What a Ride
It was my last summer before my senior year of high school when I had my first episode after a ride at the county fair. It started with dizziness and "black out" vision that progressed to full incapacitation as I was driving home. I put it all off as an odd reaction to the ride and didn't think anything else of it. It was a rough night, but I woke up feeling "fine" the next day.
When school started in the fall, I enrolled in two college classes on top of my advanced placement course load. I was on track to be valedictorian, and I had been granted a four-year, full-ride governor's scholarship to the college of my choice as a junior. I even had a letter from the president! I worked full-time at the local nursing home and babysat daily for my neighbor as well.
It was September 29, 2011 when the next episode hit me. I was in art class. We were having a free day, so there were geometric coloring sheets on the table. I grabbed one and started on it, but just looking at it made the room spin. I put my head down on the table, and that's when I felt it. A numbness was spreading from the tips of my fingers and toes toward the center of my body. There was a violent rocking sensation in my head as if my brain was trying to break free from my skull. I tried to ask for help, but I couldn't speak. It was as if I was underwater, sandbags attached.
I couldn't even lift my head, so I stayed there, silent tears streaming of their own accord until the bell rang. When it did, my teacher came to wake me, only to find that I'd never been asleep. I never slept in class, but I guess he thought I was taking advantage of the free time.
He cleared the room and tried to help me to my feet, but my body went limp before being racked with convulsions. He yelled for help and called the nurse. When she arrived, my heart rate was too high for her to count and an ambulance was called. By the time I was loaded into the ambulance, I was beginning to recover. I could speak in slow broken sentences and move a little. When we made it to the hospital a half hour away, I was mostly normal, just slow, tired, and sore.
From then on, I would have up to thirty seizures a day. My doctor put me off of school, work, and driving. Where I'd been helping care for children and adults with disabilities, I was now the one who needed a babysitter. I couldn't be left unsupervised. Everyday tasks such as dressing and eating were difficult. My family members rotated caring for me. Even walking down the hall to the bathroom left me gasping for breath.
After three months, I was allowed to return to school, but I had to have special provisions. I needed to lie down at odd times in odd places anytime I felt like I may seize. I had to have fluids with me at all times, because I had low blood volume and was chronically dehydrated, no matter how much I drank. When I felt ill, I'd go to the nurses station and lay in a hospital bed with rails for my safety until someone could pick me up, then the nurse would wheel me out to the car in a transport chair. Even if I felt like walking, I was a liability.
My doctor and family were fairly certain that I had a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome. It is a failing of the autonomic nervous system that controls all automatic bodily functions such as blood pressure, body temperature, breathing, and digestion. It impacts all bodily systems, though symptoms tend to fluctuate from day to day. Most POTSies will experience one or multiple symptoms on a daily basis, but will tend to have a few good days interspersed between flares. My dad had suffered a similar mystery illness crisis ten years prior that tipped us off.
It would still be five more years, however, before I received a diagnosis. In that time, I struggled to work and attend college. Online classes were a godsend for me. I could sit in a recliner long enough to work for about three hours each day, then I'd need to rest. I had to be horizontal for about sixteen hours every day. I would get a job, but none fit my medical needs. I'd work myself into the ground, usually over a course of three months, then I'd have to quit and find a new job.
I never disclosed my disability until after I was hired, and when I did, it was only to keep anyone from calling an ambulance. The hospital couldn't do anything for me, and I couldn't afford the bill. I couldn't live on my own, and it was hard sometimes for my boyfriend to support us and care for me. We really needed me to be able to work.
During one of my jobless seasons, I began visiting the local library and focusing on stretching my limits as far as I could. In a few months I found an ad for an office assistant position with the Ozark Foothills Literacy Project, a nonprofit teaching adults to read in rural Arkansas. I read all I could about them online, then I applied for the job. I was shocked when I actually got it the next day, and on my first day, I disclosed my disability. My boss startled me. Instead of regretting her decision, she asked me to type up a care plan with emergency contacts.
Through my first two years, I was given free professional development, a flexible work schedule, and flexible sick days as well as a full week off to go to Vanderbilt's Autonomic Clinic in Nashville, TN. I was finally diagnosed there. This incurable disorder that had ruled my existence for five years was diagnosed by Dr. James Muldowney in less than five minutes, and then he spent two hours with me putting together a plan to manage my symptoms. I credit him with giving me half my life back. Through medication, a high salt-high fluid diet, and physical therapy, I went from missing three to four days a month to a day every three to four months.
I highly recommend nonprofit work for people like me. They may not be the highest paying jobs, but they are the most compassionate and most flexible. After my second director left for new work, I was promoted to director, and I've now been with OFLP for five years. In 2011, I couldn't have even imagined being able to work full-time or have a family. Now I work full-time, have a husband and two year-old girl. On bad days, I can work from home with my laptop.
My sister was diagnosed last year with the same disorder. It runs pretty strong through four generations of my dad's family, but the disorder itself wasn't identified until the 1990s. My dad was patient zero for our area in the early 2000s. She stays at home with her children, but has found motivation to create beautiful acrylic paintings. started crafting myself (crochet) when I was bedridden in the past. I've picked it back up and we are going to our first craft fair in two weeks.
I definitely have had times when I felt devastated, when I lamented the mother, employee, and person I could've been if I'd never gotten sick. However, I've adopted a new mindframe. There are so many things that I am good at, and even if this world isn't exactly built for me, I have a place and a purpose in it.
Do I have to disclose my disability to my employer? What accommodations am I entitled to request? Can I be paid less because of my reasonable accommodation? So many questions might arise as you go through the employment process.
There are simply no excuses for not hiring chronically ill workers. Doing so would detrimentally reduce your available talent pool.
Let’s start by getting this straight: you do not have to disclose anything about your health to an employer. If you wish to disclose, you’re allowed to disclose at any point in time, whether that be during the interview, during the negotiation process, once you’ve started, or even three years into your job.
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One of society’s biggest misconceptions is that people living with chronic illness are not able to work. We can — we just have to reimagine what that looks like.
At Chronically Capable, we’re building a platform that does not discriminate - based on race, gender, disability, or even health conditions. Having been in constant contact with employers and job seekers during this time, we recognize how much work there is to be done.
This past week, the internet has been flooded with news surrounding remote work, as employers are flocking to adapt and train their employees to work from home. It’s funny to me that it took a global crisis for businesses to realize that it’s not expensive nor difficult to allow their employees to work remotely.
It was my last summer before my senior year of high school when I had my first episode after a ride at the county fair...