Some recent memes, videos and Facebook posts have me thinking:
Can we motivate the world to want to help us cure diabetes by making them smile and cheer rather than cry? Or to put it more simply: Can supporting hope be happy?
This thought goes way back for me, actually to nearly the beginning of my involvement in the research/cure community. Lauren was only about seven and she’d been asked to participate in a JDRF Gala video shoot. It was a really fun day – warm and clear and we spent all day on the beautiful grounds of Wellesley College. I got to chitchat with other D-moms (one of my first times!) and Lauren got to frolic with other kids.
But when I saw the video at the gala, I was kind of surprised. Because it was sad. Really, really sad. Now, one might ask: why would the mother of a small child who’d recently been diagnosed with an incurable disease that would demand –at the very least – a lifetime of constant medical intervention be surprised a fundraising video would be sad? Because – and I honestly mean this – I found what my daughter was doing inspiring. I found how my family was rising up to it incredible. For me, my motivation came from positivity. I wanted to change her world because she was being so damn great about dealing with it.
So I raised my hand and volunteered to write, direct and produce the video the coming year. I made it happy. The message was joy. And guess what? People responded. And gave.
So that’s why I wonder why we still need to focus on sad. Do we have to make the world cry to make them care? Or can helping them cheering on children and adults with T1D be motivation enough to care?
I remember when Lauren was really little, and she’d just started pricking her own finger and doing blood sugar checks. We were at our beach club and she’d just done one at the picnic table, surrounded by her friends and with me watching carefully from a few feet away. I matter-of-factly discussed her snack choice and then went back to playing tennis or lounging or whatever I was doing. She ran off to jump in the pool or whatever she was doing. A stop, a medical moment and then, with barely a beat missed, life went on. A little while later another club member pulled me aside, saying she needed to talk.
With tears in her eyes, she said this to me:
“Moira. I just watched the most amazing thing. That little, little girl of yours pulled that meter out and pricked her finger and checked her blood sugar and then just ran off and played like it was nothing. I have never been so moved by something in my life. I cannot explain how proud I feel. What can I do?”
That mom, who has no direct connection to T1D, has been an annual donor to our JDRF efforts since that moment. Motivated by the good she saw and the happiness she felt, she tells me often she still holds that memory close.
I think of the people who inspire me to work harder and do more. Like Kelly, who is so funny and so brave and so “in your face!” about all this. Or Kim, who is expecting her first child and handling it like a boss. Or Sara, who taught me the magic of the low carb Mojito and who leads by example every day. Or Kerri, who not only rocks D life but shares some wicked fun cat videos too. Or Brendan, who as a young adult has hiked off alone in the woods for days (while his amazing mom did her best to not worry and celebrate his confidence in himself and his D management).
I promise you: I get the suffering. I see it all the time. (And the newly diagnosed, those who lost a loved one or child to T1D and anyone currently dealing with a crisis … no one expects you to be positive right now. That’s different). And listen, my daughter has suck-face days too. But what inspires me most– and the people who still donate to our JDRF efforts (her own walk team in DC now; my ride effort again this year), is how she’s rocking life despite diabetes.
If I made a video about a day in her life, I’d show her waking up in her apartment, checking her blood sugar, and taking the Metro to her internship on K Street in DC. After, she’d rush back to her campus to take part in a sorority event where there’d be lots of laughing and fun, as well as some food she’d have to bolus for. She’d do that with an ease that most barely notice. She might check and see a high, but she’d figure out a correction and then power on to the next thing: a night class or a study group or, if it’s Thirsty Thursday, a few beers with friends. The day might end with some late night pizza (because yes, she can do that), and then it would all start up the next day. She might have an exam or a long lecture, and she might have to pull out her insulin pen and inject during it (and in one class, when she does, the woman next to her might see that, pull out a pen, wink and whisper “Hey! Me too!” Because that really happened). Those would be the moments of her average day I’d show.
Would diabetes push its way in? Absolutely. No way around it. But despite diabetes, she’d live a full, wonderful, exciting, “normal” day. That would be my message: She’s brave enough to smile through this. You can celebrate that and change her world at the same time. And if they interviewed me, I’d say as much.
I worry about the parents who dwell in a world of “I cannot bear to see my child live with this.” Because until we change things, live with this they must. And whether we believe it or not, our children pick up on what we feel. Videos of us crying and hating it all; letters and Facebook posts about how terrible our lives are; they seep into the essence of who our loved ones are. Our kid are smart. They know if we think something’s unbearable. And they believe us. Why must we allow this thought when in fact, they can and will live long, exciting, eventful and wonderful lives despite diabetes?
Are there reasons to cry? Yes. Like deaths from undiagnosed diabetes, or from DKA and other things. And like that day here and there when you just cannot take it anymore. We all feel that sometimes. It’s our place to acknowledge it, deal with it and then move on past it once again, if you ask me. So yes, sometimes there is sadness. But for the sake of working toward a better world, I’m all for the message of the powerful hero, the child or adult who is doing way more than the rest of us can ever imagine and doing it with a smile. I’m all about saying “Look at how she rocks this and how we refuse to let it get to us. Look at what we are doing WITH this. Just imagine now, if you help us find a cure, what we can do WITHOUT this.”
Do you think that can motivate the world to care? I want to motivate folks to fund hope, with happiness. We don’t need to be victimized to deserve a cure. In fact, the more we are victorious, the more we are worthy.
But that might be just me.