A Fitting Tribute

Opening Ceremony at The Overnight Walk, NYC, 6/4-5/11
Over the weekend, my niece and I joined 2000+ suicide survivors for the 18 mile Overnight Walk through New York City. A record $2.5 million was raised for suicide prevention, research, and survivor support services. Our team contributed more than $5000 to the pot.

Lumaire dedicated to Gabe at The Overnight Walk, NYC, June 4-5/11

People assume, I think, that I write about Gabriel’s suicide and raise money for causes related to it, because doing so aides in my healing, or redeems the horrific reality, or brings meaning to my life. In reality, exposing this wound exacts an emotional toll that I’m increasingly unwilling to pay.

I shouldn’t be writing about my son killing himself; I should be writing about how he’s taking the world by storm with his many talents and passions.

What? by Gabriel G. Scheller

I’m sure Mariel Hemingway would rather talk about her grandfather’s literature than his suicide too. But there she was at the Overnight Walk speaking eloquently and tearfully to the crowd about her pain, and filming a documentary about suicide, because, I think, she recognizes the danger to the rest of her family (including her daughter) in not talking about its legacy of suicide.

She wants it to stop.

Mariel Hemingway and her daughter at The Overnight Walk, NYC, 6/4-5/11

In the last four years, with the help of both loved ones and strangers, I’ve raised somewhere in the neighborhood of $10,000 for causes related to Gabriel’s death, not because it’s fulfilling, but because I felt compelled to do something to stop the pain for others.

NF Endurance Team 2008

Now don’t hold me to this statement if I change my mind, but I think I’m done with public fundraising campaigns that draw attention to my loss. This means no more big events that require $1000 minimum fundraising goals in order to participate, unless I can afford to write a $1000 check myself. It was incredibly difficult, for example, to tell my neighbors that I was hosting a block party to raise money for suicide prevention because my son killed himself.

Overnight Walk Block Party 026

It was a great party, but I really hated exposing myself like that. I don’t want to do it again.

Don’t get me wrong. If you’ve given to one or more of my fundraising campaigns, I offer my sincere gratitude. Your money was well spent, so well spent in fact that I hope you’ll keep giving to The Children’s Tumor Foundation and the American Foundation for Suicide Prevention until neurofibromatosis and mental illness no longer threaten the well being of those whose lives they touch.

However, instead of continuing to focus on Gabriel’s death, in my new position as News & Religion editor at UrbanFaith.com, I’ll honor his life. He cared deeply about the issues Urban Faith reports on, so I think it’s a fitting, subtle tribute to work on these issues too.

I’ll be updating the site too frequently to post links to my articles as they’re published, but I’ll try to post a weekly update. Here’s what I’ve done so far:

There’s much more to come.

As you read my words at Urban Faith, it can be our little secret that they’re written for Gabe.

On the Bridge: A Conversation Between a Pro-Lifer and an Embryonic Stem Cell Researcher @TheHuffingtonPost


When I investigated human embryonic stem cell (hESC) research for Christianity Today in 2005, the debate about the ethics of the science was heated and tense. I was a pro-lifer who’s child had an incurable disease. What I wanted to know was: what would I do if hESCs could cure my child’s Neurofibromatosis? As part of that investigation, I spent ten days attending a National Institutes of Health (NIH) training course for post-doctoral scientists at Children’s Hospital of Orange County (CHOC) in Southern California. Every other attendee was there to learn how to create and grow stem cell lines from five day old human embryos (blastocysts). Because it was an NIH funded course, no new embryos were destroyed to grow the lines the researchers manipulated.

I was the invited guest of Phil Schwartz, who is both director of the Human Neural Stem Cell Resource at CHOC and a Christian opposed to embryo destruction. Schwartz ran the course with Jeanne Loring, director of the Center for Regenerative Medicine at The Scripps Research Institute in San Diego, California. Loring is a cell biologist who has been working with hESCs since 1997. Before that, she worked with another Christian, Francis Collins, on mapping the human genome. She describes herself as a “cultural Catholic,” but practices no religion and has never had any doubts about the ethics of her hESC work.

