MS is many things. It's a disease, a puzzle, an enemy, an industry. But for those of us who suffer from it, and for those who love and care about us, I think that most of all, MS is a thief. It's a cold hearted son of a bitch, insatiable in its appetite for banditry, unquenchable in its thirst to pilfer. It is indiscriminate in its pickings, taking the physical as well as the emotional, amassing a hoard of plunder from the illusion that its victims once called everyday life.
Some of what is stolen is easy to spot, especially in those afflicted with more progressed disease. Many physical deficits are glaringly apparent; a wheelchair substituting for swindled legs, a stiff and atrophied arm the sad stand-in for the lost ability to write, or shake hands, or tie a shoe lace. Cognitive losses might be harder to spot, but their impact can be just as grievous as physical disability. MS gluttonously grabs vocabulary and memory, the ability to string together thoughts and to properly express them. The crushing fatigue almost universally experienced by MS patients can cripple the will to fight back. Waking up more tired than when you went to bed is no way to ready for the daily battle.
MS steals pleasures, both simple and complex. One of the things I miss most is driving, not for the utility and independence that driving an automobile brings, but for the sheer pleasure of it. Until I was in my 40s, I never owned a car with a backseat. Two-seat roadsters were a passion, and I still crave cruising down the open road, feeling the wind twisting through my hair, the sun warm on my face, the texture of the road through the steering wheel, and the power of the engine through the trembling stick shift. I long for the subtle satisfaction of downshifting into a turn, the mechanical harmony of the sudden jump in RPMs coinciding with the well-timed loss of MPH. Now, the stick shift has been replaced by the joystick of my wheelchair, courtesy of my felonious disease. Multiple Sclerosis commits the crime, but I must do the time.
MS is not satisfied to simply target the unlucky souls who suffer from it. Those around them are caught in the disease's wicked gravity, easy prey for the master thief. Sons and daughters lose fathers and mothers, or at least the fathers and mothers that they once knew and depended on. Husbands and wives find the foundations of their relationships twisted and bent, the title "caregiver" suddenly thrust into the intricate emotional balance required of any successful romantic relationship. Some unions survive the trauma; sadly, many do not.
Friendships, too, are tested. As the patient learns to deal with a new reality and a revised set of priorities, some friendships simply wither on the vine, while others can become more intimate. I've learned how invaluable old friends truly are, who can see past the larceny of the disease to the human being that still lies within, who now needs them more than ever to reaffirm the life that once was, to confirm the memories that can sometimes seem like fairy tales.
The one thing that Multiple Sclerosis can never steal is the essence of a person, their humanity and individual dignity. The crisis of disease can be the forge upon which courage and heart can be hammered into a sharp edged sword or gleaming shield. I've seen the crucible of chronic illness reveal qualities within patients that they never knew they possessed, bravery and perseverance and steadfastness, adaptability and inventiveness and dauntless spirit, qualities unveiled all the more with each blow the disease delivers. It's not the ability to strut, or dance, or drive fast cars that defines a person; rather, the trappings of a healthy life can camouflage a person's true character, even to themselves. Stripped of life's adornments, we are forced to look within, and see perhaps for the first time who we are and who we want to be. Multiple Sclerosis can plunder much that is held dear, but the heart and soul of a person it can never touch.
Last week I had the terrific opportunity to have lunch with an impressive and empathetic woman named Beth Clark, who works for The National Multiple Sclerosis Society at their national headquarters in Denver, Colorado. The NMSS can often seem to be a faceless monolith, and is an easy target at which to vent frustrations for the many patients thoroughly fed up with the MS status quo. The Society's slow response to CCSVI fanned the flames of patient ire, but, responding to patient activism, the NMSS has recently thrown their considerable weight behind the efforts to get CCSVI properly investigated, sponsoring a live webcast featuring many important CCSVI players (click here for forum replay and transcript), actively soliciting grant proposals for CCSVI related research, and prominently featuring CCSVI in the latest issue of their quarterly magazine, Momentum.
Beth Clark is the antithesis of the faceless bureaucrat, and was instrumental in putting together the recent CCSVI webcast. She is herself the daughter of an MS patient who suffers from a very aggressive form of the disease, and whose experience with the disease defines every MS patient’s worst fears. Beth has, time and again, witnessed and been victimized by the heartless thievery of Multiple Sclerosis.
The disease upended Beth's life in childhood, her mother stricken with it when Beth was only 10. By the time Beth was 17, MS had forced her mom into a nursing home. Beth has devoted her life to helping find a cure for MS, and produced the following video about her mom and her family's struggle with MS. It speaks eloquently and with touching directness of the ravages that Multiple Sclerosis brings to not only the patient stricken with it, but all of those around them. Please watch.
