I recently took a week off to travel up the California coast and visit family and friends in San Francisco. My training plan had me running 13 miles that weekend, so I convinced my best friend Liz, who lives out there, to register for the Golden Gate Trail Run Half Marathon in the Marin Headlands with me. Training in sunny California would surely be more enjoyable than the frigid, icy New England winter, right? Wrong.
There was no ice but we had almost every other element working against us: torrential rain, wind, high elevation, mud, and steep inclines. When the alarm went off at 6 a.m. we checked our email hoping that they’d cancel the race due to the terrible conditions. No such luck. If it wasn’t for our mothers posting how proud they were of us on Facebook, we might have rolled over and gone back to bed. But we got up, layered up, cut holes in trash bags to wear as ponchos, put our iPhones in Ziploc bags, and begrudgingly crossed the Golden Gate Bridge to the race.
As we stood at the start line, having no idea what we were getting ourselves into, we looked at each other and with a silent “Let’s do this!” we started to run. Liz is a faster runner and more experienced hiker (because yes, at points we were hiking) than I am. When she’d get far enough ahead of me, she’d stop, wait for me to catch up, we’d high five and carry on together. At points where I had to walk or wanted to stop, the fact that she was waiting for me around the corner kept me going.
We talked ourselves through it a few miles at a time, and laughed about anything else to keep ourselves distracted. We crossed the finish line holding hands and felt a huge sense of pride for accomplishing something that had felt so daunting only a few hours earlier. Although it was just half the distance I’ll run on April 21, it was good mental preparation of how to keep a positive attitude and take it one step at a time. It also made me realize how important it is to have a partner; how much easier it is to get through a
race anything in life when you have support along the way.
Which leads me to my patient partner, Gracie. At the age of 2, Gracie was diagnosed with Shwachman-Diamond Syndrome, a rare disease affecting the bone marrow, pancreas and skeleton. She is one of approximately 1,500 patients in the U.S. and 3,000 worldwide. Gracie was in and out of the hospital and had multiple surgeries before the age of 6. I met Gracie for dinner recently after a few phone, text and email conversations. She is a warm, bubbly and bright girl, our conversation flowed easily and it felt like having dinner with a close friend.
One thing that shone through as we talked is how close she is with her family – her parents, older brother and sister – her support system. She told me about how her mother was the past president of the Shwachman-Diamond Syndrome Foundation and started the Rare Disease Day event at the State House, and said, “Yeah, my mom is pretty awesome.” Not something you typically hear a teenage girl say about her mother. Her family has not only supported each other throughout her diagnosis, but also supports Gracie in her dreams of becoming a famous singer/songwriter. And she is well on her way, having released her first album in 2011 and currently studying at Berklee School of Music.
I had the pleasure of seeing Gracie again and meeting her parents at Genzyme’s recent Rare Disease Day event. This is a meaningful and probably very busy day for their family, so I didn’t expect they’d be able to come to our event. Sure enough, there they were waiting, at the finish line of the relay run for me, being supportive even though I’d never met them before. It was so nice to share part of this special day, meant to bring awareness and unite the rare disease community, with them. I have the feeling it’s the beginning of a long-lasting partnership.
Whether you are training for a marathon, coping with the diagnosis of a rare disease, or grieving the loss of a child, as Blyth Lord shared with us on Rare Disease Day as she shared her story about losing her daughter at the age of 2 to Tay-Sachs disease, it’s impossible to get through it alone.
Shameless plug for those in the Boston area: Gracie will be performing live at our fundraiser event, this Friday, March 7 at Tavern in the Square in Allston, MA from 6-9 p.m. Some great raffle prizes and free appetizers available. Suggested donation of $15 in advance here or $20 at the door. Hope to see you there!