You don’t have to live a long time to leave a legacy. A dear friend sent me this story which appeared in the Detroit News (4/23/07) about Miles Levin, an 18-year-old young man who is living with a rare pediatric cancer called rhabdomyosarcoma. Miles was 16 when he was diagnosed with this highly malignant cancer of the soft tissues which has a 20% survival rate. Over the last two years, as his cancer advanced, Miles decided to document his life’s journey. After reading the article, I immediately signed on to his website www.carepages.com, typed in patient’s name as levinmiles, and was deeply moved by his candor and wisdom. Here are some sample entries:
“For awhile now, with every significant event or experience that’s come along on the journey I call my life I have had to consider, am I going to share this….? This is not my diary but I believe candor is courage. In light of this, I’ve decided to share something with you which I normally keep to myself. I was asked what college I was going to by a friend tonight. Now I can say I know what it feels like to be harpooned in the chest. He is one of the most well-meaning people I know, so I wasn’t quite sure what his words meant; anyway, I had to tell them I’m not going to college in the Fall. Though I didn’t want to say it outright because it would almost feel explicit, it doesn’t look like I’m going to college in the Spring neither, or in any subsequent Fall.”
“It is not dying that scares me; it’s dying and having no impact. I know a lot of eyes are watching me suffer, and win or lose, this is my time for impact.”
“I feel relatively ready. I’m proud of myself, proud of my life, and most proud of the story of my life I say the story because it includes everybody in it, and all the goodness and courage displayed by my family, the generosity of people… I’m proud of the people my friends have become. They’ve grown so tall; I am proud of myself, what I’ve done I believe is what I’ve been sent here to do. Something has shifted. Everything is okay now. It’s okay because I am OK with it. Thank goodness that my having and dying from cancer impacts the lives of so many thousands of people that it overshadows any personal bad. I’m in escalating pain, but I hardly mind. You know why? Because this is my story and it’s not meant to be told any other way.”
Last week the Sarcoma Foundation of America named Miles Levin the recipient of their Leadership in Courage Award; given annually to a sarcoma patient who, through his or her actions, writings, or personal efforts, inspires others. Miles said, “I probably won’t be able to accept the award in person we plan to videotape my acceptance speech and then show that at the gala. My family will be present.”
Last week Miles wrote from Sloan Kettering Hospital in New York that his cancer had spread to all his bones and marrow and that investigational treatment was the only option left. “My mom told me today that I don’t need to go ahead with any more treatment if I didn’t want to. Mainly because life is the most breathtakingly amazing thing I could ever imagine, I’ll go for it even just a couple more days or weeks or months…. I will fight to the bitter end, even though it is all but a certainty, that I will never be cured…..
I still have much to learn in the realm of making the best of it, but I like to think I know a thing or two by now. It is within your power; I know that much and it’s hard; I know that too. But it’s all in how you look at it. So have a little fun.”
This new investigational therapy has no track record, but Miles wants to be a trailblazer. His doctors want to give it to him but his platelet count is too low. Miles’ mother has asked his thousands of readers and well-wishers to send their prayers and visualizations to raise his platelet levels. I wrote to him, you might want to as well, because nurturing relationships and staying lovingly connected is how we thrive as long as we live.
I say this for All My Relations, Mi Takuye Oyacin.