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 b!$%h, 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 Now, the stick shift has been replaced by the joystick of my wheelchair, courtesy of my felonious disease.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.
I have the hardest time with my MS during the following season: