What does hope look like?
It’s a question I’ve been noodling a lot the past week or so. (Not that hope has not been the theme of my life since 10-28-1997 . . . but sometimes you have to ponder it more). It started like this: the mom of a relatively newly diagnosed child with diabetes posted on a website about a promising “cure” she was going to pursue for her child. I won’t go into details here to protect the mom’s privacy, but the moment I read it, my 14-years of really intense D-Mom education sent up a million red flags. (Side note: since I’m not expert, I emailed a couple of the world’s top experts on the subject the parent was talking about to get their take – which confirmed mine – before coming to any conclusion).
What she was saying just did not make sense. So what’s a person to do? I tried politely pointing the mom to some documented information, but was shot down as a negative voice. And that made me wonder: was I? I mean come on; there is a chance that some random person out there is going to figure something out that changes our lives without having gone through the usual scientific research channels. (Heck – Banting thought up insulin in his sleep. See: the note he wrote when he woke up). But I guess there was a wee bit of prior work to that.
So how are we in this world supposed to communicate with one another in a positive, upbeat and yet honest way about what we know and what we think we know about diabetes and the pursuit for a cure? How can we share new information without being too “New York Post-ish” about it? (“Tree bark cures Type 1!”) or without being too Debbie Downer about it? “That’s not going to work. Ever.”
We’ve all had to face it in the “outside world;” that caring neighbor who tells you, “Oh, you know, there are pills for that now!” or the great-aunt who tells you “My sister was able to get off the insulin with low carb diets.” We even get assaulted by on-line ads for supposed solutions to Type 1 (tree bark, anyone?). One of my favorites was the “Friend” who called me stubborn because I would not take my child to a faith healer. Or the local chiropractor who stopped me at the deli to tell me “two appointments and I’ll have that pancreas working again!” Even there, as frustrated as we may get, we try not to sound like negative Nelly. But it’s hard. No one wants to look like they are narrow-minded or hope-dashing. But should all that happen within our D-world? I think not. And I need to think about how I can be sure I’m being a positive, honest and caring person in this world of instant sharing.
I’ll say this first: In my humble opinion, to quote my daughter in a senate hearing long ago, hope is one of the most powerful “medications” that research has produced to date. There may be studies that have not come to a positive and final end yet, but gosh, when they are moving, even inch-by-inch, to a conclusion that even finds one piece of the puzzle, that’s some powerful stuff. Being able to know that researchers are toiling over reversing autoimmunity is incredible (heck, did they even know that was part of the picture 20 years ago?) Understanding that while the islet cell transplantations done circa 2000 didn’t end up being The Cure but did end up solving a part of the equation (can we take islets and easily transport them into the body of another?) means a lot to me. They may not have solved the dilemma in my daughter’s body yet, but gosh, they sure have given me faith that we are moving forward. So what are some of my “needs” for research as we move forward?
*Don’t put a time line on it. How many of us have not read or been told “there will be a cure in (insert your number here) years?” I don’t like that. Not because I don’t want it – the sooner the better, but because I think it sets up a dangerous chance at feeling like a failure. Let’s say a researcher tells you “Your child will be cured in 10 years.” Ten years later, your child is not cured so you feel all is lost. But it’s very possible that in that time research has ruled out some things (and remember: in research, even a “no” as a conclusion is progress. It took me a long time to truly embrace that). I’d rather skip the time lines and focus on progress. So long as we are moving forward, I’m good (and my daughter will hopefully forgive me for having told her she’d be cured by the time she went to college. Sorry ‘bout that, sweetie. I was young and naïve way back when).
*Do be more clear about where research is at in a program. I know some of it is the media (and I’m in the media so really: I know.) But Do NOT say “we have found a cure,” when what you’ve found is a drug that treats part of the problem . . . in a mouse. Just say what you’ve found. And what the next steps are. Honesty is only going to win us over.
*As parents, do listen to one another if we have documented information to share. If I am told my daughter can be cured with a three-day treatment and another parent happens to know it’s not true, as much as my heart is soaring at the possibility, I want to hear from those who might have true, documented and respected information. And if I know something or have some (real) information to share, sharing it does not mean I’m cruel. It means I’m caring and helpful. Let’s all listen to one another and help one another. Of course at the end of the day, we each make our own decisions on what we think. But I want to be sure I listen to my well-read D-Parents about things.
And if there is not magical cure at a doctor’s office no-one else knows of yet, should that dash our hopes? Absolutely not.
To the newer folks in this D-World, I point to the amazing changes that have taken place in just the last 20 years. Glucose meters and tight control. A vast array of insulins to choose from and to mix to find the best way to treat your unique diabetes situation (and they are all unique). Pumps and CGMS (which are only going to get smarter and smarter). Anyone who use to have to give their small child NPH and Regular, wait exactly 30 minutes and then FORCE them to eat exactly what they’d been given the shot for can tell you: the times they have a-changed.
We can also look toward better and better long-term statistics for our loved ones with diabetes. Blindness and amputations are going to be rare in the future (I believe!). The life-span of a person growing up with Type 1 is getting closer and closer to that of a person without it.
Yes: My daughter’s life is incredibly difficult. Everything: every bite, every move she makes must be studied and planned for. She has highs that make her sick to her stomach and lows that are shaky, scary and dangerous. She has to lug a medical kit with her everywhere she goes. She cannot go a day (or even a few hours) without thinking about diabetes. And I want that changed. I want her cured.
But hope – honest-to-goodness hope based on respected and proven research out there, continues to fuel her and me. The other day while visiting her at college was the first time she told me she’s actually completely pumped (pun intended) about the possibility of the APP coming to fruition. Right now, that’s the hope she can fill her tank on. She also talked about realizing she probably still has a few functioning beta cells, and the hope that regeneration might help create more one day in the future. It’s not here today, but the hope, for her, is here today. And it’s based in reality.
So I guess sharing information, even if it is to disprove something a person might thing, is really a positive step. There is so much to look toward and be hopeful for, and as long as when educating someone on what we know points them to hopeful things, I think it’s not a Debbie Downer at all.
Hope’s not everything, but it’s something. And in my view, it’s better than false hope.
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