So.  I’m not sure if this is something that everyone else has noticed in their lives, but sometimes it just hits me.  DIABETES IS EVERYWHERE.

Yeah, I know it’s everywhere because it’s a part of me and I look at my pump or check my blood glucose or think about it or I eat something or wonder what my number is nearly constantly. 

It’s a little strange to imagine my life without it.  I wonder what else I’d think about, if I weren’t always going through a body check.

But then I realize that not everyone is like me.  Some people hear “diabetes” and have their own thoughts of what that means based on some random TV show or advertisement on the side of a bus or newspaper article about using some mouse’s pancreas or whatever. 

There is a load of misinformation out there.

I can only hope to positively shift the non-diabetic’s perception of the disease each time I have the opportunity to interact with them.  I want to be a source of some truthful tidbit for each person who speaks with me about diabetes.

Yes, it takes time.  Yes, I’m not always thrilled with taking that time.  I know some perceive it as a personal intrusion (I don’t).  Sometimes, it’s pretty rude.  But really?  I’m not that important that I can’t respond to a genuine question someone has about diabetes.  Maybe they’re just trying to mesh the random bits of information they’ve accumulated in their years of living without diabetes.

I don’t like the other option I have, either.  I don’t want that guy who asked me why I was wearing my garage door opener on my belt really thinking I was wearing my garage door opener on my belt.  I want my pump to just be there, and the only way I think I’ll ever get to that point is by explaining to anyone who asks what my pump is, what it does, and why.  So, I say with a laugh: “No, it’s not a garage door opener; it’s my insulin pump.  I wear this so I don’t have to take shots for my diabetes” or something equally bland and truthful.

I love it when people ask me questions.  I’m not kidding that a few minutes ago I had to call Intuit to get my software registration code; the lady asked me the name of my business and when she heard “Diabetes Outside” she mentioned her coworker’s eight year old son was just diagnosed and the family is overwhelmed and her friend is in his mid 40s and she thinks has the other type but he’s in denial and won’t talk to her about anything.  So we talked and I answered anything she asked me about what she had heard about diabetes, A1c, and what the different types are.

I love that I spent twelve minutes on the phone with her accomplishing something that probably should have taken less than three.  Maybe I helped her to understand a little bit more what we all live with and think about without end. 

Maybe.  For today, that maybe is enough for me.

My friend and webmaster made this comment on a post earlier this week.  It is such a great story I wanted to set it center stage.

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I cry when I think about camp too! Bearskin Meadow Camp does have a certain magic. The summer I was there and had packs of kids teaching me how it is to live with diabetes. They got a huge kick out of doing a blood check with me (non-diabetic) and then discussing with the doc how much snack I should get if any!

One of many completely and unbelievably awesome memories:

I have a fear of needles (one might question the logic of me working at this particular camp, but let’s set THAT aside). I have a SUPER big fear of needles. I tremble, I breathe fast, just when I’m around them wrapped up in their sterile packages.

First day of camp, it’s time for everyone to check their blood before dinner. A camper asks a simple question, “Why are you not checking?” I say, “I don’t have diabetes.” He says, “So?” Excellent point.

So I stand in line with him, we check together, we tell our results to the doc who draws up insulin for him and the same amount of saline for me. My little Blood Buddy (our names for the next weeks) pinched some skin on his tummy, took his insulin and looked at me…. standing there holding a syringe of saline. It’s one of those moments in life when you have to step up, but I was having trouble not shaking.

“It’s not that bad. You will barely feel it” he said. He stood close, explained where he takes his shots, why some places were better for him than others, but really it’s best not to think about it too much and just do it, etc.

I took that shot. And it was no big deal. And neither were all the other shots we took together that session. It would have been a much bigger deal to not check and not take the shots. I would have stuck out like a sore injection site.

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I have been thinking about that kid all week.  Can you imagine what it must have done for his confidence to get to tell a camp counselor how to take a shot?? 

I highlight this story for another reason:  I know many of you whose children and loved ones have diabetes may not know how you can really support them.  It really doesn’t take much.

Be there, be willing, learn from them, and let them lead the way sometimes.  Your caring will come through.

We are in this together.

I met this author when she was a Counselor in Training, my first summer at camp and her twelfth summer.  We all learn from each other at camp!

