To breathe: What were you doing at 25?

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.

What a Decade

I know most of you are probably sick of the whole "let's reminisce about the good ol' days" recaps about the last 10 years already, and it's probably because they were pretty damn depressing. Let's admit it: There's been a lot to be sad about these past 10 years, starting with the whole world ending when the clock struck 2000 (it didn't, obviously) and ending with a war and a recession.

But I think these past 10 years were probably the most exciting for me yet. I'll have to count the life-changing events in there because there were so many. Tuck in for some reminiscing and allow me to take you through the last 10 years of my life:

1999: I graduated from high school in May and attended college at Penn State Behrend, and starting working at Wegmans (I will always have fond memories). Is this when Spence wrecked his first car? We take our annual family trip to Maine.

2000: Spence graduates from high school and decides to attend RIT in Rochester. He proposed to me that summer and I accepted. It was the beginning of a three-year long-distance engagement, and particularly depressing for the first few weeks. Spence drives his Relient K home to Erie every few weeks to visit. Our first OBX vacation. I get a tattoo and hide it from my parents for about a month.

2001: September 11. I will always remember this year, as will most Americans. Is this when the Relient K dies and Spence has to learn how to drive an '87 ('84?) Corvette in the snow? He teaches me how to drive it, the first standard I'll ever learn to drive. I start learning the layout of Rochester, NY and meet his roomie, Greg and friend Terry from work.

2002: At first, I can't remember a darn thing that happened this year, but then I remember - school is in full swing. I was elected president of Behrend's chapter of APO for both semesters in 2002. Promoted to managing editor for The Beacon. I'm a Schreyer Honors scholar and start my thesis work in the fall. Another OBX vacation. I turn 21 and get my belly button pierced and party. Spence starts a full-time job and school full-time.

2003: Pass thesis defense. I graduate from college. Spence and I marry in July, and we move to Rochester. After a fantastic honeymoon, I am not happy to leave Erie and have to adjust to living away from home for the very first time. Over Thanksgiving break, we buy two cats who are litter mates - Wesley and Buttercup. Our first apartment, a 750 sq. ft. one-bedroom flat, cuddles us in nicely. I work two jobs - Wegmans and the beverage cart chick at a local country club - and then land a job as a project manager at Element K.

2004: I find out on September 11 that I'm pregnant. I spend the rest of the year trying not to puke. One look at our one-bedroom flat and it's time to ask friends and family to move us into a two-bedroom townhouse down the street. With many tears, sweat and curse words, we serve free pizza and beer to those who moved a king-size mattress and solid oak bed set up our narrow stairway. Another OBX vacation in the summer.

2005: The words "starting a business" and "California" escape Spencer's lips when I'm eight months pregnant, and I cry at the thought of moving so far away from family. Rachel Anna makes her debut on May 17 after over 33 hours of labor (three hours of pushing) and the summer is bright, hot and spent on maternity leave, recuperating by walking up and down Lilac Drive every morning. Spencer graduates five days after her birth, on my birthday. OBX vacation.

2006: "Starting a business" and "California" are a reality. Spence leaves for California in May while I pack and wrap up our life in Rochester for a new endeavor on the West Coast. I lose the rest of my baby weight (20 lb.) during this time and remember sobbing as I left my mom and sisters in the Buffalo airport. California welcomes me in August with endless blue skies and seeing my husband for the first time in 10 weeks. I begin my own transcription business with the help of my aunt as a transcription apprentice. OBX, Florida and Maine that summer, but without Spence. We cook our first Thanksgiving dinner by ourselves. Weekly webcam nights begin. I join Facebook and MySpace.

2007: Life in California becomes habit. Spence works nonstop to keep a roof over us. Rachel and I spend the time exploring Sunnyvale. Spence, Rach and I spend Saturdays exploring the coast, getting lunch and enjoying San Francisco, Monterey Bay, Half Moon Bay and the Pacific Ocean. I get my nose pierced. My mom comes to visit around Easter, and then the rest of my family come in July to see the West Coast. I fly home in August for baby showers, parties, friends and family. We come home for Christmas. The economy crashes and the housing bubble blows. The business is on its last legs.

2008: The New Year brings new decisions - Spence decides it is time to move back East and start exploring other business avenues. Spence leaves to start his job on April 1. Mom comes to California one last time to help me pack. We hire movers this time around to carry our boxes and unload for us in Pennsylvania, in a quiet town south of Pittsburgh, in a three-bedroom townhouse. Cindy gets married. Elizabeth gets married. I get pregnant again and spend the rest of the year trying not to puke. We start to pay off debt from the business venture. OBX vacation.

