Wednesday, March 24, 2010

To the Real Heroes...


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I've been surprised, flattered, and humbled by the tremendous response that my recent writings about my "Adventures in CCSVI Land" have elicited. I'm incredibly grateful to everybody who took the time to leave their extraordinarily gracious comments on my posts, or to send me personal e-mails filled with hope and encouragement. The fact that I might serve as an inspiration to anybody seems to me to be the greatest gift in the universe a person could be given, and to all who have taken the time to express such sentiments, I offer my deepest gratitude.

Some kind folks have even used the word "hero" in their correspondences with me. As much as I'd love to have a big "S" emblazoned on my chest, I feel compelled to say that the word hero should be reserved for those who display incredible valor, and who choose to put themselves at risk for the sake of others.

The reality of my situation is that I'm just a guy desperately trying to save his own ass. I've found myself caught up in a raging river, heading swiftly towards a giant waterfall. I'm grasping for whatever handhold I might find, in a frantic effort at self preservation. A hero would be the person who jumped into the river to try to save me, despite the very real danger that they themselves might too be swept over the falls. I had no choice in the matter; real heroes must make the conscious decision to suspend their own survival instincts for the sake of someone else's well being.

Although I'm not a hero, I do live with one. My wife Karen displays, each and every day, the quiet bravery and steadfastness that truly define the word. I was diagnosed just one year after we were married, and in the seven years since, Karen has quite literally been by my side through innumerable treatment sessions and doctors conferences, and suffered with me the long series of raised hopes and shattering disappointments that have defined the course of my disease. Without her, I very well may have checked out a long time ago. I'm stuck with myself and my situation, forced to experience the slow withering away of the "me" I once knew. Karen is here by choice; neither I nor any of my friends or family would have blamed her one bit if at any time along the way she had simply opted out. "In sickness and in health" sounds great in concept, but in practice it's one hell of a promise to keep.

Getting hit with a chronic debilitating disease not only affects the person with the actual diagnosis, but all of those around them as well. Family and friends all feel the concussive force of the disease, which radiates blast waves much like an atom bomb. The patient may be at Ground Zero, but those in close proximity can suffer terribly also, and the closer they are, the more grievous the injuries inflicted. It's not only the patient's life that has been forever changed, but also the lives of all who love and care about them.

The patient, at least, receives all of the attention of the medical community, and most of the sympathy of the world at large. The husband, wife, child, or friend who is suddenly redefined as a "caregiver" is too often overlooked, the tremendous burden they must now bear taken for granted, sometimes even by the patient themselves.

A quick trip through the many Internet MS bulletin boards and forums is all it takes to discover that not all spouses and life partners make the choice to stick around once the disease has bared its fangs. I've read countless heartbreaking tales of MS patients being left by those they loved and trusted, and yet others of spouses and lovers sticking around for a while seemingly to only make the situation worse, offering no support at all but adding guilt and resentment to the cyclone of emotion caused by the disease itself, like ghouls intent on tormenting the tormented.

The MS landscape is littered with the smoking wreckage of lives derailed and dreams shattered, of hearts crushed and realities trampled. I'm blessed to have the support not only of the incredible woman who is my wife, but also of a circle of friends and family who don't deny the reality of my situation, but refuse to let it overwhelm the foundations of their relationships with me. I only wish that every other patient was similarly blessed, as I've known far too many who have been forced to trod this agonizing road alone.

Happily, I've had the pleasure to meet other patients who have their own heroes. People whose spouses, lovers, and families are strong and brave enough to treat them, for the most part, as if the disease had never struck, but also wise enough to know when a helping hand or calming gesture is not only necessary but mandatory. Such qualities are impossible to learn, and it is a special breed indeed that possesses them along with the innate sense of how best to bring them to bear. They might not always know quite what actions to take, or what words are needed, but out of sheer love and devotion can turn potentially embarrassing moments into intensely comical ones, and can make the dehumanizing aspects of a dreadful disease a stage on which to demonstrate the best of what it means to be a human being.

