My Mother, My Disease, and Me

Doctors told me cystic fibrosis would kill me by age 15. My mom told me I just had allergies. After a childhood of Ayurvedic treatments, I've embraced Western medicine as an adult, without abandoning my alternative roots.

The author and her mother (Courtesy of Christine Schrum)

In my memory, I am 11 years old, lying on a massage table in a dimly lit room. Two  women are rubbing herbalized oil into my skin. At first, I’m a little insecure about my bony ribs and chest, but as the women’s hands sweep across my body, I settle into a state of deep relaxation.

I’m at an Ayurvedic spa—the first of its kind in Northern Ontario in the 1980s. This is decades before yoga and Lululemon will become household terms throughout North America. My mother has learned about Ayurveda, an ancient healthcare system from India, and has driven me through several hours of January snow to a spa in Huntsville, Ontario, where she hopes the words cystic fibrosis will be abolished from our vocabulary.

I was first diagnosed with the fatal lung disease when I was just a few months old. I’d been a healthy, hefty 10.2 pounds at birth, but the weight gradually whittled away as I failed to thrive on Mom’s breast milk and developed a croupy whooping cough. By sheer coincidence, her best friend, Gloria, happened to catch a TV program on babies with cystic fibrosis. She immediately called my mother and told her to lick my forehead to see if it tasted salty. It did. That was my first CF diagnosis, albeit an informal one.

The official label came not long after, from doctors at the Hospital for Sick Children in Toronto, Ontario, where I would spend the next several weeks being evaluated, to my mother’s great distress. Tests revealed that, yes, I did have high sodium content in my sweat, one of the top indicators of cystic fibrosis in the 1970s. My family history was another tipoff; my father’s younger brother, Kay, had died of the disease at age 12. (Later in life, genetic testing that wasn't available when I was a child revealed that I have only one copy of the dreaded delta-F508 gene mutation, instead of the two my uncle almost certainly had. I also have a mutation called the R117H, and this combination can cause widely varying degrees of CF manifestation.)

In the hospital I rejected the prescribed pablum, despite my mother marching from the parents’ quarters several times a night to feed me. The doctors’ diagnosis was spot-on, and they did everything in their power to save me, but back then hospitals just didn’t have the excellent resources they do today for kids with CF. I continued growing smaller and paler each day.

So one crisp, sunny spring morning, my mother bundled me up and carried me out for good, threats from my doctor ringing in her ears: “If you don’t bring that baby back for a check-up soon, I’ll send child services!”

Looking back, it was definitely a risky thing to have done, and it’s certainly not something I’d advise any other parent of a CF baby to do. But this was the 1970s, and the simple reality is that there really wasn’t much they could do for a wheezing newborn who was refusing her formula.

Back home in Sudbury, Ontario, Mom devised various watery concoctions of mashed brown rice, avocado, bananas, and lentils based on Diet for a Small Planet readings. I gobbled them up, gained weight, and, for whatever reason, lost the cough. Several months later, we visited my doctor, who was immensely relieved. And so began Mom’s and my long quest together: my good health, our eternal Holy Grail.

“You don’t have cystic fibrosis,” she would say with a dismissive wave as I coughed and wheezed my way through a happy, active childhood. “It’s just allergies.”

Because she was Mom and knew everything, I believed her and ran full-tilt through my days, swinging from trees in the summer and winning cross-country skiing races in the winter, stopping only to pop antihistamines, blow my nose, or take a much-needed hit of my rescue puffer.

But despite Mom’s seeming bravado, there was a crack in the fortress; she monitored my symptoms with the vigilance of a soldier on night watch, constantly alert for the enemy. She kept a watchful eye on my bathroom habits, rushing in to ensure I was absorbing my food. Each night, she’d press her ear to my chest to ensure I hadn’t developed a serious rattle.

When, at age 10, I developed a bad cough again after a summer trip to England, she grudgingly brought me to a CF specialist. The woman reconfirmed the diagnosis and gave me a life expectancy of age 15.

“That woman doesn’t know her head from her ass!” my mother said to me in the hallway moments later, eyes flashing. Then she twirled her finger in the air by her ear, to indicate, “What a loonie!”