In 2008, Schwartz invited me to attend the course again and I did. The political tenor had changed considerably with the advent of induced pluripotent stem cells (iPSCs), which are derived from adult somatic cells and thus are not controversial.

Writing on the Center for Genetics and Society’s blog, Project Director on Biotechnology Accountability Jesse Reynolds predicted,

“With the end of stem cell research as a political vehicle, its advocates are likely to temper expectations. They’ll not just move out the goalposts on the timeline towards treatments, but the touted uses of stem cells will shift from potential cellular therapies to models of human diseases in Petri dishes and better drug testing methods. These new purposes will win fewer votes than ‘your own personal biological repair kit,’ but they are also much more realistic.”

And yet, here we are again, with advocates lamenting a lawsuit that brought a temporary injunction against NIH funding of hESC research. (The injunction was quickly reversed.) So, I called Jeanne Loring and asked her thoughts on the lawsuit and the current state of the field. Here’s that interview, edited for space:

SCHELLER: What do you think of the legal situation?

LORING: For scientists, the embryonic stem cells have been the basis for all of the research, including the induced pluripotent stem cell research. Also, they’ve had a lot of influence over adult stem cell research, although I don’t think those guys would admit it. … There’s a gradual growing excitement … because of what you can do with them. So we have people with all sorts of different skills that are all focusing on hESCs or iPSCs or stem cells in general. What the legislation does is it puts a halt to an awful lot of research that’s ongoing right now. Maybe in another ten years, it wouldn’t have such an impact because people would have already done all these things and it would all be in the hands of companies, but right now it’s in a really frantic research phase. We’re discovering things all the time. It’s the worst possible time to have money taken away.

SCHELLER: Who brought case?

LORING: A researcher who used to be at [Harvard] MIT. Harvard [MIT] denied him tenure and he went on a hunger strike. That’s what he was famous for. I knew I’d heard of him before.

SCHELLER: Was he opposed to the research on ethical grounds?

LORING: There are two people: a woman from Louisiana, I believe, opposing the research on ethical grounds and this guy. In legal terms, in order to get an injunction, you have to show financial harm. He said he was being financially damaged because hESC research was unfairly competing with adult stem cell research at NIH. It’s outrageous. It’s foolish. It’s silly. Because research funded by the NIH is funded on merit and there’s no one pot for all stem cell research that gets divided up differently. There’s a big pot for all sorts of research and depending on the stage of the science and the urgency of the need, the research dollars go in a lot of different directions. Adult stem cell research gets far more funding than embryonic stem cell research and it continues to, mostly because it’s already well established.

SCHELLER: Do you think the spinal cord hESC therapy human trials that have been approved by the FDA [the first of their kind] at the Reeve-Irvine research Center in Southern California will work?LORING: I don’t know. Scientifically, I think there’s a possibility. As a scientist, what I really want are for those cells to not harm anybody because it’s a Phase One trial and the object of a Phase One trial is to show that it doesn’t do any harm, and that will be a huge step forward if they can show that.

SCHELLER: In 2008, we heard from Geron Corporation funded Oxford scientist Paul Fairchild that the immune challenge with hESCs wouldn’t be overcome. Has that changed?

LORING: No. They are going to have an immune problem, but they’re going to treat it like an organ transplant. They’re going to use the minimum amount of immune suppression that they can get away with. … This is not a fix for immune rejection. I just got a grant to develop of way to trick the immune system into thinking transplanted cells are theirs. There are several projects going on along those lines. The cells themselves are not going to move into another body and not cause a reaction, which is actually good because if your immune system is not aware of something and that cell became cancerous, you couldn’t do anything about it.

SCHELLER: California Institute for Regenerative Medicine (CIRM) co-founder Robert Klein is the father of a diabetic child. I’ve never understood the trade off of insulin dependency for immune suppression that diabetic patients would potentially make if hESC therapies become available. Do you grapple with that at all?

: Sure. Ranking diseases is always difficult. A lot of what diseases are going to be treated with cell therapy really depends on a balance between how serious they are and how deadly they are and how easily they can be treated with cells. So, diabetes seems to be, relatively among all diseases, probably easier than most to treat, but it’s not life-threatening. So you have to get a really good therapy, but definitely require immune suppression before you would actually use it.

