Finding hope in the High Sierras

Since loosing my job after 9/11 I had spent a lot of time on the road, I just spent a week in San Francisco visiting friends, and checking out the city. For years I had wanted to live in the bay area, and now seemed the perfect time, if ever, to start preparations for the big move. I had sent in an application to work at a Diabetic camp before leaving for California, and the day before I was to return to New York received a message that I had been accepted!

The headquarters building with built in "low room".

For some reason I assumed that I would be one of the very few working there who had Diabetes, but it turned out to be over a third of the staff including the full time doctor a veteran over twenty years.

The atmosphere at the camp was unlike anything I had ever experienced, the staff members were supportive, uncritical, and accepting of life with this condition and each other.

After all I had seen a lot of things in New York, including weird haircuts, punk clubs, body piercing, and finally passenger jets flying into buildings, but in all the years that I had lived there never anyone publicly checking their blood sugars, taking an injection, or wearing an insulin pump. I had even attended some support group meetings but stopped going since the subjects often discusses was "how to keep people you know, or at work, from finding out that you have diabetes" or an attitude of "let's just steer away from getting bogged down with the emotional aspects of this", making it more like an anit-Diabetes support group than anything else.

What I found here in this remote area, high in the Sierras wasn't so much Diabetes-land as much as normalicy-land for someone with Diabetes. You might find a bottle of insulin sitting on a table along with any another form office supply, just as sugar or glucose tabs or test meters were never very far out of reach.

I had come here hoping to find some perspective on my life with this condition and to find some insight on why my web-site had been such a failure. I began to realize that camp, like my site, was about to take me on another unexpected turn on my journey of self-understanding regarding my life with Diabetes.

The first week was an intensive series of education seminars on an understanding of Diabetes, and taking care of people with it. I seemed apparent that the program had a heavy impact on the as it cut into the emotional issues that the campers and Diabetic staff members face dealing with the complexity of this condition. I wondered how difficult all this might be to grasp for the non-diabetic staff, but there was an atmosphere thought the camp that we were all in this together.

One of the camp decks where you could sleep under the stars, even with your glasses on.

On my time off (we were officially given two hours off each day, and I do mean a twenty-four day) I would attend the various educational programs given to the parents, while the kids were at play. The most emotional of these was when all of the parents would put their chairs in a huge circle and they would pass a microphone each talking about their experience with their children and Diabetes.
Around the microphone was wrapped a roll of toilet paper, which was used frequently by adults in a group taking turns openly crying for their children.
This represented the core reality of life with Diabetes, the fears, the dangers, the overwhelming emotional struggle, that grapples all of us bound by this condition, and I found myself shedding tears along with them.

This is the side of this condition that people just don't understand, and for all the research that I have done for this site, no book, magazine article, or web site has brought me to tears the way witnessing these parents who were isolated, fighting this disease alone opening up to each other together amongst the tall trees of an inspiring forest.

I felt one of the most common concerns that I picked up from parents was the fears that they were unlike other parents taking proper care of their children. From so much of how Diabetes is covered by Diabetic publications and the media that it was just a skip and a jump to manage. The parents couldn't understand why they could never keep their children's blood sugars undercontrol, and how they should express this frustrations to their children. They wanted their kids to experience some degree of independence, freedom and happiness, but blamed themselves when their test ranges were too high, fearing that they might be responsible for future damage to their health through the onset of long term complications. They also had to deal with the resentment their children had to having their lives controlled and the fears of sudden blood sugar crashes. All this made me appreciate the difficulty my own parents had dealing with my condition as I was growing up. I was nice to know that at this unique place the families and their children were not alone, and had each other to relate to.

