Miles Levin Chronicles His Journey Toward Death On An Online Blog

Miles Levin Chronicles His Journey Toward Death On An Online Blog

Courageous Cancer Blogger Miles Levin Dies at 18

Miles Levin was determined to have his say in life, even with cancer ravaging his young body. When he died on Sunday, six days before his 19th birthday, he had blogged a lifetime of thoughts and dreams, words that somehow pierced through cyberspace and moved tens of thousands of readers to respond. Miles blogged on the Web site of Beaumont Hospital in Royal Oak, Michigan.

He isn’t the only person to have written about a dying man’s journey, but his wit and wisdom and choice of words, captured the imagination of his readers. His story was circulated well beyond the world of cancer patients and was told by mass media including the Detroit News and CNN. His wisdom was sought by parents of dying children, those recovering from the brink of death, even ordinary people captivated by his enjoyment of life in the face of death.

In announcing his death Sunday afternoon, his family wrote: “Miles went from a boy-man to a man-boy. At a cost that would knock your socks off, Miles still managed to pack a wallop. He could not and would not be held back … from living life to the fullest.”

He launched his blog in 2005 simply welcoming new readers and telling them he’d been stricken by a pediatric cancer called alveolar rhabdomyosarcoma, a cancer that strangles the muscle tissues.

He declared that his motto would be simply: “It’s always something.” And it was. He got sick and then better and then sick again and still managed to navigate the milestones of adolescence: keeping up in school, a first serious girlfriend, college applications, prom.

He became a little famous and laughed at himself. He wrote about the value of life and somehow acquired an almost supernatural ability to appreciate small pleasures such as a sunny day and the presence of a loving family. This notion that cancer and the fear of death could expand your heart and mind was adopted by readers as far away as Asia and South America. He declared that perhaps he’d been put on Earth to show people how to die of rhabdomyosarcoma with grace.

As his illness worsened, Mr. Levin’s blog became a reason for him to live, and the readership on its Beaumont-affiliated Web site carepages.com continued to grow. It captured national attention when he appeared on Anderson Cooper’s CNN Newsmagazine 360 twice in June.

Cancer patients and survivors continued to flock to Mr. Levin’s blog following his commencement speech at Cranbrook Kingswood Upper School that month. He appeared alongside one of the school’s best-known graduates, ABC news anchor Bob Woodruff. He and Woodruff had become friends several months before. Over the last school year, Mr. Levin’s classmates often wore T-shirts emblazoned with his upbeat mottos. Charlie Shaw, head of Cranbrook’s high school, remembers one well: “Keep fighting, stop struggling.”

Miles’ central message was teaching kids how to fight,” said Shaw.

By Sunday evening, hundreds of condolences already had been posted to Mr. Levin’s blog, which his mother has been keeping up in the past couple of weeks after he grew too sick.

When he was too sick to write, his mother, Nancy, chimed in: “The boy Miles was in June of ’05 was sweet, innocent, disorganized and ungrounded (“earth to Miles”). The man that Miles is today is clear, focused, heart centered, and purposeful. “It was cancer that intervened. That deadly disease carried the power of transmutation, and Miles accepted the offer.” She quit her full-time job as a psychotherapist to tend to him.

The Sarcoma Foundation, which advocates for better treatment of soft-tissue cancers such as his, awarded him its 2008 Leadership in Courage Award a year early. Predicting he wouldn’t be around to receive it, they taped his acceptance speech.

A few months ago, knowing that his high school graduation was probably his last milestone, he wrote: “I can rest assured that even if I succumb to the rogue cells, I will leave behind a legacy of victory. “Dying is not what scares me; it’s dying having had no impact. I know a lot of eyes are watching me suffer; and — win or lose — this is my time for impact.”

He did have an impact. Fifteen-thousand bloggers were responding monthly this summer. In the end, they mostly sent him God’s blessing. And they spoke of positive things like seeing the brightly shining stars on summer nights, the beauty of the will to survive, simple things that make you laugh, and the need to use words to soften the hardest of times.

