Wednesday, June 8, 2011

Why So Impressed?

I've been Living With Diabetes for 27 years, after being diagnosed in 1984 at age five.

My mother has been Living With Diabetes for 53 years, after being diagnosed in 1958 at the same young age.

We both have certificates and medals "awarding" us for these milestones.

Many friends in the Diabetes Online Community and Beyond have been living with diabetes for just as long, even longer, and can be considered "veterans" in many respects. Many mark their own yearly "dia-versaries" that celebrate the specific number of years they've gotten through.

On a broader scale, we have had some recent media coverage about those People With Diabetes who have lived for long - including one man who has reached the 85-year mark and could be one of the first to hit that mark. Others who've achieved the 50-year mark and are participating at in the Joslin Medalist Study recently gathered at the Boston-facility to celebrate their long D-Lives. And Kerri's recent vlog entry over at Six Until Me.

But...

Is it really all that notable? Is it really that impressive that we've been Living With Diabetes for so long? And if the answer is Yes, why is that the case? Why is it really worth talking about, celebrating as an "accomplishment," and sharing with the rest of the world? Are we making this a bigger deal than it really is?

I've been pondering these questions recently, particularly since one of my friends announced an awesome project to talk about this. Kim over at Texting My Pancreas has been inspired by the It Gets Better project and formed a D-version that has been named the You Can Do This project - a way to reach out to those who might think they can't live with diabetes or be feeling down, and know from some of us that you can. That it really does get better and you can do "it," whatever that "it" may mean for you.

I've been exploring my mind and heart about what this all means for me, and hadn't been able to coordinate my scattered thoughts into one cohesive message. Then, a few people in my life posed those questions to me, about why there's even a thought about not being able to or why it's actually so impressive and worth talking about. And that got me thinking.

One email came from my mom:

"Why do so many online people seem to be so impressed by 50-year medalist winners?  Do they really believe that they will never live to see themselves do it?  To me, it's no great accomplishment. I wonder if your friends think they won't live to see it. It's sure not like I did anything special. "

Reflecting on this, and watching the new You Can Do It video compilation, here's what I think about the whole thing. Keep in mind, it's only my opinion and Your Diabetes (and thoughts) May Vary.

We are impressed that people have lived so long with diabetes because we've grown up being told that we would not. Maybe this is based on the fact that so many back in the day, were told that they would not - would not be able to have children, live past 21, have a "normal" life free from complications. If we weren't personally told that, maybe it was just the implication from "experts" that we wouldn't reach those milestones. Being the son of a longtime Type 1, I grew up being somewhat shielded from "cure" talk. But that didn't stop those sentiments from getting to me. From my earliest memories, I recall thinking that I would likely suffer from complications or would die young. As I grew up and became "overwhelmed" and de-sensitized to those possibilities, I rebelled and just did my own thing - probably in part because of that young feeling of invincibility and that "it would never happen to me." But I think something more profound existed beneath the surface: a sense of hopelessness, that if the horror stories were indeed going to happen then how I lived didn't matter all too much. Mind-games won out over A1C and DCCT research.

So much of this Life With Diabetes is mental and depressing. That's an element that hasn't historically gotten much attention, and still doesn't get adequate attention today from the Powers That Be. But I think the natural feeling that comes from this D-Life is that we face mortality at a younger age than many others, those who aren't diabetics or living with some other chronic condition or situation. Some of us deal better and don't get as far gone, while some of us slip into those depressive funks for longer periods and can get lost in the hopelessness.

I did for many years. For a long time, my attitude was "Why bother?" when it came to diabetes management and it just didn't register as something that really mattered to me. It was about living in the moment, the future consequences be damned because I didn't want to be overwhelmed or burdened with the depressing thought that I wouldn't be around to achieve my dreams or see much of a future.

When I was younger, my writing was poetry and creative writing - either very emotionally depressing or fantasy-based based as a way to escape. That was the case throughout high school and into my college years, and it really wasn't until I saw a bigger picture and a reason to live that I was able to adjust my mental view. Honestly, it was seeing my future materialize in the eyes of a special woman that made me see how selfishly-destructive my D-Life attitude had become.

That was before the D-Community and a whole new world of support came into existence, which fueled that feeling of not being alone even more and made the daily burdens even more "normal" and "easy" to cope with, knowing that others were doing the same thing and achieving amazing things.

