A Miracle Friendship: The Stranger That Saved My Life
She'd only read the stranger's name in a book; she couldn't have known the woman would save her life—could she?
Tahoma (left) and Deborah in Philadelphia, December 2003.
Out of the blue one day in July 2002, Philadelphia psychotherapist Deborah Anna Luepnitz, PhD, received a phone message from a stranger. Tahoma Ironfeather was calling from a small island off the coast of Charleston, South Carolina, and said she needed to speak to Deborah after reading a book called The Last American Man.
Deborah was convinced Tahoma had made a mistake in contacting her but decided to return the call. Her efforts to clear up the confusion only made matters murkier. Was Tahoma calling in reference to Deborah's own just-published book, Schopenhauer's Porcupines, a study of intimacy and its dilemmas? Nope, Tahoma answered. Well then, perhaps Tahoma was trying to reach Deborah's friend and Last American Man author, Liz Gilbert? No. Gilbert's charismatic, nature-loving, self-involved subject, Eustace Conway, Tahoma explained, was a perfect double for Ronnie, a man who was breaking her heart. Oh, Deborah said, perhaps Tahoma wished to speak with Eustace? "Hell, no," Tahoma said. "I just spent three years with somebody like that—I don't want Eustace; I want some understanding."
Tahoma, a nurse practitioner and certified boat captain, had heard a radio interview with Gilbert, rushed out to buy the book, and devoured every page. The similarities between Eustace and Ronnie took Tahoma's breath away, and the thoughtful passages analyzing Eustace's psyche shed much-needed light on her feelings for Ronnie. Tahoma felt a second presence in those passages and, after sleuthing through the dedication and acknowledgments (both of which mentioned Deborah), decided she knew who it was. Tahoma, whose Chickasaw ancestors had great respect for the powers of the unseen, felt a ping each time she read Deborah's name. Call it a vibe, call it a voice, call it a moment of telepathic transcendence—Tahoma had learned to pay attention whenever it came along.
Deborah was convinced Tahoma had made a mistake in contacting her but decided to return the call. Her efforts to clear up the confusion only made matters murkier. Was Tahoma calling in reference to Deborah's own just-published book, Schopenhauer's Porcupines, a study of intimacy and its dilemmas? Nope, Tahoma answered. Well then, perhaps Tahoma was trying to reach Deborah's friend and Last American Man author, Liz Gilbert? No. Gilbert's charismatic, nature-loving, self-involved subject, Eustace Conway, Tahoma explained, was a perfect double for Ronnie, a man who was breaking her heart. Oh, Deborah said, perhaps Tahoma wished to speak with Eustace? "Hell, no," Tahoma said. "I just spent three years with somebody like that—I don't want Eustace; I want some understanding."
Tahoma, a nurse practitioner and certified boat captain, had heard a radio interview with Gilbert, rushed out to buy the book, and devoured every page. The similarities between Eustace and Ronnie took Tahoma's breath away, and the thoughtful passages analyzing Eustace's psyche shed much-needed light on her feelings for Ronnie. Tahoma felt a second presence in those passages and, after sleuthing through the dedication and acknowledgments (both of which mentioned Deborah), decided she knew who it was. Tahoma, whose Chickasaw ancestors had great respect for the powers of the unseen, felt a ping each time she read Deborah's name. Call it a vibe, call it a voice, call it a moment of telepathic transcendence—Tahoma had learned to pay attention whenever it came along.
Before the internet, tracking down Deborah would have been a challenge, since Tahoma lives on rustic Edisto Island, where many residents willingly forgo cable TV, dry cleaners, Starbucks, and a sewer system. But Tahoma had a modem, and Deborah—an author of three books, eloquent speaker, and member of the clinical faculty of the department of psychiatry at the University of Pennsylvania School of Medicine—was easily Googled.
Tahoma asked Deborah for help in understanding her own situation; they agreed to a onetime telephone consultation so that Tahoma could close her own book, the one with Ronnie as its main character. On the appointed day, they spoke frankly but also laughed at the funny bits that inevitably hover on the edge of heartbreak, and at the end of their hour Tahoma felt the clarity and closure she'd sought.
