Kate Zenor. Courtesy Kate Zenor Kate Zenor was a healthy 24-year-old. Then, in 2020, she started fainting multiple times a day.
It took seven months to receive a dysautonomia diagnosis; now, her life looks totally different. This is Kate’s story, as told to PollyAnna Brown. This as-told-to essay is based on a conversation with Kate Zenor, a 25-year-old cosplayer and bookbinder from Baton Rouge, Louisiana.
It has been edited for length and clarity. Around January 2021, I kept fainting and couldn’t figure out why. At the time, I was a perfectly healthy 24-year-old aspiring actor living in New York City, but soon, I qualified as disabled.
At first, I thought I wasn’t eating enough. I decided to spend two weeks with my chosen family in Louisiana, thinking they could help me get back on track with food before I’d then go back to New York. But when the fainting never stopped, we realized something more serious was happening.
My medical journey has been scary, frustrating, and confusing for many reasons. Prior to this time, I looked like a healthy twentysomething by all accounts. Many people — including my family, a few friends, doctors, and even strangers — would look me up and down and tell me I was fine and that it was all in my head.
This was despite symptoms like extreme fatigue, serious headaches, muscle weakness, and disorienting dizziness. Some doctors chalked it up to anxiety or didn’t listen to me at all; one even laughed at me. My thoughts raced between wondering if this was something fixable or if it was permanent, and hoping someone would be able to give me an answer.
It took seven months of appointments, tests, and trying to ignore others’ eye rolls before doctors finally diagnosed me with a form of dysautonomia called neurocardiogenic syncope — also called chronic-vasovagal syncope — in July of 2021. Life with an invisible disabilityDysautonomia is an under-researched disorder, and there is currently no cure. When I received my diagnosis, doctors told me the mental, emotional, and physical stress of quarantining in my childhood home at the start of the pandemic from March to October of 2020 likely triggered it.
After my diagnosis, doctors and I put together that I had exhibited minor symptoms earlier in life, such as fainting when I overheated as a child, being unable to sweat like other people do, having chest pains at age 19, and being unable to regulate my body temperature. However, it wasn’t until losing weight while quarantining in a stressful environment that my dysautonomia came on with its full force. The process of going from able-bodied to disabled was — and still is — jarring.
I’ve been mourning who I used to be and figuring out who I am now on top of figuring out how I fit into a world that was not built for me. The learning curve has been a steep and emotional process because suddenly, some of the options I have when it comes to what I can do have vanished. For example, I can no longer drive a car, keep regular plans, or get around without help.
My acting career as I knew it was over; directors told me they couldn’t cast me because I was a liability. With that, the entire plan I’d seen for my life vaporized. I’ve had to find a new purpose and a new way of supporting myself.
Finding my independence after my diagnosisIn the middle of all this, I have worked hard to maintain a sense of independence since my diagnosis and found new activities that I enjoy. Luckily, TikTok and bookbinding have been my sanctuaries. At the beginning of lockdown, back in July 2020, I felt like I was bouncing off the walls and needed something to do, so I started a TikTok account for cosplay.
I wasn’t quarantining in the best environment; I needed an escape, a creative outlet, and a way to connect with others. Kate Zenor in cosplay. Courtesy Kate ZenorThen, in January 2021 — around the time my health began to decline — I started to learn bookbinding from videos on YouTube and TikTok.
I wanted to do something artistic and creative, and I took what I learned and used things like Amazon boxes, fabric, and big books as presses to make journals. I opened my Etsy shop in June 2021 after only six months of bookbinding. I had been working hard and thought I was ready to sell a few of my journals.
Setting up my Etsy store was fairly simple; I linked my bank account and started listing products. I spent a day doing fun photo shoots with each book and gathering the information I’d need to sell them. For each post, I listed the price, dimensions, and materials I’d used to make the book.
Then, after creating my initial listings, I posted videos to TikTok and immediately got a few orders. Conserving energy while running a business and doing cosplayIt’s been a little over a year since I opened my Etsy, and now I see that I didn’t know what I was doing at first. But I learned how to run the business as I went.
I’ve improved in all facets of the business — especially in the bookbinding itself. It hasn’t all been smooth sailing, though. Last fall, my health was in particularly rough shape and I had to take a break from bookbinding for a while.
There have also been orders that have been harder than others. The first difficult order was a commission for a giant, aged Dungeons and Dragons-style tome. It felt out of my league; it took me several tries before I finally got it right.
Now, it’s one of the commissions I’m most proud of. One of Zenor’s commissions, in a Dungeons and Dragons-type style. Courtesy Kate ZenorIn working on my commissions and collections, I’ve had to learn how to contain everything I do in a small space because I’m not as mobile as I used to be.
My room is where I do both my bookbinding and my cosplay videos for Tiktok; everything happens in that small space. When I’m making videos, sometimes I set up a stool to sit on, but I hide it to make it look like I’m standing. In fact, for most of my cosplays — except for Sarah Sanderson, Eda Clawthorne, and Jinx — I’m actually sitting.
I set up everything in advance on a little table near me where I put water, a Gatorade, and any props I need so I don’t have to get up. As for outfit videos, I usually film those standing up, but I sit down between takes to conserve energy. Finding my community has given me strengthThe best part of creating my own business as a young, gay, disabled woman in the South has been regaining some of my independence and building a community that supports me.
My mutuals are mostly women or nonbinary people, many of whom are also queer and/or disabled. Some of these people have become close friends of mine outside of TikTok, and I don’t know what I would do without them. Since I started fainting and received my diagnosis, going out for social activities has been hard for me.
Being able to connect with people in this way has been powerful, especially connecting with other disabled people who can understand many of my experiences. Read the original article on Insider.
From: insider
URL: https://www.insider.com/i-faint-several-times-a-day-and-my-diagnosis-took-seven-months-2022-8
