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"People come and go, and forget to close the door, and leave their stains and cigarette butts trampled on the floor, and when they do… Remember me, remember me"
There are several phrases that when heard or uttered can forever change the course of a life. "You're hired", "I'm in love with you", and "I do" are a few of the more common, all imbued with the power to positively alter one's destiny. On the flipside, there's a multitude of words that, when strung together, can have a negative, even dreadful impact. Those of us dealing with serious illness have all heard variations on the same devastating words streaming from a doctor's mouth, something along the lines of, "I'm afraid you have (insert name of illness here)". From the moment those syllables are comprehended, we are suddenly singled out, set apart from the world we inhabited just moments before, the land of the well.
No matter how loved or popular the recipient of such a diagnosis may be, they've now been forced into a new and alien social strata, that of the chronically ill, an exclusive club to which nobody wants to be a member. Though friends and family offer heartfelt and genuine gestures of comfort and sympathy, there is simply no way for them to truly understand the disorientation, fear, and alienation wrought by the verdict recently rendered. The newly minted patient, even if surrounded by a crowd, is left to navigate a frightening new reality in large part alone.
Make no mistake, the support of friends and family is vital to the mental and physical well-being of a newly diagnosed patient, but that moment of diagnosis does serve as a line of demarcation between an old reality that was very likely taken for granted and a new one fraught with uncertainty. This crisis point in a person's life can test old relationships, and unexpectedly offer opportunities to build new ones.
Over the course of a lifetime, there is a natural ebb and flow of individuals entering and exiting a person's world, an ever shifting population of friends and acquaintances that inevitably changes with the passage of time. A precious few of these people take up permanent residence in the timeline of life, and transcend friend to become family. True family is defined more by love than by blood, and I consider myself blessed to count among the innumerable persons I've encountered perhaps half a dozen who I know will be constants for the whole of my life. We may not be in perpetual contact, in fact we may not talk for months at a time, and perhaps not meet in person over stretches lasting years, but I am secure in the knowledge that when push comes to shove, no matter the situation, we'll always be able to pick up just where we left off, our bonds too strong to be broken by the strains of time, distance, or circumstance.
These rare relationships, some of which have spanned decades, are cherished and acknowledged as precious, for I realize they link me not only to people that I hold dear, but also represent a tangible connection to my own past, confirmation that what came before was not merely a dream, but a series of very real experiences that I was lucky enough to share with some special individuals. Though I've only been diagnosed for eight years, at times it's hard to remember a life without illness, a time when I was blissfully ignorant of most things medical. These friends turned family, who are of course deeply sympathetic to and aware of my difficulties, look straight past the fact of my illness to the essence of who I am. To them I will always be the same old Marc, and for that I am forever grateful.
Other friendships from my healthy life have been diminished by my illness, really at no fault of the people involved. Many friendships thrive primarily on a continuing series of shared social experiences, and as my disabilities have mounted and my ability to socialize has become curtailed, the spigot that fueled many of these relationships has been turned off. Phone calls and e-mails are still occasionally exchanged, and halfhearted motions are made at making plans to get together, but they almost never actually come to fruition. That's okay, really, as without an ongoing narrative, some relationships are bound to simply stall, and eventually wither. It's all part of the rhythm of life, the natural order of things.
In this age of the Internet and social networking, it's now quite common to reestablish connections with folks who once populated your world, but were long ago got lost to the ever shifting tides of time. I've found that most of these renewed friendships at first burn brightly with shared memories and updates on current circumstances, but once that initial flame is exhausted, they again recede into a state of benign neglect. A few, though, have turned out to be very happy and lasting reunions, with people for whom I never really lost affection, but only lost touch. It is a real joy to rediscover a misplaced but valued friend, like unearthing a buried treasure.
In all honesty, though, my illness has made me somewhat reticent to pursue some of these Facebook friendships, as I sometimes think I'd rather be remembered as the youthful and healthy me locked in my old friend's memories, and recounting the details of life since my diagnosis hardly makes for a lighthearted exchange of pleasantries. Perhaps this accounts for my almost phobic relationship with Facebook, which I suppose it's time I should just get over. I'm completely open about my illness with the world at large, after all, but somehow the prospect of detailing my saga to certain individuals remains daunting. Though I feel I've handled the emotional upheaval attached to illness quite well, I suppose the pain of my reality lies not too deeply beneath my Wheelchair Kamikaze persona.
