Everybody’s got a story: here’s mine

 

thoughtful riva

I always wonder how people get to where they are in their lives. Best I can figure my curiosity began when I was nine. At the diner my family went to for the occasional dinner out, I would scan the room and notice others laughing, animated in conversation, or a couple with not even a word passing between them.  Who are these people, I wondered? What do they really think and feel? 

 

It’s not surprising that as I grew up I wanted to write the human interest features column for a newspaper, or that over the past few years I’ve interviewed more than 135 people with diabetes: I am fascinated by people’s “stories.” So here I share mine over the last several years since moving into this work. I hope it may offer you some clarity, or inspiration.

 

Warning: It’s lengthy. Perhaps think of it as a chapter in a book if it helps, definitely not a tweet. We know I’m not much good at that. 

 

Modified from a contest entry for “Second Acts,” that More magazine was running about changing one’s life after forty. 

 

My Second Act

 

I was 48 years old, planning my wedding, (my first thank you) and going into the hospital for diabetic frozen shoulder surgery. As if that wasn’t enough excitement, I fretted whether I’d still have my health insurance coverage for the surgery. This was seven years ago and the dot.com I worked for was bankrupt; every month scores of people were being laid off. I was to be one of them—luckily it would happen two weeks after my surgery. 

 

On the cusp of fifty, I had lost my job, was going to physical therapy three times a week and the rehabilitation chair that moved into my small apartment, which I had to use to raise and lower my arm an hour a day, gave me a time-out: What did I really want to do with my life? I was in what my friend Pat refers to as “The Void.” I didn’t know what I wanted to do for a living anymore. In my heart I didn’t want to continue in marketing communications, I’d always wanted to be in a helping profession. Yet, I didn’t want to go back to school for four or six years to earn a degree for the profession I’d toyed with – psychologist. While I wanted to help people, I wasn’t convinced that listening to their problems was an effective means for helping them change their lives.

 

At this same time something else happened that set me along the path that would become my new work– this work. I went to a diabetes educator. I have had type 1 diabetes since the age of 18, thirty years at the time, yet never had I been to a diabetes educator before, someone trained specifically to help people with diabetes manage their illness. After my first visit with the educator, I contemplated becoming a diabetes educator myself. I assumed it would be a six-month course. But this was not the case. I needed to first have a Master’s degree in pharmacology, nursing or social work. Then it was a two-year program and I’d have to practice 1,000 hours before I could become certified. So, I began looking for a copywriter job again. It was what I knew. Trouble was I also knew I didn’t want to do it anymore.

 

A year later in the midst of doing some freelance work, going on exploratory interviews and reading the famed career book, “What Color Is Your Parachute?” for the third time, my husband said, “You’re a writer and you’d like to help others who have diabetes, why don’t you write about what it’s like to live with diabetes?” I looked at him sweetly, rolled my eyes and said, “Honey, who’s going to buy a book about what I think about living with diabetes?!?” But five years later that’s exactly what’s about to happen. This July, my book, “50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It”will be published. And included along with knowledge and advice from diabetes experts and fellow patients is my own.

 

The road to here began with a roadmap. It wasn’t the first, I’d been drawing them most of my life, but this one was more specific. After I lost my job my husband and I sat on a bench one balmy afternoon and wrote down my vision: To help educate and motivate others with diabetes to better manage their condition. That vision sat in the center of a large blank, daunting white sheet of paper. Then we drew colored lines coming out going in all directions: these were to be the steps to my dream: 1) Write a column for a diabetes magazine, which I do now. One day after reviewing the four major diabetes magazines, I called the editor of Diabetes Health, the magazine that felt like it best matched my voice. I told her I wanted to write a column and led her to my web site to see the work I was doing. Presto—she called me back and said, “Looks great, what would you like to write about?” If it hadn’t happened, I would have told you, not possible. 2) Write and illustrate a bookthat would help people with the emotional management of diabetes. I did that in 2007 and self-published it. It was in the bookstore at the annual conference of the American Association of Diabetes Educators last year. This year it will be there again along with its Spanish translation. 3) Give talks to patients, and medical staff. I do that now across the country through an organization called Patient Mentor Institute (PMI). When I first heard about PMI, I immediately called but they told me they hadn’t yet scheduled their next training. Six calls, one every month, put me in the next training session six months later. Having my roadmap in place, and my heart, mind and body in sync with what I wanted to do, created the foundation I needed to keep putting one foot in front of the other. 

 

At the beginning of this road, when my husband first suggested that I write a book (and I felt that cold fear like a steel blade pierce my heart!) it didn’t hurt that a week later we met with my friend who worked as a copywriter at an advertising agency. She told us how miserable she was there. The next morning my husband said, “I couldn’t sleep all night thinking about you going back to that kind of work. Why don’t you interview other people with diabetes and write a book that shares many peoples’ experiences.” So that became my first real step: To interview others was so right it reverberated in my bones. I could capture a myriad of stories that would create a shared community and lessons learned. 

