Jun 6, 2024 4 min read

Healing is not linear

Graphic with a coral red background. Digital portrait by Jen White-Johnson featuring a photo of Asian American woman with honey blonde hair. She is in a wheelchair and there is a tracheostomy at her neck connected to a ventilator. She is wearing a silky multicolored shirt and a bold red lip color. She is looking intently at the camera with the heat of a thousand suns. Behind her are red and purple flowers with a red circle in the background framing her face like a warm sun. The background of the portrait is purple.

Healing Is Not Linear

It’s hard to believe but exactly two years ago on June 6, 2022, I had a series of medical crises that led to several weeks in the hospital leaving me without the ability to speak or eat by mouth. Time is hazy. I feel like it was just yesterday that I got back from the hospital. My memory of what happened was filled with gaps and the last two years have been full of adjustments and unpleasant experiences navigating new medical needs of my radically altered body.

Healing is not linear. I had multiple issues such as my feeding tube needing to be changed every three to four months due to clogging even though I was told it could last a year. Because there are foreign objects in holes in my throat and stomach, the body naturally reacts. Plastic parts are unwelcome colonizers and the tube that goes in my tracheostomy produced a lot of irritation and secretions. The first year I had days where I had so many secretions that needed suctioning, I tucked a towel under my shirt to absorb all the dripping excess secretions from the hole in my neck.

Another challenge was securing a team of reliable caregivers to provide additional care that I require. I know how easily I could be institutionalized and it is a threat that lingers daily. My dear friend Yomi Young set up a GoFundMe to cover the out-of-pocket costs of care which was necessary but it gave me pause. It enrages me that people have to crowdfund to pay off their medical debt or the cost of healthcare, medication, medical equipment, and housing when it never had to be this way. Currently, it costs my family $840 per day every day for the care I need so that I can remain in the community. It is unsustainable to rely on donations from the public for such an exorbitant, ongoing, necessary expense so I can have a sliver of security but here we are. It feels uncomfortable to continually ask friends and acquaintances to continue to support me but I cannot ignore the fact that I need help.

As a new nonspeaking person, I learned to communicate again by using a text-to-speech app. I experienced so many new dimensions of ableism. It’s been fascinating yet infuriating. This past January my stomach tube clogged once again and cracked resulting in a short stay in the ICU as I awaited a doctor to come replace the tubes since “they don’t do that thing on the weekends.” The procedure, which I endured several times already, became one of the most horrific and traumatic times of my life that rivaled my hospitalization in 2022. And that’s saying a fucking lot. I was unable to communicate since they didn’t allow my caregiver who could read my lips or phone with the app in the room. I writhed in pain as healthcare providers ignored my facial expressions or chalked up my tears and tachycardia to “anxiety.” I was reduced to a powerless subhuman who didn’t matter in the eyes of the medical industrial complex. I continue to process the collective medical traumas from January, two years ago, and an entire lifetime of being disabled in a nondisabled world. It is exhausting to continually fight for one’s existence, surviving multiple times from dying, and trying to be seen as a whole human being.

The last two years were full of difficult medical complications. It has also been a time when I edited my latest anthology, Disability Intimacy, which came out a little over a month ago. This was a labor of love. I was dealing with so much uncertainty and it was a gift to be able to work on something that brought me so much joy. I continue to write and the creative process has been a lifeline allowing me to tell my story, work on new exciting projects, and engage with the disability community.

I turned fifty this year and it is not lost on me how rare it is for so many disabled people to reach this age. It’s been a wild year so far with very low lows and the highs of having another book out in the world. While I may look good on the outside, posting photos of myself on social media enjoying life, health problems continue to plague me. Right now I have two pressure sores on my butt that are severe. I am preparing to spend as much time in bed as possible which removes me from my laptop where I do the bulk of my writing. My sister helped me find the right clamp to hang an iPad on the side of my bed and a stylus so I can open apps, check my email and texts, and watch tv to distract me from the discomfort of these sores. I’m utterly afraid about the sores getting worse and a potential infection. I am also worried about my inability to write at length since it will be too difficult holding the stylus and drafting paragraphs by typing letter by letter. Once again, I will have to adapt because my body demands it. I want to do so much and feel like I am in a race against time.

Disabled life is precarious. Precarious not just by changes to the body, but the structural ableism that determines the conditions in which we live in. Not a day goes by that I don’t think of what happened to me two years ago. Memories of feeling suffocated when I struggled to breathe, insomnia and anxiety about dying if I closed my eyes, internal bleeding and a litany of other complications. These memories will haunt forever, a marker of The Before Times and The After Times in the latest iteration of my crip cyborg bodymind.

If you have the means, you can support my home care expenses by making a donation to my GoFundMe page.

Live Long and Prosper,

Alice