For Now, I’m Managing my Unpredictable Persistent Sickness With Yoga and Mindfulness
This story is part of our Real Women, Real Stories series, which documents the experiences of women on their health trips. Please always contact your doctor with any personal concerns or questions.
I have limitations. They look like cauliflower.
There. I said it. Denial and avoidance were my best friends and worst enemies.
After living a life blessed with good physical health and good mental health, I developed a poorly understood disease called sarcoid. Unpredictable, variably deactivating and largely untreatable. Traits consistent with our current pandemic.
I’ve wanted to write about my condition for a long time. But when I had the opportunity and plenty of time to stay at home, I couldn’t calm down. It’s one thing to write about something abstract or knowing how it’s going to end. But at the moment nothing is like that, is it?
I focus back on my own little breath from the wide angle universe. I see for myself how I cope with the tiny spot of myself and the tiny cauliflower in my lungs, how my limits unfold.
In my new world, among others, victory could look as simple as expanding my lungs aided by the craziness that Kundalini Yoga is. My lungs are now harboring proliferative non-malignant granulomas that resemble tiny cauliflower flowers. You are always ready to take over any organ system you choose. If they need to be somewhere, the lungs, whose alveoli already look like cauliflower, are probably the best place for them.
It is now my job to keep the granulomas open and closed so air can flow through my body. The Kundalini, with its deep chants and relentless repetitive movements, often makes me feel as though I have painfully surrendered to prisoner-of-war status. But his strange work of breathing sends vibrations to my lungs like a tuning fork.
In the plexiglass cabinet of the pulmonary clinic, where they test my lung function, I pretend I’m in a yoga class. I fill my lungs deeply, hold on longer than I think, dig into my core and imagine the granulomas as tiny balloons that fill with air. Even if my voice falters towards the end of a chant in class, I’ll do it myself. I focus on an inner frequency. When the lung technician tells me to stop, I stop and wait for her nod in agreement.
In my professional life as a psychiatric nurse and addiction specialist, I have attended training courses with pioneers in mind-body medicine, including Dr. Herbert Benson (The Relaxation Response), Dr. Bessel van der Kolk (The body holds the score). and Amy Weintraub (founder of LifeForce Yoga and author of Yoga for Depression).
You have all provided me with research that confirms what I have long known. Traditional Western medicine cannot answer all of our health and wellbeing questions. Long before it was customary, I began incorporating progressive relaxation techniques and guided imagery into my work with patients. In my office now available online, I am introducing the simple “4-Square Breathing” – a quick, simultaneous method of pranayama and distraction to augment the psychotherapy and pharmacology we use.
I “practice what I preach” as my sarcoid specialists are limited. The integration of western medicine and holistic techniques is left to me.
The author practices Kundalini Yoga at home, accompanied by her dog.
After a year of breathless coughing, pulmonology offered me a diagnosis that luckily wasn’t lung cancer. My providers had little else to say: “Let’s meet quarterly to check things out.” They told me the only treatment for sarcoid would be a year with corticosteroids – not a cure, but an improvement in symptoms, with side effects that could be worse than symptoms.
I’m postponing the corticosteroids for the time being for fear of these side effects. For months before my diagnosis, I had experienced a dizzying, falling sensation that was difficult to describe. Cardiology gave me beautiful pictures of a strong and clean heart and assured me that “nothing was my fault”. Further testing confirmed that my heart did not carry the family curse of plugs and plaques, but instead required low doses of drugs that regulate the beat (an electrical fiber is missing in my septum). “Let’s get together annually and keep an eye on this,” said the doctors.
Dermatology punched through a point on my chest that still hurts. Primary care is personable and admits they don’t know much about this disease (but bless them, my PA is willing to learn alongside me). Off to rheumatology, where my aversion to steroids is recognized and my options are discussed.
Recently, a nephrologist on Skype has offered some shameful reminders based on laboratory results that could indicate an increase in granuloma activity:
“It can show up anywhere! Kidneys, heart, brain,” he said. He was less encouraging about my Kundalini practice than my other doctors, whose responses ranged from unbridled enthusiasm to “Well, it can’t hurt.”
The only other person I know with sarcoid just died in their sleep at a young age. In order to.
The days when I most want to avoid doing yoga, the days when fatigue or fear prevents me from doing yoga, are usually the days when I ride the waves of my own divinity. This is a statement I probably would never have made a year ago.
But now I am lying in Savasana, the rest period after Kundalini training, and I am worried that someone will see the cleansing tears run down my cheeks. Another time, when I’m lying on my mat amid swarming thoughts, something important – maybe the structure for an essay or an idea for a sound collage that I’m struggling with – will jump out of the chaos.
“Let’s go,” whispers a voice not dissimilar to mine.
Yes, I want to feel my breath becoming easy. Yeah, I want to go so fast that I make wind against my face. But maybe the best I can do now is to listen to my teachers. When they say “surrender”, I surrender to the essence of my being – full of limitations, cauliflower and balloons. And one day surrender may mean the drugs.
Nina Gaby is a writer, visual artist, and advanced nurse who specializes in addiction and psychiatry. She has worked with words, sounds and people for five decades. Her essays, fiction, prose poetry and articles have been widely published, most recently on the NPR blog “New Normal”, Psychiatric Times, The Rumpus, McSweeney’s and Brevity. www.ninagaby.com