This is not about running. I don’t know how many times we’ve said that, and I feel like I am a prime example, because there’s no way I would do this if it was about running. I do it because of the people, my patient partner, my team mates, my friends in the rare disease community, all of the people out there who are struggling to get a diagnosis.

So while it is not about running, the fact is I still have to run. And right now, I am scared to death. I usually put on a pretty brave front most of the time (I can see many of you nodding, and saying ‘no duh,’ with a smirk on your face). I’m not sure if I’m going to be able to do that tomorrow and on Marathon Monday. I already broke down twice in the last 24 hours – which I will explain below – so I can only imagine how I will be on the course.

Last night I was on my living room floor, foam rolling (thank you Phil and Active Recovery docs, esp Abbie), grunting in pain, when I glanced up and saw my son Nick smiling down at me. “Your mother is NOT an athlete,” I exclaimed. He raised his eyebrows and said, “You’re running 26 miles – you actually ARE an athlete – get used to it!” I groaned some more and switched to the other side. But he started me thinking…

And I guess it sunk in this morning. I was with Tina, browsing some shirts in City Sports when I saw one that said “26.2” and had the Hereford and Boylston Street signs on the back. My stomach fluttered. “I’m nervous,” I confessed. It was the first time I said it out loud. Sure, I’ve run 18 miles. But it wasn’t on the course. And no one else was paying any attention to me or cared about what I was doing. I know I will be the slowest one on the team. And I know my time doesn’t matter. But it still makes me nervous.

I got in my car to head home and started crying. I’m starting the charity run – the last long run before the marathon – a lot earlier than everyone else tomorrow morning, so that I can finish near the same time as the rest of the team and we can go to brunch. What if I don’t bring enough water or fuel, since I will be running before the first few water stops open? What if I’m too cold? What if I’m too hot? What if I have a stomach ache? What if I have to go to the bathroom and can’t find anywhere along the route? What if my heel or knee starts really hurting again? What if I forget my chapstick? What if (my biggest fear) I get lost??? Yes, I know the route. Yes, it’s fairly straight forward. Still, I can get lost on my way home from the nail salon (and have).

I arrived home, took a deep breath, made sure all the tears were gone before I went in the house, and then I got the mail. What had arrived? My Runner Passport for bib pickup, and all the Boston Marathon runner’s info. I walked into the house, Nick asked how my day was, I looked at him, and then the mail, and, yup, started crying again! “Whoa, why are you crying?” he asked. “Because I am running 22 miles tomorrow and 26 miles in less than a month, and I am scared,” I told him. “You can do it,” he said. “You’ve come this far, you’ll be fine. Just don’t cry on the course or you won’t be able to run.”

Well, I can’t promise I won’t be crying along the course, but I know deep down that he is right. I can do this. I will be fine. And I know there will be so many friendly Running for Rare Disease team and community members, including NORD, along the way, as well as many others running for charities, that I will forget my nerves and enjoy the moment. (And that Cory will be there early with extra water and fuel.) Because that’s what it’s really about – all those people who will be with us (in body and in spirit) along the course tomorrow and on Marathon Monday. Alone we are rare, together we are strong!


My Boston Marathon Packet

My Boston Marathon Packet

There are still a few hours left to buy dinner raffle tickets – we draw the winner tomorrow at brunch! And you can also put a song on my playlist for just $5. Details for both are on my fundraising page: Thank you!

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5 comments on “Nerves
  1. Colleen Rice says:

    Thank you so much for all you are doing. I’d be scared running a race like that! All the patient partners and I are cheering you on. Our battles may be different but both take dedication and support! We are in this together! We cry, we scream, we give up, we keep going. We are human.. We push forward the best we can!

  2. Erica says:

    In dealing w MPS I always say ‘1 day at a time’ or whwn it’s really hard ‘1 hurled at a time’ so for your run and runs perhaps it shall be ‘one step at a time’?
    Beat wishes hun!


  3. Pamela lynch says:

    Amy!!! You will SO do this. And guess what? When we run long distances, things DO go wrong. Count on that!! But just like other challenges in life, the key is working through them. You have prepared for this. You’re ready. Problem solving will make you a stronger runner. And problems make for awesome war stories!!! Also. On being slow. Twice I have finished LAST in races. Seriously. The accomplishment is the same. More impressive I think! So be proud of the distance, you and I will be on the course longer and have lots of fun!!! Can’t wait to see you in a few weeks, wish I was there tomorrow!

  4. Emma Rooney says:

    Amy knowing this about you makes me feel (a little less) nervous about Marathon Day! That being said, marathons are no small feat so perhaps being nervous is appropriate. I will carry rose petals from my friend’s garden (she also has Gaucher) and this will help keep me calm and focused.

  5. Susan Mortarelli says:

    Amy, I have recently been diagnosed with one of those 7000 rare diseases, Dercum’s Disease or Adiposis dolorosa. It effects my vascular, neurological, lymphatic and metabolic systems. It grows this mutant fat tissue around my blood vessels and nerves.
    I used to be a huge runner, but longest runs were only 10K.
    now with this disease I have days where the pain is like Kryptonite and I can hardly get out of bed.
    Your “Nerves” title caught my eye.
    I’m a Christian and you will run past my big white church in Hopkinton within the first 3 miles of the race. We will be praying for you and all the runners. I pray over you one of my favorite verses,

    Phillipians 4:6-7 NLT

    Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”


    Psalm 18:30 MSG

    What a God! His road stretches straight and smooth. Every God -direction is road-tested. Everyone who runs toward him Makes it.

    Know this, in our eyes you have already won the laurel wreath of victory because of your service to run for us.

    Godspeed –

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