Kristen S Kuhns [ksk]

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Kristen's Story > Chapters > Miles Levin

"Miles is Saying Goodbye, My heart is breaking" 


Date Range: 08/08/2007 To 08/08/2007   Comments: 5   Views: 35,094
Attachments: Yes [14 Images]

Miles Levin is, as his mother so eloquently put it, not like a "normal human." It's true that most "normal humans" at the age of 18 don't face debilitation from alveolar rhabdomyosarcoma, a rare cancer that causes cells to destroy bones, muscles, connective tissues and tendons. It's just as true that Miles should be driving too fast, eating too many cheeseburgers, moving too quickly, without regard to his own mortality as teens are prone to.

I first "met" Miles on Anderson Cooper's show 360degrees entitled "Whatever life we get is bonus." I say met because once you experience Miles, you don't forget him. I have read, and re-read, the following passage at least a 1000 times since Miles Levin crashed through my television monitor and told me to wake the hell up, learn how to live, and be grateful for it:

>>Unlike many cancer patients, I don't have much anger. The way I see it, we're not entitled to one breath of air. We did nothing to earn it, so whatever we get is bonus. I might be more than a little disappointed with the hand I've been dealt, but this is what it is. Thinking about what it could be is pointless. It ought to be different, that's for sure, but it ain't. A moment spent moping is a moment wasted.<<

I wasn't really expecting this Miles guy to be so persistent. I wasn't expecting the tears I had watching this person I'd never met before to return. I wasn't prepared to return to his blog day after day, obsessively checking on his progress and hoping for a miracle. Before I met Miles, I was busy. I was launching a new company. I had BIG! BOLD! Things to do! People to see! Places to go!

Then along came this kid; a kid really. Kid who's wiser and smarter than most adults I know. Certainly wiser and smarter than I. One reporter called him the Dalai Lama because of his bald head and sh*t-eating grin. But it's hardly just his looks but his presence and sense of self and our places in this world.

And Miles, he was busy living his life. He had friends, high school, a beautiful girlfriend, Kalamazoo college was calling, and his family was rock solid. So why Miles? What part of the universe or plans or whatever it is up there makes this genetic mutation of evil we call cancer strike us down, and worse, strike us down before we have a chance to make all those mistakes that we all make?

In 2005 he was diagnosed. He began a 19 month chemo regiment that at the end looked promising, but the cancer returned. The prognosis from the treatment centers were all terminal.

His mother questions how a "kid like him" can die so soon. I think we all do. Reading through Miles's blog and updates on his care pages, I am struck by how many people, through the power of the internet, he has reached out and touched. People from all over the world. Other kids who are facing similar struggles. Parents who lost their children. So many... and I think he mails back a lot of them in dialog like he did me.

Some comments left on Mile's site (most in the past few days, thousands of them) show you how deeply he etched into many of us:

  • "You are a hero,someone chosen to experince this tragic ilness to show millions Of people about grace and dignity and you are doing a wonderful job."
  • "I read a book the other day that made me think of you; it discussed how so many people appreciate a beautiful sunrise, or a beautiful sunset, but how many of us appreciate the rest of the day, without any spectacular colors to show it off? I immediately thought, Miles Levin does, and you have taught so many of us to appreciate the beauty of every day. Thank you Miles for teaching me this."
  • "Your life is an inspiration."
  • "You have accomplished something all of us strive to do. You will be remembered by millions for your character, wisdom, courage, and most of all your amazing spirit and determination. You are a good man."
  • "I do not know you, however my heart aches for you and your family. Your life is leaving an impact on me, where I am a total stranger, so I know the impact that you are leaving for people who know you must be incredible. Your courage is tremedous and I can only hope and pray that you are at peace."

How many of us mere mortals will have such legacies spouted about our lives, of which many of us will live 40, 60, 100 years?

Miles graduated in June and gave a rousing, touching commencement speech. I know that class will take the legend of Miles Levin with them. I hope they become a great class that does great things for they will carry a piece of Miles inside them. Everyone who pours out their hearts to him wants him to live. And Miles is wisely telling us, us smart grownups, that we're so dumb. We have life in front of us and yet we complain way too much. That he'd gladly trade places with us in our go nowhere jobs, boring sex lives, crappy relationships or whatever our complaint du jour is.

Miles is saying goodbye. I don't want him to say goodbye but it's hardly my choice, nor probably his, now is it. Miles posted that he's going home to his family.

>>...I'm not resuming the sunitinib. It is pretty certain that all continuing treatment would accomplish at this point is compromising the quality of my remaining time. We've set up hospice care to manage my decline from home in Detroit, which is where I am now and where I want to be. I'm not really having any visitors; this is a time for family. I'll try to update as I can, but I am getting worse pretty quickly.
I wish I could offer better news. I really do. All I can think to say is thank you. Thank you for your ongoing support of me and my family through this most difficult time.<<

Miles, your words mean a lot to all of us. When I do stupid things or get mad at people for stupid reasons, I often have pulled up your words in my head and used them to calm me down and think – does this really matter? Those few minutes I spent angry or upset or whatever are minutes wasted [too] and such a waste that is.

I wish for a lot of things on a daily basis. I wish I was smarter, taller, thinner, richer, better at everything. Read Miles's wish and know that ours are quite trivial:

>>I don't believe you can ask for any more, but if I could ask for something, it would be to be able to go outside into the glorious spring air, feeling healthy and blissfully clueless as to how lucky I was for it, if only just for an hour.<<

I for one am pasting his words on my monitor, on my car visor, on my mirror. Miles's life means that to me.


Read Miles care pages here: (you must register first then search for Miles Levin):

Read the Cooper article here:

Read the CNN article about Miles by Rose Arce here:

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Member Since
Aug 2007
Archibald Sharron said:
posted on Aug 17, 2007
Miles loss is our loss

Losing a young man like Miles makes the world a little bit lesser of a place. I know grown adults who didn't do half what he did in 19 years. I hope his family will place more about him here for us to learn about Miles. Archie Sharron

Member Since
Aug 2007
Anastasia Kypros said:
posted on Aug 17, 2007
Oh Miles

Wow, Miles sounds like an amazing young man. I can't imagine what his parents and family must be going through right now. Cancer is not a friend of anyone. Our thoughts are with you Miles. Anastasia K

Member Since
Sep 2007
Elizabeth Butler said:
posted on Sep 13, 2007
What a great post

What a beautifully written story to remind us the fragility of life. 

Member Since
Dec 2007
Jodie Andrefski said:
posted on Dec 13, 2007
What really matters

Thank you for such a wonder post reminding us all of what is truly important. Some of us have had this reminder hit our life personally (as I did)....but still can always use the gentle nudge of remembrance to keep us focused on our many blessings.

Member Since
Jun 2011
Jon Levin said:
posted on Jun 03, 2011
Four years later

And his echo is still reverberating.

Jon Levin .... his father