an update from Pea Flower Tomioka
For the first semester, since I began this journey towards building my art therapy program from the ground up, I am not enrolled in any college classes. It feels strange not devoting my limited time to studying, but I still keep my clay focus in sight. Those weekly classes still take place- I don't get college credit for my pottery work. Instead, I'm using this semester to focus on my health.
At the beginning of this year, I was officially diagnosed with Ehlers Danlos Syndrome, which affects the connective tissues throughout my body. It's in large part responsible for most of my health problems, and it's wonderful to have a diagnosis that ties up my life more neatly rather than an ongoing, ever-changing list of issues that specialists argue over who they believe is correct. This diagnosis is irrefutable- unlike the previous ones. Before, I was under the care of a neurologist who had diagnosed me with Multiple Sclerosis. Five years and two neurologists later, my brain lesion is in the same place, and all of my other symptoms are explained by EDS. Believe me; I am THRILLED not to have MS. EDS comes with its own issues, however... many of which have been prominent in my life for the last several weeks. My ability to engage and experience the world around me has been savagely cut short. I can't walk without risking dislocation. I don't have the energy to complete physical tasks like grocery shopping or my beloved weekly clay class. I'm fighting to make it to the end of each day without falling down, and I am so incredibly tired.
The amount of brain fog, pain, and immobility I experience every day slowed me down considerably. The shop is coming together more slowly than I would like, and the post-covid revamp of our family photography business is all but nonexistent. Each day is consumed with just surviving it without injury, and I'm scrambling for any kind of support I can get my hands on.
My first pair of crutches arrived two weeks ago. I've been able to successfully navigate doctor's appointments and 3x weekly physical therapy in large part thanks to the stability these forearm crutches provide. They inspired my first Dazzle Zebra stickers, and I've been pouring my savings into medical braces and mobility options ever since. At this point, I've dislocated both of my femurs from my pelvis three times in the past two weeks, but my insurance still won't cover a proper brace. The vast majority of my medical needs are out of pocket for now, so the level of scrambling is high. I'm determined not to let this semester off of college slow me down, but my hips dislocating is the speed bump that tore my car's undercarriage to shreds. I don't know how long it will take me to recover from this, especially without the mobility support I expected my insurance to provide. I'm doing my best.
My best is good enough. My body is trying. My career is not on hold. I will be stronger for this.
But I do hate the waiting.
About the author
Pea is an artist focused on building an art therapy platform through transformative art and positive erotica to help victims of sexual violence reclaim their power. She lives on a small island and hides from loud noises.