The Importance of the Diabetes Community
This is the second in a series of five pieces that I wrote for Omnipod's Suite D blog. Part three is live on Suite D now and will arrive here next month.
It's a paid freelance gig, you can read my disclaimer about that on part one of the series (link below),
Part 2: Finding Support
My bedroom was pitch black and the house completely silent. It was well after three in the morning and I hadn’t been to sleep. My belief that my daughter Arden’s blood sugar would rise to a safe level was tenuous that evening so I was watching over her even more than usual.
When I fall asleep the likelihood of me waking up when I need to is slim. So on nights like this one I tend to just stay up. This night happened before we became continuous glucose monitor users and I would periodically walk from my room to hers to check her blood sugar. Each time I climbed back into bed, I became a little less certain that I could stay awake. Because my wife was sleeping I was trying to stay still, my eyes were sore from a long day that was getting longer. I had to stop watching television on my laptop, because it felt like there was sand in my eyes. I was exhausted, bleary-eyed and pretty sure that I was about to nod off – so I opened my Twitter app and, perhaps out of desperation to stay awake or maybe in an effort to not fall apart, I told who ever may be out there what was happening.
A few silent minutes later, I received a response from a woman whom I’d never met. She told me that she was also sitting up watching a blood sugar that she didn’t quite trust. That was it really. We didn’t talk much or offer one another solace. It was sort of a, “I’m here doing this thing and it’s getting the best of me.” And a reply that basically said, “Me too.”
I closed my laptop, the abyss of the night enveloped me and I began to sob tears of relief.
I was buoyed by the notion that there was another person in the world that was doing what I was and suddenly everything felt better. I learned that night that it isn’t the diabetes that made me feel alone and it wasn’t the darkness that caused me to want to reach out; I was being oppressed by the feeling that no one understood our life.
And just like that, with a tweet, I found sameness with someone that I couldn’t see, hear or touch. My diabetes community expanded. No longer would I have to wait for a JDRF walk to talk to a person who understood my life. Supportive glances, understanding words and the satiation that sameness brought, they were all I needed to feel recharged. Support came that night, but not in the form of mentorship or advice. This wasn’t a plan for counting carbs or talks of how to best prep a pump site. It was simple, beautiful and kind. A brief encounter with a person who had walked in my shoes and reassured me that I was not alone.
I’ve learned diabetes jargon, gathered information about insulin pumps, medications and ways of handling type 1 diabetes from the diabetes community. They’ve taught me with their openness to be comfortable with others being my rock when I can’t do it for myself. With the help of these wonderful new friends I began to see a light at the end of a tunnel, I was beginning to believe that it was possible for us to find our way back to feeling normal.
Read 'The Importance of the Diabetes Community Series
Part 1: How it Saved Our Family
Part 2: Currently Reading
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.
Helping Children with Diabetes Gain Independence
This is the finale of the series. Links to previous posts are below, if you'd like to read it in order.
I was asked recently on my blog if I had any tips for a family that was considering Arden’s school day diabetes management plan. Anything that I hadn’t mentioned – perhaps a tip that would make the transition smoother. I responded in part by saying, “I didn’t know what I was doing when I started either.” I think that’s the most powerful message of support I could offer anyone. None of us know what to expect when we forge our own way with type 1 diabetes. All we have is the knowledge that we’ve been able to accumulate, but I think that’s a lot.
Consider how little you knew on the day that your child was diagnosed and remember how your doctors only began to scratch the surface when they explained diabetes care. Now, you probably have more diabetes knowledge than three doctors combined. I know that I am the foremost expert on my daughter’s physiology. I can, with great accuracy, predict how her body will react to insulin, exercise, stress and all of the factors that we pay attention to. I didn’t learn these things in school or at a doctor’s office, I learned them by experiencing diabetes – and that’s how our kids are going to learn.*
I want to caution you to not get too comfortable and to always keep a watchful eye as our children take over more and more control of their day-to-day diabetes health considerations. Because even though they are some of the most courageous and levelheaded kids a person will ever meet, they are still kids. I think they want and need to know that we are here. “We” doesn’t have to mean just parents. If you end up trying Arden’s plan in school, please remind the teacher that your child’s diabetes independence doesn’t mean that they don’t need an adult to be concerned and watchful at times. My friend’s new book reminded me recently that sometimes the most responsible children tend to get forgotten and that space can lead to apathy for them. Sometimes the trust is easy to take advantage of, especially if the child is experiencing diabetes burnout. It can happen to anyone and it will, so always remember to be a presence during those formable years.
