KIM LAWTON, anchor: The Obama Administration launched a new initiative this week encouraging Americans to help fight hunger in their communities. The campaign is called  “United We Serve: Feed a Neighbor.” It urges people to donate money to local soup kitchens and food banks and also to volunteer their time and talents. The effort comes amid new government reports that hunger is on the rise in the US. Forty-nine million Americans struggled to put food on the table this past year—that’s an increase of 13 million—and a record number of Americans, 36 million, now receive food stamp assistance.

Joining me with more on all of this is Candy Hill, a senior vice president at Catholic Charities USA. Candy, it seems like this time of year, every year, we hear appeals from groups saying “Oh people are hungry, you need to give.” What makes this year different?

CANDY HILL, Catholic Charities: Well, we certainly are seeing such an increase, and new people that have never come to Catholic Charities for services before. Some of them are even our donors, and some of them are our former board members, so we see a real crisis in the number of people coming and who need assistance this year over the other years that we’ve been in business.

LAWTON: And there’s been some talk of food insecurity, I mean we’re not talking about starving in the streets, but we’re talking about people who are just having a harder time feeding their families?

Candy Hill, Catholic Charities USA

HILL: Yes, and I think when we talk about food insecurity we’re really talking about people not having food for three meals a day, so we find parents who are scrimping or not having a meal themselves in order to feed their children, and seniors who are making choices between whether they buy medicine or feed themselves, and in a country as great as this country we shouldn’t have people doing that.

LAWTON: And this is a function of the economy and all of the repercussions of that?

HILL: I think this is a perfect storm. We see the economy, and the people that we serve certainly were struggling before the collapse of Wall Street, but they were struggling first and will be the last to recover in this recovery.

LAWTON: And to what extent is it difficult in these tough economic times to make appeals for groups like yours, to say to people, give money to hungry people when individuals might be thinking, you know, I don’t know how I’m going to feed my own family?

HILL: Exactly. Well, what I would say as Americans we’ve always risen to the occasion, and this is one of these occasions. Our neighbors are suffering and we need to dig deep into our own pockets. The government has a role to play, all of us have a role to play, and we need to reach out and help each other during this really tough time.

LAWTON: Well, speaking of the government’s role, the U.S. government is urging people to give more in this new initiative, but is that enough? I mean, is it enough for individuals to give $20, a $100 or whatever, or do we need systematic changes in policy?

HILL: Well, I think long term we need systematic changes, but you know that’s a long term strategy and right now we have a short term problem, and so we need people to give and we also need the government to step up and do its part as well.

LAWTON: Are you pleased that the administration is having this initiative?

HILL: Absolutely, because I think it brings, it highlights always when the administration speaks on something and gives information, it helps connect to the things that we’re doing on the ground, and so this initiative, certainly, I think will highlight the need, but also the really creative things that are happening across America to try and meet the needs of individual people.

LAWTON: Yours is a faith-based organization. A lot of groups are trying to help the hungry. What is the specific role for religious groups and those from the faith community?

HILL: Well certainly we have a 2,000-year tradition that we’re supposed to feed the hungry and we take that very seriously and so we’ve been doing this for decades across the country and we see it as a moral issue, that people shouldn’t have to go hungry in a country as rich as ours, and we’re going to continue to try and meet the needs of people in local communities across this nation.

LAWTON: Again, we hear all the time people are hungry, people are hungry, the poor are always with us. Are there solutions? Is it possible to end hunger?

HILL: I absolutely believe it, and certainly the government is calling on that and Congress is as well. We have to think creatively. We have to think about 21st century solutions to 21st century problems, and the safety net in this country is badly torn and weakened, and we need to not just fix it. A repair is not sufficient. We really need to think about how do we eliminate the need for programs like food stamps, and like donations to feed the hungry through a food bank or a soup kitchen, and if we have the political will to do it in this country we can change this. You know, Bobby Kennedy forty years ago called attention in the Mississippi Delta to children being hungry, and yet today you and I are sitting here having the same conversation four decades later. We just need to rise to the occasion and have the political will to change it.

LAWTON: All right, Candy Hill, thank you very much.

HILL: Thank you as well.

Click here to view the original July 24, 2009 story.

JANE STROM: Happy Birthday.

AL (Jane Strom’s father): Thank you.

JANE STROM: Do you know how old you are?

AL: Yeah.

JANE STROM: How old are you?

AL: I don’t know.

JANE STROM: How old are you? You are 90, 90 years old…

LUCKY SEVERSON (Contributing Correspondent): Not long ago, Dr. Joel Strom and his wife, Jane, were so convinced that Jane’s father was close to death, notwithstanding the attention he was receiving from ten specialists, they put him in a hospice, and then he got better.

DR. JOEL STROM (Cardiologist and Professor, University of South Florida Medical School): Part of it was that he had one person who took care of him. They cut out all the referrals because they didn’t expect him to live long, and they cut out all the medicines.

SEVERSON: Dr. Strom is a cardiologist and a professor at the University of South Florida Medical School. Like every doctor we spoke with, Strom is fed up with the health care system.

DR. STROM: It’s not a broken system. There is no system. Medical care is haphazard. Medical care is disorganized. There are pockets of superb care. There are pockets of very mediocre care.

SEVERSON: If Medicare costs are any measure, Miami-Dade County should have the best senior care in the country. The federal health program spends over $16,000 a year per patient. That’s about double the 2006 national average. Brian Keeley is the CEO of Baptist Health South Florida, the largest nonprofit health care system in that part of the state. He says huge Medicare costs do not translate to better health care.

BRIAN KEELEY (CEO, Baptist Health South Florida): We know that more can be injurious to people, and more health care services, more aggressively providing those services, can result in lower levels of care.

SEVERSON: He says there are several factors that bloat health care costs in the Miami area.

KEELEY: There’s a huge imbalance between the number of specialists and primary care physicians, and we have such a high percentage of specialists down over here, they utilize resources more, technology more.

SEVERSON: Dr. Strom, a specialist himself, says one reason there is such a shortage of primary care physicians is that Medicare doesn’t reimburse them enough for patient visits.

DR. STROM: If you spend a lot of time with a patient you will starve to death as a physician because you will only get paid for a certain amount of time. In fact, a lot of physicians will actually steer patients to their offices to have tests performed, because they collect both the professional component, and if they own the equipment, the technical component.

SEVERSON: Dr. Gloria Weinberg is a geriatrician and chair of the department of medicine at Mount Sinai Hospital in Miami Beach. She says when young doctors, fresh out of medical school and burdened with school loans, discover how much less a primary physician earns, they choose a specialty where they can make more money.

DR. GLORIA WEINBERG (Geriatrician and Chair, Department of Medicine, Mount Sinai Medical Center): If you look at the reimbursement, you are going to come away after paying expenses, if you are lucky, with $40 or $50 an hour. That’s not going to help the youngsters go into a field of medicine and pay off loans and do everything else that needs to be done.

SEVERSON: Here in Miami, a typical senior citizen will see a doctor 106 times during the last 2 years of their lives. Not just one doctor, several—specialists who will then prescribe a battery of expensive tests and procedures: MRIs, ultrasounds, CAT scans, and an astonishing assortment of drugs. It’s because that’s the kind of care patients around here often demand. Dr. Weinberg:

DR. WEINBERG: Patients are very sophisticated. They come, and they say, “I have a headache.” You take a headache history. They are not satisfied if you say, “You don’t need a scan.” They want a scan. If you are pushed, and you are suspicious enough, and perhaps you suggest a CT, which is less expensive than an MR, some of them will come to you and say, “I want an MR. I hear it’s more sensitive.” We have had patients in our center tell us, “If you don’t do what I’m asking I’m going to sue you.”

SEVERSON: The threat of lawsuits forces many doctors to practice defensive medicine, ordering more tests and procedures to protect themselves from being sued. Health care professionals here cited malpractice suits as another factor behind spiraling costs, and Medicare fraud in South Florida, particularly in the home health care industry, has been described as rampant.

KEELEY: The Miami Herald reported about a month ago that the FBI and CMS [Centers for Medicare & Medicaid Services] indicated that fraud was about $2.5 billion per year in Miami-Dade County. That, in and of itself, is a huge, huge difference, comparing our cost structure to the rest of the country.

SEVERSON: About 50 million Americans are uninsured, and that includes 30 percent of the population around Miami. Many of that number are undocumented and in the US illegally. Whatever their status, most who need care end up in a hospital emergency room where, by law, they cannot be refused treatment.

DR. WEINBERG: It’s our ethical responsibility to treat that patient as we would any other. That patient can go down the path of having a cardiac catheterization, ultimately having a pacemaker, a defibrillator at $30,000, ongoing medical care, and then we face the problem, when we discharge the patient, where does the patient get the follow-up care, and the hospital doesn’t get reimbursed for it.

SEVERSON: Perhaps the biggest chunk of Medicare expenditures, something like 30 percent, goes to end-of-life care for aging Americans. Professor Anita Cava directs the University of Miami business ethics program. She says Americans need to rethink the way we look at end-of-life medical care.

PROFESSOR ANITA CAVA (Director, University of Miami Business Ethics Program): I think we in the United States really need to reconsider our relationship with end of life and to realize it’s a natural process and that perhaps ending life in a more humane and comfortable way at home with family, rather than trying to prolong it for another day or week or month, is perhaps the best way to go.

SEVERSON: Joe Gasperovich would take exception to the ethical argument for withholding expensive medical treatment for aging, failing Americans. He was born in 1919 and would prefer to prolong his life as long as possible.

SEVERSON (speaking to Joe Gasperovich): If they say we need to go do a $1,000 CAT scan, is there a point, an age you reach where you should say no, I’ve lived 90 years?

MR. GASPEROVICH: No, I want more.

SEVERSON: You want more years?

MR. GASPEROVICH: Everybody—nobody want to die.

SEVERSON: Dr. Weinberg says the decisions about the ethics of distributive justice for society as a whole are often much more difficult when the doctor is meeting with a patient one-on-one.

DR. WEINBERG: The health care dollars, an inordinate amount, go to taking care of people in the last 6 months of their lives. But how do you know when those last 6 months are? You have a person who has worked all their life, paid taxes, done very well, and now they are 80, and they have a heart attack. That may be the person who lives 10 or 15 more years. Are we going to say no just because of age? That’s a very, very slippery slope.

