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This essay is an excerpt from a memoir-in-progress, The Joy of Running qua Running.

Early in 2008 certain of the sentences below were extracted from the essay and cobbled together to form two short newspaper articles. The sentences that interested the newspapers were the journalistic W Questions: What: A race to raise money for Fanconi Anemia research; Who: Peggy Padden; When: Pretty soon, on a Sunday; Where: On the Waterfront; Why: Because one son is dead, and another affected.

As happy as I was that the newspapers wanted to publish these stories, and as optimistic as I was that they would bring out more runners (=more money), I couldn’t suppress some measure of disappointment that the essence of what I was going after was lost in the editorial process. So, here, in brief, to be sure that it isn’t lost again, is what I mean to be the essence of this essay: Peggy Padden, tragedy-stricken, affirms life with gusto. And here’s something else that I want to maybe make more explicit in the essay now: My fascination with, and admiration for, her affirmation.

Caffe D’arte. Irvington neighborhood, Portland, Oregon, USA. 4 p.m. A football game is on in the corner, but no one is watching. A man reads the paper. A woman looks over her notes. The baristas tidy up, awaiting their next customer. I am waiting for Peggy Padden, whom I have not spoken to much in close to two decades, since she was one of the mothers who drove in my elementary school carpool. Yet meeting her doesn’t feel strange—probably because of something Peggy Padden has: presence. She is a staple of the NE Portland community. During the years since I really knew Peggy, I’ve seen her running past my parents’ house; at the Irvington Tennis Club; at coffee shops; at restaurants; at road races. She’s ubiquitous. And now she’s here, bounding down 15th Ave., bursting through the cafe doors. I rise to meet her as the others take her in. The barista asks what we’d like. After ordering a nonfat latte, Peggy asks for an ice water too. Now, normally that would be no big deal—it’s just an ice water—but there’s something about how she says it. Somehow, the way Peggy makes her requests, people are eager to fulfill them. Suddenly I’m being offered water. And so is the man with his newspaper, and the woman with her notes. Everyone is smiling, enjoying Peggy’s impromptu water party. And that leads to something else that Peggy Padden has. Peggy Padden has gumption.

It’s something she needed in spades a few years ago to put together something she had no business putting together. But first some background. Peggy Padden has a family. She and her husband, Glen, have lived in NE Portland for twenty-six years and raised three boys there. Early in 2003, while he was a junior at Carroll College in Helena, Montana, Peggy and Glen’s oldest son, twenty-one-year-old Jake, called to say that he was getting some blood work done. He had been getting sick more than he was used to and having a hard time recovering from illness. Although Jake had been a pole-vaulter in high school and had taken up running that year, now when he finished a run he felt like he’d completed a marathon, even when he’d only gone a few miles.

I’ll insert that at one point in the first interview (we actually met twice, but for narrative reasons I’ve collapsed them into one more-efficient meeting) when Peggy asked me what prompted me to write this story, I was partially ashamed of the truth I told her—that I was writing about running and thought her story was valuable—ashamed that I wasn’t somehow coming to her with purer intentions. Jake always seemed to me to be very sincere and generous, and my own self-consciousness around Peggy came from this remembrance. I imagined that if my role and Jake’s were reversed and he were meeting with my mom, it would be only to help my family, not also to help himself. Talking to Peggy, I felt like a bad person, even though I don’t really believe in “bad people,” or necessarily think that a measure of self-interest would be a defining condition thereof. That’s just how it felt; the arbiter of my being is my experience of it, not my ideas about what it should be.

On February 28 (Peggy knows this date, you can be sure, and all the ones that follow), the blood work came back; the doctors told Jake’s fiancé, Beth, that they thought he had leukemia and that she needed to bring him into the hospital immediately for further testing. Peggy, Glen, and the boys packed up their car and drove straight to Helena, where Jake remained in the hospital for two weeks. Further testing revealed that Jake did not have leukemia, but myelodysplasia syndrome. MDS is a rare condition marked by an inefficient production of blood cells and is often a precursor to acute myelogenous leukemia. Jake would need a bone marrow transplant and better medical facilities than were in Montana. The family went to Seattle.

Peggy, Glen, Beth, and Jake flew from Helena in a private jet to minimize Jake’s exposure to germs. Then Glen flew back down to Portland to pick up the couple’s two younger boys. In Seattle the family looked for a bone marrow match, beginning by testing themselves. The chances of a person from the general population having matching bone marrow are about 1/20,000–50,000. The chances that a sibling will have matching bone marrow are 1/4. With two brothers, there was a fair chance that a donor would be found in the family. Everyone was optimistic. And when the tests showed that Jake’s youngest brother was a perfect match, they were relieved. “It was a dream come true,” Peggy tells me.