So, I bow my head in praise and thankfulness to Karen and my dear family and friends, and also to Kim, Hilda, Marko, Jordie, Kirsty, Jon, Steven, and Allan, MS partners who I've had the privilege of meeting in the past few months; and to the countless others who I've not met and have never heard of, whose strength, love, and dedication have lightened the load and made the unbearable bearable, whose choice to stay in the game has made the game still worth playing.

These are the true heroes, for the most part unsung, but all worthy of blazing headlines and a most special Medal of Honor.

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  1. Damn straight!

    When we met you for dinner last week while I was being treated for CCSVI in Brooklyn, Kim and I arrived at the restaurant first. After a rush hour drive up to Manhattan, I needed to empty my bladder. Problem- my big iBOT wheelchair could not fit into the rest room.

    Kim and I surveyed the situation and came up with a plan. Long story short- I held myself up by grabbing whatever I could (doornob, countertop, Kim's shoulder) and Kim moved my feet for me one at a time, the 10 steps or so from the door to the toilet and back again. I was close to ending up sprawled on the floor a couple of times, but she propped me up (and I only outweigh her by 80 lbs). If that's not heroic, I don't know what is.

    It was wonderful meeting you and Karen last week. You are right. Despite our challanges, we are both blessed.

  2. Karen's indeed a beautiful person; I suspect she wouldn't even consider not being by your side through this. On one of the arthritis forums, I do see many people express that their spouses don't understand the extreme pain that prevents activity or, worse, that the illness has ended their marriage. I feel very fortunate that my husband and kids do see and do understand that for me it's not just a little bit of arthritis pain, but truly debilitating and agonizing. I don't know how I'd cope without understanding, as many have to do, with accusations of laziness or not trying enough.

    I think the heroes are the people who stick by us and continue to support us--many won't.

    I've not had people use the word "heroic" with me, but I hear brave and inspiring--I am not at all brave, and often I can't do much at all. But may I suggest that the work you do now is as important as the work you were paid for? Being part of the MS/disability community, giving people a place to share, and getting information out to people means a lot to others and makes everyone less alone in this.

  3. Wow! I guess that says it all. Well done Marc.

  4. I am sitting here enjoying my morning coffee with tears in my eyes after reading about your hero, Karen. My hero is my husband Paul. Thank you for the reminder of his strength and love. You truly have a gift with your words.

  5. My wife Gwen is a hero as well as my kids Corey, Paige and Philip who remember what their their dad used to be like. I remember (years ago) playing with my oldest, he wanted to be Superman. I asked which superhero I should be, his response will stay with me forever "Your Dad, you already can do all those things." I really couldn't leap buildings in a single bound, but it gave me a different view of heroes.
    There are heroes all around us and we can be heroes if we build eachother up. True heroes never tear down only encourage and help. While our bodies may be deteriorating, we can still be cheer leaders (without the oufit, I don't have the legs for it). We can still encourage those we come in contact with everyday, we can still be heroes.

  6. When it's all about love, there is no what to do or should I stay. I'm a mom whose son has MS, and I'll be at his side until my earthly journey ends..and then some. And, he's got a wife like yours...heroic and loving, loyal and determined.

    And, you are a hero if simply for being you and sharing your real thoughts with all who travel the same road.So is my son.

  7. Marc - Great post ! I, too , am married to a woman
    who has been through the thick and thin of the
    last 30+ years of my slow and steady decline...endless visits to doctors , chemo ,
    injections eic. She has been steadfast and unwavering for most of this crazy ride and I feel truly blessed to have such a partner...we have two beautiful children who have lived for most of their lives with this 'beast'( the MS, not me ! )
    and I count my blessings every day for their
    gifts... it's better than any medicine that's for thanks for acknowledging the heroics
    of the care-givers and loved ones who have their
    own burden to bear in this process. My best to all Cheers

  8. "...who don't deny the reality of my situation, but refuse to let it overwhelm the foundations of their relationships with me"

    I was trying to explain to my mother this morning about the qualities of the few people who remain in my life and can deal with the progression of my illness. I wasn't too successful and then I read this. Well said.

