Sunday, December 5, 2010

The Frustration Machine

Rubik's Cube

Image via Wikipedia

I recently posted a piece titled "Surfing an Emotional Tsunami", in which I talked about the overwhelming torrent of emotion that comes bundled in the Multiple Sclerosis package (click here) . One astute reader commented that I had left out a very important feeling with which he often saw his MS stricken wife struggle: frustration. And, of course, he was absolutely right. The more I thought about it, the more it became clear to me that frustration plays such a large role in the experience of MS patients that it deserved a post of its own. MSers experience frustration on so many different levels that it's presence can almost be taken for granted, like the air that we breathe. Unlike life-giving oxygen, though, frustration can be suffocating, and in fact can be the seed of many of the other negative emotions that plague MS patients: fear, anger, guilt, desperation. Frustration strikes on many fronts, and MS patients battle it in its myriad forms over and over each and every day.

The disease itself frustrates all that it touches; patients, their loved ones, and the doctors who tend to them. The infrastructure that has grown up around the disease, a multibillion-dollar a year engine for which MS is the fuel, generates its own set of gargantuan aggravations. And the world itself, in which an increasingly disabled person can start to feel more and more alien, holds perhaps the most implacable frustrations of them all.

Let's start within the patient, and work our way outward. Upon diagnosis, patients are told that we have an incurable disease (frustration of the terrifying variety) that, despite over 150 years of research, medical science barely understands (mind-numbing frustration). Our immune systems for reasons unknown have gone on the fritz, we are informed, and have become cannibalistic, slowly devouring our own central nervous systems (petrifying frustration). The more questions we ask, the less clear the picture becomes, and as questions beget questions, the mind begs for answers that simply aren't there (intellectual frustration). We are trapped in a medical Rubik’s cube, and despite decades of endless turning and twisting, the goddamned colors refuse to line up.

As the disease progresses, its attendant frustrations, often suffered in silence, progress right along with it. The nagging disturbance of a numb or weakened limb slowly morphs into the outright horror of a once faithful leg or arm that has become totally dysfunctional, more a hindrance to be overcome than the helper that it used to be. The frustration I feel when I am forced to use my still functional left arm to physically place my now useless right arm into some out of the way position is indescribable. Despite my never-ending attempts at ferociously willing the damned thing to move, that arm becomes ever more and more unresponsive, as if it were part of a corpse grafted onto my body.

As physical dysfunction spreads, no amount of willfulness is able to impede its momentum. The frustration involved in watching oneself whither away is simply beyond words. When medical science first recognized MS as an identifiable disease, one of the earliest names given to the condition was "Creeping Paralysis", a discomforting label to be sure, but one that much more accurately describes its horrors than any of the medical jargon now used to conveniently camouflage the realities of Multiple Sclerosis. Million dollar words like spasticity and paresis do nothing but dress up in ludicrously antiseptic scientific jargon the fact that I can't move my fucking arm or leg. I'm not a case study in a scientific paper, I'm a human being with creeping paralysis. Frustration…

Each of the physical losses inflicted by the disease frustrates the execution of everyday tasks that in the past never even warranted a second thought. I very often find that my losses reveal themselves in the countless simple acts that it takes just trying to get dressed and out the door. Can the word "frustration" even begin to describe the emotion I feel when I discover that some of last year's difficult tasks have now become damn near impossible? When last December's barely winnable struggle to put on my right sock has now become an unworkable nightmare? When such inconsequential modern conveniences like the zipper on my favorite leather jacket have suddenly been transformed into infernal devices seemingly designed specifically to illustrate just how brutal a toll this disease has taken on my body? Certainly, there must be a mightier word, but for now frustration will have to suffice.

For those who love and care for us, watching the disease’s effects from the outside in is its own particular brand of torture. Though I don't have any children, I can only imagine the helpless anguish a parent must feel watching their child struggle with the disease, no matter the age of the parent or the child. The only personal experience I have that might begin to compare would be the gut wrenching desperation I felt as my beloved Labrador Retriever Stella (click here) succumbed to cancer. Though I know such a comparison might make a mockery of the parent-child bond, it's the closest I can come, and at least I could take some comfort in the fact that my canine friend had lived a relatively normal life span. But there can be no such comfort for a parent watching their adult child, the essence of their own flesh and blood, gradually become diminished. Can a young son or daughter's immature mind even process the sadness, anger, and frustration of having a dad who can no longer play catch, or a mom who needs to be mothered? And those spouses who decide to stick by our sides, dauntless spirits all, navigating the treacherous path laid out by MS, not out of necessity but by sheer love and devotion, how to define their courage? I've been given no other choice but to follow this road, but for my wife Karen exit ramps abound. And yet, by the grace of all that is good, she remains. Somehow, she remains.

