Friday, April 23, 2010

Whenever I Feel Afraid...

Fear of the Dark

Image by stuant63 via Flickr

MS is some scary shit. There's no getting around it; you can insulate yourself in medical research, armor yourself with objectivity, and shield yourself with detachment, but at its core, MS is still some scary shit. The disease itself is terrifying, the impact it has on people's lives is horrifying, and the treatments used to combat it are frightening. As much as I try to keep a lid on it, every so often the lid cracks open just a little bit, and fear comes blasting in, like pressurized water through a breach in a dam.

MS patients must live with the disconcerting knowledge that some unidentified enemy is chewing away at their nerve cells, literally eating holes in their brains. We talk about "lesions", and "myelin", and "white matter", and "gray matter", but when you strip away all of the clinical medical jargon, you're left with "holes in your brain". Our brains are who we are, the storehouse of all of our knowledge, and the repository of our personalities. They are what make us human, so in a very real way, MS threatens our very humanity. Out of sheer self-preservation, we do our best to avert our eyes from these realities, but they are our constant companions, always just a momentary lapse in vigilance away from sneaking in and slapping us hard.

The destructive potential that the disease has on the foundational elements of its victims' lives is without doubt appalling. Careers can be extinguished, relationships smashed, dreams and expectations laid to waste. At the time of diagnosis, most MS patients lead seemingly normal lives, driven to seek medical help by either the gradual or sudden onset of symptoms, which often manifest as nothing more than what initially appears to be a mere hiccup in the flow of daily routine. Soon enough though, that slight limp, that blurred vision, or that annoying numbness comes to be understood as an ominous harbinger of the possible physical cyclone to come, the implications of which, when stared at straight in the eye, can be overwhelming.

The medical procedures and treatments that come bundled with an MS diagnosis are also fraught with trepidation. I distinctly remember the jolt of fear I felt when my mind slowly deciphered the phrase "lumbar puncture" to mean "spinal tap". Although I'm not particularly claustrophobic, I know many MS patients for whom the idea of being stuck in the confines of an MRI machine for 90 minutes is panic inducing. The drugs offered to us have side effect profiles that sometimes seem worse than the disease itself. Who among us relishes the idea of having the intricate workings of their immune system, that poorly understood and delicately balanced product of millions of years of evolution, fundamentally altered by chemical compounds whose mechanisms are not fully comprehended even by those who invented them.

How then, does one not collapse quaking under the fear factor of Multiple Sclerosis? Of course, each of us is reacts differently, and we all cope in our own unique way. Some go into deep denial, preferring to simply make-believe that everything is okay. Others, like me, choose to go toe to toe with the thing, and immerse themselves in the research and realities of the disease, sometimes obsessively so.

We all eventually learn to take it day by day, often with a large dose of gallows humor thrown in. Most of the fellow MS patients that I've met are a pretty funny lot, whistling past the graveyard determined to have a good laugh at the expense of the disease, raising a sharp edged middle finger to the illness and the universe that provided it. Some find solace in religion, others turn away from it. Mostly we soldier on, unwilling members of a secret society whose personal rituals and behaviors remain unknowable to outsiders, no matter how well-meaning they might be. We adapt, sometimes on a daily basis, to the changing circumstances within, subtle changes that aren't so subtle to those going through them but often seem maddeningly invisible to those on the outside looking in.

Thankfully, I've found that in almost all things MS, the anticipation is far worse than the reality turns out to be. That spinal tap, the prospect of which made me lightheaded with fear, was really no big deal. I know there are others who disagree, who have had a hard time with their lumbar punctures, but for whatever reason, the procedure hardly fazes me. Not that I'd recommend one as a recreational activity, but I'd rather have a spinal tap than dental work.

The prospect of abandoning my career filled me with dread, but when the moment finally came, the overwhelming feeling was that of relief, and the sudden freedom from the daily grind allowed me to rediscover myself, and tap into talents and parts of my personality that had long lain dormant and neglected.