In September 2002, two months later, Tahoma felt woozy. Maybe it was the flu, she thought, or maybe this dull-mindedness was what it was like to get old—she was 48. Then she started having fleeting blackouts. She tried to count the episodes but kept losing track. One morning she woke up on the floor beside her bed with extreme head pain. By the time the ambulance came, she was losing her vision.
Tahoma had suffered a grand mal seizure, and she spent the next two weeks in and out of hospitals in Charleston. Biopsy results indicated a rare, malignant brain tumor that had progressed to stage 3 (out of 4). Tahoma's prognosis was, simply put, crappy: The tumor was inoperable—too embedded in the brain tissue that controls speech, sight, hearing—and she would most likely die in as little as two months.
Two weeks after the biopsy, Tahoma sent Deborah an e-mail titled "Tahoma Update." She told Deborah of the tumor and the prognosis. Deborah wrote back asking if there was something she could do.
Tahoma recognized Deborah as both a talented counselor and an abundantly gracious person. Tahoma figured most people would have met that initial voice message with more of a "Screw you—get out of here!" than a return call. "Look," Tahoma responded, "I'm really sick. It seems like I'm going to die, and I want your support."
Deborah knew saying yes would eventually lead to great sadness and pain, but she also felt honored to share in such a momentous part of another person's life. She took a deep breath and said she'd be there for Tahoma. Deborah's commitment stemmed from a mix of generosity and curiosity: She was struck that Tahoma seemed to have no bitterness about her plight. "I would have been very mad at God," Deborah says, "but Tahoma never veered from her position that the illness was a gift. I just fell for her. I melted, and I felt I was to learn something, too, about the hard edges of my psyche."
For the next few months, Deborah sent an e-mail or a card or left a phone message every day. Tahoma couldn't always respond. Six weeks of radiation had knocked her on her butt, and she grew weaker and more nauseated with each treatment. She stopped working and lay on her couch contemplating life and death.
As a spiritual companion, Deborah proved to be an excellent choice. She offered insight, compassion, and humor, and most important, she did not avoid talking about Tahoma's impending death.
"What's it like to have so little time?" Deborah asked at one point.
"Actually," Tahoma answered, "all I have now is time." Tahoma's life before the tumor was nonstop and jam-packed, like a Chinese acrobat spinning countless plates in the air. Now she relished the chasms of time and space each day brought. Tahoma's perspective reminded Deborah of a Roman philosopher. "Seneca said there are two choices in life," Deborah explains. "You can be led by fate, or you can be dragged by it. Tahoma ain't being dragged anywhere."
Tahoma asked Deborah for help in understanding her own situation; they agreed to a onetime telephone consultation so that Tahoma could close her own book, the one with Ronnie as its main character. On the appointed day, they spoke frankly but also laughed at the funny bits that inevitably hover on the edge of heartbreak, and at the end of their hour Tahoma felt the clarity and closure she'd sought.
In September 2002, two months later, Tahoma felt woozy. Maybe it was the flu, she thought, or maybe this dull-mindedness was what it was like to get old—she was 48. Then she started having fleeting blackouts. She tried to count the episodes but kept losing track. One morning she woke up on the floor beside her bed with extreme head pain. By the time the ambulance came, she was losing her vision.
Tahoma had suffered a grand mal seizure, and she spent the next two weeks in and out of hospitals in Charleston. Biopsy results indicated a rare, malignant brain tumor that had progressed to stage 3 (out of 4). Tahoma's prognosis was, simply put, crappy: The tumor was inoperable—too embedded in the brain tissue that controls speech, sight, hearing—and she would most likely die in as little as two months.
Two weeks after the biopsy, Tahoma sent Deborah an e-mail titled "Tahoma Update." She told Deborah of the tumor and the prognosis. Deborah wrote back asking if there was something she could do.
Tahoma recognized Deborah as both a talented counselor and an abundantly gracious person. Tahoma figured most people would have met that initial voice message with more of a "Screw you—get out of here!" than a return call. "Look," Tahoma responded, "I'm really sick. It seems like I'm going to die, and I want your support."
Deborah knew saying yes would eventually lead to great sadness and pain, but she also felt honored to share in such a momentous part of another person's life. She took a deep breath and said she'd be there for Tahoma. Deborah's commitment stemmed from a mix of generosity and curiosity: She was struck that Tahoma seemed to have no bitterness about her plight. "I would have been very mad at God," Deborah says, "but Tahoma never veered from her position that the illness was a gift. I just fell for her. I melted, and I felt I was to learn something, too, about the hard edges of my psyche."
