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 email one and email two!

We were only a few months in to the life changing diagnosis of myasthenia gravis when my mom started pursuing surgery for me. After meeting with a handful of cardiothoracic surgeons and completing a CT scan to check and see if it was enlarged, we selected a surgeon and set a date. August 19, 2002.

The biggest challenge beyond the emotional processing that follows an incurable disease diagnosis is the wondering of what’s next. What more could we do? I had my diagnosis, and my breathing and swallowing has improved but I was still suffering. I still was too sick to return to school so I was looking at a second year of being homeschooled. There were still day days when the best I could do was change out of the previous night’s pajamas into clean ones and go back to bed. 

A few weeks before the surgery, I went to summer camp for a week. It was a reminder to me of how different my life was from what I expected it to be, even with a diagnosis and a medication regimen. 

When my friends were taking turns on an afternoon ropes course that ended with a zip-line over the lake, I watched from the ground knowing that I wouldn’t be able to climb up to even try the zip-line with everyone else. Not wanting me to miss out, a camp facilitator rallied a few friends to hoist me up so I wouldn’t have to climb. While well intentioned, I felt humiliated by having to be hoisted up by my friends. I remember wanting to shrink into the smallest possible version of myself, wishing that they could just let me be okay on the ground. 

That day on the ropes course is one of my first “post diagnosis” memories where I can definitively point out the complexity of living with a disability in a world built for able-bodied people. I was desperate for a chance to regaining some sense of normalcy, and I was hopeful that this surgery would be a way for me to reconcile with a body that often felt like a prison.

The surgeon we ended up scheduling with had studied under the surgeon who pioneered thymectomies for myasthenics, and yet I was only the 4th thymectomy she had ever completed on her own. At that time there was very little clinical research on the effectiveness of thymectomies. Most data was anecdotal. What we know now from the recent release of a 13 year study of thymectomies in myasthenics around the world that more than half who undergo this surgery within the first five years of diagnosis will see a reduction in symptoms and report a higher quality of life. So despite any remarkable information on my CT scan, we moved forward with surgery.

In pre-op testing and my first day on a regular floor after 2 days in the ICU.

What should have been a 2-3 hour procedure with a small incision ended up becoming a 5 hour lateral sternotomy where the sternum was split open much like it would be for open heart surgery or a double lung transplant. We knew that a was a risk going into the surgery, but honestly did not think much of it as my imaging did not show the gravity of what we were dealing with. The imaging completed in advance of the surgery registered the gland as normal for my age, and that it had mostly been replaced by fatty tissue.

What was discovered at the start of that procedure was something I have learned is a common, but not often discussed, part of the medical world. Imaging is not always accurate. I had thymic tissue covering the entirety of my chest cavity. It was growing up into my neck. My surgeon made the decision in the OR that the best chance of removing all the tissue would be to fully open to reduce the risk of regrowth and future surgeries. 

To say it was a surprise to wake up to would be a mild understatement, but the best part is that my biggest concern wasn’t the 10 inch incision across my chest or that I would be spending a lot more time in the hospital than anticipated. No, my biggest concern was realizing I was not wearing underwear in the recovery room (it was removed to insert a catheter). Sorry to all the medical professionals who had to hear me rant incoherently about needing to find those undies.

This is the part where you’re waiting for the redemptive and inspiring moment...

I was cured! I suddenly could do everything I wanted to do. 

Spoiler alert: still sick, not cured, and definitely can’t do everything I want. 

The truth is that while we did see immediate signs of improvement, it took 5 years to see the full results of the thymectomy. The initial recovery was long, and felt even longer because we were expecting it to be a less invasive procedure. At the time, it was one of the hardest and most painful things I had endured. It was the first of many hospital experiences and many scars to come. 

I look back now on this surgery and I know it changed the trajectory of my disease and life. After those 5 years of slow and steady improvement, I was granted one of the most treasured and precious gifts of my life: a temporary remission. I will be honest, I wasn't prepared for the next chapter.