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.

Breckenridge was the trip that changed everything. I was inspired by the landscape around me, which was so different from the low county and flood plains of South Carolina. I was also weaker than I had been in a long time. My diaphragm was struggling to keep up with the extra work of being in a low-oxygen environment. While the expectation was that I would spend most of the week hiking and exploring the town, I ended up tied to an oxygen concentrator and tethered to a portable oxygen tank during my sister’s wedding. 

I thought when we returned to sea level that I would feel immediate relief, but it didn’t come. Instead of struggling to breathe due to thin air, it felt like I was trying to breathe under water. The heat and thick humidity finally caught up with me, and by the end of July I found myself back in Atlanta asking for help from my neurologist. He said to wait it out and call him if I didn’t rebound to my baseline in a few weeks.

I carried on and worked my way through building my business that summer as best I could. I submitted my art to contests, tried to find places to display work locally and took on any commission or special project that came my way.

It was around this time that I started seeing buzz on social media about this group called Rising Tide. The co-founders of a blog that featured both my engagement and wedding were a part of starting this community up, so I thought I would want to join. In August 2015, I was accepted into the Facebook group. It was a huge help for me as I tried to navigate small business ownership as a creative.  I found it challenging to apply everything I was learning as a creative with a disability. Sometimes it was overwhelming to feel like I couldn’t keep up. So I did what any 20-something would do. I posted about it.

Little did I know what a crucial decision this was or the foundation it would lay for my business, my life and my friendships. More on that later.

After negotiating back and forth with my insurance during August and September, we finally had a solution. I would start back on a loading dose of immunoglobulin (IVIG) the first week of October. This is when you are given a full dose every day for five days in order to bring you to place of stability. Knowing my experience from the hospitalization that resulted in aseptic meningitis (you might remember this from an earlier email), I was nervous about restarting the treatment.

I had to retype this part several times because I know just how unbelievable it seems, even as a person who lived it. 

After 2 days of infusions at home, I started to exhibit symptoms of aseptic meningitis again. I was in disbelief, but there I was again in an incredible amount of pain, unable to move my neck or open my eyes. I managed to mutter to Travis from underneath a wet washcloth that I wanted to take.a drill to my skull. We knew. That weekend consisted of 2 ER visits, one for the aseptic meningitis where I was accused of drug seeking and another for an IV line infection I picked up from the first ER visit. It also happened to be the weekend that 2 weather systems joined together over South Carolina and dumped 2 feet of rain in a ~36 hour period causing the river to rise 40 feet and resulted in the death of 17 people. 

Our city lost our only water supply and I was an immune suppressed patient with an infection recovering from a swollen brain membrane and I unable to access safe water for 10 days, including my 25th birthday. I subsequently developed a severe reaction to antibiotics that included a yeast infection and dehydration. In short, I felt like I was falling apart.

I felt like Job from the Bible during this season sometimes begging for the answer to just how much more I would have to endure in that year. Lack of adequate medical care, a job loss, a major flare up starting treatment only to end up in the hospital from it after fighting for it for months and on top of that, a natural disaster. 

When I came out of remission 5 years before this a mentor wrote me a note about vocation and calling. He told me that sometimes the season we are called into is one of endurance, and often it is a lonely season that can feel purposeless. I didn't understand why I continued to be led into experiences that felt like unnecessary suffering. Why did I have to be called to endure?

As I struggled with the emotional complexity of long-term sickness and its management, I was also in a parallel space that was beautiful.  I finally was pursuing my art and starting to speak publicly about chronic health and disability. I was developing connections and friendships with other creatives who were also managing chronic illnesses. I was finding my purpose in the midst of chaos.