I’ve always felt that the second day of doing anything is the hardest. You begin your endeavor on day one with enthusiasm, great intentions, optimism. And after that first day, you have a much better idea of what is in store.
That’s how M.S. goes.
I started out full of optimism, all the things I was going to do – the things I was going to prove. The disease humbled me fairly quickly. J and I spent yesterday in the Neurological Unit at UPenn’s Perelman Center and no matter how hard I try, how far I believe I’ve come — sitting in multiple doctor’s rooms discussing all my symptoms, how I’m walking, what my numbness level is — it’s all exhausting. There are no secrets between my husband and I. Health issues have prevented that.
This gloomy Thursday morning, as the train makes its way laboriously into the city, my head is filled with thoughts, fears, details i forgot to mention. Multiple sclerosis is no joke. Maybe the average observer can’t see my struggles (and that in itself can be very frustrating) but they are there… every second of every day.
I lost feeling in my feet on December 23, 2012. I remember very clearly, because we were in Mansfield for Christmas, and I hoped (prayed) that it was just a circulation thing. Or maybe a pinched nerve. I very clearly remember wondering if I’d ever feel my feet again. It was terrifying at the time. Now, it’s just life. I don’t remember when it climbed up my legs and down my arms. It’s better than it used to be (Tysabri, food, exercise, etc). But my pinky fingers and ring fingers are always tingly.
The thing about M.S. is – you can’t quit it. So it just perpetually feels like day two, a vast unknown future full of questions. Fears. I have tried over time (after the anger and the denial and the sadness which inevitably comes) to find my way. To crack the code. And sometimes I feel like I have it under control, and other times I feel lost and alone. I wonder if I’ll ever not have a headache, if I’ll ever not feel exhausted. But it’s always back to putting one foot in front of another. In having faith that the choices I am making are good ones.
It’s always day two.