SEVERSON: There is a huge ethical discussion about who should make these end-of-life decisions—the patient, the family, doctors, the government? Brian Keeley says some decisions are easier to make. For instance, Medicare should only reimburse for treatments and drugs that are known to work.

KEELEY: It ought to be evidence-based. If something is proven not to work, I don’t think the federal government ought to be paying for it. I don’t think anybody ought to be paying for it, except for the private patient.

SEVERSON: Dr. Weinberg says too many patients receive expensive treatments and surgery in their final years that very likely won’t prolong their life.

DR. WEINBERG: So if you have an Alzheimer patient who, your own belief may be, it’s time to let this person go naturally, and the family is telling you, “I’m the surrogate, and I’m insisting that a feeding tube be put in,” you cannot make the decision not to put the feeding tube on your own, even though you think it’s futile care, at least in the state of Florida.

SEVERSON: Dr. Weinberg says her 95- year-old mother has a living will that stipulates she will not be kept alive on a ventilator. Brian Keeley says preparing for end of life is not something that’s culturally accepted in South Florida.

KEELEY: Other parts of the country where people plan for end-of-life care, with the use of hospices and palliative care and what have you—down here there’s less usage for that, so people go to die in the hospitals.

SEVERSON: Everyone seems to agree that health care reform is urgently needed and that health care should be a right and not a privilege and that it should extend to everyone. They also agree that South Florida is a good place to start.

For Religion & Ethics NewsWeekly I’m Lucky Severson in Miami.

Note: Since this story first aired in July 2009, Dr. Joel Stroms’ father-in-law, Al Godin, passed away.

REV. CHRISTINE WILEY (Covenant Baptist Church): We pray for health, O God, that you would pour your spirit into them and heal their bodies, O God.

LUCKY SEVERSON, correspondent: Reverend Christine Wiley has been ministering to AIDS patients in Washington, DC since the early1980s. Back then people were dying from a disease they didn’t understand and had no idea how it was spreading. Reverend Wiley first met AIDS patients when she allowed the health clinic across the street to move into her church when the clinic’s roof fell in.

WILEY: What I found was a profound privilege of being able to work with people who had contracted this disease, and being able to talk with them to help them get to a place where they had hope and understood that they were still loved by God.

Rev. Christine Wiley

SEVERSON: Twenty years later, Reverend Wiley is still preaching and teaching about HIV-AIDS, which we now know a lot about. We know that it’s preventable and treatable, and yet it has reached epidemic levels in the nation’s capital. The most recent statistics are sobering. Three percent of local residents have HIV or AIDS—triple the number that is generally considered a “severe” epidemic. But among African-Americans residents, the overall rate is above four percent, which is higher even than parts of West Africa. And among the District’s black men the infection rate is even more alarming—almost seven percent. Authorities are worried that the number is actually higher because so many residents are spreading the virus without knowledge they’re infected. This is Bishop Rainey Cheeks at the Inner Light Ministries Sunday worship service.

BISHOP RAINEY CHEEKS (Inner Light Ministries): We live in a city that has the highest infection rate in the country. We live in Ward 8, and it has the highest infection rate in the city, and here we still operate in a state of ignorance, and the Scripture tell us “my people perish for lack of knowledge.”

SEVERSON: Bishop Cheeks is not your typical preacher. He is openly gay and has been HIV-positive for 25 years.

CHEEKS: People would say, what would Jesus do? And I say stop asking that question. Do what he did. Heal people. Love people. He said feed, clothe, shelter people. That is all HIV is asking us to do.

SEVERSON: The church has long been the most influential institution in the African-American community. But Bishop Cheeks says when it comes to AIDS, too many black pastors have been silent, or preaching when they should have been teaching.

CHEEKS: Throughout our history, the information has always been disseminated through the church. Imagine if all the churches on Sunday morning gave just the facts and where they could go get help. How many people would we reach?

Bishop Rainey Cheeks

WILEY (preaching): Have you ever felt persecuted just for living, just for being who you are?

SEVERSON: At the Covenant Baptist Church, Rev. Wiley, who has a doctorate in pastoral psychotherapy, tells her members who have the disease that they are not sinners, that God loves them, and she explains ways to safeguard against the virus to anyone who will listen. Some think the epidemic has passed and don’t want to listen. Some don’t want to know. That’s why Rev. Wiley offers weekly AIDS testing like this, right in church. She says she discovered that many African Americans do not view the black church as a safe place to get counseling about AIDS.

WILEY: There is such a heavy stigma. Then often it’s not talked about. And, of course, within the context of the church one of the things that is difficult is interpretation of Scripture. Many persons within the black church, generally speaking, are very conservative. We find that the issue of sex is not talked about at all in many, many churches, and so if you don’t talk about sex it’s difficult to even talk about risky behavior.

SEVERSON: Bishop Harry Jackson’s Hope Christian Church is typical of many black churches, if not most. Many members here consider drug abuse, premarital sex, and homosexual activity as sins.

BISHOP HARRY JACKSON (Hope Christian Church): Black clergy typically are very conservative socially, and they are much more liberal in terms of other issues. But the heart of the black church is the preaching, and the preaching has to be from the Bible, and that biblical message has been the source of the conservatism of the church, and it’s also the strength.

JACKSON (speaking at rally): And I would rather be biblically courageous than politically correct.

SEVERSON: Bishop Jackson has been a leading spokesman in the District in favor of marriage only between a man and a woman. He agrees that black pastors have not done enough, but sees the problem more as the breakup of the black family.

JACKSON: We haven’t done the preventative work that puts it in the mind of a young teenage girl or boy, hey, you shouldn’t have sex this early. You’re having all the babies out of wedlock, all these things, and I’ve got to take responsibility for it. The only institution that stands between our community and what I’m going to call basically the destruction of family as we know it today is the church.

WILEY: We’ve got to talk about drug addiction. We’ve got to talk about sex. We’ve got to talk about relationships, because women who are heterosexual and have relationships are also having relationships with men who sleep with men.

SEVERSON: Nationwide, the leading cause of HIV-AIDS is still men having sex with men. But here in the District the principal mode of transmission for new cases is heterosexual for both men and women, and 70 percent of those infected are over 40 years old.

CHEEKS: We put condoms out right here in the church on Sunday. You can walk and pick them up right here, and people go, isn’t that a little extreme? Well, what do you call extreme? Saving someone’s life?

SEVERSON: Bishop Jackson remains skeptical about the reliability of condoms and is firmly convinced that abstinence only is the best policy. He blames much of the problem on immoral behavior and the prevailing culture.

JACKSON: The moral message is not being grasped. The culture is shaping much more what happens in the black church. If I say it this way, in all deference to our stars, Beyonce may be listened to more than the bishop.

SEVERSON: And the bishop has no intention of bending his message about the sin of premarital and homosexual sex, although he doesn’t oppose testing and wants his church to do more to help those who are infected.

WILEY: Even with a person who is a conservative we still have to acknowledge that there is a disease in our community, and it has not gotten better. It has gotten worse.

JACKSON: It may be that we’re going to reach people that trust us and trust our interpretation of Scriptures. But if you don’t believe the Gospel as we believe it, maybe you will not feel comfortable coming to us for help, and maybe that’s where someone else has to work, and my point would be we at least need to touch the people we can touch, and I’m not so sure we’re touching them yet.

SEVERSON: On that point they would all agree.

CHEEKS: I’m more concerned with how do we save our community more than I need to be right or any of that. How do we save our community? And then we can have all the other theological debates later on. But right now, we are in trouble.

SEVERSON: For Religion & Ethics NewsWeekly I’m Lucky Severson in Washington.

BOB ABERNETHY, anchor: In 2002, we aired a profile of the young, bestselling poet Mattie Stepanek and his mother Jeni. They both suffered from a rare form of muscular dystrophy. The messages of hope and peace in Mattie’s writings inspired millions of people around the world. Mattie died in 2004, but Jeni is working to keep his memory alive. She talked with Kim Lawton about how her faith gives her the strength to move forward.

KIM LAWTON, correspondent: It’s standing room only at the Border’s Bookstore in Bethesda, Maryland, where Jeni Stepanek is talking about her new book called Messenger. The book is about her son Mattie, the New York Times bestselling inspirational poet who died five years ago at the age of 13. Mattie had a rare form of muscular dystrophy, the same disease that afflicts Jeni. This is the store where Mattie had launched his books, too, and the fact that he’s not here tonight highlights the loss that’s still raw.

JENI STEPANEK: Since he died, I’ve hit some very, very low points. I have had mornings where I’m not quite sure what the sane reason is to bother getting out of bed. I always find one, and if I can’t find one, what I’ve learned is to allow other people to give me a sane reason to get out of bed.

LAWTON: One of Jeni’s biggest reasons for getting out of bed every day is her quest to keep Mattie’s legacy alive. In his short life Mattie wrote six books of poetry and a collection of essays that he collaborated on with Jimmy Carter. He became a friend to the rich and famous and touched millions of people around the world with his message of hope and peace.

MATTIE STEPANEK: God gives me hope that there is something greater than us, something better and bigger than the here and now that can help us live.

LAWTON: Mattie told us in an interview seven years ago that he believed God had a plan for his life.

MATTIE STEPANEK: I feel that God has given me a very special opportunity that I should not let go to waste. I use the gift he has given me.

LAWTON: Jeni says from the time he was just a little boy, Mattie told her God was putting messages in his heart.

JENI STEPANEK: And I began to get concerned, actually, and ask him questions like, “Are you hearing voices? Is God’s voice a man’s voice or a woman’s voice?” And he looked at me like I had lost my mind, and he said, “Mommy, God’s voice is not like this. It’s a message in my heart.”

LAWTON: Mattie believed God wanted him to give voice to those messages, and he did that through his poems, which he called his “heartsongs.” Jeni says there were several basic themes.

JENI STEPANEK: Hope is real, peace is possible, and life is worthy. The best I can understand it is that it really is the universal truth. It’s what Jesus Christ taught us, it’s what Gandhi teaches us, it’s what Martin Luther King teaches us, it’s what any good speaker, any peacemaker teaches us: In giving we shall receive, in doing good, good happens.

LAWTON: Since Mattie died, Jeni has gotten thousands of letters and emails from people who say he continues to inspire them. There’s even a grassroots movement of people who want the Roman Catholic Church to open an official investigation into whether Mattie should be recognized as a saint.

JENI STEPANEK: I have had people who have contacted me to say they believe Mattie has interceded in their lives. They believe that Mattie has healed their child, or touched their spirit, or turned them back to God, or prevented them from suicide.

