Cross-post from NF Endurance Team blog: Why Gabe Will Always Be My NF Hero

It’s a rare photo in which Gabe appears depressed. He was known for his boisterous, charismatic personality. But, from the time he left home for college, he struggled with depression. This photo was taken at my husband’s graduation from a pastoral training program in June 2004. Gabe would have just finished his freshman year at Wheaton College in Illinois.

I write about his depression because, as Endurance Team members, we are focused on overcoming and suicide seems like the antithesis of that. One thing I’d really like to accomplish through my involvement with the team is to help others overcome faulty ideas about depression and suicide. Ideas that I myself once held.

Not long before Gabriel died, I joined the CTF group on Facebook. A young woman posted a comment on the group wall about studies linking NF to psychiatric difficulties. I didn’t think much about it until after Gabe died. Then I began doing research and found one of the studies she may have been referring to. Here it is from PubMed:

Neurofibromatosis type 1 (NF1) is often associated with psychiatric disorders, which are more frequent in NF1 than in general population (33% of patients). Dysthymia is the most frequent diagnosis (21% of patients). There is also a high prevalence of depressive mood (7%), anxiety (1-6%), and personality (3%) disorders. The risk of suicide is four times greater than in the general population. Bipolar mood disorders or schizophrenia appear to be rare. The impaired quality of life associated with NF1 may play an important role in the development of psychiatric disorders. Quality of life assessments may help to identify a population at high risk.

Dysthymia can be defined as depression; despondency or a tendency to be despondent. It certainly describes Gabe at increasingly frequent intervals in the last year of his life. In another study, researchers found no link between the severity of familiar NF symptoms and the severity of psychiatric ones, indicating that something neurological might be going on rather than simple despair over the condition itself.

Since 2002, I have written for a magazine called Christianity Today. One of my articles was about Gabe and a couple others mentioned him. Because I had encountered a good deal of both ignorance and empathy after his suicide, I wrote about his death for the magazine. You can read that article here. It traces a bit of family history, does some education and poses the possibility that Gabe was suffering from bipolar disorder, which a couple of mental health professionals suggested after reading his suicide notes and journal entries. I’m ambivalent about this post-mortem analysis though, because the impulsivity that correlates with his attention deficit disorder combined with his undiagnosed dysthymia could be mistaken for bipolar.

Long before I had a thought about any of this, I wrote about Gabe’s NF in Christianity Today. That article was an investigation into human embryonic stem cell (hESC) research. Through it, I met my friend and NF Endurance Team partner David Brick. David is an hESC researcher at Children’s Hospital of Orange County, CA. When we were training for the Long Beach Half Marathon last year, David did some reading of his own on NF. He found something about the involvement of mast cells in NF. Mast cells are also indicated in asthma and allergies. This got me wondering if Gabe’s severe asthma might also have been a function of his NF. Instead of suffering from three separate diseases—NF, asthma and depression—was he really only suffering symptoms of one nasty disorder? I’d like to know the answer to this question.

The point of my writing about this here is both to alert CTF to these possibilities and to say that Gabe was for all of his life a true NF Hero. He overcame challenges that many of us will never face. The father from whom he inherited neurofibromatosis never acknowledged him and chose not to be a part of his life. He dealt with race issues as well, and was frequently sick and isolated with asthma. NF was always in the background as a concern. And yet, Gabe was incredibly accomplished. You can read about his many accomplishments here.

In one of his suicide notes, he wrote that as much as he kept trying to “pull himself up into the world of real people,” he felt dead inside. That feeling is not failure or a lack of courage; it’s a symptom of clinical depression. A symptom that he did not recognize had a treatment. A symptom he hid well in his lifelong habit of being an overcomer. A symptom I did not understand.

For the sake of others suffering such symptoms, I want to challenge the NF Endurance Team and its members to recognize that our message shouldn’t exclude those suffering from mental illness. Death by suicide is a preventable tragedy, not a lack of character. While we want to be careful not to romanticize or idealize those who die by suicide, we also want to remember that the vast majority of people who take their own lives die from mental illness that is no fault of their own.

So, here’s to my NF Hero, Gabriel Gifford Scheller!

Update: The NYC Half Marathon is just 10 days away and I’ve only raised $350 of my $1000 goal. If you’d like to help me answer the question posed in this post, you can support my efforts here, or you can send a check to: The Children’s Tumor Foundation 95 Pine Street, 16th Floor, New York, N.Y. 10005.

Racing for Research Again!

            

 

Guess who’s walk/jogging for neurofibromatosis research again? You’ve got it! I landed a coveted spot on the NF Endurance Team for the New York City Half-Marathon on August 16th, which doesn’t leave me much time to train or fund raise. If you helped us raise more than $4500 last year, thanks! If you weren’t able to give then and are able to now, here’s a word from team coordinator Bob Skold on why you should go ahead and write that check:

Recent advances in NF research are moving us significantly closer to reaching the goal of FDA-approved treatments for neurofibromatosis (NF). Research grant monies are now being used to fund basic and translational research with an eye on developing drug therapies.  Dr. Bruce Korf, one of the foremost NF research scientists states, “We now more or less understand the activity of the NF gene in the cell and are beginning to use that information to develop new treatments. I believe we’re at a point where we can look forward to effective treatments for NF1, NF2 and Schwannomatosis in the reasonable near future.”

The NFET is the largest CTF program funding NF research; indeed all donations to the NF Endurance Team are restricted for use in the CTF science and research programs. The NFET continues its commitment to advancing NF Research, now providing close to 1/3 of the funds to support the annual CTF research budget.  Following last year’s record $1.2 million raised, we are pleased to continue with this level of projected funding and to apply team donations to partially fund promising and top-priority CTF research initiatives in 2009.

For more specific information please go to our Team Fundraising Dollars at Work section on our Team web page. Our Team’s fund-raising success is an investment that can offer a world of possibilities to someone with NF. We are helping solve the NF Puzzle one mile at a time, one clinical trial at a time, one potential drug therapy at a time.

In fact, the New England Journal of Medicine just published a study that promises hope for NF 2 sufferers, like Bob. He has lost most of his hearing from the disorder.

I’ll keep you posted as to my progress. I hope to raise at least $1000 and to better my time from Long Beach by at least 30 minutes. You can get to know some of my team-mates at the team blog. I’ll be contributing there as well.

Here’s the link to my fund raising page. All you need to make a difference is a credit card and a willing heart!

Here are my previous posts on NF.