It’s my sincere wish that this series has helped you to feel powerful and more in control. I hope that something I’ve shared has given you a new perspective and made you feel like the idea of anything being possible isn’t just something you read on an Internet meme. I also want to thank you, because I learned something from writing these pieces. I learned that I was getting too complacent and that we should be taking what we’ve learned from the last year of managing Arden’s diabetes from school and make something new happen.
I’m very excited to share that by the time you read this Arden will have gone to a concert with her best friend and her friend’s mother, without me or my wife in attendance. I’m going to take the things that I’ve learned from Arden’s diabetes management at school and use them to let go a little more. I’m going to use them to give Arden more freedom, so that diabetes can be a smaller part of her life. It may take a lot of self-control not to drive up the interstate behind our friend’s car and sit in the parking lot of the stadium, but I’m going to use the same courage I felt in an e-mail one of you sent me recently. If you can read about what I do and find the strength to try… so can I.
Thank you so much for reading!
My best,
Scott
The Importance of the Diabetes Community
For those of you who are new to Arden's Day...
I do a little freelance writing some times. Once a year I write a series for Insulet, the company that makes the Omnipod insulin pump. It is no secret that when I'm paid to contribute articles the company paying me is hoping that my blog readers will checkout their blog, site, products etc. Hopefully they also like my writing, but I digress.
When I negotiate my writing contracts I always push to be able to repost what I've written here on Arden's Day. There are two reasons for that. 1. I don't want you to feel pressure to visit another site and 2. I don't want to hand in less than my best work in an effort to keep the 'good stuff' for Arden's Day, and for you. This way it's all the 'good stuff' and you can read it where you'd like. Alllllllll that said, this is the first in my five part series on the Diabetes Community. It ran on Insulet's Suite D blog one month ago (I have to wait a month to post here). Part 2 is up now on their blog as well, you can read it on Suite D or wait until next month and I'll repost it on Arden's Day. One last word on this. While I am paid to write for Insulet, it's not nearly as much money as you may be imagining and besides, there is no amount of money that could make me pass information or sentiments to you that are anything less than my 100% real feelings and experiences. This blog, our community and the responsibility that I feel toward you all means too much to me for anything like that to every happen. I just love the Omnipod and am happy to tell people about it. And you know what? Good on Insulet for letting me repost here, they couldn't have been thrilled when I made that request.
Part 1: How it Saved Our Family
When my daughter Arden was diagnosed with type 1 diabetes in 2006, our family was violently thrown into a world that we didn’t understand. The days, weeks and months that followed were full of endless sadness, fear and moments that hindsight would later tell us we could have handled much better.
I’m choosing to share my largest diabetes misstep from that time in our lives, because it led me to what may be the most valuable discovery of my adult life. This is part one of my five-part series about community and how it will save, support, teach, improve and transform your life with diabetes.
I should have sought out other people who understood our struggles, I should have found community. Too many of the decisions I was making were informed by speculation that was fed by an often self-imposed and largely unnecessary fear.
What I needed was support and wisdom, but instead I hid from the world and, in doing so, created a vacuum that was not conducive to living well. Had I found other people living with diabetes sooner, they could have shown me what I now know, but took much too long to discover.
Arden and Kelly at our first JDRF walk, two months after diagnosis.
My first experience meeting other people from the diabetes community was at our local JDRF walk. The walk we attend goes through a park full of winding paths, steep hills and majestic scenery – countless thousands of people all moving forward in love and support of one another.