: So there’s a benefit/risk analysis?

LORING: Yeah, that’s right. So there is progress to be made. All this immune system stuff is sort of catching fire now, so people are not going to just stand by and let the immune system reject everything. They’re going to try to modify the immune system, not with immune suppression, but in a way that will last. Now people are also encapsulating cells so that the immune system can’t get at them.

SCHELLER: They’re still able to function when they’re encapsulated?

LORING: Yeah, in diabetes they certainly are because all they have to do is react to glucose in the blood and make insulin.

SCHELLER: Last time I talked to you, you sounded more excited about iPSCs than hESCs.

LORING: I am more excited for a lot of reasons about iPSCs because you can make them from any individual. As far as the way they act in the culture dish, they’re exactly the same as embryonic stem cells. You have the same problems and the same advantages.

SCHELLER: Is it much harder to get them to turn into other cell types than it is with hESCs?

: No. It’s very easy to get them to turn into other cell types. They’re essentially equivalent. If you look at 100 iPSCs and 100 hESCs, you’ll find there are outliers in both groups–cells that are difficult or act funny. But on the average, among those 200 cell lines, you really couldn’t tell them apart.

SCHELLER: 2009 was the last NIH funded course you directed with Phil Schwartz. Is there no longer a need to train scientists?

LORING: My lab is still running courses. We’re doing it semi-independently and also for CIRM. They are more popular than ever. We modified them so we are actually offering them every couple of months because there are so many people in line waiting to take them.

SCHELLER: So it’s not the case then, as it was in 2005, that you have more cell lines than scientists to do the research?

: No, it’s not like that at all. People really want to get involved in this field. We still teach embryonic stem cell culture methods because that is still the fundamental technology that underlies all of this work.

SCHELLER: Do you need new hESC lines?

LORING: No, I don’t need to make hESCs. This is a dilemma. You make hESC lines from five-day old blastocystes that have been donated by people in in-vitro fertilization (IVF) clinics. I’ve been getting repeated frantic emails from people who want to donate their embryos. I don’t really have any need for them, but I’m feeling like I should start a bank. The alternative is throwing them away. Nobody’s going to adopt the embryos, so they’re paying to have them stay frozen and they want to see some good come of them. I want to start a bank. It’s just that I don’t have funding for it. I’m cooperating with an IVF physician who’s temporarily taking the embryos in. We definitely don’t need to make embryonic stem cell lines. There are probably 400 around now. All you have to do is call somebody and ask them for them.

SCHELLER: At the 2008 course, an IVF physician called his field “Cowboy Science” because of the lack of regulation. It seems to me that this lack of regulation may be a bigger ethical problem than hESC research because it creates the excess embryos.

LORING: I have no objection to increasing regulation of IVF. It’s like any medical practice. It shouldn’t be hurt by oversight.

SCHELLER: We also heard about the potential for exploitation of egg donors in 2008.

LORING: The egg donation issue in 2008 was very hot. That’s died out considerably with the advent of iPSCs because people were looking for alternative sources for pluripotent cells and now there is an alternative source.

SCHELLER: As you know, I first investigated this topic because my first pregnancy was unplanned and I didn’t believe I had the right to end it. My child was then born with Neurofibromatosis. So I had an ethical dilemma to think about when hESC research first emerged.

LORING: Yeah, I understand. I obviously don’t feel it in my heart, but I understand.

SCHELLER: How would you describe your ethical convictions about hESC research?

LORING: I find it completely ethical. I have absolutely no problems with it. It isn’t abortion, so my opinion about abortion is irrelevant. The fact that these embryos would be thrown away and not used for research, I think it would be unethical not to use them.

SCHELLER: You’ve never had any doubts?

LORING: I’ve never had a doubt.

SCHELLER: How long have you been doing this research?

LORING: I started in 1997 in northern California. I started my own company to make hESCs. I didn’t know then that there were so many embryos being thrown away every day. So it made me nervous to have embryos in the lab and I made sure that I got good cell lines out of them. It would still do that to me now. They are really precious, but if you can’t do anything else with them. I was interviewed by a reporter for a Christian newspaper maybe a year ago, I actually wanted to talk to this guy because I wanted to suggest that the churches should put up embryo banks because there’s no adoption for embryos. It would be like starting an orphanage. If they want to keep the embryos from being used for research or being thrown away, then they should set up a bank, a freezer somewhere and just keep them.

