I may not be a 13-year-old girl, but I'll confess: it may have seemed that way if you saw the range of emotions that came over me while reading a new diabetes book by a young type 1 from Minnesota.
From laughing to crying, I was all over the place. In the end I couldn't be happier to have read -- and to recommend that the Diabetes Community check out -- the first-ever book by fellow PWD Quinn Nystrom.
The title itself should be enough to pique your curiosity, before you even crack open this 104-pager called, "If I Kiss You, Will I Get Diabetes?" Yes, that's a clever application of an actual question that young teenage Quinn (now in her late 20's) got asked back in her high school days only a few years after being diagnosed in March 1999.
What's interesting about Quinn's diabetes story is that she's been on the D-advocacy scene since even before she was diagnosed as a seventh-grade girl at age 13. Quinn's the middle child of three in her family, and her younger brother Will was diagnosed about three years before her when he was 5 years old. So from the time Will was diagnosed, then 10-year-old Quinn decided that diabetes advocacy and pushing for a cure would be her life's work.
She says that after her own diagnosis, diabetes camp became a life-changing moment for her, when she not only recognized how her life wasn't over as she'd first thought, but also met another young girl who would go on to inspire her to take D-advocacy to a whole new level. That girl was Clare Rosenfeld, who not only inspired the Blue Circle and the World Diabetes Day UN Resolution that got international recognition, but also inspired Quinn to follow in her footsteps and become the American Diabetes Association's National Youth Advocate in 2002.
Quinn's from northern Minnesota, now lives in Minneapolis and has a full-time job working as a diabetes advocate through her own business, QSpeak (another clever name!). She also has her own non-profit created in 2013 called Dateline Diabetes, which helps offer scholarships for kids to attend diabetes camps or conferences and also provides "welcome baskets" for newly diagnosed kids and young adults. She also spends some of her time being active in the Diabetes Online Community. Yes, she's totally an Amazing Advocate in our opinion, with all that she's done and continues doing to help the Diabetes Community!
Not to mention her new title as "book author" following the March 15 release, just two days after her 15th diaversary. In her book, Quinn shares her personal story about how she felt so alone and hopeless at the time of her diagnosis (despite the experience with her brother) to how she embraced her own diabetes and advocacy goals. It's a pretty quick read, since the chapters are short at only three or four pages each and Quinn writes the book in very conversational style.
We caught up with Quinn by phone recently to talk about the book, and also about the rest of her D-advocacy world.
QN) Yes, that was our first introduction as a family to the disease and it was quite a surprise. But after Will was diagnosed when I was 10, our family pediatrician in our small town of 5,000 in northern Minnesota said that the likelihood that we'd both be diagnosed would be low. And if it did happen, our family would be on the cover of the New England Journal of Medicine! After I was diagnosed, I felt that all I had to do was hang on for five years and there'd be a cure. We all know how that story goes...
What was your first entrÃ©e into diabetes advocacy?
I got involved with ADA early on after Will was diagnosed. They had a local walk and efforts we could get involved with, and that's what I was doing when I was diagnosed. Certainly, I went through a period of time when I was in denial, being a 13-year-old girl. But I went to the ADA's Camp Needlepoint and felt inspired. From there, I decided to get more involved and applied to become the National Youth Advocate like Clare (Rosenfeld) was at the time. When I was 16, I got the call about being chosen on my third diabetes anniversary. I celebrate my diaversary, so it was the best way to mark that. I really took an interest, and could see myself making a difference on that level, and it really fired me up. I've been involved ever since, and am now currently co-chairing the advocacy committee for ADA Minnesota.
What are you doing professionally?
After college, I went into corporate America and worked as an account manager for a pharmaceutical distributor. But after three years, I decided to leave and follow my dream of creating my own non-profit. Now, through my business QSpeak that I formed in November 2011, I'm doing diabetes work full-time with speaking, advocating, and writing. It means a lot to be able to use my gifts and talents in a positive way that can impact other people's lives. That's always been a dream of mine, and I'm so blessed to have been able to parlay all of this into a career. It's culminated this past year as I finished the three-year process of writing and publishing my first book.
OK, what's the story behind the book title and that question? (Spoiler Alert: she tells the story in the book, so stop reading if you don't want to know yet)
My senior prom date inspired the title of the book. He asked the question as he was going in for the kiss... and you don't have to read the book to know that he never got the kiss. That was a terrible experience to go through as a girl that age. But the sad reality behind that question is that there's so much ignorance out there about diabetes and people in this country are in need of diabetes education. He asked such a silly question that we know is ridiculous, but it's a reality that people actually wonder that.
Did that inspire you to write this book?
I wanted to write this book to bring attention to the misconceptions out there, especially about type 1 that I think more people should be aware of. I wanted to put a face onto this, even though I know it's sort of a faceless disease that doesn't discriminate. It was a way to talk about my journey, but really it's the kind of book I wish had been around when I was diagnosed. After Will was diagnosed, I went into my elementary school library to read about diabetes. But all the books they had were written by a medical professional that were over my head at that time. The only thing I knew about diabetes was that Stacey from The Babysitter's Club had it.
