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 past emails here.

The spring of 2015, I was experiencing intermittent blurry and double vision at work. Sometimes I was out of breath, even at rest. I felt exhausted more often than not. I asked my manager about changing my schedule around a bit to help mitigate those symptoms. Not cutting back hours, just rearranging my schedule to work 4 days a week instead of 5 so I could have three full days to rest (and one week day to do things that you can't do on weekends like go to the doctor, deal with insurance, etc).

My experience in the workforce had been similar to what I had always tried to do: to hide my diagnosis until absolutely necessary. I had once made the mistake once of disclosing my disability status during a final interview (just a formality after a verbal offer) which resulted in being completely ghosted.  The formal offer never came, and when I asked for feedback about why I suddenly had an offer disappear they had no answer. I knew. After that, I really become careful about when and how my health was discussed in the workplace even as I became more visible with MG advocacy.

The first ever South Carolina MG Awareness Walk, April 2015

While the ADA (Americans with Disabilities Act of 1990) was put into place to protect people with disabilities from discrimination, the reality is that sick and disabled folks still experience an incredible amount of discrimination, especially when it comes to work and wealth. Just because something is law, doesn’t mean that it’s actually doing its job to protect people from harm. This is something I’ve come to know well in my own life, and also as I dug deeper into support groups and the MG community at large.

Just a few months prior to making this request, my company had donated money to the MGFA to support an MG Awareness Walk I was honored as the local walk hero in, so I felt comfortable asking for accommodations. After almost a year of employment, two pay raises, and an increase in responsibilities I felt like they knew me and trusted me. I had slowly started to open up and let them know about MG. I felt secure. The response to my request was swift and retaliatory—rather than adjusting my schedule or coming to a mutual compromise, my hours were immediately cut in half with the expectation that I was to complete the same amount of work in half the amount of time. 

Two weeks later, I was fired.

I started searching for jobs immediately, but I my heart wasn’t in it. How could I go through an interview an hiring process yet again hiding my health, trying to prove that I was just as capable as everyone else? I felt like I could never work for someone else ever again. We were buried in six-figures worth of student loans and Travis was working a 100% commission job. But we made the difficult decision that the best thing would be to shift focus and prioritize my health. We floated a small loan to ourselves from savings and I started selling my art as a business. Larkspur and Laurel was born.

I felt a deep sense of shame and embarrassment over my circumstances. 

So much so that I created a sense of separation between myself and my business. I filed for my business license as a sole prop DBA “Larkspur and Laurel”. Larkspur was my grandmother’s favorite flower. Her garden was covered in it. Her sister, Grace, was a painter. I wear Grace’s engagement ring as part of my wedding set. Laurel was my middle name before getting married and taking my maiden name as my middle name. This felt like a way to honor my family who always supported and encouraged my love of art. 

So while the name Larkspur and Laurel was deeply sentimental to me, it also was a means of self-protection and self-preservation to use a name other than my own. The shame of failure is, in some ways, what built my business. Shame even had a hand in naming it.

My mom was my first paying customer before my official launch to help me build a foundation of work to advertise my business with. She commissioned several paintings to commemorate El Camino de Santiago; a 500 mile trek across Spain that she completed with my sister over the course of summer 2014.

Larkspur and Laurel officially launched on July 1, 2015. Two days later, I left for my sister's wedding in Breckenridge, Colorado. One of the most beautiful and inspirational places I've ever been to ended up being the catalyst for one of the fastest symptom regressions I've ever had. 

Going into the trip, I knew I might experience a symptom flare up as past experiences demonstrated that I'm sensitive to environmental changes like weather, temperature, and altitude. Varying the week between 9,600 and 12,500 feet in altitude, I spent most of the trip attached to an oxygen tank. I expected to bounce back quickly once I returned home to sea level. But I didn't. 

I didn't expect that just after losing my job, just as I was building my business, I would be on the start of a year-long journey to fight for treatment, care, and quality of life.