Using a Life with Diabetes for Good
Living with diabetes has its moments… maybe I should say memories. When I was diagnosed my parents struggled for a bit with, “My 5 year old is diagnosed with what?” My father thought I ate too much sugar and my mother sat in silence taking it all in and assessing.
While my father had a very hard time dealing with his grief over my situation, my mother, true to form, sprung into action. She talked with our pediatrician who had made the diagnosis, and he assured her if any little girl were to thrive in life it would be me, because of my mother’s strength and ability as a parent. My mother, by profession, was a social worker and as she waded through the information, she decided how she could best help me emotionally. For her, the job was clear, figure out how to help me be independent.
For my father, his direction was far less clear. As a matter of fact, he emotionally had a hard time figuring out what to do for me. My mother realized this could have a crippling effect and she offered my father a suggestion. Help find a cure! By making him focus on the disease it created a proactive approach for him mentally and stalled out his grief. My father was a pilot with TWA and traveled all over the world. He had friends in many countries and my mother put him to the task of finding an organization that could use his talent for making friends and his travel to further the cause for finding a cure.
Moments like this leave all of us faithful, thoughtful and needing a plan. Is it fate that creates these events? Is it simply the need to focus and to find your way out of the feeling of loss? Is it a higher power? Whatever you believe, the test has come and learning to respond and not react is key for your children.
My father stumbled into a small group in
who were looking to start a non-profit that was about reaching the goal of a cure for type 1 diabetes. This small energetic group was not comprised of powerhouse CEOs looking for a tax shelter, or policy makers looking for votes, or insurance companies looking for cash outlets. It was several parents, like my dad, who needed to put their energy toward something proactive for themselves and offering a response their kids would eventually appreciate. Philadelphia
I remember sitting in the living room of our house and this very interested woman talked with me, and eventually she wrapped her arm around me and said, “we’re going to find a cure”. Her name was Lee Ducat and her energy formed Juvenile Diabetes Foundation, JDF, in 1971. My dad became her international ambassador, helping to bring researchers from England, Milan and Israel together to form working partnerships toward reaching a cure.
My direct involvement with JDRF over the years went from poster child to non-existent, as I went on to lead the life I wanted, healthy and independent. Over the years, I would see signs for the Walk to Cure Diabetes, I noticed Lee stepped down as Executive Director, which any excellent founder understands for a charity to succeed you need to give the helm to those most capable of taking it to the next level. I saw the name change from Juvenile Diabetes Foundation, to Juvenile Diabetes Research Foundation. And all the while I was living my very independent life.
When my dad passed away, the request was in lieu of flowers to send money to JDF. I cried b/c my dad always made the comment that he would give me his last dime if it made a difference. I never lost site of JDRF, because it was so emotionally connected to my dad. Its growth and success made me smile and feel him close by.
Through personal illness and frustration, I tapped into my JDRF roots three years ago in an effort to find other people living with diabetes in my area. While it was not as easy to connect through the National Chapter Web site, I hit a few internet sites comprised of local parents in DC and my relationship with JDRF officially rekindled last year when the Capitol Chapter asked if I would be willing to chair outreach. Uncertain I would make the grade, I nervously accepted. My first experience with the Capitol Chapter was the Night of Hope Gala in DC.
My husband works in a non-profit, and charity events are a regular part of our lives. I arrived with my eyes open looking to compare the event to others similar in format. I asked my husband to be honest with his opinion. For a gala, it is a fairly small event, roughly 675 people. The silent auction was well laid out with lots of options. It wasn’t until we got into the live auction that I came to understand the feelings of our parents, who would otherwise feel helpless and frustrated.
For those who are not familiar with charity auctions, the effort is to have all auction items donated and the early bids are generally unbelievable deals with the hope that bidders will raise the price to exceed the value, which is great for the charity. Some items you know will be big sellers and others will be a great deal for someone. Either way the charity gets the benefit. What made JDRF Night of Hope so different was the small size of the group and the money raised. When I realized the man sitting at the table next me bid 20 thousands dollars on his donated item to challenge another bidder, and in turn left his cash on the table for JDRF, I saw what kids never see in their parents… the challenge to change the circumstances their children are faced with. This event was half the size of others, and managed to raise equal or more money. JDRF is a colossal proactive approach for parents and its current parents are the energy and continuation of the foundation I witnessed as a kid.