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As a young child, I remember counting down the days every year until I went to camp in June. By the time May came, I was so excited I could barely sleep at night, opening my window wide and imagining how the night mountain air would smell and the joy of seeing my friends who also had diabetes like me.

I was diagnosed with diabetes in 1985 at 5 years old, and 6 months later in 1986, I spent my first summer at Bearskin Meadow Camp. Primarily, my time at camp taught me how to succeed at living with diabetes and encouraged me to try new ways to manage my condition (for instance, I began using an insulin pump at 15 because I had seen so many others at camp using them). Throughout my summer adventures at camp, I shared my experience of having diabetes with hundreds (perhaps thousands) of others who were experiencing the same challenges as I was. An additional benefit of being a part of camp was that at camp, I felt secure and calm in a way that I had never felt in my home life; at camp, I was wrapped up in a safe cocoon of friends and caregivers who eventually became like a second family to me. This feeling of security inspired me to try new things that I never would have done had I not become a part of the Bearskin family, like climbing Mt. Whitney, a mountain nearly 15,000 feet tall in California, and traveling to Bearskin’s sister camp in Chile to work as a counselor.

Undoubtedly, I could never have become the successful 29 year old professional I am today without my experiences at camp. Not only did camp connect me with others who can truly understand me because they also live with diabetes, it also transformed my life by exposing me to new life paths, some of which were related to diabetes but some of which were not. I continue to lean on the support of my friends from camp today and plan to continue my connection with camp for the rest of my life.

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If you have the opportunity to give someone you know the chance to go to camp, please take it.  It may be a word of encouragement to nervous parents, or a whisper in a child’s ear that these places exist for them to think about.  If you’ve been to camp and have had a similar experience, share it here, or share it with someone in a position to share your experiences beyond the people you know, like a doctor or other medical professional.  You never know how sharing your experiences can benefit someone else!

If you don’t know someone who could benefit, consider the Diabetic Youth Foundation or Iron Andy.  These nonprofit organizations exist to send kids to camp and improve their confidence, expand their horizons, and enable them to grow and be happy with themselves while they learn ways to cope with life and living with diabetes.  You really can change their lives for the better.

-Amy

Another perspective on what camp can give kids living with diabetes.  It’s truly an amazing experience, and one with incredible and long-lasting benefits.  Not everyone at camp has diabetes—several staff members have siblings or parents with the disease, or simply come up for the experience and education that living with diabetes for a summer can bring. 

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One of the most incredible things about working at a camp for kids with diabetes was watching them interact with each other.  It was almost as if they all dropped their shoulders a little bit.  They didn’t have to explain anything to anyone.  They could talk about their diabetes if they wanted to or they could not talk about it if they didn’t want to.  They could joke about something diabetes related and it was OK.  Not only was it OK, but all of their peers would understand and identify with what they were talking about.  They could just be kids.  It was amazing to watch and even more amazing to be a part of.  Now I get to see that with adults and it’s the same response.  The support they feel when they are surrounded by people who get it is awesome. 

Carrie Cheadle M.A., CC-AASP, Former employee of Bearskin Meadow Camp

Carrie is a Sport & Exercise Mental Skills Coach and coaches athletes and teams on mental skills training and peak performance.  She currently runs the Mental Skills Training Program for Diabetes Training Camp.  For more information on how to sign up for Carrie’s newsletter, follow her blog, or follow her Mental Skills Training for Athletes page on Facebook.

Since it’s now June I feel a strange excitement brewing.  What is it??  SUMMER.

To me, summer meant CAMP for a number of years.  It meant packing up my belongings into as small a container as possible and saying goodbye to my regular life because I was moving up into the mountains for three months.  It literally meant checking out from the rest of the world—there is no TV or radio reception up there, no cell reception, and no paperboy rides by at 5800’ to deliver the paper.  Sixty staff members share two pay phones all summer long.

But it is all worth it.

As type one diabetics, we live with our disease in a rather isolated way most of our days.  For a kid, that’s rough.  Shoot; it’s rough for an adult!  But all I know is, CAMP HELPS KIDS LIVING WITH DIABETES EVERY DAY OF THEIR LIVES.

