I get it. My chosen handle – Blessed with MS – is blasphemy. I cannot even call myself religious without fear of getting struck by lightning for lying. This blog aims to frame my life’s biggest challenge — living with MS — by the experiences that I simply could never have had if I were not diagnosed in 2003. Many of these experiences have struck me with gratitude (as well as fear, anger, disbelief, and really uncharacteristic attention, patience, and understanding).
Howeeeever, I want a cure for this “blessing” with all-consuming impatience, and I eagerly follow scientific research that could lead to a cure. I’d much prefer my old life, when everything in my body just worked. Further, I am not naive about MS’ worst-case scenario; I cannot find adequate words to describe how I feel when I think of those whose lives have been destroyed by MS or the possibility of my own life being cut short in any significant way by MS.
Yet, for me, MS has been the best teacher, albeit an unsympathetic one. For example, I have learned that I have power in my health. In The China Study, Cornell University professor emeritus T. Colin Campbell writes that “genetic predisposition may make a difference as to who gets MS, but even at best, genes can only account for about one-fourth of the total disease risk.”
That’s huge (huuuge) because MS is the “diagnose and adios” disease; take your drugs and hope that your life is something short of a nightmare.
One can see two distinct sides of this statistic. It could blame the victim or empower us all. For me, it does the latter. Further MS research by Dr. George Jelinek, founder of Overcoming MS (OMS), preceded by Roy Swank’s three decades of MS research, shows that recovering from MS is possible. Jelinek also cites neuroscientist Norman Doidge, noting that the nervous system has an amazing capacity to regenerate, so that impulses can “detour” around damaged lesions, and he provides the science and anecdotes to back up that statement.
MS has also taught me about the sticky web of politics and profit in the search for a cure. For example, in the movie, Living Proof, Matt Embry cites a report dated July 23, 1993 from an FDA expert panel that said, “There is no empirical basis to conclude that Betaseron has an effect on the course of MS…clinical trials should be regarded with suspicion.” And yet Biogen Idec, one of several MS drug manufacturers, estimates $3.78 billion for its 2018 sales of its MS drugs. As Matt Embry says, he is not anti-pharmaceuticals; if any of these drugs can demonstrate long-term positive outcomes for MS patients, he would take that drug.
For me and as OMS advises, I discussed options with my neurologist. I took Copaxone and Rebif for nine years because I welcome even the smallest possible ameliorating and cumulative effects of these drugs and all other wellness practices. Unfortunately for me, however, the side effects of Copaxone and Rebif were challenging enough that I had to stop taking them. The risks of the new oral MS drugs are simply too scary for me. My personal experience has shown that there is no single silver bullet, a few prominent common themes, and a few frustrating contradictions and obstacles in the science of MS.
This blog is simply my particular story about navigating this incurable, mind-bending, crazy riddle of a disease. So, welcome and thank you for reading, and for suspending your judgment until you have read a bit more. The following poem nicely sums up MS for me after 15 years.
The Guest House
This being human is a guest house. Every morning a new arrival.
A joy, a depression, a meanness,
Some momentary awareness comes as an unexpected visitor.
Welcome and entertain them all! Even if they are a crowd of sorrows, who violently sweep your house empty of its furniture. Still, treat each guest honorably.
He may be clearing you out for some new delight.
The dark thought, the shame, the malice. Meet them at the door laughing
And invite them in.
Be grateful for whatever comes. Because each has been sent as a guide from beyond.
— Jellaludin Rumi, 13th century