As a girl born of the Wild West, I have a favorite quote from the Movie "Tombstone" that epitomizes Diabetes...
"There is no normal life Wyatt... only... LIFE". Doc Holliday (Val Kilmer)
In Native American Traditions there is a story told by the chief of the tribe to his grandson, about two great wolves locked in battle. This story is an analogy for the way of nature and life. The grandson asks "Which wolf wins the battle grandfather?" And the chief replies "The one that you feed".
Diabetes As War: The Art of Winning
Ancient Samurai warriors, the most renowned in the world for both their integrity and their skill, included both men and women among their ranks. All Samurai were taught to recognize the value of a skilled program to attain excellence; including experiential training based upon centuries of trial and error in their lineage of Samurai. They were schooled in a multitude of areas including dance, theater, and the martial art Kado, (Ikebana, a.k.a. Japanese floral arranging). It was understood that in order to be good Samurai it was as important to know when not to cut (act) as how to use the blade effectively. If done correctly a Kado arrangement is an evolving thing of beauty that can last for more than two months. A samurai sword was only used to kill when necessary for honor and preservation of life.
The Current Environment
The current environment communicates Diabetes as "a battle that must be fought", and tells us we are "engaging to do battle when diagnosed with Diabetes", and that "we must aspire to beat it".
If we adopt the language of war for Diabetes it is an advantage to be a skilled strategist. The best strategists are truly the ones that win the battle whether it is a choice to retreat, or engaging to win. Strategic skill comes from intelligence and historical experience.
Until now there has not been an effective lineage of experiential teaching to assist people with diabetes to both navigate the illness effectively and change the social environment to one that assists rather than hinders them. People with the condition just didn't survive long enough to have leaders within their own community... and those who did were embroiled in the day to day routines that kept them alive... most of them unable to live the normal they had initially been promised.
Cold Hard Reality
Diabetes is a big challenge. You are actively working every single day.... cumulatively.... for every single day you are alive.... always with the knowledge that if you make a mistake... you may die.
Due to the intricacies of diabetes you might do everything right and still not wake up the next morning.
Diabetes means that every minute... of every day... you reclaim the title "Survivor". And the title costs dearly on social, financial, and functional levels for most.
Diabetes does not care what economic circumstances, ethnic roots, or level of intelligence you have.
There is no escape for anyone with diabetes once diagnosed.
If you told any person on the street, or even a doctor... that control over the timing of their own heartbeat was now their responsibility for survival... while having to maintain daily obligations... and still have a life... some would laugh nervously. Most would think it impossible, but this is a close analogy of Diabetes.
The interactions of insulin are far more complex than the basic functions of the human heart.... and you are firmly placed in the position of trying to "control" an involuntary body function necessary for life... that is by it's actual nature uncontrollable, except through undamaged metabolic/endocrine function.
We work to make the word "control" obsolete as that would be a cure and there is no cure for any form of Diabetes whether Type 1 (IDDM), Type 1.5 (LADA), Type 2, Type 3 (Alzheimer's) Type 4, GD, or others yet to be classified.
Every day new things are being discovered by science that will in likelihood render the synthetic drugs currently used for survival by those with Diabetes barbaric in the future.
Educated decision making can mitigate the effects of treatment and keep the beast caged, assisting to attain optimal health.
Sun Tzu, the great Chinese war General and strategist is credited with writing that it was of vital importance when going into battle to know your adversaries well. This would allow for the ability to know when to push forward and when to retreat in wait for a better opportunity. It could mean the difference between winning or losing a battle, or ultimately, the war. The man who successfully survived in the trench was equally if not more important than any general.
As a Diabetic you are physician, manager, and problemsolver. There is no choice if you wish to survive... and no day off. You are locked in a perpetual battle (we use the term "dance") with the disease and the public... in a state of permanent coping overload. You don't have the option of taking a pill, or sitting in a treatment chair and watching someone else do the work.
You are the work... and you are trying to do it in an environment of ignorance and stigma with inadequate tools.