Beauty By Any Means Necessary

My latest post is up at Her.Meneutics. It’s called “Is it a sin to nip and tuck?” and was reclaimed from an article I worked on in 2007 that never made it to print. I offer the original here because my sources* made many points worth considering and because I think it’s a really good piece of work.

The photo above is of my sister Connie Smith before cosmetic surgeons created fingers for her from skin on her thigh. Connie was interviewed for this article. Living in Orange County, California, inspired my interest in the topic; Connie’s embodied experience informed my thinking.

“Beauty often wins love. It just does,” write Karen Lee-Thorp and Cynthia Hicks in Why Beauty Matters. No wonder women, and, increasingly, men are willing to endure the pain and risk of elective cosmetic surgery to attain it. New York Times reporter Alex Kaczynski states it bluntly in her cosmetic surgery expose’ Beauty Junkies. “In the end it all comes down to sex. … We are looking for love. And we will accept lust.”

Few admit this with the aplomb of Cena Rasmussen. This former model readily confesses that her cosmetic surgery addiction was fueled primarily by the bliss of turning heads. By her own admission, Rasmussen has spent years looking in the mirror. More often than not, she has seen reason to improve the image that stares back at her. Rasmussen was twenty-seven years old when Palm Springs, CA, cosmetic surgeon Razi Mazaheri first sculpted her flesh. He was dating Rasmussen’s friend and she was envious of the friend’s evolving, surgically-enhanced appearance.

In one transformative day, Rasmussen had breast augmentation, rhinoplasty, cheek implants and an eye lift. The breast augmentation didn’t heal properly and had to be redone almost immediately. In fact, one-quarter to one-third of breast augmentations will require additional surgery, according to Kaczynski and the FDA.

For Rasmussen, aesthetic surgery would become a biannual ritual that continued for two decades. There were more rhinoplasties, breast surgeries and lifts—eyes, face, neck—and non-surgical procedures as well. The regimen ended with a hyalauronic acid peel in 1999 that burned the skin on her face so badly, she says it left her looking like a “freak of nature.” Since then, Rasmussen has sworn off Mazaheri and has had nothing but $4000 worth of laser treatments to reduce the scarring. Still, she remains undaunted and is planning another face lift—her third, or is it the fourth? She can’t recall.

Racing into the Future

Rasmussen may represent an extreme in the use, or what some might call abuse, of cosmetic surgery, but the trend has been growing exponentially. In 2006, according to the American Society for Aesthetic Plastic Surgeons, Americans spent just under $12.2 billion on 11.5 million surgical and non-surgical procedures.

That’s a 446 percent increase from 1997. Surgical procedures increased by 98 percent and non-surgical procedures by 747 percent. Liposuction, breast augmentation, eyelid surgery, abdominoplasty and breast reduction were the top surgical procedures in 2006, while Botox injections, hyalauronic acid, laser hair removal, microdermabrasion and laser skin resurfacing were the most popular non-surgical techniques.

Ninety-two percent of patients were women, but men had nearly one million procedures. Forty-seven percent of patients were aged 35-50, 22 percent were 19-34, and 25 percent were aged 51-64. Ethnic minorities made up 22 percent of the patient pool.

Sculpting flesh is just the latest in millennia of questionable beauty-enhancement practices. The use of mobile x-ray machines for hair removal early in the last century is another. By the 1930s, the technique seemed “firmly entrenched,” writes Teresa Riordin in Inventing Beauty. She says women appear to have been “either ignorant of the dangers or simply willing to ignore them, given the ease and effectiveness of the treatment.” Sound familiar?

According to Riordin, women have long been collaborators and profiteers in this business. From the mid-nineteenth to the mid-twentieth century, for example, women received one-third of all U.S. patents, but in the category of pre-surgical breast enhancement (“falsies”), nearly two-thirds of patent-holders were women.

So what is a Christian to think about elective cosmetic surgery? Is it a sin to get a nip and tuck? Depends on whom one asks. I asked a variety of professionals and lay people. Their answers are an eclectic brew.

Choice

Lilian Calles Barger, author of Eve’s Revenge, says the choice to have cosmetic surgery is not a free one. “If you tell me, ‘my mother had cosmetic surgery. She’s a very independent woman. She really loves God and she wants to do this, and this is her choice,’ I say, ‘This is not a free choice. This choice is under duress.” Barger describes the phenomena as “appalling,” “gut wrenching,” “fundamentally wrong,” “a failure of the imagination.”

“The body is not just a hunk of meat,” she insists. “The body is significant in Christianity. The Bible talks about how we are to offer our bodies as living sacrifices to God. The question is what are we offering our bodies up to when we do that?” Her conclusion is that we’re offering them up to “false beauty and to cultural norms that we should be challenging,” but adds, “so that is where you can be compassionate, because you can understand that sin is not the sinner by themselves. It is collaborative, communal, reinforced. We support each other in this.”

Barger’s claim was born out in interviews with several cosmetic surgery patients.  In nearly every interview, individual choice was held out as a trump card, but all the women made their decisions within the context of relationships both personal and professional.

Therapeutic and Spiritual Perspectives

A disconnect between body and Spirit emerged in the reasoning of two patients who said body sculpting decisions are spiritually insignificant. “I don’t think it is a spiritual issue in any way,” says Rasmussen. “I personally believe that when we die, we’re going to have a glorified body that’s not going to be physical in any way. So what does the Lord care what we do to our skin?” Rasmussen explains that she both saved for her procedures and tithed faithfully throughout the exercise of her habit.

A fifty-something patient who asked not to be identified has had eye lid surgery, a chin implant, a mini-face lift and Botox. She says that as she struggled with the idea of tampering with the body God gave her, she sensed Him saying, “My beloved, you’re beautiful. You don’t need to do this.” She doesn’t believe, however, that tuning out the voice of God was sin. What matters, according to this patient, is “where your heart is.”

Cissy Brady-Rogers is a Pasadena therapist who has had a mastectomy, but no reconstruction after breast cancer years ago. She says that our culture “sets women up to feel shame about our bodies.” Body shame originates at home where children are not taught what to do with developing bodies and sexual impulses. It is then reinforced in school and through the larger culture. This coincides with what Brady-Rogers calls “disembodiment”—the phenomenon by which a subject looks into the mirror and sees that he or she does not measure up to cultural ideals and then comes to view their body as an object in need of repair rather than simply “me.” She says those considering aesthetic surgery would do well to heal the cause of their discontent (shame) rather than treating symptoms surgically.

