juvenile diabetes Archives -

Paradigm shift

By MainAdmin on July 30, 2013 in LivingVertical

I haven’t blogged in a while. Some of you may not have noticed, while still others may be thankful for a vacation from my self indulgent, esoteric ramblings. The reality is that I have been feeling very uninspired. This may sound like heresy coming from a person who voluntarily has very little on their resume besides “tries to inspire others”. I struggle with feelings of inadequacy and even guilt-how can I be trying to give others something that I don’t possess myself? Isn’t this hypocrisy?

Seeking some light in dark places with wonderful people, Lee and Alan.

I worry about continuing LivingVertical-every day is spent corresponding, reaching out for support, ordering merchandise, working on the documentary, trying to find investors for it, venues that want to screen it…my thought is only to the future which I can’t see-and it looks like all of the work and sacrifice that led me to this point has just been a false start, with no real “legs”.

Reflections.

As I wallow in worry, frustration and self pity, I realize that in several days, the culmination of two years of blood, sweat and tears will be upon me and that I am at my lowest personal ebb over the last several years, and I have friends and supporters who see a much better person in me than I see when I look in the mirror, converging upon Springdale UT to see what I have been building. I don’t want to disappoint them-but I dig deep within myself and feel empty and hopeless.

This weekend is also the SweetestSummit Diabetes Family Adventure Weekend, my first opportunity to run a guided program for the diabetes community, in my own back yard, in the cliffs and canyons that inspired me to take on Project365. Families begin to arrive and I am sorting out logistics. Who is staying where, what time are we meeting in the morning, what gear do we need, is it ok to bring a DSLR camera out with us, what sort of snacks should we bring, how much water do we need…and on and on. I put out as many fires as I can and go to bed. Tomorrow is Day one of camp and I’ll need to maximize the 4 hours of sleep I can get between now and the alarm.

me and some of the girls, Kaia, Grace and Zoe.

Day one goes well in that the kids all become instant friends and are obviously enjoying themselves and the climbing we are doing.

I am trying to balance fun with technical instruction because we need the kids to be proficient in rappelling so that we can descend a technical slot canyon on the final day of camp. I am learning a great deal about how parents manage their kids diabetes-and I am wondering how I can step into this mix and offer a means to help the parents give more responsibility to their kids-and more freedom.

But what can I possibly have to say to these parents? I don’t have kids-let alone a child with diabetes. I don’t know what it’s like to fret and worry over someone else’s life as it develops around a complicated medical condition. Sure, I have diabetes, but that’s easy to deal with since it’s mine and no one else’s. It’s become second nature to me-but that won’t help anyone else but me.

Day two, we are hiking in the Narrows of the Virgin River in Zion. We are surrounded by looming and magnificent walls of the worlds largest slot canyon and the kids seem impervious to their surroundings-they are just being free, having fun, splashing around in the water without a care in the world.

I stand back again, watching the parents taking ownership of their kids diabetes, reminding them to test, even testing for them. I want to say something, but I just don’t know what to say or how. Everyone is having a blast-why ruin it? Lets just have some fun and that’ll be that.

Day three, our final day together, I have collected my thoughts and I am ready to issue a challenge to the group. I have found the words and I know that after two days of growth together, we are at a good place to push the envelope. I have seen moments of brilliance and initiative from the kids and I want to find a way to help that grow. I need them to step up and do more for themselves:

We have all had a great deal of fun and enjoyed playing together and seeing some spectacular things that are unique in the natural world. But if we leave this camp with only “fun” to show for our time, then we have missed something really important. We are here to challenge ourselves and our notions of diabetes-and to really explore how it impacts our relationships. Parents: I want you to think about how you can step back and give your kids more freedom and responsibility in their management of diabetes. Kids, I want you to think about how you can take control of your own diabetes rather than relying on your parents.

I can’t tell if I have just ruined the weekend by issuing such a challenge or if I have actually succeeded. Time will tell, so we gather our gear and head out to the trailhead from which we will approach the canyon. As we arrive at the trailhead, I explain that my plan for the day is for our group to separate-Stefanie and I will take the kids via one route while Rob will take the parents via another one. We will meet up later in the day, I assure everyone. Parents look as though I have just given them the news of a sickly relative having just passed away. They knew I was going to ask this of them at some point and that time was now. I want to get moving before the parents change their mind or begin to worry, so I begin packing my gear.

