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Receiving a diagnosis of multiple sclerosis, or any other dire illness, instantly transports a person to a very lonely place. They are suddenly no longer one of the "healthy", but are now marked by disease. A psychological shift occurs as the freshly minted patient grapples with their new reality. Although they might have been feeling unwell for some time, most folks are quite good at denial, so much so that many simply ignore their early symptoms, rationalizing them as inconsequential quirks, and proceed to get on with life, whistling past the graveyard as they go.
Back in the summer of 1995, I remember suddenly feeling the unmistakable sensation of liquid running down my left thigh, and I wondered for a moment if I was somehow inadvertently peeing in my pants. Reaching down, I felt that my thigh was dry, so no, I had not abruptly become incontinent. After a day or so, this weird sensation subsided, but in its place was a distinct numbness on the front of my thigh, stretching all the way from my hip to my knee, a lack of feeling that persists to this day. Given the fact that I was a world-class hypochondriac, you'd think that this disturbing symptom would've sent me in a panicked sprint to the nearest doctor. But no, I chalked my numb thigh up to a little fender bender I'd been in a few months earlier, and simply attributed the lack of feeling in my leg to some kind of pinched nerve or something. End of story, or so I hoped.
Eventually, though, after years of mounting warning signs and an increasing awareness that something just wasn't right, I developed a limp in my right leg, a symptom that couldn't be ignored. After seeing a number of doctors and undergoing a series of tests, I was finally shown some MRI images that clearly depicted a large lesion at the base of my brain stem, and was told I had MS. Whammo, I was plucked from the world of the healthy and forced into a scary new place, without so much as a parting gift or a welcoming orientation. I was confused, frightened, and, despite being surrounded by loving family and friends, suddenly quite alone.
No matter how genuinely well-meaning and caring the people around me were, there was simply no way for them to really understand the maelstrom of emotions that was roiling inside of me. Outwardly, I remained relatively calm and in control. Oh, I had my moments of gushing anguish and despair, but for the most part I maintained a façade of normality. Inside, though, it was as if I'd been gutted, and I felt like I was drowning, gasping for air. All of the sympathy and words of encouragement being directed my way were of little comfort, and in some ways made me feel even more singled out. Worse yet was the awkwardness of folks who decided it was probably best to leave my situation unacknowledged, and to act as if nothing had changed. While this might sound great in theory, the key word there is "act" as if nothing had changed. Suffice it to say that most people are very bad actors.
I deeply appreciated the declarations of support and affection that I received in the wake of my diagnosis, but, as beneficent as they were, they did very little to dampen the effects of the emotional nuclear bomb going off inside of me. The plain fact was that in some very real ways I was now quite alone in a crowd, as I was going through an experience that the members of my crowd not only had no personal knowledge of, but actively dreaded. Human beings are pack animals, tribal by nature, and despite being surrounded by people who genuinely cared, I was now a tribe of one.
Thankfully, I soon enough found salvation in the form of Internet chat rooms and forums. The web has a lively community of MS related sites, and although I at first felt like an intruder, reading much more than participating (lurking, it's called in forum lingo), before long communicating with fellow patients on the Internet became an elixir, and one that was quite addicting. Finally, a conduit to people who simply got it, who felt many of the feelings and experienced many of the experiences I was now going through, from whom I could learn and with whom I could share information and commiserate, no explanations necessary.
As my disease has progressed, and I have become more disabled, the need to communicate with others in similar situations has become even more vital. Like members of a secret society, we share hidden knowledge, from the indignities suffered courtesy the often maddening world of modern medicine, to the daily struggles of just doing things that not so long ago were no struggle at all. I recently had a conversation over lunch with another wheelchair person, during which we marveled at the fact that at some point in the past we'd been able to wake up, get showered, dressed, and out of the house in 45 minutes. Nowadays each of those acts could easily take more than 45 minutes, not including the periods of rest needed between each one. How could a healthy person ever really understand what it's like to try to make your way through world in which everyday objects have been turned into obstacles, from trouser buttons to socks to doors to utensils, all once mundane items now transformed into puzzles as complex as a Rubik's cube.
Fear is another factor that binds us, and what a tremendous relief it can be to talk to someone knows just what it's like to be left staring at the dark at the end of the tunnel, who has lived through those desperate moments when the worst-case scenario doesn't seem so far-fetched, when all of your best efforts at living in the moment and maintaining a stoic detachment temporarily evaporate and the ugly reality of the disease and its destructive capabilities breathes its rancid breath down your neck, whispering vile threats in your ear, threats which are far from empty. We're only human, after all, and despite our strongest efforts, such thoughts are never really all that far from the surface. When the conversation does turn to such matters, although very often laced with a heavy dose of gallows humor, the topic is usually discussed with frankness absent all denial, and speaking of what is sometimes considered unspeakable renders the sentiments expressed far less ominous than leaving them to fester in the dark recesses of the mind.