For the next few months, Deborah sent an e-mail or a card or left a phone message every day. Tahoma couldn't always respond. Six weeks of radiation had knocked her on her butt, and she grew weaker and more nauseated with each treatment. She stopped working and lay on her couch contemplating life and death.
As a spiritual companion, Deborah proved to be an excellent choice. She offered insight, compassion, and humor, and most important, she did not avoid talking about Tahoma's impending death.
"What's it like to have so little time?" Deborah asked at one point.
"Actually," Tahoma answered, "all I have now is time." Tahoma's life before the tumor was nonstop and jam-packed, like a Chinese acrobat spinning countless plates in the air. Now she relished the chasms of time and space each day brought. Tahoma's perspective reminded Deborah of a Roman philosopher. "Seneca said there are two choices in life," Deborah explains. "You can be led by fate, or you can be dragged by it. Tahoma ain't being dragged anywhere."
On the fourth Monday in December, Tahoma was at the tail end of radiation treatments. Up in Philadelphia, Deborah hiked over to her gym, settled into the recumbent bicycle, and read the local paper, as usual, browsing until she reached this headline, buried in the health and science section of The Philadelphia Inquirer: TREATMENT SHOWS PROMISE IN TWO FORMS OF BRAIN CANCER.
Here was an experimental protocol, the only one of its kind in the world, at Drexel University's College of Medicine, a facility 20 minutes away from where she was pedaling. At Drexel radioactive iodine was attached to antibody extracts produced in mice and injected into patients. The antibodies had a particular affinity for tumor cells and so acted as an escort service, keeping the highly charged radiation from traveling to healthy cells in the body and brain. Fewer than 11,000 people are diagnosed with these types of cancer, but those who had undergone the MAb425 treatment were showing impressive results.
For an instant, Deborah felt hope. But then reason won out. "I thought, Oh, surely Tahoma knows about this," Deborah remembers. "She has been visiting brain tumor sites on the Internet, she has a great group of doctors—it would be impossible that she doesn't know." Also, what were the chances Tahoma had the "right" cancer?
Deborah finished biking, threw the paper in the trash, and headed for the showers. On her way out of the locker room, she reconsidered. She fished the paper from the trash, and when she got home, she checked an old e-mail to see what cancer Tahoma had. Ping. It was astrocytoma with anaplastic foci, one of the two in the study.
That night Deborah sent her daily e-mail to Tahoma, mentioning the article almost in passing. "I'm sure you know about this MAb drug," Deborah wrote.
"No," Tahoma answered.
The next day, Christmas Eve, Tahoma called Drexel. The clinic had shut down for the holidays, but a kind receptionist encouraged her to call back after the New Year.
Tahoma waited two weeks—tick, tick, tick—and called. Jackie Emrich, PhD, the lead author of the study's report, picked up the phone. She and Tahoma had a long talk, which led to good and bad news. Yes, Tahoma could be treated with MAb425, but each dose took an hour and a half of lab time to make, and the lab was getting calls from desperate people all over the world. Tahoma would be number 64 on the waiting list—not a reassuring position when your life expectancy is about the same number of days. On the other hand, Tahoma was thrilled that there was a list to be on. She also realized she needed time to recuperate from her weeks of radiation before trying something else.
You can tell a lot about Tahoma by her mottoes: "Try to understand" and "Keep moving." She doesn't own a lot of stuff, she doesn't earn a lot of money—she finds richness in canoeing and fishing and providing healthcare to people who need it even if they can't pay for it. Good for the spirit; not so good for the bank balance. And as anyone who's been around cancer knows, this disease is not a cheap date.
What Tahoma does have a wealth of, however, is some seriously good luck. "I could fall in shit and find a diamond," she would tell Deborah. Tahoma intended to hit the top of Drexel's waiting list, and she called Deborah to ask if she could stay with her in Philadelphia during the two-week treatment. "Hmm," Deborah thought. She couldn't be happier about the prospect of the trip, but her one-bedroom apartment doubled as her office, and Tahoma couldn't exactly settle into the futon couch that served as the patients' chair. Deborah offered to underwrite a hotel stay as a sort of guest room away from home.