SCHELLER: And then do what with them?

LORING: Whatever they want.

SCHELLER: In other words, they should take responsibility for their convictions?

LORING: Exactly. Nobody took me up on it. I’m happy to say that again though.

SCHELLER: People say similar things to pro-life Christians about abortion.

LORING: This would be really simple, though, simple and cheap because you don’t have to raise them. All you have to do is keep them frozen. And then you can figure out what should happen to them after that. That’s not my problem.

SCHELLER: Do you get any flack from your Catholic relatives about your work?

LORING: No. As you know, many Catholics also think birth control is okay and a lot think IVF is fine. So it all follows from that. My relatives are pretty intelligent people, so I don’t get any trouble from them. There might be an outlier somewhere, but not a close relative.

SCHELLER: Thanks for talking to me Jeanne. I always appreciate the fact that you shed light rather than heat on this issue.

LORING: If somebody wants controversy, they’re going to have to go somewhere else.

Check out the reaction to this interview at The Huffington Post.

Running for Research Coast to Coast @CTF.org

I love being a member of the NF Endurance Team and have just had my first post published on the team blog at the Children’s Tumor Foundation website. It’s about my running journey and my latest event. Here’s how it begins:

I didn’t imagine when I ran my first half marathon with NF Endurance in October 2008 that I’d be running my third on the other side of the country in 2010, or that I’d register for my fourth while my calves were still tight. Yet, here I am whittling down my times and racking up donations for a great cause!

I’m a Jersey Shore native, but my family and I had been living in Southern California when my son Michael, a friend and I signed up for Long Beach in 2008. Four days after we registered, my other son and NF hero, Gabriel, died tragically and unexpectedly. Despite the rawness of our grief, we decided to honor his memory by keeping our commitment to the team. There was little thought to race times, but we did raise more than $2,600 and had a wonderful, poignant day.

My family and I then moved home to central New Jersey and I ran the New York City Half Marathon with a tiny NF Endurance team in the blistering August heat of 2009. That too was an emotional, glorious race that finished yards from the World Trade Center site, and I raised another $1,220.

I knew my next event would have to be on my sandy home turf at the Jersey Shore. I was nervous about the April 17, 2010 date though, because the April weather here is generally miserable and I’ve never been a bad weather runner. My nightmare scenario was running on the boardwalk for 13.1 miles with icy, rainy wind blowing off the Atlantic and into my face. Long before April rolled around, I was contending with blizzards and torrential downpours. …

You can read the rest here, and while you’re at it, consider a small donation. Any size will do.

Running in the Shadow of 9/11 @Her.meneutics

There isn’t much to say in introduction to this essay except that it’s not what I intended to write. I had thought perhaps I’d get it out of my system and then write a more forward looking piece, but the editors wanted this. Here’s a clip from the middle of the essay:

On Sunday morning, the race began with a seven mile loop of Central Park. We emerged from the park onto 7th Avenue to the sound of cheering crowds. A smile crossed my face so big it made me laugh. Owning Times Square for a moment felt as magical as I imagine it must feel to be a Broadway star. We turned right onto 42nd Street and loped over to the West Side Highway, where we were greeted by showgirls and guys dancing and singing us on to victory. It was about then that my legs began to get heavy and tight, but I ran a really smart race. I paced myself, stayed in the shade, stopped at every fluid station, stretched, and ate packets of salt as advised in the 87 degree heat. Someone later asked if I ever thought of quitting. No! I was having too much fun taking pictures and tweeting as I ran and walked!

Besides, how could I quit with Dribble the World runner Ashley Ten Kate bouncing her basketball a few strides ahead of me for 13.1 miles! According to its website, Dribble the World “exists to save the lives of orphans in sub-Saharan Africa using the game of basketball.” There was also the 13.1 Virgin runner, who I thought was running in support of abstinence until someone who doesn’t write about the sexual revolution and its consequences informed me was probably a first time half-marathoner. Duh.