At some point during the morning Arden needed insulin. We had just stepped off the path so others could pass when I realized that pausing our life to give Arden insulin didn’t seem in any way noteworthy to the people passing by. And then it hit me.
Everyone here has or loves someone who has diabetes. They don’t look scared and their faces don’t reflect the sadness that I feel. We were suddenly and beautifully surrounded by people whose lives weren’t being defined by diabetes. It was right then that I began to believe that diabetes wasn’t always going to permeate every second of our lives.
To this day I believe that the most beneficial aspect of what the JDRF provides is the opportunity to find sameness. If those walks didn’t produce a dime for research, I would still be there each year just to spend a little time around people who understand. Each year when I walk, my greatest hope is that someone who is feeling as I once did will see our faces and think, “I’m not alone. Those people look happy – we can be happy too.”
Community can take many forms and often the support you need can’t wait for a moment that can be found in real life – you may need the community to come to you. Luckily, the diabetes community is one of the most well-represented patient communities online. There are so many different ways to find kind, helpful and present people who would love nothing more than to help you believe that living well with diabetes is a tangible goal. These people have walked the path that you are on – they know the shortcuts. They write blogs, take the time to lend an ear on forums and give their best advice on Facebook pages. You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!
Read 'The Importance of the Diabetes Community' Series
Part 1: Currently Reading
Part 2: Finding Support
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.
The Marathon Runner Who Jumps Over All Hurdles
We all get knocked down from time to time -- that's just life. Robin Arzon has perhaps experienced this more times than could be considered her fair share. The story of her life reads like the written account of a heavyweight boxing match that won't end -- because nothing keeps Robin down for very long.
The daughter of immigrant parents, Robin originally planned to follow in her father's footsteps and become an attorney. She chose to get her undergraduate degree at NYU's Gallatin School of Individualized Study. Robin didn't take the course load that one may expect of a prelaw student, opting instead to take her father's advice, "You will learn how to be a lawyer in law school, take the classes you want to take."
About a year before she would graduate from Gallatin, Robin met a couple of friends at Bar Veloce in New York's East Village. A casual, fun night out with friends soon turned into a life-altering experience that would propel Robin to a new direction, years later. That night a ranting man armed with three hand guns, a sword, kerosene, a lighter and the desire to "choose when he dies" was out on the street exacting his plan to die in a fire while killing as many people as he could. The gunman approached and shot a man on the street. The wounded man took refuge in the closest place he could find, Bar Veloce, and the gunman followed him into the business. Upon entering the bar the gunman forced all of the patrons, Robin included, into the back where he huddled them together and soaked them in kerosene.
Early on in the confrontation the man spoke of wanting to talk to the police, and Robin served as his line to the police while being held as a human shield. Afraid but not wanting to give up, Robin spent that time trying to talk to the man in the hopes of ending the nightmare. When the police arrived Robin was being held by the madman by her hair, still soaked in kerosene, with a gun and a lighter being held to her head. Two patrons tried to jump the man as he held Robin; one was shot but the commotion of the struggle was enough to allow the police to storm the room and subdue that man.
This harrowing experience took a toll on Robin, but she got back up, graduated, went to law school at Villanova and practiced for seven years at a prestigious firm before making her next decision that flew in the face of conventional wisdom.
It was during law school that Robin found, very much by mistake, her passion for running and fell in love with it. She describes that in the years after much of her time in the law office was spent "counting down the minutes" until she could go for a run. This is all from someone who was made fun of on the playground for how she ran and who was forging notes as a teenager to get out of gym class. Robin then made a choice that not many could, she quit her safe life, one that she worked very hard for, to follow what her heart was saying.
Initially Robin worked at being a freelance sports journalist and had "no idea what I was doing." Robin started a blog, interviewed Olympic athletes with her cracked iPhone and surrounded herself with like-minded people -- kindred spirits who love to sweat.
Robin realized that if you put the work in, you can become whatever you want to be. Robin created a new life as an "Ambassador of Sweat" -- becoming a running coach, cycling instructor and ultramarathoner.
