Yesterday I went to see my neuro-immunologist. I was really thrilled to be able to show him what has happened to me since I started my new treatment. He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.
What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.
I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.
I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune. But there are equal parts fear and doubt. I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted. And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far? It is a ridiculous thought, but there nonetheless. I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest. Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.
And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not? I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.
I am in this place of plenty, but I have forgotten the language of ease.
I can’t make it through a grocery shop without gushing to the checkout attendant.
“How are you?” she asks, because it is part of the script.
“Oh, I am GREAT! So good, like, really really wonderful!” I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks. I yelp, “My pleasure!” because it really is. Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort. Maybe it seems over-the-top. But it is not.
This life, this ease of moving, this chance to do things and be part of things.
If only you could feel how I feel.
I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue.
“It’s early days” he said. And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat. I swung my legs into the footwell and grinned at him. We drove home, my hand on his leg.
My heart in my mouth.
Please, please let this continue. I promise I won’t waste it. Not one second.