I took a walk in the snow today. Not a delicate, lazy snow of crystal masterpieces and satisfying fluffy heaps that pack into perfect snowballs and dress the trees in formal white tie tuxedos for a romantic gala, but a fine, blowing white-out of razor-sharp, vindictive snow that burned my ruddy cheeks and forced me to hunch into the wind.
Winter has finally come to Wisconsin after a bizarre autumn suspension of time through the Advent season. I am not complaining – I savoured every minute of sweatshirt weather, sunny mild days, and comfortable strolls to work. It was almost like a Portland winter, minus the rain and mist.
But this blinding, slicing snow suits me better. Mirrors what I have struggled with for almost a month now and thus feels more natural, more suitable for my daily struggles with fibromyalgia. I am walking through a metaphor sprung to vivid real-life.
For the past month I have struggled with a fibrofog. To explain the realities and terrors of this phenomenon to a non-fibromite is daunting. I look fine. Healthy, spry, fresh off my hiking adventures in Iceland and already looking ahead to volcano hikes in Sicily. Energized and optimistic. In the prime of my life.
If that’s what you see, then I have done a tremendous acting job. I cloak my frustrations and terrifying memory lapses in a mask of optimism and confidence. But this masquerade is exhausting and I hit the pillow every evening drained of energy.
You see, while you see me as “just fine”, I am fighting to move through the day, literally fighting my brain to stay awake and alert. It doesn’t always cooperate, a sullen, pouting teenager dragging its feet. On my good days, I can pull my brain along by sheer will, writing down everything on notepads to avoid forgetting important information, names, and dates. But this is not a failsafe strategy. I have slip-ups. My mask threatens to fall and shatter.
Yesterday I found myself struggling to form sentences. I knew what I wanted to say, what emotions I wanted to express, it was all in my head. But speaking the words, inflecting my voice with the right tone, was like pulling out a tooth or walking through mud. I fear I came across emotionless, idiotic, or distant. Times like this I prefer to be a recluse, but I push myself forward and pretend to be confident.
My short-term memory lapses frighten me. I write everything down obsessively, yet important pieces of information still elude me. I once sent my nephew two birthday cards, a week apart. I had literally forgotten I sent the first one. Have I ever forgotten to send one of my 15 nieces and nephews a birthday card entirely? Probably. That realization bothers me.
It’s a new year, but not much has changed. I fight this beast the doctors call fibromyalgia. I find myself drawn to stories with heroic people standing up against the odds, fighting to keep their pride and dignity. My latest discovery is the Korean TV show Hong Gil Dong, a Korean Robin Hood figure who stood and fought for the people against the corruption of the nobility. When I am sinking into the deepest depths of mental fog, I curl up in front of an episode and let the story buttress me up to face one more day.
A new year, another January and another birthday. My resolution? It’s not grand or heroic, but it means the world to me. To be gentle with myself, kind and forgiving. To keep moving forward, despite the haunting of fibromyalgia, one step, one day at a time.