Let me preface this by saying that I'm grateful to have been one of the thirty-ish people invited to attend. I didn't have to pay for any of my travel expenses to get there, for my hotel stay, for the food I ate while there, for the minor league baseball game that the majority of our group attended, or for any of the goodies in my swag bag. It makes me feel incredibly lucky to have the opportunity to do something like this, and I remember well how it feels to be on the outside of what can sometimes appear as a "party with my friends". I've been in a near-continuous state of amazement for the past two years that anyone cares to know what I think about anything.
Some of the discussions at the Summit had great benefit, both for Roche and for those members of the DOC. The speakers Roche brought in were phenomenal. The brainstorming we did produced some productive ideas - at this point, still just ideas. I hope they blossom into something more than just words.
Advocating, at its core, is about people. It's about relationships. It's about striving for better outcomes and health; for helping things to get better for us, and for others. People choose to advocate in ways that are comfortable and meaningful for them. They do what they can with what they have, and often strive for better than that. That's how it should be.
When I found the DOC in 2009, the "people getting invited to stuff " thing was already the norm. Relationships between influential patients and pharma companies had already begun to form. While these events (and who went to them) weren't what I was mainly concerned with (and still aren't), they were on my awareness radar.
What I've been grappling with lately, and what I hope you'll pause to consider along with me, is what I perceive to be a shift in priorities. I think it's good to have events that bring patients face-to-face with both each other, and with those whose business it is to provide the market with tools and options that can help patients manage their health. What makes me uncomfortable is how we do that., and it's a two-fold dilemma.
The first is how these events are handled. Was it lovely to be able to stay at what was probably one of the nicest hotels I've ever been in? Yes. Was it likely the best use of Roche's money? Perhaps not. What if we bare-bones this thing? What if we all stayed at a Holiday Inn and used the surplus to do some social good - donate it to a charity, pay for some sort of community-enhancing effort, funnel it into a patient assistance program? Would we still be able to accomplish something; would we still have those same conversations? I sure hope so.
I hope I'm not the only one that would go along with this idea.
The second part is less easy for me to articulate, but I'll try - with a hat tip to Louis C.K.
"Everything is amazing, and nobody's happy".
I want us to remember this phrase when we worry that our blog hits, Twitter followers, or pageviews aren't "high enough".
I want us to remember this phrase when we are so ridiculously lucky to be at an event that so many thousands of others can't afford or weren't invited to, and choose to complain, in a space where so many of those thousands can see, about how bored we are.
I want us to remember this when we don't get the reaction from others that we think we deserve; when we become frustrated with technology; when we believe that the world owes us something simply because our lives and health are not in line with what we expected.
When we do these things as advocates, I hope we can check ourselves (before we wreck ourselves): does this go back to people, or is this just about me?
Do you know how lucky we are to be on this Earth, right here, right now? We have machines that can connect us, FOR FREE, to millions of people all over the world - and we can talk about whatever we choose. We have tiny computers that can fit in the palm of our hands, which by some combination of magic and science can tell us what our bodies are doing. We have insulin to keep us alive. We can consume tiny bits of medicine that help our bodies function. We can use a seat in the sky to get us anywhere in the world we want to go. We are here - NOW.
We have language and the means to use it to comfort, console, inspire, and enlighten each other. For as much as there is wrong in the world right now, there is so much right. There is so much good. And when we focus on each other - on what we can do to love and help others - we can become something much bigger. Much better.
We have each other.
I hope you remember how amazing that is.
I cant log into blogger from work but its me ;)ReplyDelete
AWESOME AWESOME AWESOME POST!!
I think we could all use this reminder daily.
This is how I have been feeling all week:
Advocating, at its core, is about people
You nailed it.
You are amazing! So well said. It's easy to complain. It's easy to not be happy with what we have. But in truth, we are so, so blessed. Could it be better? Sure. But appreciating what we have in every aspect is something that we should all do. And like you said, this whole thing is really about people. Until we remember that, what good are we really doing?ReplyDelete
1. I'm so linking this on the CB forums. Especially because of this part: "when we believe that the world owes us something simply because our lives and health are not in line with what we expected." It's something we've delved into with formal chats, and it's important to remember.
2. As I've mentioned, I organized key customer tours for a med device manufacturer and shyed away from the first summit as a result of knowing how much money gets poured into such an event instead of for the greater good. I still don't know how/why my view shifted, or if it was just "missing out" mentality.