  9. Truly a beautiful post!
    In my case it is my husband and daughters who are my heroes and also my grandchildren whom are learning from their examples.
    In my case my husband Garry. has stuck by me through all 32 years of my life with MS and for 2 years previously before it reared it's head. Thank God for our "Heroes" I cannot imagine this horrendous journey without them.

  10. Lovely post, Marc. God bless you and Karen.


  11. I'm in a funk. While I love the hero in my life of 27 years, I don't want to feel indebted to him either. I find myself not wanting to disagree with him because I owe him so much. Is my new role just to be grateful and quietly stew about regular life things that just plain old bother me?? That's what I'm struggling with right now--the erosion of my personality that once had a spark to it.

  12. Marc, I think we know a hero when we "see" one. And you and Karen are a match.

    Thank you for mentioning Allan, who was a gift to me after my diagnosis, yet did not run when I told him at the outset how things stood (or might not stand). He puts up with all different facets of my MS, with my moods (I have plenty), and helps me recognize when I just need a good lie down.

    I appreciate all of your posts, and hold you and Karen in my heart.

  13. Okay, so now I am overwhelmed with a jealousy that almost consumes me. I was married for 24 "healthy" years to a man who consistently denied my illness and made me feel like a malingerer. He also left me to do all the child rearing, house maintenance, financial management, life management. When I finally gave up and left, he was immobilized for a year, unable to do anything. partly my fault, but he was a workaholic and I was an enabler.
    And so here I am, alone, wondering how much of this MS thing I can share with my new friends. It takes a lot to take on a 50+ woman with health problems, no matter her benefits. We all know it's going to go downhill from here. I have a fellow who seems to care, but he tells me right out "I'm not much good on the sympathy thing"....sigh.
    So, not looking for a pity party (perhaps a drive-by for my ex...;-)) but just to say, I'm glad to see gratefulness for your supporting partners. Remember to give them a break, and take help from others when offered. And love them hard, hard, and gentle gentle and don't forget they have challenges of their own.

  14. Here are Encarta’s definitions of a hero and how they might apply to you. And, yes, your wife is a true heroine by any definition of the world.

    1. remarkably brave person … it shows up every time you write honestly about your challenges and how you come to terms with them, as well as in your indefatigable search for solutions/cures for this #*!@ illness.

    2. somebody admired … from the list of your followers and commenters, you obviously have many admirers.

    3. main character in fictional plot … you have to write that novel

    4. man with superhuman powers … you demonstrate this every time you contribute to our dialogue and, probably also, in your daily life as you cope with getting past your physical challenges

    5. mythological Greek heroine … well, maybe you don’t qualify using this definition


  15. Hey, I have heroes named Marko, Kirsty and Jordie too! It's a small world ;)

    I find I have to encourage my husband to have some fun of his own because he will always put me first. I am so very grateful to have such a great family, circle of friends, and caregivers who keep coming back to give me more.

    I'm so glad you have Karen and there are a lot of others that have their heroes.

    My husband's birthday and our anniversary have become very special days for me (I've never bought in to the Valentine's day thing). Yet I try to make sure that every day, he knows how much I love him and appreciate his support.

    I just had to remind him yesterday that he needed to take some time off work next week to take me to the hospital for a really painful procedure. He booked off 1/2 the day so he could take me for a nice lunch first. See? A hero.

  16. Enjoying-wow, didn't know that story about your "trek" to the restroom. Kim gets extra hero credit for that one. It was wonderful meeting you guys too...

    Frida-I think the pain from your arthritis must be similar to the pain from my avascular necrosis. It's impossible to convey how absolutely wearisome chronic pain is. I'm glad you have your own set of heroes, because someday simply getting out of bed is an act of courage.

    Charlie-thanks for the kind words, glad you appreciated the post.

    Red-I hope the tears didn't make your coffee too salty. Be sure to tell your husband how much you love him today, sometimes it's too easy to let those things slip...

    Jim-I'm sure your son still thinks of you as a superhero. As for the cheerleader thing, I have a feeling we all would make quite the peculiar cheerleading squad, but what the heck, shish boom bah...