For two weeks they prepared Jake and his fifteen-year-old brother for the transplant, making sure both were as healthy as possible. The transplant was scheduled for April 8. As the date approached, Peggy sat down for another meeting with a doctor to go over some final details. As they were sitting, the doctor was reviewing some results when his jaw dropped, and his face went pale. He said that something with the youngest boy’s blood wasn’t right, that they needed to do some more testing.

After testing her youngest son, the doctors told Peggy that now two of her children had myelodysplasia syndrome. She told them it couldn’t be. How could two of my sons have the same rare disease? A disease that usually strikes the elderly?

At first, the doctors didn’t know how two of Peggy’s sons could have it either. It was too unlikely. The only possible explanation was that there had to be an underlying cause, which they soon realized there was: Fanconi anemia. The time it takes for a life to change can be as short as a sentence. Peggy, who recently thought she had a cure for her sick son, found out two of her sons had (what she’s hoping to stop from being, but currently is) a death sentence. Peggy Padden has strength. She’s got to.

In a vague way I knew all of this before the interview. I remember hearing that Jake was sick; I remember when everyone from the neighborhood was getting their blood tested to see if they would miraculously be the life-saving match. I attended the funeral that came at the end of the failed search for marrow. But before meeting with Peggy I didn’t remember the name of the disease. I knew it was genetic, and that it affected his blood. I realized it was the same thing that the president of the University of Oregon had lost children to. But that was about it. I didn’t know the specifics. As Peggy gave me the story in more detail (but certainly not as much detail as she saves for some) I tried, somewhat ineffectively, to stifle my tears, so as to appear professional and non-exploitive. Later, when I was working on the story, I dropped that pretense.

Fanconi anemia is a recessive genetic condition, which means that Peggy and Glen are unaffected carriers. Their recessive genes were passed on to Jake and their youngest son. Their middle son ended up with a dominant gene and does not have the disease but is a carrier for it. Statistically, one out of four children of unaffected FA carriers should be affected. That Peggy and Glen’s children went two out of three is just bad genetic luck.

Luck. The word I used with more intention than any other. There was no reason for this suffering. It just happened. This is the kind of world we find ourselves in: things happen, some good, some tragic, and, if we are like Peggy and her family, we can make the best of it. It’s damn-near inconceivable that people die as Jake died, but we’ll all die one way or another—it’s one of our only certainties—and for some of us it is imminent and will be painful. Had luck played out another way, it could have been Jake talking to my mom about a 5K for a different disease. A childhood friend has brain cancer. That could be me. A cousin committed suicide. That could be me. People die in car crashes... But so far those haven’t been me. I’ve been healthy, not mostly, extremely—but I haven’t earned that and it was hard sometimes to keep eye contact with Peggy because I thought I might be able to sell the article, and I knew I was going to run in her race, and that my goal would be to run it in 19 minutes (or hopefully faster)—and I felt guilty and I didn’t want to feel guilty.

Usually people with FA are born with certain birth defects (absent digits, a small head, kidney and/or eye problems are common) which can tip-off a search for the cause. Neither Jake nor his brother were born with any defects, so there was no reason to suspect a thing until Jake started showing symptoms of MDS at age twenty-one.

The best treatment for FA is still a bone marrow transplant. A successful BMT can stave off the anemic symptoms and prevent bone marrow failure, the most common cause of death for FA patients. Though even a successful BMT cannot lower a patient’s increased chances at developing cancer (another symptom of FA patients who make it into adulthood). Jake’s family redoubled their efforts to find him a donor. They held drives in Portland, Seattle, and Spokane to get more people on the blood marrow registry, desperate to find that 1/50,000 match.

As spring turned to summer Jake was getting sicker and they still had not found an ideal match. Feeling like time was running out, they went to the FA Center in Minneapolis where they could get him a transplant from an unrelated mismatch donor, an imperfect option but at least a chance.

The transplant was on July 16; Jake never really recovered. In August he was allowed to leave the hospital, but after a week had to return. About that week, Peggy says that Jake was excited to see the Mississippi River, and asked to be driven over it. At the hotel he talked about getting a treadmill for when he was better, and asked about the local theater. “Jake never complained,” Peggy continues. “He loved life. When we were in Seattle and I saw all the other sick kids, bald from chemo, it started to hit me. But Jake was looking out the window at Puget Sound, saying what a nice view it was and talking about taking sailing lessons. And the art. He loved the art on the walls. He loved everything really. And he was sincere about. He wasn’t just doing it to make me feel better. He loved life...”

