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.

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

  1. Thank you Mrs. Scheller, for both your educating and encouraging words. These past few days, my heart has been heavy – filled with thoughts on Gabe. I was glad to read this post. You, and your family, have been and continue to be an inspiration to me on how to facilitate healing in the midst of a family tragedy.

  2. Lola,

    So good to hear from you! And thank you for the kind words. What choice do we have, but to try and heal? Honestly though, Jeff and I frequently say to each other that this can’t be real. It seems so impossible. Last night we were watching the new Star Trek movie and Mr. Spok’s planet gets sucked into a black hole as he stands there watching. It was a perfect picture of what happened. Now we live with that giant void and do the best we can to be embrace what is left and be better people. I know you are doing the same & will have a full and wonderful life.

    Hope all is well with your family. Keep shining like the bright star that you are!

    Much love~c

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  4. Here from the High Calling – and thank you for this beautifully written, hard look at the complicated, painful experience of suicide. I followed your links to read about your beautiful boy and thank you for those as well. I am convinced that suicide is the result of a physical/chemical misfire that tells the suffering person this is the only solution to problems/pain that seem to them to be totally insurmountable. The wreckage left in the lives of those who loved this suffering person is immense and intense.

    Thank you for beating the bushes of research and bringing some of this important information into this setting. I will hope and pray with you that more and more validation for these crucial mind/body links will be found and that the stigma surrounding suicide will be completely lifted. Depression – whatever it’s underlying cause – is a disease, pure and not-so-simple. Suicide is the result of a deadly disease process. Thank you for helping us all to better understand this truth – not only intellectually through your reading and synthesizing of the research, but emotionally and spiritually through your own lived experience. I humbly offer my prayers that any lingering feelings of guilt and regret you may still carry will dissolve completely, that beautiful and life-affirming memories will overpower all else, and that the void his death has created in your spirit will not so much disappear (in truth, I believe that to be impossible in this life), but continue to be the source of life and hope for others – and for you as well. Peace to his memory, peace be to you.

  5. Diana, Thank you so much for your beautiful comment, and your touching prayer. Yes, I need those still for all the things you mentioned. Best blessings to you.~