The sky overhead is grey and glowering, locked with low-hanging clouds that make the earth feel squeezed. The air is cool, breezy, hovering between autumn and winter. I walk with my hands in my pockets, my wool coat held closed with the only button that will still reach over my pregnant belly. I am never sure whether I like these long solitary walks or not. I love the nip of the air, the feel of the wind on my face, the wild scent of raindrops as the light drizzle hits the pavement below me. I love the time alone with my thoughts, the feeling of escape, the openness of the world around me. Still, there is something monotonous about the churning of my legs, one step after another, the same motion repeated again and again. They don’t feel tired today, my legs. After my first block, I decide to keep walking, turning away from my house and widening my path.
The wind picks up as I walk up a leaf-carpeted sidewalk; it snatches the leaves into the air and for several long seconds, I am carried along in a rush of dry leaves, swirling around my feet and legs with a sound like water. It is a magical moment, a good-to-be-alive moment, and I find myself rejoicing in the day—in the wind, in the leaves, in the strength of my own body.
When I get home and plot my meandering route into the computer, I am shocked to find that I walked two miles easily. Effortlessly, I think, remembering the way my legs kept going, the way my breathing was steady. I am overwhelmed by some emotion I cannot name. At the beginning of this year, I couldn’t walk one mile without it feeling like a monumental effort, without coming home afterward and collapsing onto the couch.
This is my year of miracles, my year to make medical history. Eight months ago I started a brand-new medication for cystic fibrosis, groundbreaking in its abilities, but still only available to handful of CF patients with a relatively rare mutation—a mutation I happen to have. In these eight months, I have watched my life slowly change in ways more dramatic than any I could have imagined. I have walked further. I have felt better. I have seen my lung function go up instead of down, and gone for two-thirds of a year without ever feeling the need for a hospital admission. After a year and a half of infertility, I find myself pregnant with a miracle baby and breezing through the pregnancy without any serious health concerns.
These are the kinds of things that you never expect, with a terminal illness. You don’t expect to get the chance to travel back in time, to reach a place of better health and more stability. You don’t expect to spend eight months watching as, one by one, so many of your longest-held dreams come true.
A few weeks ago, I sat in a hard plastic chair, beaming, as a stream of medical professionals came in and out of my room. Each one exclaimed over my lung function test results, my burgeoning belly, my newfound stamina, my health in general. In the lulls between visits I could hear the patient next to me—young; nearly all CF patients are young—talking with his nurse as she replaced his oxygen canister. They wondered aloud if he was up to the walk down to the cafeteria, or if his mother should take him in a wheelchair.
The cafeteria is almost directly below the pulmonary clinic, perhaps five hundred steps.
That afternoon lingered with me for days, and I found a familiar question returning again and again to my heart. Why me? I wondered. Only this time I was on the other side of the fence: I was not asking Why me? Why is my situation so much harder?
Instead, I was asking Why me? Why am I so blessed?
These eight months have brought with them a wealth of complicated emotions. I feel consumed with joy each day, overwhelmed by my own fortune. Every day I walk further. Every day I feel my tiny daughter move inside me, a sensation so magical it brings tears to my eyes, remembering all of the days I thought I would never feel this.
Every day, I am grateful.
But there is frustration, too, and guilt. While I have been experiencing a year of miracles, it seems like nearly all of my friends with cystic fibrosis have been locked in a year of trials. Today, when I get home from my two-mile walk, I learn that one of my very oldest and dearest friends has spent the week in critical condition, unable to breathe on her own.
Like that afternoon in the doctor’s office, it is a stark contrast.
I know that all of my friends are thrilled for me in my good fortune, and I am certainly grateful for it, incredibly so. I wouldn’t trade this year for anything; not only has it changed my day-to-day standard of living, but it has flung open so many doors to the future, exploded all of the barriers that used to exist. In a community of disease where the average life expectancy has yet to hit forty, suddenly old age doesn’t seem like such an impossible achievement. But still, I wish that I could share it, could watch all of the people I love experience similar miracles.
I cannot, of course—not yet, at least, not until science has come a little further and there are miracle medications for more common CF mutations. All I can do, for now, is to make sure that I never take this new life for granted.
And so, now, I pull back on my shoes and re-button that single button on my coat, and go outside again. I am not ready to be done walking yet, not ready to be done relishing the feel of the wind on my face and the strength in my body.
Wanting to hold on, for just a little longer, to that feeling of effortlessness.