Sunday, November 14, 2010

Surfing an Emotional Tsunami

Rembrandt's The Storm on the Sea of Galilee, s...

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Dealing with a chronic illness like MS is a multifaceted affair. There's the physical side of things, each patient having to tackle their own particular hodgepodge of the wide range of symptoms in the Multiple Sclerosis repertoire. Cognitive dysfunction, fatigue, sensory issues, muscle weakness, spasticity, neuropathic pain… the list is almost endless, or at the very least can certainly feel that way. Many of MS's physical manifestations have some sort of medical remedy, with varying degrees of effectiveness, most often in the form of a pharmaceutical product. There's Baclofen for spasticity, Neurontin for pain, Ampyra for muscle weakness, Provigil for fatigue… again, the list seems endless. For the pharmaceutical companies, at least, MS is the gift that keeps on giving. For those afflicted with it, though, MS is the gift that keeps on taking. Most of the MS patients I know have a veritable pharmacy in their medicine cabinets. The amount of pills I take each day is almost comical. Almost.

The frequently veiled side of MS is the psychic beating it inflicts on its victims. Being hit with a chronic illness provokes a roiling ball of confusing and sometimes conflicting emotions within a person, so much so that these emotions can often be as overwhelming as the outwardly apparent physical symptoms of the disease. The emotions stirred are many layered, some obvious, and others less so. There are pharmaceutical remedies for some of these ills, too, of course, in the form of antidepressants, anti-anxiety meds, and the like. Speaking from experience, some of the drugs prescribed by those in the psychiatric profession are quite good at relieving freeform angst and anxiety, but I don't think they're all that effective at putting a dent in the emotional maelstrom stirred up by a disease that forces many of its victims to cope with the prospect of literally watching themselves whither away.

Strangely enough, my getting MS seems to have cured many of the neuroses that I struggled with in my physically healthy days. Back then, I was quite the world-class neurotic, at times capable of making Woody Allen seem well-adjusted. I never really suffered from depression, per se, but from anxieties that could sometimes be overwhelming, on occasion leaving me almost totally incapacitated. Some of these anxieties were triggered by genuine emotional traumas, such as the breakup of a relationship, or some other major life disappointment. Others, though, were harder to fathom, such as the acute anxiety I felt whenever a plate of pasta was put in front of me in a public place. No joke, a big helping of linguine with white clam sauce served to me in a restaurant was enough to make me hyperventilate and fall off my chair. Many years of psychotherapy and the use of a very effective medication helped me carry on despite myself, but I never could quite rid myself of my finely hewn neurotic behaviors. I made efforts to get hold of my emotions and rein them in, but more often than not, my emotions stood triumphant.

Once I was diagnosed with MS, though, most of my vast array of angst ridden tendencies were somehow exorcised. It was as if the Universe said, "You want something to worry about, schmuck? Instead of fretting about fettuccine, here, chew on this…" Suddenly, I had something very real to agonize about, and from this new and dreadful perspective the founts of my old fears appeared to be quite insignificant. Not that I wasn't initially completely freaked out by my diagnosis; I most certainly was, but having an identifiable trigger for this onslaught of emotions made them easier to gain control of, and made most of my previous concerns seem quite trivial in comparison.

I eventually discovered that the key to gaining some emotional command, even when the very foundations of my existence seemed to have been pulled out from under me, was sorting through the jumble of feelings engendered by my diagnosis and dealing with each one individually. When the mind twisting stew of painful emotions remained intertwined, their burden seemed insurmountable, but when I made an effort to untangled them, and to identify and address them individually, I found that I could create some measure of peace within.

Some of what I was feeling was easy to name. Fear took the forefront, but there was also anger, confusion, self-pity, and regret. I was fearful of what the disease might do to me, and of the head spinning medical world I was now being forced to enter. I was angry at just about everything, the doctors who diagnosed me, the disease itself, all the incredibly lucky bastards walking around in hale and hearty health, completely oblivious to their good fortune, and basically at the whole fucking suddenly upside down universe. I was confused about what exactly Multiple Sclerosis was, the strange new jargon attached the disease that would soon become a big part of my daily lexicon, and how sickness could invade the illusory fortress of my everyday existence. I pitied myself for being singled out for disaster, and for the future I had imagined but now seemed forever lost. And I regretted many of the choices I made when healthy; not so much the things I did do, but those that I didn't, and would likely never have the chance to do again.

