I have learned an incredible lesson these past few years committing my heart and head to this work. Magical things happen when you get committed to something. You’ve heard it before I'm sure, and it’s true – the world opens up to you in ways you couldn’t have imagined, people come out of nowhere to help you and what you need mysteriously falls at your feet. I believe this is true for anything, a career ambition, hobby, diabetes care or dream. Hmmm, did I say diabetes care? You bet. Get committed and managing your diabetes will be easier.
But I’m talking real commitment. The kind where even when you hit obstacles, and you will, you just keep going. You get back up and take another step. You figure out another way. I was thinking about this because the other day a book agent who fell out of the sky more than two years ago when I started this work, when it was so new and nebulous in my mind that I was flattered, scared, excited and totally not ready, just dropped back into my life.
Something else happened along this journey that I could never have imagined. Among my interviews, I interviewed a celebrity. If you’re a sports fan, you’ll probably know his name. Well my friend’s 12-year old son did – Ron Santo. He played third base for the Chicago Cubs from 1960-1974, he was the first third baseman to hit over 300 home runs and win five Gold Gloves. He has also been a long-time contender for the Hall of Fame. Throughout his career he played with type 1 diabetes. Maybe you think that’s not a big deal, but it was 45 years ago. Long before glucometers, pumps and insulin analogs. And there I was sitting in his family room shooting the breeze. These things don’t happen to me, except they seem to be happening more and more. Turned out my upstairs neighbor in New York moved out West. His new neighbor? Ron Santo. Chatting with Ron I knew that the universe gives with an open hand when we follow our bliss.
So why am I telling you this? Well, for two reasons. I want to make the point that when you’re committed to your care, things get easier. You pull energy not just from yourself but from everywhere to help you. I also want to share the example of Ron Santo because he is an inspiration. Ron was diagnosed with diabetes at 18, the year he was picked for the Major Leagues. The first year of his diabetes he didn't disclose it and he kept his blood sugar down by staying in constant motion. He told me he would run around the block when he wasn’t running around the bases. His ‘ahead-of-his-day’ doctor had him go to the gym, with a friend and plenty of orange juice, and shoot baskets until he felt the symptoms of low blood sugar. That way he would recognize them when they occurred in real time on the field. Forever after, when he felt those symptoms, the clammy sweat and voracious appetite, he would down the candy bar he kept in the dugout.
Unfortunately the symptoms of high blood sugar were less recognizable and eventually they cost Ron two legs, open-heart surgery and thousands of laser eye surgeries. As I talked with Ron, from time to time he was adjusting his second leg prosthetic, yet his vision of what it takes to be happy was firm. "I've had a wonderful life," he said, looking straight into my eyes with unabashed openness and compassion. "Nobody gets through life without something happening to them and I really believe positive thinking is like medication, you gotta believe in yourself." Ron said this is what he tells people when he speaks at sports and health events across the country for the Juvenile Diabetes Research Foundation. "I can still walk," he said, "I love playing with my grandchildren and every day I work at keeping healthy like anyone else." [You can see more about Ron's struggle and spirit in the film his son produced, This Old Cub.]
Every baseball season fans hear Ron from the broadcaster’s booth as the official Cub’s announcer. “When I walk onto Wrigley field,” he told me like a man saying grace, “everything else disappears.” With all the complications of his diabetes, this is a happy man. He lived his dream and finds everyday joy and contentment in his continued work, family and inspiring others. So, I guess the second thing I want you to know is if you believe taking care of your diabetes is worth it, you’ll find the strength and ways to do it. If not, find out what makes your life worth living and it will motivate you to manage your diabetes.As Ron walked me to his front door, he leaned on me a bit and then gave me a big, bear hug. Returning home I reflected on what the universe had just given me. Just a few years before I was searching for my own purpose. I had lost my job, had frozen shoulder surgery and was wondering what to do with the second half of my life. Not knowing what else to do, I just kept putting one foot in front of the other, and poof, one day I walked into Ron Santo’s living room, and here I am now doing this work.