Sprinting for the finish line a couple hundred yards from Ground Zero, though, I started to cry again. It was as if all the happiness and pathos of my life was represented in that course. …

You’ll have to go to Her.meneutics to read the whole thing.

Images from a Perfect Day: NYC .5 ’09

Ready to Go

Running for Virginity

Running for virginity? (Had to be told, no, running her 1st 13.1!)

Team Mates


Fluid Station; Seventh Ave.

Fluid Station, Seventh Ave.

Approaching Times Square on 7th Ave.

Approaching Times Square

Entertainment at 42nd St. & West Side Highway

Entertainment at 42nd St. & West Side Highway

Approaching Mile 10

Approaching Mile 10

Passing World Trade Center Site Near the Finish

Passing World Trade Center site near the finish

Refueling after 2:42:18

Refueling after 13.1 miles in 2:42:18

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.

Speak the word only and my soul shall be healed.


I spend a good deal of time defending evangelicals, both in the real world and in the virtual one. I’ve begun to realize, however, that I’m often defending aspects of evangelicalism that I don’t care for myself. For example, in a discussion that followed my Her.meneutics post on “Hooking Up,” I defended followers of Bill Gothard against some rabid criticism, even though I deplore the sort of legalism Gothard represents. And last year, at Brandeis University, as one of two evangelicals amidst a dozen or more religion journalists doing a fellowship on Judaism, I repeatedly defended evangelicals against negative stereotypes that I myself have pondered in print.

I bring this up because, now that I’m home, I don’t fit easily in some of my old evangelical circles. Not that I ever did, but it’s been a while since I’ve been immersed in certain of our popular religious practices. I find myself shocked at things I once gave ne’er a thought to. I had hoped, for instance, that attending a Bible study led by a dear friend and wonderful teacher would bring me comfort. Unfortunately, I don’t care for the Bible study material we are using. It wants to turn the Bible into a self-help manual and its characters into heroes, and I don’t. I’m also tired of studying the Bible to extrapolate every last ounce of possible meaning out of it. It follows then that I don’t want to rip it into shreds and remake it in my own image. I mostly just want to read it for the comfort and correction I find in it.  So, there’s that and then the study group is composed of women from both sides of two church splits I lived through. There’s nothing awkward in this, except that I get a clear picture of where I’ve been and see pretty clearly that I no longer belong there.  I love and appreciate those places, but rarely find comfort in their forms of worship, whereas I always find comfort in the Anglican liturgy. Always. Never once in my three years as an Anglican has it failed to do its work on me. I live for Sunday worship because Sunday worship imbues me with the power and peace I need to live. (Worship is about God, but it gives back.)

I mention this because it relates to the topic at hand. That topic is pain. Deep, abiding psychic, spiritual, emotional pain that sometimes lasts for days on end.

Last night I was in that kind of pain, and so I picked up Nancy Guthrie’s book, Hearing Jesus Speak into Your Sorrow. I’m skeptical, not of Nancy mind you, but of my evangelical tribe’s tendency toward weak tea. I began reading nonetheless.

In chapter 3, she deals with those who would suggest that our children ( hers, and mine by inference) who died would have been healed if only we (or they) had had more faith. Nancy chose the story of Jesus healing the leper in Mark 1: 40-42 as her text for dealing with this issue. She came across the passage in the months after her daughter Hope died and says it hurt her feelings to think that Jesus was not willing to heal her child. I know exactly what she means. On the morning Gabe died, I said something to God that I don’t recall ever saying to Him before. I lay in my bed, and said, “God, if I were honest, I’d tell you I don’t think you love me anymore. How could you let my children …” A little while later, I said something harsh to Gabe about him wearing a dirty, smelly shirt to work again, and then went for a long prayer walk so that I could get my thoughts back in line with the truth of God’s word and affirm my trust in His love for me and my children. Before the day was done, my son was dead.