LAWTON: As the mom of a kid who loved practical jokes and didn’t always make his bed, she finds it all humbling and, a bit overwhelming.

JENI STEPANEK: I feel the responsibility to share with people the truth of my son’s life. What I don’t want people doing is thinking, oh Mattie, you know, and putting him up on a pedestal: he’s a little guru, he was perfect, he never got angry, he never got sad, he only spoke bits of wisdom. I mean, he wasn’t. That’s not who Mattie was.

LAWTON: Jeni chairs a foundation named for Mattie that tries to make his message as accessible as possible. There are school curriculum projects based on Mattie’s writings, and parks like this one in Rockville, Maryland, that has a life-sized statue of Mattie and his beloved service dog, Micah, who is now Jeni’s. Jeni herself has also become an inspiration to many. Mattie was her fourth child to die of the disease that she didn’t even know she was carrying.

JENI STEPANEK: When I was having these children, I did not know I was going to give birth to children with this condition. When I was having children I was apparently healthy, active, running two to five miles a day, coaching and playing sports, working on my first doctoral degree.

LAWTON: She was diagnosed when Mattie was nearly two, after her oldest two children had already died and her third child was also dying from the disease. She and her husband divorced, so her focus became being a single mom.

JENI STEPANEK: So even though you grieve the loss of your child, when there’s still another living child, not that the grief isn’t there, but you have to focus on celebrating life with that child, with the one that’s still alive. When Mattie died, that’s when the grief became so overwhelming, because where do you put your mommy role?

LAWTON: Jeni says her Catholic faith helped her cope, and she says despite some times of questioning God, her faith has grown dramatically.

JENI STEPANEK: I’m very good at, through prayer, giving God a to-do list, all right? Dear God, this is where I need you, and this is how you can meet my needs, and I give God the little to-do list, and I think I began to realize towards the end of Mattie’s life prayer is not just giving God your wishes. It’s asking to bring God into whatever the moments are in my day.

LAWTON: She also has a close circle of friends, chief among them her roommate, Sandy Newcomb, and Sandy’s extended family, whom Mattie called their “kin family.” Jeni says they’ve made all the difference in her life.

SANDY NEWCOMB: I’d like to think in some way that my support of Jeni and Mattie has helped them to be able to do what God wants them to do.

LAWTON: Jeni’s own health continues to deteriorate. She says the most difficult thing is giving up independence and control.

JENI STEPANEK: It’s really hard knowing I will always be the passenger in a car. I will never be driving again. That’s a really, really tough thing when I’m a doer, a giver, a be-er, and you have to be the recipient and call someone and ask them to do something for you. That’s a tough lesson for me.

LAWTON: Although people tell her they’ve felt Mattie’s spirit, Jeni never has.

JENI STEPANEK: And what I would give to have my son come and stand and just say “hi” or “yo,” just say anything, just touch me. But I know that that would be wrong, and I think that my son is wiser than that, because if my son came and spoke to me or touched me, and I knew without doubt this is my son, I so miss him that I’m afraid I’d never emotionally or physically be able to move from that spot.

LAWTON: She says near the end of his life Mattie knew he was dying and tried to prepare her. But she couldn’t accept it.

JENI STEPANEK: It was one of my mommy decisions that I regret. You know, I should’ve just put my arm around him and said that must be really difficult. You must feel very alone. I just, I couldn’t tend to it, and I feel very badly. I will forever feel badly about that. But I don’t think he holds that against me. I think he knew that I was being a mommy.

LAWTON: Still, she says Mattie gave her the hope and faith to move forward.

JENI STEPANEK: He said when I’m gone promise me you will choose to inhale, not breathe merely to exist, and that means finding some worthy reason to move into each next moment, and that’s the most difficult choice I face every single day. But it’s the most worthy choice.

LAWTON: She says she’s learned that it’s not how long you live that matters, but the depth with which you live those days. I’m Kim Lawton in Rockville, Maryland.

Q: Why was it important to you to tell Mattie’s story now?

There were a couple of reasons. One is Mattie’s been gone for five years now, and in those five years more and more good things have come from his life. We have parks and libraries and school curriculum, school curricula growing, the Just Peace Summit where teens come from all over the world to study his message, and I thought, people are so inspired by Mattie’s writings, by Mattie’s message of hope and peace, I thought it mattered that people know who was the child behind that message, that people know the details of Mattie’s life story, particularly because Mattie believed that he was a messenger, that that was his reason for being. and I knew that if something happened to me, nobody would ever know the truth of Mattie’s story. So that was one goal, was to really lay down the details of Mattie’s life. The other reason that I wanted to tell Mattie’s story is people very often come to me and they say, “I’m so inspired. How could I ever be like this child?” And what I wanted people to know is that he was really an ordinary little boy who made extraordinary choices and that each of us can make those same choices, that each of us can live an extraordinary life regardless of the blessings and burdens that are balanced into each day. And I thought that that mattered to share with people so they could identify with Mattie and—you can’t be Mattie, you can’t raise your child to be Mattie, we can’t ever be another human being, but we can use other human beings as our role models, and I wanted to show how plain and simple my son was. He was as witty as he was wise.

Q: You write in the book about how he really did feel that he was a messenger. In what way? How did he feel that? He really felt it came from God.

Mattie first started telling me when he was about three or four years old that God put messages in his heart, and that his reason for being, that God’s role, God’s plan for him was that he was good with words and that he was to shape words around God’s messages and offer them to other people so that they would hear God’s message as well. Now when your three- and four-year-old says this, I thought it was very sweet, I thought he had some nice things to say, but I couldn’t understand—I didn’t really understand about what he was trying to tell me about God putting messages in his heart, and when he hit about four years old, he began doing things like, in the middle of playing, he would drop to his knees, meditate for two minutes, 10 minutes, and then stand up and say, “I need to write this down. I have a message from God, and I need to put words to it.” And I began to get concerned, actually, and ask him questions like, “Are you hearing voices? Is God’s voice a man’s voice or a woman’s voice? High pitched, low pitched?” I didn’t understand what he was saying, and he looked at me like I had lost my mind, and he said, “Mommy, God’s voice is not like this. It’s a message in my heart, and my job is to give words, to give voice to God’s message.” Mattie spent his entire life saying things like this, and I spoke with priests and rabbis and ministers about this, and I have to admit I don’t think I ever, during his lifetime, fully understood his role as a messenger. I believe he believed that he was a messenger for God. I believed that what he was saying and doing was all good.  I could not understand how you could actually hear God’s voice in your heart and use your own words and voice to offer a message to others. I think it’s been more since he died, and the ongoing letters and emails and calls that I get from people who tell me that they remember Mattie from when he was alive, or they’re just learning about Mattie now, and how he continues to inspire them—that is almost like they’re getting a message from God. And I think I’m now beginning to understand that he really—his spirituality and morality were really intertwined, that he did hear messages from God, not in a voice, not in some delusion, but that he was truly inspired with something good, which is God.

Q: What were some of those messages? For people who aren’t familiar with him and his poems, how do you distill the messages?

I think the messages that Mattie offered us from God really fell into two categories, and one could easily be summed up as hope is real, peace is possible, and life is worthy, and he has poem after poem, essay after essay, speech after speech where he discusses, or shares in a literary form, how those look. You know, why hope is real, why it’s not just wearing rose colored glasses or being in denial or turning your head to the truth, that hope begins with an attitude and an attitude is a choice. So I think that’s really one part of the message is all about hope and peace and life, regardless of challenges or the joys in somebody’s life. And then the other side, the other flow of messages that he talked about as coming from God, was what he started calling “heart songs” when he was about 5 years old, and trying to help people understand that we all have a reason for being. Just like you read, or hear, in church God’s plan—Mattie called it our reason for being, our heart song. And the best I can understand it is that it really is the universal truth. It’s what Jesus Christ taught us, it’s what Gandhi taught us, it’s what Martin Luther King teaches us, it’s what any good speaker, any peacemaker teaches us: in giving we shall receive, in doing good, good happens. That doesn’t mean you become rich in money. It doesn’t mean you get miracle after miracle and you live longer. It doesn’t mean that your life is peachy because you’re doing good things, but it means that if you’re open to God being a part of your life, if you can understand your reason for being and offer that to other people, it will come back to you. [It] took me a long time to understand that as well, and I finally came to understand that what he meant by heart song—he told me once when he was about 12 years old, because I said I don’t know what my heart song is, I really, I don’t know my heart song. And he said, “What do you need? What do you want most in life? What do you ache for? What would you do anything to have in your life?” He said that’s the first part of your heart song, because you know why it matters. You’re close to it. If you need money, if you need love, if you need happiness, if you need to be known, you understand why that matters. Your reason for being is to offer that to others. And what Mattie needed and wanted was happiness and love that lead to hope and peace. So he gave that freely to other people through his writings, through his speeches, and in giving other people these messages of hope and peace, that came back to him, and I began to understand that—that is God’s plan for us, to be fully who we were created to be. And what we need we offer it to others, because we get why that matters.

Q: And that’s a spiritual ministry? I think people hear some of the poems and miss the spiritual dimension that seems to be the foundation.

Yes. Now not every poem that he wrote had a spiritual dimension. Some were just pure fun. Some were—people would often ask him to write poetry for an organization or for a specific cause. But the bulk of his poetry, if you really read it carefully, there is a message of hope, of peace, of life, of offering, of finding what’s at your core. When he—I mean one of the most depressing poems I think he ever wrote is called “Abyss,” and it’s when he began really wondering, is my life ending? Am I going to get another miracle? When is my mortality going to end? And he really wasn’t looking forward to death, and he just really felt that he was in a dark space. But in writing about this so people go, “Yeah, I understand and I feel like this,” he said when you’re in this abyss, all you have to do is look up and realize even if you’re at the bottom, there’s the light. You just have to choose what you look at, choose your vision, and once you see it you climb right out. So even when he was struggling, he still would find some way to find inspiration or offer inspiration to other people by identifying with other people’s challenges or sharing his own so that other people could identify with him.

Q: What do you hear from people? You still get letters and emails. What kinds of things do people say, even today?

