Three Years

Me, 2020, three years post diagnosis


Three years. It feels, sometimes, like a blink. Like when I open my eyes everything will be right again. But most of the time it feels like another life, an alternate universe, a different me. I admire her, I envy her. I miss her. She does the most unremarkable things with her body but they leave me in awe.

The voice I used to be embarrassed of when I heard myself in recordings sounds so beautiful to me now, strong and feminine and nuanced. I want to carry it around with me to play for people. So that they know I once sounded smart and capable. So that they don’t make assumptions about my intellect based on my slurred speech and disturbed voice.

The other me maneuvers around the kitchen in a home video, she picks up her child. She laughs at something someone says. Her body moves easily, like it’s nothing. She’s so strong and able, sexy and full of life. Perhaps not particularly special compared to those archetypes of western beauty, but from where I sit now she’s breathtaking. I’m proud of her. Proud that I used to be her. Mystified by the insecurities she has. How does she not see how beautiful she is?

She used to feel close, like a phantom limb but for my entire person. My body felt like hers. Like if I took a step my legs would know exactly what to do and I’d walk. Because haven’t I always walked? Haven’t I taken countless steps?

But these days she’s mostly distant. These days it feels like she’s already dead, and I’m here, in this strange limbo where my heart and mind live but my body’s a broken shell.

I miss her. I wish I could be her again. I wish so hard for her. But she’s gone.


Me, shortly before my ALS diagnosis.


3 thoughts on “Three Years

  1. We feel your grief as we feel our own for the loss of your able, beautiful, body. Sometimes people refer to the body as “just a shell,” with the real person being who you are inside. But we are embodied souls, flesh and blood, eyes and smiles and touch, so it is not so simple to make this artificial distinction. In your last post you mentioned being “seen.” We are lucky, maybe luckier than most, to be able to “see” you. We see you with a fishing net flung over your shoulder, stomping through the swamp, leading your two younger brothers on a hunt for frogs. We see your delicate fingers playing the recorder. We hear you speaking Czech, Russian, English, Spanish. We see you, head buried in a book, engrossed in another world. We see you skipping off to school, nursing your babies, chopping and slicing and making delicious food for your family. We hold the sights and sounds and feel of you in our hearts. We ache to take the pain away. But we love you forever. -Mom

    Liked by 1 person

  2. Three years… It’s so long and not. I’m with you – it was three years in October. I wake up in the morning and hold very still. And in that moment, I’m sure everything is just as it was. It isn’t until I first try to move that leg over the edge that my uncertainty is broken.
    There is good here too – that other woman? She was so sure of her own abilities, certain that never her… Never her would something like this happen. I wish I could have her healthy body and keep my knowledge and mind. I’m wiser now.

    ((Hugs)) You wrote this so true and so beatifully. I pray you know, deep within, you are so much more than what you can and can’t do. Your intrinsic self is beyond that broken body.

    Liked by 1 person

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