Today
CNN featured an article about a 25-year-old Canadian woman who had cystic fibrosis and blogged about the entire experience, even up until two days before her death on March 27.
The article opens the headline "Death at 25: Blogging the end of a life." That's why I initially clicked on the link. But then when the page loads, there is a photo of a beautiful, young woman lying in a hospital bed, a breathing tube wrapped under her nose and around her ears, a slight smile on her lips, her eyes radiating love and exhaustion. Her name is Eva.
I scanned the article and found the blog, called
65 Red Roses. It was named such because when she was first diagnosed, she could not pronounce cystic fibrosis, and instead pronounced it more like "65 red roses." It is colorful. It has hearts. There is a lot of red. Pictures of Eva and her family and friends love, love, loving, the breathing tube a constant companion. She takes pictures of herself in all sorts of stages of life, of sickness: Joy. Exhaustion. Friends. Nausea. Mom. Despair. Boyfriend. Kisses. Style. It makes you catch your breath.
I went through a few entries and found a video of a speech she gave for the Toronto Gala, which she recorded because she could not do it in person. She tells of her struggles with the breath, sickness, and her adventures in love and hope. And she tells her viewers of that epitome of hope: A double lung transplant, hope rising out of another's tragedy, life and death holding hands, one not existing without the other. She tells of walking up steps. Road trips. Falling in love. Dancing. And in the next breath: Her body is in chronic rejection. Her body is rejecting the new lungs.
Now, why would I be sharing this story with you? I don't have cystic fibrosis. I don't think I know anyone who does. But I do know someone who struggled with breath. I do know someone whose lungs were chronically rejected at the end of life. I remember a man who loved his wife and his children, and for my entire life I remember not the sound of his voice, but his wheezing. His puffers. The assumption of chronic asthma. I remember his salt-and-pepper stubble and his three-word sentences between breaths. I remember Christmastime when someone in the family received a play microphone, and watching him hold it (was it a photo I saw?) and knowing he couldn't pretend to sing a ballad into it. And in a cold, dark winter in 1993 when there was only hope left, my grandfather's body rejected his new lung, and I can still remember my father's car in the driveway, home from work early when I came home from school on December 3, knowing that my grandfather was gone. I was 12. He was (just shy of?) 60.
These are the details I remember. Some of them may be hazy. I remember watching my mother lose her father from a genetic disease and tears. My grandmother's exhaustion at caring for him for over a decade, years spent in San Antonio living near the hospital where they would do the transplant, if or when the lung came for him. I remember seeing him lie in his coffin, not breathing but at such ease. Grandma looking at him and seeing peace, not death. I cried in ragged breaths when the Catholic church cantor sang of him flying like an eagle, rising again. I remember the wake at my grandmother's house, hushed, lots of food, TV on in the living room where Grandpa's recliner might have been. Perhaps bowling was on that day. Could have been football. And relief. Relief, relief, relief. Everyone took a huge sigh of relief.
So, when I watched Eva confess to Toronto that her body had rejected her lungs, I cried horribly again, just like I did at my grandfather's funeral. I remember the sound of air being sucked into lungs that refused to work correctly, the body trying to force the air out, exhausted from every effort just to live. What killed my grandfather was not cystic fibrosis, but a disease called
alpha-1 antitrypsin deficiency, which basically destroys the elasticity in your lungs. Your lungs expand and shrink with every breath, but with alpha-1, your lungs expand, expand, expand. You wheeze, you cough, you gasp. Every breath is abnormal.
After that day, when I took my driver's test and passed, I checked the organ donor box. So did my husband. Eva asked that of her following. I knew I had to after watching a stranger's generosity in death give some life back to my grandpa, even if it was for a little while. I remember a picture of him, white dressing gown, white compression stockings, holding a white teddy bear after the surgery, waving and smiling. I imagine snow-white breath flowing in his new lungs, if only for a short time.
My parents were tested for alpha-1. My father is not a carrier. My mother is. This means that my sisters, brother and I will not get alpha-1, but some of us may be a carrier. One day when I can afford it, I will get tested for alpha-1. If I am not a carrier, then my husband won't need to be tested; my kids are safe. If I am positive, my husband will need to be tested. Some days I wonder, wonder, wonder.
To answer my own question: At 25, I was married, a mother to a daughter, and working as a project manager in Rochester NY. My husband and I were on the verge of a move to California, an adventure with risks, questions and no map. I was violently ill from the anxiety. I dropped 20 lb. that summer. My mother and sister came to pack my entire kitchen the night before the movers came. In a moment of anxiety, my memory sharpened, smells remembered, songs on my iPod that play to this day and whip me back to that moment. I was living. I lived.
In yoga we are taught to mind our breath. The practice revolves around, depends on the breath. To open, to shine, to fill yourself up, to enable your body and mind to practice. The breath follows the muscles' movement: In to expand, out to contract. When I labored with my daughter Sela last year, my husband driving 80 mph down the highway to get to the midwife clinic in time, I turned up the Red Hot Chili Peppers and let my breath in and out wild, groaning, screaming from the pressure, feeling the warm Sunday morning air whip through the car. I was living. My baby was living. I lived.
Do you realize how much your life is centered around breath? When we do not mind our essence of living, we neglect to mind that which can kill us. I read about Eva's life centered around breath. Her struggles with cystic fibrosis and my grandfather's struggles with alpha-1 embraced breath, no matter how hard it was to suck in one more liter of oxygen. While my practice in yoga is a choice, theirs was necessity. A disease pulled them into their very cores of their lives, of their bodies, and forced them to be aware of every breath, every cage-rattling, painful, wheezing, drowning breath, forcing them to examine every detail of it. It is what yoga asks of the yogini, to examine every detail of the breath in connection with the body, to realize that they are not separate but one, breath and movement locked together, one not existing without the other.
And so it is with life and death. If we live, we die, and yet we cannot die if we do not live. I imagine Eva and my grandfather, beautiful souls intact, dancing and singing, perhaps raising their hands in the air, saying Lord let's fly, leave unto the Earth what belongs to the Earth and take all that belongs to you.
Today when you pray, or when you approach your mat, or when you are discovering positive energies, remember these two people. Pray for them. Dedicate your practice. Do what you do to mind your breath and your life force in memory of them who so painfully did the same.
Eva Dien Brine Markvoort
James DaValle
Edited at 5:29 p.m.: One of Eva's friends featured in the documentary "65 Red Roses", based on Eva's fight against cystic fibrosis, is a woman named Kina who lives in Girard, PA, just down the road from where I was born and raised. Many of my family, classmates and friends from that area know Girard well.
Eight years ago, I wrote about Barack Hussein Obama, a man. He is now a former President, and this country elected Donald J. Trump in his place.
