Decades before my wife Rachel and I ever met, our family’s story with type 1 diabetes began. Rachel’s cousin was diagnosed with type 1 as a very young boy. Years later, in 1985, Rachel’s sister was diagnosed just before she left for college. Having lived so close to diabetes inspired Rachel to take action. After college she worked in diabetes research labs at the Joslin Diabetes Center in Boston, the Barbara Davis Diabetes Center in Denver, and then returned to Boston to do research at the Tufts Medical Center.
Rachel and I met in college 1989 and married 5 years later. Shortly thereafter my mother was diagnosed with adult-onset type 1 diabetes. By the time my mother was adjusting to life with diabetes, we thought we knew the disease well, even though we did have some degree of separation from it. If only that separation had lasted.
Rachel and I had three sons: Matthew is 14, Ryan is 12, and Jake is 8. On August 5, 2004, six weeks after Jake’s first birthday, he was diagnosed with type 1 diabetes. Two-and-a-half years later, on March 9, 2007, Matthew was diagnosed at the age of 9. Today, almost 5 years after Matthew’s diagnosis, my middle son Ryan still wonders whether or not his turn will come before we can find a cure.
Until I became a father of children with diabetes, providing for my family meant giving them a loving and nurturing environment, a good home in which to live, food to eat, a strong sense of morals and values, and the educational foundation on which they will build their future in the world. The role of father now also includes being a part-time pancreas to two of my three kids and a drive to – somehow – provide them with a cure. I think about my fatherly role often. And I also think about the roles my children play because of diabetes, since childhood for them is anything but ordinary.
Some time ago, I decided to ask my sons how diabetes makes them feel. Knowing it wouldn’t necessarily be easy for little boys to articulate such complicated sentiments, I asked them to tell me one word that described what it was like to live with diabetes. I approached Jake first, who was five at the time. He quickly and simply said, “Brave!”
Since Jake was diagnosed at the age of 13 months, he hasn’t really known a life without diabetes. He’s been on the receiving end of needles and syringes almost his entire life. At five-years-old, Jake couldn’t really comprehend diabetes; all he could say was that he needed to be brave.
When I finished speaking to Jake, Matt was my next target. He and Ryan (my middle son who does not have diabetes) were at the kitchen table. Matt was shy and reserved about expressing his feelings, typical for a preteen. He was hesitant to engage in the exercise, but I kept pushing.
Ryan interrupted. “Dad,” he said. “Can I…?”
I told Ryan to wait just a minute until I was done talking to Matt. Ryan interrupted several more times. Each time I told him to wait, I did so with an increasing tone of sternness. Finally, Matt said,“it’s difficult.” I told him I knew it was difficult, but if he could just try to think of a word to express that, I would leave him alone.
“No Dad. That is my word. My life is difficult.”
I was done questioning Matt and Jake. I’d gotten what I needed, one word from each of them, and I took photographs, too. My goal had been reached. I had a sense of how diabetes touched the lives of two of my sons – the two who are always in focus. They’re in foucs because at mealtimes it’s blood sugar checks and boluses. Family activities are interrupted because of emergency insulin pump site changes. Plans are altered or cancelled because of ketones and sick day rules. Our family life at times feels like it all revolves around diabetes. I was thinking about this when it hit me, what about Ryan? He had wanted to say something while I was focused on Jake and Matt.
Finally I gave Ryan his turn. “I just wanted to tell you my word,” he said. “I wanted to tell you that diabetes makes me feel invisible!”
I would never presume to compare the impact of those who live with diabetes to that of those who live with the diagnosed, but the reality is that this disease has had a profound effect on all of us. And the burden to find a cure is on all of us. When Ryan asks, as he gets ready to go to bed, when diabetes will happen to him, I want to be able to say it won’t because we found a cure, we discovered how to prevent diabetes, and we can protect you.
So what can I do to help my family and everyone living with diabetes? Fundraising. In 2010 I heard about an amazing opportunity to join nearly 1,200 other cyclists and raise money for the cure by participating in the JDRF Ride to Cure. In 2011, the 1,200 riders collectively raised nearly $5 million dollars which will be used to develop better and more effective treatments and ultimately, a diabetes cure. Rachel and I participated in the 2011 Ride to Cure in Lake Tahoe, Nevada. It was an experience which has changed my life. As I sat on my bicycle and attempted to climb the Sierra Nevada mountain passes that surround Lake Tahoe, there were many times that I thought I should just get off and walk. However, my kids don’t get to quit when diabetes presents them with a challenging day, therefore, neither do I. I kept on pedaling! Having been through this experience I vowed that I would do everything in my power to convince others to join the cause.
These cycling events have given me hope, so I guess you could say that for me, hope comes on two wheels. I grind out the miles on my bicycle motivated by my sons’ struggle. My friend, Mike Chadwick, who was diagnosed with type 1 diabetes at the age of nine, and I believe that as we ride, we can spread the word about diabetes awareness, the need to find a cure and the importance of helping the JDRF Ride to Cure program continue to grow. So Mike and I founded Hope on 2 Wheels. On June 23, 2012, together, with a total of 24 cyclists from the type 1 diabetes community, we will ride nonstop, nearly 250, miles from JDRF headquarters in New York City to Washington, DC, with a message of hope. Some of the cyclists are weekend warriors, others are competitive amateur cyclists, and still others are professional athletes affiliated with Team Type 1. The three things that bind us together are the love of cycling, the connection to type 1 diabetes, and the passion to help find a cure.
Hope on 2 Wheels is not a fundraising ride (though any donations received will be given to JDRF). We’re not asking for money, only for your support. Come join us on Facebook and provide your comments of encouragement. Watch us live on ride day (more to follow on how you’ll be able to do that). Most importantly, consider joining the cause! While we have a closed group for this ride, you can join us at one of the six Ride to Cure Diabetes events in 2012. Please check out the website http://www.ride.jdrf.org or https://www.facebook.com/JDRFRidetoCureDiabetes for more information.
All photo credit and rights belong to Scott Kasper. For more of his work visit Scott Kasper Photography.