Well, Marc, you had me weeping by the end of your so well-written post. And then the clip .... You have spoken of our quiet courage, forged in this unexpected life. I wish for you the wind in your hair again, the roar of the engine, the caress of the road's rumble.ReplyDelete
I watch the video, it's the future me, I don't want it to be me. I have started to learn to acept help from others but it takes work, every day. I have always been the helper not the helpee. I was always the physically able one, not any more. I hate the control I'm losing but I'm also learning lessons. Lessons in humility, pride (yes there is a sliver left), but mainly I've learned that I'm still me. Others can grow by being allowed to help me, and I can certainly show more appreciation. I have to work each day as I try to wake from the fog that it isn't about me. My family and those I love are battling this as well. I've learned that I need to Seize the Day and appreciate what I have today, tomorrow may bring additional challenges. I have to agree that MS is a thief, and I'd also like to say that it SUCKS as well.ReplyDelete
Marc, I've been reading your blog for sometime now. This well written post is exactly why I'm drawn to your blog. You don't candy coat, you speak reality. My biggest fear is wondering just how much MS will steal from my family. Thank you for doing what you do.ReplyDelete
I just can't accept that is my future. I can't bear to think that is my children's future--visiting me in a home. After five years and a progressing illness, I still am having trouble accepting the fact that I have multiple sclerosis. I hate this disease.ReplyDelete
I think I'm going to take a break from your blog for awhile. This possible reality is something I can't face right now. Keep up your beautiful writing, though. I'll be back.
As I've stated before, your writing just keeps getting better and better. Well done! Thanks for all that you do.
This is so beautifully written. You've put into words things I've not been able to express but recognize and feel.
BTW, if I had known you would be in Denver, I would have asked you to say hi to Rich Sarko for me. They were so very smart to add Beth to their team. Things have been moving in a wonderful direction. (now maybe I should just email Rich and Beth my thoughts, ya think?)
I am not sure which is the more depressing view Marc, the one looking back or the one looking forward. The past is often embellished with what you thought you were and the future is to scary to even consider. Until I recently heard myself on tape and caught a reflection of my spastic gait did I realize how much has been stolen from me. For me the thief is more of a pick pocket. It steals little things like, appoints, names of people I have just meet, and promises I have made to my love ones. If I just tried harder, remain focus, maybe I could be who I use to be. I will never be who I use to be. I will however, never give in to the criminal side of MS.ReplyDelete
Hey Marc - Just came back from a counselor who told me I was too articulate to have much cognitive impairment. She doesn't know....you write wonderfully, are articulate and creative, but I know your feelings of losing bits and pieces of what you once had...it's so hard to endlessly explain that YOU feel the sand shifting beneath your feet, that YOU KNOW that you are not the same.ReplyDelete
Hate the thief. She also asked me how I replenished myself - I told her I liked to go for walks in nature, another thing gone now...
The one thing that Multiple Sclerosis can never steal is the essence of a person, their humanity and individual dignity. The crisis of disease can be the forge upon which courage and heart can be hammered into a sharp edged sword or gleaming shield. I've seen the crucible of chronic illness reveal qualities within patients that they never knew they possessed, bravery and perseverance and steadfastness, adaptability and inventiveness and dauntless spirit, qualities unveiled all the more with each blow the disease delivers....YOU ARE THE ESSENCE OF THIS STATEMENT!ReplyDelete
Such true words. Too much reality for some. All the more reason to find the cure. I work and you would never know I have MS. And still That thief grabbed my thigh the other day and nearly took me down. I thought, is this the day? You defined that feeling perfectly and a spectrum of possibilities and all the thoughts that go rushing in behind it.ReplyDelete
Marc, You write words that I do not want to be true. You express thoughts that are beyond pain. You are the muse of spirit and love for all of us. Thank you for all you give, for it is much.ReplyDelete
I am her, never in my worst dreams could I see this. My blessing is my wife keeps me home. 2 months in a home I bartered every moment to die. I miss being the best at what I did, wrecker operator, but on the scene of tragic fatal accidents I took charge and performed efficiently with flawless precision. I miss my bikes on the lonliest road in America, Glacier Park and passing Sacajawea in the wind. The Nez Perce forest, Big Hole, I pray for Chief Joseph's strength and wisdom to sustain me the rest of my days.ReplyDelete
Blessings to Beth's Mom, Big Bubba, and all those severely affected or heading that way (and your families).ReplyDelete
I don't have anything profound to say but I just wanted to acknowledge the video.
