Friday, June 20, 2014

It's Complicated

Much has gone on in the last few days out in the diabetes world.  Because of the ADA conference this past week, (which I would love to go to some day) there were numerous announcements.  One that will definitely effect us, the ADA (American Diabetes Association) has new A1c guidelines for children with type 1.  Another announcement was "Xeris Pharmaceuticals, Inc. Announces Dosing of First Patient in Phase 2 Clinical Trial of its Investigational Soluble Glucagon for the Treatment of Mild-to-Moderate Hypoglycemia".  There has also been much talk about the bionic pancreas and the wonderful work a parent of a type 1 has done on it.  All in all, there has been a lot to digest. (Pun intended).  But one of the blogs I read this week that hit me hard is as follows.  I know that doing everything "right" won't prevent complications.  We try to find a balance with physical and psychosocial issues when dealing with diabetes.  Should Sugar Bear never ever have sugar?  Could we have prolonged his honeymoon with a gluten free, sugar free diet?  Will he have complications because of us or just because of his physical makeup?  Or maybe he'll never have complications!  (A Mom's most honest wish). My job is to try and navigate these murky waters and bring us out as unscathed as possible.  He's worth it but it's "complicated".

Complication: the Powerful Word in Life with Diabetes

diabetes complicationComplication.
That’s such a gentle word in normal parlance. A hiccup. A head scratcher. A riddle.
How will we fit an extra chair at the table? Oh dear, that’s a complication I hadn’t considered. How do you solve for X in this equation? Well, that’s a little complicated. Let me think. What’s going on between you and your ex? Eh, it’s kind of complicated.
To people with diabetes, the word complication is code for “quietly life-shattering.” It’s a code word for failure.
The list of possible complications from diabetes is ridiculously depressing. I’d list them here, but between direct and indirect correlation, the list would be so long that I couldn’t be sure to exhaust the possibilities. Essentially, if a system or organ requires nerves, blood, or oxygen, it’s fair game. Eyes, kidneys, heart, lungs, reproductive organs, skin, bones, stomach. I can’t think of a system that’s off-limits. It’s awful to think about. So we don’t. Most of us online, I mean. We choke it down and push it back and we don’t dwell on it.
Dr. Bill Polonsky (love him) likes to say, however, that well-controlled diabetes is the leading cause of NOTHING. That reassurance always bolstered me when I’d let my thoughts wander to darkened corners.
But then when I wander into the many parent forums where I lurk and see parents reassure one another with “but all of these people withcomplications, they don’t have the tools that we do. They didn’t take careof themselves like our kids will…”
dr. Bill polonskyIt makes me stop and grieve for the parent whose child passes away while sleeping – the parent who was not to blame and was doing everything “right.” It makes me think of my friends with retinal problems or nervous system problems or tingling in their toes, regardless of whether or not they have managed their diabetes well.
And it makes me righteously angry.
We have to stop shaming the victims. Let’s stop writing our fellow PWD off as worst case scenarios. Oh, but it won’t happen to me. Surely that other person…they did something…or didn’t do something…what? to deserve it? Isn’t that the implication?
When I’m trying to prove to the world that I can accomplish anything with diabetes – that I’m a go-getter girl and that I’m healthy as a horse – my dear friend with the scar over her heart from heart disease doesn’t fit my narrative. Her truth is inconvenient and it makes me uneasy.
My friend whose diagnosis was nearly 20 years after mine and yet already has neuropathy in his feet. He takes good care of himself. His truth is inconvenient.
A few years ago, I was invited to an event by my local JDRF. I was alone at a table with four adult type 1 strangers…who all had noticeable vision-related complications. I was new to meeting other people with diabetes. I squirmed in my seat. A lot. I didn’t have a complication. Why was I spared?
By all rights, say some of us, it should be ME considering the care I once took of myself. It’s called survivor’s guilt.
I believe that we need to be more honest that this disease is ruthless and unfair and that the truth is that complications will befall some of us and others of us will remain unscathed. There are people who reach 50, 60, 70, 80(!) years with diabetes and have no complications. There are people who have had this for 5 years and have been hit with something unexpected.
And we all have the same diabetes. Regardless of type, regardless of tools, regardless of care, we have the same disease.
During the Diabetes Hope Conference last week, Ilana asked “How do we acknowledge the luck factor involved with complications while still acknowledging our own degree of agency?”
Jeez, I wish I knew.
I wish I had been able to sit at that JDRF event table and not feel simultaneously guilty and frightened by others’ lazy eyes and surgical scars. At that time, I couldn’t look past my own discomfort to see those people as more than cautionary tales. Victims of a dark era’s diabetes care. It won’t be me! I’ll recommit myself. I’ll…I’ll…
I’ll stop deluding myself. It could be me. It will certainly be someone I know and love, at least. In my time online, I’ve lit blue candles for children I didn’t know and now won’t ever meet. And I’ve said a lot of encouraging, supportive words to people I do know about their complications and their bad news.
And whether they tried or didn’t try, had the best care and tools and education or didn’t, it’s not their fault.
Complications are not your fault. You have been dealt a lousy hand. You gave what you could when you could. And though sometimes it may seem like you gave up, maybe ‘up’ was all you had to give.
This is a hard life, this diabetes.
The media and your cousin and your co-worker are quick to tell you about someone who didn’t take care of themselves and it’s as though they’re saying that that poor soul got what they deserved. And perhaps they’re just as quick to say, oh but you take such good care of yourself. It’s such an uncomfortable kind of reassurance.
It’s not your fault, and yet we must encourage you to do your best to stay one step ahead of it. To stay healthy. To give diabetes no room to try to take your health from you. BUT if diabetes inches in and chips away at the best of you, forgive yourself and one another.
Forgive yourself for the cobwebs in your eyes and the numbness in your feet. Forgive yourself for the lost limb and the hypo unawareness and the cataract and the frozen shoulder. Forgive.
I know.
It’s complicated.

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