As I am packing, one of the parents, Jason, the same T1 climber who I climbed with on the final day of Project365, takes me aside to speak about his daughter, Kaia, who also has T1. He expresses deep concern and discomfort with the idea of letting Kaia be responsible for her own management, even for several hours, given the fact that we are in a technical environment where a lapse in blood sugar management could have much higher consequences than a school day for example. Jason is an informed customer, with an understanding of the risk factors for diabetes and climbing and rappelling. Part of me feels like I should just say “Ok, fine, lets just put everyone together”.

I know that if I back down, we can still have a fun day out. But I want more than fun for these families. We must push beyond that point of pure fun if we want growth to happen. I weigh my options and I try to assuage Jason’s concerns, point by point. I am surprised that I have reasonable solutions for each point-and I am starting to think that maybe I have more to offer these kids than I had initially thought.

I am watching the struggle play out on Jason’s face as he talks to me. I know it’s not about me. I know he trusts me and thinks I’m competent-but that doesnt make it easier. The struggle is in the heart, not the mind. Letting go is war. In a split second, I see Jason’s demeanor change. He has chosen to step back and give Kaia an opportunity to take control-by relinquishing his own control. I want to start blubbing like a child and give Jason a hug because I just saw him take on a monumental challenge and vanquish it. I am so proud of him.

But I can’t celebrate yet. I have to make sure that I am on top of the kids safety and blood sugar management. We start off down the trail leaving the parents to go their own way. Stefanie and Nick come with us and the children lead us, exploring and planning how they will face the obstacles ahead.

We stop and check BGs together. The kids share strategies for how they are managing their sugar. Their siblings are along with them and they are answering my questions too-I am beginning to see that there is SO MUCH depth in these kids. Kaia goes out of her way to reassure me that she knows what she is doing-and why-and lists anticipated problems and solutions as we are getting situated near our first rappel.

As we begin the technical part of our day (ropes, carabiners, harnesses, cliffs etc) I ask Grace, the first camper to descend our first rappel to hook herself up. I don’t remind her of what she learned two days prior. I watch her struggle. I want to give her a chance to problem solve, not steal that victory from her by simply fixing the problem myself. She sorts out her setup like a champ and off she goes.

In fact, every single one of the kids has their rappelling setups dialed. I don’t even have to remind ONE of them to lock a carabiner or anything, throughout the day.

Towards the end of the day, when the parents met us at the exit of the canyon, I watch Kaia interacting with Jason. I am still on rappel and I look down at them as they stand together on the ground-Jason wants to help her bolus for her meal but she waves him off and assures him that she has it under control.

We head back to Springdale for the Project365 premier and I am no longer thinking about the edits I have to make before this rough cut can become the final cut. I am not thinking about the fact that I still have no backers to help fund the movie. I don’t care that we had to borrow the gear to make this camp happen or that my apartment is filling up with boxes because I have no place to store the camp gear other than my sofa. I am not worried about whether or not people will like the movie when we show it-I am not concerned about having money to pay rent in the next several months.

Everything in my world changed. I saw the most amazing things happen-people with diabetes finding incredible strength and self reliance in themselves at 8 years old, in high risk environments-being responsible and managing risk and not being limited by diabetes. I saw the parents push themselves in huge ways as they chose to step back and trust us-and their kids.

When we got back to town, the premier was an absolute riot-we packed out Deep Creek Coffee with more people than the owners, Scott and Heidi had seen there previously. Everyone who spoke to me said they loved the movie-many asked then and there to buy a copy. No one seemed to notice that it was just a rough cut. People were really excited and inspired.

I began to realize that I found my way to this point by following my heart, not by trying to make money. If the companies want to support the movie, then great. If they don’t then I’m not going to worry about that. I know that the message is there-and that the message of changing lives and empowering people with diabetes is the most important thing in my life. I am proud to be scrappy and hungry-and as we reflected on the weekend with our friends Lee and Alan (my former clients when I used to guide for Zion Adventure Company who traveled to Utah from Scotland to be part of the camp weekend and the film premier) it felt amazing to know that this moment was OURS. We did this on our own with grassroots support from people who care-not because we have a big budget. It was pure, it was beautiful and lives were changed-at least one, speaking for myself.

I am infinitely grateful for the support of Stefanie, Nick and Rob who were amazing guides, facilitators and photographers-they gave their time freely, and applied their expertise gladly. Special thanks to Deep Creek Coffee who fed us and hosted the premier-wonderfully, I might add. Zion Adventure Co helped us in many ways in terms of coordinating logistics and gear-specifically Bill “Sweet William” Dunn and Shelley Buckingham who went above and beyond to make sure we had the tools needed to be safe and have fun. Imlay Canyon Gear donated a lot of gear to us that made our adventures possible and that will continue to facilitate future adventures.