Some of these feelings were easier to relieve than others. I confronted fear and confusion by almost obsessively educating myself about everything MS. I devoured every word I could find about the disease, rooting out esoteric tidbits of information from whatever sources I could uncover. As with all things in life, fear of the unknown is far greater than fear of the known, and I was determined to know, intent on staring even the most unpleasant facts about the disease squarely in the eye. Anger slowly subsided as I realized the futility of being angry at everything and nothing, as there was no identifiable culprit to focus my fury upon. The truth is, sometimes the anger still bubbles up, but I've learned to allow myself to feel it without letting it consume me. Self-pity got old quickly, as even though I might be a victim, that didn't give me license to wallow, with time now suddenly such a precious commodity. Instead, attack became my operational mode. Regret, I think, has been one of my hardest emotions to wrangle, as in many a quiet time I find myself drawn into contemplating all of the roads not taken. Would they all have eventually lead to MS, or would some of the paths that I'd left untrodden have circumvented this fate? Impossible to know, of course, and the variables seem endless, a latticework of converging and diverging fortunes.

Recently, I've come to recognize yet another emotion birthed by the disease, one that I have at times openly expressed, but never put a name to: guilt. Throughout this whole experience, underneath the louder and more histrionic emotions, guilt has resonated in a low but steady hum. Completely illogical, I know, as I didn't choose to get MS, but there it is, nonetheless. MS has an insidious and wicked gravity. At the disease's epicenter is the patient themselves, but its destructive influences radiate outwards, touching all who orbit the afflicted. MS doesn't only distress the person unfortunate enough to suffer from it, but all those around them as well, friends and family who are left helpless to watch their loved one struggle with a relentless enemy.

My wife and I were married only one year at the time of my diagnosis; gone were our happily dreamed of journeys to Pompeii or Tuscany, replaced instead by trips to medical facilities and doctor's offices. In addition the husband-and-wife, we've now become patient and caregiver, and although we said "I do" to the words "in sickness and in health", we never had an inkling of the impact with which sickness would soon slam us. My illness has caused endless worry to my family members, and especially to my mom, who has her own struggles with diabetes and Parkinson's to contend with. My friendships have also borne the strain of the illness. I have learned that family is in many ways defined more by love than by blood, and I'm blessed to have a handful of friends who long-ago eclipsed the boundaries of that title. They too have been stricken by my MS, and though we all do a marvelous job of playing make believe when we get together, it's impossible to ignore the realities of my situation.

I've always considered guilt to be one of the most worthless of emotions. Its only purpose is to teach those feeling it to never again commit the act that brought on the reaction. Unfortunately, many of those who most deserve to be shackled to an anchor of perpetual guilt seem oblivious to the emotion, and continue to repeat their offensive behaviors again and again. Liars lie and cheaters cheat, and though some may loudly profess the guilt they feel, their actions always prove otherwise. Once a person accepts repugnant behaviors in themselves, guilt is completely taken out of the equation. People sensitive to guilt generally live admirable lives, not so much because of the specter of guilt, but due rather to fully functional moral compasses.

Yes, MS provides challenges aplenty, both physical and emotional. The physical challenges tend to attract the most outside attention, and can be addressed, with varying degrees of success, by a multitude of physicians. The emotional pitfalls of the disease, though, can only be navigated by the patients themselves. Even a trained counselor or therapist can only help nudge the patient along the trail to self-awareness.

I've discovered that kindness to self is a powerful medicine. Strangely, many find it much easier to be kind to others, even strangers, than it is to be gentle to themselves. The emotional tsunami created by a disease like Multiple Sclerosis provides plenty of instruments for self torture, and though the feelings produced should not be ignored, they must not be embraced, either. The key is to acknowledge each emotion as a natural response to a terrible circumstance, allow yourself to feel it fully, and then show it the door. Our emotions are products of our own psyches, after all, and with practice and fortitude we can learn to control our creations. It's never easy, and as the disease progresses the degree of difficulty increases still, but as with any exercise, the more it is worked on, the easier it becomes. As Shakespeare wrote, "to thine own self be true", some of the best advice ever penned. If I might be allowed take such liberties, to the Bard's words I'd like to add, "to thine own self be good"…

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  1. As usual, you have hit all the nails on the head. You understand and write with a blinding purity and comprehension, gut wrenching in its truth.
    Thank you again and again for being willing to share your reality which mirrors so much of ours.