 

For two years I interviewed people. I still interview people. It’s usually a phone call, sometimes a coffee in their house or a coffee shop. I bring a little tape recorder and they bring their story. All I have to do is ask, “How did you discover you had diabetes?” and a lifetime pours out of them. My very first interview I practiced with a good friend. My first “real” interview was with a couple who discovered that their three year old son had diabetes, and they will never forget the date, September 10, 2001. While in the hospital the following day experiencing their personal world collapsing, the World Trade Center towers were doing the same a few short miles downtown, the smoke visible from the hospital hallway windows. The gravity of this interview was a sign to me to keep going. I branched out to interview acquaintances I knew who had diabetes and asked them who they knew. My circle of fellow patients grew quickly as did a community of diabetes educators, nurses and psychologists. In capturing peoples’ stories I have amassed a research library of sorts, collected a wealth of learning and understanding, and also a network of people I now know with diabetes, and in diabetes. 

 

But this book of interviews was not the book I would end up getting published, for I learned a lesson about publishing two years after beginning the interviews. While you may have what you think is a great idea, a publisher may not. I couldn’t sell the interview book. But the woman who was to become my book agent (whom I was introduced to having met her friend while on a train going to my brother’s house in Connecticut for Thanksgiving—trust me, that’s a whole ‘nother story) said let’s look for an idea you can sell. I shelved the interviews for the time being and we spent three months writing a new book proposal for my diabetes myths book and after shopping it to twenty publishers we had a deal—and I began all over again. As it would turn out, numerous nuggets from my interviews are featured in the book–so while we may hit detours in life, I know nothing is a waste. It’s been seven years now since I lost my job and embarked on this journey and five of those I’ve been avidly working in diabetes. I stopped freelancing two years into this venture because I knew if I didn’t jump in fully, I might never jump in at all. 

 

If you’ve been on this web site before, you may be acquainted with what I’ve been doing, if not, this blog began about two years ago and all my posts are archived here. I contribute regularly to Diabetes Healthmagazine. I’ve just been featured in Diabetic Living magazine. I’ve been invited to speak at the Mayo Clinic this September both about diabetes, and about my books. “Patient-expert” is a title I wear proudly now and I have earned it by putting one foot in front of the other and following my heart. I could not have told you with assurance that I would end up here, only that when I began I felt trying was worth the effort.

 

One of my messages has become that you can create an exceptional life–notdespite having diabetes–but because of it. That it can be a catalyst to greater health, happiness, meaning and purpose. What’s required is knowing how to medically take care of yourself and having the emotional resilience to weather the ups and downs. I don’t mean that you become a “Pollyanna,” but once you deal with the stages of shock and grieving, (and mind you they will re-visit you from time to time) that you will reach a crossroads that invites you to answer the question, “How am I going to live from here?” You will be better served if you can recognize that “What is, is,” and choose to honor your life by managing this sometimes-beast as best you can, and embracing more spiritual qualities like appreciation, joy and giving back. This is where, after decades, I have arrived. It wasn’t a quick trip, but I hope I can now shorten the passage for others.  

 

I knew in my late forties, as sure as I breathe, that it was time for me to finally nosedive into my dream of making a difference and create my singular road that would lead me there. With my husband’s financial support I could take a break from earning a living. With his emotional support I was loved and encouraged to keep going. The biggest challenge looking back was social: I missed having people to go to lunch with, and, admittedly, deadlines someone else gave me. What helped, however, and still helps, is having a routine: Taking a yoga class, my daily walk around the park and meeting my interviewees face-to-face as often as possible. And now seeing the early fruits of my labor. 

 

I say all the time now, “The universe keeps dropping gifts at my feet.” My husband says, “Don’t discount all the hard work you’ve done.” And I don’t. Yet I’m convinced that being on the right track, leading with your heart and following with your feet opens more doors than you can possibly imagine. Don’t be discouraged if you can only pry the door ajar slightly now. Keep tugging at it. One day it will open.

 

Today I associate most closely with something Mahatma Gandhi said: “Happiness is when what you think, what you say, and what you do are in harmony.” From the very first bench meeting my husband and I had to when he recently told me enthusiastically, “We’re only two degrees of separation from Oprah!” it amazes me where I’ve arrived. We joke that one day I’ll be sitting on the Oprah show and she’ll be holding up my book saying, “And everyone is going home with a copy of Riva’s book today!” 

 

You may laugh, most days I do too, but dreams have a way of turning into reality when you hold them fast and keep putting one foot in front of the other. 