Conversely, the frustrations felt by those who love us can in turn incite yet different shades of that same emotion deep within we who suffer from the disease. Despite mutual attempts to shield each other from the hurt, it's plain to see that our physical and emotional pain is causing those we love distress, and like the chain reaction that generates an atomic blast, frustration from all sides collides and mutates, simultaneously leaving too much said and too much unsaid, for the region between "dwelling" and "denial" is narrow and almost impossible to navigate. Every day small talk can become unbearably trivial, yet speaking of nothing but disease is poison for the soul. Phone calls from the concerned can come too often, or not often enough, and social invitations become objects of synchronized dread and delight. Yes, I would love to meet you at the café for coffee, but there is this thing about the zipper on my coat, and I don't know if next Tuesday will be one of those days that I'm simply too tired to get out of bed, and if it rains my wheelchair becomes as useful as an anchor. Frustration…

Many times simply being a member of the human race in a world that naturally caters to the well can conspire to frustrate at every turn. I flip on the television and see commercials hawking products that not long ago might have filled me with consumerist desire, but now are almost comically useless to me. What am I going to do with a shiny new Jaguar? Watching a sporting event and marveling at the incredible physical talents of the athletes involved, I sometimes can't help but reflect on the fact that the man making that impossible catch is doing it with far more ease than my increasingly futile attempts to simply put one foot in front of the other. Lovers delightfully snuggling on a park bench, that business suited jackass blindly walking through a crowd oblivious to everything but his blackberry, the single eight inch step that keeps me out of countless shops and restaurants, the everyday problems with office politics and petty relationships that so consume the healthy but, through the lens of far greater troubles, have now been revealed to be nothing more than trivial distractions. Frustration. Never-ending, unrelenting, heartrending frustration…

On an entirely different plane are the frustrations large and small of becoming trapped in indentured servitude within the universe of modern medicine, as a chronically ill patient must be. It didn't take all that long for me to go from being blissfully ignorant about some faraway malady called Multiple Sclerosis to the shocking realization that the gleaming miracle machine commonly presented as 21st-century medicine is simply a tremendous ruse. Despite all of its high-tech wizardry and and the considerable brainpower of its highly trained physicians and healthcare practitioners, modern medicine is first and foremost a fantastic engine for generating astronomical wealth for a gaggle of corporations, often at the expense of the very patients it purports to benefit. In many ways it's a money machine that feeds on sick people. Multiple Sclerosis, because it has revealed only enough of it secrets to make its treatment a highly profitable endeavor, is almost the perfect disease to unmask the sleek veneer of modern medicine and reveal the unsightly leviathan within.

For those "lucky" enough to have one of the more treatable forms of the disease, the medicinal remedies offered make all too real the expression "pick your poison". None of these medicines do anything at all to address the still unknown underlying cause of Multiple Sclerosis. Instead, by modulating or suppressing the intricate and poorly understood human immune system, they temper the paralyzing attacks suffered by those with Relapsing Remitting Multiple Sclerosis, without doing a damn thing to cure them.

These drugs do increase the quality of life of many of those taking them, as fewer relapses certainly make for a more pleasant existence, but at best the evidence shows that they may slow down the eventual progression of the disease, but they certainly don't stop it. As an added kicker, all of these medicines carry with them troublesome side effects. The least effective "Disease Modifying Drugs" commonly make those taking them suffer from "flu-like" symptoms, which, roughly translated, means they make people feel like shit. Better to feel like shit then suffer from paralyzing MS relapses, but certainly no panacea. Furthermore, these drugs only help about one third of the people taking them. How's that for frustrating?