Sociologist Philip Rieff talked about this disembodiment as “the triumph of the therapeutic” in his landmark 1960s book of the same name. It is a view of self as patient to be cured that he believed had replaced religion as the defining cultural narrative. He wrote, “That a sense of well-being has become the end, rather than a by-product of striving after some superior communal end, announced a fundamental change in focus in the entire cast of our culture—toward a human condition about which there will be nothing further to say in terms of the old style of despair and hope.”

For Christians walking out faithful body stewardship in defiance of this fundamental change, Brady-Rogers (who holds a Master of Divinity degree along with her other credentials) offers another narrative. She says patient-consumers are trying to figure out how to save themselves, just like the Galatians were, and in the process are biting and devouring one another by increasing the social pressure on all of us to conform to false ideals. “There is always going to be some law, some culturally offered avenue to save ourselves, to make ourselves okay, to fix what’s not working.” What Paul said is that it’s not going to work. Christ is the only one who can save us. “We are free to have plastic surgery. There is not a biblical law that says, ‘Thou shalt not have plastic surgery or drive a BMW,’ but what the Scripture says is: do not use your freedom as an opportunity for self-indulgence, but through love serve one another.”

For a woman contemplating aesthetic surgery, she advises, “I would like her to have a group of soul sisters who could support one another in becoming who they are in Christ, and support her in a process of discernment about that decision, not as solo journey. That may be part of the problem; too many women are making these decisions in isolation from other women.”

Idols and their Denouncing Prophets

Although the pursuit of beauty and the power it wields are timeless, a plethora of television makeover shows has normalized the triumph of both the therapeutic and the pornographic. Affluence and materialism, improved surgical techniques and doctors fleeing managed care realities for a cash business have all kept the engine humming along in the direction of more medical intervention to tame unwieldy flesh, according to Kaczynski.

In a 2004 New Atlantis article, “The Democratization of Beauty,” Christine Rosen wrote, “Cosmetic surgery … feeds our envy of those who embody nature’s most powerful but fleeting charms—youth, strength, beauty, and fertility. Its supporters praise its ability to change lives and its critics denounce it as the expression of our society’s worst impulses.”

As Christians reach for the charm, it’s these worst impulses that Hans Madueme, M.D., a fellow at the Center for Bioethics and Human Dignity, insist pose the greatest danger.

He calls the trend “deeply depressing” and says it’s one more area of American materialism that shocks his African family when they visit. The intuitive “yuk” reaction some Christians have towardaesthetic surgery is instructive, says Madueme. It tells us where the culture is moving, and reveals our loves, desires, idols and lusts. He suggests three “functional idols” that come into play with aesthetic surgery: youth, beauty and money. Consumers idolize youth and beauty, while medical providers exploit patients “inordinate desires” as a function of money idolatry.

Gary Churchill, a suburban Chicago facial plastic surgeon and aesthetic patient, offers a different perspective. He believes God directed him to a career that overwhelmingly consists of making women look and feel younger and more beautiful. Churchill was deeply offended when a fellow churchgoer suggested his work is incompatible with his faith. He takes a minimalist approach to surgery that leaves patients looking “refreshed” rather than altered.

Scot Rae, a bioethecist at Talbot School of Theology in La Mirada, CA, had an up-close and personal introduction to the world of cosmetic surgery when his wife Sally was having breast reconstruction after a double mastectomy. Although Rae was shocked to see young women in the surgeon’s office perusing catalogues that advertised buttocks implants, he strikes a middle ground.

Rae says Christians must see medical technology through a proper theological lense. He says God embedded his wisdom into creation through general revelation and that technology is “one of the primary ways that human beings unlock and apply God’s wisdom in the continuing quest to subdue the earth.” Rae allows that this quest was complicated after the fall, but says the three Ds—death, disease, and decay—were brought into the world by sin, and, as such, are legitimate targets for alleviation through technological means.

Like Madueme, Rae believes our intuitions are helpful, but sometimes in need of re-education. “They give us sort of yellow lights, but not necessarily red or green.” He offers a three-fold grid for evaluating aesthetic surgery. First, he says,” We are not our bodies, but we don’t devalue the body.” Second, “Medical technology, in general, to help alleviate the entrance of the effects of sin is a part of God’s common grace. And I think you can make a very good case that aging is a consequence of sin.” Third, “There’s a dynamic interaction between the soul and the body. So that’s why I think it makes sense that both men and women who have a change in their bodily appearance can feel better about themselves, and vice versa.” He concludes, “I think the bottom line is that you get principles and parameters out of Scripture and those form the fence around the field in which there’s freedom to make decisions.” If his eyelids were to droop in ten years, Rae says he would consider a nip and tuck.

Marketing toward Insecurity

To those who suggest that cosmetic surgery is marketed toward women’s insecurity, Ray Anderson, senior professor of theology and ministry at Fuller Theological Seminary in Pasadena, CA responds, “We need to look at it much more realistically, that it’s on a continuum. It’s on the same continuum as other aspects of embodied cultural life that effect our self-image….The solution to that [marketing towards women’s’ insecurity] is not to demonize an industry, but it is to revitalize the soul, the self in such a way that one is free to make use of products, services, opportunities within responsibility without having to be branded in ones own mind at least to be capitulating to that culture. We have to be strong enough so that Christian women now need to be socialized in the Christian community in such a way that they are able to make good choices with regard to products and opportunities to enhance their appearance and self-esteem within their culture.”

Anderson’s son-in-law Gregory Evans is chief of aesthetic and plastic surgery at UC Irvine Medical Center in Orange, CA. His practice is equally divided between corrective and aesthetic surgery. Evans says, “We all as physicians help people, but our area of the field is really trying to focus more on quality of life issues. … So one day a hand, another a cleft lip, breast reconstruction, injecting Botox around the eyelid—so we’re involved in the whole facet of a person.” Evans acknowledges the potential for exploitation, but offered a four page code of ethics from the American Society of Plastic Surgeons as evidence that his board is serious about combating unethical advertising practices fueled by greed.

The only board certifications Kaczynski trusts are those offered by the American Board of Plastic Surgery and the American Board of Medical Specialties.

Anne Brattli is an aesthetician and salon owner in Sarasota, Florida. Brattli found out the hard way that not all board certifications are equal. Ignorant of uneven licensing practices in the industry, she briefly went to work for Kurt Dangl, a practitioner who was later featured on 20/20 and in Beauty Junkies for his part in the death of a breast augmentation patient whose anesthesia was administered by an unlicensed “nurse.”