  2. I usually compare my life with MS as a constant ride on a roller coaster... something my surroundings may not always realise.

    YWhat you have written embrase the thoughts and/or feelings of all us MSers, no matter how mild/severe our symptoms might be... Thank you for sharing this.

  3. Being good to myself is something I still struggle with daily.

  4. This is the first of your blogs I have read - I found myself nodding and smiling throughout. You write beautifully. I will be back:)

  5. I miss... me. Sigh.


  7. Marc, but didn't you say you were not sure you have M.S.? We emailed each other. I know your doctor? Etc Etc. We talked about CCSVI? In any case, i hope you are doing well!!

  8. Marc...thank you. You are eloquent, ecouraging and inspirational. You make my own journey so much less lonely and confusing. We are sooo lucky to be able to hear from you...blessed.

  9. Marc - as usual you speak so eloquently for so many of us. I just kept saying, 'Yup, yup,' the whole way through your post.

    I especially could relate to the section about guilt. I have long held that guilt is a totally useless emotion. It is non-productive and only serves to hurt yourself. Being Jewish, I was raised on guilt and it's been a lifelong struggle to change that mindset!

    And finally, being kind to oneself, especially when dealing with a chronic illness, is a pathway to sanity and peace. Not an easy path to be sure - one filled with rocks and pebbles and streams to cross - but once we learn how to navigate it the rewards are great. I'm still learning, and I wish you an easy journey on your own path.

  10. Matt-thanks, I'm glad you appreciated the post.

    Hilda-being able to share these feelings and knowing that others "get it" is very therapeutic. I think one of the loveliest things about my blogging experience is that it seems I've been able to help others while at the same time helping myself. In the parlance of the corporate bullshit practitioners, it's a "win-win" situation.

    Andaje-yes, the journey certainly is a roller coaster ride, and also has much in common with many other carnival attractions. Bumper cars and the House of Horrors come to mind…

    Anonymous-being good to yourself is indeed a very difficult thing. We are taught not to be selfish or self-centered, but one needn't be either to be good to yourself. I've found that kindness to self leads to kindness to others, creating a kind of self-perpetuating engine of contentment.

    Julia-I'm glad you found my blog, and took the time to respond. Welcome aboard, and don't be afraid to criticize anything that you read here, as I openly welcome all points of view, as long as they're presented politely.

    Anonymous-I miss me, too. In fact I sometimes yearn for the the old me. I suppose it's only natural…

    Swamp Granny-I love your moniker, and also the fact that you came across my blog through an interest in Earth rending events. I hope you'll read the some of my other posts here, as despite our illnesses, or maybe because of them, we all do have much to share…

    Elyse-indeed, my diagnosis is a matter of debate. Really, though, it almost comes down to semantics. I have a chronically progressing neuro degenerative disease, resulting in increasing physical disability. It may or may not be a form of MS, but whatever you call it, I think the experiences we share all have great commonality. A rose by any other name…

    Jennifer-thank you for your generous comments. It's hard to imagine what dealing with this condition must've been like before the age of the Internet. At least, in a virtual way, we can reach out and connect with others sharing the physical and emotional challenges we face each day. How lonely those who came before us must've been…

    Ms Andisue-I'm glad you could relate to what I've written. Guilt is definitely one of the stranger emotions. One can only resolve to never repeat the action that brought on the feeling, and unfortunately there are far too many people who seem to be missing a "guilt receptor". The path to self kindness is indeed winding and sometimes very challenging to traverse, but there's much to be gained from attempting the journey, even if the destination always remains just a bit out of reach…

  11. Marc, it's nice to see you writing. I hope you aren't being chained to bed and are working through your recent illness. You are missed!

  12. As always, Marc, your Blog identified and illuminated the raw physical and emotional results of this disease. You put things in perspective so honestly and openly. I wonder if you have any idea how may of us love you and feed on your words. I always feel such a kinship to your posts.

  13. Ah yes the guilt. Probably one of the least suspected emotions of the (forgive me for saying)lucky ones (the non-patients). I'm betting anyone dx with a disease goes thru a majority of these emotions. Then we wonder if we're going nuts! An ironic kinship this internet has created. Excellent writing again Marc. I have even forwarded it to pple so they have a better understanding what a 'diagnosis' can be like to live through. Keep writing Marc I do enjoy your articles!

