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‘Breathing for a Living’

Most of us never think about breathing, we just do it. But for some, the very act of drawing breath is a battle. This fight for air, and for life, is chronicled in a new book called “Breathing for a Living.” The author, Laura Rothenberg, suffered from cystic fibrosis, and died at the age of 22, just last March. Her mother Mary Rothenberg and her godmother Debra Winger share their memories of t
/ Source: TODAY

Most of us never think about breathing, we just do it. But for some, the very act of drawing breath is a battle. This fight for air, and for life, is chronicled in a new book called “Breathing for a Living.” The author, Laura Rothenberg, suffered from cystic fibrosis, and died at the age of 22, just last March. Her mother Mary Rothenberg and her godmother Debra Winger share their memories of this extraordinary young woman with “Today.” Here's an excerpt of “Breathing for a Living”:

THE DECISION

I wake to sleep, and take my waking slow.

I feel my fate in what I cannot fear.

I learn by going where I have to go.

-Theodore Roethke, “The Waking”

I am having a midlife crisis. Tomorrow I will be nineteen. It sounds melodramatic. But technically I should have had this crisis five years ago-my life expectancy according to average statistics is twenty-eight years.

However, most without cystic fibrosis (also known as CF) have a midlife crisis at age forty and some die at sixty-five, so I imagine it’s okay for mine to be a little late. Had I been born ten years earlier, in 1971, I would’ve had my midlife crisis at age five. How does a kindergartner have a midlife crisis? Friends tell me not to worry, that I should be more optimistic. So, I sit in my dorm room each morning with Irish Breakfast tea in my Coffee Exchange mug, the sky blue carpet scattered with papers, books newly bought from the bookstore, and an unmade bed.

Lately I’ve been somewhat athletic. This is my third time swimming in the past week and a half-not bad. I’ve also been doing the bike in the gym, which the doctors have been trying to convince me to do for years. Kat, my roommate, tries to get me to stretch first, but I’m not patient enough. It’s cold when toes go in, but once I start my breaststroke, the water’s refreshing. I start thinking. Well, I took lessons for a while at the 92nd Street Y. That’s where I learned how to do the crawl. Now I get out of breath if I try to do it. Last March I was in the Caribbean and the water was the same aqua color as this, except it didn’t smell like chlorine, I couldn’t always touch the bottom, and tickling fish surrounded me. I even saw a stingray-scary. One lap down, twenty-nine to go.

I’m a typical college student, if there is such a thing. Except that I won’t be able to look back on my life from an old age. The minute I begin to hypothesize about when and where and who-it upsets me. I often imagine scenarios in my head as I fall asleep-my lung collapses, they rush me to the hospital, I have to take a leave of absence from Brown, or I suddenly spike a high fever and I’m coughing up blood. . . . I could go on and on, but it even makes me queasy. I think about death every day. I wrote a poem about my funeral when I was seventeen.

Part of me wants to grow as old as I can, to live, but the other part is worried about living. As I get older it will be worse; walking to the corner will tire me, coughing will never cease, breathing without oxygen will be impossible. I will look like I have CF. Slowly I will notice and feel the difference more-what happens when I want to have children? I don’t want to have twenty godchildren and not one of my own. So I look back from now, my midlife point, and evaluate.

Summarizing all that I’ve done in life is pointless. Instead I will highlight moments, as I highlighted my hair the other week. I was a bossy child, to the point that family friends even had to take orders. My favorite books were, by far, Curious George Goes to the Hospital and Madeline, not to mention one from a book club we belonged to about a bunny who got an invisible bag for Christmas. My dad recited poetry to me as I was falling asleep during my elementary school years. I never liked to be alone. To this day, he claims it is because of him that I like writing. He insisted on telling my poetry teacher at the UVA Young Writers Workshop this fact before we headed home that summer-it was a long drive during which we stopped to eat lunch in Baltimore. I’d never been before. My dad constantly wants to share what he knows. I am the same.

