As 2016 winds down, and you finalize your philanthropic commitments to charities that are meaningful to you, I’d like to share a personal story that has deeply impacted my life and my life’s work.
As co-founder and executive director of the nonprofit organization T1D Exchange, I’ve spent 15 years dedicated to people living with T1D, their families and the clinicians who care for them. I’ve worked alongside many friends and colleagues who live with type 1 diabetes or care for someone who does. During this time, I’ve worked to build innovative programs that accelerate research for therapies, care and solutions that will tangibly improve T1D outcomes.
For these reasons, I thought I understood the overwhelming feeling of vulnerability one faces with the severity of a health diagnosis that results in constant daily management, worry and at times the inability to control one’s health outcomes. I was so wrong. I’m incredibly humbled to admit that it wasn’t until my own health scare this past August that I really gleaned insight into what vulnerability feels like.
An Unexpected Diagnosis
Like many patient stories, it started when I realized I didn’t feel “right.” I was tired, run down; I visited with my doctor. Over the next several weeks I had a wide range of tests; ending with a procedure to see if all was well with my heart. I remember being prepped for the procedure and thinking, “I’m sure it’s nothing too serious.”
For the first time in my life, I had an unfamiliar fear for my health and the question: “What if?”
What if I do have a problem? What if —even worse…? I remember at the start of the procedure thinking “I need to be ok, all is going to be ok,” but within 30 minutes I received a very different message, “We need to schedule you for open heart surgery to repair major blockages in your arteries – you need a quadruple bypass.”
No Time to be in Denial
I was shocked, angry, and in denial. I only had a couple of days to make preparations for a 6-8 week recovery. These preparations included serious discussions about my personal and professional life, and began for me an altogether new feeling of vulnerability. I’ve always been a strong and independent person; suddenly I was afraid of having to rely heavily upon many other people to help me get through the procedure and recovery period.
Could I really count on the nurses, clinicians, therapists, close members of my own family, and even myself to survive? I was worried. I had so many questions: after the surgery, what happens if I can’t work? Will I be the same and return to my normal life? How much will this cost? Did I save enough money? As I went through my own journey, I was reminded that this is what the community I serve must face every day, for the rest of their lives. I am further awed by the strength and resilience of people with T1D and their families even more now that my own health has made me vulnerable.
A Renewed Commitment
I feel fortunate to report to you, my friends, colleagues and community, that I have returned back to work to T1D Exchange with a renewed sense of purpose, and with greater awareness about vulnerability and mortality. My experience was life-changing; not exactly the same as a diagnosis of T1D and its chronic implications, but still, very much alike in its moment of severity and vulnerability. It has made me think deeper about the work we do and must continue to do to improve life with T1D.
I founded T1D Exchange because I believe that improving outcomes in T1D requires a new approach—one that helps researchers conduct better research faster. Better because it’s patient-driven and more informed. Faster because T1D Exchange provides researchers with access to resources they need to conduct clinical studies that advance therapies designed to improve quality of life. I now intimately understand why our work is so important and am excited to expand our work to accelerate therapies and find better solutions to improve care so that patients can take control and live more enriched lives with a lessened burden. Now more than I ever I believe in our mission and work ahead. Triumphing over vulnerability is not easy; but it is a communal effort, and we will continue to bring individuals and groups together to ease the burden of T1D.
We Need Your Help
I hope you will join us on our journey. Please give to our End of Year campaign. Your support will help us continue to do our important work to ensure everyone affected by T1D has a healthy future. As I learned this past year, a diagnosis will change your life, but with a strong community of care and with innovation, the burden can be lessened.
Dana A. Ball
Executive Director & Co-founder
PS: If you make a $50 donation before the end of the year, we will send you a 2017 desk calendar featuring artists with T1D. We appreciate your support! DONATE NOW