  14. Say Marc, I have to ask... Did you write (or blog) (different subjects of course) these type of straight shooting articles before suffering with MS?

  15. A rose by any other name....has sharp thorns

    Did Marc write before MS? I suspect he's always had a muse or two running around in his head.


  16. Marc, I deeply appreciate this post. Thank you for expressing the emotional side of this wicked disease.

    Getting to know you through your blog is like connecting with a long lost friend.

  17. This was timely. I've been RR for 19 yrs. Things have been picking up lately and I'm concerned I might have entered the next phase. I feel like I'm going through the diagnosis all over again, only I'm not 13 and I have a clearer picture of what the future may hold. I still struggle with the balance of what I can do and what I should do and sometimes saying 'no' feels selfish. Then I think I might as wall say 'yes' while I still can. And then I get tired. I was never a quick learner to begin with.
    Thanks so much for your blog and sharing your vast wealth of information along with your own trail, travails, and emotional journey. It's nice to not be alone.

  18. Hello Again,


    NERVE FATIGUE can lay waste to all plans. Even outstandingly good plans. NERVE FATIGUE, that is MS generated' makes no sense, at all, to even the most open minded persons who haven't had the empathy generating experiences that MS and/or other chronic illnesses offer.

    From here, in my wise and ancient age, and balanced precariously on my cypress knee pedestal, I would suggest that you do as much, of what you want to do, as you possibly can. If taking a two day nap is what you want to do, the get as comfortable as you possibly can, and, by golly, wallow. And don't worry about nonMSer's expectations of you. If you want to do something, and you have the energy to get started, then get started. When you feel up to it, do a little more. If you know that you have given yourself permission to stop when you feel like it. You will be surprised at how much energy that frees up. All that angst takes energy. Let it go.

    The only things that you absolutely MUST do, wether you feel like it or not, are to: care for children and any animals that depend on you. If you have children, it is IMPERATIVE that you make sure they are cared for with love and joy in your heart and on your face. No matter what.

    And:. It is OK to allow nonMSers, who don't understand, to feel bad about being so dense. We don't mind. It is not our fault that nonMSers have Dificent Sympathetic Thought Disorder. We do not feel guilty as no one can cause anyone else to have that problem. DST Disorder is a self generated disorder, and not the fault of any MS Experiencing Persons who have unfinished projects, unmade beds, or even cockeyed buttons on our shirts. We do not cause nonMSers to grimace or sniff or to engage in any other rude behaviors. We recognize that these rude types of behaviors a merely the result of DST Disorder.

    I am Ye Olde' Swamp Granny and I take full responsibility for my comments here, wether you have DST, or not.

  19. Hi Marc,

    You are an exceptionally eloquent writer Marc and I think much of what you say holds true for many of life's more challenging adversities.

    On another entirely unrelated matter- have you read Kill Your Friends by John Niven? It's all about the music industry and written by an ex music talent spotter here in the UK. It's an engrossing and, at times, very funny read. Seeing as you worked in the industry you might find it enjoyable:)

  20. awesome writing Marc. I find the most difficult thing is to be nice to myself. Im plain old pissed off.Greek

  21. What if the guilt is about trying to take a little bit of control in a helpless situation? Somebody told me once that guilt and resentment are always side by side. If you are resenting something, maybe you're going to be feeling guilty too? Powerful stuff. Thanks for scraping off your barnacles and laying them out for us again.

  22. That was your best yet.
    The only emotion you didn't spend much time on, that I see my wife wrestle with (in spirit, as her physical wrestling has been limited to things like brushes, cups and clothing for some time) is frustration and a feeling of futility.
    Like many people with MS, she has tried just about everything available to treat it - diets, supplements, medication, holistic therapies, acupuncture... you name it. Nothing has had any significant effect. After 20 years of trying, it's pretty tough not to give up in frustration.
    I can also see the guilt you describe, and it goes both ways. My wife is guilty that I am not not just her husband, friend and lover, but also her nurse, orderly, maid, housekeeper, cook, chauffeur, and compounding pharmacist. I can see that she feels guilty every time I help her get back into bed.
    Likewise, I feel guilty all the time. Although it's entirely irrational, I feel as though I should find some way to heal her, or at least make her life better. Every time I do something that I enjoy, I feel guilty because she is no longer able to do all the things that made her happy.
    Of course, we both know that guilt is silly - but for some reason it is much harder to manage than anger or some of the other emotions in your list. Perhaps it's our cultural background, or maybe humans are wired that way.

