Evolution of a mouldy head

Evolution of a mouldy head

by Thelma Fayle

I held Nations in Darkness close to my face and smelled the molasses-like ooze on the cover of my damp old book. I wondered what it was. I felt sick to my stomach within five minutes; but didn't connect the two events. I thought I was coming down with the flu. Within 24 hours I was in Emergency on a ventilator and heart monitor.

Eighteen years and a million sneezes later (always more than 100 a day); I no longer have a sense of smell or taste and usually sound like I have a bad cold.

Everyday, when I perform one of my loud and bountiful public sneezes, well-intentioned strangers in the bank or the library or the grocery store, look at me kindly, with big smiles and call out: "Bless You Dear" or "Gesundheit." One Russian woman seems to sing: "Please be healthy."

I am pretty sure I am one of the most blessed people on the planet.

If I don't hustle along, they frequently slip into offering well-intentioned advice. "Oh my, that cold sounds nasty. Have you tried Redoxin?" "I had that sinus problem, oil of oregano will fix you up." One waitress counseled: "You should eat raw garlic sandwiches." I could write a book about all of the sinus remedies offered by strangers in the spirit of compassion – not to mention all of the costly alternative therapies I have tried.

When people chatter on about smells and tastes of foods as people often do, I nod my head and silently pretend they are crazy. I sometimes tease my friends about being 'taste dependant' creatures. In my world, coffee shops don't smell like coffee anymore, and bakeries don't smell like bread either. They don't smell like anything. I can barely remember what lemon-pie or scalloped potatoes or Chivas scotch tasted like, even though, long ago, I loved them all.  Now I enjoy food based on how it makes me feel.  I could probably live on oatmeal. That stuff makes you feel great.

So does Daryl's cooking. My partner makes me luxuriously satisfying meals of texture and colour – densely packed with real TLC.

My Lily Tomlin-like nasally voice keeps getting richer. My nose suddenly runs without any warning. It's a constant source of embarrassment, as are my hankies. Even the word hanky grosses most people out. But when you have to blow your nose dozens of times a day, Kleenex tears your face. Those old-fashioned cotton handkerchiefs can be a soothing white flag. I have been tempted to make a joke about handkerchiefs being fashionably 'green'; but I am not sure I could pull it off.  

The hospital lab discovered that my infection began as a weird mould – or to be more precise: paecilomyces lilacinus penysyllium. After almost two decades, I can even spell that now.

Dr. Javer, my surgeon in Vancouver, also known as one of the finest specialists in North America in dealing with this particular sinus disease, kindly and gently advised me to "develop a good attitude". He cautions me that as sophisticated as it has become in the last decades, sinus surgery may only give me a short reprieve. He said the mould in my head is tenacious.

Or as one funny specialist put it: "mould loves dark damp places and there isn't a darker damper place than the middle of your head." I am pretty sure he meant anybody's head, not just mine in particular; although my family might argue that point.

After 25 years as a systems analyst, I stopped working; grateful for a compassionate boss. The Canada Pension Plan advisor urged me to "stay connected." Apparently a lot of people with chronic illnesses become isolated. I took her advice and volunteered one afternoon a week for six years as a foot-rubber at Victoria Hospice. Offering comfort-care to others is a salve for my mouldy head.

Years of difficulty breathing, along with too many frightening Emergency visits has helped me appreciate what's important. Yes, friends and family. A simple walk by the sea, too, with my thermos in hand. Tea-by-the-sea is still wonderful even if I can't smell the salty air anymore. I have been given abundant gifts of time and freedom in the unexpected wrapping of chronic illness.

A positive attitude, strict diet, no alcohol, almost no sugar, 9 hours of sleep a night, and most important of all: daily infrared saunas that feel like a life-saving half-hour visit to Arizona – all help me to breathe easier. So I don't get rushed to the hospital anymore, like in the early days.

But here's the paradox: If I didn't manage the disease so well, and if I visited the ER more often as a result; I would likely be fast-tracked for sinus surgery that would enable me to fly again and might even help me temporarily regain my senses of smell and taste.  

Our precious medical system is pressured.  

Nations in Darkness by John Stoessinger was my favourite book when I studied political science at Dawson College 40 years ago. His broad view of international relations encouraged me to try to look at political and personal events from as many perspectives as possible. Inhaling a rare mould from the cover of his book taught me that lesson in more ways than he ever could have imagined! 

The one-time, less-than-five-minute exposure to a strange molasses-like substance was the event that stalled my once-active life.

But oddly enough, I grew from the experience. If only, from the train trips across Canada in different seasons over nearly two decades. I would never have so closely observed and come to appreciate our wild, Canadian geography had I been able to fly.  And I would never have spent hefty amounts of time with cherished, now-deceased elder friends and family members.

I can't honestly say I'm sorry I got sick. But I do miss the smell of the sea.

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