When I was 12 I thought I was the only one in the world with an auto-immune disease, at least one that couldn’t be pronounced or spelled. Generalized subcutaneous morphea or eosinophilic fasciitis. Always wondered about my leopard skin? You might not want to google it. My brave parents. My fearless, naive little me.
Now that I’ve lived more than half my life with the condition and its residual scarring, I can see how incredibly lucky I was to have insurance and advocates. My life mattered because I had access to privilege.
As far as anyone could tell I was a healthy 12 year old when I suddenly couldn’t shoot a basketball or sit cross-legged or try on a dress. Putting my socks on became a struggle. I remember waking up early to get blood work every month. I remember almost getting used to my brother (my personal EMT) giving me shots every Tuesday and Thursday at our house and when he left home, my dad would practice on an orange and tried his best, but it always hurt, despite how hard I hid my face in the pillow.
My parents drove me to various hospitals, consulting with doctors who gave me different diagnosis and treatment regimes, some more aggressive than others. At the time, I couldn’t comprehend that the rare auto-immune condition could be terminal. My parents made a binder with my face on it and devoted much of their life during this period to researching and driving me to physical and occupational therapy, and so much more. I can’t imagine the fear and pain they experienced watching the illness spread through my body. Fortunately, after a series of scary tests, we learned that I didn’t have the type that would impact my organs. Still, the disease spread across my body to forever impact my joints and skin.
I remember my mom distracting me with puppets when I had to get a scary skin biopsy on my arm and hip. They described it to me like a cookie cutter as if that would put my terrified heart at ease.
I remember my parents waking me up in the middle of the night to numb my arm because I hated more than anything, getting my blood work done. Even though the cream didn’t do anything, it made me feel better and they entertained my attachment to the cream + numbing with ice before anyone (shout out to the one and only phlebotomist I ever loved, Ed) came near me with a needle. So in the middle of the night, they’d prepare my arm with cream and saran wrap. They took me for PUVA light treatments and advocated for me in school.
Like many girls, especially those who have experienced any kind of trauma, and all humans really, I was not taught to love my body. Being at war with your body kills your spirit. I can’t remember how my body felt before my cells started attacking me. Ever since then I’ve been in conversation, often fights, trying to remind my body it’s okay, we’re safe, you’re home now. You are an amazing, powerful force. #thebodykeepscore #whenthebodysaysno #gabormate#besselvanderkolk #somaticexperiencing