Today I am presenting a guest blog by my friend Trip Stoner. I met Trip at TUDiabetes and her posts are truly inspired. I know readers will love this post, which marks World Diabetes Day. In case you are interested, Trip has another post on this site and you can find it here. It is also well worth reading.
See more at: http://www.radiabetes.com/hope/#sthash.SL8k4vMt.dpuf
As World Diabetes Day approaches us, I am surrounded with feelings of hope. Emily Dickinson defines hope as “the thing with feathers that perches in the soul and sings the tune without words and never stops at all.” For a long time, I have let hope sit in my soul, and deep down I know that one day my hope will turn into reality.
Just 5 years
“You are lucky, a cure is five years away,” is the promise made to all of us when we all were diagnosed with diabetes. Twenty plus years later since my own diagnosis, that promise has not been kept. But I still hold on to hope.
“This is the newest gadget to help you manage your condition” is the phrase we often hear in our doctor’s office. And that phrase is true. From the first meters with guillotine to today’s meter, we have come a long way. Insulin Pump improvements are amazing. And the Continuous Glucose Monitors (CGM) improvements, if you are lucky enough to have one, have revolutionized how we manage. All these things, fuel my hope.
Lately, most of my hope comes from parents of young Type Ones (T1). When Dr. Ed Damiano’s young son was first diagnosed with T1, he made a promise to the son that by the time his son would go to college, he would have a bionic pancreas that would do all the calculations to keep his son safe. And Dr. Damiano is keeping his promise. His team at Boston University are the frontrunners of the bionic pancreas called iLet. This device is one of the many hopes I dream about.
Also, there is an amazing group of parents at Nightscout/CGM in the Cloud. These parents figured out how to send the data from a CGM to the Cloud, so they could see their child/loved ones data no matter where the child/loved one was. This is huge. They offer a Do-It-Yourself project to anyone, and spend hours online helping others complete this project when help is needed. In this age where profits in the pharmaceutical world are everything, they simply ask others to pay it forward. I am humbled by their actions. I feel so much safer knowing my husband can access my data while I am out of town and alarms will go off when I am low, and he can make sure I am safe. I cannot imagine the relief of worry lifted from his shoulders. I can only state I feel more secure and know I have safeguards with me. And with that tool, my heart is filled with hope.
But my greatest hope is for a cure. The end of all of the measuring, calculating, needle poking, lows, highs, and complications. To be honest, I am at the point in my life where I am okay with most of those things now. I am okay with jabbing myself with needles multiple times a day. I am okay with carb calculating. I am okay with going to my endocrinologist and discussing where I am on my treatment plan. I am okay with fighting with my insurance to get what I need. Personally, I know I can do it. I know I am quite capable of handling whatever diabetes throws my way.
Tears and fears
What I am not okay with is the child that is just diagnosed. I am not okay about the tears the parents and the child will have those first few months of needle jabbing multiple times a day. I am not okay with that child and parent dealing with the daily routine of diabetes care for the rest of the child’s life. I am not okay with what the child will face during their teenage years of desperately wanting to fit in. I am not okay with the child one day dealing with diabetes burnout. I am not okay with the parents worrying about lows that will occur in the daytime at school and will occur in the middle of the night. I am not okay with the arguments that child and parent will have over diabetes management. I am not okay with the shift of the parent’s worrying, to the child’s future soul mate. This is why my hope never falters.
The cure. I don’t believe it is five years away. But, I see it on the horizon. One day, hope will find the cure. Look what hope has done so far. Dr. Banting found hope in Insulin. Dr. Damiano is finding hope in iLet. The Nightscout team found hope in data. Many find hope on the Diabetic Online Community. Hope is everywhere. Hope is powerful. Never underestimate the hope in someone’s life.
Hope. I hold onto hope tightly. I treasure it. I hope others do too. Because together, our hope turns into dreams, and I am a firm believer that dreams do come true… every single day.