Tuesday, December 4, 2012


Ha! So, remember that posting once-a-week thing? Yeah. That didn't happen, considering I last posted on 10/30/12, and here it is 12/4/12.

Well, once a month (almost) is better than nothing... ?

It's been a BUSY, crazy, unexpectedly wacky-pants month. I am still adjusting to this new gig, and I am just not sure how I feel about it, hence today's post-title of "Feelings," which, when referenced, must be sung like Beeker. Here: let me show you, for those of you who do not immediately get the reference:

Got it? Ok, good. Now we are on the same page.

So, I started working for this super-duper, well-established diabetes research organization in September (name not included very much on purpose). I was very sad to leave my library position, but excited to be challenged with the new job; I knew, bottom line, the job would help me with my resume (especially if I wanted to get back in library work at a higher level), as well as allow me to work in a field about which I am incredibly passionate. Win-win.

I started to work. The hours are incredibly demanding, which didn't bother me: this is obviously a challenge, and I will rise to it. But, the culture of the office is... different. I've always worked in places where coworkers have been somewhat like family: not only close in proximity, but close to one another personally. This office is different. We hole up in our offices each day, clicking and clacking away at our computers, communicating mainly via email. There's a lot of judgement when we do all come together for meetings and chatting, and quite honestly, I am not sure I trust anyone yet because of all the judgement. I mean, what if people judge my clothes? (Petty, I know. But, this is what I am working with.) Judge my questions? Judge my new-ness and my mistakes pretty harshly? (After all, I am new.) And, yes: judge the fact that I have type 1 diabetes. Do they judge how well (or not well) I take care of myself? (I've already gotten the "You can eat that?" and "Are you low?" questions.) Will they judge me based on the fact that yes, sometimes I need to be out of the office for doctor's appointments more so than any other person in the office?

[As noted,] I have already been judged for these things, and it feels... crappy. Well, maybe I haven't actually been judged, but it sure FEELS that way. And, when I start to feeling something, I am hard to wrangle. I'm doing my best to stick with it, and put my head down and dive into the job challenge because I do hope that things and people will improve, and some kind of mutual understanding and genuine respect will develop.

But, there's just one other thing.

This past week, I traveled to Chicago for a meeting of mostly muckety-mucks and the people that work below them. There was a lot of rah-rah-rah-ing, and a bunch of talk about "metrics," "materials," and "marketing." I tried to go into it with an open mind, putting the last few weeks of icky feelings behind me. I saw it as a new beginning, and a way to get to know some people outside of my office.

And, then.

Then, at the first morning breakfast meeting, with well over three hundred people in the room, the CEO and VP of Marketing and Communications unveiled a new packet of information to circulate to donors. The packet sums up where the money we are working to raise is being allocated. The Artificial Pancreas Project? Yes. They even had a gentleman Skype in who is on a prototype and seems to be loving it. Pretty moving, indeed! Encapsulation? Yes. Glucose Responsive Insulin? Yes. Prevention? Yes? A world without diabetes? Yes.

Here's my beef: It's not that this super-duper research organization hasn't had a handout of "strategic directions" like this before (though, you think that would have been the first thing I received when I walked in the door to interview), but more so that the packet of info describes "Billy hating to do finger sticks," and moms and dads worrying through the night. It explains the "burdens" of type 1 diabetes, and the millions of dollars that is required to work towards the elimination of any possibility of this condition in anyone, anywhere, at any time.

OK, so I still have not gotten to 'le boeuf.' I guess my big hangup is... We know. We know what and how big a burden, pain in the ass, anger-and-tears inducing, craptastic voyage type 1 diabetes (or any type of diabetes) is. I'm not so sure you need to write that all out for donors: just bring a person who lives type 1 with you to present and call for funding. I doubt someone will say "no" to that kind of call. I don't want to "do" finger-sticks. I want the weight of worry off the shoulders of my loved ones. I want zero complications, and about ninety-million carbs and seventeen servings of Chinese food for breakfast just 'cause I can, like you mention in your fancy-schmancy new packet. But, I don't want more verbiage.

This is not to say that I am not forever grateful for this super-duper org, and to their past marketing materials, for helping push new and better therapies through the FDA toward approval. This is not to say that I don't recognize that it is going to take millions of dollars, and some considerable time to make some serious changes in the world of type 1 diabetes, and they are at the helm of this fundraising effort.