2009: I get another job doing medical transcription. The country elects a black man as President. Tim gets married. Sela Chloe is born with flying colors (that's a gross pun) in a mere four hours of labor. The day is bright, hot and spent cuddling in a quiet birthing facility in downtown Pittsburgh. Family comes to celebrate I sleep in my own bed that night and shower in my own bathroom in the morning. We miss OBX. Sela gets colic. Rachel starts preschool. Sara starts driving.

I think I have more than enough to be thankful for as this decade begins to wind down. I count 15 life-changing events in this decade (one marriage, two graduations, four moves, two kids, three job changes for me, three job changes for him).

If you look online, the past decade is full of unfulfilled dreams, unpaid bills, a war and a warmer climate. You'll probably find something different, though, if you look in your heart. What was your decade like? How do you want your next decade to look? Me? I hope the next decade looks just as good as this past one.

Jesus and the Crossroads

Every once in a while, I sit back and wonder if what I'm doing as a parent is really right.  What kind of impressions am I making on my daughters?  What good is coming of my parenting?  Are my anxieties, fears and mistakes that are permanently blemishing their newly forming minds that will screw them up as adults?  Things like that.  There is so much information available at our fingertips, so much to teach and know when those questions come from their tiny mouths, that sometimes I wonder if being left in the dark is better for our family... and yet, this is how prejudices are formed, when one refuses to accept learning as a lifelong journey.  And that is something I am very sure that I do not want my children to learn, especially if it's the last thing they DO learn.

I bring this up because parenting a family must be something like how a modern day clergy for any particular religion must feel.  Here they have a congregation, whether it's just a tiny community of a few families and friends, or a stately church within their own land with millions of followers around the world, contemplating how to guide their faithful in the ways of those in the holy texts that began it all.  In this modern age, I don't doubt that some of the moral decisions being made are not only challenging those beliefs, but also trying to make sense of when that information, that freedom of choice, that free will becomes more burden than benefit.

Take the matter of procreation.  This day and age, nearly any couple could be given the gift of a child even if their bodies are not supplied to do so - whether it's hormones or sexual orientation, the boundaries that used to restrict childbearing to those blessed by evolution are being broken with amazing speed.  While I do not want to comment on the moral, religious implications of IVF and surrogacy, you can't help but wonder if the religious authorities really, truly know what to do with this.

Now, coming from a Roman Catholic household, I know exactly what the Church has established with regards to procreation, and I can sum it up very succinctly for you:  Anything that is not completely, 100% natural is not permitted.  No hormones, no condoms, no surrogates.  Excluding adoption, the marriage of a man and a woman and their fruits of their physical love is the only right way to procreate.  It also seems to me that most Abrahamic religions (among them Christianity, Judaism and Islam) hold similar beliefs.  So it is interesting to me that this couple, who were implanted with someone else's embryo during IVF, consulted a priest about what to do with the child and how to handle the situation with the other couple (the genetic parents).  They say that it was not really a decision, that they knew that they must carry and give this child back to the genetic parents, but all the same consulted a religious authority about the decision.

To which I reply:  How the heck do you answer a question like that?  You've got to wonder if Abraham knew this kind of moral dilemma would plague future generations.  Granted, in this day and age, you usually don't get the finger shaken at you - "This wouldn't have happened if you didn't use IVF in the first place!" - but you wonder if they think that before trying to advise them on what to do now.

Some days, I wonder if religious authorities simply are trying to keep up with these kinds of moral dilemmas, which are popping up right and left.  Often I wonder how clergy are dealing with such things being shared, whether it's in the confessional or just among friendly chats, and whether they are actually providing more guidance than the heads of churches simply because they can't keep up.  It's kind of like the process of how the U.S. government passes legislation:  So bogged down by trying to do what is right, that by the time they get the legislation signed by the President, someone's already found the loophole.  But when it comes to religious law, the stakes are much higher - not dealing with earthly judgments but those of whatever afterlife they believe in, trying to do right in this life in order to be rewarded in the next.

I really can't say if this couple was right or wrong in pursuing IVF, because it's a decision I've never had to entertain.  Even though a third party helped them to pregnant bliss, would one believe that God still blessed that embryo with life?  Even though we're told that unnatural ways of childbearing is not right, is not God still involved in the process?  Doing right by the people who are the most defenseless - the poor, the unborn, the elderly, the sick, the unwanted, the wrongfully accused - still is the bottom line, no matter what kind of technology we can dream up.  So I do believe that they made the correct decision in light of the clinic's mistake by carrying the child to term and agreeing to give the child back to the genetic parents.

Still, it's a cautionary tale.  As we find more ways to use technology and medicine to resolve today's problems, the debate as to what is "right" and "wrong" becomes more arbitrary than based on rules.  When you see someone die from Alzheimer's, lose a breast to cancer, or experience the indignity of muscular dystrophy, it's easy to understand what drives us.  But we do have to be prepared for the debate of when such things go wrong, and especially when they involve an innocent, new, unblemished life.