What if I never even had diabetes? What if I didn’t bleed all day? What if it’s really just water? What if the doctor was wrong? What if tomorrow it’s gone? What if I never, ever eat again? What if they find the cure? What if we run out of insulin? What if none of this ever happened? What if I’m part of a plan? What if it’s all a scam? What if I never see again? What if I never find the answers I’m looking for? What if my parent’s never stop blaming themselves? What if they never stop pointing fingers? What if I’m never plugged in to a pump? What if all of it was free? What if my work doesn’t even matter? What if I don’t make it? What if it’s all for a reason? What if I don’t get the job? What if this was my purpose? What if I’m a piece of the puzzle? What if I really make a difference? What if this made the fabric of my being stronger? What if I can be what they hoped? What if I never, ever found out I was this strong?
Last night a small group of us adult T1D’s got together for dinner, in an effort to get to know one another better. These are the type of things I love. Anytime I have the chance to meet someone new and we can share perspectives on diabetes, I’m all for it. We had the chance to share diagnosis stories, tips on personal exercise habits and share articles we found on the web. My favorite was a story on Bea Quirk and I had to share this story from boston.com. I had never heard of her and apparently she lives in Charlotte too, but just reading this made me feel all warm inside. I know I could be more ‘swan’-like.
Living With Diabetes by Bea Quirk, May 30, 2011
Bea Quirk was recently awarded a medal of honor by the Joslin Diabetes Center for having lived with the disease for more than 50 years. A Massachusetts native, she was treated at Joslin from 1957 to 1981. That year, she moved to Charlotte, N.C., where she is a freelance writer. She has a bachelor’s degree in journalism from Boston University.
For me, living with diabetes is like being a swan. Although swans appear to glide gracefully and effortlessly upon the water, underneath they are paddling like hell.
At least it has felt that way in the 53 1/2 years I have lived with the disease. I was almost 3 when I was diagnosed, and my earliest memories are of being in the hospital after my parents rushed me there in a coma. I beat the odds coming out of it — and living as long as I have.
No matter how long someone lives with diabetes, it is about managing a delicate balance: acknowledging that diabetes is an integral part of who you are, but not the defining essence. Another is taking whatever comes with humor and grace.
I try to live by the commandment “Thou shalt not whine!’’
Over the years, I have shared with only a few how tiresome it can be to always be thinking about blood sugar levels and how what I eat will affect them. It can be aggravating to always make sure I have easy access to food and insulin. I frequently have self-doubts about how well I am managing.
Losing the sight in one of my eyes over a 35-year period has not been easy. I have grieved in private over the loss and the resulting limitations. But I have found ways to get around that limitation — and others. My parents always told me there was nothing I could not do because of my diabetes, and with some resourcefulness that has remained more or less true.
Living with diabetes is not always onerous. Most days consist of graceful gliding, as the paddling underneath is second nature, something done automatically. Although I do not hide my diabetes, I am proud that many people are unaware I have it.
There have been unexpected gifts as well. I am good at planning ahead and preparing for contingencies, yet flexible when dealing with the unexpected. (Still, I tend to fret and wish I were more spontaneous.)
Diabetes has also enabled me to drink deeply from what I call the well of infinite kindness. I hope it has made me a more compassionate person. I have been the recipient of innumerable acts of kindness and generosity, large and small, that have touched both me and the giver with grace.
It is said that an African chief, in preparing his warriors for battle, told them, “I do not ask that you be unafraid. I ask that you act unafraid.’’ I have found that in living with diabetes, it is how you act in the outside world that defines you far more than the disease inside.
If you’re like me and grew up in the Charlotte area, there’s nothing quite like the anticipation of spending a springtime Saturday at Carowinds Amusement Park. As my friends and I drove south on Interstate 77 in the darkness of 5 am, I was more excited about this trip than any previous wave-pooling, roller-coasting, funnel-caking excursion. This trip was a mission. On this Saturday in late April, Carowinds was hosting the 2013 Walk to Cure Diabetes sponsored by the Juvenile Diabetes Research Foundation. The JDRF is the world’s largest fundraiser for type one diabetes research. Type 1 diabetes (T1D) is an autoimmune disease where a person’s pancreas stops making insulin, a hormone needed to get energy from food. It strikes both children and adults randomly and changes their lives forever, resulting in insulin dependency via injection or pump. The annual Walk draws teams of families and friends of diagnosed Type 1 diabetics walking with the goal of raising money for important diabetic research. This year’s Walk at Carowinds drew nearly 6,000 participants walking for the disease that affects 30,000 new cases every year.