But, it is when they turn around to me as I explain this, and say, "We are a research organization. We don't necessarily have the capacity for full-fledged advocacy," that I get MAD. What if you read or listened to the voices of many? Isn't that research? Listening to others who live and care for those with this condition (apologies for those who use the word "disease"... for some reason, that word just feels oogie to me), is a pretty essential part of research, and to me, donor relations, and therefore: fundraising. When they turn around to me and remark that there might be more "connections" in the DOC (meaning emotional connections), but that kind of therapy is not mission-based and they "can't" pay attention to a whole community of knowledge and sharing and help, it makes me so sad inside (cheesy, but true). It makes me feel deflated. Defeated, too. I feel judged for my participation in the DOC. I feel judged for advocating for and contributing to it. I feel judged when I talk about what other research houses are doing, and what people all over the world are talking about. What if, instead of fighting for dollars with other research houses, and laboratories, you collaborate with them? What if you were a little more transparent with your research, and got some "laymen" input about it?


I know that organizations exist-- even non-profits-- because of some kind of profit, because of some kind of capital generation. I just think this org is for realz missing out right now. I took the job to rise to the challenge,  to connect to some more people, share information, and to see if I could shed a different kind of light on this type of work.

In Chicago, my boss said to me that maybe I should "just have a goal of fundraising in mind instead of feeling so much" whereas the rest of the staff should "think about what living with type 1 is like." Sure. I think that is a great set of goals. Problem is, I am not so sure the staff wants to know much of what living with type 1 is like beyond the verbiage in the packet. I'm not so sure they want to become a little family of respect and friendliness about type 1 or anything. And, I am not so sure they want that with me in particular (which, I have to say, feels kind of bad). I haven't witnessed that they really want to listen and empathize, or at least try to, at all. They want to go to work, do a decent job, chit chat at work, measure performance and metrics and spreadsheets, get paid, and go home at the end of the day. Who wouldn't want just that? And, not for nothing, but that is what this job calls for. I now know that.

I guess I am not so sure this is the right fit for me, nor I for the job. Are my feelings just getting in the way? Am I not seeing the forest for the trees? And, how the heck do I start to wrangle these feelings of mine?


  1. UGH! What a craptastic situation. First of all, never stop feeling! If we aren't passionate about a cause (no matter what it is) we aren't going to fight tooth and nail for it. Secondly, I HATE it when orgs get caught up in the money and forget about the people they are doing all the fundraising and research for. Yes, I'm beyond thankful for the millions raised to make the future for my daughter better, BUT if you don't give a rat's ass about her as a person then what's the point? If you aren't meeting the needs of those living with this insane condition in the here and now, then they might not be around for the amazing things your funding puts out in the future.
    Good luck!! (sounds kinda hollow, but that's what I got!)

    1. Thanks, Denise! I will take your advice and NEVER stop feeling :)

  2. This breaks my heart. Not only for you, but for the diabetes community as well because if they cannot connect to an advocate who has proven their love and given their career, then how are they going to reach the PWDs who don't want to make a splash in the world, but still care?

  3. The video made me laugh. Which I guess was good because the rest felt so messy and confusing.

    I am not going to even try to give you advice. In a perfect world there would be more of a balance. So this organization - who ARE their primary donors? Is the message different for people with diabetes and people who just have deep pockets? I'm not sure *I* want those messages but would they convince some rich dude to fund a study?

    1. Exactly, Sara. I recognize that the verbiage may be important for some, but it bugs me that this org claims to be "the face of diabetes" (well, not word for word, but you get my point), and yet they don't really "get" diabetes. It seems to be more about deep pockets and allegiances, than about actual progress.

  4. Kate, sorry you're going through this. Oddly, I was just thinking about this today... why is it my local chapter always wants to engage me, but when I mention social media or my blog I get... silence?

    Trust your gut... when we feel things, we feel them for a reason. Usually it's the right reason.

  5. Thanks so much for your words of support! I agree: I'm feeling these things for a reason. Thank goodness for y'all, DOC.

  6. Thanks for sticking that song in my head. SHUT YOUR FACE!

    I have to agree with Sara - what a confusing mess and a crushing disappointment. I hate when what you see behind the corporate curtain doesn't live up to the outside appearance.

    My first instinct is to trust your gut. But emotions (and disappointment) can really confuse things that way, and make your gut not such a great judge. Know what I mean?

    Maybe setting a deadline, like three months, to see if things still feel the same after you've adjusted some more? I don't know. Hard stuff.

    But you're a super smart woman with a ton of talent and skills. You'll figure it out. Might take longer than you'd like, but you'll do it.