Lost and Found
“I’d like to come to the CF education day you told me about,” I say to Susan, the cystic fibrosis (CF) clinic coordinator at Royal Jubilee Hospital over the phone. It’s 1999 and I’m in Victoria, BC. I’m twenty-eight years old.
“Great,” Susan says. She has a way about her. Matter of fact but kind. I like her very much already. She gave me a tour of the clinic and hospital a few weeks ago when I moved here with my husband from Ontario. “We’d love to have you. I’ll sign you up.”
Every CF clinic I’ve attended since I was diagnosed at six years old—from Sudbury, to Victoria, to Toronto—feels the same in many ways. I have access to an expert CF doctor, specialized nurses, a dietitian, physiotherapist, and social worker. Attending CF clinic involves a long day four times a year. I run around the hospital: blood tests, X-rays, spirometry to test my lung function, and bone density scans to check that my bones are okay since my CF body doesn’t absorb calcium very well. Then I sit and discuss the results with the doctor. They ask the same questions year after year.
How often do you cough, how much do you cough up, what colour is it, do you still have private insurance?
The thing that sets each clinic apart is the staff. I can tell that this clinic will be a favourite. Susan has already said that education day will be good for me.
I think she’s spot on. I do need something.
Victoria, with its perennial blooms and rugged coastline, is spectacularly beautiful. The ocean waves are magical. The fact that even the gas stations come landscaped with azaleas and rhododendrons is fantastic.
Despite this beauty, I am out of sync in this new city of mine. The smells, the turns in the roads, the shops and their shelves—they are not my own. It takes months for me to remember that the Earl Grey sits between the Misty Morning and Raspberry Zinger teas at the grocery store, on a shelf that is under the instant coffee and above the filters.
My secretarial job at the accounting company is lonely. It seems like everyone’s lives are all set. No room for the new girl. I watch the clock all day. The writer’s group I tried a few weeks ago wasn’t for me. I can’t catch the beat of other people’s rhythm.
So, I figure I’ll give this education day a shot. What have I got to lose?
*
“Welcome to CF education day everyone!” Susan makes eye contact with all of us. We are twelve people seated in a circle in a small conference room at the hospital. Our chairs are six feet apart and we all wear masks. This is so those of us with CF don’t cross-contaminate each other with the bacteria in our lungs.
We’re asked to introduce ourselves. There are a few CF adults here, alongside parents and spouses of people with CF. The CF clinic team members are in the room as well.
The physiotherapist stands up and introduces himself. I’m meeting with him in a couple of weeks to review my own regime. The old days of laying on a postural drainage board or using a loud compressor to move phlegm out of the lungs are coming to an end for a lot of people. There are devices that have more to do with air resistance and are compact. I can use them while seated, after inhaling antibiotics through a mask for twenty minutes. It’s time to start doing something for my lungs. At my initial tour of the clinic, the physiotherapist mentioned that he’ll show me how to do things properly and set me up with a device called a PEP (positive expiratory pressure) mask.
Today’s first lecture from the physiotherapist is about the importance of exercise. Cardio is essential for my lungs to stay strong. With the cardio comes a lot of purposeful coughing that clears the airways. I haven’t been very active since high school gymnastics, but I’ve always dreamed about being a runner. Maybe I’ll see if there’s a gym by my apartment where I can get on a treadmill.
In the next lecture we learn about the latest and greatest medications for CFers. I should probably ask the CF doctor about updating my medication regime since I haven’t really looked at that in a while.
After a break for coffee and donuts, Susan stands in front of a flip chart and picks up a large green marker.
“Now I’d like us to make a list; I want us to talk about loss. We know that having a chronic illness comes with many challenges. We also know that to talk about them can sometimes help us know that we’re not alone.” She flips the “CF Education Day” sheet over to reveal an empty page.
“Let’s talk about some of the losses you experience because of CF and declining health. Anyone can answer this, even if you don’t have CF. There are no wrong answers. What are some losses you’ve experienced?”
I look around the room, ready to hear what others have to say.
My gaze is fixed on a young woman wearing oxygen, sitting next to her mom. She’s probably eighteen or nineteen years old.
I saw her come into the room after me, with her oxygen tank slung across her shoulder. Her hair is black and limp and shiny with gel. It highlights her pale cadaver-like skin, which highlights her bulbous fingertips. Despite her mask, I can see that her face is caked with makeup. Her eyes are lined heavily in black; they are hollow and deep-set.
I wonder if she’s a patient, just down from the heart and lung floor where she’s been admitted. Or did she leave her house to be here, with the oxygen tube in her nose and the oxygen purse at her side? How can she stand to wear such obvious signs of sickness and dependence?
I scold myself: oxygen isn’t an accessory, it’s a necessity.
Next to her is a twenty-something man. He is also pale, and his shoulders hunched, but his breathing seems normal, from what I can see.
“I lost my job last week. I’ve had too many sick days. They didn’t say that out loud, but I know,” he shares. “Besides, I used to work at the plastics factory. There was too much standing. I couldn’t take it.”
Susan writes loss of job, loss of income on her flipchart.
“My friends are tired of me cancelling all the time,” says someone named Brenda who looks to be in her mid-twenties. “But sometimes I just don’t have the energy at the last minute. I know it pisses them off.”
Susan writes loss of friends.
“I doubt I’ll ever have kids. It’s pretty risky for me,” says a girl in her late teens.
Susan writes inability to have children.
“I wanted to go to university. I started some courses but then got admitted to the hospital, so I had to stop.” This comes from the young woman wearing the oxygen and make-up. “It’s going to take me twenty years to finish my degree at this rate.”
Susan writes no education, loss of career or loss of career prospects.