I get a lot of letters from school children who didn’t think they liked poetry until they started reading Mattie’s material, and then they realized poetry is not something beyond them, it’s not something way intellectual and that you can’t understand, that it’s shaping words in a special way on a page and carefully choosing each word so that it matters. I would say the bulk of what I get is where people say this is how my life has changed because of Mattie, because of what I’ve read, because I saw him on TV, because a friend gave me one of his books. Right now there’s History Associates, a local archive company. They’ve taken 50 boxes from my basement of fan mail and publicity information about Mattie, and they met with me a couple of weeks ago, and they said, “We’ve really tried to sort it, because everybody says they’re inspired.” So they’re trying to say I’m inspired to be a better person, I’m inspired to pray, I’m inspired to be a better parent, I’m inspired to think gentler, to be less judging. They’re trying to now categorize what that inspiration looks like or feels like to different people. I also, especially since it’s been 5 years since he died, get lots, or a fair number, of letters and emails from people who ask questions like when is Mattie going to have a committee for sainthood? What is the prayer I can pray for Mattie, for his cause? I’ve had a dozen or so people ask me for relics. And I go back and I tell people there’s been talk, but there is no formal committee. That doesn’t even begin until year five. But I even get, after he died I got mail from people all over the world that was addressed to “Mattie—Child Poet of America.” Or “St. Mattie—First Child Saint of America,” no other address, and these things would just end up in my mail box which, was very—I mean that’s an overwhelming—it’s beautiful, but the responsibility for me, when I sit back and think my son not only touched lives when he was alive, but since he died, he is continuing to touch lives, to inspire people. It’s the most beautiful thing in the world to have somebody write to you.…

Q: What’s that like as a mother, to know people think your child is a saint?

Well, I’m really careful with that because, one, he’s not recognized as a saint. I mean, if you take a saint as an ordinary person who lived an extraordinary life of holiness and called others to be their best self, absolutely my son is a saint, though not recognized. There are many, many people who are saints though not recognized, and yes, I do hope that one day there is an investigation for his cause, not because that would make me proud, because I think my son could continue being a source of intercession and inspiration for the world, which—that happens more when people are aware of him. So yes, for that reason, I think it would be lovely. But, you know, when I step back and think of me as Mattie’s mom, well, I was the one who would say, “Mattie is your bed made?” And he would say, “Does it look made?” It’s like, well, that wasn’t the question. I was the one that would have to answer his questions of, “If I’m going to be a writer and peacemaker, why do I need trigonometry and chemistry courses?” I saw the little boy, the human side, the child who cried when his feelings were hurt, who was scared of certain things. So I think that’s a blessing for me that I saw the full spectrum of my son. But the responsibility that I feel and the privilege that I feel to think that my son is touching people and touching lives long after my lifetime, long after this generation’s lifetime, is a profound thought that is very humbling, very, very humbling to sit back and think as rough as my life is I would never will or wish my life on anyone else in the world, but how grateful I am that I was chosen to be this child’s mother, that that was part of my reason to be. What a beautiful gift that was that I got to be Mattie’s mom, including the unmade bed. I’m just thrilled about that.

Q: What is that responsibility that you feel?

I think the responsibility is to—part of that was the reason I chose to write this book. I feel the responsibility to share with people the truth of my son’s life. What I don’t want people doing is thinking, “Oh, Mattie,” you know, and putting him up on a pedestal: he’s a little guru, he was perfect, he never got angry, he never got sad, he only spoke bits of wisdom. I mean, he wasn’t—that’s not who Mattie was. So I think the responsibility is for me to share as much information as I can about my son, about his life, so that people do know that he was real. They do know that living a good life doesn’t mean living a perfect life. It means always having God being a part of your life, always, if you have one of those dark moments, that you know instead of saying well, okay, I’m down, I might as well stay here. You pick yourself up, you choose to get out of bed another day. I think it’s my responsibility to offer that information to other people which was kind of hard for me, because I’m more of a private person. Mattie’s an extrovert. I mean he just loved sharing anything and everything with crowds. I’m a little more private, and it was a little more difficult to go out in public to share all the details of our life, but I think when the details of your life can inspire people to find hope when they’re really struggling, or to realize,  you know what, I am doing a good job parenting, or despite my burdens I have blessings—whatever the inspiration is that you draw for yourself, for you family, for your coworkers in whatever you’re doing, I feel like it’s my responsibility and my privilege, they’re hand in hand, to share that message—my story, Mattie’s story—and to share those details in a way that brings people closer to him in a very real way—not in a little guru way, but in a very real way.

Q: How has your faith changed in the last five years? How has everything that happened affected your spiritual journey?

I don’t know that my faith has changed dramatically in the last five years. I can say that my faith has grown dramatically across the 20 years that I had with my children, and it’s continued to grow on that spectrum since I’ve buried my fourth and only surviving child, which was Mattie. I think one of the greatest changes I had in faith came during Mattie’s final months. I’m very good at, through prayer, giving God a to-do list, all right? Dear God, this is where I need you, and this is how you can meet my needs. And I give God the little to-do list, and I think I began to realize, towards the end of Mattie’s life, prayer is not just giving God your wishes and your to-do list, it’s asking God to be on my to-do list for the day. It’s asking to bring God into whatever the moments are in my day, so that really started before Mattie died. Since he died, I’ve hit some very, very low points. I think about a year and half after he died, you know, people think if you get through that first year it’s all going to be okay, you get through that first year, and everybody’s there for the first anniversary, because everybody remembers Mattie died. Even my first three children, people are there for the first Christmas, the first birthday, the first anniversary. But then people go back to their everyday life, they go back to their norms, and I can never go back to my everyday life. I can’t go back to my norms because my norm was parenting my children. And it’s not that your life ends, but there’s this dramatic shift. Your path is no longer—you’re still going to end up at the same end point in your life, but you’re taking a totally unplanned path. You’re really starting all over again. I have had mornings where I’m not quite sure what the sane reason is to bother getting out of bed. I always find one, and if I can’t find one, what I’ve learned is to allow other people to give me a sane reason to get out of bed. And I think that’s one of the gifts from God, is that God is present in other people, in my kin family, in my friends. So as sad as some days are, and as much as I miss my children, I really work hard to open my spirit to God’s presence through other people, because I believe my children are with God. I don’t believe that heaven is some place up in the sky, up in a cloud. When people say, oh, Mattie’s right up there, I don’t see that. I see Mattie as right up here. I see spirit and heaven as being wherever there’s goodness, and if that goodness is in a space or in nature or in other people, that goodness is God, and my children are with God. So, you know, I seek to feel what I am looking for, a connection through heaven and goodness, through whatever I can find in the world that’s good.  I don’t know if that makes sense or not, but that’s where I am. I’m more praying that God just shows me doors and windows, because I’m really not sure what I’m supposed to be doing in life other than doing good, being my best self. So I ask God to help me recognize any opportunities to do that.

Q: You have an incredible support network. You have some really close people who’ve walked with you from the very beginning. Talk a little more about the role those people have played in your life.

I think if you were to stop and think about the details of Mattie’s life and my life, you think, okay, there’s been financial problems. There’s been a divorce. There’s been four children with disabilities who’ve died. I have a disability that’s progressing every year. You think about those details, and you think, wow, what a horrible life. And since all of my children have died you would look at me and think I’m very much alone. And in all honesty, there are times when I feel alone, because I love my children and miss them. I will never stop mourning the loss of my children, but I also don’t go through each day miserable, because Mattie and I have always had people around us that bring light to our life. In the book you learn more about what Mattie called our “kin family,” and he said you’re related to kin through life, not necessarily blood. It may or may not be blood. But he said blood relations can sometimes be sweet or sour, and kin relations are through life, and life is always good. So Sandy Newcomb is more like a sister to me than a friend, and her three children, who are now adults, two of them with their own children now, they’re like family to me. They’re my kin, and we celebrate holidays and, you know, when one person’s sad we’re all sad, and when one person’s having a moment of joy we all feel joy. I do talk about in the book at one point Mattie asked Sandy, why do you always do such good things for my mom and me? And when Mattie asked her this question he had been in the ICU for about 5 months. At the time Sandy still had two children living at home. She was working two jobs. She herself is divorced and a single parent, and yet she came to the hospital at least three days a week and would spend most of the night there with Mattie so that I could go in the waiting room and take a little break. And she said because that’s all that God asks us to do is to do good for others, to love your neighbor. And she told Mattie that your neighbor is whoever God puts in the path of your life, and if we just all reorganize that and do what we can in the moments that we can, life goes on. Mattie and I have often prayed in gratitude that we have people like that in our lives, that we have such an incredible circle of support. I mean, I’m in two different churches. I’m a Roman Catholic, I love Catholicism. I love the Holy Eucharist. Sandy is Presbyterian. I go with her to her church as well, where I find the most wonderful fellowship, the group of people that are there, just—there are good people everywhere. You just have to be open to that.

Q: You’ve mentioned your speech about not looking at life as how long you live, but how you live. Tell me about that.

One of the speeches that I give is called “Our Dash in Time.” I first heard it in the Presbyterian church from a minister who was talking about the difference between chronos and kairos. Chronos is really a two-dimensional look. It’s a measurement of life in seconds and centuries, whereas your kairos isn’t just seconds and centuries, it’s looking at the depth of the time that you live. So you can look at Mattie’s life, and the dash that marks 1990 to 2004 was not quite 14 years, and you think, what could somebody do in less that 14 years? But because of how Mattie chose to live, because of the kairos of Mattie’s life, the depth of his time, my gosh, I mean he lived an incredibly full life—not just with opportunities to do things, but with how he thought, how he chose to treasure a sunrise, a sunset, a baby holding his finger, I mean, just taking little tiny moments and cherishing them and making them that memorable, that celebrated, and inspiring others to do the same. Not that we don’t want many, many moments in our life; everybody wants to have as many heartbeats as they can. But it really is the measurement of your heart songs, or the depth of your life, that is how we’re going to be remembered. So Mattie, in less than 14 years, is remembered with this powerful legacy, and people smile when they hear his name. It’s sad that he’s gone, and people shake their head at that. But anybody that you say the word “Mattie” to that knows who he is. They smile. That’s powerful. That’s how I want to be remembered, with a smile, not as, oh, that poor woman, she buried her four children, but, wow, that poor woman, she buried her four children, but boy did she love life, and boy those kids were sure happy. I want to be remembered as a smile on people’s faces just like Mattie, and that comes from how you life your life, not how long you live your life.

Q: How are you feeling these days?

