Wednesday, June 24, 2009

Pink Elephants and The Promise of a Cure

I'm not the type to just accept what I'm told without question. I try to think for myself as much as possible. This was, to some degree, a cause of annoyance for my God-fearing Mother who would become exasperated when, growing up I would ask some pretty bold questions with regards to religion. When her answers to my questions would leave me with still more question and her with a dwindling supply of answers, she would resort to telling me that I must just "have blind faith." That one never sat well with me, much to her chagrin. We live in a world where too many of us swallow information we are fed without question and never use critical thinking skills to discern how accurate, relevant or credible that information is. I have been known to hold some rather realistic (some might say pessimistic) views about the ways of the world.

As a nurse and upon the orders of physicians I have doled out more pills and medications than I care to admit. A problem is perceived, a doctor is consulted, a prescription is written and another pill is added to a patients medication profile. The more pills I administered the more a nagging question kept creeping up; just how necessary and effective are all these PILLS!? And furthermore, just how rich are the pharmaceutical companies getting off of people who never ask that question but just trust their doctor to be doing what is necessary and effective?

Needless to say I am not one to run to the doctor on a whim. And I only take my children to see a physician when I am certain the symtoms warrant it. I'm well aware of the serious dilemma we face with regards to the overuse of antibiotics and I'm sure that problem has been exacerbated by people, especially worried parents, who insist on taking their children to the doctor for every little sniffle refusing to leave without a script for antibiotics. I am very suspicious of the pharmaceutical industry and so it galls me that, until (unless) a cure is found I am at their mercy with regards to my little girl's very real need for pharmaceuticals. And not only does she need insulin, she requires a long list of other medical supplies to remain healthy. And in the years to come she is liable to require even more pharmaceuticals to maintain her health like blood pressure and cholesterol lowering meds. At the risk of sounding cynical, the pharmaceutical companies must view diabetes, and indeed all chronic conditions as their "cash cow". The money they make and will continue to make in "helping" people to "manage" their diseases, provided no cures are found must be far more than obscene.

So where, may I be so bold as to ask, is the impetus to find a cure?

Now, having a daughter with type 1 diabetes puts me in an interesting position, in light of my views. On the one hand, I have significant doubts that human kind will ever see a cure for any of the handful of diseases that are presently "treatable" with a lifelong reliance on pharmaceuticals and medical devices. On the other hand I am compelled to remain hopeful that a cure will be found and made available. The notion that my beautiful baby girl is destined to live her entire life "managing" diabetes is almost too much for me to bear. I must remain hopeful, in spite of my realism; in spite of my cynicism.

This year for the first time I did what every parent of a child with diabetes does. I, along with my dear family, some close, supportive friends and a slew of other heart-broken parents "Walked To Find A Cure" for my little girl and every other person, young and old, who has to live with type 1 diabetes. I petitioned friends and family for pledges to aid in this quest. And as I did this I thought of all the parents who were drafted into this war before me. Parents who's children are now grown, living independently, taking full responsibility for their diabetes. These parents had the same wide-eyed, innocent belief that a cure was "just steps away". And year after year they went through the motions, sought pledges, donned the runners and walked. And hoped.

I would like to talk with a few of those parents who are veterans of this seemingly endless battle. Do they still maintain the same hope for a cure as they did in the first few years after their child's diagnosis? And what about all of the children who are now grown? Do they hold on to a strong faith that their promised cure is close? Or do they look at us, the new recruits with a mix of compassion and empathy for the wide-eyed innocence we possess, knowing it won't last. It can't last. One can only believe in the promised land for so long before the repeated disappointment wears one down and breaks one's spirit.

I apologize for what seems like a very negative post. I debated long and hard about how and if I should broach this subject. I know as parents we need to hang on to hope. It's too painful to contemplate what I am suggesting. Sometimes I wish I could just take my Mother's advice and hold on to "blind faith." But this has been weighing on my mind since my daughter's diagnosis. And I'm not the kind of person to subscribe to a blind, unquestioning belief in anything. I can't be alone in feeling this way. And I can't ignore the big pink elephant standing smack-dab in the middle of the room anymore.

1 comment:

Unknown said...

Thank you so much Sherry for sharing you blog with me. I only read a few posts - it became hard to read through the tears! You articulated everything I've been thinking and feeling about my girls diagnosis and her future because of it.