Brattli says Dangl offered free surgeries to employees after four months of employment. At first she considered a tummy tuck or liposuction. But after witnessing the grisly realities of the operating room (which were visible from the break room where employees ate their lunch), Dangl’s arrogance and myriad grotesque complications, she changed her mind. Eventually she learned that Dangl’s primary training had been in dentistry and took an early and permanent maternity leave.

Brattli has been examining women’s faces under a high-powered microscope for a decade. She identifies a nagging problem with medically enhanced beauty. “When you’re talking to someone who’s had Botox and they smile at you, they don’t look sincere and you can’t put a finger on it, but it’s because they’re smiling at you with their mouth and not with their eyes. When you get a person who smiles with their eyes and their mouth, you feel like they’re genuine. With Botox, it doesn’t matter if they’re genuine. It just never reaches their eyes.”

“Sooner or later a person that resorts to some artificial way of delaying aging or overcoming some perceived abnormality is going to have to deal with the fact that you’re going to have to live with what you’ve got,” concedes Anderson, who, at 80-years-old, is still dying his hair and beard dark brown.

Wisdom from Tarnished Humanity

Some women, like Connie Smith, never have had a choice about the bodies they inhabit. Smith was born with multiple birth defects [her term of choice]: congenital constricting bands that cut off most of her fingers at or below the knuckles, a clubbed foot and webbed toes. With sponsorship from March of Dimes, cosmetic surgeons created digits that have served her well for more than 40 years. Perhaps it is women like her, Brady-Rogers and Sally Rae who have the most to teach us about living within our imperfect, aging bodies.

Smith is a homemaker and is divorced from her husband. Facing the idea of mid-life dating and re-entry into the job market, she has no plans for medical enhancement. She feels the same cultural pressures that others do, but says when she feels good about other areas of her life—particularly her relationships with God, family and friends—her birth defects don’t bother her or others. “When I’m feeling good, I project an air of confidence, she says, “My hands are the last things on someone’s mind; they are looking at my face or my body, or they are listening to my words. My hands are irrelevant. When I project insecurity, I feel like some people treat me like I’m invisible. They’re looking at me in a different way.”

Transcendent Pursuit

Rieff and Kaczynski may be correct that the therapeutic and the pornographic have triumphed. The theologians may be correct that technology can be either used responsibly or abused in a Christian context as it alleviates the effects of the fall. Feminists and therapists may be correct that the industry exploits women’s greatest insecurities and culturally induced shame. But there’s also something uniquely American and Protestant in the wholesale rush to embrace medical enhancement.

David Brooks describes this strain of perfectionism in American life in his book On Paradise Drive. He writes, “Unlike some other bourgeois nations, we are also a transcendent nation infused with everyday utopianism,” a utopianism that “lures us beyond the prosaic world” and “gives us a distinct conception of time, so we often find ourselves on some technological frontier,” Of these ever-expanding frontiers, Brooks duly notes that we occasionally look back on them with regret.

As medically altered faces and bodies become more commonplace, will the era of Botox and DD breast implants be one we regret? Will the dangerous excesses be abandoned as x-ray hair removal machines were? One can only hope.

*Note: I have not updated the information in this piece. Source affiliations and cosmetic surgery stats may have changed.

Losing Religion; Finding Art and More

    

Yesterday, my husband and I attended a book signing by former L.A. Times  journalist William Lobdel . The signing took place at a book store in historic Clinton, New Jersey .  The book (Lobdell’s first) is Losing My Religion: How I Lost My Faith Reporting on Religion in America—and Found Unexpected Peace . We were late for the noon event because we love Sunday worship so much, we were unwilling to skip it or tear ourselves away before communion as we’d planned. I note this because it illustrates how good people who go through similar crisis of faith often come out of them with very different conclusions. 

Lobdell’s book is dedicated to both his family (a wife and four sons) and those wounded by "the church." He and I lost our [investigative] religion journalism virginity simultaneously, though not collaboratively. We both thought we’d do God’s work by reporting on (or informing on) the seamier underbelly of American Christianity … only to find that corrupt subjects and their supporters often seemed empowered by the exposes’ written about them while we and their victims were accused of being tools of the devil.  

I read with interest his article on Trinity Broadcasting Network when I literally lived around the corner from the media giant’s world headquarters. I had visited the glittery venue myself for an essay on television indecency , and was consequently excoriated for inferior faith by Joni Lamb , one of TBN’s competitors. I noted Lobdell’s disillusionment with evangelists Greg Laurie and Franklin Graham when he wrote the L.A. Times  essay about his loss of faith  that led to Losing My Religion . Lobdell wondered how these and other reputable evangelicals regularly appeared on TBN despite the blatant charlatanism and allegations of sexual misconduct by its founder. I wonder about such things too. I wonder also what these evangelists and their Catholic counterparts think their role is in the deconversion of the Lobdells of this world.

During the Q&A, I asked about his wife, whom he followed from evangelicalism into Catholicism. He said that as he began to come home with increasingly egregious stories about her denomination, she too abandoned faith. As to their four children, I don’t know. One assumes their parents’ deconversion means something to them.

"Crunchy Con" Rod Dreher  also reported on the Catholic pedophilia scandals (as a Catholic) and later converted to Orthodoxy . Recently he opined that it may indeed be better for some scandals to remain hidden because exposure is so destructive to the faith of ordinary believers. I disagree with him for reasons Lobdell mentioned yesterday. Complicit silence breaks faith with victims, both those who speak up and those who don’t. As Christians, we are especially called to care for "widows and orphans"—in other words, those most vulnerable to abuse (James 1:27 ). We are also called to walk in the light (1 John 1:7 ); I take this to mean a commitment to truth, not lies.

Lobdell said that he’d inevitably be contacted by other alleged victims after his stories would run. They’d be particularly incensed if a perpetrator publicly downplayed his guilt. Dreher writes that he’s been tempted to report on Orthodox corruption, but has decided that his own and his family’s faith can’t handle it. This is a luxury many are not afforded: police officers, pastors, teachers, nurses, parents, other idealistic religion reporters. I trust that God will make right in the end that which is not made right in this world. I eagerly await the day when mercy and justice will visibly kiss. I know they did so on the Cross, but I long for faith to be made sight.

