Published: 14/04/2023 Tags: Stories

Finding my place, my purpose, and my voice

My name is Kennedy Hope Kahle. I am 26 years old and live in Charlottesville, Virginia, USA.

I have Ehlers-Danlos syndrome; I was diagnosed in September 2020. My symptoms started prenatally, and at least from as far back as my memories I knew I was different in an extremely inconvenient, unsettling, and weird way. (I did not knowingly have access to Google at this time).

I believe it was 2012 when I first asked Google “Why does my elbow bend inward?” and the first result: Ehlers-Danlos syndrome. Under the headline was a picture of a young child around my age showing his hypermobility. I did observe him and I was in very similar situations. I am not sure why I didn’t seek professional help for that specific syndrome earlier. I guess you could say I was already trying to manage the acute issues and comorbidities and was in denial or possibly forgot.

Oddly enough, after expressing my concerns to my primary care doctor that I may have Ehlers-Danlos syndrome, I was referred to an orthopedic specialist who diagnosed me with EDS. No specified type, although it’s very obvious I have extremely hypermobile makeup.

In 2021 I saw a surgeon and her kind assistant with my partner for a first-time consultation at Central Virginia Oral & Facial. During this appointment this doctor I know nothing about told me that after reviewing my surgical notes she believes I have multiple types of EDS, and also said during the consult, “I think you may have vascular Ehlers-Danlos syndrome” and “You just aren’t a good candidate for surgery in general.”

I currently do not meet my insurance requirements to have my genetic makeup tested to confirm type/s. They will not cover the lab test until after I have a cardiac event or organ rupture. So very long story short- I don’t know my type.

I graduated from Shenandoah Baptist Academy in 2015 in Cleveland, TN where I spent my junior and senior years at boarding school. After graduation, I returned home to Central Virginia. For the next few years, I spent living at home, working a few different jobs, and attending classes at PVCC and BRCC (Piedmont / Blue Ridge Community College). I spent most of my free time at lakes, rivers, ponds, and hippie holes with friends, or glamping (glam-camping) in my mother’s garden cottage. I also spent an ungodly amount of hours trying to complete homework and assignments. Although, that was nothing new for me.

2017 came and I applied to Club Demo at Costco. During my time there I earned and accepted two promotions that were managerial positions. I LOVED this job, but after a couple of years decided to take school more seriously.

It started to seem I was not moving at the pace of my peers and even withdrew from several classes. Some of which I was over halfway done with, and had As or Bs in. This would continue on and off until most recently in 2020 or 21. I decided it was a perfect time that to get a new job. One that would allow me to focus and use more energy for homework, and home life.

Between finishing my job at Costco, and starting my new job at Whole Foods I was diagnosed with type 1 narcolepsy. Between school, my health, and a car accident that would total my main source of transportation I was forced to quit after only five months of being at Whole Foods.

This is when it became obvious I wasn’t able to hold it all together anymore. This would mark the beginning of a very long struggle in the career sector of my life. After the tragic loss of my Whole Foods position, I “bounced back” and got a full-time receiving job at Lowes. This was another job I thoroughly enjoyed. However, after working there for only a year, I went on paid and then eventually unpaid medical leave under the guidance of my psychiatrist. A part of me knows this was the right choice, and I couldn’t have physically kept doing my job without causing more bodily harm. Another part of me still resents this decision to step away from the workforce. After all, it offered me so much!

It gave me things like structure and confidence. Since leaving the workforce I have struggled to understand my purpose in life. I have felt like a broken puzzle piece that no longer fits. I feel very different living as an unemployed disabled-bodied individual living in an urban area where most of my peers have graduated college and are comfortably settling into their post-graduate positions. Some of them have basically mastered their trade. All the while I feel like I am just standing around with my arms by my side unsure of what I am doing, where I am going, and how I fit in.

I wanted to share my story as part of my effort to find my place, my purpose, and my voice.

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