To our Patient Partners…

I have a confession to make. It has been ten days since the 2014 Boston Marathon, and I have not run a single step since. I haven’t laced up my sneakers, I haven’t broken a sweat, I haven’t played even one track on my running playlist. And that’s just fine. Because for 18 weeks I ate, drank, and breathed the Boston Marathon. Everything I did was in preparation for that day, every weekend revolved around the long run, and every free moment involved a fundraiser. And then it arrived, and I gave it my all. And in exactly four hours, nineteen minutes, and twenty-seven seconds, it was over.

Don’t get me wrong – I loved every second of it. In fact, this year was especially wonderful. The team was a well-oiled machine, we were united, I personally felt strong, and our patient partners were just beautiful. But it was also often heartbreaking. We were, after all, returning to the scene where lives were lost. And this year the story I told, and the spirit I carried with me on Marathon Monday was one of a family that, too, had experienced loss in the last year. Yet here they were in Boston with me, over their holiday weekend, cheering me on every step of the way, with posters and hugs and all the love in the world. They made me feel like what I was doing was so important. In fact, the word ‘hero’ may or may not have been thrown around. And after all the planning, and the travel, and accommodations they made, it was over in the blink of an eye. In four hours, nineteen minutes, and twenty-seven seconds, to be exact. And this is true for not just me and my patient family; it is true for ALL the runners and patient families. For months leading up to the race we share emails, phone calls, stories and pictures. And if we’re lucky, for 72 hours before it, we share hugs, laughs and maybe a few tears. Then the runners go out to Hopkinton and battle through 26.2 miles, knowing of the love that awaits us along the way. And at the Super Quinnend we are rewarded with a medal and a tin-foil cape. How symbolic.

But here’s what I want our patient partners to know – we are not the heroes. Far from it. Because while I got to take my shoes off after the race was over, I also got to make the choice not to put them back on for ten whole days. That’s a luxury that we, as the runners, get to have. As the sun sets on Boylston Street, we all go back to business as usual, and to the lives we knew before this all started. But for you, the journey continues. Day in and day out, you carry it with you, you fight your battle, and you never stop running. So no, we are not the heroes. You are. We are not even in the same realm as you. And we know this.

You share your stories, your pictures, your memories and your families with us. And I want you to know that that means everything to us. For the members of this team, you are not just a symbolic relationship that we use to raise money for NORD. And we don’t just raise money for NORD to get a place at the starting line in Hopkinton. In fact, I know I am not alone when I say that I don’t raise money and awareness for NORD so that I can run the Boston Marathon… Rather, I run the Boston Marathon so that I can raise money and awareness for NORD. So please understand that you are not just a story we tell. No, you are so much more than that. You are our friends, you are our family, and you are our heroes.

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6 comments on “To our Patient Partners…
  1. Erica Thiel says:

    Thank you for beautiful words Kai,
    We are all in it together, runners and Patient partners!


  2. Emma Rooney says:

    I have to admit that this post makes me a little sad. I hope it’s not really over but you certainly all deserve a proper rest (and something other than running for a bit).

  3. Jessi says:

    Kai, thank you for so beautifully articulating how we feel about our patient partners and our RFRD community, and the reasons we run the marathon. Your words resonate so deeply in me that I’m (once again) feeling choked up. Although I am your friend in communications, I have to say that no one speaks and writes and expresses the spirit of this team like you do. I will never forget how you told the story of your patient family when we had our post-long run team brunch at the Priors’ house. Not just because of what you said but how you said it, we were all teary-eyed and reminded at that deep, soul level about why we do this.

  4. Well, at least this time I’m crying by myself in my living room instead of in front of 200 people! This was so beautiful <3 Let's leave it as a Mutual Admiration Society 😉 xoxoxoxo

  5. Sharon cotnam says:

    Kai thank you for expressing this truth!

    Although the marathon prep ended /::: We know the lives of our patients struggles never ends . Not a minute went by during the 26.2 mile run that I lost sight of my personal heros and respecting the on going struggles of my forever patient families: Helen and John, My sister Michele, Shauna, and the families that support all of our patients.
    I was overwhelmed the entire race by the Real reason we run Boston!

  6. Mary O'Gara O'Leary says:

    Thank you Kai and to all the runners who ran for special angels. I can not put into words how you made myself and my entire family feel knowing the hundreds of hours you trained to run for Quinn. I’ll never understand why she was chosen to carry out this mission, but it is evident through you, at what amazing act of kindness people have done in her name. THANK YOU!

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Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.