If you’re new around here, I am getting personal in this series of emails. I want to share more about how I ended up in this space as an artist, mom, advocate, and community support professional.  You can catch up on them here: one, two, and three. This email is a little early due to the Thanksgiving holiday, so hello to your Tuesday inbox!

Remission is the most talked about state when you’re newly diagnosed. It’s a utopia that every specialist wants to aim as the final destination. I was a slow moving case post-thymectomy. There was immediate decreased dose dependence on medication, but with a lengthy post-op recovery I still needed to be homeschooled for another full year. I started having more good days than bad days, and felt like I was gaining a better grasp on the changes to my life. I wrote a letter to the school counselor who wrote me off as hysterical and logged my daily symptoms. I spent more and more time investing in art and literature because it brought me joy. I loved the freedom and sense of self I was developing by focusing on these areas. I was still working through stages of grief at this point—one of my biggest regrets is not seeking mental health support in the years immediately following my diagnosis to help process the emotional toll and trauma that accompanies a diagnosis like MG.

We slowly crafted a plan to return to school over that second year of being homeschooled. This was another first: using resources for disability (comfort and confidence using the term disabled didn’t happen for me for many more years). I needed accommodations to access public education, so we set about obtaining a 504 plan that would allow me to return to school on a modified schedule. From there we created a list of accommodation requests. Every year from 2003 until I graduated in 2008 was an ordeal and a fight, but it became my norm.

I completed my core subjects at school and was exempt from extracurriculars so I could start the day around 10 am rather than 7. I was excused from needing PE credits, was given a pass to leave class 5 minutes early to have enough time between classes, and had an open pass to visit the nurse as needed for medication because mestinon is does PRN (pro re nata aka when necessary). I didn’t ride the bus anymore after school because I was a liability. We had to go through this every single year: reviewing the plan, adjusting it based on my needs and what the school was willing to offer, and then host a meeting with every teacher to review it. My mom was, and often still is, my strongest ally when it comes to my health.

Transitioning back to public school was when I started developing the high drive for success I have now. Not because of a supernatural work ethic or a desire to be the best. This was born out of a constant feeling of being behind. I had missed out on so much. I would continue missing out on so much. While I flourished in the arts and writing while being homeschooled, I floundered in math and science when I took my re-entrance assessments. I felt that acutely when I returned to school in basic classes after spending all of grade school in advanced learning programs, and it was an uncomfortable adjustment to see friends who I had always been side by side with excel beyond what I could manage. 

I shared about fighting for access to education in the 2017 RISE Summit with HoneyBook and Rising Tide (I come on around 1 minute and 23 seconds in)—you can listen/watch here.

Outwardly, there was no obvious mark of being diagnosed with an incurable and debilitating disease. To my classmates I was someone who and left and come back. This was in pre-social media days. Before texting and the immediacy of information. Many kids that I had grown up alongside had no idea what type of upheaval I had just been through, so when I returned the modified schedule and accommodations didn’t make sense.

If they knew anything about my medical diagnosis, the assumption was that I was pretty much cured because of this major surgery. One friend who did keep in touch with me during the two years I was out of school started spreading rumors upon my return that I had exaggerated the seriousness of my health. She was one of a very small group of peers who visited me in the hospital after I was transferred out of the ICU. Even several years later when we were in high school, I found out she was still telling our classmates that I wasn't actually sick.

I expected the scrutiny from my peers, but it was difficult to receive it from my teachers and school staff. When I started driving in high school, we requested a parking spot because the district wouldn’t let me ride the bus. They gave me a disabled parking pass so I could take a reserved spot in the front staff lot and not walk as far as the distant student lots. I was chastised by staff for getting out of my car without a mobility aid. My plates were reported to the office a number of times for parking without a permit, despite having one displayed as required. Every year the school sent letters home threatening to hold me back because of the number of absences, despite a provision for unlimited absences in my 504. I was often needing to miss full or partial days for doctors appointments or to manage a bad day of symptoms.

I was a straight A honor society student who had to petition annually to advance to the next grade.

It was during this time that I developed a work ethic that is still with me today that is entangled with roots that are deeply entwined with a fear of falling behind and a desire to prove myself. I work with a fierce sense of purpose and justice because for years I’ve lived in a world where I feel like I am constantly being left behind. I yearn to stake a claim—to take up space, to be believed and understood, to shake away the cloak of shame that accompanies disability. It’s both a superpower and a vice. I’m doing my best to unpack and manage in each new season of life. 

It was a sense of being “other” that opened me up to the next chapter of this little narrative. It’s when I first realized the importance and power of community. 

I traveled west, and it changed my life.