The Walk to Cure Diabetes is always a special day for me since I was asked to serve on the Walk Committee, handling the entertainment and media duties. That seemed like a natural fit for me considering my background and it was a great way for me to give back and show my appreciation. You see, in May of 2010, I was one of those 30,000 and was diagnosed with Type 1 diabetes at age 35. It has been a long road to get myself to the point where I understood, comprehended, and accepted my condition. The work of the JDRF and the help of the Charlotte/Greater Western Carolina’s has helped me learn about T1D and introduced me to a community of friends that help us all understand diabetes and collectively channel our fundraising efforts. They have welcomed me with open arms and allowed me to be very involved with their many community-based fundraisers. And to see this massive undertaking, completely directed at my medical condition, and to be involved in the process, is both overwhelming and humbling.
But there is plenty to do as we await the arrival of the day’s participants. The large stage has been built with an impressive sound system to reach the masses and we have local radio personality “Tanner” from ‘Tanner in the Morning’ who will be our master of ceremonies. I have tapped Vyzion Radio’s DJ Jojo Stubbs, who’s two year-old granddaughter was recently diagnosed with T1D, to serve as the morning’s musical entertainment, he’ll be playing the standard sports themed jams that will get everybody pumped and in walking mode. Another highlight of the Walk were the warmup exercises performed with local trainer Julie Sawyer of Tuff Girl Bootcamps assisted by the Charlotte Bobcats Ladycats dance team. What really set this year’s walk apart from previous years was a special visit by Charlotte’s Mayor pro tem, Patrick Cannon, who carried a proclamation by Mayor Anthony Foxx recognizing the day and the JDRF for it’s efforts.
The event is as colorful, vibrant and full of life as the attendees and participants that fill up the park’s Palladium Plaza. Brightly colored tractors and forklifts provided by sponsor Sunbelt Rentals hold up banners and signs directing Walkers towards registration and refreshment stands. These people are energized, focused, and most definitely determined. ‘Team B-Force’ is all adorned in matching blue t-shirts showing their support of Brady Sutton, a young, energetic boy diagnosed with T1D. Brady’s mother Anne, a staunch research advocate, has been here before and appreciates the camaraderie among the volunteers and the dedication they have to finding a cure. Another large group in neon green shirts are showing their support of ‘Andrew’s Quest’, and the orange group huddled by the stage are here for ‘Madison’s Motor Patrol’. After a heartfelt rendition of the Star Spangled Banner by another person who’s family has been affected by T1D, this crowd is ready to go walking!
As one of the organizers, I don’t join in to walk the entire 5K route. Most of us stick around the plaza area assessing how smoothly the registration process was for folks, or how stocked the refreshment stands are for the when the walkers return. One of the tricky aspects for organizing JDRF events is remembering the special needs for all those in attendance; we are type one diabetics after all. The game of balancing blood sugar can be a gamble when combined with strenuous activity on a warm day. These prepared tables are stocked with healthy lettuce wraps, protein-filled granola bars and low sugar fruit juice, all provided by generous sponsors. Seeing all this effort; an entire amusement park at our disposal, the thousands of dollars in sponsorship donations, and not to mention the countless hours of preparation by the JDRF staff, really paints a picture of the scale these people are working on.
The JDRF was founded in 1970 and to date has raised more than $1.7 billion for diabetes research. More than 200 Walks are held each year in the U.S. and the Carowinds Walk is in it’s 23rd year. I am only in the 3rd year of what will be a lifelong partnership between me, the JDRF, and my new extended family. Today, we raised more than $800,000 for research. We didn’t quite reach our goal, however you would have never known judging by the faces of each and every walker as they crossed the finished line. And everyone had a memory-filled Saturday at Carowinds in the spring.
Our “Walk Season” was still not over yet. On June 18th, we gathered once again at McGlohon Theatre for our annual meeting and awards celebration. As if this organization, in my mind, hadn’t already done enough, I received a Golden Sneaker Award for raising over $1,000 with my own Walk team, Ones N’ Noses. Now I have received many little league sports recognitions, maybe a perfect attendance certificate twice, but there is something special about the diabetes trophy given to me during the award banquet. It doesn’t remind me that my pancreas doesn’t work or it doesn’t remind when to check my sugar or take an insulin shot. But it lets me know that there are people out there that are trying. That there are people out there just like me. And that there is an organization out there that’s going make sure a lot of people have many more happy, springtime Saturdays at Carowinds.
This is my first blog entry. I’m not sure why I’m attempting to be a blogger. I’ve never really seen the point in it especially if you weren’t a famous writer or critic and getting paid for your opinion. Then I discovered the #DOC, Diabetic Online Community, and everything changed. I found other people that have what I have. And they’ve had it longer, and they know more about my condition and they all sound so smart. I’m new to this, but what I’ve learned is the strength of this community is out of this world. The information and resources at your fingertips is unreal. I do a lot of volunteer work with my JDRF Chapter and it’s helped me immensely in understanding type one diabetes. But I can go farther. I can do more. I can learn more, and I can teach more. I’ve seen the importance of connecting and sharing. And I want to be a part of it. If you can cut and paste the link below into your browser, it will tell you how I got here. I want to know how you got here.
Me, T1D, and the beat of life by a fool in the rain.