Hi, I’m Kit, and I tend to fit into these boxes:
Optimistic realist. Artist. Unitarian Universalist Buddhist. Writer. LGBT+.
I live with an acquired, incurable, viral-induced neurological disease called myalgic encephalomyelitis, that profoundly affects all muscles in my body. Four years after its onset I contracted Lyme disease, then several even worse infections, including bartonella. After years of treatment failure and relapse, each one more severe than the last, I made the painstaking choice in 2013 to forego any additional treatment for these infections in favor of living my life while I was still here to do it. The following year I began non-invasive intravenous immunoglobulin replacement therapy (IVIG) in hopes of at least slowing things down, and it not only worked, but it has now been three years without any known recurrence of bartonella.
However, because of my pre-existing primary immunodeficiency disease and extremely delayed diagnosis, I had already developed late stage neuroborreliosis, or Lyme disease that has spread to the brain and spinal cord. At this stage, there is no known cure, and the focus becomes keeping the bacterial load low enough to prevent further damage and/or lessen the frequency of relapses. Due to my continued inability to tolerate the necessary antibiotics, it was confirmed earlier this year to have progressed to multiple sclerosis.
This site started as my health diary to track symptoms, progression, and progress during the years of grueling treatments to save my life. Gradually it changed into my place to talk about all things related to chronic illness and disability.
Now, it’s my place to express my creative path to wholeness, particularly through the lens of acceptance, authenticity, and Buddhism. I’m no longer living daily in survival mode and have the privilege of focusing entirely on recovering and maintaining my strength, psychologically, spiritually, and of course physically.
Thank you for reading, and please feel free to write, comment, or just browse at your leisure. (:
If you’re interested in the extended version of my health story, you can click here. Updates in progress)
last updated May 2017
a rainbow at night on:
Note: The “arainbowatnight” on Tumblr and Instagram is not me.