Living Every Decade of My MS Life
Have you been living with MS for decades? For many of us, even if the diagnosis is new the experience is not. The disease we’ve been treating for two, four, or ten years was there in our youth, tugging at us with annoying, often vague distractions. But we don’t really put that together until long after the fact. Sound familiar?
Opening the floodgates
For me, the arrow signs pointing back to the past were firmly in place during my first long interview with a neurologist, one month after my initial onset of symptoms. It’s not that I was conscious of it before the interview; I had no idea what we would talk about. The doc checked my cranial nerves, reflexes, strength, and coordination. Then he asked about my history of childhood illnesses, asking me to recall what I could, along with anything else that happened that seemed strange. That’s what opened the floodgates.
Clearly remembering odd inabilities
Not only did I have total recall about contracting pneumonia at age 12 and scarlet fever at age 21 and the occasional clumsiness and loss of balance that followed them, I could clearly remember an odd inability to keep my bike handlebars straight while riding across the blacktop at age 11 and later that year, a spastic turn of those same handlebars that sent me careening down a steep embankment to crash in a heap at the bottom, bending my handlebars and scratching my face in the brambles. A nice boy helped me back up the gulley, fixed my handlebars and told me I could have been seriously hurt. I was too embarrassed to thank him for his help.
The farther back, the more there was
Late in the summer, I was 21, I was over the scarlet fever that had laid me out that June. But annoying things kept happening. Five different people at five different times — people that didn’t know each other — asked me why I was limping. It was downright irritating and I could scarcely hide my annoyance. I’m not limping. I sit on that leg a lot and it gets numb, so I hobble around for a few seconds until the blood rushes back into it. Don’t be stupid.
I tossed it off as so much ridiculousness, yet I remembered every detail. This is how the interview went. Thanks to my orderly recall of the curious, inexplicable phenomena of my youth, a chronology fell into place the longer I spoke. The farther back I went, the more there was to remember. Migraines that commenced at age ten. It was this item that made the neurologist nod slightly, as though it had some meaning. What had previously felt annoying was now beginning to feel something like relief.
Confusion, pain, and moods
In childhood, I was encouraged to ignore my body and its strange sensations. Around age 8 or 9 my legs would become so painful that I’d scuttle around on hands and knees trailing my mother and complaining of leg pain while she swept the floors. Those are just growing pains, she would tell me, you’ll outgrow them. I believed her. The pain did subside for many years, only to return years later in the context of MS spasticity. There were other things, too. But my parents engaged in distraction when it came to my confusion, pain, and moods. As though there was an unspoken rule that what a child is feeling is purely their imagination. We are, in effect, too fanciful to be believed. Too young to be truly sick or to really suffer.
Living my MS life
Now in my sixth decade of life and who knows which decade of MS, I can now live each one in ever-deepening awareness of how the disease wove its tentacles around my motor skills and my self-confidence, distorting my opinion of my competence, and ultimately, my place in the world. Decade after decade, wading into the psychic murk is the best way for me to find my way out of it and discover what’s real about my value, my suffering, and my strength.
How well do people around you understand MS?