Karma Bears Fruit
I stood beneath the warm water of the shower shaking with fatigue. Neon lights shimmered in my brain—cyan, magenta, yellow, black—a visual migraine triggered by sunlight filtering through the small window. It added a carnivalesque flavor to the already surreal. In the span of a few weeks, showering had become a grueling ordeal.
Washing my hair was an astonishing effort, the weight of my trembling arms unimaginably heavy. The fragrance of the shampoo, a subtle scent that a few months previously went unnoticed, landed like a punch to the head intensifying my tremors.
Stepping unsteadily from the bathtub, my heart skipped and fluttered, raced and staggered beneath my breast in a wild arrhythmic cadence. I sat down on the closed lid of the toilet seat naked and still wet, catching my breath, gathering strength to towel off and dress.
“You’re very interesting,” my new cardiologist had greeted me two days previously, shaking my hand with genuine delight. “Look here,” he riffled through a large stack of papers, the printout of a 24-hour Holter ECG. “I’ve never seen anything like it,” he was not a young man. “There’s not one normal rhythm. Not one. You have some pretty rare arrhythmias,” he said smiling broadly. His obvious enthusiasm had not been reassuring.
I no longer recognized my life.
After another night of little sleep I faced another day on the couch. Resting. Rest offering no relief from the peculiar purgatory I’d stumbled into. Unable to work, I’d already spent two months on the sofa.
The days and nights bled into each other. Both were interminable. I couldn’t read, I couldn’t even watch television. Light, noise, movement, the flickering of a screen—all of it hurt, made my head spin, left me exhausted. Every muscle and joint burned and ached as if I’d hiked 18 miles carrying a 40 pound pack and was awash in lactic acid. My brain was a scrambled mess. I couldn’t concentrate, recall simple words, make even the most basic decision. I was terrified.
Inexplicably, maddeningly all of my lab work was normal. On paper there was nothing wrong. It was mere coincidence, the poor timing of bad luck, that the electrical system of my heart should fail along with everything else. So I was told.
Test after test came back negative. Finally, with every possible disease eliminated I was diagnosed with that mysterious catch-all: chronic fatigue syndrome, a.k.a. myalgic encephalomyelitis—ME/CFS for short. It was autumn 2004.
The subsequent years were a rollercoaster punctuated by acute illness episodes and months-long recoveries. Each period of remission left me at a significantly lower level of functioning. I lived in constant fear of losing my job and ending up disabled.
During a flareup in 2008 I tested positive for Lyme disease. I consulted with three specialists, spent two years on antibiotics, thousands of dollars on supplements and intravenous therapies and ended up sicker.
By 2010 my worst fears had materialized—I could no longer work and applied for disability. Unable to afford rent I gave up my apartment left Seattle and moved in with my parents.
Still seeking answers, the following year I travelled back east to see an expert on biotoxin illness. After more exhaustive lab work I received a third diagnosis: chronic inflammatory response syndrome (CIRS) resulting from exposure to toxic mold. I undertook another year of treatment with no success. And still my health declined.
Eventually I needed a chore service provider to help with cooking, cleaning, laundry—all the things I could no longer managed. My mother did the grocery shopping and prepared meals. I spent a lot of time in bed. On a good day I would walk outdoors in the backyard, perhaps 60-100 feet. Otherwise, except for routine medical appointments, I didn’t leave the house and on those rare occasions I needed a wheelchair. My cognitive functioning deteriorated. Once again, as in the first months of illness, I could no longer read a book, watch television or listen to music. Writing a coherent sentence was difficult. I couldn’t drive. While the symptoms were not as acute, the years had taken a toll. This time there was no remission.
Nothing Left to Lose
Fifteen years passed. I rapidly went from a vibrant woman of 44 to an old woman; it had little to do with the passage of time. Much of it is now an indistinguishable blur. There were years of suicidal depression. Along with my health I lost my job and home, my financial independence and savings. I lost my community and many of my friends. During a particularly low point that spanned 2010-11, I went through a difficult withdrawal from a prescription drug.
I grieved. I had a lot of anger. Through it all—all of it—I meditated daily.
If heart failure was an urgent wakeup call, fifteen years of ME/CFS was a slow honing process. Where heart failure left me nakedly vulnerable, ME/CFS was a flaying that stripped me to the bone. It was in some sense the practice and integration of what I’d learned when I first confronted death. How did I get through those years? One moment at a time. Once again, I learned to let go—of all I’d hoped for in my life, of wanting things to be other than how they were. I let go of everything.
And slowly, slowly I found peace. The acceptance that was nearly instantaneous with heart failure, was hard won with ME/CFS and it arrived as a blessing. When I finally accepted my life just as it was, illness no longer mattered. Instead, and surprisingly, I found reasons to be happy. I laughed. I took joy in simple things: watching birds at the feeder, communing with a slug as it devoured the petals of a flower, the sound of rain outside my window. I learned to appreciate all that I had rather than focus on what I’d lost.
An Improbably Recovery
On the second day of January in 2019, a family member passed me a post-it note with “dynamic neural retraining system” scrawled across it. “You might want to check this out,” he said.
I went to my computer and found myself on a website where I read about limbic system impairment and how it sets the stage for chronic illness. The DNRS program, founded by Annie Hopper and based on her personal experience, uses the novel approach of retraining and rewiring the brain’s limbic system to facilitate recovery from a variety of debilitating conditions.
According to what I read, my limbic system had become cross-wired reacting to ordinary stimuli—physical exertion, fragrances, household chemicals, foods, and more—as if they were life-threatening. My autonomic nervous system was virtually locked in a constant state of emergency impacting my endocrine and immune systems and diverting resources away from digestion, and processes of repair and regeneration, making recovery impossible. Nearly every physiological function of my body had in a sense been hijacked and distorted by a maladaptive limbic system—a brain stuck in fight or flight.
On January 4 I downloaded and began the four-day online seminar. I was so sick it took me two weeks to go through all the information. Finally, on January 17 I started the program. I had my key to recovery. At six months, and with the help of physical therapy, I was able to walk half a block. I put my wheelchair away in the garage never to be used again. To celebrate I went to a hair salon for the first time in a decade and had my hair professionally cut—by then my multiple chemical sensitivity was nearly gone.
After one year I could walk half a mile, drive, grocery shop, cook, do laundry, push a vacuum cleaner—read a book. I no longer had irritable bowel syndrome and could eat whatever I wanted. By month eighteen my limbic system had fully recovered and I could walk a mile. Regaining the muscle, strength and stamina I’d lost would take more time yet but compared with all I’d been through, that was easy.
My story of recovery can be found on the DNRS website.
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