Accepting the changes that come with secondary-progressive MS is necessary to live well in this new place.
The year was 2012 when I transitioned from relapsing-remitting multiple sclerosis (RRMS) to secondary-progressive multiple sclerosis (SPMS).
At the time, however, I didn’t really know that I had entered a new phase of multiple sclerosis (MS). In retrospect, yes, things were changing and had changed. But my MS moves like a slow train, and so the situation seemed manageable, though really it was not. I needed to realize that this new place was an entirely different environment from what I was used to. Sure, disability existed, and me within it, but now the disability and I were almost one and the same.
Denial Is Not Always a Bad Thing
The way I see it, RRMS technically lasted from my diagnosis in 1986 until 2012. So the 26 formative years in between consisted of living life with the hope that things might never get bad. But they did: I followed the textbook on MS, meeting the milestones the experts said I would.
Denial, as most of us know, is not always a negative thing, since I did live successfully during that time, trying to forget the entity within me. I just remember noticing odd symptoms and using a single cane to identify myself as a person with a disability.
But that was then, and it was as though I was playing a part in a movie. I don’t recall feeling too much fear; it was just that I felt “different” and not quite myself. I talk about this in my memoir, because all I could do was write down my innermost feelings.
Now, the next step is here, and I couldn’t really prepare for it.
At Last: A Focus on People With Secondary-Progressive MS
Yesterday I realized why my neurologist likes seeing me twice a year. I’m sure he cares about how I’m managing, but since he is a clinician, one of his main aims is to watch for drastic changes in my symptoms or functioning, such as changes in my walking ability or use of adaptive equipment. Seeing my neurologist is almost a formality more than anything. He exists to cater to my changing needs since he cannot make bad symptoms go away.
Personal Takes
By Mona Sen