On the jacket of Lobdell’s book is an endorsement by John Huffman, chairman of the board of Christianity Today  and a hero of Lobdell’s. Huffman writes,

William Lobdell has written a heart/mind/soul-wrenching spiritual autobiography. He has been inspired by followers of Jesus who have served their Lord with integrity. But he has also been devastated by observing, up close, the ugly, sinful underbelly of a critical, self-serving, institutional and individual religion. This is a must-read filled with warnings and wake-up calls to those of us in leadership positions. I respect Bill for his honest reporting of his odyssey to this point and pray that someday there may be a future book, just as honest, with a grace-filled conclusion.

Lobdell said that before he lost his faith, he requested a change of assignment at the L.A. Times . He "couldn’t take another story." When he publicly confessed his deconversion, he expected criticism. Instead he received 3000 emails, the most his newspaper had ever received. Many of them expressed empathy and support. Mine was among them.

I’m glad to finally possess a copy of Losing My Religion . I think I’ll find it oddly comforting. Along with it, I’ve just begun reading Becky Garrison’s 2007 offering, The New Atheist Crusaders and Their Unholy Grail: The Misguided Quest to Destroy Your Faith . Garrison is another journalist who shines her spotlight on holy dirt. In this book she turned it outward. Lobdell doesn’t fit within her field of vision though. He is more a Materialist than an anti-Theist and, despite the blazing A  logo on his blog, he sounds more pink agnostic than bright red atheist. Could there yet be a reconversion sequel in his future? Believing supporters are praying so. If our prayers evaporate unanswered, no harm done, right Bill?

In addition to these atheist tomes that coordinate nicely with A Secular Age , I’m reading a book Christianity Today editor-at-large Rob Moll sent me some months back. Rob and I became friends after he wrote an expose’ on my former church group  and was excoriated for it in the blogosphere. We lost our Christian [investigative] journalistic virginity together on that one. Although he’s much too young for such a heavy topic, Rob is now writing a book about Christian dying that will no doubt be excellent. His research led him to send Jeff and me Walter Wangerin Jr.’s Mourning into Dancing . I find most grief books beside the point, but I do pick this one up sporadically and glean some comfort from this pastor’s experience with those who’ve suffered devastating loss. Anger and disillusionment are common features of grief. People of faith cannot thrive there though. Nor can they thrive in a religious gutter. It’s good for them us to climb out and breathe air that’s fresh and clean.

I felt on the verge of tears through much of Lobdell’s talk. His story tapped into a place of deep pain for me. The betrayal. The lost idealism. The impact on my family (with loss of hope and life rather than collective loss of faith). He described the molestation victims he had gotten to know through his work as having "hollowed out souls." I resonate with that description. My mother and I were talking recently about that part of us that died with Gabe. How, in some measure, we’re just biding our time now until this life is over. Lobdell believes that when it’s over, it’s over. There will be no reunions. No justice. No mercy. I find those thoughts both unbearable and untenable. Unbearable for obvious reasons, untenable because there is too much mystery and beauty in the world to believe it has no ultimate meaning.

After the book signing and a simple, satisfying lunch of lentil soup and egg white/asparagus/Swiss cheese omelet, Jeff and I happened upon the Hunterdon Art Museum , which is housed in an old stone mill. The building itself is a work of art and the "Cutters" exhibit was literally inspiring. When we came home and showed our son photos of the various cut paper and steel art objects, he got out the previously neglected daily origami calendar I had bought him for Christmas and produced a collection of his own. I was thus prompted to thank God not only for art, but for honesty, comraderie and faith. These are gifts that science may describe, but which it cannot explain. Sorry Bill.

 

Update: The Library Journal description of Mourning into Dancing as found on Amazon.com :

Wangerin, a Christian minister and imaginative theological writer, provides a splendid description of death, grief, and the feelings of those who mourn the separation. Wangerin includes four types of death: the primal fall or original sin over which human relationship with God was broken; the numerous "deaths" we each suffer on earth, as typified by the biblical story of the prodigal son; individual bodily death; and "dying absolute," or spiritual death. His primary focus, however, is the small deaths in daily life as typified by one family’s grief. Wangerin depicts human feeling convincingly; his theology that all death is related to the first (primal fall and original sin) supports his hopeful and confident faith in the purpose of grief as leading to renewal, healing, and resurrection. For public and seminary libraries.

Update 4/8/09: My review of Losing My Religion is here, at Her.meneutics .

The Fragility of Truth and Other Inescapable Facts

Let’s get this out of the way first: Truth itself is not fragile; our possession of it, our interpretation of it, the role it plays in our societies is fragile. So said Simon A. Levin, the director of Princeton University’s Center for BioComplexity, as he was introducing Sarah Jones Nelson, director of the Princeton Project on Fragility

Jones Nelson began by saying that “Truth has faced adversity since antiquity and the known story of Truth as justice has taken many twists and turns along the way.” Her thesis is that “the quest for Truth is fragile,” like our species, because “the processes of verification are complex” and “irrefutable verification often exceeds our capacity to conceptualize what is even vaguely Truth—in dreams for example, or in the deep past. This is why authentic perception of Truth often eludes us.”

She posed a series of questions:

*What is Truth? That Pontius Pilate was more brutal than the New Testament conveys is historical truth by inference. “Corresponding records to reality may be inferred as credibly factual because credible evidence supports it [reality?].”

 *What about philosophical truth related to values? A beautiful narrative or ancient Hebrew poetry, for example. “Here the question of verification is more elusive than historical and scientific truth, which have testable means for verifying data.” But even in astrophysics, “observation is strongly theory dependent.” The magnitude of the universe makes it impossible to observe apart from theories of what one is seeing.

Then there’s the question of what facts really are. There is a “dichotomy between valuatively deductive statements of fact” and “factually deductive statements of value,” such that it makes Truth “more complex than the known facts that comprise it. The perception of Truth signifies two universes of reference.” “Robust categories of Truth require a robust conceptual language “… Logic and syntax are foundational to the formation of the disciplines. “New fields generate new concepts of fact value and the corresponding Truths are fragile until they are credibly understood and when necessary verified by inescapable data.”

Our speaker hearkened back to Plato and Aristotle for a case study. She said Aristotle and Plato held different conceptions of Truth, and although these conceptions created the “first world synthesis of Truth,” one must note that its moral conception included both slavery and the subjugation of women. “Social norms emerging from ancient cultures continue to inform the contemporary open question of justice and the perception of reality that Truth is a fragile goodness.” … Students at Plato’s academy came from families where educated slaves had taught them their history of the Trojan War and prepped them for their first class in which Plato would be denouncing Homer’s heroization of Odysseus, the consummate liar” and “perilous twists and turns when lying meant outwitting and surviving better liars, thieves, monsters and angry gods.”  She is “certain Plato was thinking of Homer when he banished poets from public” saying, “Pythagorean truth was just about all he could handle.”