    Hilda-your devotion to your son is inspiring. My mom is equally devoted, and sometimes it's a mothers love that can be most easily overlook. I need to let my mom know more often how much I care, and how much she means to me...

    tompap- it is indeed a crazy ride, and you're right, the support of our loved ones is the best medicine, especially since all of the medicines for MS suck. Thanks for sharing your thoughts.

    biblio- I'm glad my words were timely, and I hope you could put them to some use. It is sometimes very hard to explain the qualities needed in those that stand by us.

    lavmac-I'm happy that you have such a wide net of love and support. Thanks for the kind words about my post.

    Lynne-thanks for the lovely comments, and for being one of my earliest readers. It's been an interesting year, and I truly appreciate your contributions.

    Jo-Ann-his loss, for sure! It's terrific that your kids and friends keep you surrounded with affection. I like your attitude...

    anonymous-you speak of a problem I think we probably all deal with. Sometimes we have to let the every day annoyances slide, given the enormity of the contributions our heroes make. On the other hand, we can't let our own priorities be dismissed. It's a fine line to tread.

    moondot-although I can see that Allan is quiet by nature, his affection for you shines through. He was one of the first other "heroes" I met, and you guys have always made a lasting impression...

    Dabble-I'm sorry that you find yourself in a lonely situation. Sometimes we find ourselves in heart rending situations, but the only way out is through. I sincerely hope that you find someone to share the load, who doesn't have much of a problem with "the sympathy thing". Be sure to keep your eyes open, you never know when the universe might have a hidden surprise for you...

    Judy-thanks for the lesson on all the nuances of the word hero. Still, I can't think of myself as one. I simply get up every day and do the best I can, some days better than others. With all of these wonderful comments, though, you guys are certainly making a bid for hero-dom.

    Weeble-jeez, what a coincidence. You and your family simply exude love and affection, and Marko is a hell of a guy. Your kids are no slouch is, either, and despite your physical troubles, I know that you are a thankful person. And I'm thankful to know you...

  17. Thank you, being married to the best man in the world with a little extra MonSter on board I was very moved and very touched by your kind words and it helps.....And I guess I am not the only wife or husband feeling that!
    Again "Danke schön" Ines, Bavaria

  18. its nice to have found you...i have been living with ms for 20 years. since the age of 19...i was never that bad off but in the last 6 years things have plunged. anyhow...i have one of those heros for a wife too...for 17 years she has put up with me...

    it was also nice to see im not the only one that has badder issues..."Enjoying the Ride" made me feel better about my "pee fountain" that seem to be finding its way out of my pants as of late.

    anyhow, i found encouragement in you blog... is mine...lets just say you are a bit more refined than me!


  19. Marc,

    Thanks for making room to include all of our heroes. Karen is amazing. You are a lucky guy.


  20. Marc your words are so true. I have felt like a burden on my family for the last four years but never once have i been remotelt treated like one. My wife, my Mom, my kids, I am one of the lucky ones. I mourn the life i was supposed to have;they never even think it. Thanks for putting the words together. I am printing it out and posting it on the fridge! Youre right on brother.
    -The Greek

  21. Don't kid yourself, buddy. While Karen definitely is in the Remarkable and Beautiful People category, you are absolutely a hero to me.

    The fact that you face each day and keep searching for that elusive successful treatment and share your life and courage with all of us makes you a hero in my eyes.

    When I am feeling sorry for myself (a favorite occupation) I think of you. You, who live with such grace and dignity. I know you have your moments, but you are an inspiration.

    I am so honored to have you as a friend.

  22. "...The husband, wife, child, or friend who is suddenly redefined as a "caregiver" is too often overlooked..."

    You forgot parent. My 71 year old mother is my caregiver and my hero....and in the disarray of a day in the life of an MS patient, she is indeed very often overlooked and taken for granted. I will remember to tell her today how much she is loved and appreciated..and make sure that I tell her that often.

    I have only recently discovered your blog....and I have found every word to be a gem. Not only has it been cathartic for me, but I also refer my loved ones here to read your words which describe exactly how I feel and what I have been trying to say, but have never been able to find the right way to say it…..especially as powerfully as you do.