A believer in her mother's words that she is from "resilient stock," Robin says, "Resilience and willpower can seem finite but they can be recharged." Those theories would be tested last year when Robin was diagnosed with Type 1 diabetes at the age of 32.
Robin thought she was jet lagged after returning from India with her mother and sister. Her mother, who is a physician, was worried that her symptoms could mean something more and she sent Robin to have blood work. Two days later she had an endocrinologist and was taking insulin to manage her blood glucose. Robin's first thought wasn't why me or what next. Robin isn't the type of person to worry about obstacles, all she wanted to know from her doctor is what tools she would need to be healthy with Type 1 diabetes while being able to continue her life as an athlete. Her doctor put her on an OmniPod insulin pump just days after her diagnosis because of its tubeless design and a Dexcom continuous glucose monitor so she could watch her glucose values in real time.
My story on Robin also ran on Huffington Post Healthy Living and has been picked up by Yahoo and AOL. Thank you for all of the great support!
Robin made good use of both tools recently when she finished the New York City Marathon, her fourth marathon with Type 1 diabetes. The NYC Marathon was the first marathon she ever ran, four years ago, and now she says Type 1 diabetes has made her stronger because it has made her more determined to accomplish her goals.
"I really believe we need to trust our struggles," says Robin. "It can be hard to find reason and rationality in a disease like diabetes when you think your body should be doing what it's meant to do but it doesn't. Trust your struggle. There's always light through the cracks. Find inspiration online, from friends and family, from the community, and it will reinforce your power."
Kids and sports: Head injury concerns
Originally appeared on my Huffington Post blog, January 2014.
Having a Son Has Ruined Football for Me
I grew up just outside of Philadelphia; my formative years coincided with a time in Philadelphia Eagles football that is known simply as 'The Buddy Ryan Era.' The defense and mindset that Coach Ryan brought to the Eagles formed how I think about football and my opinion of how it should be played. The 'defense first, hit harder then them' edict that Ryan put into practice was so exhilarating to watch that I could spend an entire Sunday preparing for and watching an Eagles game and not care if they lost 10 to 7.
I never once thought of those games as boring, and it never occurred to me that my team should focus more on the offensive side of the ball. Even though those Eagles had one of the most electrifying quarterbacks that I had ever seen in Randall Cunningham, I just didn't care if they scored. The offense would go three and out more times in a season than I could count, they couldn't win very much and I am hard-pressed to remember many names that played on that side of the ball, with the exception of Cunningham. The Eagle's defense, in contrast, punished opposing players. Men like Wes Hopkins and Andre Waters patrolled as safeties in a way that made the players on the other team quake. Entire games would go by without a pass attempt over the middle of the field, because no one wanted to get hit by Wes and Andre. At the risk of sounding like an old man, I want people who grew up watching football over the last decade or so to know they aren't watching football -- at least not the football I grew up with. You are watching millionaires play catch.
If you don't believe me, ask Troy Aikman how his shoulder feels, mention the name 'Clyde Simmons' to him as you do and see if he doesn't look just a bit scared, still, to this day. I witnessed Clyde chase poor Troy, flushing him out to his right, Clyde hit Troy in his left side, wrapped him up and drove his body into the hard surface with the full force of his massive frame following right behind. If I remember correctly, Troy separated his shoulder that day and if my memory serves further, Clyde didn't check to see if Aikman was okay or offer him a hand-up -- Clyde screamed at Troy, pointed and walked away pleased that he had done his job. It was like watching a war; there was no mercy and no regard for anyone who wasn't on your side. Ask Ernest Givens how he got his nose broken, ask every offensive lineman that Reggie White literally lifted, one-armed, and threw aside like a paper doll on his way to the then NFL sack record. My point is, I grew up watching violent, punishing football, and I loved it.
