A Wasted Voice?
I had another one of those ‘what am I doing?’ moments over the weekend. I’ve been reading all about Roche and advocacy and the greater good and I feel like an outsider. It’s difficult to pinpoint my feelings on this, but even as I try to put it into words, I still struggle to see where I might fit within the big picture.
This slice of the Internet started as a venting mechanism. There were no expectations from potential readership. There were no expectations for feedback or interaction from followers on Twitter. I was frustrated and chose a blog as my escape. Clearly it became more than that, but at its core this blog has always been about me. I know that might sound selfish, but the day I start blogging/writing/podcasting/whatevering to meet someone else’s expectations is the day I need to reevaluate my priorities.
I know that coming out of the fun in Florida, everyone would be talking about the same handful of topics for the next week or so, that’s fine. But I can’t help but wonder what my impressions would have been having participated. When got the initial invitation to attend I questioned the logic behind my invitation. I don’t think that this blog speaks to a greater cause among persons with Diabetes and even though an issue like meter accuracy is vital to how I and you all handle your business, I’ve never stood up and tried to make a difference. Does that make me a bad blogger? Am I a horrible advocate? Am I an advocate at all? Am I abandoning my connection with the Diabetes Online Community because I don’t write about things like that?
Of course I’m concerned that the tools I use to keep myself alive and healthy aren’t perfect (or anything close to that). But if I don’t use what little attention I get on this blog to promote the greater good, am I worth that attention?
It’s difficult to discuss this without sounding like a pity party or like I’m begging for attention. It’s none of that. But as my presence and participation within the Diabetes Online Community has increased, I wonder what my contribution is. If Twitter were turned off tomorrow, how would @iam_spartacus be remembered? There are millions of people out there living with this disease, and plenty more that don’t even know it yet. Am I wasting my voice if I don’t use it to support those without one?
“Am I abandoning my connection with the Diabetes Online Community because I don’t write about things like that?”
Absolutely not.
I wasn’t invited to participate in the Roche summit, and I didn’t attend the CWD FFL conference. If I was asked, I can’t say if I would have attended
For me, there is something very “cliquey” about the DOC. I don’t mean that as a criticism so much as just how it is. I can picture us all walking down the halls of some no-name high school – the preppy kids, the jocks, the artsy crowd, the misfits, the cheerleaders, etc. You get the point.
But, unlike high school, we all have this one common bond. We all have diabetes. Just because you don’t fall into a specific group, or even what is considered the “desirable” one, it doesn’t mean your voice is any less valuable.
I’m still a part of this community, but I write what *I* want to write. On my blog, I vent and complain about this life with diabetes. I also talk about my victories. I even advocate from time-to-time. But above all, I don’t censor myself or temper my opinions (of which I have many). And if I don’t feel like writing, I don’t write.
I don’t think you should ever question what you should write about. It’s *your* blog. You report to no one.
I respect and appreciate that you blog only for yourself. I only read blogs that are honest and from the heart. If you answered to anyone, even your readers I doubt as many people would read your blog. Apologize to no one, be who you are because you are pretty great and so is your blog.
More than half the time I don’t write about diabetes (maybe 2 out of 5 blog posts a week) and so I sometimes wonder how much of a diabetes blogger I really am. And even having been a very obvious and active advocate in the diabetes community, I still sometimes sit back and wonder, “Who the fuck do I think I am?”
I think Shannon’s association to the D.O.C. being like high school is pretty accurate. There are a TON of PWDs online – and offline – whom I simply don’t know. I can’t know them all. I don’t even try. I have formed relationships with people who want a relationship with me as well, and that works for me. It’s really hard to be Everything to Everyone, and that’s why our community is so diverse, even if we share diabetes in common.
It’s also very difficult, logistically, to have everyone who wants to be involved actually involved. After awhile, you really do have opinions and concerns repeated, especially because we communicate so often together. You may not have been there in person, but some people who read you were there, and what you say has been absorbed into them. We are representatives, so we think of the community as a whole, not just in our interests.
As far as being an “advocate,” well, do you want to be? If you don’t, that’s fine. There are a lot of PWDs who simply take care of themselves. Other people crave the activity. There is no right and wrong. I think the fact you are employed by ADA is huge. Not many people are working on the inside, and just think of who you could start talking to just in your day-to-day life to help bring better awareness about diabetes. Start where you are and grow to where you are comfortable. Don’t compare yourself to anyone else. Do what you do best. There isn’t anything more anyone could ask for or expect from you.
