Tuesday, November 24, 2009

Lean On Me – InsunlINdependent Family

I have one of the most amazing support networks anyone could ever hope for. My parents amazingly came to every football game I ever played in, have traveled all over the country for my triathlons and often dress my dog in a Ring The Bolus t-shirt, my younger sister cheers me on like no other, makes sure she handles my parents nerves on race day so I can focus on the race and is there for me no matter what. My close friends who I have let into my soul are incredible and I know each of them would gladly give their right arm for me. As much as they support me, they will never know what it means to be a diabetic athlete. They support me, they love me and they cheer my triumphs, they seek to learn as much as they can about the challenges I face and while my "type 3" friends and family (people who care for people with type 1 but have working islet cells!) give me the strength to face the challenges I do, they only know what I experience through my words.

This weekend I went to Ironman Arizona not sure what to expect. I woke up at 4:45 am on Friday slightly hung over and totally exhausted to drive to Richmond Airport for a flight to Phoenix. On my solo journey across the country I was going to meet a group of people of whom I had only spoken to two on the phone. One of those people, Anne Findlay, was one of my biggest supporters in the early days of my diagnosis leading up to IMLP that I couldn't wait to cheer her on for her fourth Ironman finish! At the same time I've always been kind of nervous about throwing myself out there, going into a situation where I essentially no, no one and have no control over how the situation would transpire. When I landed in Phoenix on Friday I had no clue who I would be hanging out with that night or what the weekend had in store for me.

By the time I left Phoenix on Monday at 1 pm I left with a huge smile on my face, and my heart filled with the incredible journeys I witnessed at Ironman Arizona and the comfort I felt by being surrounded by other type 1 diabetic athletes for an entire weekend. Having to manage my blood sugars has never really bothered me although I'm never like, AWESOME time for another finger prick or carbohydrate calculation. Without question juvenile diabetes is a life changing illness and while I've never asked "why me," I do understand it is a pretty big hurdle to overcome to accomplish my athletic and life goals. Having the opportunity to be surrounded by other people who face the same challenges was one of the most amazing experiences of my life.

The first night there I went to In n Out with a group of people I had never spoken with before; five of the seven people eating those delicious burgers had to test their blood sugars and bolus up before eating. The only other time I have ever eaten with another type 1 was a week or two after I was first diagnosed and had dinner with my friend's wife who was helping me decide if the pump was right for me. There was something so comforting laughing with other JDs as we tried to figure out how many carbohydrates were in a double-double at In n Out.

As the weekend progressed I laughed at how similar all of our actions were. God only knows how many test strips this group went through during the weekend. Although each of us manage the disease in an individual way we were all connected through the desire to help others manage their disease and the desire to revolution how the disease is managed. On Saturday I had the privilege to view the Triabetes Documentary, much like a 21 year old girl drinking too many cucumber margaritas while watching Steel Magnolias, I balled my eyes out (although I tried to not let anyone notice!). Here I was sitting in a theater with even more people I had never met before and couldn't help snot bubbles from forming and tears streaming down my cheeks. There were a few moments in the documentary that touched my soul – the documentary followed the journey the original Triabetes captains took while training for Ironman Wisconsin in 2008 and their Triabuddies, kids with diabetes under 18.

During the early part of the documentary one Triabuddy broke down in tears when she said "I don't want to do this anymore, I just want to be normal." That statement had tears running down my face, later in the film Brian from Buffalo, NY stated, "everytime we go out to race or train we face the risk of a low," yes Brian I've been there and done that! Dave, who has a blog titled Lowboy talked about how Triabetes transformed his life going from someone who hadn't tested in years to someone who now has an A1c below 7! And what really got me was when a brother of one of the Triabetes captains talked about how proud he was of his brother for challenging himself the way he does, the pride he had in him and how deeply his brother's diabetes had affected him. That had me crying a river as I thought about my family, friends and especially younger sister as I know they all feel the same way.

With each passing moment I began to feel closer to my fellow Triabeates teammates, people who I had never spoken with before were quickly becoming my friends. To look into someone's eyes and know they have experienced the same fears, frustrations, failures and triumphs that you have was an incredible feeling. There was an unspoken instant support in each handshake and each hug. With each parent of a triabuddy I met there was a silent thank you for the example we all set for their children. With each story about training there was a common bond. And when I finally met Anne Findlay, one of my biggest supporters whom I never met but called me after Ironman Lake Placid, who helped me understand how to train and manage blood sugars and who provided so much guidance, there was a huge hug and a thank you for all she helped me with.

On race day I could barely contain my emotions as I cheered each of the 16 triabetes members on during Ironman Arizona. I didn't have the opportunity to talk a ton with the athletes prior to the race since they were off doing pre-Ironman off your feet stuff. Heck, I couldn't even remember most of their names as they passed by in their Triabetes race kits. But that didn't matter, with each pump clipped to a fuel belt, with each finger prick, with each foot strike, I knew what they were going through. When one member stopped at Triabetes HQ for some extra food because he was going low, I knew what he felt. When each member reached transition and tested again in the changing tent, I knew what worry was on their mind. When each member ran with a smile on their face I knew it was because for a day the disease was not preventing them from doing what only a small portion of the population will ever attempt.