That is why I was surprised to hear the following words come out of my mouth when my 7-year-old son Cole was invited to play on a football team: "That's very nice of you to ask, thank you for thinking of him... but Cole isn't allowed to play football." When the father who coached the team asked why I refused, I, only partially joking, asked him if he would be comfortable with his son coming to my house to play if I said that the boys were going to go into our backyard, get a running start and run as fast as they can into my house. "Don't worry," I told him, "I'll give them a plastic helmet to wear."
Before that moment, I never once considered if I would be comfortable with my son playing football. He was -- and still is -- a committed baseball player, and I never imagined I would need to have an opinion. It just never came up. The boy in me who was raised on Buddy Ryan football was shocked to hear himself not just say no, but to have such a protective and visceral response. It was a confusing moment; my ego and pride were alive with the notion that someone thought my son would be a good football player, but the idea of him banging his head into other people terrified me. That was many years ago, before I had ever heard the words 'chronic traumatic encephalopathy' (CTE). To be perfectly honest, at that time, I'd never heard of an NFL player taking their own life and never once did I wonder about what happens to the men who play football, after they leave my television screen.
As Cole has grown, I have gotten more inquiries. One very kind man approaches me twice a year to ask if Cole will come play Quarterback for his rather competitive team. I wish that I could say yes. The kid in me who watched the Eagles growing up wants Cole to play and the part of me that is proud of my son hates holding him back, but the father in me wins this argument every time with one simple thought, "My kid need his brain, I can't take that risk."
Andre Waters took his own life in 2006, only four months after the first time someone asked me if my son wanted to play football. I loved watching that man play football, and now he is dead. Pathology reports indicated that Water's brain tissue was that of what would be expected in an "85-year-old man" and that it had characteristics of a person in the early stages of Alzheimer's Disease. Waters was 44 years old when he died of a self-inflicted gunshot wound. Dr. Bennet Omalu said at the time of his death that if Andre had lived for another 10 to 15 years, he would have been, "fully incapacitated." That news when I read it on ESPN, made me sad for every time that I cheered him on. I felt complicit in his death and my love for football has been waning ever since.
I didn't watch one game last season after I listened to Malcolm Gladwell deliver a speech to the University of Pennsylvania about CTE. Mr. Gladwell showed a great resolve when he brought his feelings about CTE directly to a school that lost a player,Owen Thomas, to an allegedly CTE-related suicide. I walked away from that speech knowing that I shouldn't be part of anyone else getting hurt, even if I was just watching.
I can't imagine that I would have experienced such a moving response to the news of these men and their deaths if I were not a parent. I began periodically watching NFL football again this year after deciding that my opinion, no matter how well-intended, cannot and should not interfere with the will of another person. The men that play professional football are adults and they can decide how much risk they are willing to absorb in an effort to experience the rewards of playing. I would be lying if I didn't admit to being greatly conflicted on this issue. I do love watching football, but I don't respect myself as I sit down to take in a game.
What I can do with a clear conscience is stop supporting with my dollar or my backing any form of football that is played by a child or young adult who can't cognitively process the danger they incur with thoughtfulness to the long-term risk possibilities. Children can't and shouldn't be expected to have foresight on topics such as this, especially when the allure is so grand -- hell, I can't even stop watching on Sunday. I'm quite certain that my little stand isn't going to make a dent in the popularity of American football, and it isn't my intention to talk you out of watching or in any way infer that parents who let their children play are wrong to do so.
I am completely aware that football has helped instill lessons about teamwork and perseverance in millions of young people, most of whom will not develop CTE. This article is not a judgment or condemnation of any parent's decision; I only wanted to share how being a parent has changed the way that I look at this game, a game that I loved with all of my heart for most of life.
The memory of the men whose lives have been altered by football-related injuries haunt me as I watch. I'm genuinely interested in seeing where the future takes me. I wonder if I'll be able to break free of the amazing memories that I have of the warriors that played defense in Philadelphia when I was a boy, to follow my conscience and stop watching football. At the moment, the exhilaration of the game is winning out, a fact that I am not proud to admit and will think about as I watch the big game on Sunday.