been an important part of my life to develop a sense of Diabetic
Identity in order to sort out where my individual personality
stands apart from my Diabetes.
I think it's necessary to have a core belief in one's self
and a purposeful direction in life to offset the endless compromises
and tradeoffs that living with this condition too often demands.
with, and dealing with Diabetes, is like wearing what we as kid's
called "Chinese handcuffs" (with no intended offense to
anyone Chinese) sold as toys in five and dime (now dollar) stores.
What you did was stick two fingers in each end of a woven straw
tube, if you pulled each finger out of the opposite end at the same
time the weave in the straw would just tighten that much more around
each finger. The harder you pulled the tighter it got.
Life with Diabetes is like this because more normal a life you have,
the less people see you as someone with Diabetes even as the more
you make Diabetes an issue in your life, the less of a normal life
The trap is, that Diabetes is not some form of lifestyle choice,
living with it presents is a difficult and serious challenge for
those of us who have it. Since it's invisible to the "normal
world", few people understand its complexity, our need for
access to affordable medical treatment and the urgency we face in
finding a cure.
For me one of the great frustrations of dealing with the reality
that an important part of your life goes unnoticed or unappreciated,
even as you are fighting alone to keep it from getting in the way
of who you want to be, or what you want to do with your life.
sure, that short of a cure, what everyone who deals with this condition
wants is for everyone to know what Diabetes is, and what it's like
to live with it. And I don't mean how BAD living with it is, just
just an understanding of the reality of our lives.
ZEN APPROACH TO DIABETES
me, the Zen approach to Diabetes is to take it's constant state
of flux and uncertainty,and turn it around by do this by reaching
a state of detachment. Viewed objectively, each situation, no
matter how negative holds the possibility of an open door of
opportunity for self-knowledge, inner strength, and growth.
site has an entire section devoted to what Juvenile Diabetes is
but if I could define it in a short form it is:
that results in too much sugar in the blood, too much sugar in
the blood is dangerous, insulin brought into the body through
an injection or external pump will bring the sugar levels down.
Too much insulin is dangerous. Almost everything has
an effect on blood sugar levels especially food and physical activity,
too high of blood sugar levels over a period of time may
cause complications such as blindness, heart, kidney, or
I've had Juvenile Diabetes for over thirty years and for most of
my life have never felt how it was represented in the media, ever
matched it's impact my life.
After discovering discussion groups on the Internet also found that
I was not alone.
It seemed whenever our reality was represented in by Diabetic organizations
or their publications it was always by carefree individuals who
never seem truly affected by it.
If the only thing that counted in life is doing what you are supposed
to do, and if by doing everything just right your Diabetes were
to be into perfect control, and because of this you could forestall
it's complications, then living with Diabetes would be easy. This
is how life with Diabetes has always been presented to me, and it's
what I think of now, as Diabetes "in a perfect world".
This is the same perfect world where the sun always shines,
the good guys always win, and every child can grow up become president
of the United States.
There are many people who feel Diabetes is a minor issue in their
lives, this is not a "one size fits all" kind of condition.
I think however that the majority of those who live with it, know
all too well about complexity and frustration of life with Diabetes
in the real world.
would be so simple if what we need to do to live healthy lives
were understood, accepted, and supported by society. Rather
than as something hidden, ignored, or edited out or everyday
often, even when we are doing everything just right, we can find
by checking our blood sugar levels that we are too high or low,
or we can make adjustments in our lives that may work for a while
and then mysteriously, change. There are so many conflicts we face
between taking care of our health, and working to pay the bills,
having good in personal relationships, or trying to find purpose,
fulfillment, or happiness. It can be so frustrating, but I think
one of the most difficult problems having this condition is that
few people understand it or what we have to deal with.
of us who live with this have to endure attention given by the media
to an entire spectrum of issues and conditions, from AIDS to human
cloning. Since most people only know of Diabetes "in a perfect
world" it's pretty much how our lives, struggles and triumphs
over it, is defined.
I know from knowing others with this condition and there is many
people who want the world to understand what it is that we go through
and what living with this condition is all about. This especially
affects me since I'm an artist and I feel that it's my obligation
to try to make people understand what Juvenile Diabetes is and what
to live with it.
That's why I decided to make a web-site. Since each persons mileage
on this condition varies so greatly, I'm not attempting to make
a definitive statement on what Juvenile Diabetes is, but rather,
I'm trying to broaden interest in the depth, complexity and richness
of life with this, in a passionate and creative manner
this site is all about my take on Diabetes, I'd love to put
my name on it, but that could be a problem however, since I
need to find a job, and with out a job I can never get affordable
health insurance, and without health coverage I could loose
That's just the way things are when you have health condition
in America today.
the thing was that, when I started this project, I didn't have a
clue of what I could create that hadn't been done before on other
sites, other than the ability to create original graphics rather
than using clip art.
