Sunday, April 7, 2013

Pet Peeve

Today's Prompt: Sensationalize. Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

There's nothing I would rather write about LESS than cure claims. They don't deserve much chatter. And they piss me off. Not to mention that I've written on this prompt before two years ago.

My community had a recent "upset" (that's a nice word for it) when one of our respected members claimed to have insider knowledge that the cure might be at hand.

Spoiler alert: It was bullshit.

Some of us who have played this game for a while knew it was going to be bullshit. We braced for the aftermath. But others didn't. People wept. Genuinely wept. And it got so unnecessarily ugly.

The "end" has been in sight for NINETY YEARS. I'm not joking. The earliest news articles about the discovery of insulin in the spring of 1923 touted that scientists had figured it out - insulin was the cure.

Then FORTY years ago, scientists figured out how to cure diabetes in mice via transplant of islet cells! So, really, in humans it would be any day now. Whew. That's a relief. We can wait 5-10 years. 15. 20. Okay, so it's like 30, 40 now, but who's counting. Off by a hair. Islet transplants are still where researchers are spending their energy. We'll have it. Just, um, I'm sure, it's probably 5, well, I mean, after FDA approval, surely at least, you have to consider red tape and all, so maybe like 10 years out.

I was diagnosed 23 years ago. My pediatric endocrinologist looked at me, a 10 year old girl in a hospital gown just coming out of a coma, and told me point blank "They've been saying a cure is 5-10 years out for many years now. Who knows - maybe they're right? But you more than likely need to learn to live with this disease for the rest of your life."

Listen folks, I won't stop you from believing. Hoping. And I desperately don't want you to stop funding research. Every bit of research gets us closer to 'functional' treatments like insulin pumps that work with continuous glucose monitors.

But when you are brand new to this game and want to chide me for giving up?

Sister, you have just found the way to press my biggest button. You had best take a step back.

I meet these women in forums for parents of type 1s where I lurk. One recently told all the other parents how she was going to cure her daughter with a restrictive diet. That she'd cured her other child with behavioral/developmental problems through diet. And that she wasn't willing to "sit back and take" the diagnosis like the rest of the parents.

My first thought: These are the parents you hear about in the news. The holistic ones. The faith healers. The ones with the dead kids.

And then I met one.

There we were, myself and a small gathering of moms of type 1s, enjoying some decadent snacks, chatting around a kitchen island during a moms' night out. I was the odd one out being the PWD and not the parent of one. Talk centered around athletic activities and pumps and campouts and blood sugar checks. It was friendly, lovely.

I found myself split off in conversation with a woman none of us had ever met before. She had a daughter who'd had diabetes for a year or two. But despite being a couple years in, she seemed to have a really outdated understanding of type one. She didn't think I was allowed to eat the cake in front of me because it had sugar. She had never heard of an insulin pump or a cgms. I was a little taken aback at how little she knew with a type one at home, but hey, we were all there at the beginning once. I felt it incumbent on me to clue her in.

Then she began to tell me about how a man at her church had been cured of his type 1 through his faith.

"No, I'm sorry, that didn't happen," I said. There was no mistaking my tone.

She began to stroke my arm and stand a little too close. "You may not want to believe it, but I believe it. I believe that God does miraculous things and that he healed that man."

"No, I believe you misunderstood that man. He did not have type one diabetes if he no longer needs or takes insulin. He was likely a type two on insulin and was able to stop taking it."

She stroked my upper arm, longer, harder. With both hands. It was like she was inside my skin. "No, no, I really do believe it. The Lord will heal you. You just have to believe."

I was among friends who were believers of various faiths. In a Christian friend's home. With a Muslim friend standing on the other side of me. This was neither the time nor the company for me to declare my personal thoughts on any of her assertions about faith and Jesus.

But my thoughts on diabetes are more than personal. More than a matter of perspective. It's goddamned science. It's fact. And you don't get to have your own science.

I yanked my arm from underneath her heavy petting and growled "STOP TOUCHING ME" through clenched teeth. I shook her off - literally and figuratively - and continued trying to press my point that this was a dangerous game to play with her daughter's head and that it was a horribly insensitive point to try to make in a room full of mothers who, I dunno, I guess just don't love the Lord as much as that random guy who didn't make national news with his miracle cure.

I removed myself from the conversation enraged. I'm sure she could hear me ranting and shouting to the other moms as she said her polite goodbyes to our hostess in the foyer. I drove home in the night shaking with fury.

You don't tell people that diabetes - of ANY type - is in our lives because we don't try hard enough. Because we don't want to rid ourselves of it. Because we don't eat the right things or pray to the right gods or because we buy into the Big Pharma schemes. Who are you to claim that degree of insight into a disease so few doctors and researchers even understand?