Yes, it takes one to know one, and despite the heartfelt gratitude I feel for all my healthy loved ones, friends and family alike, who have helped me get through this ordeal, the ability to connect with others who share an unwanted membership in our hideous little club has been absolutely vital. More often than not we laugh in spite of and at this insidious disease, defiant in the face of our shared adversity. We celebrate each other's victories, and mourn each other's losses, comrades in arms for the fight of our lives. Through the Internet and through this blog I've met many such folk, even if only by e-mail, and to all I say thank you, for understanding, for filling the void, for your courage and your kindness. My diagnosis may now be up in the air, but that doesn't change the inner or outer struggles I've experienced in dealing with my disease. As they say, a rose by any other name…
Now let's give this thing exactly what it deserves, a good swift kick in the ass, and if you can't kick then scratch its eyes out. Don't forget, living well is the best revenge, so live, my friends, live.
Thank you for your friendship, wisdom, honesty, and leadership. A nuclear bomb is an apt metaphor. So is tsunami. That anything of value remains in the aftermath is shocking and yet startling pieces of gold keep emerging from the rubble, and finding you on the internet has to be one of the largest nuggets I have found.ReplyDelete
YOUR POST TODAY IS NOT ONLY THE DAILY DOSE OF VALIDATION THAT WE EACH NEED, IT IS ALSO THE ARM EXTENDED THAT I NEEDED TO GRASP ONTO TO BE LIFTED FOR THE DAY. AND WHEN THE NEW DAY COMES, I WILL GRASP IT AGAIN.ReplyDelete
IT SEEMS THAT JUST WHEN I THINK I CAN MUSTER UP THE STRENGTH TO FIGHT THIS MONSTER, THE NEW DAY BRINGS YET ANOTHER CHAPTER I MUST "ADAPT" TO. HAVING TO GULP DOWN FEAR OF THE UNKNOWN AND BE A "FIGHTER" FOR THE SAKE OF THOSE AROUND ME. HERE WE GO AGAIN.
IT IS PRETTY MUCH WHEN I AM ALONE, I CAN CLICK OPEN YOUR PAGE TO BE ASSURED I AM NOT ALONE AFTER ALL.
YOUR WORDS ARE ALSO THE DEEP THOUGHTS STUCK INSIDE OF ME.
IT IS WITH MY UTMOST GRATITUDE THAT I SAY THANK YOU. ACROSS THE COUNTRY OR NOT, YOU ARE PARKED NEXT TO ME THIS MORNING GIVING ME JUST THE RIGHT INSPIRATION THAT I NEED TO ALSO KICK AND SCRATCH WITH MY COMRADS.
As you see from the above comments, for some of us 'living well' has quite a bit to do with the presence of you and your gifts. Thank you..thank you..
Thank you Marc.ReplyDelete
I'm extremely grateful and humbled by your words. You truly make the day brighter for me. Thank you.ReplyDelete
You described exactly the way I denied all my symptoms until close to diagnosis. I laughed out loud at your 2 month old car accident explanation. Oh yeah, a "pinched nerve" has served us all well!ReplyDelete
The one good thing about being in a family full of autoimmune diseases is that, by the time diagnosis comes, you've already considered it. (What family member of someone with MS or PSC or CAIH hasn't thought, "What if I get it too?)
When my foot started to go numb, I walked in to the doc's office telling her I thought it might be MS. Despite that, she didn't test and came up with another, more benign solution--which I was all to ready to accept until the numbness began to creep upwards.
The second doc was also told my suspicions and she got right on it. By the time I got the Dx, I just nodded and said, "ummhumm."
Thanks Marc--another great WK post!
I was at an MS group for male patients when a guy told me advice I will never forget, "Until you can laugh at a new MS symptom, it owns you. The moment we can reduce MS to a joke, it loses all it's hold on us. It is simply another line in our life's stand up routine."ReplyDelete
I usually tout out that advice when talking about Le hermites sign I had for around 9 months. Thing is, I only felt it as a tingling in my groin when I looked down to the ground...so I usually felt it when I was picking up dog poop. I mean come on! A tingling in my groin should be a good thing, but do I have to associate it with dog poop of all things?