Health-wise I have a progressive condition, which is very frustrating. Mattie and I are very resilient, optimistic people. When you have a disease that’s constantly changing, getting worse, you can’t ever just get used to it. You know, we moved into this house a little over three years ago, set it up accessible, and everything was right where I could reach it. Oh, my goodness, a year later, it’s like, well, I can’t reach this anymore, I can’t reach this, so you change things.  It’s like, every year, you don’t notice it day to day, but when you go to decorate your Christmas tree or when you go back to the same place, you go to the beach every summer, and you suddenly realize I can’t lift my arm high enough to do this, I can’t transfer independently, you know, out of my wheelchair, I can’t decorate even the closest branch on my Christmas tree anymore. That’s not a lot of fun. Losing the ability to drive, you know, I feel like as I hit middle age, where you have the opportunity to really synthesize academic knowledge and experiential knowledge and spiritual knowledge, and you’re hitting a point where you just feel so blessed with it’s beginning to come together, you actually can do less and less and less physically, and you become dependent on other people, and that’s been really hard for me. And medically I’ve hit a few scares in the last year, with, like, cardiac-type things. It’s kind of scary, but I try as hard as I can to live in each moment and to not think about what’s going to happen. You have to think about what’s going to happen tomorrow, but you can’t focus on that. You have to have a vision for it but not get lost dwelling on it, in the same way with the past you can’t look at the past and get stuck in it in a way that you can’t move forward, and you can’t look at the future and what might happen tomorrow in such a way that you’re afraid to enter it. So I think that’s what Mattie meant with hope. You don’t live in denial, you don’t say the past didn’t happen and the future’s not going to bring its challenges, but you move through it the best you can and have a good attitude. You reflect the moment in a way that God’s there with you.

Q: For a lot of people it’s about control—what you can control and what you can’t.

I’m all about control. I’m an OCD, love control, absolutely, and it’s hard giving that up, you know, and it’s little things, you know. I like cleaning my own house. I like folding my own laundry because I fold in thirds. I’ve learned compulsive people fold in thirds. But now it’s I’m so grateful for anybody that does my laundry I don’t care if it’s folded in quarters or halves or thirds or fifths. I’m happy that people are doing it. But it’s really hard letting go of that control. It’s really hard knowing I will always be the passenger in a car. I will never be driving again. That’s a really, really tough thing when I’m a doer, a giver, a be-er, and you have to be the recipient and call someone and ask them to do something for you. That’s a tough lesson for me.

Q: What are you doing professionally these days?

I would say I’m an advocate and a consultant, a motivational speaker. I love writing, speaking, doing research, and the fields that I work with range from education, health care and family-centered care collaboration, but also peace and hope. I do a lot of mentoring of teenagers around the world who want to understand, how is peace possible? And I help people understand Mattie’s premises. Mattie called it the three choices for peace. What are these choices, how can we embrace them—that peace is not just an absence of violence, peace is also a conversation with people you don’t know or don’t understand. Peace is taking care of the earth. Just helping people understand how basic needs, equitably meeting basic needs of people, leads to peace. So my speeches are everything from how to work with families whose children might be dying to why does it matter that people feel happiness, hope, and have food and water and education? How does that lead to peace? And I love the work that I do.

Q: And the Mattie J.T. Stepanek Foundation?

After Mattie died, people that are in my neighborhood, in the city of Rockville [Maryland] in the King Farm community, they said Mattie’s message is not one that we want to get lost with the fact that he died barely a teenager. Had Mattie been [in his] 30s or 40s when he died, there’s a chance that he would have had an automatic place in history, and there were people who knew Mattie as a person, and part of the reason that I said I wrote this book—that  he wasn’t a guru, he was witty and wise, he was very real. So people who were his neighbors said we need to make sure people understand who Mattie was, what was his message. So they started the Mattie Stepanek Foundation, and really the mission of our foundation is to make Mattie’s message available and accessible, accessible meaning understandable. So we are working on curriculum guides so that teachers who want to incorporate peace or poetry or character development into preschool, into high school, into a university course, that there’s different worksheets or presentations, videos that they could rely on to introduce anything from “Heartsongs” to the three choices for peace to their students, and there are actually schools around the country who are already doing this type of work, and we’re trying to help incorporate what they’re doing with what we are doing. But it’s really just keeping that message of hope and peace out there and alive, and I think what we believe the foundation is, is that Mattie’s message is not unique. He offered us the universal message, you know: Give and you shall receive. Mattie’s life was unique. Mattie’s experiences were unique. Mattie’s choices as a young child were unique. So as a messenger he’s very powerful, you know. People listen when they hear Mattie’s words either on a page or on TV or even in the park named after him, the sound bites you can listen to. So because of that the message is the same thing other people say, but as a messenger he’s very unique, and people are drawn to him for any number of reasons. So it’s to keep that available for people, and I’m proud to be the eternal chair of this foundation.

Q: Other people say they have sensed Mattie. Have you?

I have had people who have contacted me to say they believe Mattie has interceded in their lives. They believe that Mattie has healed their child or touched their spirit or turned them back to God or prevented them from suicide. I have gotten messages; some of the messages I think are very profound and very believable. Some I think are people who want to feel something good. I personally have not felt my son, I would love to feel him, but I think if—I think my son, if he is speaking into people’s hearts or spirits, if he is interceding in people’s lives, and people recognize it…things like that are very powerful for me to hear, and what I would give to have my son come and stand and just say hi or yo, just say anything, just touch me, but I know that that would be wrong, and I think that my son is wiser than that, because if my son came and spoke to me or touched me, and I knew without doubt this is my son, I so miss him that I’m afraid I’d never emotionally or physically be able to move from that spot. I would be trapped, thinking OK, if he could do it once, this must be the magic portal. I’m going to stay right here, and I find that the people who tell me they have received some message from Mattie are ones that are able to move on after that. Those are the ones I believe more….

Before Mattie died, in the final week of his life, I mean, Mattie knew he was dying and I did, too. But a parent can never, ever just say, OK, it’s time, you can go. I mean, that’s a really tough thing, even as your child is dying in front of your eyes and your heart. You can’t give them permission. You can’t be OK with it. You can give them permission, but you can’t really be OK because that goes against everything that parenting is. It’s not okay to bury a child, it’s not OK. No matter how good a life that child lived, no matter how graceful the death is, the death of a child—nothing makes it right. So Mattie was clearly ready to go but wanted me to be, he wanted me to let him know that I’d be OK, and he had said things that he had said to other people before: you can’t lie down in the ashes of another person’s life. He had said all kinds of profound things: Take my message forward. Your message, my message are so similar, Mom, be a messenger for me. You know, take the torch, give more light to your own message, beautiful things. I think the thought that was most meaningful, and if I ever write about my life story about grief—because this book is not my story, it’s Mattie’s story. It’s not my story of loss. It’s his story of life—if I ever wrote my own story it would be called “Choosing to Inhale,” because that was the challenge my son gave me. He said when I’m gone, promise me you will choose to inhale, not breathe merely to exist, and that means finding some worthy reason to move into each next moment, and that’s the most difficult choice I face every single day, but it’s the most worthy choice. Once I’ve made that choice to move forward, to move with God, to be a messenger, to give a speech, to write a book, to serve as a consultant, all the different things I do, I have to choose that, because the easiest thing to do would be to lay in bed until it’s my time to be with my son again. But he challenged me to make life more than breathing. Choose to inhale.

I had four children in a four-and-a-half year time span, which makes me a very firm, good Irish Catholic woman, which is what I am. But when I was having these children, I did not know I was going to give birth to children with this condition. When I was having children, I was apparently healthy, active, running two to five miles a day, coaching and playing sports, working on my first doctoral degree, had no clue—and it was clear something was wrong with the children, but they were misdiagnosed, and with the misdiagnoses came the misprognoses of recurrence. So I thought the first one was a fluke of nature, the second one was recessive, you know, they told me the third one would be healthy. Mattie’s my fourth. I had, I mean, I was doing, practicing many ways not to have a fourth. He was clearly a spirit meant to be, not an accident, a spirit meant to be. So yes, by the time Mattie was born I had already buried two children and had a third that was going to die from the same condition, and I knew that Mattie, short of a miracle, was going to have this mystery ailment that afflicted my children. We found out when Mattie was two what was wrong with me, and that’s when they went back and backtracked and figured out what was wrong with the kids, and I had no more children after that. What kept me going through all of that—while one of my children was alive, what keeps you going is very different than what keeps me going now. When your child’s alive, your number one focus is keep that child alive, and if the child’s not in an active medical crisis, then make that child know life is good despite the equipment, despite the ventilator, the trach, the needles, being in the hospital. Why would you want to celebrate life? Why would you want to live longer?  So how I coped during the bulk of the 20 years when I had my children was by teaching them that life is a celebration….I gave my children a celebration of life in whatever few months or years they had. So even though you grieve the loss of your child, when there’s still another living child, not that the grief isn’t there, but you have to focus on celebrating life with that child, with the one that’s still alive. You can’t give them your grief just because you miss their sibling. When Mattie died, that’s when the grief became so overwhelming, because where do you put your mommy role? It’s really difficult to be a mommy to children who have died. You know, bringing flowers to their grave, cutting the grass around their marker, that’s—it’s a very unnatural role, but you don’t suddenly not feel like you’re a mommy any more. You want to nurture, you want to take care of things, and you want to teach somebody to celebrate life. So while my children were alive, clearly I coped, you know, through religion, through faith, through spirituality, but also I had my children. That was my celebration. It’s a very different thing once there is no child there, and you really are relying on God, your spirituality, and the kin family of support that’s around you to help you choose to inhale everyday.