If I'd been told 10 years ago that within a decade I'd be forced to rely on a wheelchair, I quite honestly might have said that I'd prefer suicide. I put off actually getting the contraption far beyond the point that I needed one, and when the day came that it was delivered and sitting in my living room, I sat alone looking at it for quite some time, mulling my new normal with a mixture of defeat and resentment. But the infernal chair turned out to be liberating, my ticket back into the world, a transformational vessel that changed my perceptions of myself and my predicament, and allowed me to pursue creative passions that I thought the disease had stolen for good. And, much to my surprise, driving the thing turned out to be (dare I say it) fun, whizzing past startled pedestrians on the streets of New York the perfect outlet for the naughty five-year-old that was cooped up inside me, bound by the constraints of adulthood for far too long.

When I was a kid, I was an anxious and neurotic little boy, and my mom would often sing me a song from "The King and I" that went like this: "Whenever I feel afraid, I hold my head erect, and whistle a happy tune, so no one will suspect, I'm afraid". Mom had her own troubles and reasons to be afraid, but she too soldiered on. Sometimes, the only way to be brave is to act brave. MS is some scary shit, and fear might as well be listed as one of its symptoms. But fear can be conquered, and every day, in the MS patients I know online and in real life, I see a quiet courage that is constantly put to the test but rarely wavers. In the end, we live each day as best we can, MS and the fear that comes with it be damned.

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  1. Thanks once again, Marc, for having so poignantly put my feelings and emotions into words. Your posts lift me up and sometimes give me that much needed kick in the ass for which I am very grateful.

  2. If I could hand out Pulitzers, this post would get the prize for its eloquence, thoroughness, poignancy, and heart in describing perfectly what it means to come down with MS.

  3. I die a hundred deaths because of my anticipation of the harm MS might inflict on me and I need to stop and Carpe diem and let go of this delusion of any control. I know this but you had to help remind me. Thank you.

  4. Marc, Judo is a survival method that first comes to my foggy mind. Every MSer’s fight with the MonSter at its base is a one on one battle. In Judo you take the energy of your opponent and use it against them. You however must be willing to take on the fight. Every time I read or see someone stepping in to the circle and preparing for battle I am proud and inspired. Thank you for accept your battle

  5. We can either laugh or cry, and it truly is a decision. Not just us MS'rs have to decide this but everyone. I have to choose each day I struggle to wake up from the fog and decide, "I'm going to make this a good day". This is easier said than done somedays but we owe it to ourselves, our families and those we deal with everyday. I think about your posts as I limp down the hall at work, staying close to the wall of course. We all have our own personal battles we are faced with and we need to fight on! I am fighting the assistive devices, but the battle is going the other way. I know you say you always waited too long, but that is the way of a fighter. I choose to fight!


  6. Marc, Today I am sitting at home because I was overcome by the fear you described. My husband told me that my fear is disabling me more than my disease. I walk with a limp and hate the sound of my shoe as it drags across the sidewalk with each step I take. So...I am taking less steps. I don't feel comfortable asking for help carrying things at work, so...I am taking less to meetings. I know I'm lucky that I'm still taking steps and still going to meetings, but it's changed and the anticipation of the next change scares the crap out of me. MS is scary shit. I just wish I had a better handle on it so I could start to look forward without fear. Thank you again for the timely post. I think you are entering my psyche. Mimi

  7. youre such the man Marc. More of a man than anyone i know. Your continued fight, your knowledge, your eloquence, your faith, it never ceases to amaze me. I wake up in the morning and my first thought is that of anxiety and a pit in my stomach. If i could only start thinking like you do. I pray for the day i have your toughness.

  8. Marc, your every word is a physical touch. you tell it like every person with MS wants to, but hold back because of a need to "tough it out" or not complain. But, deep truth always persists and prevails.

    Thank you for being you, sharing the real deal, and yet inspiring all to continue to value life and the gifts they have in family and love.

    and, Greek, you are the same kind of man. I know...