My Projects page provides a partial current list of what I’m reading. Last night finishing Viktor Frankl's, Man's Search for Meaning, I found many insights that seemed worthy of posting here. Many can be translated to living with diabetes. The second half of Frankl’s book examines his concentration camp experience from the perspective of 'What does it take to persevere and come through such a monumental, tragic experience?' Can there be happiness in the overwhelming miasma of suffering? Yes, Frankl says, if we have meaning in our lives.
Meaning not meant in a generalized sense like, "What is the meaning of life?" but in the most personal sense, "What is the meaning of my life at this time?" Frankl believed everyone has a specific, unique mission in life and finds meaning through enacting it. Being in service to others or a cause, loving someone or something and turning tragedy into triumph are ways to discover meaning in life. Psychiatrist Frankl believed, and I found this an interesting insight, that the field of psychiatry holds a dangerous misconception – that man is benefited by a lack of tension in life. What man actually needs, he hypothesizes, is struggling and striving for a worthwhile goal.
What does this have to do with diabetes? Many people I've interviewed actually see diabetes as an opportunity to pursue a more meaningful life. An opportunity to become fitter and healthier, and for some, help others. They see diabetes as a wake-up call that life is short, precious, and comes with no warranty. While a bump in the road, diabetes can be the very thing that makes you sit up and recommit yourself to a more meaningful life. Perhaps to pick up a dream you left abandoned by the roadside. It can be the push to start that walking program you’ve been talking about for the past two years. The only warranty life comes with is that we get the most out of it when we discover what we truly care about and do it. After losing my job at 48 I searched for a way I could use my talents to contribute to the world. Step by step that urge created my road to here. Since diabetes was my arena, I gained more and more knowledge and it's been reflected in my own better management. But even if diabetes were not my focus, the excitement of waking every day to add new strokes to this canvas I'm painting, has created a deep-seated happiness and an even deeper desire to be healthy and enjoy the rest of the journey that way.
Why hasn't the world yet realized that the attainment of wealth, status, bigger houses and corner offices doesn't make most people happy? In fact it leaves many miserable. More people are on anti-depressants because they feel empty inside. Boredom and depression flit quickly into the lives of those who are running so fast they never pause to ask themselves what would really make them happy. Frankl found that camp survivors who persevered, who held onto getting through it and coming out the other side, who looked forward to finding their families again and creating their next great work, these were the ones likely to survive. And, that there could actually be joy in the agony by finding a forgotten picture of a loved one. In that moment suffering was gone and elation existed. Frankl also points out that when a man sat on his bunk and smoked all his cigarettes they knew he would soon be gone. Immediate gratification indicated giving up. Not meaning to compare the gravity of the situation, could we not look at the same principle in regards to diabetes? If you spend more time satisfying your immediate desires – that piece of cake, skipping the gym, not bothering to test your blood sugars – are we not choosing defeat in some subliminal way?
Frankl received a letter from a young man paralyzed from the neck down from a diving accident at 17. He wrote to Frankl, "The attitude that I adopted on that fateful day has become my personal credo for life: I broke my neck, it didn't break me! I am currently enrolled in my first psychology course in college. I view my life being abundant with meaning and purpose. I believe that my handicap will only enhance my ability to help others. I know that without the suffering, the growth that I have achieved would have been impossible."
Have we not heard Patti LaBelle proclaim in TV ads, "Diabetes doesn't control me, I control it!" So here's my advice, look beyond diabetes. What is it you really care about? What is it you love to do? See your diabetes management as something you do to be well, and to stay well, the bedrock from which to create your meaningful life. Even better, see your diabetes tasks as gifts you give yourself, because they will reward you with even greater health, possibly greater than if you’d never gotten diabetes at all.