Here was an experimental protocol, the only one of its kind in the world, at Drexel University's College of Medicine, a facility 20 minutes away from where she was pedaling. At Drexel radioactive iodine was attached to antibody extracts produced in mice and injected into patients. The antibodies had a particular affinity for tumor cells and so acted as an escort service, keeping the highly charged radiation from traveling to healthy cells in the body and brain. Fewer than 11,000 people are diagnosed with these types of cancer, but those who had undergone the MAb425 treatment were showing impressive results.
For an instant, Deborah felt hope. But then reason won out. "I thought, Oh, surely Tahoma knows about this," Deborah remembers. "She has been visiting brain tumor sites on the Internet, she has a great group of doctors—it would be impossible that she doesn't know." Also, what were the chances Tahoma had the "right" cancer?
Deborah finished biking, threw the paper in the trash, and headed for the showers. On her way out of the locker room, she reconsidered. She fished the paper from the trash, and when she got home, she checked an old e-mail to see what cancer Tahoma had. Ping. It was astrocytoma with anaplastic foci, one of the two in the study.
That night Deborah sent her daily e-mail to Tahoma, mentioning the article almost in passing. "I'm sure you know about this MAb drug," Deborah wrote.
"No," Tahoma answered.
The next day, Christmas Eve, Tahoma called Drexel. The clinic had shut down for the holidays, but a kind receptionist encouraged her to call back after the New Year.
Tahoma waited two weeks—tick, tick, tick—and called. Jackie Emrich, PhD, the lead author of the study's report, picked up the phone. She and Tahoma had a long talk, which led to good and bad news. Yes, Tahoma could be treated with MAb425, but each dose took an hour and a half of lab time to make, and the lab was getting calls from desperate people all over the world. Tahoma would be number 64 on the waiting list—not a reassuring position when your life expectancy is about the same number of days. On the other hand, Tahoma was thrilled that there was a list to be on. She also realized she needed time to recuperate from her weeks of radiation before trying something else.
You can tell a lot about Tahoma by her mottoes: "Try to understand" and "Keep moving." She doesn't own a lot of stuff, she doesn't earn a lot of money—she finds richness in canoeing and fishing and providing healthcare to people who need it even if they can't pay for it. Good for the spirit; not so good for the bank balance. And as anyone who's been around cancer knows, this disease is not a cheap date.
What Tahoma does have a wealth of, however, is some seriously good luck. "I could fall in shit and find a diamond," she would tell Deborah. Tahoma intended to hit the top of Drexel's waiting list, and she called Deborah to ask if she could stay with her in Philadelphia during the two-week treatment. "Hmm," Deborah thought. She couldn't be happier about the prospect of the trip, but her one-bedroom apartment doubled as her office, and Tahoma couldn't exactly settle into the futon couch that served as the patients' chair. Deborah offered to underwrite a hotel stay as a sort of guest room away from home.
Tahoma arrived on March 24, 2003, the night before her first MAb425 treatment. Deborah's nerves were on edge, thrill and anxiety overlapping, and she arrived at Tahoma's hotel room armed with a toothbrush, pj's, a bag of fresh fruit, and no idea what to say. The door opened, they whooped each other's names, and the five-foot-tall Tahoma leaped at the statuesque Deborah, arms open for a hug. This powerhouse of a woman Deborah had been speaking to all these months was tiny. "You're just a little fidget!" Deborah said.
The women fell into slumber party mode instantly. They shared a slice of double-fudge cake from room service and watched TV, taking turns analyzing David Letterman's psyche. They talked about exercise and men and politics. The hotel arrangement turned out to be prudent after treatments made Tahoma dangerously radioactive; when lab workers ran a Geiger counter over her head and bladder, it sounded a furious bang bang bang. Nonetheless, throughout Tahoma's stay, whenever Deborah didn't have appointments, the women were inseparable. Tahoma's problems had brought them together, but Deborah found herself confiding things she'd never told another soul.
One more thing cemented their bond: The treatment worked. By April of 2004, when this article went to press, Tahoma had lived 17 months beyond her diagnosis. She showed no signs of tumor in follow-up scans and was back to riding horses, working on a friend's farm, and filling in for other nurse practitioners. No one uses the word cure with this kind of cancer, but as Tahoma says, "I've exceeded my expiration date."
