Sometimes following someone else on social media or signing up for their email list feels like that. And that’s not really what I’m going for here. So I want to take the time (and maybe a few emails) to re-introduce myself, fill in some gaps in my story, and hopefully give you a better understanding of who I am and why we're connected in this space.

Hi, I’m Kait. I’m a reverse entrepreneur who spends my days supporting the creative community, my mornings and nights taking care of my sweet baby girl, and the occasional nap time or weekend painting landscapes.

The story of how I got here begins around September 2001. 

I was 10 years old, just a few weeks away from my 11th birthday and had just started middle school outside of Philadelphia, Pennsylvania. I was living equidistant from New York City and Washington D.C. when our worldview in the United States changed to divide time between a pre-9/11 and post-9/11 world. When I started missing more and more class to spend time in the nurse’s office, my school counselor thought maybe I just was struggling to process everything surrounding those terrorist attacks—we had a few families in our community who were impacted, and there were more than enough students in my grade who were struggling with new fears and anxiety after 9/11.

It wasn’t the news that was causing me to miss class, though I feel like I have a strong sense of connection to the immediate after-effects of that day because it coincides to closely with a major upheaval in my life. What was bothering me was that I suddenly couldn’t read well. The lines in my text books were becoming blurry or doubled on top of each other. My handwriting became sloppy and I struggled to hold a pencil. I noticed that when I had to read out loud in class, my speech would become slurred and take on a nasally quality. My smile fell flat and looked more like a grimace. 

For a few months I had noticed small deficits in my physical strength. I generally felt unwell and tired easily. I sometimes struggled to walk up steps and would fall without explanation when walking. My head sometimes felt too heavy for my neck. It was hard to brush my hair. I sometimes had difficult chewing and swallowing food and would choke. Not knowing any better or how to actually explain how I felt, I assumed this collection of symptoms were just growing pains and a normal part of adolescence.

Then, one day I stopped being able to carry my backpack. 

It was bright yellow (some things never change, I still love yellow). At the end of the school day, a friend carried it to the bus line for me. I asked a teacher on bus duty to hand it up to me as I struggled to hoist my tiny body up the steep bus steps. My bus stop was one of the last ones, so I had a lot of time to worry about making the walk from the stop to my house. I knew there was no way I could make it. The bus slowly emptied and I made my way to the front of the bus dragging my bag behind me.

“Can you please drop me off at my house?” I asked, trying not to cry. The driver told me no. She couldn’t make any exceptions to her scheduled route. I tried to find the words to explain what was happening to me, but I couldn’t. I started to cry knowing it was impossible to convey to her the urgency of what it felt like wondering if I could make it home without falling in the street or a neighbor's yard. Another student, a girl a few years older than me whose name who I can’t recall anymore, advocated for me. I don’t remember what she said or why the driver listened to her. But I do remember the look of puzzlement on my mom’s face when she noticed that I was coming down from the bus at the foot of our driveway, and not at the bus stop at the end of our road.

One of my first "projects" after being pulled from school. 

Shortly after the bus incident, the school counselor called my mom after more missed classes, absences, and visits to the nurse’s office explaining that needed to be evaluated by the school psychiatrist. The district social worker got involved and feeling that a required psychological evaluation was going down the wrong path, my mom pulled me from school. Dropping everything, my mom started homeschooling me in mid-October 2001. Around this time, a neighbor dropped a pamphlet in our mailbox for a private school for "troubled girls".

Within a few weeks, I was at my family doctor’s office who immediately started hunting down a diagnosis and setting up referrals for testing and specialists with her initial suspicion of an autoimmune disease at work. With no other way to explain it other than being with the right doctor with the right knowledge at the right time, she suspected I had 1 of 3 diseases: rheumatoid arthritis, multiple sclerosis, or a rare disease we had never heard of before affecting less than 60,000 people in the United States… it was our first introduction to myasthenia gravis.