Call for Help
Content warning: disability, ableism, illness, vomiting, anxiety, medical discrimination
I would rather die than press the Call button. I wave it away when the nurse drapes it over the corner of my hospital bed. I apologise as if I had taken a shit in their shoe when someone responds to my rare requests for help. I have laughed and joked through the most painful moments of my life, worse by far than childbirth, rather than inconvenience doctors or staff.
I have a bizarre combination of internalised ableism and impostor syndrome about my invisible illnesses of chronic pain and autism. You can only be told your pain is all in your mind and your mind must be fine if you act so normally before either the body or the brain decides you must be imagining it all. Add to that the doctrine of self-abnegation and independence instilled in me as a child, and asking for help becomes an abject failure. My needs are a disgusting imposition, and any accommodations should surely be reserved for someone more deserving.
I called an ambulance for the first time in my life a few months ago. I’d been vomiting nonstop for five hours, and every heave triggered nightmarish surges of nerve pain and muscle spasms. I’d taken the anti-nausea meds I had in hand, but nothing was working. I didn’t know how to make it stop, and the pain amplified every kind of sensory overload until I was panicking. I couldn’t wait to get pain relief I needed I order to keep throwing up without passing out.
But I gave my own full medical rundown to the paramedics so they wouldn’t have to look me up in the system and read the novel-length summary. I cracked jokes about the flaws of a pain scale. I complimented the EMT on his skilful IV stick in the back of a moving bus.
How dare I be less than polite and charming when they were there because I had failed to be tougher?
The ER docs couldn’t get ahead of the vomiting, so the pain outpaced the pain meds. I didn’t know why this was happening, and I couldn’t see how it could stop. I felt my anxiety rising fast, and I told them so. “We have to get your vomiting under control so you can take your prescribed oral anxiety meds,” they said. “I’m sorry but I don’t think I have that kind of time,” I replied with a regretful grimace. “Let’s just keep trying,” they said. “If I have a panic attack, I’m going to go into meltdown. I told you before, I’m autistic. I don’t want to have a meltdown. They’re awful,” I pleaded. “Just hang on,” they said.
Lunch breaks started, so when I finally pressed the Call button for the first time, the only person who could respond was a Patient Comfort worker. She was so sweet and useless, without the permission to even turn off the buzzing fluorescent lights above my bed. She saw me shaking and piled blankets on me as I curled into a clenched, rocking ball, beyond tears or speaking. It took me twenty minutes to type this on my phone:
She asked if she could use my phone to call my husband, who I’d sent home to get some rest and look after our kids. When he arrived, I dissolved into an animal keening as he tried to work some circulation into my numb limbs and demanded why no one had done something for my pain and distress. He said he’d never seen me that bad.
The doctors and nurses seemed bemused. Why hadn’t I rung for help? If I could say “please” and “thank you,” why hadn’t I used my words to say I was in distress? If I was having a meltdown, why didn’t I scream or throw a chair like autistic boys in movies do? How could they have possibly known how bad it really was?
Why couldn’t I call for help? The button was right there.
It was like a Break Glass In Case Of Fire alarm, but the hammer was gone. I’m not sure if I’d ever had one. Had it been offered by the doctors who diagnosed me after years of ignoring my symptoms and my testimony? Had I put it in the box where my sexuality and my mental illness and my trauma were stored politely out of sight? Had I refused it because I should be strong enough to smash the glass with my own bloodied fist? Had I set it down when I realised the glass was bulletproof or too costly to replace? Had I given it away, over and over, to someone I thought needed it more? Or had I hurled the hammer into the sea with the rage of being invisible, a failure, someone who couldn’t even be disabled the right way, the way that announced its presence and demanded accommodation?
When I got sick again yesterday, I politely gave the woman at ER intake my name and date of birth. I held my arm still for her to strap on the ID bracelets. But I moaned as I was wheeled in, letting the sound echo in the plastic puke bucket they gave me, an announcement of my need. I rated my pain at a 8, then called the nurse back to tell him I had spoken incorrectly, that it was a 10 and the first round of pain meds wasn’t enough. When I was asked to lift my legs and a breathless spike of nerve pain roared up my back, I let the tears come and refused to do it again. I pushed the Call button when I needed to and tried not to apologise for my misery. As the charge nurse did rounds at the shift change, I heard him say, “Patient came in distressed. Quite distressed. We treated her pain and got the nausea down. Doing better now.”
Because they had treated my pain — all of my pain — I was doing better. I knew where the Call button was. I had Called for myself, as unwell and uneasy and uncertain and unworthy as I felt. And I was able to thank them for taking care of me, because I had taken care of myself.