Marc, you certainly don't sugar coat the facts/reality of this disease! While it sometimes painful to hear or watch, I appreciate your honesty.ReplyDelete
I loved this post. To be honest, I've tried to learn as much as I can about MS - and it hasn't been easy. But you offered a lot with this - so thank you. Just wanted to let you know I featured it in a blog post on WEGO Health so others in our community will be able to check it out and learn more. You can see it here: http://community.wegohealth.com/profiles/blogs/multiple-sclerosis-is-aReplyDelete
Thanks for all you do!
Marc, you may not be the most suave, graceful, and eloquent person in a room of many people, but your words are all that and more to those of us touched by an unpredictable illness that seeks to rob us of our lives. I look forward to reading your blog weekly for the insight and compassion that you are able to express in words that I long to grasp and share with those I know. Keep writing and sharing your Kamikaze spirit with those of us in cyberspace.ReplyDelete
i hate this &*()^%$ disease.ReplyDelete
Wow, this post really seems to have reached into some dark places. Please keep in mind that Beth's mom is a case of very aggressive disease, and that she was initially diagnosed when there were no MS treatments available. I'm sorry if this was very disturbing to some folks, but, let's face it, MS is no bed of roses...ReplyDelete
Judi-I hope the tears you shed were cathartic. I feel that sometimes we must face our worst fears, if only to know just what we're up against. Thanks for the wishes of wind and roar, one never knows what the future has in store...
Jim-MS certainly does suck. There's no way around it. But it sounds like you're learning some valuable lessons, and perhaps, even as MS diminishes you physically, it's awakened qualities within that can expand your humanity. Still, MS sucks...
Ed-thanks for the kind words. I insist on facing reality as it is, no sense fooling yourself or anybody else about MS or anything else in life. The hardest kind of honesty to practice is self honesty, and one thing I'll never do in this blog is to try to polish the turd that is MS.
Anonymous-It's good that you hate the disease. Anger is an energy, use it to fight the fight. Come back whenever you feel comfortable, I'll keep churning this stuff out as long as I'm able. And it won't always be this heavy...
Charlie-thanks for your continued encouragement. It's very much appreciated...
Lisa-thanks for your compliments, and also for all that you do for the MS community. I actually didn't meet Beth in Denver, she was visiting here in New York...
David-seems like MS is a different kind of thief for every patient. Some suffer sudden, catastrophic losses, others a slow siphoning of ability. Either way, the disease is never satisfied. The views both back and forward are rife with danger, that's why it's important to try to stay rooted in the now. Keep up the fight, with everything you've got...
Dabble-seems that even the professionals don't really understand what it's like to be in the grip of this vampire. So sorry that the thief has stolen your nature walks. I hope you're still able to enjoy the simple pleasures of a singing bird or a breeze stirring the leaves of a tree. Maybe closer to home?
Anonymous-thanks, but believe it or not, even I have good days and bad. It's important to allow yourself the bad days, but never let them dominate...
Travelogue-uncertainty, yet another of the many gifts bestowed upon us by MS. Moment by moment, my friend, it's the only way...
Hilda-you're very welcome, and because of people like you, I get as much as I give. Probably more...
Big Bubba-I'm so sorry that you find yourself in such a dire predicament. You sound like a man of many passions and deep understandings. Those are qualities that MS can never take away, and I think your comment speaks to the strength and wisdom that you already possess...
Weeble-thanks for adding your words of support to those in our "exclusive club". Where exactly do I renounce my membership?
Anonymous-I'm glad you appreciate my honesty, I know that it might be difficult to take for some. I insist on staring this thing in the eyes, I'm going to experience every moment of this life, good or bad...
Amanda-thanks for featuring this post on WEGO. I checked out the site, and it's very impressive. Your attention is much appreciated.
Anonymous-thank you for your gracious words. Hoping I can continue to live up to expectations, and that in some small way my words may help others fight the fight...
Anonymous-right there with you, brother (or sister)...
Marc, I believe you take your membership card past the Tough S**t Desk and go directly to the We Don't Give a Hoot Booth. The Booth will be closed. You can stand there and wait for it to open or you can go out and shoot another Kamikaze video. No pressure ;)ReplyDelete
My heart breaks for Beth and her mom and everyone else who this disease has had it's way with. You, Beth, and her mom are testament to the nastiness of the disease and the resilience of the person. Still, I have a hard time with the NMSS and it's resistance to funding research into some of the less toxic ways of coping with MS. Nothing works for everyone - from the most toxic to the least. I just think the NMSS needs to make a major paradigm shift.ReplyDelete
Our doctors won't work with less toxic treatments and drugs until the research is done. The NMSS won't fund the research. We are caught in the middle.
Thanks for your wonderful blog. I look forward to each post.