Twenty laps to go. I’m getting tired, but I think I can stick to my original goal. Rest for a few minutes, watch the girl in the Speedo sprint by effortlessly, spit a few times, and dive deep.

Letter writing started when I went to Camp Nashoba North in Maine for three weeks. I was eleven and in a cabin with girls who were all twelve, except for Beth, who was thirteen. We lip-synched to “Baby Got Back” and everyone was shocked. Even then I got more mail than most kids, and the trend continued the following summer when I returned. At summer camps at Wellesley, Bennington, and UVA it was the same-I was the one who was always writing letters, especially in more recent years with lists of 150 to 200 people to write to in a matter of weeks. When I find a letter in my mailbox at Brown, or when I scour the mail that arrives on our doorstep in New York-much later in the day than it should-and find one, I smile. Others smile across the country, or even across Central Park, when they get my letters, especially since I decorate them with stickers and decorative stamps. Connecting to friends when apart, as I will with my friend Lauren over e-mail while she’s away in Asia for four months, is a must for me.

I learned to drive where I learned to ride my bike-the Jersey shore. Beach Haven’s familiar main drag is where I biked for years each morning to get cheese and the paper from Rommel’s Liquor store, cold cuts at Beal’s (now called Murphy’s), and danishes, croissants, maybe even a pie for dinner, from Jack’s Bakery. So crowded in the mornings that sometimes my number would be 40 when they were only on 25. Now I drive. This tradition, like the one of seeing how many states’ license plates we could find on the island each year and making a list, or corn on the cob for dinner and breakfast, was something to look forward to. I only missed one summer there. I was six, got horribly dehydrated, and had to be hospitalized-the first time since I was a baby-for three days. My parents rushed me back to Dr. Smith’s 69th Street office and he said in his nasal voice, Laura, you look like a prune! I wish I could say the same for your father. Humor makes acidic difficulties more basic.

Ten left. At a certain point the laps go faster, I think, because I get so caught up in thoughts that I forget to keep count, and then suddenly I’ve done four instead of two. My mom used to tell me that a watched pot never boils. She’s right.

My prom was as I wanted it to be. I nervously asked my friend Will to go with me on the phone one night in March. I’d been putting it off for weeks. I don’t think I even said it at first, just, So, do you want to, well, you know? And of course he was confused. He arrived at EB’s house late. All the dates were wearing tuxedos and had bought corsages. I was worried he wouldn’t bring one because I hadn’t reminded him. In he walked, smelling like a cigarette, in his tie and jacket with the biggest corsage of the night-a rose with heather. It matched my pale purple strapless gown perfectly. The prom itself was not what was special. In all actuality it was small, since my graduating class of forty was all girls and not even everyone came or brought a date, and composed of a mediocre dinner, and dancing, which is not exactly my thing.

We arrived at Cynthia’s after-party in a cab. The rest of the evening consisted of dancing in her living room, having a bit too much to drink, talking on her patio, hearing stern voices yell from adjacent windows that we should Shut up! and taking walks with Will. Yes, I talked about death on my prom night, and he fell asleep leaning against a stoop, with me leaning on him. The sunrise may seem corny to others, but it being my first all-nighter, it was a must. I stumbled with Will’s help to the East River promenade-across from which I’d gone to school for thirteen long years. Eventually we were all there-sitting on benches, lying on a broken box if you were EB, Cynthia, and Susan, or dancing together like me and Will.

Two more laps to go now and then I will pull myself out of the pool and sit in the sauna to dry off, gossip with Kat, and think some more. Sweat is cleansing.

So, back to my crisis . . . here I am, at college, and I can’t write about the future. I can’t even make one up because I fear I will jinx myself. Kate had to have a lung transplant when she was nineteen, Marcy had to take a year off, Elizabeth Fleuren died a few months before graduation from some small college in North Carolina. At the funeral her mother told me that I have to be the survivor for all my friends who did not make it. I felt pressured, although I know she didn’t mean to put any on me. Do I really want to be the only one left?