We returned to Princeton, with our guide calling it the “Athens of the Eternal Now.” She posed three questions (with passing reference to others, such as those related to establishing the historicity of ancient manuscripts).

1. What is truth?

2.  What is goodness, justice, beauty?

3. What is love?

Classical Athens “indelibly invented formal categories of human experience” and the foundations of democracy are as “fragile as documents of antiquity.” But, Truth can be found [emphasis mine]:

1. “Democracy functioned publicly by means of consensus and agreement, in which the role of women was manifestly paradoxical.”

 2. “Consensus was built upon common persuasion in an inextricable unity of religion, politics and theatre. Belief flowed from the will of godesses and gods.”

 3. “Slavery was thought to be a manifestation of the cosmic order. ”

“Plato might possibly have understood mathematical truth, but seemed to have been misguided by many of our standards of justice, equality and the rule of law. Clearly some principles do and must change to accommodate ever more humane interpretations of cognitive, moral and natural law. Furthermore moral pluralism is a fact of historical truth, raising deeper questions for criteria for explaining identity and difference, for distinguishing good history from good metaphors and the ends and origins of any phenomena. Take the misguided application of Christian eschatology to Big Bang cosmology. In her view this is “as preposterous as Paul the Apostle telling [director of the Princeton Center for Theoretical SciencePaul Steinhardt how to do pure physics…” She attributes the problem to “ongoing category mistakes from which Galileo and countless others have suffered enough.”

She asked:

* What is scientific truth? The answer has evolved with new discoveries: general relativity, quantum mechanics, string theory,etc. “These matters prove there are deep limits of intelligibility defining the parameters of open questions.”

 * Is altruism rational? “How are group formation and identity internalized so that altruism becomes reciprocal, as good for self as others, as the Dalai Lama teaches in the traditions of ancient Buddhism.” “Poetry in Second Isaiah  is one of many examples from Hebrew Scriptures mandating universal law to care for what is other than the self ” It is “vindication of the unselfish.” She asked, “What does this say about the durability of altruistic values?”

 * What is moral truth? “We are asking whether or not it is viable to generalize reciprocal altruism on large scales. … Cooperation is fundamental to survival of the species. … We are seeing that cultural selection is a fragile phenomenon, but the institution of stable cultural practicing is robust on a small scale in courts of law and renaissance art guilds, for example … with strong constraints on membership, codified by statute. The resulting language of selective morals, of loyalty, of honesty stabilizes cultural selection groups where membership is identity … based upon trust, the single most important element of a good society. Fragile sensibilities can flourish in good faith.” [emphasis mine]

 * What is personal human truth? “The Fragility Group is engaged also in reflection on the fragility of human societies. Stable systems share an emerging process of adaptation. … Formal systems of adaptation are robust at all levels of complexity. … We examined the  history of cultural selection in which dynamical emergence occurs. For instance, in the practice of medicine, in a durable form of religious art and scholarship. This in turn raises the open question of causes for the emerging of Athenian democracy and theatre from which we can learn about the early mechanisms of psychology, as Freud did from Oedipus to Psyche.”

 * What is political truth? “[Political scientist] Maurizio Viroli… introduced the Fragility Group to Plato’s analysis on the “goodness of political institutions being fragile for two reasons. Because passions like ambition and avarice erode goodness. And because time erodes goodness by weakening memory and true knowledge of the self.” Civic love, agape, keritas [sp.?]. “Is a form of reciprocal altruism and self love consistent with love for your neighbor as commanded in ancient Greek, Hebrew and Roman manuscript traditions? Love is a virtue and a formal energy.”

“In politics,” she said, “human memory is a possession of Truth that can be destroyed by war, genocide, famine and torture.” eg. “trivializing the Geneva Convention.”  “By contrast our fragile acquisition of the Pythagorean Theorem, a durably beautiful truth, like music, unchanged by events, flourishes in memory as if by miracle.”

We all undoubtedly have open questions that require Truth gleaned from a multiplicity of disciplines. “We are witnessing a dynamical explosion of information with no predictable outcome as to how these fields will combine intelligibly, as the Internet makes the printed media ever more fragile.” Historian Anthony Grafton demonstated this fact to the group. “The Project on Fragility is giving birth to a renaissance of clarity and renewed understanding of interdisciplinary approaches to curricula. We are creating a remarkable level of intuitive coherence.” The goal is collaborative problem solving on a grand scale, the likes of which Jones Nelson says has never before occurred.

In conclusion, our prophet assured us that “Truth itself is robust. By contrast, possession of Truth is fragile” [emphasis mine], because “what we know we can forget,” eg. what we know about slavery and the Holocaust. “The imperishable task of remembrance must be protected by the inescapably durable fact that Truth itself is something sacred.” The “survival of the species” demands that the collaborative search for Truth continue. The alternative is “moral paralysis.”

With a nod toward students, she advised: “You needn’t believe in God to act with moral integrity. Nor does belief in the existence of God make you an imbecile incapable of rational thought simply because the proofs are inconclusive in the minds of others.  And if anyone says you don’t fit in because you differ, be a good skeptic and remember you’re right to take it as a compliment.”

As usual with these events, the Q&A was nearly as interesting as the lecture. The first commenter compared the talk to a romantic poem that he could not readily interpret. What was the point, he wanted to know. A mathematician noted that Truth in mathematics isn’t as absolute as people imagine. He said that in order to define Truth in mathematics, one must get outside its language. He called this a “sobering reality.”

A student then asked if the anti-intellectualism of American culture demonstrates the fragility of knowledge. He advocated a hierarchy of disciplines in regard to Truth. Of course, he wanted the empirical disciplines at the top and poetry at the bottom. Jones Nelson marginally agreed with his assessment. Fragility Project group member and Pulitzer Prize winning poet C.K. Williams was in the audience. I caught up with him at the reception. He disagreed with the subjugation of artistic truth to the empirical, as did I. One can find Truth in artistic forms that is obscured in empirical expressions.

A man to Williams’ right wanted to know if fragility is a problem or a solution. Obviously in the case of slavery, it’s a solution while in the case of Holocaust denial it’s a problem. Jones Nelson said the conversation itself is somewhat fragile, because there’s never before been one like it across disciplines. I find this claim difficult to take seriously. Perhaps she meant in a formal sense, one that requires sponsors and funding, which the group is seeking. The Vatican asked her to launch this project … long before Pope Benedict reinstated the Holocaust denier(s)… but after she had spoken at the Vatican about Holocaust denial.