  9. Are you psychic, Marc? I've been dealing with my fear of the future with this disease for the last several weeks.
    My older sister, who has severe heart damage and is on oxygen 24/7, calls me up occasionally and tells me I have to fight every single day. She fights giving in to her disease because her adult kids need her.
    Sometimes I want to give up, though-I don't want to drag my husband and kids down with my increasing disability.
    But they all want me to fight--so, I fight. I fight to try to find value in my life; to find purpose. I guess there is value in just persevering...
    Thanks for your perspective on this-as always, you said it best.
    Debbie D

  10. Thank you for this Mark. I was pondering trying to capture this on my blog, but after reading, nothing more need be said. You express yourself so very well and speak loudly for many of us; even one's that also have blogs! Be well today my friend.

  11. Yet another great post. Thanks so much. Reading your blog means a lot to me.

  12. You're blog is great! I myself have never worked, except for part time jobs in college. I got my diagnosis at 20, kept soldiering on- went to India twice, then at 23 was kicked back a couple notches after waking from a typical stent of insomnia to find I couldn't walk right. Since then soldiering on was difficult. I retreated into myself as I felt like interacting with people (outside of my family and boyfriend) was overwhelming and very tiring. I finished my degree after a couple years on independent study, and it's been a year since I graduated. I feel like the fear of the MS holds me back more than anything. The fear of symptoms (what was going on in my body and what it looked like to the outside world) paralyzed me for three years even more than the symptoms themselves.

    So now I'm trying to figure out how I can work. Living with parents is nice and you would think stress free, but no. I want to do things. I want to work. Working with vocational rehab now, but the fear of what I can do and what I can handle holds me back. I guess if I can't do it I can always quit. I never got my license when I was a teenager, and didn't really have a need for it in college. Finally got it this last week and am discovering increasingly when I set my mind to something, and don't let fear eclipse my goals, I can accomplish more than I thought possible.

  13. Marc,
    Last summer when I gratefully discovered your blog, the first post that I read was “The Problem with Progression”. That post, like this one, put my fears and thoughts into words in a way that really hit home.

    I would say that fear has been a faithful companion for the last 7 years. Right now it is early morning of a beautiful, sunny spring day (yes, we occasionally get those in Norway). This quiet part of the day has always been my favorite time. But thoughts of my disease are always lurking in my mind, and make it more difficult to appreciate these small joys.

    But as you say, the fear is often worse than the reality. I put off going on medication for fear of the needles and potential side-effects (that was a mistake). The reality is that taking the meds has become nothing more than brushing my teeth in the morning; just another part of my day.

    Tackling fear has been perhaps been my biggest challenge in fighting this disease. But I am truly grateful for the support that your blog has provided and am also grateful to every person that has been willing to share their thoughts here. It is comforting to know that we are not alone in our fight.


  14. As usual, so very well said, Marc! Thank you!

  15. For me, it is the fear of the unknown. MS is like jumping off a cliff into free fall. You seem to have mastered the art of spreading your body and embracing the rush of wind. I am flailing my arms in more panic. Your blog does help. Aarcyn

  16. Beautifully stated! Thank you so much

  17. For me its lonelyness being left out not on purpose but not being included in all the things I cant do and not being able to drive. I can go on & on but the bottom line is its so hard to stay possitive and happy when nobodys there to share in your happiness its like having a contagous disease nobody wants to near it What a shame. Boy if I could redo my life. Thank you for reading and next time you want to put a smile on someones face just listen. linda

  18. marc, i have no words. just tears of joy and grief that encompasses feeling seen and gotten... by your words... thank you and yours. aliyah