Once I started working on the site, I realized that I was dealing
with a subject with powerful and emotional connections especially
regarding my own life.
After all the whole aspect for this site using comic book artwork
came from my use of imagination as a way to deal with my diabetes
when I was a kid. I got into comics in a big way not as a form of
compensation for having a medical condition, as in "if I only
had superpowers then I wouldn't be teased or bullied in school"
sort of thing. It was more of seeing my Diabetic life as a form
of alter-ego as in someone who has a secondary intense and dangerous
identity that other people weren't aware of.
me, the invisible world of Diabetes, is much like the invisible
world of the artist, a kind of deep well and spiritual source that
has influenced the direction of my life. Even as a kid, at an age
where I was completely overwhelmed by my condition and when I felt
everything I did was wrong, I could still create out of nowhere
a fantastic drawing, and look at it in amazement, wondering "how
can someone as messed up as me make something that looks this great"?
I sat down and did a series of sketches of how I saw my life with
What I wound up with was a collection of very tough but honest works
that started me on a journey about looking much deeper into my life
with this condition. There have been periods of years where I honestly
didn't ever think that having Diabetes had any influence on my life
whatsoever. The more I examined my past however, I began to see
how especially at crucial times, created the dynamic, and often
self-destructive patterns such as isolation, independence, creativity,
or depression that my life, inevitably fell into.
also started to show the first signs of developing what I had dreaded
and severe complications that come from years of having this condition.
I began to face the real possibility that I may loose my sight.
Growing up with this I always imagined my life would meet either
of two extremes: one was that I would die young, or the other, though
I felt less likely, that I would be cured.
Even though there had been talk of a cure, in the form of an artificial
pancreas ever since I was in grade school, it's estimated availability
was always set for "about five years" until the "five
years" phrase became associated in Diabetic circles as cynical
symbol of false optimism
Then even as I was laying out my site there seemed to be the new
possibility for a cure.
promise of genetic engineering as bold new weapon and a renewed
hope for a cure.
the year 2000, Dr. James Shapiro and a team of transplant surgeons
at the University of Alberta in Edmonton transplanted islets cells
necessary for the production of insulin, into 10 people with Type
1 Diabetes. The success rate was 100% and differed from other attempts
at transplantation (which were often not successful and usually
done in conjunction with the need for a kidney transplant) in that
only the small islets cells, and not the entire pancreas that was
used. These small cells were injected into the recipients liver
and soon began to secrete insulin. The procedure became known as
the "Edmonton Protocol" the blood sugar levels of all
the transplant recipients stabilized, and other than the need to
take a cocktail of "immune suppressant" drugs procedure
seemed to be the long sought after "cure" for Juvenile
was only one problem, and that was that it took nearly two pancreases
worth of donor islets cell for each cured each patient. The cells
where provided by after death organ donations and there would never
be enough donations available to cure the millions of diabetics
around the world.
seemed at the time one solution for this need for islet replacement
cells and that was from transplantation from pigs. Insulin taken
by Juvenile Diabetics for many years came from pigs, it varied from
human insulin by three molecules. The only reason pigs have not
currently been used for transplantation is the perceived threat
of a jump across species of viruses from pigs to humans, even though
this has never been proven.
the insulin available in the United States and much of the world
comes from the cloning human insulin molecules. A perfect solution
for the need for an unlimited supply of islet cells, to transplant
and "cure" the millions of Diabetics who needed them was
a source of cloned islet cells.
islet cells are more complex than insulin molecules the question
was how can science "make" these highly specialized cells.
answer came in the discovery of stem cells.
cells can develop into the basic types of body cells such as nerves,
muscles, tissue and eventually even whole organs or limbs although
science is many years from doing anything of that nature. Since
the islet cell needed to transplant into Diabetics are fairly simple
It's likely that the creation of a line of stem cell could result
in an unlimited supply of human islet cells, enough to cure all
the people in the world of Diabetes.
To my astonishment the possibility that those of us who have Diabetes
could be cured by transplanting animal, or cloned islet cells, from
stem cell sources was considered "controversial" by the
The "debate" over this new science pitted "moralist"
who often felt science was moving too rapidly and needed to be mulled
over by self appointed "bio-ethists". I felt outraged,
living in a society that had too often swept the lives of us with
this condition under the carpet, in a policy of "out of sight,
of mind", did nothing about the discrimination by insurance
companies, by charging people unaffordable rates to people with
chronic conditions such as Diabetes, used "mortality"
as a reason for not pursuing such hopeful possibilities for a cure.
I think what struck hardest was the attitude that this form of a
cure, was worse than the disease itself.
only people knew the truth about what Diabetes was, and what I means
to live your life with it, so for better or worse, the direction
of my site began to take one of showing just how serious and tragic
life with Juvenile Diabetes is, in order to draw attention to the
real need for a cure.