Finally a student asked what my husband called the Philosophy 101 question: Does Truth exist at all?  Here Jones Nelson mentioned the Deconstructionists, sounding at first as if she was affirming them, even though she concluded by saying she believes Truth does exist, eg. historical Truth verifiable by archaeological evidence.  She unfortunately qualified this statement by saying that whether or not Truth exists for oneself is entirely subjective. I asked her later about the Deconstructionists, telling her that my philosopher friends tend to dismiss them outright. She acknowledged this and tied the early Deconstructionists to Holocaust denial. She relegated the “harmless” ones to the 1980s like bad hairdos. Leave it to us evangelicals and post-evangelicals to be 30 years behind the times in philosophy  philosophical fads, as well as just about everything else. Humility. We should be first in that.

For years, my husband has been advocating in private conversation just this approach to problem solving. He asked the speaker if the group won’t ultimately have to come to some consensus about Truth in order to accomplish anything tangible. She didn’t really seem to have an answer. In fairness, the question was asked over a delightful banquet of salmon, steak, asparagus, cheeses, chicken piccata, eggplant rollitini, raspberries, etc. and amidst a small crowd of inquirers.

The Fragility of Truth and Other Inescapable Facts. It’s a lovely title and a fascinating topic that was elegantly outlined. There was free food and, later, a martini crafted and named just for me. Not a bad way to spend an afternoon! Here’s to hoping the Princeton Project on Fragility leads somewhere.

The Short Term Future of Stem Cell Funding

 California Stem Cell Report appropriately opines

As California’s public universities are turning away students and state cash is being cut for projects ranging from research labs to affordable housing, the California stem cell agency is on track to give away $66 million later this month.

The awards will come following CIRM‘s handout of more than $19 million last month.

No one – except for those congenitally opposed to hESC work — is contending that all these millions are going to unworthy scientists or to dubious research. But the CIRM giveaways stand in marked contrast to what is happening to the rest of the state in the light of its $40 billion budget crisis.

If CIRM were, say, part of the state Department of Health, chances are good that it would not be able to spend taxpayer money so freely.

The disparity raises major public policy issues about the use of ballot initiatives to promote and protect various causes. Should the elderly and poor see their much-needed assistance and medical care cut while cash flows unimpeded, in this case, to researchers, some of whom are already exceedingly well funded?

A ballot initiative, Prop. 71, is just what created the $3 billion stem cell effort in 2004 – not carefully crafted legislation hammered out over months with all parties having their say in public. The measure was drafted in secret by CIRM Chairman Robert Klein (with the help of a couple of others he rarely acknowledges) and placed on the ballot with a signature-gathering effort that probably cost $1 to $2 million. (That is the most common way of placing an initiative on the ballot in California – hiring firms that specialize in such efforts and paying them on a per signature basis.)

It’s an especially timely thought given that President Obama made this oblique statement in his Inaugural Address:

We will restore science to its rightful place, and wield technology’s wonders to raise health care’s quality and lower its cost.

 … leaving both Ted Olsen and me wondering if he’s about to upend Bush on federal funding for Human Embryonic Stem Cell research  … when there ain’t no money for nothin’.  But then, there’s still Dickey-Wicker to contend with.

Thanks again to our newest NF heroes

 

These sponsors helped us raise $2,640 for The Children’s Tumor Foundation:

 

Mr. Jeff Scheller

Ms. Florence Anne Kohut

Mr. Aiden Long

Mr. and Mrs. Bruce C. Neary

Mr. and Mrs. John H. Oostdyk

Mr. Albert J. Stahl

Mr. and Mrs. Robert H. Speight

Mr. Roy Larsen

Mr. and Mrs. Bruce V. Koczman

Mr. and Mrs. James W. McCombs

Mr. Richard D. Kroll

Mr. Greg Cambeis

Ms. Kathleen Sommers

Ms. Katy Laundrie

Ms. Amy Zambrano

Mr. and Mrs. Richard Gifford

Mr. Rob Moll

Mr. Gary Gnidovic

Mr. and Mrs. Dan Carver

Mr. Richard Heffner

Ms. Dee Lamorte

Ms. Judy Scheller

Mr. and Mrs. Philip Benyola

Ms. Heidi Peck

Mr. and Mrs. Carleton W. Westerlund

Ms. Cherie Carl

Mr. and Mrs. Nicholas P. San Filippo

Mr. and Mrs. Robert A. Mack, Sr.

Mr. and Mrs. John J. Bogosian

Mr. and Mrs. Roger L. Faulkenbury

Mr. and Mrs. James J. Jensen

Mr. and Mrs. Michael Trapani

Mr. and Mrs. Mark Smith

Ms. Sara Mummolo

Dr. and Mrs. Gary S. Cuozzo

Mr. Tony Papalia

 

 

Here is the summary of another study that I’ll be including in my letter to The Children’s Tumor Foundation to encourage them to better educate and support families in regard to ALL possible outcomes of this debilitating disease.

NF1: Psychiatric Disorders and Quality of Life Impairment

Neurofibromatosis type 1 (NF1) is often associated with psychiatric disorders, which are more frequent in NF1 than in general population (33% of patients). Dysthymia* is the most frequent diagnosis (21% of patients). There is also a high prevalence of depressive mood (7%), anxiety (1-6%), and personality (3%) disorders. The risk of suicide is four times greater than in the general population. Bipolar mood disorders or schizophrenia appear to be rare. The impaired quality of life associated with NF1 may play an important role in the development of psychiatric disorders. Quality of life assessments may help to identify a population at high risk.

*Dysthymia — depression; despondency or a tendency to be despondent

Thanks again friends! May your generosity be returned a hundred-fold!

Long Beach 13.1

We did it … together! Our first half-marathon. Mike in 3:28:17; Chris and D in 3:42:09. Jeff manning the NF tent for 4:00:00+.

Total donations on our behalf to the Children’s Tumor Foundation$2145 $2170 $2220 $2345 $2370 $2490 $2590 $2640.

In honor of Gabriel Gifford Scheller.

John 25:11

Update 10/21/08: My original goal for the Long Beach 1/2 marathon was to raise $1000 for the Children’s Tumor Foundation. After Gabriel died, I increased our goal to $5000. Memorial donations in the amount of $1945 have been recorded in Gabriel’s name. Combined with our race sponsorships, we’ve raised a total of $4,435 $4,535 $4,585 for CTF. Again, many thanks to all who’ve given so generously!