  19. It was October 2004 when my love said to me 'my arm has gone numb' to which I replied 'God I hope it is not MS'. It was his first symptom and my first thought having recalled a friend of mine with MS tell me he thought he had a 'problem' when his face went numb. 2 weeks later, my love was diagnosed. He told me over the phone from Malaysia, I was away on holiday in Devon. In an instant I saw wheelchairs, crumpled up bodies and decrepit legs. I was both horrified and scared of that future and even more horrified by my reaction - if that was my reaction, what was his? He was terrified. 6 years on, he is lucky so far, he has it mildly and he courageously deals with the effects he has, but I can see him deteriorating, no wheelchairs yet, but it will probably come. I dread it every day. And I don't even have MS, a disease which is utterly utterly revolting. I hate it. I don't know how people with MS do find the strength to deal with it, but they do. People like you Marc are an inspiration and help enormously. Thank you, for leading us through this hell hole, but don't be scared, we're all behind you.

  20. Reading your words about your journey with MS made me rethink some long held opinions, eased my discomfort about the fear I carry around every day, and (at the same time) made me feel more connected to the world. Your words have quite an impact---as mentioned in so many preceding comments.

    My brain is a huge part of who I am but it is not entirely who I am, just as my body would never be what I identify with entirely. There's something else that makes up my total being, although I haven't found the right words for it yet.

    But here I'm rambling off topic, keyboarding to a silent universe. Thanks Marc for your inspiring blog post, and I hope you're zipping through the streets of NYC taking no prisoners!


  21. My daily haiku triptych has been dedicated to this post and your blog. The link:

    Thanks again for this beautiful post.


  22. Well written! It is scary shit, for sure. I try not to think about tomorrow and focus on today (even when today I feel uncomfortable or exhausted or my legs are not cooperating or my hands)...but still, some how tomorrows creep into my psyche and I do get scared. And yet, the slowing down has benefits as you mentioned. I am learning a lot about myself and about gratitude and compassion too. I have a part time relationship with my wheelchair...but I do feel tremendous freedom being able to go out and about on longer excursions than I would be able to if I had to manage with my cane alone. So gratitude is big for me. I'd love it if you stopped by my blog sometime. blessings on this wild ms journey.

  23. As the spouse of an MSer let me tell you what I don't fear. I don't fear pushing my spouse around. I don't fear having to handle most of the chores. I don't fear not having the physical intimacy I thought I would have. I don't fear the thought of my future. I FEAR the thought of the fear my spouse has taking our moments away from us! I Fear that he is missing the beautiful moments with our four children because he is so caught up in fear of the future! The only thing I really fear is his fear. We only have today!!!

  24. Thanks Ananymous for that last post. I am a husband (with PPMS) that doesn't want to be that person captive by his fear of the future. I am amazed at how much energy it takes to do things, and how long it takes to recover. It is always worth it. I think the spouses and kids (I have three kids) realize how much effort it is taking you and they appreaciate it all the more. I need encouragement to keep going, and I fall in slumps way to often. My Faith and Family keep me fighting, as well as posts like yours.

    Thanks Jim

  25. True enough, it is a whole pile of scary, unless you have the testicular fortitude to adopt the 'live in the now' approach. Which seems to pacify the unknowing dome of 'whats next' until you accidentally briefly let your guard down and allow yourself to pine over the idea that, this is not what I signed up for! Well unfortunately there is no registration required for the game of life. Your in it whether you like it or not. It then becomes a decision of how to play so that you get the best return on your invested time. Unless of course you decide to numb yourself to any resemblance of reality with legal or illegal substances which then becomes a recipe for the pending collapse.(added for dramatic prose)
    And, ya an MRI, forget about it. Thats scary shit. Theres not enough gravol that can be prescribed to calm the fearful mind when strapped in the magnetic coffin. Ironically, its just another state of mind to overcome the relatively harmless imaging monster.
    One step at a time.

  26. First, I'd like to thank everybody for their provocative and emotional responses. When I started this blog a little bit over one year ago, I never imagined that it would reach out to touch so many lives, and that those lives, in turn, would so profoundly touch mine. You've left me humbled and grateful.

    Lisa-although we all seem to physically experience this disease in our own unique way, the emotions it gives rise to seem to be universal. I'm glad my words offer you the occasional kick in the ass, although I do hope it's a gentle one.