If meaning is the road to happiness, and being in service, love and triumph over tragedy are paths to meaning, then use diabetes as a catalyst to create a life of greater meaning. Most people I’ve talked to felt diabetes had not made them any less happy. They still found joy in life, and many found diabetes enriched their lives, prompting them to create greater health, appreciate what they did have and help others. Can you use diabetes as a way to create a more meaningful life?
How would you like to see diabetes talked about?
Yesterday I had the fun of being in a focus group at an advertising agency testing concepts for a pharmaceutical company's new campaign for diabetes care. We were five people on our side of the table, five real live people with diabetes, and they were three – a researcher, a copywriter and an account director. We were presented with four different concepts and asked what hit us positively or negatively about the ideas, what the ideas were communicating and what was our gut reaction. These ideas would then be worked on further and narrowed down to be presented to the client and potentially be made into TV commercials and magazine ads. Often, as advertising is developed, it is shown to potential viewers to validate whether the ideas being developed are going in the right direction. After all, we are the ones who live with diabetes, they are the ones who read about it in a brief.
It's a heady feeling to help people make decisions that will impact and influence millions; to have the opportunity to affect how they will talk to us, approach us, regard us. It gave me a deep sense of satisfaction to represent my own views and I hope the many, having listened to so many people's stories of living with diabetes. While I will not blow their cover, for this is a competitive pitch, I will tell you that two concepts resonated with me. The first because it presented living with diabetes as a progressive process best performed in a 'make one small change today' way. It was positive, it understood that this is a condition you can't get on top of in a day or a week, or just by taking a pill. Rather there are many habits and lifestyle modifications one must address to move toward living well with diabetes. The second concept that grabbed us all has a great tag line, but again my ethics prohibit me from telling you what it is. But I will tell you that it regards people who live with diabetes as powerful and positive and people who throw themselves into enjoying their lives rather than letting diabetes stop them. It inspired us. It commended us. And it's how I hope everyone with diabetes will choose to take life on after they get past the shock, anger, why me? stages and phases and realize now it's your decision truly, totally about how you want to live your life. Below you'll see my observation about being on 'the other side of the needle.' Yesterday was just as interesting being on 'the other side of the table.' It also confirmed what a hot topic diabetes is today. Hopeful, isn't it?
I typically perform my diabetes tasks in public as necessary, like taking an injection at the table in a restaurant, no big deal, no fanfare. I'm so smooth in fact, taking out vial and syringe, putting the syringe in the vial, drawing up my dose, checking for air bubbles, pulling a tuck of shirt out and injecting that generally no one notices until I put the stuff back in my bag. So I was utterly surprised and truthfully thrown when, while seated at Orlando airport having just stuck the needle in my stomach, a woman and her young son were standing directly in front of me staring in what looked like horror. I quickly thought this is something she doesn't want her young son to see, she thinks I'm a junkie....... So I apologized profusely, partly for what she was viewing, and then realizing I was in her seat.
I moved a few rows away with the shadow of 'evil' hanging over me. I felt I had done something wrong. According to my diabetes etiquette book, I shouldn't 'shoot up' without first checking that no one will see. Well at least not from the vantage point of standing right on top of me. A few moments later when clarity of mind returned I had a different thought. I wished I had told her, "Don't worry, I have diabetes. I'm taking insulin, and yes, I'm moving out of your seat as soon as I get this needle out of my stomach, sorry." My overriding feeling was this stranger now branded me irresponsible, and that is so far from the truth it disturbed me. My underriding feeling was what must it have looked like to her? It's so out of the ordinary to see people with diabetes injecting (that's a whole 'nother issue isn't it?) kind of like women breast feeding, that I couldn't blame her for her dismay and I wondered what it felt like to be on her side of the needle.
