One of my dear friends with Multiple Sclerosis recently sent me an email, which contained the following two paragraphs:
“Linda, I am really tired of the medical situation. I have started asking myself "what did I do to deserve this?" and "what could I have done differently not to have it?" Do you ever ask yourself those questions? So many questions with no answers and I know there won't be any answers in my lifetime.
This is a really a hard time for me and I am doubting just about everything and everyone these days. The world has gone to hell in a handbasket, the economy is in the toilet, and life sucks in general.”
You might think by reading those two paragraphs, my friend is suffering from some kind of major depression. I don’t believe this is the case. She’s just “telling it like it is” for her and eloquently stating these troubling questions we ALL ask at one point or another in our struggles with MS. IT’S NOT ABNORMAL TO HAVE THESE THOUGHTS OR TO ASK THESE HARD QUESTIONS. It IS unhealthy to ignore them, however.
I asked her permission to reprint this part of her email in my blog because I DO think it is important to not only talk about these hard things, but to also explore our own, individual answers to the questions. And yes, S, I HAVE asked myself those exact same questions at various times along my path with MS.
So, let me first address feeling “tired of the medical situation”. It is bad enough we Msers have to struggle not only with the disease itself, but also with the multilevel complexity of OTHER problems MS brings to our lives. MS has a way of worming itself into ever aspect of our living, from our jobs, to our relationships, our financial stability, and so on. MS creates a “medical situation” that none of us were given any kind of handbook on how to cope. It is tiring…it is EXHAUSTING to suddenly be forced into an arena of medications, tests, expenses, treatments, and not have someone be able to tell us, “This is going to cure you”, or “This is going to make things better”, or even, “This will have an end”. The medical aspect of Multiple Sclerosis can be consuming at times, especially when in relapse or progressive disability. It does make “life suck in general”.
“What did I do to deserve this?” Come on, kids…we’ve all THOUGHT that question in our minds even if we haven’t actually SAID it out loud. What DID I do to deserve this? My personal answer to this question currently is…nothing. I didn’t DO anything to deserve this anymore than my sister, who was killed in a car accident, DESERVED to die at age 33. I don’t think blaming her (sister) for driving my nephews to a doctor’s appointment and accidentally hitting a patch of ice was anything she could have predicted or prepared for. It wasn’t out of recklessness she slid into oncoming traffic. She hadn’t committed any kind of horrific crime to deserve to be punished by death. She didn’t DO anything, except be where she was and die.
I have MS. I don’t believe I DID anything to deserve this disease. I don’t believe God is paying me back for some transgression I might have committed. The “God” I know doesn’t get It’s jollies from petty paybacks. I don’t believe my MS is any kind of “test” either. It’s just a damned disease that I happen to have and I don’t think blaming my European ancestors or my parent’s genes is quite the answer either. MS is no different than the appendicitis I had, or the mononucleosis, or the viral meningitis I contracted. I just GOT that stuff because I lived where I did at the time I did with the people I lived with…STUFF HAPPENS. And I’m sure there may be some larger purpose to it all, but I’m not sure I’m really supposed to know what that purpose is right now. I do believe God keeps “secrets” sometimes…but probably because I’m not evolved enough to “hear” about them.
“What could I have done differently not to have it?” Hmmm…obviously nothing. Because I believe if there WERE things along the way I COULD have done differently not to have MS, I probably would have chosen to do them. Human beings are amoeba-smart that way. Even amoebas are smart enough to move if you poke them with a painful stimuli. They won’t necessarily move otherwise, except for food, but poke ‘em with a stick and they’ll try to get away.
Hindsight is 20/20…wasn’t it dear old Winston Churchill who said that? Smart man. Looking back on my life, I can “see” all kinds of things I have done that have taken me down the path I am now on…and I’m not sure if I could, I’d change much. I got poked with a stick a few times, I moved about, I remained stationary…I lived the life of a human amoeba. It’s what we know to do. It is what we’re wired to do. We make the best choices we can in the time and circumstances we are in and we call it, LIFE. I’m sure in ten years from now, I will look back on today and wonder why in the hell I did what I am doing now?!? My point is (and I DO have one) I COULDN’T HAVE DONE ANYTHING DIFFERENTLY THAN I DID AT THE TIME I DID IT. To assert otherwise makes me look like a pompous ass…it also makes me look really stupid, which I don’t believe I am! Because only a stupid person or someone with a death wish would CHOOSE to do anything that they know would CAUSE MS. And I didn’t CHOOSE this friggin’ disease!
I also realistically (some would argue pessimistically) believe “there won’t be any answers in my lifetime”. I don’t believe there will be a “cure” for MS either. Sorry to all you newbie readers out there…if you’re young enough, perhaps you’ll see scientific advances toward a cure in YOUR lifetime, but I doubt very much it will happen in mine. Now, if the disease only affected Republicans, there “might” be more money thrown into research and advancement. LOL But let’s face it…Msers are small fish in a very large medical and scientific pond AND MS is not a sure death sentence like cancer used to be. It’s also not an “In Your Face” disease because most of the Multiple Sclerosis symptoms are hidden…we just look too damn good! Nothing really rots and falls off with MS or causes gross disfigurement. MSERS JUST DON’T MAKE THE GENERAL PUBLIC THAT UNCOMFORTABLE! And besides, there’s only an estimated 400,000 of us living with MS in the United States—a 2 to 1 ratio of these are women—and we’re just not “popular” enough for the big bucks funding to find a cure…if only Ronald Reagan had MS instead of Alzheimer’s Dementia…but I digress.
“This is really a hard time for me.” I hear ya, sister, and my heart goes out to you just as I know yours has to me during my hard times. It just truly sucks…it really does. It feels so incredibly lonely at times when I try to share with my non-MS friends the roller coaster of feelings MS causes in me…bless their hearts. They listen, they are supportive, they care…but they will never be able to understand…just as I will never be able to understand childbirth, or migraines, or TMJ, or Grave’s Disease, or any other illnesses or events I have never experienced.
I AM always comforted by the fact my MS-afflicted friends DO understand, even if I wish with all my heart they didn’t. To have MS is to “know” MS intimately…and even though we are all different in how it affects us, we still “understand” each other in that special language only Multiple Sclerosis provides. We speak MS to each other. We listen MS with each other. We feel MS with one another. And because of this, we are never alone. I believe this is because in the language of Multiple Sclerosis, compassion understanding, and love are the important words conveyed to one another and nothing else matters.
Namaste to you all, dear friends…and peace to you,S…