The treatment came with its share of drawbacks. Tahoma sustained some neurocognitive damage. "When I get tired, I may start stuttering," she says, "and sometimes I can't do math. I'm not the most ego-driven person, but there are certain things, like my ability to remember things, that were a big loss for me. But really, death versus having a few neurological deficits—I'll take the deficits."
And she needs speech therapy. The trouble is, her insurance has run out. And the South Carolina Vocational Rehabilitation Department won't waste resources on someone with a diagnosis of "terminal." She's looking for an alternative she can pay for herself.
Another twist is that Tahoma spent all that time preparing for death—and didn't die. She was jolted, as many people with terrible diseases are, into a greater appreciation for all the world has to offer. "That brightness of going 'Wow, I almost died' is starting to fade," Tahoma says. "The intellectual part of me understands that's appropriate, but the emotional part doesn't want to lose it."
Both she and Deborah see the story of their friendship as one of blessings and miracles and magic. Deborah also sees it as a testimonial to the power of the written word...and something more. "What can we call the thing that makes a person return a call to an eccentric stranger?" she asks. "Is it risk taking? Is it something spiritual—that sympathy outside us that bends the path toward we know not what? It is both of those, but the third thing is a faith in the goodness of other women. Sisterhood is a watchword of feminism, of course, and I learned it first in a Catholic girls' school in Cleveland, where the world was run by powerful women who—untrue to stereotype—were loving and reliable and fun. They taught us, against the grain, to form strong bonds with one another. I've loved a number of men in my life, but the thing that makes me feel safe is my trusty gaggle of girlfriends."
Ping.
Lise Funderburg is a writer in Philadelphia.
Believe in the Unexpected
The women fell into slumber party mode instantly. They shared a slice of double-fudge cake from room service and watched TV, taking turns analyzing David Letterman's psyche. They talked about exercise and men and politics. The hotel arrangement turned out to be prudent after treatments made Tahoma dangerously radioactive; when lab workers ran a Geiger counter over her head and bladder, it sounded a furious bang bang bang. Nonetheless, throughout Tahoma's stay, whenever Deborah didn't have appointments, the women were inseparable. Tahoma's problems had brought them together, but Deborah found herself confiding things she'd never told another soul.
One more thing cemented their bond: The treatment worked. By April of 2004, when this article went to press, Tahoma had lived 17 months beyond her diagnosis. She showed no signs of tumor in follow-up scans and was back to riding horses, working on a friend's farm, and filling in for other nurse practitioners. No one uses the word cure with this kind of cancer, but as Tahoma says, "I've exceeded my expiration date."
The treatment came with its share of drawbacks. Tahoma sustained some neurocognitive damage. "When I get tired, I may start stuttering," she says, "and sometimes I can't do math. I'm not the most ego-driven person, but there are certain things, like my ability to remember things, that were a big loss for me. But really, death versus having a few neurological deficits—I'll take the deficits."
And she needs speech therapy. The trouble is, her insurance has run out. And the South Carolina Vocational Rehabilitation Department won't waste resources on someone with a diagnosis of "terminal." She's looking for an alternative she can pay for herself.
Another twist is that Tahoma spent all that time preparing for death—and didn't die. She was jolted, as many people with terrible diseases are, into a greater appreciation for all the world has to offer. "That brightness of going 'Wow, I almost died' is starting to fade," Tahoma says. "The intellectual part of me understands that's appropriate, but the emotional part doesn't want to lose it."
Both she and Deborah see the story of their friendship as one of blessings and miracles and magic. Deborah also sees it as a testimonial to the power of the written word...and something more. "What can we call the thing that makes a person return a call to an eccentric stranger?" she asks. "Is it risk taking? Is it something spiritual—that sympathy outside us that bends the path toward we know not what? It is both of those, but the third thing is a faith in the goodness of other women. Sisterhood is a watchword of feminism, of course, and I learned it first in a Catholic girls' school in Cleveland, where the world was run by powerful women who—untrue to stereotype—were loving and reliable and fun. They taught us, against the grain, to form strong bonds with one another. I've loved a number of men in my life, but the thing that makes me feel safe is my trusty gaggle of girlfriends."
Ping.
Lise Funderburg is a writer in Philadelphia.
Believe in the Unexpected
Photo: Noah Greenberg
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