I’m on my way back to the dorm now-jeans, fuzzy Patagonia jacket, hat to keep my wet hair protected. I made it through my laps-I didn’t think at points that I would, but I did. Yup, just the typical college student about to have her birthday away from home for the first time.

AUGUST 11, 2000

I remember before this summer became taxing. This past year I lived like I shouldn’t have. I experimented, I dared, I tested. I wished it to go away like I would a cloudy day-something I have no control over, yet I thought that just by wishing, the outcome might change. Those days in Providence where _I did practically nothing and didn’t worry that I was wasting time because college days should be like that-complete procrastination.

Next door a child screams while blood is drawn. I want to tell him that it isn’t so bad, that it’ll be over in a few minutes. I want to say that I’m not that sad, that I can accept what’s happening to my body. And in some ways that’s true. After the last year I am ready.

But there are still globs of green gunk in my lungs, still arthritic knees, still low-density bones, still a pancreas that doesn’t work. Now there’s another part of the pancreas that doesn’t work. And I will be here for years-getting tuned up like the car in the shop. Except I won’t be able just to trade in for a new one when I get too worn out. Keep coming in to get holes and leaks patched. And I tell myself it’s not a big deal-it’s just what I have to do.

And sticking myself with insulin is not that big a deal-it’s just what I have to do. So many people in this world take shots for diabetes. I mean, they eat, breathe, and sleep regimes and diets. If I keep telling myself that, maybe I’ll believe that it won’t make a difference. I keep pinching myself when the needle goes in, then the pain will lessen. None of my friends with CF had to do it-before they died, none of them did it. This is what I get for living longer. Instead of a thousand dollars, or a car or at least a shopping spree, maybe some flowers or an award I just get more medical problems.

Dad cried on the phone because he said he doesn’t want my life to be any harder. And when he cries I become sad. I’m crying now and the teardrops are bouncing off the oxygen tubing. The hardest part is that I don’t know what I want, what I’m trying to live for exactly. Do I want to keep coming in and out of the hospital, slowly watching the decline, for as long as possible? Do I want to get a transplant? The disease’s grasp on my life is not going to just ease up or disappear, and I don’t know what I should do. Live each moment to its fullest and then what? What do I actually do with my days? I appreciate little things. Well, that’s because it’s too disappointing to think about all the big things I want but can’t have-so I settle for less. That’s all it is-not a better way to live, just a consolation.

Two weeks from today I’ll be heading back to Brown for sophomore year. And I’m excited. But I’m also scared. I don’t want to think about any of this at school-I want a break. Kat is an amazing friend-her e-mail last night just made me smile, about how she’s always wanted to inject sharp objects into me. She’s a pre-med friend who can practice on me.

I remember before they all died when I was the young one and I knew I could do it because they did. And now . . . we’ll see. I’m doing this alone now. Friends behind me, but no one guiding in front. Maybe I like planning so much because I can’t really have a life plan.

Since Marcy’s death, almost three weeks now, I have thought about my future a great deal. She had finished college, had a boyfriend, had a job as a middle school English teacher in New Jersey. How can I continue here now that she is not able to lead me? I have known many children with CF over the years, but now most are dead. I often feel guilty.

I hope that living without her here will be easier than I imagine. Marcy knew what she was doing, she trained me to survive, she wanted me to go into the hospital, to take my now needed insulin, to have a lung transplant. She taught me to go on, to bounce back from physical and emotional barriers-I’m not allowed to give it up. I want to say it’s only for myself, but my parents, my family, my friends. I’ll do my best to fight because I don’t want them to experience the pain of loss.

I’ve been invited by Marcy’s mom to speak at her service. I think it’ll probably be me, my parents, and Dr. Ores.

Excerpted from “Breathing for a Living,” by Laura Rothenberg. Copyright © 2003 by Lauren Rothenberg. Published by Hyperion. Available wherever books are sold.

If you’d like to make a donation to the Laura Rothenberg Fund, you can do so by writing to:

Laura Rothenberg Children’s Hospital Fund

c/o Boston Children’s Hospital

138 Harvard Street

Brookline, MA 02446