Mattie knew his entire life that he had a condition that could lead to early death, that he had a life-threatening condition. When he was 10 years old, he realized that that possibility of an early death was becoming more of a probability. We really thought he was going to die before his 11th birthday.  We’re not quite sure how he eked out those last three years. We’re thrilled that he did. I think it was when Mattie was 13, it was the fall of 2003, Mattie had several conversations with me where he said, “God’s no longer giving me messages. God’s just walking with me through my life,” and at that point he realized his time on earth was complete and that he would probably die sometime during the coming year because he had fulfilled his reason to be. And he was not excited about that. He really wanted God to say you’ve done such a good job I’m going to give you five bonus years. I mean, he was not anxious to die. But I think he realized when he was 13, I’ve done what I came to do. I’ve done it well. There was a sense of urgency that he felt to get as much in place as possible that could go on after him. He called it his echo and his silhouette. You know, get as much writing down; get as many video tapes in so that things would last. So he always knew that he would die soon. I think at 13, I think on the day that he turned 13 he knew he was not going to turn 14. He was very clear. He tried to tell me spring of 2004 before he went into cardiac arrest. He kept trying to prepare me for what was about to come, and I couldn’t listen to him. I just—I couldn’t. I knew what he wanted to say, and I thought, if I listen to you I’m going to tell you, it’s almost like saying, OK, all right, and I couldn’t do it, and I feel very badly about that now. I feel like I didn’t—it was one of my mommy decisions that I regret. You know, I should’ve just put my arm around him and said that must be really difficult, you must feel very alone. But I thought if I did that he’d think I’m saying, wow, this is really sad but it’s—you’re right. So I wouldn’t even let him talk to me about it. I just—I couldn’t tend to it, and I feel very badly. I will forever feel badly about that. But I don’t think he holds that against me, I think he knew that I was being a mommy.

BOB ABERNETHY, anchor: As Congress assembles a health care reform package, a longtime expert on medical ethics writes in a recent issue of Commonweal magazine that there has been an important idea missing from the debate—the concept of the common good. The expert is Daniel Callahan, founder and now president emeritus of the Hastings Center. His new book is Taming the Beloved Beast.  He joins us from New York.

Mr. Callahan, welcome. How do you define the common good?

DANIEL CALLAHAN (Senior Researcher and President Emeritus, The Hastings Center): I mean by the common good our life together, the stranger and the neighbor, the friend we know and the person—people we don’t know. The common good I think of as essentially a social concept. Aristotle said human beings are social animals, and I think that is true, and it seems to me that as we think about our own life, either in politics or health reform, we have to think not only of ourselves and our family but also of the neighbor, the stranger, the person we don’t know, and somehow knit that together into some meaningful whole.

ABERNETHY: And was there a time in this country’s history when the idea of the common good was very strong, very prevalent?

CALLAHAN: Well, in a curious sense, its not like—Europe has a much stronger sense of the common good, in great part because of their wars and other terrors they have gone through. In this country I think there has been ambivalence and uncertainty about the common good. We really—freedom has been our main catchword, the main value we have gone by, justice a little bit less so. But the idea of working together for the common good is something—it certainly is come at in times of warfare, but it’s sporadic. It often doesn’t mark our common life together, and a great number of people really, I think, are just enormously ambivalent. They want to help the poor, but of course they don’t want to raise their taxes. They’d like health care reform and they see the need for cutting costs, but they don’t want to give up anything themselves. So we are very torn on the common good, I think.

ABERNETHY: Is that why it has been so difficult to put together health care reform, because nobody wants to give up anything?

CALLAHAN: That’s a very powerful part of it. Now some of it is different politics. Republicans and Democrats differ on the role of government. But it is very striking that even the Democrats, who started out talking about cost control, immediately backed down and said of course we can’t take anything away from people. But, of course, we can’t control costs unless we do, unfortunately, take some things away from people.

ABERNETHY: And that’s the idea in your new book, Taming the Beloved Beast, isn’t it, that technology, medical technology, has become so important, but also so expensive, that there have got to be some kind of limits, some kind of controls. Is that right?

CALLAHAN: Exactly right. Technology is probably the main thing that drives up health care costs in this country. Everybody loves it. Doctors love it, patients love it, and it’s part of American culture, and it’s done wonderful things. It keeps us alive longer, it keeps us healthier. Yet, at the same time, the cost of it all is beginning to really corrode, even destroy, the heath care system. It’s one of those wonderful cases of when is enough enough, and when does a good thing turn into a bad thing?

ABERNETHY: And, very quickly, are we going to get a good, in your judgment, a good health care reform?

CALLAHAN: I think we’ll get a good reform in the sense that we’ll probably see a much enlarged coverage of the uninsured, and we’ll see certain changes, improvements in health care for children and Medicaid. At the same time, we will not be able to control costs under the present bill, and I think that’s going to create enormous problems in the very immediate future.

ABERNETHY: Daniel Callahan of the Hastings Center, many thanks.

Daniel Callahan

The aim of health care should be, within a finite life span, to help us to have a good chance to progress from being young to being old—but not to go from being old to being indefinitely older; to relieve us of our most burdensome physical and mental suffering—but not always fully or perfectly; to rehabilitate us as best it can if we are disabled—but to understand that some of us will live our lives with chronic illnesses and disabilities; and to help us achieve as pain-free and peaceful death as is possible—but knowing that goal will not always be possible. Medicine ought not to seek an indefinite extension of life or aim to enhance our nature beyond the ordinary standards of good health, or search out medical ways of excessively fighting our decline and frailties, many of which are now and always will be unavoidable. Just as death ought not to be taken as the ultimate enemy of human life, health should not be taken as the ultimate good.

As Judith Feder and Donald W. Moran have observed, “To be serious about cost containment, it will be necessary to admit that containing costs will require affecting the decisions that individual Americans make every day in all the settings in which they make them.” Whether Americans can be brought to think differently about health, to expect less and to settle for less, and to be willing to forgo some health care they might like, or even need, for the sake of the public good, takes a utopian, or maybe a counter-utopian elixir of hope and imagination. I see no plausible alternative.

As individuals, we are in a position similar to our health care system problem if we do not learn to rein in our aspirations for perfect health, to live with some of our needs that might otherwise be medically dealt with, to run some risks with our health, understand that an elevated level of this or that reflects a possibility of harm only, not a death sentence, and to recognize (even if begrudgingly) that a cure of one of our otherwise lethal diseases will not save us from some other one. Cured diseases are always succeeded by a final and fatal disease. If we as individuals do not bring some greater realism to our health, some willingness to put up with our mortality and vulnerability, and the anxiety that goes with its recognition, then there is no hope that costs can be controlled, hardly any technologies that can be limited or denied.

There is, to be sure, an obvious objection to my line of thought here. Even if, as individuals, we limit our medical appetite, there is no guarantee that any money saved by our altruism will go to other more serious social or health needs. True enough, and that is one of the serious penalties for living in a society without universal health care and the circumscribed budget that should go with it. But it is also true, as we can see with voting, that it is a bad mistake to think that, with a large electorate, our individual votes are irrelevant. The danger is not that one vote will harm the election process. It is that, if everyone thinks that way, then the process will indeed be harmed. So, if only a few of us begin to change our views of health care, and then a few more, that might indeed make a difference.

My scenario may be fanciful, but as individuals we need an open discussion on what counts as good or bad choices, wise or imprudent ones, and our social obligations to our community as we make them. Such a discussion need not be, and ought not be, coercive. It might, however, help shape some rough consensus, moving us at least in the right direction There is an obvious truism, usually ignored in health care, that the collective, aggregate impact of our private choices can affect the public good. Hence, it is worth the effort to see if those private choices can be nudged in a helpful direction. That direction would be, following my finite model of health care, toward less, not more, and even much less.

Photos by Suzanne Opton

Originally published November 30, 2007

War is, in some ways, the ultimate spiritual crisis.

By its very nature, it requires participants to perform acts that would be considered legally and morally wrong in civilian life. “Your whole life, regardless of religion, you’re told, ‘Don’t kill, don’t kill, don’t kill.’ Then all of a sudden it’s, ‘Here’s a gun.’ It’s hard to reconcile that,” says Linda McClenahan, a Dominican nun, trauma counselor, and former Vietnam Army sergeant who lives in Racine, Wisconsin.

In a 1995 study, 51 percent of veterans in residential post-traumatic stress disorder (PTSD) treatment in a Veterans Affairs facility said they had abandoned their religious faith during the war in which they fought. In the same study, 74 percent of respondents said they had difficulty reconciling their religious beliefs with traumatic war-zone events. Battle creates moral confusion, and it can leave a soldier spiritually as well as physically wounded.

Unlike many other traumatic experiences, combat can cause “moral pain” arising from “the realization that one has committed acts with real and terrible consequences,” according to a seminal 1981 article in PSYCHOLOGY TODAY by Peter Marin. He was writing about Vietnam, but his overarching thesis could be applied to any military conflict. Profound moral distress is the “real horror” of war, yet its effect on those who fight is rarely discussed.

The difficulty of talking about the spiritual wounds of war was apparent in October when the Episcopal Society of St. John the Evangelist in Cambridge, Mass., announced a four-day retreat at its monastery called “Binding Up Our Wounds,” for men and women returning from places of war. Nobody showed up.

A November report published in the Journal of the American Medical Association underscores the magnitude of the problem. After they return from combat in Iraq, one-in-five active-duty soldiers need mental health care. For reservists, the numbers were even higher: Two out of five need treatment. And one 2004 study concluded that veterans who avail themselves of mental health services appear to be driven more by guilt and the weakening of their religious faith than by the severity of their PTSD symptoms.

“In a war, in a firefight, you’re both victim and perpetrator at the same time,” says the Rev. Alan Cutter, general presbyter of southern Louisiana for the Presbyterian Church (USA) and a former Navy officer who served in Vietnam. “At its heart, a trauma, and especially a war trauma, leaves a wound to the human spirit. When I came back, my spirit was pretty well shredded and ripped.”

Marin wrote that moral pain or guilt erroneously remained a form of psychological neurosis or pathological symptom, “something to escape rather than learn from,” and he alleged that therapy failed to take moral experience into account. More than a quarter-century later, many experts feel little has changed.

“Once the category of PTSD was established in the early ’80s, that swallowed the veteran whole,” says William Mahedy, an Episcopal priest and former Army chaplain who has spent 33 years working with veterans in southern California. “Combat creates far more wide-ranging problems than stress.”

It’s not just the act of taking a life that raises the kinds of questions Mahedy says can only be addressed spiritually and philosophically. Witnessing death and suffering also goes to the heart of life’s meaning: Why did God, if there is a God, allow this? Why is killing the enemy not a sin? How can I be forgiven? Why couldn’t I save my comrade? Why am I alive when I don’t deserve to be? Psychology isn’t always equipped to answer such questions.

“Trauma can be characterized as a sense of betrayal of one’s experiences: life wasn’t supposed to be this way,” says the Rev. Jackson Day, an Army chaplain in the central highlands of Vietnam from 1968 to 1969 and now the pastor of Grace United Methodist Church in Upperco, Maryland. “The faith parallel to that would be the statement, ‘God has let me down. I did my part, and God didn’t do his.’”