Peggy trailed off at this point. I didn’t know quite what to say to a mother telling me about the end of her son’s life; I concurred that Jake’s passion was clear and distinct in my mind too (it still is). I will further attest now to Jake’s uncommon sincerity and advance my suspicion that in his unbounded joie de vivre, he was well-influenced.

In early September Jake had a serious infection and he was taken back to the hospital, where he would remain. Just before going onto a respirator and into a medically-induced coma, Jake spoke to Beth and his family for the last time. The doctors didn’t expect him to make it through the night. But they were discounting another piece of maternal inheritance: persistence. Jake made it through the night and then some. Long enough for Beth to decide that she didn’t care if he was dying; she wanted to marry Jake anyway, in the eyes of God. Peggy knew that Jake would have wanted this too, so when the priest was brought in to perform the ceremony over Jake’s hospital bed, it was she who spoke her son’s vows.

Over the next several weeks Jake’s family would sit by his side and talk to him, wondering if he could hear them. By October 24, it had gone on long enough; they spoke to him for the last time, and took Jake off of the respirator.

As soon as the interview was over I took a long run up Mt. Tabor, a volcanic cinder cone in SE Portland. The volcano is extinct, but I imagined what would happen if it erupted. I thought about death (mine and everyone else’s). One day everything will be gone. It has to be. I need it to be. I want all record of me erased from time, and I think somewhere in their depths everyone wants the same. When we’re all dead and if in the future new intelligence evolves and finds our fossils it (they) won’t know, unless they find our books too, our shortcomings or who had regrets or who watched their loved die too young—part of me wants to be there now so all this contingency will be resolved—none of this will be answered, but all of it will be erased—or at least no longer complicated, or at least forgotten, and then what’s the difference? Death makes equals of us all. Absolute death—the death of consciousness—will erase tragedy—and there’s something seductive about that (that time may come for all at once, but at least it will come for me in time). In the meantime there’s life. And even when I’m melancholic I know that I want Peggy’s strength to affirm in the face of tragedy, that I have no choice but to, that I can because it will all be erased. When I got to the top of Mt. Tabor I stopped and looked out over Portland. I couldn’t see the neighborhood where Jake and I grew up; that view was blocked. What I could see was downtown where I knew I would run in Jake and Peggy’s race in a couple of months, and hopefully run it fast.

***

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The best treatment for FA is still a bone marrow transplant. A successful BMT can stave off the anemic symptoms and prevent bone marrow failure, the most common cause of death for FA patients. Though even a successful BMT cannot lower a patient’s increased chances at developing cancer (another symptom of FA patients who make it into adulthood). Jake’s family redoubled their efforts to find him a donor. They held drives in Portland, Seattle, and Spokane to get more people on the blood marrow registry, desperate to find that 1/50,000 match.

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Peggy trailed off at this point. I didn’t know quite what to say to a mother telling me about the end of her son’s life; I concurred that Jake’s passion was clear and distinct in my mind too (it still is). I will further attest now to Jake’s uncommon sincerity and advance my suspicion that in his unbounded joie de vivre, he was well-influenced.

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eggy trailed off at this point. I didn’t know quite what to say to a mother telling me about the end of her son’s life; I concurred that Jake’s passion was clear and distinct in my mind too (it still is). I will further attest now to Jake’s uncommon sincerity and advance my suspicion that in his unbounded joie de vivre, he was well-influenced.

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A successful BMT can stave off the anemic symptoms and prevent bone marrow failure, the most common cause of death for FA patients. Though even a successful BMT cannot lower a patient’s increased chances at developing cancer (another symptom of FA patients who make it into adulthood). Jake’s family redoubled their efforts to find him a donor. They held drives in Portland, Seattle, and Spokane to get more people on the blood marrow registry, desperate to find that 1/50,000 match.

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In a vague way I knew all of this before the interview. I remember hearing that Jake was sick; I remember when everyone from the neighborhood was getting their blood tested to see if they would miraculously be the life-saving match. I attended the funeral that came at the end of the failed search for marrow. But before meeting with Peggy I didn’t remember the name of the disease. I knew it was genetic, and that it affected his blood. I realized it was the same thing that the president of the University of Oregon had lost children to. But that was about it. I didn’t know the specifics. As Peggy gave me the story in more detail (but certainly not as much detail as she saves for some) I tried, somewhat ineffectively, to stifle my tears, so as to levitra kaufen appear professional and non-exploitive. Later, when I was working on the story, I dropped that pretense.

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