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Today.

I came home today to discover so many blue candles in bloom online.  Within a few clicks, I saw her face and read her story and felt that pang of loss for someone I'd never met.  Again. 

I wanted to repost something I'd written last October, because it's still true.  Diabetes is a tough, invisible disease that can devour us entirely, but we are strong.  We have each other.  We have today.  And we need to reclaim the unity in our community, because we are what matters.  It's you.  All of you.  All of us. 

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Go hug someone.  Send an email to someone randomly and tell them you love them.  Be good.  Do good.  Be the people who make the world better.Last night, I woke up at three in the morning and listened to the sounds of the crickets outside my bedroom window.  Not a human sound could be heard.  When I closed my eyes, I could hear my own heartbeat.  And even though I don't spend the majority of my time worrying about diabetes complications, my mind went immediately to the news I heard yesterday, about another young child with diabetes taken while she slept.   (The both tragically named and tragically accurate "dead-in-bed" syndrome was to blame.)  She was 13 years old, her parents were active and engaged in her care, and there wasn't anything that anyone "did wrong."

The Children With Diabetes website describes "dead-in-bed" happening "after having [the patient] having been observed in apparently good health the day before.  No cause of death can be established."  The article also goes on to say, "In a recent review, clinical reports strongly suggest that nighttime hypoglycemia is a likely prerequisite of the event, but that the death is sudden and probably caused by cardiac arrhythmia. It is postulated that early signs of nerve damage (autonomic neuropathy) can result in a disturbance of the autonomic nervous system." 

I don't know what to think.  I can't comfort myself with the fact that I have access to a blood glucose meter and I'm testing my blood sugar regularly.  Or that I've been to the doctor more in this year alone than I have been in all other years combined.  I don't feel confident that I have 24 years of what some have called "borrowed time" under my belt.  Even the CGM, with its protective bells and whistles and warnings of both highs and lows, doesn't offer me solace right now.

I felt scared.  I'll admit it.  I felt so sad for her family and for all the families who have had to weather this kind of storm.  Because there isn't any rhyme or reason to this disease.  Even when signs all point to "fine," there's a chance your body can just give out.  And that's something that keeps you up at night.  It's something that kept me up last night.  My brain was spinning and grief for a family I didn't even know was prickling.

This is scary, without a doubt.  This is the kind of stuff that I, as a blogger, want to pretend doesn't happen.  I want people to find my site, and the sites of my fellow diabetes bloggers, and feel comforted because we're all alive.  Our health levels vary, but we're all alive.  And the idea of the parent of a newly diagnosed child stumbling upon this story breaks my heart, because this is not the rule of diabetes.  

Dead-in-bed is the exception.

I wondered if premature deaths in people with diabetes are rising, or if we're just hearing about them more often.  I used to be the only diabetic I knew, but then the Internet introduced me to hundreds of others living with or caring for the same disease.  And now I have an extended family of people with compromised immune systems.  So I wonder if these tragic deaths have been occurring for as long as I've been diabetic, only I haven't heard about them so readily because information didn't spread at the rate it does now.  And as awful as the feelings must be for those who have lost a loved one, I wonder if it would be worse to not have the larger diabetes community to lean on for support?  Would I feel better not ever hearing about these difficult times or would I rather deal with diabetes alone?  I think everyone's experiences vary, and emotions run high in times like these.

I thought about my daughter, asleep in her crib, and the instinct to protect her from everything rose up in my throat.  But I can only do so much.  I can only protect her, and myself, from so many things.  The rest becomes part of life and part of circumstance.  I can't make myself lose my mind with paranoia, even though I love her endlessly.  I need to let her live her life.  Just as my mom lets me live mine, despite her fears as to what role diabetes may play.

We do our best, as parents.  As children.  As diabetics and the caregivers of diabetics.  As people.  Tragedy will come and go in all of our lives, but the best is all we can do.  Life goes on for those of left behind.  And we can't exist in fear.  Even though it can be so scary at times.  We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we're able to be, and as healthy as we can manage.  We lean on one another for support in these difficult times, and we look forward to today for inspiration.  

Hug your loves ones today.  As many as you can (even your cats).  Because when it all boils down, I love you guys heaps.  Seriously.we're all we've got.
- October 21, 2010

Comments

My love goes out to them..im t2 diabetic and have nueropathy amoung other problems from our disease...but its even sadder to think a 13 yr old child kiss their parents goodnight and pass away from diabetes.. sad to think AIDS broke out in the 80's and science is closer to a cure if not containment of it and dr.s and science still cant really "put to sleep" temporarly or cure us..

Oh, Kerri. This hurt my heart. I sit here crying. I don't want to pass this disease down. I don't want anyone to have it. I don't want to have it. :( its so unfair.

Oh, shit. That's all I can type. OH SHIT.

I'm not a night time checker, unless there is "illness" in the house. Should I be? I squash this so far down. I have to, you know?

Just oh shit.

Thank you for re-posting this. It hurts, just the thought of it. And I'm a nighttime checker. It's my greatest fear and my greatest worry, and I'm not much of a worrier. But this, this just cuts me to the quick. Such a loss to this damn disease.

Kerri, I cannot find her story... help ?

Breaks my heart. I can bear every needle I have to inflict, every sleepless night, every trek to the doctors, every diabetes moment with my daughter ....but I could not bear this...

Thanks for posting - even though it has me crying. I am the dad of a T1 beautiful/tough 8 yr old daughter and we check almost every night because we just never know when she will go low or high. My prayers and thoughts go out to this family that I do not know and just learned about.

Thankyou for posting this... It hurt me so much to keep reading this but I had to push through that nervous flip flop in my stomach because this is reality. I don't obsess about what can go wrong but I'm not blind to it either.

I feel so bad everytime I think about it.

Hugs to Type1 parents and to the PWD who have to deal with it.

The Internet and modern medical science have had two contradictory effects on medical reporting (whether by professional journalists or "just plain people"): many fewer deaths are "unexplained" (i.e., "Great Aunt Gertie died in her sleep. She just laid down for a nap and never woke up."), and we hear about more triumphs and tragedies ("@mytwitterfriend: Did you hear about @mutualfriend's good news? And that @someoneelse was found dead-in-bed?")

If the studies about intense control leading to more deaths (because of more hypoglycemic attacks, because they're studying A1c, not CGM readings, and because CGMs only measure bg at one surface point on the body) have any real value when translated to real, younger patients with T1DM, then perhaps ADA's "7% or below", and AADE's "6.5% or below", are not the best guidelines for exogenous-insulin-dependent PWDs.

Beautifully written Kerri!! As always!

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