And you don't dangle the C word in front of us like you're clairvoyant and we're just blinded by a lack of imagination. I will smash the crap out of your crystal ball. And probably use the shards to check my blood sugar.

14 comments:

  1. Love This >>>>"It's goddamned science. It's fact. And you don't get to have your own science."
    Her poor daughter. Look Im all for faith if it works for 'you' (I mean them or you or both or anyone) - but faith will not cure my kids. Sometimes I miss my faith and I think things would be easier with it by my side but it won't cure my kids and sadly wack jobs like that lady (although Im sure its out of desperation or a lack of proper pharmaceuticals) will do harm to their children and possibly others.
    Great Post Mel - can I call you Mel - I really want to but I won't if you prefer Melissa. I feel like if I call you Mel it wont matter we haven't met yet - I still consider you a friend. Hugs - and oh ya - ewww with the excessive touching and petting.

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  2. Oh DUDE.. this is a phenomenal post and I love the way you told the story.
    Really really.... thank you for sharing my friend.!

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  3. As you know, you and I are so on the same page with this. You have far more patience than I do to lurk in parents' forums. Having wandered into a few, and offered my take, "supporting research is good, but instilling a belief that your kids will be cured is going to crush their spirits when they figure out you've all been grossly misled," ... well, people just don't like my version of reality. I'm glad I've got you as a companion in this reality.

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  4. This makes me say, even with the irony: JESUS CHRSIT ALMIGHT!Y!!!

    That poor woman's child. And poor you. Creeeeeeptastic, that was.

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  5. I'll be honest...I *do* believe that in some random, inexplicable , EXTREMELY RARE cases, the immune system can start cooperating and the beta cells can re-grow. I remember someone on TuDiabetes claimed to have this happen about a year ago (quite convincingly, though I haven't followed up). I was told of this possibility at diagnosis, but told not to get my hopes up over it.

    But having it "magically disappear" would be more of a random, freak occurence than it appearing in the first place. And neither God nor Jesus had anything to do with it...my own opinion anyway.

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  6. Wow.

    I'm not sure I'd know what the heck to do in that situation.

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  7. This is great. I've seen that "I love God so much that he cured my disease" situation come up in people with Celiac, including a family member.

    I mean really? God's all upset that you can't eat pizza crust, but he's cool with children dying of AIDS and cancer and suffering from countless other maladies?

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    1. This comment made me snort. Thank you.

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  8. This sounds vaguely familiar :|

    Has she ever popped back up again? All I can say is that I'm glad I know what to do/say when this happens again.

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    1. I think she started her own group. Yeah, that was uncomfortable to say the least.

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  9. OMG, wow. I don’t know who you are but I think I love you! This is exactly, exactly how I feel. This is EXACTLY why I don’t talk about “the cure” around my daughter (13, and T1 for 3 years now). This is EXACTLY why we PLAN for a full life of diabetes; meaning both her whole life, and that she will have a wonderful, FULL life even if diabetes is on board for the whole of it.

    And I have to know who you are at some point. My daughter is also a singer, and I bet she’d love to hear from you.

    You totally made my day and made me really mad (again) at the same time.

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  10. One of The PWD community ruined his reputation with many of us, even the ones who knew he was not announcing anything spectacular. So it may work in MICE??? Really??!!!?!?

    I agree w you wholeheartedly. I live with T1D. Not perfectly, not happily, but with a drive to do my best every day. I may die with this, but I won't die from it. That's all we can do right now.

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  11. Glad you shared this. Can we start doing the Dana Carvey Church Lady voice every time we run into these folks? "Who made you get diabetes huh? Satan!"

    I worry for the child with T1D whose insulin needs are viewed as a lack of faith. Give me a break. We all want to believe in a cure. We certainly wish we could pray the diabetes away. Then we check our BG and it is 500 and we think, "Maybe a dose of insulin and reality would do me good after all."

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  12. I have tremendous love for this post. Particularly the intersection of hype, hope and faith.

    It seems to me that god would be very petty thing indeed if as a reward for righteous piety autoimmune conditions changed. It would be so clear then who was good and by extension who was bad. I suppose the very very good would never get it in the first place, which would make those cured less initially faithful but capable of redemption. That would make those uncured capable but unwilling of redemption. It would all be crystal clear.

    Nobody would have any freedom or reason or even ability to choose this petty god. Without choice I don't see how there can be love so nobody would love the god we would all just feat it.

    I think spirituality is a process within, to choose no because we have to but because we can. We can choose empathy or self-pity. We can choose to help our neighbor succeed with life but extending a hand. - or - we can sow doubt and disapproval on their spiritual worth by implying some petty god hates them for not sacrificing their child to superstition.

    That last bit sound hellish to me.

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