I giggled and felt relieved. Mom and I had a secret and seemed to know what the well-intentioned doctors didn’t: There was nothing seriously wrong with my health.

* * *

Ironically, Mom was a registered nurse, but although she worked long hours in the local hospital, she did everything in her power to ensure I never stepped foot there, beyond regular check-ups. We tried everything from homeopathy to reflexology, and in the end, it was Ayurveda that seemed to yield the most positive results.

Ayurveda, which means “the science of life” in Sanskrit, employs herbal supplements, dietary recommendations, and hands-on treatments to treat and prevent illnesses. My best friend, Stacey, grew accustomed to seeing me take daily breaks from our invented dance routines to inhale the soothing steam of eucalyptus, camphor, and menthol. After, I’d lie on the couch, head tilted back, and inhale herbalized sesame oil that Mom squeezed into my nostrils from a dropper. It was a big messy hassle and I had to be coaxed to participate, but I always breathed much easier afterward.

The herbal remedies were just the beginning. We also took trips to the Ayurvedic spa in Huntsville for weeklong, in-residence cleanse programs called panchakarma. These stays involved warm oil massages (abhyanga), along with herbalized steam baths (swedana) and other treatments.

I remember shying away from something called netra tarpana, in which you lie on your back as a soft circle of dough is placed around your eye socket and warm ghee, clarified butter, is gently poured in. Then you open your eyes and look around, as the oil, theoretically, removes impurities.

“It’s like swimming in gold!” my mother enthused.

Naturally, I wasn’t about to miss out. I lay on my back and blinked into the warm oil, imagining myself diving deep into a golden stream that could cure my cough.

“You always seemed to shine and glow after your panchakarma treatments,” my father recalls. Mind you, this is Dad the skeptic. Dad with the Ph.D. in physics, Dad who needs hard and fast evidence to be convinced of anything.

He and Mom split when my sister, Janet, and I were little, but he is a wonderfully supportive father and always bankrolled our Ayurvedic adventures.

* * *

When I was 14, my mother, sister, and I moved to Fairfield, Iowa, a town of 10,000 where 3,000 people practice transcendental meditation with earnest hopes of creating “heaven on earth.” In Fairfield, I regularly saw vaidyas, practitioners of Ayurvedic medicine who made dietary or herbal recommendations. Sometimes they were visiting experts from India accompanied by a medical doctor, and other times they were themselves American M.D.s who had set aside lucrative mainstream medical careers to prescribe herbs instead of pills. That’s not to say they countermanded any traditional allopathic advice, or shied away from prescribing things like Tylenol Sinus or antibiotics. But if a paste of honey and turmeric could clear up my congestion, or simple herbs could improve my digestion, that’s what they’d recommend.

For most of high school, I rarely needed my puffer or antihistamines, and my mother beamed with pride at the healthy, happy teenager I had become. I joined the volleyball team and raced around the court with ease. My cough seemed to have disappeared entirely.

In 1990, when I was 16, Deepak Chopra published a book called Perfect Health, with the help of some of the Ayurvedic doctors I’d seen in Fairfield. It was and is a very accessible book about Ayurveda, and someday, I thought, I would write a book of my own. Legions of formerly sickly CF children would be healed, and I would appear on Oprah to share my tale and possibly claim a Nobel Prize.

But then, somewhere around age 18, perfect health began to elude me again. I developed severe nasal polyps and my Ayurvedic M.D. referred me to a specialist, who prescribed corticosteroids. It might have been due to Iowa’s high pollen count or the airborne pollutants from the state’s increasingly encroaching factory farms. Then again, maybe it was just that darn CF kicking in again.

“It’s not CF, it’s allergies,” my mother repeated her mantra, even as I went in for the sinus operation. I wanted to believe her, but as I vomited up blood in the recovery room, I started to wonder why, in fact, my “allergies” were this severe and how come I often felt exhausted compared to my friends, despite the fact that many of them stayed up late while I religiously observed the Ayurvedic bedtime of 10 p.m.

I began to see my health issues as something I was somehow creating in myself, or at least, failing to un-create. My mother so fervently believed that I wasn’t ill, I felt that I was somehow letting us both down. Not because she was unkind about it or unsupportive in any way—quite the opposite—but because of her flat-out refusal to accept the possibility that I might have a chronic condition.

