a monthly feature by
Robin Anna Smith
by Robin Anna Smith
I’ve been having an extraordinarily difficult time lately managing my health and my daughter’s health. She and I both have a form of autonomic dysfunction (they call it “rare” but it’s really just rarely diagnosed) that makes being upright extremely difficult. It causes blood pressure and pulse instability, adrenaline surges, anxiety, sweats, dizziness, fainting, weakness, inability to digest food, blurred vision, and more. Luckily, there’s not usually any risk of death from the autonomic issues, unless it’s from passing out and sustaining a fatal injury. It seems my body’s been working on that, but so far, it’s been unsuccessful.
We’ve both been especially symptomatic all winter, so I sought out a new doctor to see if he might have a different perspective that would be helpful. Our new cardiologist is a couple states away, so I’ve been driving my daughter down for testing by myself, which may seem stupid given my symptoms, but we do what we have to do.
I got a room at the Hilton because it was only an extra $30, their beds are usually soft enough for me to sleep on, and there would be someone by the door who could help me (on crutches) and my daughter (in a wheelchair) with our bags, as between their taxi stand attendant and their shuttle driver, they have an employee parked at the entrance at all times.
The curious thing about being visibly disabled is how obvious I am, stumbling around on my crutches, tripping over things, dropping stuff—yet no one ever seems to notice me. Not one single person at the hotel noticed (conveniently) that I was hobbling in, also kicking my daughter’s chair forward (because she’s too weak to propel herself) with one foot, and then alternating with the other to kick forward our suitcase, which had multiple attached bags. I did this all the way from the sidewalk, past the taxi guy and the shuttle guy, to the front desk.
When I finally got to the desk, the clerk suggested I needed to go back to my car to pull around to yet another entrance and repeat this whole mess to get to my room. I just said, “That isn’t happening.” Looking back, I wish I had simply left. The clerk was kind enough to move our suitcase to the room for us. It was more walking than I normally do in days—that’s how far the accessible spaces were from the entrance, and how far the “closest” accessible room was from the lobby. I felt on the verge of collapse, but made it to the room and spent the rest of the day in bed.
The next couple days of going to the doctor’s office were still difficult getting to the car, but at least it was better because I wasn’t dealing with a bunch of bags. The only really issue while in the room was that we were unable to control the thermostat and had severe sweats the whole time, which caused more dizziness. But there was physically no way we could move rooms.
When it was time to leave, I decided to carry my crutches so I could better help my daughter and pull the bags down to the front of the hotel. Again, stupid, but I needed to get it done. As we made our way to the lobby, we passed the taxi guy and the shuttle guy, who were chatting each other up. We also passed the front desk, where there were numerous people. We were both obviously struggling. Yet, despite them making eye contact with us, they all just looked away.
In that little area between the two sets of sliding doors at the lobby exit, I dropped and fell flat on my back. I had to have fainted, because I had no recollection of the fall. My daughter just stood there, not knowing what to do, while I was unconscious. No one noticed.
swimming on land
the contents of my stomach
thermostat up. blood volume down. my head—a gyroscope.
adrenaline surge. heart rate soars. muscles begin to shake.
drop of sweat becomes salty bath—clothes soaked through.
mast cells activate. burst & release.
blood vessels permeated. sanguine fluid pools in my feet.
gasp for breath. hyperventilate. hold my breath & swallow.
hands out—grasping at air. catching hold of nothing. but the floor…
with a lump on my head
swirl print carpet
Robin Anna Smith (she/her/Mx) is an award-winning, Pushcart-nominated writer and visual artist, whose work focuses on disability, gender, trauma, and loss. Her work is published internationally, in a number of online and print journals, and she has forthcoming work in Kissing Dynamite Poetryand Modern Haiku. Her work is featured in the following anthologies: Unsealing Our Secrets, You Are Not Your Rape, We Will Not Be Silenced, and Love is Love: An Anthology for LGBTQIA Teens. Robin is the founding and chief editor for Human/Kind Journal.