure- I’m not holding my breath. In fact I think using phrases such as “until there’s a cure” are cruel. Tell me please one disease that has ever been cured. Prevented yes but not cured.

  • Laurie
    5 years ago

    Sorry about the spelling errors. Hazard should be hard and niece should be believe. Between auto correct and the tremor in my hand I’m lucky it didn’t come out as something really embarrassing.

  • Laurie
    5 years ago

    While as a person with MS I am acutely aware that a cure remains elusive, I have to wonder if spending more money on MS research would actually get us closer to a cure. Yes, Big Pharma’s focus is on profits, which is as it should be for any publicly traded company. But I find it hazard to bieve that they aren’t actually looking for a cure in the name of profits to be made on moderately effective therapies. Imagine the profits to be made if one company were to discover a cure, patent it and market it!
    The modern tendency to rail against defense spending in the name of furthering this or that program ignores the fact that far more money is spent on social programs than on defense. While as my disease progresses and I face a status change in the near future from RRMS to SPMS, I find it hard to believe that the majority of researchers are not earnestly trying to find a cure.
    There are problems with our health care system, most of which have been created by interference by the federal government, especially since 1965, but I am skeptical of the efficacy of spending even more money at the expense of national security on research that may or may not yield a cure.

  • Marc Stecker-Wheelchair Kamikaze author
    5 years ago

    Hi Laurie, no worries about the typos, I think most people reading this can relate. If typing is becoming a real problem, you might want to consider voice recognition software, which is what I use (Dragon NaturallySpeaking).

    In regards to pharmaceutical companies and medical research, I completely agree with you that as public companies pharmaceutical firms have every right, and even a fiduciary responsibility, to make as much money as possible. Therein, though, lies the problem. Multiple sclerosis has become a multibillion dollar a year industry, and in actuality very little research is being done to search for the root cause of the disease, which Of course is necessary to find a cure.

    So much money is being generated marketing immunosuppressive drugs that the profit motive dictates that the status quo not be upset. I’ve spoken to quite a few MS researchers who have vented their frustrations at the fact that many promising potential therapies never make it out of preclinical studies because they simply don’t offer a tremendous profit potential. The gap between the laboratory and clinical trials is referred to as “death Valley”, and under the current model only pharmaceutical companies have enough money to Shepherd promising treatments across that void. Why would a for-profit concern spend the millions of dollars necessary to develop a drug or treatment that has little potential return on investment? The number of potentially effective treatments that die on the vine is staggering, particularly off patent drugs that can be repurposed, natural remedies, or genuinely innovative approaches that might threaten current business models.

    Researchers need to put food on the table and pay rent, just like anybody else, and thus wind up working on “me too” projects that very rarely break new ground. The problem lies not with the pharmaceutical companies themselves, but with the medical research system as it has evolved over the last 30 years or so.

    I have to say that I completely disagree with your take on interference by the federal government. In fact, the federal government hasn’t interfered enough, and it’s the lack of federal funding to organizations like the National Institutes Of Health that have placed almost all mid and late stage research into the hands of the pharmaceutical companies, who don’t have much motivation to upset the status quo as it now exists for many diseases.

    Not sure what your reference to 1965 refers to, but I’m guessing it has something to do with Medicare? Medicare (and Medicaid) has been one of the most successful social programs ever devised in this country, and have saved countless lives and eliminated the misery and desperation felt by the the many patients stuck without proper healthcare before Medicare arrived. Warnings of gloom and doom accompanied the passing of Medicare legislation, none of which ever came to fruition.

    All those who yearn for a return to the “Golden age” of America, the postwar years spanning 1946-1963, always seem to forget that during those years the government was quite active enacting social programs and public works projects. The power grid was tremendously expanded, our national highway system was built, New Deal programs were brought to maturation, and civil rights legislation righted some ghastly historical wrongs. That Golden age was also marked by a truly progressive tax system, one that has been largely abandoned.

    When properly funded, government medical research groups like the NIH have developed truly revolutionary treatments and procedures that have saved countless lives. As I previously said, I have nothing against the pharmaceutical companies engaging in practices that are perfectly legal. However, many of those practices need to be curtailed. Our medical research model is beyond dysfunctional at this point. Yes, we must allow innovative pharmaceutical companies to reap the rewards born of their innovation, but as it stands now there is actually very little competition (the hand of the free market) amongst these companies. Did you ever notice that almost all of the MS drugs are priced within several thousand dollars (on an annual basis) of each other? Believe me, not a coincidence, and just another sign that massive structural changes are imperative.

  • Marc Stecker-Wheelchair Kamikaze author
    5 years ago

    Again, thanks to everyone who is commenting. This disease can often be so unrelentingly ugly, but this side of MS seems to be fastidiously hidden from the public at large for reasons I can’t really understand. Yes, it might make them uncomfortable, but they should be made to feel uncomfortable. I think that’s the only way any real progress at curing the disease will ever be made. People must be made to feel disgust at the status quo.

    I feel for all of you who are relating stories of your struggles with this beast. We are a band of brothers and sisters, and my greatest wish is that the ties that bind us were of a much more pleasant variety.