Then I recalled two instances when I was on 'the other side of the needle' so to speak. The first was while interviewing a young woman I'd met at a support group. During our interview sitting on her couch in her apartment she took out her meter and pricked her finger. When she pressed to get a fair sized drop of blood, I felt queasy. "Huh?" you say. You'll say it again when I tell you that I check my own blood sugar between four and seven times a day. But looking from the outside in, it was a little nauseating. My second experience was interviewing a type 1 woman over the phone whom I'd never met. I called her as we'd arranged and she wasn't home. I called again fifteen minutes later and she told me something about losing her cell phone. Already I'm thinking maybe a little irresponsible? Yes, apparently responsibility is a big one for me. As we began to talk her verbal responses were delayed, her speech slurred. I thought she was intoxicated. It went on for five long minutes until I realized she was having a hypoglycemic episode and then I immediately asked her if I should call 911 or if she had someone there? She told me her boyfriend was there and I heard him approach. I hung up and said we'd reschedule. Phone down, my heart was racing. I've had low blood sugar episodes, many, the ones just like hers where you're not making much sense. Yet I didn't recognize it in her and when I did it rattled me. I have never experienced someone else going through it, as my husband has witnessing me go through it so many times, and I realized how frightening it can be. So why do I tell you all this? Why do I risk sounding so utterly thick and insensitive?
We know how poorly informed the general public is about diabetes, what it is and what it is to live with. We know how many people think we're just supposed to not eat candy or that we have no willpower or why are we complaining, it's "just a little sugar." But here I am, the informed, experienced, living with diabetes person, and looking from the outside in rather than the inside out, I had a whole different experience. What I saw, sensed and heard shook me a little. Then it shocked me that it shook me.
Interesting isn't it? When you choose to look from the other side you can see what others are seeing. So maybe we can do more educating as the opportunity arises rather than reacting. I would go back now and tell that woman in the Orlando airport what I thought to tell her minutes later. I could always try of course, air travel being what it is she may still be there. Or maybe I'll look for the next opportunity. It's hard to know what it looks like, feels like, seems like from the other side when you're always inside. Maybe that's all I mean to say.
Dr. William H. Polonsky
I've had diabetes 35 years and it was only two years ago I heard something so profound it blew me away. So empowering I wanted it to be the first thing you read here. I was in an emotional coping with diabetes workshop given by Dr. William Polonsky, PhD, CDE and founder of the Behavioral Diabetes Institute. He was speaking at the Taking Control of Your Diabetes conference I attended. He opened by asking us, "How many of you have heard diabetes is one of the leading causes of blindness? If so, raise your hand." Hands all over the room flew up. "How many of you have heard diabetes is a leading cause of stroke and heart disease?" The hands stayed in place -- up. "How many of you have heard diabetes is a leading cause of kidney disease and limb amputation?" Well, now everyone's hand was up, right? We've all heard this. "Wrong!" he said. We sat dumbfounded. "Poorly controlled diabetes is a leading cause of these things." See those first two words? Wow, I had to replay it again in my head. When does any doctor, magazine article or TV ad ever stop to give us the fine print? Pretty much never. So here's the very fine take-away: keep your blood sugars in good control and you're not the people they are talking about when they jabber, jabber diabetes leads to all this stuff. For me, it was a truly enlightening moment and a gift that keeps on giving.
I took one other crucial thing away from Dr. Polonsky's workshop that day. Literally, I took it away. Well it was being given out, I didn't steal it. A little stickie to put on my meter. It shouts "Hey it's just a number!" every time I come near to test. Not vocally of course, but I see it and then hear it in my head like a little mantra. Chances are you know we're not supposed to look at our blood sugar numbers as 'good' or 'bad, (even though they call it testing) or take them as a statement of our worth (hard to do when your meter's screaming 265!). No, we're merely supposed to use our numbers as data, you know feedback for course correction. Well, I have to tell you this little stickie really helps. So here's my advice -- write it on a little piece of something sticky like a label and slap it on your meter. There's a whole lot of mind-shifting power in this 2 cent, primitive, pre-digital tool.