In his book ACHILLES IN VIETNAM (1995), clinical psychiatrist Jonathan Shay explored combat trauma through a close reading of the ancient text of the Iliad and his own experiences treating Vietnam veterans with chronic PTSD. Those with lifelong psychological injury, he argued, had suffered a betrayal of “what’s right” — of leadership, trust, the dead, the social and moral order — above and beyond war’s “usual” horror and grief. Those whose belief in God’s love was shattered by war suffered another betrayal: their worldview and sense of virtue were obliterated.

In Shay’s follow-up book, ODYSSEUS IN AMERICA (2002), he used Homer’s Odyssey to look at returning troops whose spiritual wounds incurred on the battlefield can fester and worsen at home. The conviction that virtue is no longer possible, given God’s abandonment, can result in a withdrawal from moral commitment.

Medical-psychological therapies, Shay wrote, “are not, and should not be, the only therapies available for moral pain. Religious and cultural therapies are not only possible, but may well be superior to what mental health professionals conventionally offer.”

In an interview, Shay, whose work at the Boston VA outpatient clinic has been primarily with Roman Catholic patients, elaborated. “My sense is that this is a fundamentally religious issue. It’s possible to package it as a mental health issue, but I think we lose out. Even people who have had good secular treatments for their trauma still feel a need for the religious dimension of it. I don’t think as a society we’re offering it.”

VA research suggests that veterans who have suffered a greater loss of meaning to their lives are more likely to seek help from both clergy and mental health professionals. Therapists, however, may hit a roadblock with treatment when they feel out of their depth on spiritual or religious matters, and most clergy are not trained in trauma response.

But all faith traditions offer resources to respond to trauma, such as the Catholic sacrament of penance and reconciliation, of which confession is a part.

One of Shay’s patients was ordered by his lieutenant to “take care of” 17 Viet Cong prisoners, an order he interpreted as “kill them.” His squad was reluctant, and so he began firing first, even egging the others on. What weighed most heavily on his conscience years later was not his crime, but his belief that he had led others into mortal sin. “My response was that we knew a number of priests who had been chaplains in war and who knew what this was about,” Shay says. “This is about the real stuff, not the sins you confessed to in parochial school, but murder, cruelty, rape. [Your faith] has the resources to respond to that in a way that will matter to you.”

What matters to one won’t always matter to another. It depends on what faith, ritual, sacrament, or person you have invested authority in, says Rabbi Harold Robinson, a retired Navy rear admiral and the current director of the JWB [Jewish Welfare Board] Jewish Chaplains Council. As a chaplain, Robinson found that the study of Jewish texts on war and self-defense served as a powerful resource in addressing spiritual injury. “I think you invest more of yourself when you try to study and understand something,” he says. “By grappling with the text you’re also grappling with yourself. It’s an interactive process, not one that’s just imposed.”

Other chaplains have used Psalm 23, which famously portrays God as a patient shepherd, or Psalm 31, whose speaker calls himself a “broken vessel,” and they ask where veterans see themselves in the psalm. Even people who are not religious might be open to the psalms, according to Major Samuel Godfrey, an ordained minister in the Pentecostal Holiness Church and a chaplain in Iraq for the Combat Aviation Brigade, 3rd Infantry Division. Shareda Hosein, an Army Reserve lieutenant colonel and the Muslim chaplain at Tufts University, lists several passages from the Qur’an dealing with Allah’s forgiveness and guidance that she says she might use in counseling a Muslim soldier — from Sura 39, for example, which promises mercy for those who repent: “Say: ‘My servants who have transgressed against themselves! Despair not of the Mercy of Allah, verily Allah forgives all sins. Truly, He is Oft-Forgiving, Most Merciful.’”

In early medieval Europe, warriors returning from battle were expected to feel shame, even when their killing was technically licit. A 9th-century penitential, according to THE MORAL TREATMENT OF WARRIORS IN EARLY MEDIEVAL AND MODERN TIMES by Bernard Verkamp, “stipulates that the man who is blameless in committing homicide in war should nonetheless seek purification, because of the shedding of blood, and stay away from the church for one or two weeks, and abstain from meat and drink during the period.”

For the ancient Hebrews, too, the shedding of blood was considered a source of contamination. The Book of Numbers dictated a seven-day period of segregation outside the camp for returning warriors and mandated the purification of fighters and their garments.

As founder of the International Conference of War Veteran Ministers, Father Phil Salois, a Catholic priest and chief of chaplain services for the VA Boston Healthcare System, has developed ecumenical liturgies incorporating verse by World War I poet and soldier Wilfred Owen, Bible readings, and prayers written specifically for services of reconciliation and healing. “I think it’s about redemption, to bring back meaning in their lives,” says Salois, who served as an infantry soldier in Vietnam. “We try to teach them God loves them no matter what happened to them. There is nothing that is unredeemable.”

Some Jewish veterans use the mikveh, or ritual bath, in their search for a rite of purification and rebirth. The Birkat Hagomel, a public prayer of thanksgiving (”Praised art thou O eternal God ruler of the universe, who has redeemed with kindnesses those who are guilty, and who has redeemed me with all manner of goodness”), can also be recited before a Jewish congregation by someone who has survived a life-threatening situation. The prayer requires a communal response affirming redemption. “Afterwards, it entitles everybody in the congregation to go up to you and say what happened to you? Are you OK? And to make human contact out of that moment,” says Rabbi Robinson.

But Robinson questions whether a truly communal purification ritual is possible, suggesting that the separation between those who serve in the military and those who don’t is too wide to bridge meaningfully, and there is no consensus about where purification finally resides. Is it with the doctor and the psychiatrist, or with the priest and the rabbi?

Yet community involvement is something Shay feels is crucial to the whole notion of a purification ritual. “It’s not a matter of pointing a finger at the returning vet,” he says. “It’s that we all need purification after battle. You have gone into danger and done some things that perhaps were truly terrible, but you’ve done them in our name, and it’s we who sent you to do those things.”

Some returning veterans experience great feelings of isolation, and communal rituals can offset their sense of aloneness and provide them with an opportunity to talk about their experiences. As Captain Jeffrey Cox, a Massachusetts National Guard social worker who returned from a tour of duty in Iraq in 2006, puts it, “Does anyone…know my story outside of the people I’ve served with?”

As the recent experience of the Episcopal monastery in Cambridge demonstrates, for those who have served — and will serve — in Iraq and Afghanistan, it may be a long time before anyone hears their stories. Salois recalls a Chicago retreat where four couples canceled the day it began. That was the first retreat a young Iraq veteran had attended. “He was very focused on what we said about our experiences [in Vietnam] and how we journeyed throughout the years. When it came time for him to speak, he said, ‘I appreciate everything you’ve said, but I’m not ready to talk about it.’ And I thought, well, it was 13 years before I started talking about this.”

“One can hope that the rest of us will accompany them when we can and follow them when we should,” Peter Marin wrote of the nation’s war veterans. Their recovery, we may need to learn again, is a collective responsibility.

Benedicta Cipolla, a writer in New York City, has also written for Religion & Ethics NewsWeekly on Iraq, the ethics of torture, and Reinhold Niebuhr.

BOB FAW, correspondent: At Le Bonheur Children’s Medical Center in Memphis, Tennessee, four-year-old Ethan Barker might seem carefree. But his parents, Chris and Tamara, are frightened about Ethan’s upcoming brain surgery. So when neurosurgeon Dr. Stephanie Einhaus asks if the family would like to pray, they readily agree.

DR. STEPHANIE EINHAUS (praying with family): We come before your throne today, Lord, asking for your blessing on this sweet child of yours.

FAW: Ethan’s surgery is delicate. Einhaus takes a bone from his skull and modifies it to cover a space created by an earlier surgery.

DR. EINHAUS: (in operating room): …the bone of the skull is kind of in two layers and so you can split it like an Oreo cookie…

FAW: For this skilled practitioner, praying benefits her as much as the patient’s family.

DR. EINHAUS: If I’m having a hard time doing something, getting a catheter in a fluid space, I’ll just pause and in my own head I will pray, “Please, Lord, help me get this right.”

FAW: Einhaus says praying with families helps them with the stress and gives them hope.

DR. EINHAUS: It helps them to hold on to something to get through, you know, that crisis that’s going on. Most people want to do it. They’re like, they’re so relieved.

FAW: Eleven-year-old Holly Barkley, about to undergo surgery to drain fluid from her brain, does not face a crisis.

DR. EINHAUS (to patient): How’s your head feeling?

FAW: But her family also wants to pray.

DR. EINHAUS (praying with family): I pray that you will let this family feel your power, let them feel your peace, Lord…

FAW: Prayers like that, family members agree, can bring comfort.

CHRIS BARKLEY: It puts a sense of comfort in you. Normally, doctors don’t do that, and it probably makes people feel closer to the doctor. You want them to care just as much as you do.

LAURA YOUNG (Holly Barkley’s mother): It was more of the Lord was on our side, and it told me then it was going to be okay, and you know I was ready to—if anything came out negative, I was ready to face it.

DR. EINHAUS (to Ethan’s family): Hello. We are all done, and it went great.

FAW: Einhaus, raised Catholic and now a Southern Baptist, was once reluctant to pray with patients in the beginning for fear of being ridiculed. But as time went on she felt more comfortable asking patients if they would like to pray.

DR. EINHAUS: Once you start doing it you realize how much people really like doing it and how powerful it can be as a support for not only the patient but for the families.

FAW: You regard your role as a physician as a kind of ministry.

DR. EINHAUS: I do, I absolutely do.

FAW: In this part of the Bible belt, many patients—like Marletta Scott, facing difficult triple bypass heart surgery at Methodist South Hospital—say they would welcome a chance to pray with their doctor, even though Marletta Scott’s doctor, heart surgeon Alim Khandekhar, happens to be Muslim.

MARLETTA SCOTT: He did explain to me that, overall, that, you know, it was in the Lord’s hands and that he’d be watching over him as well as me during this procedure. I mean, and that’s all that we can ask for.

FAW: That makes you feel good, that gives you comfort?

MARLETTA SCOTT: Yeah, it does.

FAW: in his 32 years of professional experience, Khandekhar says he has found that patients with faith often recover faster.

DR. ALIM KHANDEKHAR: Because they rely not only on the doctors, the medicine, but they rely on a power that is more powerful than all of them, that puts them at ease with themselves, at ease with the decision they are making.