I’ve seen more and done more than I ever thought I would do both at camp and in the rest of my life thanks to what I learned working at Bearskin Meadow Camp, a summer camp for kids, teens, and families living with diabetes. 

I get to show my love and appreciation for camp in another way now that I am now involved in Run the Coast, and Run the Coast serves to benefit the Iron Andy Foundation, and the Iron Andy Foundation serves to send kids living with diabetes to summer camp.

I’ve asked some friends I met at camp to share their camp experiences.  I’ll post them here all week.  Please enjoy them and learn what a difference camp can make!!

Getting It, Learning It, Laughing at It

by Janet Kramschuster, C.T.R.S.

I spent my first week at summer camp in inconsolable tears. I was a young girl just diagnosed with type 1 diabetes. My parents shipped me off to summer camp. It was their solution for helping me deal with my disease. I cried morning, noon, and night. My two counselors were desperate to halt my hysterical tears, but there was no consoling my nine-year-old mind. I was shuffled from counselor to counselor, from nurse to nurse, more so as a respite for them than attempts to end my tears. I was miserably unhappy and homesick, bound to turn diabetes camp into the worst experience of my life.

In my mind, my miserable camp experience was all my parents’ fault. How dare they leave me to the throws of two inexperienced counselors in the wilds of the woods at an unfamiliar place with other kids with diabetes? How dare they separate me from my friends and family for a week? How dare they force me to bond with strangers to whom I felt I could not relate—even on the smallest level? How dare they send me to a place where no one knew my routine of taking shots, or my method of checking blood sugars, or my way of eating according to my meal plan? Worst of all, how dare my parents, after that first miserable week at diabetes summer camp, force me to go back a second year?

Twenty years later, I am now the director of programs for a nine-week summer camp for children, teens, and families affected by type 1 diabetes. That is the story I tell when nervous parents call my office to talk to me about prospectively sending their child to summer camp for the first time. I tell that same story on opening day as anxious parents drop off their children to camp. For some of the parents, it will be their first time in years turning their child with diabetes over into someone else’s care.

In chatting with parents, I tell them how grateful I am that my parents had the courage to rage against my stubborn attitude—and dare to push me towards the diabetes summer camp experience, not just once, but again and again. I am amazed that, although not “camp people,” my parents somehow understood the benefits of the independent camp experience for me as a young girl with a chronic disease. They understood the significant impact and power that camp had in bringing together a group of girls affected by diabetes into an environment that promoted growth, interdependence, independence, health, and new knowledge.

The importance of the summer camp experience for children with diabetes, or any chronic condition, cannot be understated. As a director of programs of a type 1 diabetes camp, I see daily the power that camp can have in really changing the lives of children and families that struggle with the condition.

Getting It

I hear so often from the campers “no one else gets it.” “Gets what?” I respond, secretly knowing the answer. “Gets how I feel when I’m low, or high, or when I have to do a shot, and I don’t want to. Or gets what it’s like having to eat in class when no one else is allowed, or when I’m not allowed to eat in class because I’m low, or when I have to go to the nurse’s office just to take my insulin. Or gets what it’s like to wear an insulin pump, or what it’s like to have to deal with questions every day, or what it’s like when someone tells you that you shouldn’t be eating that because it has sugar in it.”

The list goes on and on. “No one else gets what it’s like.” And the truth is, no one else does get it outside an environment where so many people have “it.” At no other place but summer camp for kids with chronic conditions like diabetes can someone utter, “I’m low” or “I’m high,” or “I hate being attached to this tube sometimes”—and immediately ten, twenty, thirty people around inherently understand what those words mean. At no other place can a child utter, “I hate this disease,” or “I feel ugly because I have to wear this pump and I have needle marks,”—and there is immediate help, advice, empathy, support, and understanding—right then and there from people who also have felt just that way.

Staff at camp “get it” because most of them “have it,” or have lived so much in “it” that they understand “it.” By being in an environment where people just “get it” without having to explain, campers are offered a new support seldom felt elsewhere—a new sense of belonging and a silent connection with others that is rarely reached in any other environment. With an unwritten understanding comes friendship—and friendship lies deep between those with diabetes. For many, camp is the first time that they can breathe a deep sigh of relief and enjoy the respite from trying to and needing to explain.

