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Archive for 2013

Change the World

Last Thursday I spent the day with 10,000 women. (A dream for the few vendors lucky enough to have a table, and yes, very long bathroom lines.) I’ve always wanted to go to this conference – The Massachusetts Conference for Women. I knew it would be a day of learning, female camaraderie and, most of all, inspiration. It was all that and more. Cory asked me that night what my favorite part was and I was stumped. “Ooooh, that’s hard,” I said, “all of it!” And when Tara and I were comparing notes after – since we decided to divide and conquer some of the sessions – I looked at her, shook my head and said, “Well, now we just need to figure out how we’re going to change the world for the better.” That’s how you feel when you leave an incredible conference like that.

Those of you who follow me on Twitter or are friends with me on Facebook know I was posting quotes throughout the day. (If you missed it and need some inspiring words of wisdom, go back to December 5 on my Twitter feed.) What has stuck with me more than any other was not any of the people or sessions that I went there to see, but a surprise last minute addition: Nobel Peace Prize winner Leymah Gbowee. She is a Liberian peace activist, trained social worker and women’s rights advocate. She told us in a very straight, matter-of-fact manner, as if we were a bunch of girls gathered for afternoon tea and catching up, how she helped to bring together Christian and Muslim women to help end Liberia’s Civil War in 2003 – when she was just 31. Over and over in my head I keep hearing her saying the words, “exploit your collective power.” Basically, she was saying – much more eloquently – hey, you! If you believe in something, find a bunch of other people who believe in the same thing, join together and you can make anything happen! And I know she’s right.

One of the main reasons I accepted my job at Genzyme was because I was told repeatedly by all the people who interviewed me that I could make a difference in the lives of people with rare diseases. And that has proven true, especially as I got more and more involved in the Genzyme Running Team (GRT) and helping to engage employees, create patient partnerships and raise funds for NORD (the National Organization for Rare Disorders). The Running for Rare Diseases Genzyme Boston Marathon Team – a small subset of the GRT – is such a prime example of what Leymah is talking about: the relationships they are building, the increased awareness of rare diseases like Niemann-Pick Type A, Homocystinuria, and Pompe, and the funds they are raising – none of this could be accomplished by one person alone. It is because we are all joined together for the common purpose that we can make a difference.

Today I am going to be joined with another group, to try to exploit our collective power in another way: to prevent a killer from leaving prison. On May 31, 1993, Scott was murdered when he tried to stop two men from robbing the Walpole McDonalds, where he was working. Today, because of a deal he cut, the one who actually pulled the trigger is eligible for parole. I will be in court with my best friend Tina – Scott’s Irish twin – and her family to do everything we can to prevent him from returning to the streets and taking more lives. Tina has gathered many written testimonies and signed letters protesting his release, and several of us will be there to read as many as we’re allowed, to make it clear that it was not just any life taken that day: it was Scott Christopher Down, loving brother, son, friend. A hysterical, determined, unique blonde boy with the most incredible sparkle in his eye. He was always determined to help change the world for the better. Don’t worry, Scott, you live on in Tina, Jason, their incredible children, your parents, friends and all of us. We will not let you down. xoxoxo

Scott Christopher Down

Scott Christopher Down

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I wasn’t going to post about #GivingTuesday. To be honest, I was a little annoyed with all the e-mails that flooded my e-mailbox and solicitations that filled my actual mailbox the last couple days, all begging for my donation. It’s not because I’m a scrooge (although that could be debated) or anti-giving (you KNOW that’s not true), rather because I think giving should be done all year long, not just one day in December. But that’s not what I’m writing to say.

Today one of my friends from high school repeated what I went through just over a year and a half ago: she went to Brigham and Women’s for a double mastectomy because just a few weeks ago, the day before her 40th birthday, she was diagnosed with breast cancer. Not what you plan for 40. Since that day, I have been trying to help her the best I can, answer all her questions, explain to her the reality of what to expect, fill in the details that no nurse or doctor can tell her.