“Of course, I have accepted that I won’t have grandchildren,” Oxygen-girl’s mom says. “That’s okay. We’ll have lots of fur grandbabies!”
A few of us chuckle and nod.
Susan writes no grandchildren, no legacy.
“You know what I hate? The loss of privacy; I mean, where else do you talk about your poops so much?” says the guy who spoke first. We all laugh and nod.
Susan writes loss of privacy, dignity.
I look around the room.
These chronically ill people have been through so much already.
What do I know about loss? I have an education, a job, a husband. I’ve never been that sick. I just came from a cross-country trip where I stopped to ride my bike in the Rockies, made a snow angel in Banff, and enjoyed free drinks in Vegas.
I have the urge to say something. I think maybe it’s worth mentioning to this crowd of people—these people who get it. Maybe this way they’ll know that I’m a little bit like them. I rub my hands on the tops of my thighs. My breath gets faster. I feel the words working their way up to my throat. My eyes begin to water and, surprisingly, I burst into tears as I speak.
“I’m afraid of the losses to come. I’m afraid of the future and how my CF will get worse. How will I handle that?”
All of these losses that everyone speaks about will probably be mine someday. There they are, in front of me, written in bold capital letters in bright green marker, and laid out on that board. This is my future. This is just how chronic diseases work when there’s no cure. Some day, my CF will take a turn. It will rot my lungs when it chooses, invite bacteria in at any moment and take my breath away.
I’ve thought about dying, and getting sick, but not about the practical stuff that might happen in the years to come. Who will hire you when you’re sick? Who will stay married to you if you can’t do anything or go anywhere? Who takes care of your pets or kids when you’re in the hospital? Who wants to hang out with you when you’re sad and have no energy?
I will lose everything.
Susan writes fear of the future with CF.
She gives me a sympathetic smile. The mom of the girl who dropped out of university rubs my back and hands me a tissue.
“Don’t worry, you’ll figure it out.” Oxygen-girl flips her hand up to her face and points to the tube in her nose. “You’ll just handle shit. Look at me.”
Again, there is laughter and nodding.
“Thank you,” I say, and I smile.
Susan moves the last sheet on the flipchart to the blackboard and tapes it up to the wall.
“Thanks, everyone, I know that was a hard thing to talk about. Ani the social worker is here if you need to talk to her. We’re going to take a break. Enjoy some treats and some coffee if you like,” Susan points to the table in the corner.
I make my way to the front, to thank Susan for hosting the event.
“Are you okay, sweetie?” she asks.
“I think so. Yeah, I don’t know what happened.”
“Well, that list is overwhelming, I get it.”
“Yeah, but I’ll be okay. I’ll just have to make a plan. That’s what I do. Make a plan.”
“Sounds good. Make sure that plan includes clinic next week!”
“For sure. I’ll see you then.”
There is a rhythm here that I can catch. I know I have much to discover, still. But at least I’m heading in the right direction. I look around the room one last time. Fear of the future remains alone on a page taped to the blackboard.
I am drained, but relieved to have found this community.
*
On that day when I spoke the words “I am afraid of my future with CF,” I felt like I belonged to the CF community. Despite my good health, I too was worried about getting sick. I too would suffer a laundry list of losses, eventually. I saw myself as one of them: those CFers who walk a tightrope of hope and anger, perseverance, and acceptance. Those CFers who know about looking forward with trepidation and longing. It’s an ever-bumpy ride in a swirling river. Dodge this, dodge that. Focus on what’s next and swerve to avoid the danger of infection, hospitalization, lost lung function.
That day, I knew I could no longer pretend that it was okay that people suffered so much with this disease.
Decades later, even with life-saving drugs and treatments at hand, the fear of the future and what CF will deliver never goes away. Even with miracle drugs, we still wait with dread for the infection that will end it all.
The more we gain from the miracles, the more we have to lose.
To stay ‘in the moment’ is a hard skill to conquer for most of us. Add CF to the recipe and it’s nearly impossible.
But I try.
When joy and happiness come, I sit with them. I welcome them for tea.
“Have a seat,” I tell them. “Stay awhile.”
At the age of fifty-two, my husband and I travelled to Costa Rica. I sat on the back deck of our bungalow in the rainforest and watched the birds, brought close to my hammock by slices of banana skewered on a stick. There were at least six different birds that morning, all of them glistening with metallic blues and greens, lemon yellows and blood reds. Deep, dense colours, perfectly patterned and symmetrical. Science, sure, but that day the colours seemed more like magic.
I wept, and felt my heart expand with gratitude. I was a small-town girl with a chronic illness, told she wouldn’t live past twelve, sitting in a rain forest in Costa Rica, listening to the singsong of birds.
I sat still and thought of how lucky I’d been year after year, thanks to my relatively good health.
Then I thought of that list of losses at my first CF education day. How terrifying it had been to see them laid out like that and taped to the blackboard. Real, somehow, in a way that I hadn’t realized before.
At the session that day, I spoke my fears aloud for the first time. I am afraid, like the rest of you. It was oddly comforting. For the first time in my life, I understood what was at stake, and it was time to do something about it.
I needed to be a part of the CF community. I needed to be all in.
Sticks and stones (and CF) may break my bones
But names (you have CF) will never hurt me
I could no longer pretend that belonging anywhere else mattered.
Editor’s Note: This is an excerpt from the author’s unpublished memoir, Not Sick Enough, and is reprinted in Wordgathering with permission.
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About the Author
Debra Mattson is a writer from Newcastle, Ontario, Canada. She writes short stories and has recently completed a memoir for which she was awarded a Writers’ Trust Mentorship Grant.