I’m like you, I don’t outwardly advocate for anything, haven’t even done a JDRF walk for years. I started my blog for the same reasons as you, to try and untangle my thoughts about the tens of things I have going on in my life–meditation through blogging. Diabetes was only one of those things, and although I’ve blogged quite a bit about it, I’ve also blogged about everything from (most recently) what to call my daughter’s hoo-ha to what to do about graying hair-down-there.
Is what I have to say really helpful to anyone in any way? No, I’m sure it’s not. But I’ve slowly gained readership (much of it non-d, actually), because I talk about things that are reasonably universal. And that’s why it’s great there are so many d-blogs out there…We read them and we smile or feel sad or scared because we’ve been in that same place and had those same thoughts, and we feel less alone. My blog probably won’t raise awareness or increase funding, but like yours and all the other blogs it adds a voice to the community. And all of our voices are important and alike-but-different. The more of those voices, I think, the better.
Of course, I can’t answer these questions for you. But it seems to me that your place in the community lies in your demonstrated ability to reach those with this often-lonely disease. You’ve mentioned hearing from folks touched by your blog, and I myself have been touched by your podcast.
Part of why I blog is my conviction that we need a multitude of voices because there are a multitude of ears, and different ears need to hear different things. Meter accuracy, the education and numbers of CDEs and the role of diabetes organizations are important issues, but they’re not the only important issues. The daily challenges of this disease are also important issues.
I often try to picture a reader, a Type 2 who struggles as I do with the meaningful lifestyle changes that offer us the best chance of long-term health, a person who has not yet chosen to become an active member of the community. I hope to speak in a meaningful to that person and to help him or her find other voices that will also do so. Do I have any such readers? I don’t know. But from what you’ve said, you do have readers you’re touching. In my mind, that means your voice isn’t wasted at all.
Nearly everything you do is of no importance, but it is important that you do it.
– Mohandas Gandhi
“If u live your Life on other people watch, u will always miss the moment that’s put right in front of u!”
So says lebron James
As A cavalier Fan and a Clevelander, I wanna wring his neck, but his words make some semblance of sense to your situation Chris.
The essence of blogging is rooted in the belief that this is your world in your words and even as we connect with you, we are still just visitors in it.
Do not let other people’s expectations dictate your life.
Ronn
As you know, I’m not a PWD or a D-blogger or even a blogger or twitterer, but I can still see that whether or not you meet the typical definition of an “advocate”, you have helped those with diabetes who read your posts by writing about things that many might be afraid to talk about but no doubt think about (e.g., frustration at a doctor, frustration with getting levels right, opinions on equipment that you have found helpful or not helpful). The number people that read your posts speak to that fact, as does the number and variety of people that you have met and now talk to because of it.
Even if the blog is for you, it has affected others – and the fact that you can be real and still touch others, to me is a much better sign of “meaningfulness” than anything else. You asked if you were “worth the attention”… it seems that many have decided the answer is yes.
Also, as a non-DOC member, I think pure advocacy would be boring as hell to read. just sayin.
You may blog about whatever you want to, that’s why blogs are self-published. That doesn’t change the fact that you are a diabetes blogger whenever you want to be. Your voice isn’t wasted, but you are entitled to have a life, and interests outside of diabetes, too!
I agree with the others, I don’t think that yours is a wasted voice. Like you, I started my blog out of frustration. I was really ticked off one night & couldn’t sleep so came downstairs to my computer & started writing away. I found your blog when I was looking for Dexcom stuff & enjoy reading what you write. Yeah, I like to read technical stuff sometimes to find out what is good & what is not, but I like reading the human side to this crazy disease also. It is a good reminder that I am not the only person in the world on the blood sugar rollercoaster.
I read your blog because you’re a good writer and I relate to the diabetes things you talk about. I generally skip over the video game blogs because I don’t care. But whatever you write, because you write about yourself your blog touches me more than another type of blog would. The end.
Don’t ever question the power of what you are doing. There are many ways to advocate, and you are doing that, whether you know it or not. The power of just sharing your story is huge. Doesn’t need to be anything more than just sharing your story.
I hate that the DOC can seem cliquey. I love everyone, and want go wrap you all up in a huge bear hug. We all struggle with diabetes. Every last one of us. To me, that makes you part of my family. I try my best to get around to as many blogs as I can, but there are just too many to keep up with. That is a good problem to have, IMO.