A letter to the newly diagnosed, 9/8/2017
Someone famous has again been quoted as saying “I have MS, MS doesn’t have me.” They lie. MS had me 20 years before my 1993 diagnosis. It ruined hot summer days at the beach in my teens and exhausted me on choir tours in high school and college. It made me fail in outdoor summer jobs, demoralized me when I engaged in sports, loosened my grip on drum sticks during concerts, and turned mild colds into debilitating weeks of painful suffering. No one understood, least of all me. At times it made me unreasonably grouchy in public places, leaving me humiliated by ill-considered statements I made in groups of people I respected. MS has “had” me all of my life and when people say it doesn’t “have” them I lose respect, for they have not grasped the full level of the challenge of MS, and are, therefore, unqualified to speak about this disease.
I am aware of how fortunate I am, even after this litany of complaints. My diagnosis came at a manageable time — had it come earlier, I might not have attempted a rigorous training program in Clinical Psychology. I might have avoided long hikes and camping vacations. Had it come later, the misunderstood difficulties may have grown to interfere with my professional activities before I learned strategies to compensate. My point is not to complain about the miseries of the illness, but to complain about the false bravado and denial inherent in the chest thumping nature of the “MS doesn’t have me” approach to coping.
That way of coping is fraught with awful consequences down the line. Whatever success I had in managing this illness came from accepting that it formed a formidable barrier that I had to keep in mind at all times. Successes before my diagnosis came hand in hand with social and personal costs, things I falsely attributed to the failings of others or of my own character. After my diagnosis, whatever successes I had came because I learned how to reduce my expectations, and accommodate the strictures of the illness. In this way, MS is not a disease to “beat” on an individual basis (fighting to find a cause and a cure is another thing altogether) but a disease to sneak around, to outwit. It requires me to be a trickster with a dragon, lulling it to sleep so I can steal jewels and bits of gold from under it’s nose. Forgetting that it exists and blasting forward meets with doom. It can’t be defeated. You’ll get burned if you try.
Most of the newly diagnosed will have many years of life, often decades, in which to enjoy satisfying professional activity, enjoyable family life, countless moments where you make memories that will sustain them in their later years. But these things will happen in the company of a monster unique to each individual, one that must be coddled, anticipated, and accommodated.
If you are fortunate, like me, you will have willing and loving companions in this adventure. It is a journey we must take, for its advent and ultimate end, like life for every human on the planet, are not in our control. But we still will have moments of great joy, satisfaction and pleasure. Hang on. This ride is going to be a little rough.