Spinal Cord on Fire? Your Dad Dying? Cook a Kickass Curry!
Updated: Apr 30, 2020
Seven amazing weeks since my last weeklong, inpatient ketamine infusion, slowly but surely the neuropathic pain is returning. At first, it’s a twitch in my left foot, around the ankle, almost a gentle but annoying tickling sensation. After a few more days the gnawing pain will surface, and like a volcano, spreads hot lava below and above the ankle. Another week or two, and I won’t be able to bear any weight on it. My left leg will feel as if it’s on fire and simulatenously, devoured by a shark. The soul crushing tailbone and low back pain had already returned, and soon, sitting will provoke such severe pain, my brain gives up on life.
The buzzing pain started a week ago, and my body below the waist seems to exist only to torture me. The worst is knowing that my pain will morph into a daily 10, until I lie in my hospital bed in fetal position 22 hours a day, with an icepack on my tailbone and one on my left foot to trick my body into thinking it’s not being devoured by fire. Yet I will find the tenacity to throw myself out of bed, and stick to my physio and hydrotherapy, followed by stretching and weighlifting 3-4 times a week. A desperate phone call to my hospital pain team for a quick, 24 hour infusion is in vain; they stick to the protocol of weeklong infusions every 3 motnhs and nurse C. explains, a tad condescendingly "We have to be careful our patients don’t develop tolerance, abuse or addiction.”
I bit my tongue and stay polite, and patient. While my pain is once again climbing up to an 8, or 9, numbers that are incompatible with life, I learn my father is dying. He’s been dying for a long time, nine years to be exact. But the last few months, with end-stage Alzheimer’s, have been bad. And today, he refuses food, water and medications. Thankfully, my family in Holland are not prolonging his suffering: no heroic measures, no tube feeding, no hospitalization for the man who conquered mountains. The end is nigh, but he will be surrounded by my loving mom and my siblings. Living overseas, I knew this day was coming. After my October 2019 hospitalization I wrote him a six page letter of forgiveness, insights and cherished anecdotes. A letter my dad, a difficult man to love, would forget the second after my mom stopped reading to him. But my letter made them laugh and cry, even my siblings love that letter.
I would like to fly home, so this afternoon I begged the hospital for a 24 hour maintenance infusion, to be able to fly to Europe next week. I haven’t been able to fly since 2017 because sitting upright causes intense pain, it immediately worsens the spinal cord inflammation. The journey is 18 hours of Economy hell, I explained. Nurse C. said: “A Prior Authorization will take three weeks for a hospitalization anyways.” She is mistaken, so I explained as patiently as possible: “But I saw Dr. Rogelj on Friday January 11th and, as usual, was hospitalized on January 12th.” What I ought to do next time, is ask, how comes I was assigned a bed within 24 hours? That way she is forced to think, instead of me trying to convince her. Explaining life with a severe pain disorder is an exhausting nightmare.
My major triumph today was writing this essay and keeping calm. As Eckart Tolle repeats over and over, if you find yourself upset or agitated, you are not living in the present. So, I refuse to let my pain take over my humanity, since it’s destroyed too much already. I honored my dad by cooking a kick-ass curry, browsing old pictures and playing our favorite Miriam Makeba records. And I honored myself by injecting 60 mg of Toradol and fighting for my future, while profoundly living in the now.