    Sue, as for how I manage in bathrooms, so far I am still able to take care of business, so to speak. Things are getting harder and harder in that regard. It’s not difficult to see that if things don’t change for the better sometime soon they will be outside help in my future. My wife can only be expected to do so much.

    I haven’t done any traveling in quite a few years, so I haven’t run into the airport problem. I’m surprised that there aren’t family bathrooms, what to people with young children do? A father certainly can’t be expected to send his three or four-year-old daughter into a ladies room, and he might not be comfortable bringing her into a men’s room. I have found that even some of the most supposedly handicapped accessible facilities can be severely lacking. You might want to contact your Congressman and voice your complaints. I’ve actually found mine to be quite responsive.

  • aaosnana
    5 years ago

    Marc, Thank you, thank you, thank you for shining a light on how truly ugly MS can be. I mentally cringe every time a new celebrity is diagnosed with MS, then is featured on Dancing with the Stars or applauded for how well they manage their MS. I’m not trying to minimize the seriousness of their form of MS – without significant progress in the treatment/cure of MS, they may very well wind up with the more aggressive form, also. But at that point, they will probably no longer be featured as the face of MS. Greatly appreciate your realistic posts about MS. Keep up the good fight!

  • Sue
    5 years ago

    Marc this is a great article. I’ve been watching you on line for awhile. I was not in a wheelchair. Now I am.
    How do you manage in bathrooms? When we travel I am in a transfer chair because my left side doesn’t work. I have found that airports are not required to have family bathrooms. My husband has to go into the ladies room to assist me.. Is there any way we can make a change in the ADA laws?
    You have lots of followers. Can we break down some barriers?

  • Sue
    5 years ago

    I’m also sick of the smiles. My brother died in a coma after living with progressive m s from the age of 22 through 38. My sister needs a lift to get from her bed to her wheelchair. I can still walk 15 feet with my walker. My left arm and legs are just there. Yet I take monthly infusions of Tysabri, wondering if it will kill me. The doctor charges $50,000 a month, but medicare only pays $3,800. Would that nearly $50,000 a year be better spent on food pantries or education. The doctor and my husband tell me it doesn’t work that way.
    We, with progressive m s remember, life with real smiles. Now we have to suck it up, and falsely smile when people tell us that we’re inspirations. We’re not depressed; we’re mad. We’re crazed that drug companies keep taking advantage of our desperation for any hope.

  • MS X4
    5 years ago

    I enjoyed that Marc. I find the same thing within my family. My Mom has had cancer 3 times, RDS and 2 heart attacks so she assumes she knows exactly how I feel and hurt. She’s 80 and is in a lot of pain but I don’t think she even slightly understands what I go through. I just constantly hear that you have to fight it so your taking pains meds it shouldn’t hurt that bad. If you would get out of that bed. I am at my wits end. Does anyone else understand that here. This is my first post so it may not even be in the right place. I was a physician for 5 years but had to quit when my hands stopped working and I couldn’t stand for longer than 30 minutes at a time without having extreme muscle spasms that would just contort me and my neck. I sometimes think it’s even more frustrating to me because I am a Doctor. People would come to me and I would fix them but I can’t fix this and I do what I can do because there are so many thing I can’t do anymore. I can’t drive bc I’m losing my sight. I can’t play ball with my boys, I can’t coach them anymore. That’s what I have become the things I can’t do. Does anyone understand this or am I rambling.

  • ShinyCat
    5 years ago

    I understand exactly where you’re coming from. I have difficulty with math and spelling, both of which I used to compete in and have tutored. I can’t drive more than about twenty minutes without turning into a trembling wreck, when I once considered long-distance trucking as a fall-back career. I spend most of my days effectively confined to my bed, some of them with my brain too fuzzed to even read the books I treasure. Without cable and the internet, I would have done something foolish to myself long ago. But I have found a wonderful community of supportive people online who understand where we are coming from, on boards like this, on Twitter, and on Facebook. Having (virtual) ears to vent to who understand exactly what you are talking about helps SO much!

  • Donna Steigleder moderator
    5 years ago

    Well said Marc! As a caregiver to someone who is now totally unable to do anything for himself, I get so frustrated with seeing the picture of those who are relatively able body represent the condition or speak out for the traumas they suffer. Fortunately, they have no idea and I hope they never do but the support for people like you and my husband by the industry or the government is almost next to none. Once you get to the progressive stage, they seem to just say, “too bad” and move on. Thanks for sharing the ugly truth and I will continue to share the caregiver side of it as well. If more people speak out on this side of the story, maybe more will be done. God bless.

    Donna MSCaregiverSharing

  • Marc Stecker-Wheelchair Kamikaze author
    5 years ago

    Thanks, everyone, for the thoughtful and incisive comments, and for the kind words about my essay. I only hope its message gets through to the people who can make a difference, those who perpetuate the mass media message that MS is an inconvenience. I am quite frankly shocked at the response this post has generated, especially since I wrote it almost 3 years ago. A big “thank you” to the folks at MS.net for bringing my essays back to life and to a larger audience. I am grateful for and humbled by the response.