Over the course of the weekend I had the opportunity to meet some incredible people. I heard stories of how frustrated some people were during their teen years with diabetes. I shared test strips with someone who hadn't brought enough on race day. We compared how different foods affect our blood sugars and I found out I may in fact be the most neurotic diabetic on the planet. When fellow diabetic triathletes think you're a geek for having such an in-depth nutrition plan you may in fact truly live up to the nickname of Supernerd. I spent most of race day with three diabetics, Julie, Steven and Ryan. Julie and Steve were both awesome and each was a bit older than me but became instant friends. I constantly mocked Julie for the fact that her and her husband went to Ohio State undergrad but Michigan for grad school while Steve and I shared a deep bond of having been diagnosed about 2 years ago and doing an Ironman shortly after diagnosis (he had done an IM prior to diagnosis as well.) But Ryan was one of the most special people I met all weekend. Ryan is a 10 year old juvenile diabetic from California and was Steve's triabuddy for IMWI in '08. In a few months in Carlsbad this 10 year old will attempt a freaking half marathon, he also is a pretty sweet baseball and basketball player. Beyond the athletics thought he kid was amazing, I never heard him complain about testing, and he was as curious about me as I was about him.

During the dinner on race day the 4 diabetics, and 3 incredible type 3s went to a Mexican restaurant for dinner. I cranked my pump up to bolus for 95 units of carbs and Ryan asked with a giggle "how'd you get that number?" With his parents intently listening in I explained to him how I calculated for 20 grams of carbs in the piece of cornbread, the carbs in the side salad (about 10) and the 80 grams of carbs with my meal, then how I gave a slight discount because of the alchohol in the margarita I was drinking. Ryan laughed then went onto munching on his French fries, then asked me what I eat for breakfast. I told him about chia seeds, Odawala superfood and fruit, he then told his Mom he wanted a breakfast shake with cheerios, milk, syrup and bananas! There was just something really special being around a kid who didn't care that he had diabetes and was just going about his day without a care in the world; I've never been around a type 1 under 20 before and this was a pretty incredible experience, can't really put it into words but the conversations I had with his parents were amazing and Ryan was great – I can't wait to see them again while I'm in Oceanside in March.

Although I've never felt alone in my triathlon journey I did feel like I found my colony of bees like the girl in the Blind Mellon No Rain video. As I watched the Triabetes captains cross the finish line I knew that on this journey to the finish line in CDA there were so many others who face the same things I do. Each story that ran past me brought a new meaning to what it means to be diabetic. I went into this weekend thinking I would network with some people, hand out some business cards and become more involved with Triabetes. I left this weekend having my heart and soul touched, connecting with people on an incredibly deep level with a sense of pride and excitement for what I am now a part of. I left my apprehension about meeting that many new people at the airport and from the first handshake let myself out there. I left Arizona knowing that we all have someone to lean on and that in this battle against lows and highs there are others challenging themselves as much as I do, on my flight back I realized that my support network, the people I care about and the people who care about me got a whole lot bigger – I realized that we all really might be able to revolutionize how people look at this disease. Getting to Arizona was one of the most incredible experiences of my life and the smile still hasn't left my face.


Gary said...

I had the awesome opportunity to run the Ragnar Relay Del Sol with a lot of the ID/Triabetes gang this past Feb (Peter, Jerry, Bill, Kevin, David, Denise, etc) and I was in the same position. Flew out to PHX and didn't know anybody, but the instant bound that is formed is just amazing. Sitting around the dinner table with 12 other T1 athletes is so cool.

Thanks for sharing this story!

richard said...

+was truly written from your hart i have never been so proud to call you my son DAD

Anne said...

Ed, I was so happy you decided to come and was so pleased to finally meet you in person. Thank you for sticking it out to the end--I know you understand the challenge of an IM and it meant a lot to have you there. Thank you for writing up this heart-felt post--it captures so well what makes Triabetes so meaningful to so many of us.


jpnairn said...

Ed, Thanks for sharing your perspective from this past weekend. It was fantastic.
I'm sorry I missed this opportunity to meet you, but I'll be out in Carlsbad in January.

Amanda said...

wow. thanks for sharing :)

Sean said...

Ed, terrific to meet you on Saturday and see you on the course Sunday. We're honored to have you and all the others as members of this unique fraternity we all share.

Ryan said...

So here it is:

I'm pretty much a self absorbed dick. Alright not really, I just play one in real life outside the house because it keeps the "weirdos" away.

I spend A LOT of time training, and as you know sometimes the mind wanders searching for motivation to keep pushing beyond the comfort zones. I need that. I get complacent that I am fortunate in that for right now...everything works. I can get out of bed and go run x distance without needing to strap on a prosthetic leg or check my blood sugar...I just go.

So you should just know (and don't tell all your anyone or I'll just deny it and call you gay) that you, and people like you, who do the same thing that I do, and have to work so much harder...are inspirational.

Can't wait to meet you one day at a race and I'll let you pat me on the ass for saying that.

I'm a native Southern Californian and the mention of In-n-out Double Double really made me homesick.

denise said...

It's a year since I've met all my Triabetic friends, and I'm still smiling too! Glad to see we are getting some more East coasters

Blair said...

Ed, This is so well written. You did such an amazing job putting into words what many of us feel because we are involved with Insulindependence and Triabetes. Thank you and good luck in all of your upcoming races!