Youth is not an ally to Diabetes, for Diabetes thrives in the beauty of youth... growing it's power silently... to spring like a hungry beast on it's prey. Neither is age an ally as most don't make it to old age with Diabetes; statistics state that 50% of those who die from Diabetes are under the age of 60 (CDC).
Most current Diabetes role models are people who are in the beginning 20-30 years of the disease process. Their efforts are valuable and visible, but they do not completely reflect the knowledge and experiential wisdom necessary to actually attain the level of change needed to assist people with Diabetes effectively. They are able to state what they believe they are doing right, but have not had the test of time to prove or disprove concepts of what is working and what needs to change due to lack of personal experience over time. Proof is of primary importance. Years of diagnosis, combined with success, is of absolute value as an ally to assist effective life strategy.
As a species humans have a long tradition of telling stories because it gives them a way of sharing that teaches younger generations, by passing on experience and building upon a wealth of historical trial and error knowledge (data, aka applied science), that can create new behaviors modeled on self education.
Isaac Asimov, the renowned author and past professor of bio-chemistry at Boston University, referred to this as "the only real education".
Defining the Problem
The word "sin" derives from ancient military archery practice meaning to "miss the mark", thus; a sinner was a less skilled archer in need of further training, knowledge, and practice in order to become proficient with a bow.
The word sinner is now used as a religious term in Christian traditions for those who miss an understanding of God and walking the path of Christos as teacher. The meaning is the same even if the context has changed.
Unskilled action has a funny way of sticking around... example; the incorrect idea that any person with diabetes did something to deserve what they live with, doesn't do anything to make it better, or ruins their own health. This incorrect perception is more than a hundred years old and just as ignorant today as it was then... maybe more so because it has been fed by an equally incorrect current idea that the patient can actually cure the condition with a change of behavior (untrue). It is the environment that you have been initiated into, even if you have been diagnosed with the most severe autoimmune form of the disease, and is a grossly incorrect perception for any type of the disease even those not discussed here.
Another example is the missed diagnosis of children resulting in DKA. Medical providers need to be held accountable for ignorant actions; which can then result in awareness and re-education to change outcomes. To see a missed diagnosis as a reason to place blame however, is to miss the mark; thereby shutting down opportunities for open dialogue about how to facilitate change.
Until all incorrect perceptions are shattered and effective change is identified and demanded, status-quo prevails, because partial buy-in from anyone perpetuates the current negative paradigm: the end result being uneccessary or early deaths from Diabetes.
Shifting The Paradigm
Knowledge is power.... awareness is power, understanding is power, and experience above all of these is power. No treatment recommendation, pharmaceutical, or technology comes close to the value found in those who have experienced the environment and lived successfully past the first 50 years of diagnosis (long enough to validate their success).
There is a medal granted for this distinction by the country's leading diabetes clinic, The Joslin Center in Boston.
Whether a Joslin Medal or an Eli Lilly medal... they have one thing in common... once you have reached the 50 year mark and survived with diabetes you are recognized as a leader in survival. Those of us who are vibrant members of the 50+ club call it shifting the paradigm and boy are we doing it.
The only truly important questions in navigating the current paradigm are... whether people with Diabetes will engage the right battles, and retreat from the ones better left as detrimental.... and how they can learn to tell the difference between the two.
We are here to assist in educated decision making for those who live with Diabetes with no loyalty to a specific way of practicing our art and no bias other then effective, affordable, do no harm options.
As the Founder of Diabetes Activist (sponsor of this website) and a native Coloradan I would like to leave you with this thought...
Whatever your interest, be it that of a family, an individual, or a group in need of our expertise, assisting our efforts as a sponsor, spokesperson, or supporter, or donating to further the multitude of issues we have dedicated ourselves to, we look forward to your participation in our mission, and we are glad to bring you with us on this journey. Thank you in advance for your courage and support.
If you would be interested in bringing your experience of Diabetes to my attention you may contact me at firstname.lastname@example.org