I can’t believe the last time I posted was early January, but I can’t say I don’t know where the time went. For the first time since diagnoses, I have been paralyzed with fear. Not general fear, but a very specific fear.
The one thing I’ve been able to do for a very long time is write. Write for entertainment, for deadlines, for catharsis, for processing, for enjoyment, for a million other reasons. My writing process has always been that of using the keyboard (or actual paper and pen, back in Olden Times).
I like the words spilling onto the page from my fingers to the screen. I don’t like dictation, never was interested in voice software. Assessing each sentence as it comes out, reviewing it, deleting it, or using it as fuel for the next sentence, like kindling to a bonfire, that’s what I like.
In September, I noticed that I was losing strength in my arms. Not a lot, but certainly noticeable. And then over Christmas, I felt those dreaded fasciculations (muscle twitches) right down to my fingers, signifying that the nerve axons weren’t firing properly, that the muscles weren’t getting the signals they should be to work properly.
I had started getting them in my face too, leading to fears that I would lose my ability to smile, which was frightening as I have “resting bitch face”, in that I look perpetually contrary if I’m not smiling. But they stopped and nothing more happened (so far).
This is different though. If I can’t make my fingers and arms work, I can’t type, and my voice will be silenced, and if I have no voice, how can I live? I can’t process things, I can’t communicate, I can’t be me. Writing is who I am. So that’s the fear I’ve been wrestling with. I have barely been able to respond to emails, I’ve stayed off Facebook for days on end, very little texting, and certainly no long form writing.
I sat at my laptop, fingers lined up ASDFJKL;, and could not bring myself to type. If I didn’t then I wouldn’t realize I couldn’t, I could still pretend, after all. No amount of meditation or medication could ease the fear. Add to that a particularly emotionally difficult January, and I just could not write. It became so that even opening email was an effort.
Today marks one year since I walked into the nearby health clinic, concerned about weakness in my thighs and expecting to be told it was middle age. The GP who saw me ruled out MS, said it was likely a spinal stenosis, and he’d schedule a consult with a neurologist “just in case”, and so it began.
And thinking about all I’ve overcome since those days, not the least of which was the fear of death itself, I managed to find a thread of nerve to sit here and start typing. it’s been almost an hour, and my fingers are still moving as quickly as ever, even though the words are not coming easily. I’ve been thinking of friends who have their own struggles.
Apologize for the poor quality of this post, I’m just pushing it out there to get back on the literary horse, so to speak. I need to write while I can. For Claire, promised chapter drafts of my book to entertain her through chemotherapy. For Lesley, a beautiful spirit so full of life I can’t believe she left us. And for me, because I still have much to say before my voice is quieted.
Still fearful, yes. But more afraid of not writing while I still can.