The newer, more effective (and more costly) drugs profoundly impact the workings of the human immune system, and carry with them the possibility of some terrifying side effects, including brain infections and cancers. None are ever trialed for more than two or three years, so their long-term effects remain unknown, but patients are expected to rely on them for a lifetime. What affect will disabling half of my immune system have in five or 10 years? Well, we don't know, but just sign on the dotted line and let's hope for the best. Frustration…

Those like me, with the progressive forms of the disease, who don't suffer "attacks" but instead experience a slow and steady decline, are left with the choice of doing nothing, practically assuring a gloomy outcome, or partaking of the above-mentioned remedies, with little hope of experiencing the benefits realized by the folks who suffer relapses. Since I personally find the idea of doing nothing anathema, I've subjected myself to the full gamut of therapies and concoctions offered up by modern medicine, despite the knowledge that chances are they would likely do me no good. Indeed, this has been the case. I've received no benefits from these shots in the dark, and rather than simply do me no good, some of them have actually worsened my condition. Frustration, self doubting, 20/20 hindsight frustration…

And now we have the hope of CCSVI, the so-called vascular theory of MS. After decades of largely fruitless research focusing on the immune system, there comes the stunning revelation that abnormalities in the veins that drain the central nervous system may play an integral part in the MS disease process, and perhaps might even be the long-sought cause. Even if not the cause, anecdotal evidence suggests that at the very least, the clearing of these abnormalities through the use of a relatively simple, minimally invasive surgical procedure may relieve some of the symptoms borne by those with the disease.

Instead of the eager cooperation one might expect to find between the various medical disciplines required to fully test the theory, we get an eruption of the equivalent of a medical food fight, with researchers, physicians, and politicians brawling over how and even whether to test the hypothesis. Patients, at last energized by an intoxicating dose of hope, are caught in the middle, looking on incredulously as academic and bureaucratic arguments delay the relatively simple trials that would be needed to prove or disprove the theory. If there were pharmaceutical fortunes to be made from CCSVI, you can bet your ass that sophisticated trials would have commenced long ago. But no, corporate profit potential is lacking, and so it has been left largely to the patients themselves to foment what could be a medical revolution. Frustration. Angry, seething frustration…

How to deal with the many hued variations of frustration met by those dealing with Multiple Sclerosis? If only there were an easy answer, a meditation or incantation that would simply make it all fade away. But no, we must be steadfast through the storm, letting neither the past nor the future cloud our experience of the present. All of the emotions engendered by Multiple Sclerosis, frustration included, give every one of us dealing with the disease the perfect right to curl up into a ball and bemoan our fates in a deserved orgy of self-pity. And perhaps it's best that on rare occasions we allow ourselves to do just that, to let loose with a guttural wail of anguish. But for the vast majority of the time, we must steel ourselves to take control of our emotions, to experience each day moment by moment, making the numberless conscious decisions that allow us to not only survive but to thrive in the face of undeniable and treacherous adversity. We must not deny ourselves the right to contentment, for contentment and even happiness must be created by every individual from within, attained by a total immersion in the moment, and finding that small kernel of good always contained in the now. We cannot deny our feelings, but we can work with them to discover our own very personal sense of ease, frustrations be damned.


  1. Good summation Marc.

  2. Marc,
    I sense that this post was your "guttural wail of anguish". As painful as it is I guess it's healthy to stare this thing in the face once in a while, as long as we don't let it get the best of us. I think everyone needs to reread your last paragraph a second and even a third time.
    Great post as usual!


  3. Marc - I agree with most of what you are saying here, and as I am having a "bit of a spell" of pain and fatigue and vision stuff, I share the frustration thing.
    But don't forget there is big money tied up in CCSVI also. So many for-profit clinics are gathering in millions for doing a treatment and then sending people away to cope on their own. It's a huge money spinner for them and while you can fault big pharma (and I'll agree with you - especially Teva, who makes my Copaxone, who has been taken to court for price gouging, found guilty, agreed with the verdict and then kept the prices EXACTLY the same as they were), big surgery has its own blame to wear. There have been SO many tests and surgeries and procedures done of all sorts that were of no clinical benefit and caused harm that cost the healthcare systems and the poor patients money and their lives. I'm not talking about CCSVI here, necessarily, so don't blast me, people, but I Am talking about the surgery once used to redirect blood for stroke patients, about total mastectomies, about the test that show so many false positives that people go through unnecessary surgery to "treat" (mammograms being one, prostate testing another). Big medicine has LOTS of interest in the CCSVI thing working, you bet. And they are every bit as grasping and venal as big pharma.
    So I share your frustration in many directions. But I'm not willing to accept one money-sucker as inherently better than the other.