And then there were my peers. Well-meaning friends would chirp things like, “I guess it’s just some karma you have to work through!” Perhaps they meant to say, “I’m sorry you’re not feeling well. It doesn’t seem fair!” but what I heard was, “You messed up somewhere along the line, and now you’re paying for your mistakes!”

I carried this sense of shame throughout my 20s and early 30s, secretly feeling that if I could just find the right combination of herbs and diet, or somehow be a good enough person to break my bad karma, I might, finally, attain the good health that seemed to be everyone else’s birthright.

On my 36th birthday, as I celebrated with friends, I blew out the candle on a creamy slice of tiramisu to great applause, not realizing I had walking pneumonia.

* * *

Against my mother’s wishes, I’d been doing weekly allergy shots for six months: “You start going to the hospital, you’re going to keep going to the hospital,” she had warned, her eyes welling with tears.

To her surprise, the first few months of shots had gone beautifully. I’d sailed through Iowa’s brutal hayfever season without the usual horrific wheezing, sneezing, and bloodshot eyes. I felt like I had a new lease on life and wanted to kiss my allergist’s feet.

But somewhere around Thanksgiving, I developed that croupy cough again. Several rounds of penicillin later, I couldn’t sleep at night for my chest filling with fluid. I stopped the allergy shots, but the symptoms persisted. None of my Ayurvedic teas or tinctures—or the prescriptions from my primary-care physician—seemed to make much difference.

I couldn’t tell what had caused such a dramatic slide: whether it was the allergy shots, the Iowa air, or simply some stacked genetic dominoes that had toppled down in a rush of inevitability. Perhaps it was a combination of all three. In any case, by summertime, I was coughing up blood.

Not having U.S. health insurance, I moved home to Canada, where specialists once again reaffirmed my CF diagnosis and began providing me with ongoing medical care. It’s been nearly four years now and the excellent CF clinics here have largely gotten me back on my feet, though I did lose volume in one lung and sustained permanent bronchial damage. I also seem to have entered a New World Order of sorts. I now suffer frequent lung infections that can require bottles of antibiotics the size of my forearm to quell. I inhale steroids every day just to breathe. During bad spells, I go on prednisone.

But, for a woman with CF—and nearing 40 at that—I’m enviably healthy. I don’t require nebulizers, therapy vests, or daily handfuls of pills, and I haven’t yet (knock on wood) had my first hospital stay with IV antibiotics. I’m nowhere near needing a double-lung transplant, and unlike my late Uncle Kay, I’ve made it well into adulthood. I hop on my bike regularly to head to this dance class or that yoga studio, my legs pumping hard, my lungs filling with sweet, precious air. I’m lucky and I know it.

I’m grateful to have been born with two relatively mild mutations of the CF gene, a hereditary twist that, so far, has helped spare me from even more harrowing symptoms. I’m grateful for my allopathic doctors, who empower me with options for diet, medication, and physiotherapy. I’m equally grateful to my dear, feisty little mother, who died of a heart attack a year and a half ago, just after bringing me a brand new bag of Ayurvedic supplements to try. “Take good care of your bod, honey,” she said, with a reassuring hug. Looking back, I realize it was her graceful way of handing over our decades-long project. My health is now entirely in my own hands.

I still rely on Ayurveda to balance my symptoms and the inevitable side effects of Western medications. In fact, I’ve come to see allopathy and Ayurveda not as two disparate systems but, rather, two aspects of a single, multifaceted approach that helps keep me alive. These days, my CF doctors themselves recommend saline sinus rinses that are similar to the neti pots used for thousands of years by Ayurvedic doctors.

I’m happy to say I no longer blame myself for living with chronic illness. My yoga teachers where I live now in Victoria, British Columbia, have helped. They say things like, “No matter how you’re feeling today, no matter what you’re dealing with, you’re fine, just as you are.”

I still meditate regularly and find it as relaxing as a long, hot bath with lavender and candles. Most doctors would agree that’s a good thing; stress exacerbates any illness, and hundreds of peer-reviewed studies have found that meditation measurably reduces stress levels. But I’ve let go of any notion of perfection—in my health, myself, the world I inhabit—and I find that makes life’s challenges a lot easier to bear.