It struck me fast and cruelly. That afternoon, just hours before, I took a long drive on a hot May Carolinian day. Listening to music, hanging my hand out the window and feeling the wind through my fingers, and laughing with my sister were all part of those hours before it happened. Then came the blow—this pain to my pelvis that felt like a bloodless stabbing. I was foolish. I thought it was a passing crisis and so did every doctor I saw before I received the news: I had a life-altering disease with no known cause and no great treatment options. I had endometriosis. There I was, a Ph.D. student in Politics and African Studies at a prestigious university in Scotland, watching everything I worked so hard for tumble like too much laundry in a hamper. I didn’t really have much to start. I had no financial safeguards. I put myself through school winning scholarships and I tangled my identity with my ability to accomplish and thrive academically. I had no other choice but to return home and tumble with the diagnosis. What was worse was friends and family with a poor notion of the nature disease and even less desire to educate themselves, accused me of intentionally sabotaging my career, urged me to seek psychiatric help, and dismissed the idea that the symptoms could be tangible. I am not sure if the fact that my endometriosis specialist and surgeon found scar tissue, fibroids, and chocolate cysts mattered but I would soon learn that is part of the nature of illness. So I lied in bed surrounded by heating pads, the remote control, pain medications, and silence. It was a pain medication that ultimately sealed my fate and made the complete metamorphosis from a blooming academic to a full-time patient. If I could go back and warn that young 22 year old at the top of the staircase, I would. I would tell her to go back to bed and lie down maybe just for a few seconds and your blood pressure wouldn’t plummet. She wouldn’t have that violent plunge head first down the staircase. But it happened and the rest of my former life was gone when I finally opened my eyes.
My neurologist couldn’t completely establish the extent of the damage to my spine and so I underwent the particular torture of a spinal tap. In his office, two days later, unable to open my eyes due to a puncture headache from a cerebral spinal fluid leak, he gave me the news that the injury I sustain was far worse than he anticipated. I had a torn sacral ligament, herniations from the lumbar vertebrae 4-5 and sacral vertebrae 1 and 2, damage to my sciatic nerve, impingement on the cervical vertebrae 5 and 6, and severe spinal stenosis that was placing a great deal of pressure on my spinal cord. Surgery was recommended to relieve the stress on my spinal cord. It is hard to explain the particular pain that occurs after a surgery on your spine. The word pain is inadequate to understand the evil that arises. Your body screams and begs for mercy on repeat like white static from a television. There is no relief, no medication that can touch that pain, no beautiful place for your mind to take a voyage, and no comfortable position for your body. There is nothing. It is as if the bones in your body are set ablaze and your skin is sewn up around it. What remains is relearning to tie your shoes, going to the bathroom on your own, dressing yourself, and showering without assistance. The residual from spinal surgery is month’s long bed rest and lying on your back motionless and breathless from pain with cold tears rolling into your ears.
I had my life saved by three practitioners: an occupational therapist, a physical therapist, and an anesthesiologist pain specialist. What sustained my life was fourteen other patients that understood—they were the only ones. For four to six hours in a six week program, I learned about chronic pain. It was the first time in two years that I heard those words. The occupational therapist once told me: “it will never be easy, but I know you will get through this in life.” It was a place of rigorous treatment complete with a large blue binder of exercise and education. It was also of place of recognition and belonging for the first time since my accident. I still take out that now tattered binder with my name laminated on the cover and refer to it, use it, and sometimes just gaze at it as if it were a first edition Great Gatsby. There is no award for piecing your life back together, mostly; there isn’t even recognition that it was ever broken in the first place. But that blue binder is my greatest medal and my largest scholarship.
The day I graduated from the pain program, I changed into a blue dress decorated with white flowers. I hugged my pain tribe goodbye and stopped by the hospital to deliver flowers to a fellow patient who was undergoing testing. I moved to continue a Ph.D. in Political Science and Public Health at a leading university in those fields. On the road again with my sister, spare Percocet in hand, I was picking up where that 22 year old had fallen down. I guess I learned that some things in life are so monumental—old lives are buried changed, marred, and burned—that you can never go back. My heart and life now remained with the disabled, injured, and pained. I moved again but this time forward. I decided to pursue a doctorate in physical therapy. I can’t begin to describe what it is like to have a small part in helping a patient move their legs for the first time or to tell you that your words motivated them to wheel down a hallway with one leg.
It is a lot of work maintaining this new life. I wake up every morning and I take fourteen medications. I perform my physical therapy stretches and I go to class. Upon arriving home, I take more medication and I spend over an hour at the fitness center. I make use of an audio recorder, extended time on quizzes and exams so I can ambulate, accessible classroom furniture, and the use of volunteer note takers during absences due to medical necessity. I study while running transcutaneous electrical nerve stimulation through my muscles. I have to constantly find the time for continued physical therapy and doctor’s appointments and sometimes the juggling results in balls dropped. Sometimes I cancel my appointments just to have an extra hour with that challenging science material. Other times, my body forces me to perform less than perfect. It is a terrible feeling knowing that you could have done better on something if it weren’t for your stubborn and pain-riddled body. These two lives of healer and needing to be healed constantly collide. I receive more than 25 injections of anesthesia into my muscles and the next day I have to wake up, be prompt, and be prepared. I am madly, passionately, head over heels in love with my profession; but, if I could I would still go back and warn that 22 year old. I would take it all away never knowing the joys of what it is like to help a fellow patient move forward in their own life. I would tell her to go lie down.