Despite the love and support of family and trusted old friends, it's been incredibly important for me to develop relationships with fellow patients, others who simply "get it". As kind and sympathetic as the well people close to us might be, they just haven't lived the situation, and thus don't have the capacity to fully gauge the true measure of being chronically and progressively ill. It's like trying to get a blind man to understand the difference between blue and orange, the complexities are beyond words.
I can't imagine how difficult it must've been for patients dealing with chronic illnesses before the advent of the Internet, how isolated and alone so many must have felt. Soon after my diagnosis I discovered some of the Internet MS forums, and in them found a haven where was able to interact with others dealing with many of the same questions, fears, and emotions that were roiling inside of me. I derived incredible comfort and relief in these virtual worlds, populated by so many who had gone through situations similar to those that now confronted me.
I initially ventured onto these forums seeking only information, never imagining that I might find real friendship in the coldness of the words of strangers on my computer screen. But soon the anonymous screen names of those participating took on the characteristics of the living, breathing human beings behind them, and the catharsis of being able to commune with fellow patients was incredibly therapeutic. Before long it felt like some of my best friends were people I'd never actually met or even talked to. When I did eventually have the opportunity to meet some forum members in person it often felt as if we'd known each other for years, unencumbered by the awkwardness of unfamiliarity that usually accompanies first encounters.
Of course, not every MS patient is going to become a close friend, but I found that the shared emotions of dealing with a serious diagnosis can often strip away much of the artifice and posturing that goes on in every day social interactions, and patient to patient we can often cut right to the chase and dispense with most of the meaningless trivialities that get in the way of establishing the bonds of true friendship. I've developed heartfelt relationships with people I might not otherwise have interacted with, folks in locations and with backgrounds that I might never have crossed paths with or given a chance to without the unfortunate commonality of a shared disease.
When eventually we take our leave of this earth, as we all must, the friends we've made and the people we've touched are perhaps the truest measure of the lives we've led. Despite the hardships imposed by disease, and the impersonal nature of the medical world we've been forced to inhabit, we must never lose sight of our essential humanity, and relish and take joy in our close friends, old and new. Even in this high-tech world of instant messaging, Facebook, and tweets, a pat on the back, some gentle words of kindness, and an earnest gesture of support still convey that most important of human sentiments, genuine affection for those we are lucky enough to call friends.
You hit the nail on the head Marc and while your body fails you, your mind does not... love your work!ReplyDelete
Yes, the internet has made a big difference in reducing the sense of isolation MS can bring. It does not though eliminate the inside job required to overcome self-imposed limitations. I am finding this out as I struggle with whether to join my able-bodied peers for a three-day weekend. I don't want to measure myself against what they oh so casually are able to accomplish. I don't want them to think of me any other way than how I used to be ... and still want to be. Yeah,it's an inside job, but perhaps it is also realistic. As you point out here, the interaction seems to wane as the lack of physical common ground becomes increasingly apparent. And I guess that's yet another loss I'm not willing to acknowledge yet. As of now, I'm not going to the reunion.ReplyDelete
I consider you, through your writing, a valued, virtual member of my MS Scaffolding Team.ReplyDelete
Great post Marc. For some strange reason that I haven’t quite figured out yet I have felt a strange kinship with you right from the start. Your words are so genuine and from the heart that it’s hard not to like you. Thank you for helping me make sense of this insidious disease and with the world in general. Still hoping to actually meet you some day,ReplyDelete
You got this exactly right!ReplyDelete
It is a lonely disease for me. I've given up so much physically (and this saddens me) but also it doesn't just take from me all at once, but does it slowly, in degrees. Thus, I'm in almost continual mourning. I can't just mourn, accept, and move on...I mourn over and over. And this angst, this sadness, wants expression. And my friends, my family, my husband, my children, they don't want to hear it. They are tired of hearing it. "Can't you ever just be happy?" "Why are you always so negative?" I try. But depression is not just a by-product of MS, it is a symptom. So I struggle with not only the sadness of loss, but with my brain, with the disease itself, weighing me down. I try. I continually try. I push forward, keeping occupied, I eat healthy, I exercise as I can...but sometimes I just need to be sad. And people are not comfortable with sadness. I'm trying, really I am.ReplyDelete
Another very great post that I can so relate to.After I was dx'ed in 1985 I spent 14 years as a white water rafting guide and I was an avid skier and back packer and spelunker.Most of my friendships were developed around these activities.As my ms has progressed I have not been able to do any of these things any more.I think I miss the friendships I developed doing these things more than the actual things I did.
