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In 2015, an orthopedic physician officially diagnosed me with adhesive arachnoiditis, but my problems with severe pain started decades sooner. I’d survived a nighttime skydiving accident which led to cauda equina syndrome, crushed sacral nerves, and lost two inches of spinal height from the 70 mph landing on my tailbone. Sitting had been painful, and I took a pillow with me wherever I went. But over the years the burning, stabbing pain had worsened to the point where even the skin on my trunk hurt. In 2010 I was diagnosed with central cord syndrome due to a benign spinal tumor at chest level, which meant another incurable neuropathic pain syndrome.


After almost a decade of working as a physician assistant (with leg braces, wheelchair, cane or walker) I slowly descended into a soul crushing existence, which trapped me inside my body. Despite swimming three times a week, I succumbed to the crippling pain and became confined to my memory foam bed, lying on my right side. Ice packs against my tailbone and a steady level of pain medications (small amount of opiates, large dose of gabapentin) barely enabled me to keep writing. I jotted down observations and jokes in an attempt to keep up my spirit. When I found out a nearby open mic had a couch, I schlepped my painful body and manual wheelchair there, to perform live. After a lifetime of extravagant adventures such as pre-accident solo hikes and ice climbing, and much later, academic, rewarding challenges, I faced my personal demons: Performing in front of an audience with my lifelong insecurity, and loneliness. 


Among painfully cold winters in the high desert, I kept swimming and performing as if my life depended on it. Which it did. But it wasn’t enough, and the pain told me the only way out was exiting this life. My sister flew in from Holland, and drove me to a ketamine clinic, and that was the start of another adventure, in pain management. I responded well, but ketamine wasn’t a cure, and I slowly accommodated being hospitalized four times a year until I stumbled upon the right protocol of two nights, every eight weeks. Ketamine enabled me to write a wonderful, evidence based memoir and practical advice book for chronic pain patients, “The Queen of Ketamine.” Unexpectedly, both my parents passed away in 2020. My mom’s death broke my heart, at a time when my Navajo boyfriend lost three beloved relatives. 


Day to day life is still a struggle, and I had life-altering treatment in a Zoom ACT group. Thanks to the ketamine treatments however, I live independently with minimal home health care. In May 2021, I started creating beautiful art with my mom’s brushes, feeling guided by her artist spirit and love. A few weeks ago my insurance said the ketamine inpatient hospitalizations will no longer be reimbursed. So I’m facing my greatest battle yet, and although the future seems bleak I’m trying not to panic. This beautiful and heartbreaking fight has just begun. 

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