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, three, four, five, and six.

What I did not know about remission is that most data now shows that less than 5% of MG patients ever achieve remission. When they do, most average 5 years or less. 

What is remission to begin with? It’s a period of time in which a patient is completely symptom free without the use of any medication. We spent so much time talking about getting me to remission and pretty much no time talking about what happens next. My assumption was that nothing would happen. The trials of MG would slowly start fading into the background and become a learning experience.

A few weeks into that fall semester of junior year, I was sitting in a Starbucks near campus studying with a housemate. We were talking about how exhausted I was feeling and I remember asking her (or really myself) if it was possible that I could be getting sick again. It was the first time in a few years I had really openly talked about MG. There was a gradual realization during that conversation that there was a very real possibility that this was not a part of my past. It was a part of my present and my future, and I would have to start talking about it again. 

During one of our nightly community dinners in the Dexter House (we cooked and ate together 4 nights/week), I told the 15 others gathered around the table about MG and that I was pretty sure my remission was over. I honestly don’t really remember what I said or how it all played out. I remember a lot of tears on my part, and an overwhelming sense of being alone despite being surrounded by people I loved. That is one of the strange parts about chronic illness. Even when you have support and friends who genuinely want to understand, the experience of being sick is so far removed from the “average” experience it can be isolating and lonely. 

I was getting to know community in a new way, a someone who felt "other".

My incredible housemates in the Elijah Project

I did not expect to end up in a city 300 miles away from home without a care team. I tried getting set up with 2 different neuromuscular clinics in Boston. One wanted to redo all of my diagnostic testing, which I knew was going to be painful, expensive, and unnecessary. She thought I was just anxious. The other told me that I should feel lucky that I wasn’t as sick as some of their other MG patients. He refilled my prescription for Mestinon and sent me on my way. I started to lose hope when I realized the medication wasn’t helping my symptoms and was exacerbating esophageal ulcers I had recently been diagnosed with as well. My parents drove up around this time to visit for my birthday and realized just how rapidly my health had faded. It was something none of us were prepared to face.

Physically, my body was beyond exhausted—brain fog and chronic fatigue were overtaking my days. Everyday tasks like driving, making my bed, or walking to class were often too difficult. My vision was blurry, my smile was flat, my eyes were constantly droopy. I dropped my paintbrush constantly during studio classes because my hands were too weak to hold them. I had to request a stool to sit at my easel because I could no longer stand for the studio time in class. My breathing became labored, even at rest. Before heading out to my birthday dinner I remember crying to my mom asking her if I would ever be able to be a wife or a mom if I was getting so sick again. All those doubts about my future came back with new vigor and vengeance.

A week later, my mom drove up again during our fall break. With her help I talked to my professors and advisors and took a leave of absence from school, filing for incompletes in all of my classes accordingly. I called my pediatric neurologist and they petitioned the administration to continue treating me because I was still under the age of 21. We packed up my books, art supplies, and clothes and headed back to Philadelphia not knowing when I would come back.

It ended up being a 6 week leave of absence marked by a hospitalization, starting IVIG infusions for the first time, and facing my first experience with aseptic meningitis. AM is a rare but serious side effect from IVIG that causes the membrane around the brain to swell in response to the infusion. Despite this adverse side effect, there was hope that adjusting the rate, adding IV fluids, and adding steroids to decrease inflammation would allow the infusions to be effective so we continued them. As a result of that first experience with AM, I suffered from chronic migraines that resulted in 2 years of having migraines more days than I didn’t have them.

I was learning to accept that my new normal, even with treatment, would look very different from remission. I was about to start another season of hard decision and missing out. Around the time I was admitted to the hospital, we got the call that my grandfather—my last living grandparent—was reaching the end of his life in California. My final goodbye to him was on the phone because I was too sick to travel. It felt nearly unbearable to be in the position of feeling like I could not fulfill my obligations to my family and  could not show up for others the way I desperately wanted to.

After the hospitalization, the meningitis, and the death of my grandfather, I returned to school to take finals in the classes I had been able to keep up with from home. I set up with the academic support center for assistance to make up quizzes and tests, and set up a plan for accommodations for the rest of my junior year. That spring semester, I spent one full week each month traveling back to Philadelphia for treatment. After flying or taking the train home, my mom drove me down to day medicine at DuPont hospital in Delaware where I worked from the hospital bed for the day. I’d then spend a few days at home very sick from the infusion alternating between keeping up with assignments and resting. Flying, driving, or taking the train back up to Boston, I would spend the next 3 weeks catching up on what I had missed before starting the process all over again. 

After a difficult conversation with my Education Program advisor, I withdrew from 2 of the 3 Ed classes I had taken that fall semester and ultimately withdrew from the major. There was no way I could make up the observation hours I had already missed, and my treatment schedule would put me at least an entire year behind in the program. 

Coming full circle with art in my post-diagnosis life, becoming an artist fell into place. To graduate on time, I knew I would have to forgo my dream of becoming a teacher and drop the desire to #doallthethings and focus on completing the studio art program with a concentration in painting. Not through my own choosing, but through the painful process of coming out of remission and closing the door on a newly realized dream, I became a painter (and if you can believe it from the girl who niched down to watercolor landscapes, I loved mixed media figure painting). 

I didn't like calling myself an artist. Not yet at least. I hated that I had a taste of freedom that didn’t last. I hated that I was missing out on the life I had allowed myself to start to dream of. I had met a part of myself when I was in remission that I hadn’t fully known was there—the part of me that was centered on developing leadership skills. I had found a sense of purpose in supporting others. I grieved what I felt was a loss of that part of myself that I had just started to get to know.

In retrospect, I know it is a bittersweet milestone. So much of what I know today to be good and beautiful came from this. The story wasn’t over yet, and in fact a new chapter had already started. 

Next time, let me tell you about the blind double date.