Yet, through all the years and whether it was a "good" time or not as far as D-Management, it's basically been a matter of just doing what needs to be done. It's really not that big of a deal to us personally. Like just be living and managing, we were doing something outstanding and worth recognizing and sharing with the bigger world. I kind of feel that at same way at 27 years, that it's not all that impressive. I haven't done anything "special." Sometimes, I feel guilty about being this "normal" without noticeable complications when so many others are, for no apparent reason.

But while it may not be that big of a deal to us that we've "done it," maybe it is in the grand scheme to those who are just starting out post-diagnosis or those in the grips of feeling that they can't and will not get to this point. They CAN get through the hopelessness.

In a follow-up email, my own mom wrote something that really sticks with me. She talks about how she had the same sense of "Why Bother" as a teenager and young adult. Thanks in large part to medical professionals telling her she'd be dead by age 21.

"After I turned 21 and was still alive, I couldn't figure out exactly what was happening and why I wasn't dead. "

Wow.

To me, this hits directly at why it's so important to talk about these success stories of those who are Living With Diabetes for so long. To share with those who need it most that they AREN'T alone, that they can do this. We can achieve our dreams, even if we've thought somewhere in the back of our minds that we couldn't because of diabetes.

So, that's where I am at. In understanding where my mind has been at on this topic, I'm now even more excited about Kim's new You Can Do This project.

I'm going to be participating, recording my own V-Log for this project that has already started but that officially kicks off June 15. If you're a member of the D-Community in any regard, as a PWD or D-Parent or just a Type Awesome, I'd invite you to join in and be a part of this incredible effort to make a different and inspire those who may need it most. Because, yes, there is a need to share these stories. Hopelessness does exist, and just by knowing others and not feeling alone, those who feel that way can be reached. We can help others cope just by showing them It Does Getter Better. And that's so incredibly important.

9 comments:

Kim said...

Thanks so much for the project shout-out, Mike!

"I think something more profound existed beneath the surface: a sense of hopelessness, that if the horror stories were indeed going to happen then how I lived didn't matter all too much." - This sounds so, so familiar. I felt that way at one point, too - but I hope that the people we reach can come away with a little bit less belief in those feelings.

Sysy said...

I like this post and can relate to your thoughts on the matter. I agree that doing things to help others possibly get through the hopelessness is very valuable. Because I grew up feeling sure that I'd be blind by 40, I didn't take care of myself for many years, we're talking about 10% and 11% A1c levels...but when hope started to enter the picture, my health and happiness did, too. My entire life changed dramatically. I love this project and hope many people participate :D

Un-Apologetic Diabetic said...

What a thoughtful post. For a long time, I just assumed D would take me away young. I am inspired when I hear about these medals and awards for long life with D. Now I take better care of myself and am in the best health I've ever been in with diabetes. I hope to participate in the project too!

Simon said...

An excellent post Mike
And an extraordinary life you have to reflect on. As a relative newcomer to diabetes with an extra side of advanced complications some aspects of the "avoiding" complications part of diabetes I have missed. I am however forever grateful for meeting folk like you (through your blog) of a similar vintage, who have helped alleviate the emotional and mental burden of diabetes.
Thank you for your blog and presence on Twitter it means more to others (like myself) than you think

Scott Strange said...

What a great post, Mike. You summed up so many of the feelings and thoughts that I have about still being here.

Thanks for spreading the word!

Reyna said...

You make me smile. Your thoughts were well written. I liked hearing/reading your mother's take too. I have hope that Joe will live a long and healthy life. It is achievable. I don't think he would even question his longevity.

I cannot wait to see Michael Hoskins VLOG!!! I am going to start working on mine soon. Great reminder.

Wendy said...

This was very thought provoking...I'm completely inspired when I read about medalists.

When my daughter reaches 50 years, she'll be 52 years old.

I'm almost 40. In the big picture, 52 is only a few years away.

There's still so much life to life at 52.

Knowing others have done it, gives me more reason to hope, pray, and fight for better technology. It makes me more determined to find a cure.

Hallie said...

Great post!! I really don't question Sweetpeas longevity. I believe she will live a long, healthy life. Some of that is because I simply can't think of the alternative. Some is that I believe management will keep getting better and helping her with this.

I'm always impressed when I read of people living with Type 1 for so many years - not because they are still alive (although that is awesome!!) but more because I know how hard they've worked for so long. I know how they've been fed up, felt different, been angry, sad, hopeless.... D is a lot of work, even if it does become routine. So I can't help but be impressed by their perserverance.

Can't wait for the project!! Woo Hoo!!

EDONAdesigns said...

I'd never celebrated a dia-versary until I got involved with the DOC. