Review by Barbara Anderson
A review of Nora’s Notes by the DAWN Youth Steering Committee member Ph.D. Barbara Anderson. Clinical Psychologist, Behavioral Scientist, and Professor of Pediatrics at Baylor College of Medicine, Houston, TX, U.S.
The flash “Nora’s Notes” is a quick overview of a longer book (The Diabetes Game by Nora Coon, 2006, published by Rewarding Health, Portland OR, USA), written by a 17-year old teenager from the U.S. who was diagnosed with Type 1 diabetes in 2001. This flash is an easy read and gives a wealth of information and insight into what it means on a practical, day-to-day level, for one teenager with Type 1 diabetes to live in a developed country like the U.S. The book and the “Notes” are divided into the thirteen topics or chapters, ranging from the intense emotions experienced at diagnosis, to tips for travelling and talking with others about diabetes.
So you can see that Nora’s Notes covers the world of diabetes from lancets to lows, and from traveling with diabetes to transitioning to pump therapy. Her voice is fresh and frank and is strongest when sharing practical tips about travel or dealing with people who don’t understand diabetes. It is important to remember that these are Nora’s notes, and her advice and experiences especially in the medical area with her parents or with pumps may be different for other teens in different families.
First, I’d like to point out what I think each of the most important players in the life of a teenager with diabetes can learn from reading Nora’s Notes—the teen him or herself and the parents, as the family is the most intimate circle in which the teen with diabetes learns to live with diabetes.
Teens
You will hear a real voice about the potholes and detours on the road to learning to live your life with diabetes. Nora also has a great sense of humor, so the dry, boring carb-counting and reating-low-blood-sugar-scenery, is easier to take in! Nora also points to the normal rebellion against their diabetes that many teens with diabetes feel, and encourages you to use this energy in a ‘better way’—which is the underlying motivation for her writing these “Notes”. Perhaps her most important message for teens is in Chapter 8: Losing Focus, when she names and describes “diabetes burnout,” a common feeling of emotional exhaustion that many teens with diabetes face. She suggests that you need to ‘figure out a way to make diabetes less of a burden” --which involves “a talk with your parents.” Moreover, Nora advises that there “should always be someone who can help you out”.
Nora explains that many diabetes doctors in today’s world understand about “diabetes burnout” in teenagers. And I hope she is right, because I think that a teen living with diabetes who is feeling burned out, really does need the support and help of their health care team. Finally these “Notes’ are spiced with very helpful advice about the importance of informing your close friends and teaches about diabetes and how to help them to help you when you may need it.
Parents
Nora emphasizes throughout her ‘Notes’, that parents need to be flexible and realistic in their expectations for their teen’s blood sugar levels as well as their teen’s diabetes self-management behaviors. She describes with passion many teens’ desire to ‘make diabetes a normal part of their normal life’. Her message to parents to be flexible is spelled out well in Chapter 2: Hospital to Home when she names the responsibilities that belong to the teen, those that belong to the parent and those that are shared.
Of course these 3 categories of responsibilities will need to be individualized to the unique needs of each teen and their parents, and it is always best when the parent-teen division of diabetes responsibilities is approved and guided by the diabetes educator, physician, or psychologist on the diabetes health care team. The same goes for Nora’s ideas on “diabetes simulation” for parents—having parents live with the tasks of diabetes management for one or two weeks in order to help them develop empathy for their teen. This can be a powerful exercise and is most effective when it is approved and guided by the health care team.
I encourage you to check out “Nora’s Notes” flash and to ask your parents, siblings, grandparents, good friends and your favorite teachers to read these “notes” also. Nora’s is a uniquely fresh and frank voice about living well with diabetes from the trenches of adolescence.