To all the parents who came out-thank you-there is no greater gift or compliment than trusting your children to us as guides in technical environments. We are in your debt. To all the friends who came out to see the film and support our work, we thank you and we love you.

Watch it, share it!

By MainAdmin on July 13, 2013 in LivingVertical

This is our video submission for the Insulindependence Athletic Achievement Award-we are honored to be in the running to win 5,000 dollars that we really need to get the Project365 documentary completed. Every view this video gets counts as a vote-you can watch multiple times from multiple IP addresses.

Your vote, your time COUNTS! Thank you for getting us this far!

Nothing to see here folks, move along!

By MainAdmin on June 30, 2013 in film, project 365

I have a lot going on over the next several weeks, so I want to make sure everyone is in the loop. I am heading to California for some training in sub 100 degree weather for the next week-Kilimanjaro is about 2 months away and I want to be ready!

Meanwhile, we are going to be launching a whole new website (quite beautiful!) thanks to MesaMedia.co and once that goes live you will be able to see the new Project 365 trailer I have been working on. And speaking of the Project365 film, I finished the rough cut and have been screening it with select critics and so far much of the feedback has been very positive-based on that, I am confident in inviting you to Springdale UT on July 28th for our screening of this rough cut at Deep Creek Coffee!

We are going have giveaways, prizes (possibly a raffle or three) and t-shirts and hats for sale. Also…there will be great food and you will get to be among the first to see the Project365 film!

Following this showing of the rough cut at Deep Creek, the video won’t be seen until the final cut is finished and we begin presenting it around North America during the fall tour! So if you have a venue near you that might be interested in hosting a viewing of our film, drop us a note! Following the tour (fall/winter 2013/14) the film will be available to stream (or download for a fee) right here!

Meanwhile, we have new projects to unveil, an online store coming soon where you can buy photo prints and other merchandise, and I will be attempting to summit the highest mountain on the African continent and share that experience with you for the sake of diabetes empowerment-right here through a series of short films.

I am so thankful and excited to have the support of so many wonderful people as LivingVertical turns the corner and begins moving past Project365 and really starts to grow!

Adversity: the greatest teacher

By MainAdmin on June 23, 2013 in LivingVertical

I’d been up devils tower before; twice. The first time in 2009 was a long day, but at that time, I was new to climbing and setting a tedious pace was to be expected. Just prior to Project 365 in 2011 I summitted the tower for a second time with a good friend during a casual morning of climbing. It was encouraging to see tangible progress in my climbing. But that was two years ago.

My first trip up Devils Tower in 2009.

This past week I was shooting for my third time up, this time with Martin and Stefanie and nothing felt right. I was tired. My sugar was constantly dropping and I felt panic whispering in my ear. To make things worse, a lightning storm blew in out of nowhere. It was a culmination of all the scenarios that had individually lurked in the dark corners of my mind. We made a difficult decision to bail off and as the wind started to shriek and the lightning crackled in the ever-closing distance, I couldn’t help thinking about the fact that “a little lightning” could easily turn a fun afternoon into a body recovery mission.

No big deal-just “a little lightning”!

Back on the ground I realized that we made the right decision. This was risk management. Anticipating and reacting. The fact that the wrong decision exists in conjunction with the right one makes for close calls, but the awareness and attention to detail will always separate the two.

Martin and I discussing route finding and various scenarios we could encounter-and ways to escape in emergencies.

But this was only the beginning of risk management for me. Martin and I agreed to take a rest day (a luxury after Project 365!) and during that time I decided to make some alterations to my insulin regimen to hopefully straighten out my lows that I had experienced earlier. They say you should never make changes on race day, but I was never a good runner-so I decided to try decreasing my basal insulin so that I would have “room” to take some fast acting insulin and smooth out post-mealtime highs.

After a rest day off, I was ready enough to try things out on the wall on our final day at Devils Tower. That night as I was trying to get to sleep though, I had a very fast moving hypo episode that came out of nowhere. I didn’t even feel it coming, which is unheard of for me-fortunately my CGM alerted me and I started pounding candy which allowed me to put the brakes on it. I had only taken a tiny amount of insulin to correct a high from earlier in the evening. I hadn’t experienced that sort of super rapid hypo in many many years-and the last time that had happened, I was able to look back and deconstruct the various things I had done wrong-and learn from it. This time though, I had no idea what I had done wrong.

