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To My Chronically Ill High School Self Trying to Pick a Career

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I just celebrated my one year work anniversary as a technical writer. I spent it working from home, bruised and aching from a rough physical therapy session that left me struggling to stand up at the office…so I came home. After canceling or rescheduling the night’s plans for a day with less pain, I was cleaning a computer up to gift to a friend in college when I came across a letter that I’d written to my high school self while I was in graduate school.

I went to an extremely demanding high school, and while I was there, I experienced a traumatic brain injury. On top of the latent joint hyper mobility issues that were just starting to cause problems, my senior year of high school was a haze of post-concussion syndrome with unproductive attempts to treat chronic headaches and paresthesias. I felt confused and lost about who I was, what this pain meant, and how it would affect my future.

This became a hauntingly paralleled experience while I was in a masters program. The summer between my first and second years of school, I received shocking news that there was a massive cyst in my abdomen that “probably” wasn’t cancer, but would definitely require surgery (it wasn’t cancer, but it did have teeth). I was devastated and nervous. I had an internship with a software company for the summer, and didn’t know whether I would be able to participate in the program while recovering at home for four weeks after surgery. Four weeks off site for a 12 week internship seemed like a lot to ask.

To my astonishment, my manager said it was fine.

I couldn’t believe no one had ever told me to consider working in tech for the logistics of the day-to-day job. I was in grad school to transition away from environmental science, which had become an inaccessible field to me. Measuring plants in a swamp while on crutches or wearing braces? Good luck. It’s also a field where funding shortages cut everyone’s checks and everyone’s sick time. But when you’re not tied to a lab or a field site, you have far more flexibility for accommodations. Working at home is almost standard practice in many fields now, not just tech – a mind boggling concept to me with my years of customer service and lab tech work.

My internship manager let me work from home, and it changed my career. I returned to school with the question, why aren’t careers in fields where physical location or ability more accessible to people with chronic illness and disability? I began researching accessibility, disability rhetoric, and disability in technology. Eventually it led to my graduate work designing a class on accessibility and accessible course materials for the university to provide to instructors. The entire time, I sorted through the feeling that I wish that someone had told me how they chose their career, when a big part of that choice was their health. I wish that someone had told me how it was OK to be disappointed, and that it was OK to take care of myself. Most importantly, it was OK to recognize when something wasn’t working, and to find something that did.

So I wrote myself a letter:

Hi you,

I know right now things are kind of scary. You’re a senior in high school, and everyone around you is pursuing their dreams. We both know you’re starting to realize that you can’t physically handle those rigorous college programs you have your heart set on. (Spoiler, when Massachusetts Institute of Technology ultimately defers and then rejects you in a few months, you’re going to feel nothing but relief.) It’s so hard to talk with anyone about how every failed treatment, every negative side effect, every day you go without an answer is terrifying you. The headaches won’t go away, and the medicine makes it all worse. I’m so sorry, but things are going to get worse for a few years, but you are so stubborn that you refuse to give up on your ambitions. You grew up wanting to cure cancer and the fact that your doctors can’t seem to figure out how to treat your headaches has been a shock to say the least. You thought only cancer was incurable.

Past me, I’m not saying give up, I’m saying adapt. You are an incredible writer for a 17-year-old. You love people, math, puzzles and essays, so why are you trying to be a biochemist? You hated chemistry. Your English and history teachers keep telling you that you have a skill, so why are you so offended when everyone tells you to consider science writing? It hurts when you wake up in the morning, it hurts when you stand up in lab all day, it hurts when you do anything that isn’t reading or writing. Your hands will ache every time they wrap around a pipette or forceps. Your fingers hyperextend as you fumble with a pen to write labels on test tubes. The plants you’re going to work with cause you to have asthma problems. One day at work, even though you exercise regularly and are in “good” health, you’re going to open a door and your ribs are going to sublux. It’s going to hurt so badly that you can’t hide it, because every breath you take will feel like someone stabbing you in the chest. Your coworkers will notice and they will worry since they are good people and they don’t want you to hurt. They want you to be OK, but they also need your help – except you can’t work, and you’re scared they’re going to ask you to leave, which would be a disaster because you’re hourly. Hourly doesn’t come with sick time. Because you’re lucky to work with thoughtful people, they ask you to write instead.

You love writing. You love it because it doesn’t make you hurt, and you can still do the thing you’ve always wanted: research, science, work, self-sufficiency.

Listen, you, stop fighting with your body. Being chronically ill is crap. It really is, and no one wants to tell you that things are going to be harder for you, but things are going to be harder for you. Accept this, work with it instead of ignoring it, and it’s going to open doors you never imagined.

Younger me, you are so altruistic. You can’t fathom a career that doesn’t help other people. You don’t have much, and any time you have anything, you just want to share it. Writing is a way to share something you don’t realize you have. There is so much knowledge that could help people, and it’s trapped inside minds that have difficulty articulating themselves; people who want someone to help them say what they mean. It’s buried in forgotten papers and forgotten places waiting for someone to find it and share it. Pass on the information to people who need a detail or a study in order to get approval for a new medicine, release a new technology, or just make a website accessible.

So here it is, the advice that maybe you’ll take.

1. Chase your dream life, not your dream job. And be realistic, none of that “I want to be an Olympian” nonsense for you, because you’re not, and you’re going to be so unhappy if you chase that job. Although, maybe taking up swimming as a hobby isn’t a bad idea, even if you won’t go to the Olympics.

2. Ask for help, and get used to asking for it. Asking for help lets you meet people, lets you succeed, lets you safely experiment. Besides, you love to help. Asking for help lets others feel comfortable asking you for help.

3. Listen to advice, but don’t take all of it. Except this. Take this piece of advice, because everyone has different experiences, and not everything will work for you. It’s OK to say no. People will tell you no, too, and that’s OK. But you totally should have listened to all those people who told you to pursue writing. They knew what they were talking about.

4. Your ideal job is going to be at the intersection of three things: what gives you security, what affords you happiness (in either free time, coworker culture, or field), and what interests you. If you feel scared about your resources (health or money), are anxious around the people you work with, or are bored, you’re going cope with regret.

5. Balance what you get with what you give. Taking care of yourself is not a vice, and exhausting yourself for others is not a virtue. There’s a sustainable level of giving and keeping that will not only bring you joy, but also help others.

Your relationship with your health and your abilities will always be complicated, but you’ll get better at it. You’ll get better at not knowing. You’ll get better at handling the curves. You’ll become an expert at being you.

Oh my precious self, you wouldn’t listen to me anyways, and maybe that’s just how it is. Maybe these are things that must be learned, but cannot be taught. Even if that is the case, and this is advice you wouldn’t take anyways, maybe it would at least make you realize that you’re not going through it alone.

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Getty image by dusanpetkovic

Originally published: February 27, 2018
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