FAW: What all this suggests, especially in this part of the country, is a growing trend by physicians to treat physical and spiritual problems together. After all, says the founder of this Memphis clinic, 50 percent of the patients who come here for primary care do not have medical problems.

DR. SCOTT MORRIS (Founder, Church Health Center, and United Methodist Minister): Many of our physical complaints come about because of our spirits being broken. What they need is a way for us to help them deal with this spiritual devastation.

FAW: So here at the Church Health Center, which since 1987 has treated 60,000 low-income people without health insurance, the spiritual needs of a patient are addressed before they ever see a doctor.

DR. MORRIS: From my point of view, if we want to be healthier, you must have a healthy spirit as well as a healthy body. We know, I think, in our heart of hearts, that being at peace, being bathed in what a person perceives as the love of God, makes people healthier faster.

FAW: But mixing prayer with medicine can cause problems, especially when the goal of reducing suffering conflicts with the wishes of devout patients. For example, a recent AMA [American Medical Association] study found that patients of faith demand and get more aggressive treatment than is medically warranted, and there are also concerns that a patient can be exploited if a doctor uses prayer to proselytize, to promote certain beliefs.

PROFESSOR MARK MUESSE (Associate Professor of Religious Studies, Rhodes College): It might take the form of a particular kind of prayer that the patient might be uncomfortable with. It might include accepting certain kinds of creedal statements that the patient would not otherwise accept.

FAW: At Rhodes College, where he teaches comparative religion, Mark Muesse also worries that praying with a patient could compromise a doctor’s relationship with a patient.

PROF. MUESSE: There could be a boundary crossed there, that a doctor begins to lose his objectivity in relationship to a patient. You’re losing some of the critical distance, I think, that’s oftentimes necessary for proper medical treatment.

FAW: Physicians like Einhaus counter that even if that boundary is crossed, no harm need result.

DR. EINHAUS: No matter what, you’re going to develop a relationship with your patients, okay? So the fact that I’m praying with them may make that bond a little stronger, but in no way would it affect my judgment.

FAW: And that element of compassion, physicians argue, is what is often missing in the training many doctors receive.

DR. KHANDEKAR: During my training, you know, being a cardiac surgeon, I don’t think that part has been stressed enough. It helps me to have another power behind me to do what I do. I do not think enough doctors use this power.

FAW: Here, though, that recognition—that the spiritual can affect the physical—seems to be growing.

PROF. MUESSE: In the past, you know, doctors would take care of the body, and the ministers and the chaplains would take care of the soul, but now we’re seeing that those two things cannot be separated.

FAW: Shortly after his surgery, Ethan was almost as playful as before. Holly, too, was doing just fine. For each, medical technology prevailed.  But in this medical theatre, more and more physicians seem to be sharing a belief that there is more at work here than science and skill.

DR. EINHAUS: We’re not always in control. God’s always in control, and so things may not turn out the way we want them to. We may not like it.  We may not understand it this side of eternity. But we have to trust that he is still in control and that if they go and they die, that heaven is really a good place.

FAW: Here, where there is recognition that when in comes to healing, fixing the body alone is an incomplete, indeed, flawed approach.

For Religion & Ethics NewsWeekly this is Bob Faw in Memphis, Tennessee.

BOB FAW, correspondent: Sometimes for an autistic child like Elizabeth, cheered on here by her father—

RAY BREEN (to daughter on bicycle): Turn, turn, turn. You can do it, you can do it, you can do it. Good, good.

FAW: Sometimes there are small victories—

RAY BREEN: Excellent, excellent.

FAW: —and the demons of autism loosen their grip. Too often, though, for Elizabeth there are other moments of seemingly impenetrable darkness and frustration. Unable to speak, Elizabeth communicates now by finding letters on a letterboard or typing into a keyboard. Even that, says her mother Ginnie, does not spare Elizabeth moments of agony.

GINNIE BREEN: I remember so distinctly one of the first things she typed out: A-G-O-N-Y, agony. This was a little six-year-old child, and she knew what agony was, and then she wrote, “I need to talk”—that that was her agony.

FAW: She wasn’t always like this. In her first 15 months, Elizabeth was healthy, active, alert, even verbal. Then she changed drastically.

GINNIE BREEN: Besides the complete loss of language within a week, she did start to have repetitive behavior and have frustrations and tantrums and really kind of left us.

FAW: Researchers suspect genetic and environmental factors cause autism. It is characterized by unconventional facial expressions, limited motor and social skills, and difficulty communicating—a life largely dependent. For Elizabeth’s parents that diagnosis was devastating enough, but they were also told there is no reliable treatment, no guaranteed cure, and ten years later not that much has changed, says Dr. Anthony Rostain, an expert on autism at Children’s Hospital of Philadelphia.

DR. ANTHONY ROSTAIN (Children’s Hospital of Philadelphia): It really affects almost every aspect of how the child thinks, acts, feels, and develops both cognitively and emotionally. So, as a result, it’s hard to come up with one-size-fits-all kind of treatment.

FAW: Elizabeth’s parents, Ginnie and Ray, both enjoyed lucrative Wall Street careers but gave them up to focus on their three children and the battle against autism. Early on, behavorial therapy exercises like this, they were told, might help Elizabeth to organize the chaos in her mind, help her to learn how to learn.

Teacher to Elizabeth: Show me jumping. Turn around. Good job. Can you show me sitting? Nice job.

FAW: Since she was three years old, her school district has paid a full-time professional aide to help Elizabeth academically.This is what a respected speech therapist believed might help loosen Elizabeth’s tongue. It turned out to be more fun than effective.There have also been years of special diets and vitamin supplements and homeopathic drops costing hundreds of dollars every month, a $20,000 hyperbaric chamber, which pumps extra oxygen into her brain for an hour every day, even unproven therapies like these prism lenses which distort Elizabeth’s vision in hopes of reordering the way her brain processes information.

FAW: Are you convinced that this has benefits?

GINNIE BREEN: I believe that this has helped other children.

FAW: And several times Elizabeth’s mother has taken her cross-country, seeking healing in prayer services.

GINNIE BREEN: We’ve used educational interventions, medical interventions. Why not spiritual interventions?

FAW: Parents of autistic children face a terrible dilemma. They are forced literally to experiment on their own children because the medical community has not tested and proven those treatments the way it has with treatments for physical conditions like heart disease or cancer.

DR. ROSTAIN: We are in very, very, very early stages of understanding how medications might improve functioning.

FAW: You don’t fault a parent for trying everything conceivable?

DR. ROSTAIN: I don’t, because if I had a child who wasn’t responding to treatments that were prescribed by the doctor, I might very well take that child to someone else and someone else and someone else.

FAW: What has happened to Elizabeth has happened with countless other autistic children—so many interventions with success only hit or miss. Ethicist Arthur Caplan:

PROFESSOR ARTHUR CAPLAN (Center for Bioethics, University of Pennsylvania): I could take you online and find tons of quacks, rip-off artists, selling quote unquote “treatments” to parents of kids with autism. It is a huge problem.

FAW: It is also an ethical minefield: Does society have the responsibility and can it afford to help autistic children who lack the resources lavished on Elizabeth? If so, should that task fall, as it mostly now does, on local public schools?

PROFESSOR CAPLAN: You can’t do it that way. Obviously, different school districts have different amounts of money. We need a national policy to divvy up resources to autistic kids, not the school board budget. That makes no sense at all.

FAW: One intervention which has worked well for Elizabeth began five years ago in Austin, Texas with language therapist Soma Mukhopadhyay, who taught Elizabeth to use the letterboard. Then, a stunning turn in Elizabeth’s life: At the urging of her personal education aide, Terri Bird, Elizabeth began writing powerful, often deeply personal poetry, turning some of her frustration into inspiration, and for the first time, those around Elizabeth discovered her inner voice. For example: “…It’s not easy, you see, it’s very hard being me. / There is so much going on in my mind / All of the time.”

FAW (to Elizabeth): Why do you write poems?

Elizabeth types out the word F-E-E-L-I-N-G-S

FAW: Your feelings—that’s why you write poems. Elizabeth is, says her mother, “a very spiritual child,” and some of her poems are religious.

GINNIE BREEN (reads from poem “God Loves You”): It does not matter who you are / It does not matter if you stray far / God is always there for you…

FAW: Elizabeth has written 90 poems thus far. Many reveal her yearning to be heard.

GINNIE BREEN (reads from poem “Me”): If only they could walk in my shoes / They would share my news / I am in here / And trying to speak / Every day in some kind of way.

FAW: Sentiments echoed in this anthem written for children with autism.

Vocal music: “Oh, don’t you know I’m trying to find a way to show you who I am…”

FAW: Because she can communicate, Elizabeth, accompanied by Terri, also attends a mainstream public school where she excels especially in math.

TEACHER: Find the greatest common factor of 18 and 24?

Elizabeth types the number 6.

TEACHER: Good girl.

FAW: Her teachers marvel at her performance and persistence.

KERRI BENSON (Math Teacher): She’s taught me about patience, and I just, I can’t even begin to explain that I’ve probably learned more for her than anybody in life so far.

FAW: Elizabeth is warmly received by other students. Besides writing, Elizabeth can read with remarkable speed, and Terri tests her comprehension.

TERRI BIRD (Education Aide): Doing this job with Elizabeth is the most rewarding thing I’ve ever done in my life.

FAW: Elizabeth’s success and her failures—this two-steps-forward, one step back—have been physically exhausting and emotionally draining for her and her family. It has also severely tested her mother’s faith.

GINNIE BREEN: It’s a natural thing to cry out where are you, God? I mean, I’m calling here in the darkness, and I can’t take too much more sometimes.

FAW: And though she on occasion has wavered, her beliefs have emerged stronger.

(to Ginnie Breen): Has it reinforced you faith?

GINNIE BREEN: Absolutely. There are times I know that we are being blessed on the right path here, and I’ll pray about it, and we’ll move forward.

FAW: Whether Elizabeth will eventually speak is, at best, a long shot. She may, her mother concedes, always need assistance, which is why in this household success is measured one day, one small victory, at a time.

GINNIE BREEN: I want to be able to say I have done everything to make my little girl talk. I mean, how can I hear her say, “I’m in agony because I can’t speak” and not try something? The data may say only one percent, but if that one percent is Elizabeth, that’s all I need, and she wants us to keep trying.

FAW: For Religion and Ethics NewsWeekly, this is Bob Faw in Northern New Jersey.