Thanks for the post. I am forwarding this on to somebody just diagnosed as it speaks to a frame of mind we all need. Acceptance and understanding are in high demand and short supply, and this post is the type which grants the feeling of belonging and understanding for many traveling the path.
Marc, as usual a great post!ReplyDelete
Have you ever considered going a step further & giving people like us some insight as to how you have overcome your day to day struggles? Some of us may benefit from your idea's/remedies, coming straight from the horse's mouth! I know that each of us is different with our symptoms, but, your input to all of us that follow you maybe beneficial to some.
Anywho, keep up the great work, I so enjoy your posts and do not miss one! KIM
To my favorite lunch buddy, thanks for letting be part of your club. I love laughing with you and wish we didn't cry together.ReplyDelete
WK, your closing comment where you share the wisdom to live, my friends, live. Sparked recollection of distinction spoken by the most interesting man in the world, who always closes with a trademarc line of 'Stay thirsty my friends'. A man who once had an awkward moment just to see how it feels. A man who's personality is so magnetic, he is unable to carry credit cards.ReplyDelete
Your wit and humour reminded me of this iconic Dos Equis man.
One more. "he once challenged his reflection to a staring contest, and on the third day he won.
I found it amusing and had to share. That's all for now. Stay thirsty my friend.
Humour does distance me from this uninvited guest.
Thanks Marc, well said. Yes, it's a lonely journey, certainly moreso when a wheelchair and other appliances single us out in the crowd. Love your inspirational and real posts. Steve (Tasmania Oz)ReplyDelete
Even though I don't leave comments as often as I used to, I remain a loyal follower of your blog. Your depth of compassion, insight, humor, intellect and marvelous ability to connect with people on such a deep and profound level post after post after post, continues to uplift and strengthen me. All I know is that this world, (the world of MS and otherwise) is a much better place with you in it.
"although very often laced with a heavy dose of gallows humor"ReplyDelete
Ya, my favorite gallows humor comment concerns what a lucky thing it is that we live in this day and time. Survival of the fittest means that were it prehistoric times, we would be sabertooth fodder. ;p
I am relatively new to the blogging world, but not to MS. My diagnosis came 27 years ago, but reading your post made it feel like yesterday. Thank you for your firm stand and your clear prose. I am learning a new freedom amongst fellow MS-ers. Even though there may be much love in our lives, it is still a lonely place with this unwelcome disease standing so close by.ReplyDelete
Marc, my journey is made all better by reading your posts. You are spot on as per usual. Thank you.ReplyDelete
Connecting with other MSers, both in cyberspace and face to face, has saved my psychic bacon! There's a great, big hole in the middle of my being that can't be explained in plain terms. If I had to deal with this crap alone, aside from my DH, I'd have gone off the deep end for sure! Our kind understand everything from the zaps, zings, water rushing down legs, etc., to the bigger stuff like immobility, cog issues, blindness,and on and on...ReplyDelete
Thanks for letting us hang with you, my friend! Your posts are so articulate and right on. You're helping me keep it together.
Wow-- Amazing, how someone a continent away could write and post something so incredibly relevant to what has been gnawing at me recently... A few days ago I commented to a friend that so far I'm finding MS... lonely. This clearly made no sense to her and she made (reasonable, valid) noise about support groups. But I was left lonelier for having tried to describe how, in my everyday life, having this silent, invisible "other" constantly shadowing me is" isolating. This new "consciousness" is nothing less than bewildering. And rather than say to my husband, "My vision just went again" or " Huh, my leg is stone numb" I keep quiet and experience it alone, not wanting to be "constant sick and needy person." But then our realities become that much more separate as a result.ReplyDelete
Thanks again, Marc. I live alone, use a w/c, have had ms 12 yrs. I am extremely self-sufficient, but sometimes the fear surfaces. I find you words are the most helpful I've read.ReplyDelete
Any suggestions as to how to find like-minded souls on web sites?
Judy-thank you so much for your generous words, and for your continued contributions to this blog. I am constantly astounded by the reach and impact that my words seemed to have, and this experience has been my nugget of gold pulled from the rubble…ReplyDelete
Anonymous-I'm touched by your sincerity, and moved by your gratitude. This is a very difficult monster to fight, as it never seems to stand in one place. It's hard to accept our losses when there always seem to be new ones to grapple with. Nothing to do, though, but keep up the fight, both for those around us, and for ourselves.
