"Numbers" by Debra Mattson
It’s a numbers game, this CF life.
It starts before we’re born.
There’s a one in twenty-five chance that a person is a carrier of the CF gene. When two people with the CF gene have a baby, there’s a twenty-five per cent chance that baby will have CF.
After we’re born, we’re tagged, labeled, and evaluated for our entire lives based on ever-changing tools and values. We’re measured against optimum health, or what most of us call ‘normal.’ Like the insurance table, where an arm is worth $400 and a limb $1,000, it’s a form of currency in a way.
We are told our success is based on a number of some sort. A way to buy the good graces of the medical establishment. Here, at all of my medical appointments, I must constantly quantify as a body to qualify as a human. To qualify for treatment, for insurance coverage, for access to experimental medications, for a lung transplant. Don’t you dare miss one pill or you’ll be pulled off the transplant list. Compliance is king.
I know that we all need to have measurable information. How else will we—patients and medical professionals alike—know what’s going on? We have to have ways to see if treatments are working, to watch for red flags and worrisome trends. Of course. It’s science. These numbers provide structure and trace progress and help researchers figure things out. They are meant to help. And they do help.
Still—it’s all so tiresome.
“Let’s check your BMI. What’s your weight this month? Oh good, you’ve gained weight.”
“What’s your blood glucose level at? Oh, not great, might be time to lose a little weight.”
“How are those Pulmonary Function Tests? Up from last time? Amazing.”
“The same as last time? That’s good.”
“Down from last time? Let’s investigate.”
“Thirty per cent or lower? It’s time to get you on a lung transplant list where twenty percent of you will die waiting.”
“Your urine numbers show a decline in kidney function.”
“How many medications do you take? Twenty-one? Well, we hate to add another, but we need to try something.”
“Your blood pressure is high.”
“Don’t forget to indicate how many tablespoons or cups or ounces in your food diary. That helps us accurately evaluate what you eat. There are calories to be counted. Remember to write the calorie per serving down.”
“How many bowel movements a day? How many pushes to get one out?”
“How many tablespoons of sputum did you cough up in one day?”
And who can forget about the big one? The most important, confounding, worrisome number of all: that number that tells us how long we’re going to live. The one that I had on a poster on my bedroom wall when I was a child.
Julia is twelve. She has just reached middle age.
That mean age of survival number has chased me my entire life.
In the nineteen fifties, the mean age of survival with CF was five. If I had been born in that decade I would have died as a toddler. What hope would my parents have had for a happy life? The death of a child is no small thing to recover from. Many marriages don’t.
In the nineteen sixties, the mean age of survival was fifteen. Then, in the nineteen seventies, it increased to twenty-four. By the nineties, it was thirty-one. If I had died in my twenties or thirties what hope would my husband have to be himself again? I mean, I’m quite sure he’d remarry—most do—but surely, he would never be the same.
If I had died in my forties, there would have been an impact in CF fundraising, I don’t mind saying it. I gave hours upon hours to that fight and to find dollars.
The mean age of survival now, in 2024, is fifty-seven.
Can I run past it, I wonder?
Can I outrun it entirely?
Oh, the tyranny of numbers.
I will do what I have to do to live with these numbers. I’ll be compliant, don’t worry. I know it’s all for the best. But I’m so damn tired of being tagged and chased by them.
