2020: Hi my name is Kaelee and I just graduate with my Associates and a 3.9 GPA while I was working four jobs. Four of them are in my industry.
2021: Hi my name is Kaelee and I am working on getting my Bachelor's while working multiple jobs most of which are in my industry. I also took the money I have saved and invested it into my freelancing. This has allowed me to manage and rehearsal and recording studio that also has a venue at the age of 22.
2022: Hi my name is Kaelee and I pitched my skills and myself and am now the manager of the recently restored 1930's art deco venue at 23.
2022-2025: Hi my name is Kaelee and I work for the government supporting the A/V infrastructure so the scientist around me can change the world.
2026: Hi my name is Kaelee.
(I am newly chronically ill and disabled. I am not currently working because the day my short term disability ended I was laid off. I recently started going back to school because while my new medications prevents most of my seizures all of my other symptoms are a constant battle and I am exhausted all the time.)
I recently realized that I have been tying my self and my self worth to my success and productivity for years. My success in school, my success at work, and how successfully I was following this imaginary timeline we are all taught subconsciously from an early age.
I have struggled with introductions for a while now. I realized fairly early on that anyone I met going forward would be meeting chronically ill and disabled Kaelee. Not the Kaelee that ran around like a crazy person at work or that would completely exhaust herself to care for other (not healthy by the way). I have been grieving the fact that that exact version of me no longer exists. I say exact because I still care for other people deeply and will do anything I can to help; and most days you can find me zooming around in my wheelchair. But the Kaelee that could push through anything no matter the cost…. she's gone.
All of this was sitting quietly in the background until last week, when Adam and I met someone new for the first time in a while. Adam and I gave him our names and he asked what we did. I pointed to Adam and while he was explaining what he did I was scrambling to figure out what to say.
"I am currently going back to school because everything is dumb and corporate America hates disabled people and I got laid off." No I can't say that; that is super bitchy and not entirely true.
"I am currently in school, with the goal of becoming a therapist." Nope! While this is awesome you are 26 and going back to school because you never got your bachelor's because you are a LOSER.
(Not true. Not for me, not for anyone. My brain just likes to be mean sometimes.)
After about five more internal arguments, it was my turn to talk. I ended up saying: "I used to work for the government." WHAT?!? Out of all the possible answers, that was the one my brain chose. The most impressive thing I could think of. The thing I thought would make me sound successful. The thing that would make me feel valuable. And that’s when it hit me.
I didn’t just lose my health. I didn’t just lose my mobility. I lost the version of myself that I thought made me worth something.
The honest answer to that question would have been something like this: “I’m changing my career path to meet my new accessibility needs while also following my passion for helping people. I’m working on my Bachelor’s in psychology, navigating chronic illness, and figuring out what life looks like now. I also started a blog and social media to share my experience and hopefully help other people feel less alone.”
That’s the real answer. But that’s also a lot to say to someone you just met in the driveway. So instead, I defaulted to the answer that felt the most impressive. Because somewhere along the way, I learned that impressive meant valuable.
Another thing, while I love and adore my title of Adam's wife there is so much more to me than that. But these days it seems like only the people that really knew me before all of this nonsense ask about me and my interest. People ask me how I am doing, and if I need anything, and if I am comfortable. This is kind and I do appreciate it. But sometimes it is followed up by them asking my husband how I really am and how things are going. They ask like I am not even there. Or like how people ask parent how their kiddo is doing in school.
Don’t get me wrong, I talk about my health a lot. I share it on purpose. There is value in telling these stories, because chronic illness and disability are so under-represented. Those struggling with chronic illness and disability also often experience isolation and loneliness; and when you are struggling in that way an online community can make a world of difference.
Now comes the hard part. Figuring out who I am when I’m not measuring my worth by how much I can do. I need to figure out what matters to me now, what makes me proud of myself now, and how to exist in a world that values productivity more than people.
Being chronically ill and disabled sucks; there is no poetic way to say that. But it has also forced me to slow down, to rest, and to notice things I used to run past.
And now I get to figure out who I am without the pressure of proving myself all the time. Which is terrifying BUT also super exciting.
