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I
began my mission to show the world how difficult life is with Juvenile
Diabetes, the stakes were high, since I was attempting to influence decisions
that might affect millions of lives, including my own, and when it came
to saving my sight, my future as an artist as well.
So
I poured all
of my anger and passion into this project.
I wanted to relate how much Diabetes had influenced my life in terms of
a wall that inevitably holds me, not
so much back, but by making everything such a struggle, turning my existence
into a fight for who I am and what I want to do with my life.
 Diabetes with my dependence on insulin is the "double edged sword that rules my life" it allows me to survive, but keeps me forever outsider. As it makes me a slave to its domination of my life, I fight in a state of unending defiance to break down the invisible cage I live in, to experience the freedom and spontaneity of the normal world. |
| I had never thought of the conflicts with my condition presented with all it's careful management and compromises as much of a noble fight. Certainly never as as any form of heroic struggle. The more that I realized the number of times I had put my life on the line in order to live free and on my own terms, I began to wonder why those of us who daily do battle with it, are never given the same attention as athletes or sports heroes. I suppose it all comes down to living in a culture where people have never been exposed to the kind of battle we wage with this condition, or ever imagine the that hazards we face fighting this disease. |  |
| I began to relate my fight as a kind of primal combat, defending by life against the on going threat of low blood sugars (hypoglycemia) against the drag of the high sugar levels that threaten my sight, and long term survival as well. |
The
more I delved into an understanding of my past the more I realized the
impact this condition had on my life. Especially my identity, even though
I have had Diabetes as long as I can remember, it wasn't until I experienced
several episodes of severe hypoglycemia (low blood sugar levels) and Insulin
Shock, that it began to alter the direction of my personality. Since I
never understood what it felt like to experience life without wide swings
of blood sugars levels I always assumed that when I was tired, or depressed,
or found it difficult to think, that this came from a kind of personal
weakness, rather than the effect that my this condition was having on
me. Unfortunately my personality
as underachiever was
just reinforced and perpetuated by adults in the school system. No one
was interested in what I could do or even the kind of struggles I was
having managing my condition.
I knew in the culture that I grew up in, that people frowned on anyone
who complained or drew attention to themselves.
Rather than than
trying to fit in like a round peg into a square hole,
I began
to feel more comfortable and at ease with myself when I was alone, and
not in competition with anyone else.
On my own I wasn't different, I was just normal, the Diabetes side of
my life didn't matter, I was just me.
All this time I couldn't help wondering, why me? The most dramatic effect of going into insulin shock was the sensation that God himself (or herself) had hit me in the back of my head while shouting WAKE UP!
I
always felt that I was on an invisible path that, when I was on it would
lead me back to my life of who I would have, or should have been if I
had never gotten Diabetes. I knew I was on the path when I felt good about
myself and the people around me, and I was off it when I didn't, it's
that simple. This
has developed into life-long spiritual journey, I found when I was in
nature where my needs as a Diabetic didn't conflict with anyone's schedules
or expectations.
Significant markers on my path have always been set by musicians, writers,
and artists.
So
I stopped beating myself up, and became a loner. I especially avoided
people who out of ignorance, lack of imagination or understanding, tried
to make me into something that I wasn't or didn't want to be.
Luckily I did have a sense of imagination, and I could always imagine
some way to hold on to my dreams and always work on building the life
and personality that I knew existed inside me.
Even so, the more I examined my past I could see that my life consisted of a series of jumps from one crisis into another almost always, involving medical or financial problems, all pointing back to my Diabetes.
When I got around to building this site I found it difficult to say anything positive about my life with disease.
I
felt my intentions were truthful and sincere, and had succeeded artistically
by expressing the difficulties of living with this condition but it just
wasn't right. It goes back to the "Chinese handcuff" problem
of pushing, or rather stretching the negative aspects
of Diabetes so that people would take it seriously when it came to developing
a cure.
It's like when I need to take an injection of insulin in public and people around me think I'm having a crisis, and I have to explain that what I am doing is normal for me. I don't want to have Diabetes, I want it to be cured, but for me, here and now, this is normal. The problem is how do you really communicate this to people?
I didn't want to make a statement on just how Bad it is to have Diabetes, and I didn't want to tell people what they want to hear, that it's all a piece of cake with sugar-free ice cream on top.
What I needed to do was to show the world how normal it is to have diabetes.
All
I accomplished however, was a site that was really nothing more than a
statement
of how much I hated having this condition, complete
with a "myself V.S. The rest of the world" attitude.
I couldn't help thinking about Robert Persigs' "Zen and the Art of
Motorcycle Maintenance" where he stated "to make a perfect work
of art one should not try to make art perfectly, but rather live a perfect
life and make art naturally".
I felt life with Diabetes could neither be perfect or natural, likewise
any advocacy for a cure or even any possible form of cure.
So
I put my site up anyway, even though I knew there was some inspired side
of all of this that was still missing.