  • murphy
    5 years ago

    Artanis12: Sorry for your recent diagnosis! I pray you will go the journey as well as can be expected!
    To speak with others who actually have MS, please go to: MyMSTeam.com This is a website where people with MS and their loved ones communicate with other MSers. See you there! Best of luck!

  • Artanis12
    5 years ago

    Thank you so very much! I’m only recently diagnosed, but perhaps because I’m so much older than the usual age of diagnosis, I have no use and NO TIME for all the puppy farts and rainbows that the MS community – doctors and sufferers included – seems intent on presenting to the world. Maybe your essay resonates so strongly because just yesterday I read a supposedly feel-good piece that was all about SMILING through it all. Aside from the fact that I despise being told to smile – women and smiling don’tcha know, I wonder how much help for the cause of finding a real cure for MS, smiling really does us. Smiling all the time may make you feel good that you are decreasing the discomfort of family and strangers – although how a person can be chipper all the time with any of the other very real and massive indignities that this disease can inflict on one – is beyond me. But smiling all the time is likely to make people not take what is happening to us seriously, leading to the endless variations of, “Well, I know someone who just hasn’t given in and keeps going and running or biking or…..”. JUST STOP. Continuing to focus on the mildest course of the mildest form of the disease helps NO ONE, especially those who don’t even get that small grace. And quite frankly, if I hear another MS’er talk about how THEY aren’t “giving up”, I’m going to scream. What the heck does that mean anyway?

    So thank you Marc, for your writings. YOU are the inspiration and you do us all a great service for your clear, authentic voice. I’m not where you are, and may never be, but I have never had delusions of invulnerability, not as a young person, not later as I watched my mother wither and die from ALS, and certainly not now, as I face down my own likely fate, so your mindset is more my own. You are angry and brave and depressed and happy, grateful and pissed, and the whole mish-mash of the emotional stew we live in with MS, and you don’t SMILE through it all, and you don’t apologize for it.

  • Cari
    4 years ago

    THANK YOU ~ Artanis12. I was diagnosed 16 years ago. I am a divorced Mom of two very active teenagers with limited assistance from their father. (His idea of ‘helping’ is telling me what I have to do) I am completely sick of the trite over used adages and basic T-shirt slogans that are supposed to exemplify M.S. and how those of us who have it, are supposed to deal with it.
    If I see, or have someone foist upon me another T-shirt or picture saying, “I have MS, but MS doesn’t have ME” or “Keep S’mylein” I will probably snap. Instead, I am supposed to smile at their feeble and misguided attempts at understanding what it is like to have MS as I maneuver through my day deciding what needs to be done, what can wait, what can be delegated, and what can be ignored.
    And … “The Spoon Theory”…. Any one who thinks of sending it? Please JUST DON’T. The only thing I can think of doing with those dang spoons? I just want to throw them at the people who think that our energy levels are tied to a collection of inanimate objects such as spoons.

  • fedupandconfused
    5 years ago

    Thanks Marc a fantastic write up as usual. I get frustrated with people’s unwitting ignorance borne by the fact very little is known about MS they assume MS is the same for everyone and don’t realise there are various forms and varying degrees it can affect people. I agree the media doesn’t help either as it sanitises the way in which it depicts the disease added to this I guess we are all guilty of down playing the symptoms in order to not gain sympathy or pity. Ironically this brave posturing by MS people (including myself) has resulted in MS being seen as insignificant in terms of its impact on everyday life and how it changes our quality of life in one way or another. All of this is exacerbated by those in the medical fraternity who for whatever reason choose not to listen to the very MS patients who own the disease instead telling them their symptoms are imagined or not painful and indeed allowing patients to go undiagnosed for years due to lack of *evidence*. Not only is MS damaging physically but mentally it is equally as destructive so I guess we need to look internally into our community and the MS medical professions before we can begin to expect the general population to understand where we’re coming from.

  • murphy
    5 years ago

    March 8, 2015 at 7:39 am

    I, too, get tired of how MS is white washed. When I was first diagnosed the major MS organizations made like this disease was nothing and it doesn’t help that many of us do not have outward symptoms. So I asked each one of them, “who is going to even consider donating to research for a disease as harmless as MS?” After all, your articles say having MS is next to nothing”. I was even told MS ‘wasn’t a painful disease’ and that it ‘has no effect on lifespan’. Tell that to the MSer who chokes everytime they try to eat and the MSer who has muscle spasms all night and falls around all day! Thank you for your article!

    Reply

  • murphy
    5 years ago

    I, too, get tired of how MS is white washed. When I was first diagnosed the major MS organizations made like this disease was nothing and it doesn’t help that many of us do not have outward symptoms. So I asked each one of them, “who is going to even consider donating to research for a disease as harmless as MS? After all, your articles say having MS is nothing”. I was even told MS wasn’t a painful disease and that it had no effect on lifespan. Tell that to the MSer who chokes everytime they try to eat and the MSer who has muscle spasms all night and falls around all day! Thank you for your article!

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