What do you mean, it’s February?

marktwain1

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.

fear

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12 thoughts on “What do you mean, it’s February?

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  1. Liz I’m impressed. Your attack on fear astounds me. I’m dictating this as I have difficulty writing with my hand. I too love taking pen in hand hand or sitting at the keyboard to bare my soul. The switch to dictation was difficult but necessary if I was going to continue to express myself. If you still have a vocal voice perhaps you will reconsider. You have much to say. ❤

    Liked by 1 person

    1. Liz, I think what I’m really saying, if I can do dictation, you can do it. With all your weaknesses, you have great strength! You give strength through your words. You are needed. You give great strength to those who read what you have to say. ❤

      Liked by 1 person

    2. I do still have a vocal voice, although I think some days my husband wonders how long it will be before that goes (I joke, of course), and we’ll see how it all comes out. I really, really appreciate your kind words and encouragement ❤

      Liked by 1 person

  2. Again, Liz I am at a loss for words. I too would be fearful if I lost my ability to use my hands, so understand where you are coming from. Right now, I am sorry to say, all I can do is lift you up in my prayers. If I was closer, there would be hugs and words of encouragement on just how well you are coping with all this. Being so far away and not being able to help is very difficult for me. Please know, the tears are flowing, love is flowing and my prayers are for you. ❤ ❤ ❤

    Liked by 2 people

    1. Oh, Irene, what you do is more than enough to support me. Never be sorry for that! I take a great deal of comfort from knowing so many folks are praying or sending good thoughts from afar ❤

      Liked by 1 person

  3. Another thoughtful, gut wrenching post by you. Oh how I remember my dx in 1994. And I totally understand your comment about voice recognition hardware. I have had Dragon Naturally Speaking for quite a few years. But every time I hook it up and start to talk a robot flies out of my mouth instead of the comical, thoughtful things I had planned to say. I now type with one finger and prop my left hand on the shift key. Frustrating when I have so much to say but I am not complaining TOO much! Love you Girl Friend!

    Liked by 1 person

    1. MJ, I didn’t realize you have voice problems, I’m sorry to hear that (read that), but I did laugh at the vision of a robot flying out of your mouth! The fact that you type with one finger? I can imagine how much time it takes, and that makes these lovely messages that you leave for me all that much more precious.
      Much love to you too ❤

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  4. HI Liz,

    Im very glad you got back on your literary horse…

    I have no “perfect words” to respond with, but I know you appreciate honesty over words written simply to provide a response to your post.

    Just know, I think of you often…

    I will pass on, in the hopes of encouraging you, that I have nursed many people who somehow find a way through the dark periods, the fears, the tears, only to discover it pushes them much farther than they ever believed possible, and surprised that they find hope.

    Love Christine

    >

    Liked by 1 person

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