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Surfing an Emotional Tsunami

Surfing an Emotional Tsunami

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”…

This article was originally published on Marc’s website on 11/14/10 and is being featured on MultipleSclerosis.net with his permission.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • chong61
    11 months ago

    Marc, as I read this one word kept jumping out at me and that is guilt. I have lived feeling guilty and thinking I may have hastened my husband demise because of this hateful MS.

    I was diagnosed well over 20 years ago and each year took a little more from life. The last few years I lost all ability to cook, drive and do house work. My husband did it all, he shopped, he cooked, he vacuumed, he cleaned, he did laundry, he drove me to all my doctors and still he did not complain. What a blessing he was to me and I just can’t forgive myself and have guilt that all he did for me made him not take care of himself.

    He passed away within 5 hours of getting to the hospital. My children took me home about midnight so I could take my blasted MS medication and rest some. I did not even stay with him the last 2 hours.

    To put this all in perspective, I need to tell you we had been married 58 years. He has been gone now over 3 1/2 years. Now I have to depend on my children, all three are always there and pleased to help Mom. I just wish Mom (me) had not put such a burden on my husband with this “take no prisoner” disease MS.

  • Marc Stecker-Wheelchair Kamikaze author
    10 months ago

    So sorry to hear of your dear husband‘s passing, please except my sincerest condolences. Yes, this disease just takes and takes and takes. Takes from us, takes for loved ones, and, even, as in your case, it takes our loved ones. Let us hope that someday there will be a world without MS, and other dread diseases. It’s awfully darn slow going, though…

  • vvxjr9
    11 months ago

    Wow, that was a great article. It sounded so much like me. It’s just incredible to see and read your words in front of me. That’s how I feel too.

  • Marc Stecker-Wheelchair Kamikaze author
    10 months ago

    I’m glad my words gave you some comfort, but sorry that you have to share the MS battle. It’s a physical and emotional war, And although some days are better than others, it’s never easy…

  • lolagraknowla
    1 year ago

    New to this altered reality, yet 110% living it. Guilt. Unpleasantly my constant companion to every new hardship. Eh.

  • Azjackie
    4 years ago

    This article is ow I feel.

  • MShope2019
    4 years ago

    Thank you Marc for putting into words what I could not express but definitely feel. x

  • Joan
    4 years ago

    I am a retired French prof, but hardly as articulate as you, Marc. I just want to add something to your thoughts about guilt. I told my beautiful daughter lying in her hospital bed, unable to move or see beyond her nose, that even though she may think she’s doing nothing for the past several years now, she has brought so many people together: caregivers, friends, strangers, family, an entire community. This is something, in my mind, that is, almost, unheard of. Now, her speech is affected, but when she smiles, our hearts are warmed. Some days, her speech is better, but it’s hard to understand it over the phone. I told her that, without her knowing it, she has taught so many people something vital about themselves. Hard to explain because it’s a bit spiritual. My daughter, of course, replies that she doesn’t care; she just wants to be self-sufficient again. I understand.

  • north-star
    5 years ago

    This is a complex and insightful article. I used to be able to ride the waves of emotion (a great analogy!) but lately I’ve been overwhelmed; loving the me I am right now is pretty hard. Not sure if I can feel some emotions fully and move on. It does seem worth learning. Good article, made me think, thanks!

  • Faith French
    5 years ago

    As always Marc, you add much to the points when you write, and which many can relate to in our bazaar world with MS.

  • Carol
    5 years ago

    I very much enjoyed your outlook on our very cruel disease. I went through all the phrases that you mentioned. But the guilt, don’t you feel like maybe sometimes we are a burden to others and I really hate the idea of “caregivers.”

  • mamak1118
    5 years ago

    I can’t say enough how much I enjoy your writing – both what you say, and how you say it.

    I come from a Catholic mom and a Jewish dad, so I think I know a thing or two about guilt. My inner moral compass is almost TOO functional. Now add MS to the picture. Even worse, an MS diagnosis with only two lesions that can be spotted on my spine. No lesions lighting up my brain, but two little ones wreaking havoc on my life. And I read posts like yours, and I feel so GUILTY for even saying I have MS. I even call it MS Lite. Yes, I have debilitating fatigue and brain fog. Yes, I suffer from lack of balance and coordination. I have all of the symptoms, but only two of the lesions. I can hardly put myself in the same group with all of you who, I’m sure, dread the annual brain MRI.

    Anyway, thanks for letting me come clean, and for reminding me to give myself a break.

    Kristi

  • dnavia
    5 years ago

    couldn’t of put it better myself..

  • fedupandconfused
    5 years ago

    Wow very profound and well written thanks for sharing.

  • Michraf
    5 years ago

    Thank you.

  • sarah
    2 years ago

    Thank you & reading others feel the same way to a certain point, does make you feel your not as alone as you think you are. That others out regardless of where they are, feel the exact way. May be a little weird, but it’s encouraging to me.
    Thanks for writing..

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