Several years ago, I was quite active with my local JDRF chapter, something I’ve mentioned in the past. I initially contacted them because I had hoped to find some local support, and thought starting a support group would be a good means of achieving that. I called them, told them what I wanted to do, and shortly thereafter, I was invited to join the Outreach Committee they were starting. I joined, but all the initiatives were really designed for kids and parents. To be fair though, very few adults contacted my local chapter in the time I was active. The whole issue of T1 adults and JDRF is a complex one, one about which I’ve written in the past in a few different posts, and one that is what I would call a recurring theme of discussion amongst many adults with T1. There was actually a post on JDRF Talk, the blog of the Bay Area JDRF, earlier this week about it, which I found especially pleasing because it’s good to see people in JDRF acknowledging and trying to remedy the problem. I know not everyone sees it as a problem, per se, but I do because that’s been my personal experience.

When I was a familiar face at my local chapter, very few adults contacted them. I exchanged emails with maybe 3 adults, certainly no more than 4 in the 2 years I was actively engaged with my chapter, none of whom wanted to meet in person. Eventually, I unofficially and unceremoniously parted ways with JDRF. There were very few adults who were active in the chapter. Off the top of my head, I can only think of one lady from whom I consistently got a why-are-you-bothering-me vibe. No one over the age of 20-something was coming into the chapter. I became bitter that everything was designed to meet the needs of kids and parents, and ultimately felt even more alienated than I did before I joined.

The Only Cure I'll See in My Lifetime

I also couldn’t stand to be around the constant talk about The Cure – and I don’t mean the band that I adored as a teenager and saw in concert some 20 years ago. As the Family Teams Chairperson, I had to encourage people to donate money because I supposedly believed there would be a cure and we were “so close” to it. However, when I said anything like that, I felt like a liar, as if I was purposely misleading people. If I didn’t say it or gingerly tip-toed around it, it felt like a lie of omission. I wasn’t going to be the one to tell them that while it’s important to support the efforts to cure it, it isn’t anything you want to hang your hat on because the disappointment of not seeing it within whatever time frame you’ve constructed is pretty much unbearable.

Even if I wasn’t personally trying to convince other people of JDRF’s mission to cure diabetes, just being around so many parents who really thought their kids were going to be cured sometime in the foreseeable future was too heart wrenching for me. Every February, the chapter has an ice hockey fundraiser, one team of guys from the chapter against a team of retired Flyers (Philly’s NHL team, in case you aren’t familiatr). The event is actually a lot of fun, and I do think donating to JDRF is a good cause, in case you’re getting the impression that’s not the case. We haven’t been in 2 or 3 years, but the man who organizes it was sure there would be a cure by 2009. Before the game started, and he gave his welcome-thanks-for-being-here speech, he’d have a big “2009” banner. The last time we went, remembering that he had held up the same banner the year before, Jason leaned over to me and asked what they would do when 2009 rolled around and they were still without a cure. I inhaled, made the face I make when I either don’t know the answer to something, or have to deliver bad news, and responded, “I don’t know.” I kind of want to go this year for no other reason than I’m curious if they’ve picked another random year that sounds kind of far off, but really isn’t, or if they’re just skipping the whole crystal ball/wishful thinking bit.

In the end, maybe it’s selfish, but it’s painful for me to be around that. I hurt for the parents who will eventually realize the cure they honestly believed their kid would get before they blossomed into adulthood isn’t going to happen. I hurt for the kids who think 5 or 10 years is an eternity, and similar to their parents, believe they’ll be cured, and the insulin injections or pumps and never-ending fingersticks will actually come to some climactic, fantastic end. I hurt because I remember sitting in the car with my mom when I was 9 years old, knowing that the 5 year anniversary of my diagnosis was fast approaching, remembering someone told me there would probably be a cure in 5 years, and telling her very matter-of-factly that I would be cured soon. What can I say other than it really hurts to think about that conversation I had back in 1982.

Thus, I have a lot of mixed feelings about JDRF. I wouldn’t call them bad feelings, but maybe ambivalent is a better descriptive choice. Regardless though, just because they didn’t meet my particular needs when I was volunteering doesn’t mean I don’t think JDRF does a lot of good. I was recently encouraged when I read that they’re developing initiatives about Life with Diabetes that will have elements that are specific to adults with T1. I hope this represents a long-needed shift that will eventually result in more opportunities for T1 adults to get involved with JDRF and connect with one another. I hope it represents a shift in the level of interest T1 adults have in the organization at all because as it stands, I think it’s fair to say that a good many T1 adults don’t perceive JDRF as representing them. I know there are a lot of organizations than there used to be that are focusing on us these days, but to have some of our needs recognized and met by JDRF would mean extra support in our corner.

Although JDRF has not thus far been the go-to organization for T1 adults, it is the long-standing to-go organization for parents of T1 children. Since I’ve been trying to make connections in my community to dispense the word about the art therapy groups for kids and teens I’m running, JDRF seemed the obvious place for me to go. I had made some attempts to contact them, but hadn’t gotten a response, so I contacted national headquarters, asking them to help me. A few days later, I had a voicemail from the director of the local chapter, so last week I popped by the office for a visit.

Everyone was out except for one of the event coordinators, but she and I had a nice chat. She told me they’re moving to a different office in the building, and showed me the new space. I asked her about the Life with Diabetes initiatives, and she told me a little about it. She also told me about some opportunities to volunteers, including the possibility of doing some kind of art activities with kids participating in the Promise to Remember Me campaign. We also discussed the upcoming Outreach meeting which was actually this past Monday night, and I told her I’d be interested in speaking at one of the future meetings. She took some brochures, so hopefully the art therapy group information will soon make its way to area families with T1.

Monday night, I went to the Outreach meeting. There were reps from Omnipod, Minimed and Animas. I chatted with some of the parents I knew from when I had been involved a few years ago, including the mom who coordinates the Outreach meetings, and she seemed really interested in having me speak at the meeting that she intends to schedule for February or early March. I also chatted quite a bit with the two Animas reps, both of whom are T1 vets.

The whole networking thing really takes me far outside my comfort zone – far, far outside – but I don’t think anyone can accuse me of not at least trying. It certainly makes me feel like I’ve accomplished something, even if the results I’m seeking haven’t come to fruition. I will persist though because there are an awful lot of kids with T1 diabetes, and most, if not all of them, can benefit from a little art therapy which I’m determined to bring it to them.