    Judy-Pulitzer? Well, flattery will get you everywhere. Thanks for your overly kind words.

    Kicker-the idea of control is not a delusion, but you must remember that all you can control is yourself. And that's plenty hard enough...

    David-you're welcome, but this isn't a battle of my choosing. Even so, I will continue the fight until there is no fight left in me. Thanks for your provocative comment...

    Jim-good for you, do keep fighting. How we tackle each day is indeed a choice. I completely understand your resistance to assistive devices, but don't resist for too long, as part of the fight is learning how to bend but not break...

    Mimi-I think the answer to your problem is contained in your response. MS makes it almost impossible to look forward without fear. Instead, one must stay as best they can rooted in the present, since "now" is the only moment in time you have any control over. Of course, you must plan for the future, and not live with your head in the sand, but you must not let thoughts of the future poison the present. Today is the only today you are ever going to have.

    Greek-I'm grateful that we've gotten to know each other, and I can tell you that you're one hell of a man yourself. You wake up in the morning with that pit in your stomach, but get on with your day anyway. Guess what, I wake up with a pit in my stomach also. Maybe I should stop eating cherries before I go to bed...

    Hilda-thank you for your kindness and continued support. I think that part of "toughing it out" is acknowledging your vulnerability, and, in a way, embracing it. None of us is Superman, and making believe that you are impervious is living a fallacy. Instead, we must try to make our weaknesses into strengths, or at the very least learn how to navigate around them. One of the hardest lessons to learn is how to be gentle with yourself...

    Debbie-your sister sounds like quite a fighter, and the two of you must make a dynamic duo. We all sometimes feel the urge to give up, but, as you say, we owe it to ourselves and our loved ones to continue the struggle. Sometimes I think that giving up would actually be harder than fighting, as it's in our nature to fight that which imperils us.

    Lew-thanks for your praise, your heckuva good writer yourself. Everyone should check out Lew's blog at It's his journal of his post CCSVI treatment experiences.

  27. Anonymous-thanks for your kind words.

    Elizabeth-I'm certain that you can accomplish more than you think possible. Getting your drivers license is certainly an accomplishment, as was finishing your degree. Keep trying to pile up your accomplishments, if you reach a point where you can go no further, you'll simply pull back a bit. Set your goals realistically, and then strive to achieve them. I think you'll surprise yourself with what you actually do get accomplished.

    Ann-I have valued your participation in this blog since she first appeared many months ago. I think that fear is one of the most unaddressed aspects of living with MS. It's much easier to talk about the toll the disease takes on us physically than the emotional havoc it creates. As you say, the fear is always there, but it is possible, and in fact vital, to acknowledge the fear and go on with your life in spite of it. I'm not saying that it's easy, but nothing about MS is.

    Anonymous-you're very welcome, and thank you.

    Aarcyn-believe me, I have my share of "flailing" moments, too. All that flailing takes so much out of you, though, that eventually it becomes easier to exercise some control. If you stay rooted in the now, there is no rush of wind, just a quiet stillness. Finding that stillness takes practice, but even if you can accomplish it for only a few moments a day, it helps break the cycle of flailing.

    Kimber-you're welcome, and thank you.

    Linda-this disease does present us with many challenges, and loneliness is certainly one of them. Even well-meaning friends and family can only do so much. You're right, sometimes listening is the best thing you can do for someone else...

    Aliyah-I hate to think I made you cry, but sometimes crying is just about the most therapeutic thing you can do. I shed a few tears over this thing myself through the years. We all have...

    Teacakes-glad to hear that you have my back. And thank you for being a supportive partner to your loved one. This disease is very unpredictable, but if he eventually does new wheelchair, we'll deal with that with the same courage that you've dealt with all the rest. In the meantime, enjoy all that he still possesses, and leave the losses behind.

    Patrice-I agree, there is something more to us than simply mind and body. There is a life force that is undeniable, but also undefinable. It's kept humans pondering since they developed the capacity to ponder.