I wanted a book that I could have understood at that time, with someone talking to me in simpler terms. I think this is practical, but very personal and there's a takeaway from each chapter. I hope it helps people not feel so alone, like I did, to know that they have a friend in this. I never set out to be an author, but there are so many books written in the patient perspective on cancer and other disease states, it just never really felt that way about diabetes when I was growing up. There are a lot of cookbooks and books by medial professionals, but not many from our perspective.
You've also been busy creating your own diabetes non-profit called Dateline Diabetes...
Yes, the foundation Dateline Diabetes, really kicked off in January. The inspiration for the name is based on a journalism term, where a dateline indicates a story's point of origin. The whole thought is that everybody with diabetes has their own story about where they come from, where their story starts. I've had the information on my site and social media, but unfortunately I've had no one apply yet. I would love to give out a scholarship for this summer for a diabetes camp... but I think because we are so new I just need to spend more time raising awareness about it in the diabetes community. The money comes from: 1) A portion of each book sold goes to Dateline Diabetes and 2) We have people who make personal donations (we're a 501(c)3 non-profit). It's just me right now but I would love to see it expand.
And you aim to send kids to D-camp and welcome "newbies" to type 1?
Diabetes camps are my No. 1 place to visit and speak at! Camp Needlepoint (I still think it's just odd they picked that as their name!) is what changed my life after my diagnosis and so anytime I have an opportunity to go and meet other kids at camp brings me back to that moment. Because camp was such a life changing-experience for me, I want to give that opportunity to other people who might not of had that chance to go.
We also have the Baskets of Hope, which are for people who have recently been diagnosed with type 1 diabetes. It's a care package they receive in the mail. They are all a bit different depending on age, but they consist of a journal, pens, diabetes resource list, and diabetes stories. I'm currently working on something more substantial with the stories -- a bound volume that will go in the baskets.
Getting diagnosed at 13, I felt so alone. I wanted there to be a way to let people feel that there are other people in this with them. And to show them that there's life after diagnosis. All people have to do is go on to my website and fill out the form to receive a basket.
You and Will are both pretty inspirational... How's he doing now?
He is 22 and a senior in college, graduating in May. We have very different perspectives on diabetes. I'm very 'Ra Ra diabetes' and it's a big part of my life, while Will is not in the spotlight. He's very supportive of what I do, because he understands why I do it. But he doesn't do that same thing, even though he does a great job managing his diabetes. We're super close, and he taught me a lot about not letting diabetes define me. It's very important that people know that, and I'm proud that he's such a huge part of my book.
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Thanks so much for writing this book, Quinn! I had a such a good time reading it. Your story combined with Will's made me realize, once again, that we can do anything we put our minds to. Or as you phrased it in your book: "Diabetes is not a headline in my life, it's a footnote."
I found myself smiling when you talked about your parents pretending they had type 1 and having to test their blood sugars and calculate insulin based on their carbs, and how that taught everyone in the family a lesson. I felt crushed when reading about your 7th grade history classmate who wanted to change seats because he worried about diabetes being contagious, or that boy Sean who broke your heart with that dreaded Kiss You? question at the Christmas Ball. But there were moments of joy, like all of your amazing friends who decided to buy matching fanny packs in order for you to feel more included on a camping trip, or the girl who figured out you could play some tennis to lower blood sugars before having ice cream, so you didn't have to go home to get extra insulin to cover those ice cream carbs. But one of my favorite parts was how you handled that live TV news interview where the reporter proclaimed, "You don't look like you have diabetes," and grabbed the opportunity to raise D-awareness and dispel myths right there on live TV. Bravo, Quinn!
Of course, one my other favorite parts was reading about how your brother started changing his advocacy tune more in recent years, and I very much enjoyed the interview with him included in the book.
I've read a number of diabetes books from a personal perspective, including one by D-Mom Moira McCarthy Stanford that's all about teens with diabetes. But this one is unique because it's actually written from the point of view of that 13-year old girl -- being diagnosed and coping with T1D in those teen years. I like how it embraces the questions and issues in the teen voice, so they can relate.
Now, here's your chance to win a free copy of Quinn's new book for yourself...
The DMBooks Giveaway
Interested in winning your own free copy of If I Kiss You, Will I Get Diabetes? by Quinn Nystrom? Entering the giveaway is as easy as leaving a comment:
1. Post your comment below and include the codeword "DMBooks" somewhere in the the text to let us know that you'd like to be entered in the giveaway.
2. You have until Saturday, April 12, 2013, at 5pm PST to enter. A valid email address is required to win.
3. The winner will be chosen using Random.org.
The contest is open to all. Good luck, All!
This contest is now closed. Congrats to D-Dad David who is the winner!