While I often joke that the reason I am running the Boston Marathon is so I can buy one of the jackets, the real reason is I wanted to do that one final thing I had yet to do as part of this incredible Running for Rare Diseases (RFRD) team: have my very own patient partner.
I have been so very blessed to have become close with so many patient partners within our RFRD family over these last few years, but they all had an actual running partner. This year, for the first time, I have a partner, too!
But before I knew who that partner would be, I listened to Shauna, a 10-year-old veteran patient partner, at our 2015 kick-off meeting give us all some pointers on how to get to know our partners. Amongst other things, she told us to ask questions, get on the same level and have fun with them. (She explained it much better than I just did with the brief summary – I think thereâ€™s a video if you want the full description!) I have kept Shaunaâ€™s tips in mind since that moment – and we have followed them all, at least in our own wayâ€¦
From the moment Phil introduced me to my patient partner Jen via e-mail, we were like little girls with pen-pals, eagerly writing each other, asking question after question, laughing with each other at our shared enthusiasm. We found we have so much in common:
- We are both mothers above all, who would do anything for our kids (although she has three and I have one).
- We both push ourselves to the limit – and sometimes beyond.
- Neither of us ever has enough time to do everything we want.
- Neither of us have let health issues keep us from doing anything.
- We both believe that being positive is the best way to get through tough times. We share a favorite quote that Jen recently reposted on Facebook: â€œMy mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor and someÂ style.â€ – Maya Angelou (How can you not love that quote???)
We also recently discovered that we share the same dreaded â€œanniversaryâ€ month – and I donâ€™t mean in the romantic sense. We were both given major health diagnosis in March three years ago. It was March 4, 2012 that Jen first started with symptoms of Rheumatoid Arthritis (she had already been diagnosed with Hypoparathyroidism in 2004). I found the first lump on March 14, 2012 and was diagnosed with breast cancer on March 20. Neither of us had an easy road for a while as we dealt with our new diagnosisâ€™s, we did what we had to, and are both in better places now. But neither of us are big fans of the month of March.
In an attempt to drown out the negative memories March brings, I often plan fun things to distract myself and some of the loved ones I know share my feelings. One of the first things planned was a fundraiser, thanks to my friend Sean Fullerton. He performs the first Saturday of every month at 3 Restaurant in Franklin, and he arranged for me to have a raffle during his March 7 performance. Jen and I were excited about the night, both to see each other and raise money for the Genzyme/NORD NIH Undiagnosed Diseases Fund, as well as awareness for Hypoparathyroidism.
Darn month of March pulled its lion routine, though, and put Jen down for the count with a very mean bought of bronchitis. She said it was the sickest she has been since she was first diagnosed with RA three years ago. It was a tough, scary time for her, and I was so amazed and humbled when, amidst it all, Jen wrote to share how thinking of me,Â seeing my running posts,Â hearing about my 112 laps and resulting heel pain impressed and inspired her. I couldnâ€™t believe it, and immediately wrote back that SHE gives ME strength – I am in awe of all that she does. So in addition to being partners, weâ€™ve become cheerleaders for each other – I know if I need encouragement, I can count on Jen, and hope that she knows she can count on me!
While we missed Jen terribly at the fundraiser, many of our RFRD team and community came out to support us. It was also awesome to see so many people who just happened to be eating at the restaurant come up to talk to us and buy raffle tickets. We raised nearly $700! Thank you to everyone who attended! And a special thank you to Sean Fullerton for his awesome performance and never-ending support. (You can support Sean by voting for him in the Worcester Music Awards – Best Solo Act and Best Blues Act!)
March did bring both Jen and I good news, though. Jen has been named the 2015 Adult Honoree for the Central Mass Walk to Cure ArthritisÂ and (while vacationing with family in Florida) I got a new job! Maybe this will help us both look at March a little differently in future yearsâ€¦
P.S. It’s not too late to win the Catered Dinner for 10 – click here for details! Winner will be drawn after the charity run this Sat., March 28. And if you want to putÂ a song (or songs) on my marathon playlist, just go to my fundraising page,Â donate $5 per song, and put the song titles and artists in the comments section. I will add them to my marathon playlist and think of you when they come on while I’m running the marathon!Â Thank you! (Can’t wait to hear your song choices!)
Great post Amy, what a great team you two are! Just last night Ed &I were planning who we’ll invite to that catered dinner if/when we win. Looking forward to seeing you breeze through this Saturday AND on marathon day.
I love it! Wishing you luck – and glad you’ll be there when we draw the winner! As for tomorrow and Marathon Monday – not sure I’ll be ‘breezing through’ but that would be nice! 😉
I really, really, REALLY need to write a posy and have been pondering it for wks, writing myself notes I want to include and just run our of energy by the end of the day so another day goes by.
I AM always glad to read everyone else’s posts!
Best wishes in your new job!
Thanks Erica! And I do the same things – always writing myself notes on what to include in next post… Look forward to reading your next one!