  28. Judy-thank you so much for your poetry. To have inspired a haiku, what a unique honor...

    Laura-yes, the tomorrows do tend to creep in under the cracks in the door. I'm glad that the slowing down has given you a chance at self learning, it's amazing how much about ourselves can be uncovered, even after many years of life. I will stop by your blog.

    Anonymous-well said, and your spouse is lucky to have you. I'm sure you help him as best you can to enjoy the beauty he may be missing. You're helping him has a beauty all its own.

    Jim-spoken like a true gentleman. It is incredible how much energy it takes to do things that previously had been just about effortless. We all need encouragement, and we all fall into slumps. Occasionally we must force ourselves into action even though it sometimes feels impossible. Just make sure to give yourself enough time to recover afterwards...

    Another Jim-also very well put. Certainly, none of us signed up for this, but we've got to play the cards were dealt. I've played a fair amount of poker in my time, and that game teaches us that there are ways to win even if you don't hold the best cards. As far as we know, this is the only life we get, so might as well make the best of it regardless of circumstances...

  29. Thank you Marc.

    Riveting, spot on, uplifting..

    "..unwilling members of a secret society whose personal rituals and behaviors remain unknowable to outsiders, no matter how well-meaning they might be."

    What a great analogy I had a good laugh so I thank you for that too... I hope I can remember that quote and quote you ..if that is ok?..:)

    Be well,

  30. Marc,
    Such a brilliant description of life with MS. Be well and continue the fight.

  31. I love what you do!!! Thank you so much! Every single time I come into your site, I feel at home. You say and "show" (your pic's and video's) what I feel and you did it with such Class :))

  32. Thank you Marc for putting into words what I feel everyday yet can't quite articulate to even the people that I'm close to on a day to day basis. You nailed it!

    Please keep on keepin' on.

    I look forward to many more posts,
    be well Marc, and happy roads to you,

  33. This was an emotional read-- I remember well the song "Whenever I feel afraid...". For those of us with loved ones dealing with MS (my daughter in my case), the fear is there for us too. We all "soldier on", and we all hope for a better future. Thanks again for the words of wisdom, Marc. (prairiegirl)

  34. I am feeling weepy today. It's my 3rd day after my 2nd Ty infusiion and I'm still feeling the achey tiredness that I got the first time around. It's nothing like the 3 day "malaria" I got after Avonex injections, and I'm glad not to have to try daily injections into scarred, painful,tissue that after 8 years had reached its limit with Copaxone. Today the enormity of what I've been doing to my immune system over the past 11 years hit me. All those above drugs plus 6 rounds of Novantrone makes me afraid to ponder what is to come in the future. Not just the course of MS but have I skewed my immune system toward some future cancer or other scary disease? It's too much to think of so I guess I'll just keep on keeping on. But still, today is a sad, scary day.

  35. Beautiful post Marc. There are a lot of people on this planet living with all sorts of diseases/challenges. People often tell me I'm brave. I'm not. I'm often scared. But I *am* courageous.

    I find that having like-minded friends makes living in the now and being courageous much easier. You are a friend to many.

  36. Thank you, MS scares me to death especially because I'm only 16 and have had it since I was 12. I become scared for what might be in the future. I need to focus on today and live for the moment that is now.

  37. Marc, I read this now for the very first time. I had my quarterly breakdown on Saturday night, the kind of breakdown where you feel like everything is going wrong and the reality of MS is that it's going to get worse and if we are blessed to have it not get worse, it will only be as good as it is today.

    It sort of feels like the walls are closing in. Not that I'm glad you go through this, too, but it is nice to feel that I am not alone.

    Thanks for writing this, Marc!

  38. You rock!!! I will print this one and bring it with me to my psych appointment today!

  39. I was led to your site by Judy's 'Peace Be With You' blog. Reading your post reminds me it's OK to be scared, even after all these years. Thanks for that.

  40. Well, your frown is upside down ;-)