Cathy-you're very welcome, the reaction to this blog has been an almost surreal experience. I certainly never expected my posts to be read by more than a few dozen people, and to think that my fellow battlers not only read but use them to help the fight is humbling beyond words. So, thank you, all of you, from the deepest parts of my soul…
Dave-whatever strength or support you find on these pages, always remember that it's you that controls the brightness of your days. Perhaps some of my posts might provide the tinder, but you are the match that sets it aflame.
Daphne-I too have a family history of autoimmune disease (my mom has type I diabetes), and I suspect that had something to do with my well practiced hypochondria. Still, I never expected this, though I wasn't shocked that I wound up with some chronic illness. Despite my imagining getting bad news from a Dr. for many years, when the experience actually manifested itself, it did seem like I was transported to a different reality. If only we all could chalk up our problems to "pinched nerves"…
Life-yes indeed, "it is simply another line in our life's standup routine." This disease does emphasize the importance of having a keen sense of the absurd, which really is essential for all sentient beings, healthy or not. Often it seems that we are nothing but the playthings of the cosmic pranksters, and I often feel like the punchline of a practical joke pulled by the universe. As for the dog poop-groin tingle connection, well, it doesn't get more absurd than that…
Kim-my adaptations to the changes wrought by my disease seem to constantly evolve, as the disease never wants to stand in one place. Many of my "fixes" are so specific to my physical state and individual environment that I'm not sure how they'd translate to a wider audience. I will give it some thought though, and maybe even put up a post asking people to contribute their own tricks of the trade. Thanks for the inspiration…ReplyDelete
Michelle-I think that the fact that we can cry together is what makes the laughing all the more enjoyable. Thanks for being a real friend…
wasagaman-I love the "most interesting Man in the world" commercials. Thanks for sharing, you made me smile.
Johnboy-wow, a comment all the way from Tasmania. I've been reading about the strange cancer that is destroying the population of Tasmanian Devils, such a tragic thing. But, back to your point, yes, it can be a lonely road, and sometimes it seems the natural instinct is to withdraw inward. But that only makes things lonelier, so sometimes we must fight that instinct and seek out connections to others, if only to maintain our sense of humanity.
Lynne-you are among the first to comment on any of my posts, and the fact that you stuck with me all these years must mean that I'm doing something right. Thank you for your generosity of spirit, and lots of love right back at you…
Sue-even just a few decades ago, our existence would be far less pleasant (if you can even use that word) than it is today. MS used to be considered a "diagnose and adios disease", because there was absolutely nothing physicians could do to even help alleviate the symptoms. Despite all of our frustrations with modern medicine, at least now we've got their attention. Even if it is primarily because they can make a fortune off of us…
WritingMS-welcome to the blogging world, please feel free to e-mail me with any technical questions (not that I'm a technical whiz, but I've learned a few things from experience). We have been cast a strange lot, so many of us surrounded by friends and loved ones, yet also very much emotionally alone in our day-to-day experiences. It's a hard place to be…
Lee Anne-thanks for your kind words. I'm glad my posts have eased your journey.
Lisa-it is an incredible relief to find people who just "get it". I often find myself unable to muster the energy to fully explain the situation to folks on the other side. It's extremely gratifying to know that my thoughts are shared by so many others, so thank you for letting me hang out with you, too.
Sadie-you've summed up the situation very well. It's very difficult and frustrating for those who care for us to understand that they can never really understand. We are often forced to internalize many of the negative thoughts and emotions we are feeling for the benefit of those closest to us, not only to spare them the pain of hearing about our pain, but also because of the fear that we might alienate and chase them away. I find that sometimes the line between rational and irrational becomes extremely hard to discern, I suppose because we're all making it up as we go along, stumbling down the road of MS. Thanks for your comment.ReplyDelete
Anonymous-there are a number of very good MS forums on the net. One of the most popular is MSWorld, and another is MS Refugees. I'm sure a Google search will direct you right to them. MSWorld has thousands of members, and lots of sub forums that specialize in specific topics related to MS. I've posted several lists of Internet MS sites, called "MS on the Internet". You can find them in the popular posts list on the right hand side of the blog.
Andrea-thanks for your praise and kind words. One of these days I suppose I should get around to trying to get some of my writings published. The task seems kind of daunting, but I suppose once started I'd eventually get it figured out. Thanks again for your comment…
Marc, as always thank you for your thoughts. I would like to make you aware of our MS support group blog and specially point you to the newest post. It describes how I have finally found a way to stop the MS progression.ReplyDelete
The blog's address is http://mssggc.wordpress.com
Ellie in WI