Dear Carlow companions,
I’m so glad to join you for the January writing residency. I am writing because for the first time in my life, I am attending grad school in a disabled and dying body. Going on a writing retreat with a terminally ill person might be new for you too. So it’s bound to be awkward, but maybe I can share some things that will help us both get a feel for what it may be like.

I am not in control. On the ALS functional scale, I have lost 60% of my abilities. That’s a lot of body no longer functioning well! I’m like an old phone who might suddenly run out of battery life mid-workshop, please excuse me. My legs seem to miss running and will break out in a tremor at the weirdest times. Just welcome it.

I need full time care. A beloved friend, Laurie, is flying in from Montana to be my companion. She is cut from the same cloth as Rachel Watson and will fit right in. I’ll be leaning on her and if we need more support, we will definitely ask you.

I look and act disabled. Which means that even though I feel like a songbird inside, I am disabled. I even have the parking sticker. In my able-bodied life I found it trying to relate to disabled folks and you might too. If you feel the urge to pity me or be overly nice and helpful, please go get a coffee and drink it slowly until you feel ready to try seeing me in my wholeness.

You will see little of me. This disease is a jealous bastard and has me breathing with a BiPap for twelve hours each day. It requires me to stretch daily so my limbs don’t turn into kettle-fried crisp. And eat, omg, I eat with a tongue that moves like a geriatric snail. So on a good day I will join you for three hours. I will not be able to generate much writing during the residency.

I am mute. I communicate by writing on a board, which Laurie will read. I miss talking! And I hate being talked at. I invite you to share silence with me. If I write on my board and invite you with a gesture to read, please read aloud to bring my voice into the room, so I know I have written legibly and you have understood. When we talk together, please ask me questions I can answer clearly with a yes or a no. If you ask two questions at once, I cannot respond and be understood. For example: Don’t ask “Would you like coffee or tea?” Please ask, “Would you like coffee?” Then wait for a reply, and if I say no, ask if I would like tea.

The paralysis is affecting my limbs and core. It is like the dial of gravity keeps turning up and my limbs seem to be stuck to surfaces. I heard yesterday that I am approved for a portable electric wheelchair which I don’t know how to drive yet! I hope to get it before the residency. You can also bet that I will be the slowest mover. Please excuse me if I roll in late!

My lung capacity keeps lessening. Any respiratory disease (a common cold, a flu, a mysterious sniffle) can land me in the hospital and I will not recover to this level of functioning again. This is a source of stress for me. I want to be in community, be loved and held and not get ill. My neurologist made it clear that I must mask at all times and invite others close to me to do so, and to up their hand washing game. Please be on the side of my safety. If we share a writing space and you are able, please mask up. If you or someone in your household has a respiratory infection, please keep your distance from me. It’s hard for me to ask, because I am a hugger-bear, but please be conscious of transferring cooties – don’t touch me without consent.

Because of this I will not join you for dinner, which is a sadness (I love hanging out, I love good food) and a relief (because I am gross).

I am gross. After your speech muscles go, your swallow functions follow. So be glad we are not sharing a meal! And even if we don’t dine together, my gross warning persists: I am no longer able to manage my saliva well and I can choke by swallowing my saliva (and disrupt your reading). With lungs that can’t cough so well, there will also be excessive throat clearing. I’m not trying to get your attention, I just have phlegm in the wrong place.

My emotions are right there, ready to surface. Don’t be alarmed if I cry. Don’t be scared if my laughter sounds like a donkey in labor or if I vocalize frustration in a moan. Part of dying is being vividly alive also. I feel stripped of my filters. Please just be in the moment with me. There is nothing to fix.

Despite all of this and no makeup, I am still a beautiful badass and I am excited to be with and learn from you as we keep writing, shifting, breaking, righting and remaking ourselves and this world.

With so much love,
Hanna

P.S.
I’m attaching a drawing—Laurie wrote a children’s book for which I made the illustrations.