Few non-profits can say, “Of each dollar raised 87 cents goes directly to research.” JDRF has been a flagship of positive intention, and a lot of this comes from one major difference, parent involvement. The intention is to find a cure, not overstuff the organization with layers of bureaucracy and overvalued staff, but skeleton staff for local chapters who lean heavily on the volunteer power of parents.
But sometimes waiting for a cure becomes a frustration. And those who work for the organization, they have a job to do, they must keep asking and suddenly burnout erupts. I can understand fully that feeling of burnout, checking blood glucose, insulin issues, pump education, calculating when I’m on vacation, and every plate of food gets my full attention to calculate the carbs… add to that waiting for this to go away.
However, I need to offer advice to my readers. When I was 18, I was standing in line at the airport waiting to fly to California with my mom, and a woman was staring at me from behind. It started to get uncomfortable, she smiled and seemed to be looking for an acknowledgement, and so I turned away. As my mom and I walked away from the counter a woman called out to us. It was Lee Ducat, her gaze went from my mom to me, and she said “This is good luck, I’m headed to LA to work on getting a telethon organized” and she looked at me and said “To run into you is all the luck I need.” We spent a few minutes talking and then as we started to part, she said, “You know we sent cells on the space shuttle and they split.” I had no idea what that meant. Realizing this Lee said, “Diabetes can’t keep you from going into space.” This is a reminder that while waiting for a cure, science is still offering those living with diabetes freedom, and we have to remind ourselves not to give up. Space is a not the final frontier for us, but it is one we CAN encounter and JDRF research dollars supported that small step. Small steps do measure into great strides!
Today, I went and watched the Walk to Cure Diabetes on the National Mall. Families, friends, college students, high schools and corporations come walk the mall and raise money. And teams have t-shirts to identify themselves, examples that I loved: Claire, a high school student, brought some of her friends and their t-shirts read “Claire’s Lifesavers”, a corporate team t-shirt read “Walking for Diabetes…Cure AHEAD! While there, I decided that the next walk is June 3 and with the number of people feeling burnout, I’m not going to form a team, but be a lone walker, it’s my disease and I’ve been alone with it for years. More of my friends are more apt to donate money than to take the time to organize and come to the walk. Some parents and people living with diabetes are burnt out, yet inside they are still hopeful, and I’m willing to expend the energy to walk, probably run the distance, and continue to believe a cure is just that close. It’s worth every dollar we raise!
I’m grateful to have Health Central offer me a place to share my experience and feelings about living with diabetes. And for the first time, I’m on my soapbox, but with good cause! Federal dollars have decreased in many areas of medical research. Last year cancer research lost 40 million. Type 1 Diabetes research has flat lined for 5 years, and overall medical research is down eight percent. When the US lags in research, it has a global effect, particularly when research is done in partnerships, such as those JDRF participates in. If we can’t get our piece of the puzzle done, it delays another research facility in another country from moving forward as well. A strong reason our personal contributions become even more vital!
Therefore, if you can’t spare the time to fund raise, then let me be your voice, offer $1.00, $10.00, $100. Whatever you want to give! I’m signed up for all of us and I believe this is part of outreach, when you tire, someone will help. When you burnout, I’ll run with it, it’s my disease and thus part of fundraising has to come from me. That’s what outreach should be and shall be for my part in JDRF. If parents generate the 87 cents on the dollar, those of us who have grown into adults living with diabetes should be the power behind the parents to demand a cure. Come on, join the process and show me you want it as much as I do! Go to http://walk.jdrf.org/index.cfm and under support a walker, type in Ann Bartlett, VA. Remember: $1.00 is 87 cents closer to a cure! Contributions can be made until July 3.