The funeral will be private. A public memorial service at Miles’ high school, the Cranbrook School in Bloomfield Hills, Michigan, is planned for November.

Miles Levin Accepts the Sarcoma Foundation Leadership in Courage Award

Miles’ bloggings were posted on his hospital Web site at http://www.carepages.com/ (register, then type LevinStory). Here’s one of his postings, dated June 2, 2007:

“I’d like to share with you a life discovery I’ve had. I’ve always wondered to what extent attitude can be chosen, or how much of it is beyond conscious control, making it more a function of neurotransmitters, genetic predispositions, and the quality of our surrounding circumstances. It’s really a question of nature versus nurture. To those who say we are the captains of our mentality, I say look at people who are depressed. Do you think they choose to be depressed? Depression sucks. They would do a lot not be depressed; almost certainly more than the people who claim that attitude can be self-determined are actively doing to be happy. Most happy people, as far as I can tell, don’t work very hard at being happy. It just sort of works out that way by virtue of their constitution. For the most part, I include myself in that category.

Anyway, there was a recent period a couple weeks ago where I was really struggling with the fact that all my friends and my girlfriend get to go off to college in the fall with the future in their laps while I get left behind to stay at home doing chemotherapy treatment, if I’m even alive to do that. All those friends who were once my community, who kept me plugged into some sort of normal life, will be far away and very busy. I will fade and I will be bored. That was and still is hard. I know I should feel grateful just to still be alive in the fall, but somehow that didn’t help. Is it so much to ask that I too could have college to look forward to instead of either more treatment or death?

This got to me in a way that many things in me life should probably be getting to me but I’ve refused let them, and that’s been the magic of this story. I don’t think I did very many updates during this time because I didn’t feel I had anything to write that was worthy to read anymore, or of 12,000 people’s time. Whatever I had—wisdom or poise or centeredness or whatever–I felt I’d lost. Whereas previously, Miles had been on top of his cancer, now my cancer was on top of me.

This went on for about two weeks before one day I finally decided that it was enough; I needed some time to deal with that disappointment, but it’s enough now and further moping would be a waste of very precious time. I decided that today was the beginning of a change in my attitude, a change in me. I said it aloud. And what I want to tell you in this update is that it worked. I’m back, I suppose. I’m feel back on top of the cancer, and will be to the end. I’ve reverted in many ways to what I used to be—the accepting optimist–but incorporated into that is something new. Precisely what is new has not entirely crystallized yet, but I think the change can be likened to that of someone who has survived a year with one of those abhorrently difficult and unforgiving math teachers. It teaches you to suck it up and get the job done, even in the face of incredible injustice.

I conclude from this successful transformation in outlook that, to a large extent, a person can make the conscious decision to change their attitude–much more so than I previously thought. It’s not effortless; it definitely takes a certain enduring conviction. And in all fairness, by genetic predisposition, some will find simply deciding to be happy easier and some will find it harder, depending on their neurochemical makeup.

But I want to tell you that it’s possible.”

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5 Responses to “Miles Levin Chronicles His Journey Toward Death On An Online Blog”

  1. Leta Says:

    What a wonderfully inspiring and magnificant young man. I’m sure God was proud of His creation that was to be Miles Levin. May God bless you with peace as you grieve the tremendous loss of your wonderful son.

  2. Loren Says:

    Thank you for the wonderful message for me to live by.

  3. brightfeather Says:

    This story touched me deeply.
    I’ve been there. I survived cancer.
    His spirit lives on.

  4. alexandra Says:

    it’s so hard to make that choice
    and even then sometimes no mater what
    you fail

  5. disembedded Says:

    Dear Alexandra,

    If you mean his comments, “a person can make the conscious decision to change their attitude–much more so than I previously thought. It’s not effortless; it definitely takes a certain enduring conviction. And in all fairness, by genetic predisposition, some will find simply deciding to be happy easier and some will find it harder, depending on their neurochemical makeup.” I agree that it’s a hard choice, and even harder for some, but one that’s well worth it.

    With my very best wishes to you.


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