Nancy’s implicit trust in God led her to dig deeper into the Scripture to find out what Jesus was really communicating through his miracles (particularly the healing miracles). She came to the conclusion that if Jesus’s healing ministry had been mostly about healing physical sickness, it would have been more pervasive and central to his focus. Also, physical healing is by nature temporary and God didn’t come to earth for a temporary fix. In John 20: 30-31, we learn that the purpose of Jesus’s miracles is that we might believe, and believing, “have life by the power of his name.” Jesus’s priority was our deliverance from the ultimate source of our suffering and that is the sin that separates us from God. About the fall, Nancy writes:

Into the purity of the world God created, sin brought a poison that penetrated everything. And into the relationship we enjoyed with God, sin built a barrier. We went from being at peace with God to feeling threatened by him. Guilt and fear took over where innocence and openness had once ruled.

Ever been there? I have, at least once in the past 24 hours. And yet, she reminds us,

There is a day coming when death and disease will be healed for good. That is our sure hope in the midst of sorrow.

The passage that penetrated my pain last night is this one:

When Jesus said, “I am willing. Be healed!” to the leper, he was saying that he wants to cleanse us from the pervasive sin that will prove eternally fatal without his healing touch.

And now I realize that Jesus turns toward me when I call out to him for healing. Now I can hear him lovingly responding to me, saying, “I am willing. Be healed.” He is at work in my life, bringing healing to the wounded places where sin has left its ugly mark. He certainly isn’t finished yet, but I know the day is coming when his work in me will be complete.

I’ve also come to peace realizing that Jesus did not withhold his healing touch from Hope or Gabe. He has taken them to himself and will, at the resurrection, give them glorious bodies (Philippians 3:21). And this is no get-God-off-the-hook cop-out. It is everything we would ask for and long for.

It is the last paragraph that stuck with me as I went into today. I don’t want get-God-off-the-hook cop-outs. I want the truth. And the truth is that Gabe’s brain was sick from neurofibromatosis, from years of asthma-related oxygen deprivation, from inordinate guilt emanating from suicidal depression, from … The truth is his resurrected body will be tumor-free. The truth is the impulsivity and feelings of aggression that are common to both NF patients and suicide victims will be gone forever. The truth is he will breathe easy and never again have to say no to an invitation because of a household pet. The truth is he now knows and will for all eternity know that he is loved and lovable and lovely. The truth is it’s not my fault.

I didn’t process all of that last night. I simply held the last paragraph in my mind and went to sleep. This morning, I was still in pain.  At church, neither the opening hymns nor the visiting priest bade well for healing, and yet heal the liturgy did. I took note when the priest used alternate phrasing in the prayer we say before taking communion. Phrasing that echoes what Nancy wrote about from Mark 1. It is a sentence that I silently add every week and keep wishing our rector would use instead of the other. It is a piece of the reason why the liturgy never fails to do its work on me. There is power in the prayer:

Lord, I am not worthy to receive you, but speak the word only and my soul shall be healed.

He is willing, and so I am healed when I take his body and blood into my own in faith. There is power in the blood. One mustn’t forget that. Afterwards, we echoed these sentiments again as we sang the African-American Spiritual, There is a Balm in Gilead. It goes:

There is a balm in Gilead, to make the wounded whole. There is a balm in Gilead to heal the sin-sick soul.

Sometimes I feel discouraged, and think my work’s in vain, but then the Holy Spirit revives my soul again.

There is a balm in Gilead, to make the wounded whole. There is a balm in Gilead to heal the sin-sick soul.

If you cannot preach like Peter, if you cannot pray like Paul, you can tell the love of Jesus and say, “He died for all.”

There is a balm in Gilead, to make the wounded whole. There is a balm in Gilead to heal the sin-sick soul. …

Sometimes I feel discouraged and think my work has been in vain, but then the Holy Spirit revives my soul again. I cannot preach like Peter; I grapple with too many negative triggers and questions. I cannot pray like Paul; I don’t know how anymore, except in the most general terms. I can tell the love of Jesus though, and say, “He died for all.” For all the broken, battered and bruised. For all the sin-sick lonely souls. For all the high and mighty liars. For all the orphaned, starving children. For me. For you. For Nancy. For her Gabe. For mine. For evangelicals and our critics.  For every tribe—past, present and future. There is a balm in Gilead to make the wounded whole. There is a balm in Gilead to heal the sin-sick soul.

Notice, if you will, that the day’s healing was found in drinking from deep evangelical wells.

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.