This month we are highlighting contributions from our sameAs friends around the world, each answering the question “what are you passionate about”. Over the course of the last few weeks, we’ve been lucky enough to be on the receiving end and hear your stories about what inspires you, be it the slightly dangerous hobby, pop music, or brain research. Thank you to each and every one of you whom have lent your voice and submitted (and keep ’em coming!)
The idea stemmed out of a conversation I had with Matt soon after I moved to London over a few pints – in some ways the first informal sameAs – where we shared our stories: how we came to work in this world of science and technology, what our hopes were, how we got our starts.
My passion, to answer the question that Matt and I posed earlier this month, is to make research more efficient. That aim transcends any work affiliation, paycheck, or hat I happen to be wearing on a given day. Let me tell you why.
I’ve never donned a lab coat, or run experiments – I don’t come from the sciences at all. My passion stems from two very important people in my life and a frustration, paired with a desire to help.
As a girl, I watched my grandfather waste away, suffering from a disease I didn’t understand, watching him in less than two years go from a very active man to one that could only blink to say hello. For a long time I was convinced it was ALS. It turned out to be something different – a progressive parasupranuclear palsy – a rare degenerative disease often mistakenly diagnosed as Parkinsons, that completely wore him down unexpectedly before our eyes. Even to this day, we don’t know how that came about, or why an accident spurred such rapid degradation of his body. You can read more about him in this post, written a few years ago.
The other person, Jameson, you’ll hear from below.
This post is for him, one of my oldest friends from my time in Boston, and the reason I decided to leave a career in print journalism to help fix what to me was a frustrating, slow, and unacceptable system. Jameson was diagnosed with Marfan Disease early in his days at Berklee College of Music, not long after we met waiting tables at a local restaurant. The doctors stumbled on the condition by accident, after he suffered a fall while rollerblading in the Back Bay, where they realised the connective tissue had begun to deteriorate around his knees. They then started to put the pieces together bit by bit – realising that his aches and pains weren’t just growing pains, that the 2-inch indentation the size of a fist over his heart was not a freak coincidence, that his chest pains were real.
Jameson let me in during some of the most difficult times in his time trying to understand this newfound burden, through the series of mini-heart attacks he would have throughout the night due to weakening of his heart, to days he could barely play piano – his passion – due to the pain in his hands. He was told by the doctors that he’d be in a wheelchair by his early thirties. Even more devastating, for the first time, his dream of being a professional musician was found hanging in the balance – with a threat of that time being cut short due to a failing body from a disease most didn’t understand, and one that was underfunded.
I remember trying to allay Jameson’s fears over the years, as any good friend would, by saying there had to be an answer (I can be a stubborn thing at times), that we’d find some way to get through this, that I’d play the piano for him should his hands fail – anything that I could do or say to offer him some peace of mind. He lives and breathes music – and taking that away from him would completely shake his core. I was determined to make sure that didn’t happen. He didn’t deserve it. No one does. I poured myself into research, as so many others do when a loved one is in trouble.
I told him I’d find a way to fix him.
I still tell him that to this day, over eight years later. And in some way or another, be it through working directly with rare and neglected disease research groups or advocating better knowledge sharing practices, working in open science or even now through tool development, I’m working towards that each and every day. Jameson is the reason I believe in what I do. Not all of us are fortunate enough to work in a field that we’re truly passionate about – but I am. And I’ve been fortunate enough to come to know others such as Sharon Terry of Genetic Alliance and Josh Sommer of the Chordoma Foundation – two astonishing individuals that share similar passions (each stemming from their own stories). It’s reassuring to know people like those two are out there, pushing the envelope and asking the hard questions.
Jameson currently has the Marfans at bay and is currently a professional musician – a brilliant pianist and rockstar in Florida. I’m thrilled to be able to say that he’s living his dream and still doing what he’s passionate about: writing and playing music.
And I’m still here working to make sure he can do that as long as possible, in some way or another. That’s my passion. Every little step forward helps.
Jameson was kind enough to submit his own video (with his own music, as well 🙂 ) for this month’s sameAs. He’s a remarkable musician, but even more so a remarkable human being and inspiration, and I’m thrilled to be able to tell my story, his story, and have him be a part of this month’s sameAs. Jamie, this one’s for you.