Ms can be a sad lonely disease.
The internet has not filled the void of the companionship I use to enjoy but it is a great learning tool.
Brian Eno is one of my all time favorites.
Thank you Marc,
Scott from way upstate NY
If only I had received from the doctor the statement "I'm afraid you have X." Instead, the first thing the doctor told me (over the phone no less) was "I have some bad news." 7 simple words followed by a long pause. In a split second your mind scatters, trying to catalog every horrifying disease possible, running through a list of known and speculative unknown diseases. What is it that makes something "bad" exactly? I imagine there are all variations on bad and so your world will slowly adjust to living with the new bad My transition to the chronic illness world was rough. I now look for doctors who are blunt and simply pass the information on, without dragging it out.ReplyDelete
Thanks Marc for your thoroughly readable and inspiring blog. Wise words. I think you should gather these blog entries someday and make a bookmout of them!
Marc, I teally
As usual your post are great! i look forward to your weekly posting, thoughts, rants & everything in between! I have often pondered what people did prior to the internet; how lonely they must have been. I no longer work, but I try to stay busy and the internet is my best friend! Not only do your friendships evolve as a result of MS, they also do so if you have no health issues; we just discussed this last week with our adult son! Keep up the good work Marc.ReplyDelete
Marc, as always you are a voice I can't find for myself. I know very few people in the flesh with MS but my virtual friends on the internet have helped me so much. I have lived for so long in denial that MS was even a part of my life. Reality hits and it hits hard and makes you realize that you cannot ignore things forever. It is easy to share with people who are like us and understand and the internet has made it possible to meet and get to know people we otherwise would never come across in our everyday lives is so true.ReplyDelete
Take care, Joanne
I have a MS friend who woke up the other day with double vision. So she called an ambulance and went to a local hospital. They have her scared to death thinking she has brain cancer. She is now going to a bigger hospital but it looks like she has MS! She has had it or least a dozen years wouldn't you think that might occur to them before they scared her to death?ReplyDelete
as always, worth reading, and sharing, more than once. MS is a lonely disease, and just sharing thoughts on-line makes it a little more bearable, thanks Marc, keep up the great writingReplyDelete
I plan to send this to my close friends, because this my friend is as good as it gets! I have the opportunity to speak with some new docs about dealing with a chronic illness.Any ideas?ReplyDelete
Thanks for your post, it has put everything we all feel into words.
Sorry about my lack of visits.
Spike's, our dog, illness, quick death nov/dec and being so ill myself jan/feb to march meant no visits
Since then I have been spending more time sitting in my wheelchair I have also not been visiting.
Tonight I decided to visit as many blogs on my list as possible.
I just passed by to say hello.
I hope you are doing well.
I just added a Polish ccsvi site to my friends on Facebook and I immediately received a message from asking if I knew about the treatment. They offered to send me information. I told them I cannot travel and I had no money left. I have not heard from them since. I was surprised how fast they were trying to enlist me to come to Poland and be treated. I guess there is big money in thisReplyDelete
just chatted with a person from Nova Scotia who came to New York state to get the procedure, she said it cost her $15,000.ReplyDelete
Marc, I am so lucky to be able to call you a friend. It is an honor to know both you and Karen.ReplyDelete
What a wonderful post, and so very true. I want to share this post with numerous people in my life. You really put my experiences into words far more eloquent than I am capable of stringing together. Thank you.ReplyDelete