  4. Marc, your post has me sobbing as my frustration has been overwhelming and your writing so eloquently echoes my life of late. As a PPMSer I have been struggling with moments fraught with tortured anguish. Trying not to pass out as I stand to try and zip my jacket, realizing I can't manage it, calling upon my husband to assist and then collapsing into my chair. How is it that a ZIPPER can defeat me? Personal grooming, which was meticulous in my past life, has taken a back seat as I see if I can eke out another day avoiding the shower which would leave me so exhausted the day is shot to hell. I want to scream and shout and thrash around on the floor like a toddler at times, but my ravaged body can't get down on the floor and most certainly wouldn't make it back up. I try and stay mired to each moment as to look ahead scares me. I have lost so much ability -- I cannot let my mind go too far ahead of me. I try mightily each day to hang on to the beauty and wonder of life, the love of my husband and daughters sustain me. I have one lovely friend who simply listens to me without false cheer. The rest are either "fixers" or are so uncomfortable around me that it saps my energy. I love them but have to pace my visits with them. Who would have thought social interaction would have to be so measured and planned?
    Thank you, Marc -- bless you -- my tears have stopped for today.

  5. Marc, your frustrations are mine too. I am thinking about stealing your text, translate into my own language and try to get it published here in Sweden.

  6. Marc, thank you for your post on MS and frustration. So true.
    Sometimes I laugh when recurring problems crop up again and again (dropping things, etc.), sometimes I cry out in frustration (my startled wife when home does not prefer when I do that), sometimes I cry (I prefer to laugh) - MS and frustration are like that.
    Very much enjoy your videos. Inspiring.
    Thank you.

  7. Frustration is not powerful enough. How many levels of The Frustration Game can you complete before frustration takes it toll?
    Sure dont think about the past, dont think about the future, because the present is more than enough to deal with. Getting in the shower for me usually produces a catharsis. Its like a 20 mile marathon. I actually sweat. Getting out of bed, putting on pants that end up chaffing my ass by days end, typing with fingers I cant feel, looking out into the universe with eyes that bounce like a Michael Jordan fast break basketball, legs so stiff they resemble two morning erections, or maybe its trying to get from the car to the scooter, feeling like a stroke victim, or maybe its having a cup of soup that by the time I am done puts my symptoms into major flare due to its warmth? Frustration?










    at sea


    or just plain fucked up?

    sorry for the negativity Kamikaze just felt like getting it off my chest.

  8. Marc,
    Thanks again for reminding me I share this demise with so many other thinking creatures... Fortunately, despite all the frustrations impacting me today, there was a spectacular life I got to live 20 plus years ago and I still catch glimpse of beauty in this world even today, sometimes. When I read your blog, I get to think about our present situations and I then often think back to "Lucy" and all our human trials and tribulations over time. It's amazing where our minds drive us... Keep up your balanced account of our MS world. I hope we can compensate for some of the frustrations we deal with... Rick in Olympia

  9. Hats off to you once again Marc. It is amazing, although it shouldn't be, how many of the same frustrations MS patients share. The damn zipper problem, managing to stay upright while showering only by hanging on to a wall-mounted bar and then using it to swing strategically outwards, all the while worrying about falling and creating a bigger problem for oneself and one's family.
    Worse is the knowledge that today's difficulties will be tomorrow's impossibilities. Worst of all is the nagging thought that I should be grateful for only needing half-an-hour to put on a sock because next year I may not be able to at all, in which case I may look back nostalgically on that half-hour. I sometimes feel like a salami that grows shorter and shorter every year as another piece is cut off.
    As someone who is an incurable optimist and after a career in international aid work where I witnessed people in much worse situations, I try to soldier on, but as you point out, the endless compromises, endless advance planning and endless petty humiliations add up to ENDLESS FRUSTRATION. But thank you for articulating it so well for so many of us.

  10. Beautiful post.So true.

  11. Miyagi (not name just thought)December 7, 2010 at 12:34 AM

    Marc, you're writing is great because you're being you. I wish more people could just open up, let go and be themselves.

    I'm really just rambling here because I wanted to respond and offer support but dont really have anything to say that I think would make a difference. I dont have MS but a family member has and I've had to shield her from my thoughts.

    I'm highly strung at times and without knowing it you've helped me balance things out a little, doesn't always work but you remind me that even online, sometimes there are real people behind the screen.