Update II, 10/23/08: The NF Endurance Team slide show from Long Beach is up. Together our team of 20  raised $10,000, $2590 $2640 of it on behalf of Team Scheller.

Go Team Scheller!

$1810 $1830 and Counting!

Tomorrow is Race Day!

Wake Up Call 5 AM … Yikes!

Go Team Scheller!!!!!!

Donate Today!

Spiritual Evolution

 
Harvard Medical School professor George E. Vaillant was the speaker at yesterday’s UC Irvine Psychiatry and Spirituality Forum meeting. Vaillant is Director of Research for the Department of Psychiatry at Brigham and Women’s Hospital.  His research has involved charting adult development and the recovery process in schizophrenia, heroin addiction, alcoholism, and personality disorders. He is the Director of the Study of Adult Development at the Harvard University Health Service, which has prospectively charted the lives of 824 men and women for over 60 years. Vaillant has been at the helm for 30 of those years.
 
Vaillant titled his lecture Positive Emotions, saying that spirituality is another name for positive emotions and psychiatry doesn’t talk about positive emotions, religion does. The lecture wasn’t as thorough as I would have liked, but the book sounds intriguing.
 
Here are my notes:

1. Introduction

  • Negative emotions are about me and now, while positive emotions are future and other focused.
  • [Positive?] emotions are the unwelcome guest at the academic table. This truth is so dramatic that the leading text of psychiatry includes 1-600 lines about:
 
sin
terrorism
shame
anger
anxiety
depression
 
    but only
 
5 lines about hope
1 line about joy
0 lines about love
0 lines about compassion
0 lines about forgiveness
 
Vaillant had to delve into hymns, psalms and prayers to find such words. He says religion, for all its defects, allows us to pull positive emotions up into consciousness.
 
  • The average Fortune 500 company lasts 40 years; most family fortunes are gone after 3 generations; most nations after 300 years. The world’s great religions are all committed to compassion and unselfish love. All have lasted 1400 years or more.
  •  45 year olds-to-75 year olds with strong community involvement become less religious, more invested in grandchildren, etc. Same group experiencing bad life events that are not self-inflicted (eg. philandering, alcoholism), increase religious involvement.
  • Brain continues to myelinate until age 60. Parts that myelinate in adult life connect passions to fore brain and social judgment. Thus, 70 year olds have less trouble with depression, impulse control and anti-social behavior than people half their age. The heart and brain grow in simultaneous awareness.
  • Compare a golden retriever to a clergyman. Put both in a trunk. Drive around in the desert for an hour. Ask yourself: Which one will be happy to see you when you open the trunk? Maybe it’s not only humans that God constructed in his own image.

 

2. Mental Health Scales

The Four Fs (me focused) [did he mean 3 Fs and an L?]
Fight
Feel
Feed
Lust
 
PANAS (Positive/Negative Affect Schedule, positive emotions):
Interested
Excited
Alert
Active
Attentive
Enthusiastic
 
  • Induce positive emotions, scores go up; induce negative emotions, scores go down.
 
Positive Psychology (introduced 1999):
Happiness
Contentment
Good Cheer
Well-Being
Pleasure
 
  • No place for passion or joy on scale.
  • Freud thought awe was an infantile emotion.
  •  1943 Antoine de Saint-Exupery: It is only with the heart one can see rightly; what is essential is invisible to the eye.
  • Don’t believe everything you think.
  • 1943 Autism recognized as a relational rather than cognitive ailment. Attachment is different from cognition.  

 

Vaillant’s Scale (unique):
Faith/Trust
Compassion
Hope
Love
Joy
Awe
Forgiveness
Gratitude
 

3. Case for Spiritual Evolution

Murder rate in 1300 50 times what it is today. In the 19th century, US spent more on defense than health care. Now inverted. In 1900, both the World Health Organization and Boeing 747 were equally unlikely dreams. Nobel Peace Prize and Olympics instituted.

 

  • Real Darwinian success evident in unselfish love.
  • Religion may kill many, but so do automobiles.
  • Religion is just as dangerous as new-fangled tranquilizers.
 
4.  Q&A

 

  • Hippocratic Oath can be summed up as: Don’t do unto others what you wouldn’t want them to do unto you.
  • Love and service are vital to healing.
  • Found nothing in medical library about joy. One of the most powerful ways to produce joy is for a lost person to be found (peek-a-boo, sick person recovers, etc.). Not love affairs; affairs all about me.
  • AA meetings: more consistent hugs than anywhere else. Hugs heal, invite expression of “poor me’s.”
  • Psychiatrists: overpaid, overworked. [and yet, we’re grateful for the good ones]
  • 10 years hard data proves AA works better than psychotherapy for treating alcoholism.
 

Support NF Research

NF Endurance Team 2008

Guess who’s training for the Long Beach Marathon? Actually I’m settling for a half-marathon my first time out. My son Mike, some friends and I are doing it together. We’re raising money for neurofibromatosis (NF) research. The race is October 12, but you can invest in our effort now. To sponsor Mike, click here. To sponsor me, click here. (Be sure to watch the short video too.) Our goal is to raise $2500 each in memory of Gabriel Scheller, our NF hero.

 

NF Endurance Team 2008

NF Endurance Team 2008

It’s official. Mike and I have registered for the Long Beach Marathon to raise money for neurofibromatosis (NF) research. Now his six cycling friends and my one jog/walk buddy need to sign up. Mike has been training faithfully, while his mother has, well, been doing her best. Yesterday, I walk/jogged 6-7 miles, I’d guess.

The race is October 12, but you can sponsor us now. To sponsor Mike, click here. To sponsor me, click here. Be sure to watch the short video too.

Gabe was diagnosed with NF when he was 6 months old. Some of his closest friends didn’t know he had this disease, even though he lived with all these symptoms:

  • cafe-au-lait spots
  • macrocephaly
  • skull deformities
  • scoliosis
  • 100+ pea-sized sub-dermal tumors
  • a spattering of topical skin tumors
  • Attention Deficit Disorder
  • Depression

 

If you loved Gabe or were impacted by him and/or his work, why not support us in this effort? He is our NF Hero. Perhaps you’d even like to join us on October 12. If so, register here and let us know. Our goal is to raise $5000. We’d like to see more research into the link between NF and mental illness and will be communicating this desire to the Children’s Tumor Foundation.

Many blessings~