3. And yes, I'm guilty of saying I was bored at points, but I turned it around later and realized the worth of the information to the others involved. (Think before you tweet?)
I love this post!ReplyDelete
I agree 1000%ReplyDelete
Great post, Kim. It all boils down to making the best of whatever your situation may be. Sure, I voiced a couple of concerns within the confines of our group but, in the end, things worked out ok. And I'm so glad we finally got to meet in person. :)ReplyDelete
Great post, Kim! I vote for the Holiday Inn idea. Advocacy and making a difference shouldn't have anything to do with location, but instead, it should just be people who care talking about ways to make a difference.ReplyDelete
I appreciate you and all the others who attend such summits. Thank you for being our voice...and a fantastic voice at that!
On the bare-bonesing it: Spoken like a true start-up person. You've been working so hard on YCDT, you know how important even $100 could be to some worthy cause or struggling person. (Similarly, I've always thought people should be required to work retail or be a waitress so they know how crappy those jobs are...and would tip better and not leave dressing rooms in horrible disarray.) Spread the good word, sister.ReplyDelete
On everything being amazing: Not a day goes by that I don't think "Holy hell. If it weren't for all the medical miracles I use every single day, I would have died 18 years ago." Humbling to think that I've already lived well beyond my natural life expectancy. Makes a girl grateful for everything.
I love you so hard.ReplyDelete
kim, this is brilliant. absolutely brilliant.ReplyDelete
do events like roche have value? absolutely! i think it's important for the pharma companies to hear from their customers.
but it certainly makes things prickly. being at the medtronic forum was one of the biggest honors of my life. was i disappointed to not be at roche? of course i was. because i wanted to spend time with my friends. almost everyone in the DOC wishes they had been invited, i'm sure.
we're all human. and part of that humanity includes selfishness and a desire for attention. we want to be known. i worked through my disappointment, and focused on the fact that it's not about me.
it's about us. it's about the power of the community. yes, i am a part of the community. but the community comes first, not me. i think we all need to be reminded of that sometimes. thanks, kim. <3
This past week has been incredibly inspiring for many reasons. I'm so thankful to have met people like you and I'm excited to put my recharged batteries to work.ReplyDelete
I love this positive perspective. Thanks for articulating something that I've been feeling.
Wonderful! I hope your words continue to reach untold numbers of people.ReplyDelete
I'm trying to figure out how to respond....not something I always do as I tend to lurk more than talk. I love the sentiment behind this post. I think it's great that you and Kerri (and maybe others?) have posted about similar issues after attending the Roche Summit. And I'm trying to figure out how to state my opinion without making it all about me. It's tricky.ReplyDelete
I've never owned a smartphone. I was lucky enough to wear an insulin pump (and the insurance to supply it) for a year and a half, and I am grateful for that. I am grateful that I make enough money to afford insulin (albeit in the form of MDI, which I loathe) despite being uninsured. I'm grateful for an incredible life that I live. But, I wish I could afford the best quality of life (in my mind, right now, that means pump supplies). I wish that for all people, not just myself. Certain things are amazing. Certain things aren't.
(I feel so whiny and complainy writing this, and I'm not really meaning to be. It's just my two cents.)
Jasmine - thank you for leaving a comment. Your point is a very valid one.Delete
Yeah, I tried to say something like this last week, but I've refrained from talking about other bloggers much because I haven't been blogging for very long myself. And if I do, I want to be positive. It takes guts to write about so much of our lives, even if we do like to talk about ourselves (or is that just me?). So what's the point in being negative?ReplyDelete
I'm one of those that believes these events are largely marketing efforts by wealthy companies who hope you'll love what they do and write about it. But that doesn't mean that great things can't happen within that context. If these meetings are (excuse the business-speak) leveraged for a bigger purpose, I think it's fantastic.
Right now, I'm just happy to contribute in my own way. I'll worry about what I go to or don't go to some other time. Thanks for your thoughts and your efforts.
Nicely stated, Kim.ReplyDelete
Awesome post, Kim! I enjoyed every minute of Roche, and being able to hang out with you twice in ONE month was CRAZY COOL!!!!ReplyDelete
Thanks for the reminder...life is awesome. I hope I can find a way to brand those words into my heart, and never forget them
You know how I feel about this post. And you have absolute permission to remind me anytime I begin to forget!ReplyDelete
I love this post Kim. I'm totally down with bare-bones'ing effort. Good comes from these meetings, and they inspire great ideas from great people. Marketing? Yes. But there is so much more than that, too.ReplyDelete