Not all the biggest challenges take place in the vertical world. In diabetes, risk management continues long after the ropes are coiled.

It was like my entire diabetes playbook had been thrown out the window. I was rendered a complete beginner, a victim of whatever diabetes decided to do to me. How had I let this happen? I was supposed to wake up the next morning and summit, and now…it seemed like the very idea of climbing was asking for trouble. Suddenly all of my rhetoric about being empowered turned to sand in my mouth. I was helpless, pinned down and a victim. Despair quickly followed the fear and I went to sleep hoping that I would wake up and it would all just be a dream.

Nope.

I woke up in the morning and I realized I had a decision to make. I realized that just like the fast moving lightning storm from earlier in the week, I had come close to another bad outcome, but I had acted and been able to change the result. I wasn’t a victim just because I had a bad low. I was tired and pissed off, but the reality was that I had been able to respond and deal with the challenges that had been thrown at me. I had been tested in big ways-ways that I had thought about and worried about for years, but never really experienced. Suddenly I felt strong. The challenge was still there, but I was able to face it because I knew I could do it. Better yet, I wasn’t alone-Martin was bringing his diabetes up Devils Tower too, and together we had a lot of resources to face challenges.

Martin and I negotiating the approach to our route, (Soler 5.9) via 4th class slabs on the southeast shoulder of Devils Tower

That morning when I met Martin and told him about the previous nights ordeal, he smiled and said “Right, well you have to expect that if you’re trying a new regimen, there will be some bumps along the way!”

He was totally right-and I had not cut myself any slack or left room for that learning curve. So I skewed toward the high side that morning as Martin and I set out on our final summit attempt. My blood sugars were hovering right around 300 for much of the morning. Ordinarily I would be really unhappy with those readings but I felt good and I just kept drinking water and focusing on the climbing.

staying focused!

And the climbing…well that part was superb.

look closely…this is the beginning of the first pitch from the ground…zoomed in a bit.

Not letting diabetes keep us down!

Martin and I moved quickly and efficiently. Knowing that Martin knew exactly what I was dealing with made me feel much more confident and willing to push myself. We had been tested together, as a team and come out of the ordeals stronger.

Beautiful pitches of cracks that go on and on…and on.

Martin at the belay.

Martin climbing pitch 2, laying it back!

We summited shortly after noon on a harder route than we had tried the first day! We were the first recorded team of Type 1 climbers to summit Devils Tower together via this route (Soler)-to the best of our knowledge-and that of Google.

The final 4th class route to the summit.

The solitary, nondescript summit of Devils Tower-under the boots of Team LivingVertical!

When we returned to the ground, the trip was basically over.

The summit is only halfway. To be fair, achieving the summit is optional. Getting back to the ground is not.

Our descent from slightly farther away…

There were a lot of people who were excited to see and hear about our take on diabetes empowerment!

Tools for diabetes risk management.

Time to go back home and get back to work. Website renovations, the documentary, training for Kilimanjaro, SweetestSummit camp all while figuring out how we are going to pay the bills-but this was another life changing, eye-opener. Sending summits as part of a T1D Team…there’s nothing like it. Sure, there is the individual accomplishment, but that pales in comparison to the bond of the rope and the partnership we can share in embracing challenge-in and out of the vertical world as people with diabetes!

Team LV 1-diabetes 0.

Special thanks to Stefanie for taking the climbing photos for us while we were on the wall! Frank Sanders of Devils Tower lodge provided us with a free place to camp, and Hans and Lilo Fuhrer- Martins parents- provided us with post-climbing refreshment, entertainment, and stories of their decades in the mountains! We couldn’t have done it without you all-thank you!

Diabetes and climbing in…

By MainAdmin on June 13, 2013 in LivingVertical

One of the first things thoughts I had when I completed my 365th consecutive day of climbing, and Project365 was ‘what next?’ I actually had a great deal of anxiety in the weeks following, trying to figure out what I should do to build on what I had accomplished. In the next several months I will be revealing several ways that LivingVertical will grow-and what it has to offer the community.

But the most immediate news is that of my involvement with an expedition of 10 climbers, all of whom share the common bond of Type 1 Diabetes and the intent of summiting Mt Kilimanjaro together this September! This expedition itself is called, T1D Expedition-Going Beyond Together and is not a LivingVertical undertaking-it is actually sponsored by the World Diabetes Tour (WDT) in partnership with Sanofi-Aventis-but my decision to join this team was based on the fact that the mission of this climb is diabetes empowerment: showing a positive view of life with diabetes and that we can take our diabetes anywhere we choose!