Learning It

It’s a beautiful thing to watch campers pick up new knowledge at summer camp, knowledge that can help them manage their disease better. It is wonderful when a camper comes to camp and does her first independent injection because all of her friends are doing theirs and someone has taken the time to show her how. It is so moving to watch a girl choose a new finger to poke with a sharp, because her best camp friend is doing it, or to watch a camper finally learn how to use an insulin pump because a staff, wearing a pump, is taking the time to teach her how to press the right buttons.

Campers at diabetes camp are inherently immersed in knowledge sharing and information. The environment is conducive to sharing, and it is unavoidable. Kids inevitably learn new skills by watching their fellow campers and staff, and by being gently encouraged to try new things—whether it is giving a needle, doing a finger poke, jumping in the lake, or going on a five-day backpacking trip. I cannot count how many children come to camp and achieve “firsts” because of the support. At diabetes camp, those “firsts” open up doors that have sometimes been locked for years. A first shot means that a child and her family can now begin to consider sending that camper to her grandparent’s for a sleepover. A first finger poke in a new finger means that a parent doesn’t have to worry as much about nerve damage in his child’s single finger that has been repeatedly poked again and again. A first conversation about drugs and alcohol, and all the challenges faced in the real world, means that campers are leaving us a little bit more knowledgeable about their disease—and a little bit more empowered to make the right decisions that will promote their health when the time comes.

Not only do kids learn to take better care of themselves—and are inspired to do so knowing there is a whole community out there struggling with growing up just like they are—they gain new knowledge that can be used to better their own care.

Laughing at It

I was sitting in the audience at our variety show last summer during a family camp session when a family got up, their youngest child with diabetes, and proceeded to do a skit about an “Insulin Shop.” The crowd responded with laughs of hysteria. At diabetes camp, we frequently have visitors from “The Incredible Humalog” (The Incredible Hulk), “Insulina Jones” (Indiana Jones), “The Insulin Fairy,” “Super Syringe,” and “The Bolus Wizard.” We share funny diabetes stories and tell diabetes jokes—making light of a sometimes serious and frightening disease.

We teach parents and campers that it is okay to laugh sometimes about their condition, even through the most challenging of periods. Campers begin to laugh and share the lighter side of a chronic condition. The laughter often spreads to even the saddest of people. Campers learn that sometimes it is okay to laugh, and that they are capable of making that laughter happen. This laughter leads to confidence, confidence leads to coping, coping to thriving, and thriving to living life.

As miserable as I may have been that first summer, how grateful I am now—as a healthy, confident woman with diabetes—that my parents decided to send me to summer camp. As much as I pushed against it, they pushed back, and thankfully, they won. I am convinced that in that first summer they must have seen a little glimmer in my saddened eyes that told them that I would eventually fall in love with the camp and everything about the camp experience. Camp for children affected by chronic illness has changed so many lives, mine included. This is just one of many cases in which I utter those dreaded words that all of us hate to utter, “My parents were right.” And how right they were!

The Diabetic Youth Foundation’s Bearskin Meadow Camp is in its 73rd summer of operation, founded not long after the discovery of life-saving insulin. The residential summer camp is located in the Sequoia National Forest, California, at an elevation of 5,800 feet. Over the course of the summer, it serves 850 children, teens, and families affected by type 1 diabetes, and the camp serves another 800 affected by diabetes during its year-round programs.

Janet Kramschuster, C.T.R.S., M.S., director of programs for the Diabetic Youth Foundation, operators of Bearskin Meadow Camp, has attended and worked at residential diabetes camps for the past twenty years in Nova Scotia, Massachusetts, and now California. Kramschuster is a certified recreation therapist and recently earned her master’s of science in recreation and leisure studies.

This article was originally published in the Winter 2005 issue of Bear Facts (Vol. 4, Issue 1), a newsletter published by Bearskin Meadow Camp.

After a calm but incredibly cold night up at camp, I started my first day of Work Weekend slightly frozen and quite apprehensive.  Everyone was incredibly kind, but it was all new. 

All of it.

(Not only was it all new to me, it was all at 5800’ elevation; I was out of breath kind of a lot the first few days!  Everyone was.  Good times!)