    I'd love to give you a big positive talk but Im sure you've heard it all before. It may have been accidental but you've been a great role model. I probably agree with 90% of your posts but I dont know If you'd agree with half of mine.

    Im completely lost so can only imagine your thoughts.

    OK, us Scots don't rate American humor, your comedies are complete kack but as a form of self therapy I want to read a funny uplifting post, you've done it before, I almost thought you were at least a canadian.

    You need a lift and for what you've done for the community you deserve one. Have a laugh at UK humor, we laugh at Americans.

    Seriously though, whatever business is going on behind the scene, your business is you and your family, you need some you time.

    take care

  12. Marc - I think this is your best post yet. At least for me, as someone with the progressive form of the disease, the ultimate frustration is knowing my body is in decline and there's not a damn thing anyone can do about it. The CRAB drugs didn't work. Angioplasty didn't work. Off label drugs didn't work. This is the height of frustration, but to succumb to it is to give up and I, like you, refuse to do that.

    So I do as you do - try to live in the moment, taking joy and pleasure from small victories, enjoying my family and friends, and doing what I can to improve my days and delay the decline. I meditate. I exercise (as much as I can do). I sing, I laugh, I write. I participate in life. To do otherwise is emotional suicide.

  13. Creeping Paralysis Indeed!

    I finally have the right name for what I have experienced over the last 18 years of my life.

    Marc, thank you for an excellent post.

  14. Thanks again Marc for hitting the nail on the head. I wish more people I knew would read your blog and clue into what MS is really like. I suffer quietly and never really let it be known. The frustration at times is the worst. Thank-you again for being an outlet for what we all feel at times.
    Take Care!!

  15. Anonymous-thank you, anonymous.

    Charlie-yes, I do suppose this was something of a wail of anguish, and as I said in the post, we are all entitled to such a wail, every now and again. I hope that reading of my frustrations will help others suffering from the same feelings to understand that they're not alone. And, yes, that last paragraph is an important one…

    Dabble-I certainly agree that there is big money tied up in CCSVI, but unfortunately the money to be made is spread out among many clinics and physicians, not concentrated in a single corporate entity. Over 70% of the medical research in this country is funded by Big Pharma, because the profits to be made from a single patented drug are tremendous. Until the CCSVI theory is proven correct, and accepted as a viable technique for relieving MS symptoms, I don't think any medical device company will sink money into the development of stents and other tools designed specifically for CCSVI treatment purposes, or fund any CCSVI trials.

    Don't forget, many of the early drugs (the interferons, Novantrone, Cytoxan) used for MS were not developed for MS, but were repurposed for use on MS patients. Therefore, CCSVI trials face the hurdle of proper funding, and will likely need to be funded by the patients themselves (just as Dr. Mehta's study in Albany is currently structured). Of course, the slack could be taken up by the MS societies, or the government, but they've chosen to fund academic rather than treatment studies. Let's face it, our medical research model is seriously flawed, and it's not getting fixed anytime soon…

    Bite-very well said. Our physical struggles can be so exhausting that they make the mental part of dealing with the disease that much more troublesome. Such a vicious cycle…

    lennart-no need to steal, you can certainly borrow my text and translated into Swedish. I would appreciate your directing people to my blog, though, and informing me of where you publish the essay. I'm gratified that you think so much of my words that you would like to share them with your Swedish counterparts.

    Erik-yes, laughing, crying, shouting out, sometimes doing all three at once. Quite the complicated game we play…

  16. Greek-feel free to unload your troubles on me anytime you need to. It takes one to know one, and your list of MS adjectives pretty much sums it up…

    Rick-yes, memories can help sustain us, and there is indeed beauty to be found even in unattractive circumstances. Thinking back to Lucy and our long-ago ancestors does serve to keep it all in perspective. In the context of geologic time, we are merely specks, grains of sand to be carried away with the winds…

    Anonymous-thank you

    Jón-we do share so many of the same problems. Socks, zippers, and showers seem to be daunting bugaboos for us all. The certainty of increasing disability can be used to keep yourself rooted in the moment, but sometimes mental discipline failed us, and creeping paralysis leads to lightning bolts of horror. But, as you say, we've no choice but to soldier on…

    Laura-"yes" right back at you.

    Anonymous-thank you for the kind words.