As with Project 365 I will be keeping a rigorous account of all of the ups and downs leading to the summit-with the goal of producing another film to share about the experience-and I invite you all to stay tuned and follow the next LivingVertical endeavor: ProjectKili (if you are a twitterer/instagrammer, look for #projectKili)

The summit is only halfway. Climbing a mountain, or a boulder-that is purely arbitrary. Why we do it, what we see from the top and what we return to share with others-that is the destination. We have been so blessed with support, love and encouragement from so many of you…that is the takeaway point of all of this-I will have lots of chances to blog about my training for altitude, international travel and expedition style climbing-all of which are foreign to me; but I know that I have the support of some amazing people and that is what put me in a position to take this next step.

Let’s go, together.

ex post facto: lest we forget the obvious, The statements and opinions expressed on this site are those of LivingVertical and do not represent those of Sanofi Aventis (or any other company)

Outrage

By MainAdmin on June 10, 2013 in LivingVertical

I see a lot of outrage regarding the way that the public percieves diabetes, most recently due to the article that Bill Cosby wrote for the NY Times. Sometimes I feel like I am missing the outrage gene, because it takes a lot for me to get up in arms. Hint: if you do manage to really provoke my ire to that point, then be prepared for four-horsemen-of-the-apocalypse-level fury. But my focus in writing this is that I see two conflicting issues that consistently draw “outrage” from the diabetes community.

1) People asking questions about diabetes: If I had a nickel for every time I saw some meme on my social media feeds, or ranting status update about “how pissed so-and-so was” that they got questioned about why they take injections or have to test their blood sugar or why they choose to avoid certain foods, I’d have enough money to pay Bill Cosby to write this post for me.

People are curious and want to understand what makes us different-and why we have to do things differently than they do in order to manage our condition. What’s the big deal? Why is that a bad thing that we must find so insufferable? I can’t tell you how many times someone’s “stupid question” has led to an interesting discussion and teachable moment to educate them about diabetes. Some of these moments have led to friendships and people who have supported Project365 because they appreciated the idea of informing others who might have questions.

The closest I am going to get to being outraged in this post is over the fact that people who don’t have diabetes feel bad or awkward about asking questions because they are programmed to think that it’s offensive to question something that doesn’t make sense to them.

2) People making ignorant statements about diabetes: See point 1, above. If people aren’t informed about diabetes, then how are they supposed to have accurate information about its nuances and nomenclature?

And speaking of nomenclature (which is the spark that ignited the outrage against Cosby) what happened to that petition that was going around to change the name of type 1 diabetes to something else? I remember a lot people kind of kicking that idea under the bus but turning around now and being outraged over the misinformation that Cosby displayed in his referencing an increase type 2 diabetes in kids as “juvenile diabetes”.

Personally I thought the point that Cosby was making was fairly clear-poor diet is related to an increase of type 2 diabetes in kids-not saying it’s a direct cause, but that 32oz Mountain Dew with a happy meal three times a week certainly isn’t reducing the risk factors, is it? Juvenile diabetes was synonymous with T1 diabetes back in the day that the nomenclature was agreed upon. Years ago, any juvenile (child) who presented with symptoms of diabetes was by default, T1. It doesn’t take a PhD from Harvard Medical School to see that across the intervening decades, the diet, eating habits and lifestyle of our society has changed in ways that resulted in both T1 and T2 diabetes occurring in juveniles-which is a new thing.

Clear as mud, right?!

So why is it that we have to lash out at people who don’t have a clear grasp of the nuances of diabetes when they are stating an opinion-not giving medical advice. Granted, Cosby played a doctor on TV but that was a while ago.

Quick! Tell me the differences between Hepatitis A, B and C!

Time’s up! Wait you dont know? Well obviously…if you don’t live with a condition you’re going to have some misunderstandings and that ignorance is something we all share on some level, about some things. It’s not a big deal. It’s not a cause for outrage. A simple, kind explanation would go a long way and open a path for more effective discussions and dialogue.

And yeah, we can’t expect people to get it right 100% of the time when they talk about diabetes. When I see Bear Grylls leading a 5.4 climbing route in a commercial, with three top ropes tied to him, holds breaking and unnecessarily dynamic movements-to sell anti-perspirant to twenty-something males, sure I roll my eyes, but I’m probably not going to take to the streets with torches and pitchforks over the matter.