The camp had an effect on me that I had not expected, for someone who has spent his life more or less as a loner, I started to enjoy being around people. In grade school teachers complained to my parents that I was too much an extrovert and clown, but that part of my personality was crushed after a series of episodes of insulin shock, Here I found myself opening up to elements of my true personality buried by years of self-anger brought on by the social conditioning through school and having to compete in a world that was ignorant of my condition,

During orientation, the camp director repeated used the term used called "camp-o-rific", for anything ga-ga happy, and "uncamp-o-rific" for just about anything else. I began to see the difference to the normal reality of Diabetes around other Diabetics and how our condition was represented in the media, and I began to think of our lives represented as "diabet-o-rific", that is all the themes that make our lives seem ga-ga happy, and "undiabet-o-rific" as what we experience in the real word. I'm sure many people will find my website to be pretty undiabet-o-rific, It's just that I find expressing the emotional dynamics of Diabetes, in an honest way, creates an opening to the rewards a person can find through living with this, or any other medical condition, these include self-growth, compassion, companionship, and creativity.

	I started working on a series of concept sketches to get sponsorship from medical company to create a virtual Diabetic camp. It was my ambitious attempt to create a web-site so that kids from all over the world could experience a life of normalcy along with others just like them in a place of fantastic nature and beauty.
Sketches for a proposed section where the camp mascot teaches kids about managing their Diabetes.

One evening as I was doing my garbage rounds, I say a more than middle aged couple and their young daughter sitting on a bench. The man had gray braids in his hair and the girl was probably too young to understand much about Diabetes. The parents looked working class, as were mine, and not representative of the happy people represented by people who market diabetes and diabetic products. Still they had a brightness of pure joy and pride that illuminated their daughter. This might be a scene that I might have come across if I were to walk through Central Park some afternoon, but here it translated into pure magic, these were parents, who loved their child so much that they brought her to this remote location where she could be completely normal, not only would strangers not stare as their daughter took care of here Diabetes, (I think she was too young to understand even what having diabetes means) but she could be around others just like here, with no difference, no such thing of having a disease or not being normal. It looked like a scene painted by Van Gogh or Rembrant full of purity, innocence, and grace.

The stream that bordered the camp where I would experience my daily "moment of Zen" and coffee before starting my breakfast shift in the kitchen.

At the end of one session there was a day devoted to education, and teens were given choices such as "counting carbohydrates", what to do on "sick days". The session I attended, including nearly all the campers and Diabetic staff was one devoted to "the cure". Each time the lecturer got to a point of taking questions for his presentation the subject of stem cells always came up, finally he came to the subject of bio-engineering. He asked the crowd if they knew why stem cell research presented a problem in developing a cure.
From the back of a group packed with teenagers, a quiet lone voice said, "because Bush won't let us have it".
I knew if that moment, and the images I had witnessed of staff, teenagers, and kids living normally, and living with this condition could be shown to everyday people, the "controversy" presented by bio-ethisists and religious fundamentalists over the "morality" of bio-engineering would soon fall apart.

Since I don't work for 60 Minuets, CNN, or NPR (in fact at the time of writing this, still unemployed) I knew that I could at least attempt to communicate what was going on at the camp on to the Internet. Using my trusty 6 year old Apple Powerbook I set up a proposal of what was needed, a flowchart for building the site and a sample front page. On a one day break between camp sessions I was able find another older Macintosh desktop computer system that was about to be trashed, this included two items that my Powerbook lacked, a decent monitor, and a CD drive.

I found a space in the craft-hall, in the abandoned darkroom used when the camp made their annual year book (the last issue was 1987) and started designing a new digital issue to be presented on line as part of an ambitious redesign of their web-site including the use of their camp mascot, a bear to teach kids, and their friends about Diabetes.
The work at camp was dirty and often Unpleasant, dealing with cleaning, cooking, and emptying the garbage, but there were many times that I would reflect, while walking through the camp, hiking through the forests, or working with the kids and watching them have a great time. I felt I had found a form of paradise, and a place tocall home.

This I was eventually able to build a web site for the camp it's location may be found at
http://www.dyf.org/

My last day at camp I was looking at some of the drawings done by some of the kids which were posted on camp headquarters building.

There was one in particular which caught which caught my eye, it had a simple message which said it all, and that was...