    Ed-thanks for the kindness, and wishes of laughter. I much enjoy British humor, and grew up on a steady diet of Monty Python and The Young Ones. Despite the tone of this particular post, I still do plenty of laughing, so please fret not for my mental state. The last few months have been kind of rough, but I've not lost my sense of humor. Some lighter posts will make their way onto the blog soon, I'm sure.

    Ms Andisue-sounds like you have a pretty good handle on things. Thanks for the praise, and the commiseration…

    Ellie-Creeping Paralysis really struck a chord with me, also. Nothing like telling it like it is…

    Teagan's mom-I think we all suffer quietly, for the most part. This blog does allow me to give voice to some of that suffering, and sometimes serves as a way to publicly blow off a little steam. When writing posts like this one, I sometimes worry that they may be venturing too far into the darkness, but I think knowing that there are others groping in the void along with you makes the journey a lot less lonely.

  17. I think this is by far your best post. Many non MSrs have no idea what & how we suffer daily. You have put a face on our quiet daily obstacles..socks, zippers, showers, beds, writing, picking something up, TYPING..these daily tasks are my nemisis! I too wish more people could/would/should read read this to get a better idea of our "lives". Kim

  18. I like the name creeping paralysis, it is a better description by far. In my case I could no longer feel my legs, my right arm can move very little hand attached to it curls and the fingernails stab my palms during a tremor. I cannot adjust myself in my chair anymore. For me I beg for it to end. But I know I am still to healthy for that. But you can't help but wonder. It is the length of the days in waiting. I have tried everything that made any sense and yet nothing has ever made much difference now that it's frustrating! Thousands of dollars that may as well been converted into toilet paper. At my point I have handlers that pick me up and put in my chair and later put me back in bed. They feed me, they clean me, and they wipe me. It is a pretty humble feeling to reach this point. I remember the days of getting dressed and taking 20 minutes to put my shoes on. Then I would grab my walker and get out to my van to head for frustration elsewhere. This is a very good article and bite my elbow is on the money. You get tired of crying and you begin to beg for sweet release. All in due time you just wonder how much time. I am good, I have made my peace with this damn disease. I had many friends waiting for me and nine dogs waiting for me at the rainbow Bridge. The only thing I worry about is that my wife will be okay.a frustration is never ending. I cannot regret my days with this illness, I haven't gave it a good go. I don't really know how long I've had the first signs may have been at age 16, I am now 55 so if that is correct I am okay. About 2003 I pretty much quit walking so I have done okay. And I get to live at home. So I am in control of what is important. Often there is sadness in reflecting, but there can't be joy. I cannot regret a lot so that is good. I don't have a lot of faith in the liberation procedure, as time goes on it looks less positive. I will enjoy the small things and give in to the things beyond my control. It becomes easier in some ways as you can do less. I will not surrender to a nursing home, I was in one or two months there is absolutely no way I am going back in one. If you still have a mind and a will, do not go there. You will need a lot of support to stay at home but it can be done. And voice recognition software is very irritating! Lately my left index finger is more like a crescent moon so typing is impossible. You just go on as best as you can appreciate that your mind remains capable of such thoughts. Never give in!

  19. I think I preferred name creeping paralysis to MS. Good article. Bite my elbow, good comments all know is I am tired of this disease. And of the remaining parts that just don't work anymore. Wouldn't it be wonderful to just have a day, 24 hours to be free of this thing.

  20. Thanks again for stating the dynamics of M.S. frustration so well. You are a powerful writer and an impressive fighter. As a fellow PPMS guy, it helps a lot to see what we go through expressed as well as you do. Hang in there, buddy, and don't get too discouraged.

  21. Big Bubba-I just realized that blogger has instituted a spam filter, and your original December 13 post was for some reason caught in it. I've retrieved it from the spam folder, and it now lives on this page. Sorry for that.

    Your comment is very moving, and sums up the predicament we face in a very guttural way. You are indeed a fighter, and despite the ravages of the disease, you haven't been vanquished. Wishing you serenity until you find your release.

    Chris-thanks for the encouraging words, as I'm sure you're aware the psychological as well as physical aspects of this disease are a daily battle. As with any battle, some days are better than others…

  22. Marc - you are so talented and your words touch the soul of so many of us with MS. Thank you for so eloquently verbalizing all the frusterations that come along with either having MS or loving someone who does. All the best to you <3