    Thanks again for your exceptional insight.

  23. Mark:
    Thanks for another thoughtful post.

    A new immunology theory is making rounds in the
    scientific community: autoimmune deseases are a result of disbiosis. Disbiosis can call inflammation, which could be suppressed by the
    polysaccharide A (PSA) microbe.
    If correct, this would switch MS treatment to the immunology field.
    Can you read this and other PSA articles on the NIH site:

  24. Boom-thanks for the kind words. It's nice to be missed, I do plan on trying to make up for lost time.

    Anonymous-thank you for your generous comments. If I can help you just a fraction as much as you guys help me, then I've something to really be proud of.

    Mitch-yes, strange how there's kinship in disease. Before going out on disability, my 20 year career was spent in the television and video business, where I did do some writing. Mostly completely forgettable scripts for industrial videos and/or local television commercials. I always dreamed of being a writer, though, and it looks like my dreams have in some ways come true, unfortunately in the form of a nightmare…

    Kicker-is that which then running around in my head? A Muse or two? I thought they were lesions…

    Ellie-thanks for the kind words, being able to put thoughts to paper (or in this case, to screen) has been very therapeutic for me. It's very satisfying to know that it's also been comforting to others.

    Briana-it is nice to not be alone in the struggle. The Internet has given us lots of virtual shoulders to lean on…

    Swamp Granny-what can I say, you've put it all so well. Glad you found my blog, hope you'll continue to contribute.

    Jane-thanks for the compliment. I have not read the book, but it sounds like I should. During my career, I worked in both the TV and music industries, and I must say that the music industry was quite the shark pool.

    Greek-I'm happy that I've gotten to know you, and you deserve to be nice to yourself. There are plenty of people out there that can take care of the not being nice to you part, so give yourself a break…

    BJ-guilt and resentment as companions. Very wise words, thanks for sharing.

    John-ah, yes, frustration. Now there is a minefield. I think you've given me a topic for a future post, thanks…

    Anonymous-thanks for the link, further proof that MS is much more than a neurologic disease. CCSVI is demonstrating that the vascular system is involved, and there have already been immunological implications. Once researchers start looking at this as a systemic disease, we might get somewhere…

  25. OH WOW - Thank you thank you! I have a friend who has MS and oddly enough found out about your site through a recommendation on Facebook. : ) Which I feel pretty much about the same as you about... until now.

    Neither I nor anyone in my family suffer from MS... but my son has a disease called hidradenitis and has been depressed and angry as of late in a deeper way than I have seen over the last 10 years that he has been fighting it.

    Your site and this article have put a new understanding in me and I thank you from the bottom of my heart for sharing your stories!

    My son told me that as of late he feels so angry when he hears the words "I am so sorry" from friends and relatives when they hear he is having a bad day. He said the rage boils up in him and he feels so much worse that what people feel is "sorry" and he is at the center of that.

    To all of you - I am sorry for your pain, blessed by your sharing, and praying for cures.
    Thank YOU!

  26. You're not harboring that painting you used at the top of your post--The Storm on the Sea of Galilee, are you? It's very much wanted and would be a very appropriate painting to hang in one's bathroom. lol.

  27. Wow Marc, I searched and needed this exact lesson. What a tangled set of emotions this MonSter stirs up. Great! Thanks!

  28. I don't have MS, I have ME - Myalgic Encephalomyelitis (an inflammation of the brain, spinal cord and nerves). Substitute MS with ME and your blog and this post specifically nails it! For me the guilt is my biggest struggle. I've been sick for almost eight years now. I haven't worked in four years. I've submitted for SSDI and am waiting for their response... My wife is an amazing trooper, care giver, friend and hug giver! But wow do I feel awful about what this has done to "US".

    I stumbled upon your YouTube videos a few days ago. What a hoot! And so spot on! I'm in my first few months in a wheelchair. It has opened up so much of the world that I wasn't getting enough of. But yeah we view the world through butts n groins alrighty! So via your YouTube channel I came upon your blog. It's soooo applicable to my experience with ME.

    Thank you for sharing Marc! It really helps to get that someone else knows the misery.