I met one family and kind of latched on; they had three sons and the middle son had diabetes.  They were a fun family and always had a fun story to share. 

We were all working hard, yet with a camaraderie I didn’t experience often.  People started talking about “Bearskin Magic” but I couldn’t recognize it yet.  I saw parents involved in their kids’ lives and their kids’ diabetes, which was cool enough for me. 

No one said the word “diabetes” at a different volume than any other word.

Maybe that was the magic they were talking about?

I remember playing cards in the dining hall that second night and having a great time talking to the son with diabetes.  We were having an animated conversation and his mom told him it was time to check his blood sugar.  He did, and was low.  I continued to talk to the boy as his mom went to get him some apple juice.  When she came back, I was still chatting away with him.  We were having so much fun that I had to remind him a couple times to drink the juice that was in front of him.  His mom later told me I’d do just fine working there that summer because of the way I treated him when he was low and distracted from treating the low.

None of it was a big deal.  No drama.  Just life.  Life with diabetes.

I guess it’s that Bearskin Magic that is making me cry about this as I type.  It seems like such a little thing, overall, but wow it isn’t.  I would be crying if I were at Work Weekend this year, too, since I cry a little each time I’m up at camp. 

Camp is a very special place.

We all carry our diabetes in different ways; ways that change with our mood, with our glucose levels, with what happens in our daily lives.  Spending even that first weekend someplace where the world looked the same, where we had stories we shared about what got us to camp and stories we shared that had nothing to do with camp or with diabetes gave me an opportunity to see that I wasn’t alone.  It gave me a chance to see some people whose attitudes I wanted to imitate and gave me a chance to be immediately accepted into a kind group who knew my pain, accepted it without mention, and also had a load of good fun to share with me, too.    

Like I said yesterday, sending myself to work at summer camp was the best decision I’ve ever made.  Everyone deserves the same opportunity to feel accepted into a group no matter what mood they’re in, what their glucose meter says, or how many times they’ve been low or high that day.  We all need an opportunity to have others share the weight of of living with diabetes we carry without rest.  We all deserve a chance to sing a song rhyming “glucose” with whatever we can think of to make it work.

We are in this together.  It’s really the only way to get through, and the only way that makes “getting through” worth it in the end.

(Now that I think about it; what rhymes with “glucose”??)

I made a big decision and acted on it twelve years ago, this Memorial Day weekend.  It turned out to have been one of the best decisions I have ever made.

I decided to go to summer camp.

I was about to turn twenty-one when I started thinking about it and had just left my third college, midway through the second semester. 

I decided I needed a change; one that would take me as far from business management classes as possible.  I thought of what I enjoyed doing—working with kids, and working hard.  I looked at applications to work on a Disney Cruise line.  Seriously; how fun would that be?? 

But then I thought about what it would be like to live on a boat for however long, and what it would be like to be out there on the ocean and have something happen with my diabetes.  I knew there were doctors on cruise liners, but I also knew that a cruise ship doctor isn’t going to be a great diabetes doctor.  So I kept looking at job options for myself.

I had lived with diabetes for ten years, but things hadn’t been working for me.  I knew my doctor wasn’t happy with me, and simply kept telling me to come back every 2-3 months.   I had been on a pump for a year and a half, but I just knew my body wasn’t happy with my typical A1c.  I knew it wasn’t working. 

I knew if I didn’t make a change with my diabetes, something was going to have to give. 

I thought it would be me.

I found an application to work at a summer camp for diabetic kids.  I had attended a summer camp after being diagnosed, and it was okay.  Not stellar, but okay.  It was worth a shot.  *I* was worth it.

After going through the application and interview process, the Diabetic Youth Foundation hired me to be work as the Arts and Crafts person for the summer at Bearskin Meadow Camp.  They suggested I come up to the camp over Memorial Day for what they call Work Weekend; as many families and staff come up as possible to de-winterize the camp and get it open and ready for the summer.

Nervously, I said okay.  My sister and I drove up and were doing okay until we entered Sequoia/Kings Canyon National Park and saw the piles of snow by the side of the road.

Ut oh.

Snow?!?  At summer camp?!

What had I gotten myself into?

I’ll tell you more about it tomorrow.