Wednesday, July 18, 2018

WEGO Health Awards

I'm not sure which one of you did it, but whoever nominated me for not one but two WEGO Health Awards (Best in Show: Blog and Patient Leader Hero) -- THANK YOU!

Some beautiful soul named Rhonda had this to say:

 Jen isn't "just" a patient leader hero. She is THE HERO of all time! The energy Jen gives off is welcoming, wise, & w/ those things brings a level of comfort. You don't have to chat w/ her long before realizing she is INCREDIBLE. From a *terminal* cancer DX to navigating parenthood & autoimmune disease, Jen is here. Sharing. Loving. LIVING. <3   — Rhonda

It means the world to have my work here recognized. As I change yet another diaper or wash another bottle (how do the dried bits of formula get so glued up into the nipples, anyway?!) and feel like I'm not doing as much advocacy or policy work or writing as I'd like lately, it made me a little teary-eyed just to be nominated.

To be fair, we also went on vacation last week, where I was still very much changing diapers, just with prettier views.

I've got to figure out a way to advocate from Hawaii...

In the meantime, here is a truth I've learned, and I think the attribution goes to Madeleine Albright: as a woman, you might be able to have it all, but not all at once. You can go on vacation to celebrate a friend's one-year cancerversary, you can have a kick-ass career (or so I've heard), you can have children and/or pets and be a good mom to them, you can volunteer for organizations that make your heart sing, you can cook homemade meals every night, you can write a memoir, and you can run marathons or hold a handstand in yoga. You just cannot do all these things at once.

Especially don't try to do a handstand while making dinner. You are not Dr. Seuss.

Because this advocacy work (and stay at home mom work!) isn't often paid, and because my husband has a job that expects him to be in the office (the gall), I can't say yes to every opportunity. As much as I'd like to learn more about the science of breast cancer or how to be a better advocate or lend my voice to try to talk some sense into Congress, it's not always feasible, with a 7-month-old and a 7-year-old to take care of. To be honest, I have felt wholly deflated more than once this year because I've had to turn down pretty incredible experiences due to a lack of childcare.

And then the one conference I did attend, I missed the dickens out of my kids. Ah, parenting.

But also, those who say they want to hear and incorporate patient voices could be better about compensating patients, am I right? At least cover some costs so more of us can participate? (Huge shout-out to the team at HealtheVoices here). As for the rest, a woman can dream.

My point is, I wish I was doing more in this space but my efforts have been temporarily curtailed by a peanut named Noelle and her big brother. They demand (and deserve) the majority of my attention for a bit. So it makes me even more verklempt at these nominations because this year has been such a different kind of challenge. Turns out, parenting is exhausting even if you're not also being treated for cancer.

If you have a moment, please consider endorsing me for one or both nominations. I appreciate it -- and you all -- so much.

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