ADA Scientific Conference

UnknownThis year’s scientific news

The American Diabetes Association’s (ADA) 69th Scientific Conference began four days ago and closes today. This is the event of the year for the more than 14,000 scientists, clinicians, diabetes educators and exhibitors to get together and share their latest research findings and emerging new medicines, technologies and products. 

Many in the diabetes community are blogging and twittering about it including Amy Tenderich over at DiabetesMine, Kelly Close at Close ConcernsDavid MendosaManny Hernandez at TuDiabetes. Even the ADA has a Facebook page bringing you the highlights. 

Due to a report from Amy we know that mid-way during the conference there were already:

389 oral presentations

100 clinical symposia (more science talks)

104 late-breaking abstracts (papers submitted after the conference program was filled)

1,538 research posters

465 published abstracts (research synopses)

150+ exhibitors on one enormous exposition floor  

Much of the news you’ll find here portends what’s to come over the next year or two. Here are just a few posts among more information that I found interesting:

The Gene Effect

Diabetes Trailblazer Wins Banting Award

Don’t Beat Yourself Up

What you don’t know (about diabetes) can hurt you

Tu Diabetes

Screen Shot 2015-02-08 at 5.00.35 PMI’m really a novice on social networking sites. Yes, I have a Facebook account, but only because everyone seemed to be emailing me telling me to have one. Then once I had one, people I never met started emailing me to be my friend. I don’t know, if you have a million virtual friends, are any of them really friends? 

I created a Squidoo Lens because my husband thought it would be a good place to share my idea that spending more time energizing positive, rather than negative, emotions helps you take more positive actions to manage your diabetes. It took me weeks to approach creating my lens, reading the online handbook, futzing, experimenting, tearing my hair out, avoiding my computer…then weeks to create it. After all that, it’s actually pretty good, but I haven’t a clue if anyone has found my lens. 

If you were here a couple of weeks ago you know I tried twittering, but as my editor just wrote me (as I had to cut 200 words from my latest article for Diabetes Health magazine), Mark Twain said he would have written less words if he had had more time.

Where do so many people get so much time to Facebook, My Space and Tweet? I just don’t know.

That said, since I want to be cool and hip and really understand this era of social networking, I’ve just joined Tu Diabetes. These last couple of days setting up the site, I admit I kind of like this one. It’s not too hard to establish an account and it’s just for people with diabetes. Now when I get a note from “a friend” it comes with the shared bond of diabetes. 

As the founder Manny Hernandez says, he started TuDiabetes so no one with diabetes will feel alone and people without diabetes will learn more about what it’s like to live with diabetes. I can admire and respect that. 

So, if you’re looking to talk with others who have diabetes, maybe TuDiabetes is the place for you. There’s almost 10,000 new friends to be made. You’ll find me there too.

A new friend and a shared view of being inspired by diabetes

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These days I know many people who live with diabetes unlike the first three decades of my life when I couldn’t drum up any such acquaintance. Over the past few years I have looked into numerous patients’ eyes at health fairs and support groups and I work with colleagues with whom I share a professional bond. 

I also now have real and true friends with diabetes with whom I do fun friend-things like riding around Mississippi for a week, and the more everyday activities of lunching, and on the weekends, spend free minutes trading intimate details of our dealings with this beast. I am awash with endorphins during those calls, secure in the knowledge that I need not explain anything; they understand the wacky ups and downs of blood sugar, the need to chew while on the phone, the positioning of our call after my walk but before lunch, the foolish thing we heard so and so say the other day and the hopeful sharing of some new research that may ease our burden one day.  

Then, every once in a while I meet a fellow traveler who is so much a mirror of myself I have to glance twice, and then again. That happened last week when I interviewedHeather Clute. Heather lives on the West Coast so it was a scheduled phone call and a last minute confirmation. She told me once we were on the call that she had wondered where in the world she was going to fit our one hour interview into her day. Yet, she decided to nontheless.

Fifteen minutes into our talk, I was chatting with a new, old friend. We had so much in common — grown women with type 1 working in wellness, our search for meaning and purpose through diabetes, our constant exercise to keep a positive outlook and a shared practice of mindfulness. I said that we’d be twins “if” not for her three children. OK, I admit it, three children is a big “if.” And so we laughed. 

I had googled Heather before I spoke to her and skimmed a few posts she had blogged. During our interview I read a few lines to her that she had written, “…we are all either choosing to be conscious or “unconscious” to the possibilities and opportunities around us. For me, diabetes has brought a deeper level of awareness to ALL of life, to every moment’s potential and every moment’s grace.” She laughed and thanked me for reminding her, it was just what she needed to hear that day.

After our talk I went back to read her posts. There are only four as Heather’s busy life, kids, school, work, staying physical, caught up with her, but I think you’ll like them. They are beautifully written and share a view of diabetes from the inside-out. 

It’s always a joy to meet someone with whom you immediately connect. It’s all the more when much as you may not want to, you share diabetes.