This past weekend I carried a single dried rose petal as I competed in my first ultra-marathon, practice for an upcoming goal race. The pink petal that came along for the ride had recently arrived, tucked into an envelope with a book of poetry titled, Parkinson’s, Shaken not Stirred, from a writer living in Israel. The petal in my pocket reminded me of its sender, and with this, to remain joyful, to steady my anxious breathing and to keep going when the going got tough, over the 53.9 km hilly path.
I was already deeply into running before starting to follow the Running for Rare Diseases blog, but had yet to run my first marathon and I had never even heard of ultra-marathons (running races beyond the marathon distance) until Phil’s inspiring Ghost Train 100 Mile race report, back in November. At introduction it appeared to be an activity better suited to the participation of “real runners” and I certainly didn’t picture myself ever fitting in with that running league, especially with such limited participation in ultras from women (I’ve since been introduced to some amazing role models).
Then last October, during Gaucher Awareness Month, I happily made it to the finish line of my first full marathon. Following the marathon I took up ballet lessons for a change, slightly overwhelmed by too much running. It didn’t take long, however, until I needed to get back into my running shoes. Soon after restarting, I surprised (scared) my husband by announcing, what appeared to be out of the blue, that I was training for a 100 km night ultra, the Ulmer Laufnacht, taking place in our area at the start of summer (June 20th). Not only was I training but I had in fact already registered, even without knowing if I’d be able to do it (run that far and long). Despite some legitimate concerns from those around me, for my health, I’ve been committed to at least trying to accomplish the distance goal, while still focusing on remaining healthy and safe doing it.
Being a patient partner for the 2014 Genzyme Boston Marathon Team only brought new resolve to my training. Staying connected to my running partner’s progress, has motivated my own million tiny steps towards the start line to 100 km. With Andrew Scholte having triumphantly run Boston for me, I’ve decide I will run my upcoming ultra for Elaine Benton and continue to carry close the rose petals sent from her garden.
Despite our 20 year age difference, Elaine and I have many common interests, including cooking, gardening and writing. We also both live with Gaucher disease, but it’s likely, in this case, that our age difference is a contributing factor in our differing disease progression. Elaine had to wait that much longer for access to treatment to arrive. While the privilege of being able to run with the wind brings me such strength, it is not a possibility for Elaine and her bones. Even without the age factor, the experiences amongst people living with type 1 Gaucher disease are known to be extremely diverse.
Elaine also lives with Parkinson’s, a disease that in more recent years is receiving greater attention within the Gaucher community and research focus. While Parkinson’s only impacts a very small portion of those with Gaucher and carriers as well, there appears to be an unfortunate link emerging (as if one chronic condition were not enough). Until starting to follow Elaine’s writing, through her blog, weekly Huffington Post column and poetry, I must confess that the connection between Gaucher and Parkinson’s was not a relationship I cared to dwell on.
That was before the day a Google Alert led me to Elaine Benton’s story, she wrote:
I was born with Gaucher disease, a genetic disorder unknowingly passed on from my parents; a birthright I could have well done without. Some inherit the family estate, jewelry or a fortune, but my inheritance wasn’t something written in a last will and testament and handed to me in an envelope; it was unintentionally concealed in my DNA.
I felt an immediate connection reading her piece on Gaucher Awareness Month and proceeded to reach out to Elaine with a request for a story for the My Normal project. Almost instantly Elaine responded and thus began our “rosy exchange”. Not only did I learn Elaine’s childhood story of growing up in England with Gaucher, I also received a beautiful photograph of Elaine with a bouquet of roses. The accompanying message read:
I visited your [My Normal] site and listened to your story which I found very similar to my own, although I am much older than you…As for pink roses, when I gave birth to our only daughter (who is thankfully just a carrier) my husband brought to the hospital a basket of pink roses for me.
I was touched by the connection our correspondence unveiled. Elaine had watched Emma’s Garden and understood intimately the part in my story where:
Straight away my mom and I were surrounded by flowers in the hospital. The first to arrive, even before word had spread about my birth, was a beautiful bunch of pink roses.
Elaine went on to write:
I recently had my 50th birthday, and [my husband] surprised me by giving me the biggest bouquet I have ever seen – 50 pink roses! So it appears we share much in common – but mostly Gaucher!”.
For me it happens that:
Every year on my birthday a bunch of flowers arrive to remind me of the love that surrounds me, starting from the day I was born.
A single inbox message is what led me down my current pink petal path and as I take the train to attend 2014 European Conference on Rare Diseases in Berlin, I’m excited to be presenting a poster on storytelling and hope more storytelling links like this one transpire. Also may my preparation path to 100 km continue to be strewn with friendship and flowers. I will be running the distance for myself, for Elaine, for Gaucher, for rare diseases and also for my running partner, Andrew, who inspired this chain reaction. #WeRunTogether