I am like the canary in the coal mine
I was a sick kid. I had food allergies, stomach issues, asthma, and anxiety since I was about six years old. The doctors dismissed me as one of those weak baby birds, who is simply more susceptible to illness. By age ten I was bedridden for a month with strep throat which was complicated by the addition of pneumonia, and a strange contorted posture. My head dipped to the right as my shoulders slanted to the left. I was unable to stand up straight and correct my posture, so the doctor recommended my mother take me to a chiropractor who did manual manipulation of my neck, shoulders and spine, and also put me in traction. While I have no memory of these sessions, my mother told me years later that she could hear me screaming and crying out in pain from the waiting room.
My health waxed and waned over the years. Strep throat, pneumonia, mono, carpal tunnel syndrome, neck and back pain, asthma, flus, and viruses plagued me, but I also had extended periods of good health. Because ofthis it was easy to not take my health issues seriously. Whatever I was experiencing was “just a bug” and would pass.
After college I had a hard time keeping a job. Strange and sudden symptoms would creep up as I became busy or moderately stressed; muscle weakness, dizziness, blurred vision, memory issues, migraines, light/sound sensitivity, alcohol intolerance, heat/cold intolerance, loss of sense of direction, attention issues, anxiety, upset stomach, painful joints that would crack and pop, and heart palpitations so loud that my family could audibly hear them. I saw many caring (and many not-so-caring) doctors who simply thought I was overworked. When my symptoms progressed to loss of muscle control, fainting, and consistent tachycardia, they began to take me seriously. I was referred to a cardiologist, an ENT, and an ophthalmologist. After many appointments, EKG’s, Holter monitors, and echocardiograms I was told that I was “in excellent health” despite being diagnosed with tachycardia, chronic ocular migraines, chemical sensitivities, and laryngopharyngeal reflux. So I was referred to therapists. If my ailments weren’t showing up in any of the tests, surely it had to be psychological. The therapists reiterated that I was doing too much and that I needed to slow down, despite working a reasonable amount of hours (30-35 hours a week) at a job I would consider relatively low-stress. They diagnosed me with anxiety and depression, yet oddly enough I didn’t feel anxious or depressed. I felt like a person who was sad to be sick and was scared to not be finding help.
After a year of marriage, my symptoms progressed to the point where I had to leave yet another job. Most of that time I felt as if I was delirious from a terrible fever that would not lift. My husband tells me stories of me being incoherent, drenched in sweat, losing muscle control, crying and hallucinating, but I remember almost none of it. I lived this way, mostly bed-ridden, for a year and a half.
Somehow I recovered. I changed my diet, began walking, which lead to running, which lead to yoga. I graduated three yoga teacher training programs and taught yoga regularly for a handful of years. Things seemed to be falling into place. I had found my calling, I was in the best shape of my life, and my health issues mysteriously and miraculously vanished. I had a nice following at my studio, lots of private lessons, and other studios requested me based on student recommendations. Life was simple and good, and I was very, very happy.
In addition to yoga, I also cared for my grandfather who has Alzheimer’s disease. Granted this is a hefty burden for anyone to bear but my mother, my aunt, and myself shared the responsibility. Plus my volunteering was a reflection of how good I was feeling at the time. Sure enough, after a year and a half my adrenals had burned out. I became fuzzy and tongue-tied while in class, mixing up my left and my right, running out of breath, and often losing my vision completely upon rising. One day I was walking down the stairs when my legs went out from under me. I tried to stand, took a few paces and collapsed again. After a six hour trip to the ER warranting no results I resigned from my duties as caregiver and yoga teacher to focus on my own self-care and to find a doctor who could tell me what was wrong.
Finally I found two Lyme-literate doctors who both diagnosed me with Late Stage Lyme Disease and co- infections. I began antibiotic therapy and had to stop teaching yoga, making art, reading/writing, spending time with loved ones; all of the things that helped to define me and fuel my soul. I became very ill, unable to feed or bathe myself most days. Walking and breathing became my greatest challenges. I dropped down to 98 pounds and was bedridden for 6 months. My spirit was nearly crushed.
I have been in treatment for nearly a year now. I no longer suffer as I did in the beginning. Now my life is more about managing symptoms. The long-term antibiotic and holistic therapies are giving me my life back. Every miserable moment of recovery has been challenging and yet validating, enlightening and character-building. I have had to summon the teachings of yoga from the deepest recesses of my being. I’ve drawn self-reliance, inspiration, and faith from the driest of wells. Good days are an opportunity to rally, to gather forces, and to invest in one’s own happiness. I know my experience with Lyme will fuel my creative process as I begin making art again.
I now recognize that I am like the canary in the coal mine. It is a gift to have such sensitivity. I feel such a sense of deep gratitude for the clarity and wisdom that has come from the darkness. Recently I cut my long red hair, and while most think it’s because short hair is easier to care for, the truth is that it’s better for battle. This warrior is ready, and will continue to fight.