And my heart breaks for her, and her family. I know she is strong, and not only is she going to beat this, but kick its ass, just like another friend from high school is doing right now, busting her way through radiation. (Yay Bonnie!!!!) It’s because her life is now changed forever, and change is never easy. And because this is a never-ending journey that’s going to have a lot more downs than ups for a little while. And that little while will seem like forever…

But she is very similar to me in many ways. She is an incredibly strong and determined woman. She told me from that first day that she was going to kick this and was already ready to have the double mastectomy. She is naturally positive – which is so great not only for her, but her kids and husband. The more she can remain positive, so will they. And, I think tied with the optimism for most important,  she has an incredibly large and loving support system. They will get her through this. I know I never could have gotten through this without all of you…

And I also don’t believe things would’ve been nearly as easy for me if I’d been anywhere else but Dana-Farber and the Brigham. I’m confident we’ve both been in the best hands there. So that is what is compelling me to write on this Giving Tuesday. Maybe you don’t spread your giving throughout the year. Maybe today is your day. If it is, please consider giving to Dana-Farber and The Jimmy Fund – you can even support them by holiday shopping in their giving catalogue. Or, another great related organization that could really use your support is Bright Pink, which is focused on educating and empowering young women about breast and ovarian cancer.

Honestly, there is no shortage of needy and deserving organizations to give to today, or any day. Put your money where your heart is. Think about what really matters. Happy #GivingTuesday.

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“Why, why, whhhhhyyyyy???” I woke up whining. And I hate whining. But it’s also very cold and I hate the cold. And while I love that running lets me eat and helps me not get huge, I don’t love running. (Sorry Phil.) And have I mentioned that I am not a morning person? I thought so. Yet here it is, Thanksgiving morning, when really I don’t need to be anywhere before noon, and what am I doing? Getting up. Early. To run. In the cold. Why? Because this year I can.

I never think of the weather when I sign up for these 5ks. I think of the cause (in this case Multiple Sclerosis – it’s the Boston Volvo Village 5k Road Race for MS) or the other people running (some of my Genzyme Running Team peeps) or the great people watching (people dressed up like turkeys, pilgrims, Indians and I’m sure there will be at least a few Santas).

I did, however, start to think about the weather yesterday, when I heard how incredibly cold today was predicted to be. Andrew asked where and when to meet, and I told him I’d be there if it was above 30 and not raining or wicked windy – I can’t afford to get sick with surgery less than two weeks away. Then, last night when I was snuggled warm in bed, and was thinking how crazy it is to be out in the cold period, I texted Tara.

Me: Remind me there’s no excuse not to run in the morning. I won’t get sick and it doesn’t matter that I haven’t run in two weeks or how slow I am.

Tara: Slow and steady! Something is not just better than nothing, it’s an investment in you. I’m running/walking a turkey trot in the morning. You’ll feel better for doing it.

And I know, as usual, she’s right.

So I woke up and rolled over to check the weather, figuring above 30 and I’m good, since the beams of light shining into my room already told me it’s not raining. And what does the weather say? 30 – and then “feels like 19” – ugh! I could’ve texted Andrew, told him I didn’t want to risk getting sick (which is seriously the big fear in the back of my mind, but also an excuse), but I didn’t. Because then I started thinking about last Thanksgiving.

Last Thanksgiving I couldn’t run, regardless of the weather. Thanksgiving week 2012 I finished my 24th week of chemo. It was the last, but my body ached more than ever, I had tons of numbness and tingling in my fingers and feet, and the lymphedema had just started. And I had radiation still ahead of me. Oh, and I was bald. No eyebrows, no eyelashes and no hair on my head. Running was the last thing on my mind – I was just thankful I could get up in the morning!

So today I am running. Because I can. Because God is good and has given me a great life, and a second chance, and I don’t want to waste it. 2013 may not have been the easiest or best year, but it’s been a hell of a lot better than 2012. I am so thankful for all my family, friends, and work buddies who have stuck by me, encouraged me and even pushed me when needed. And I am thankful for the new people in my life, including someone who makes me smile every day, even when he’s not in the same state! I have incredible hope and confidence that as great as things are now, they are going to keep getting better. And for all that I am beyond thankful.

Andrew just texted.

Andrew: Running?

Me: Yup. Will be there shortly.

So I better stop typing and go freeze, I mean run. 😉 Happy Thanksgiving all! Xo

Post run update: Yup. I ran. And froze. But it was worth it!

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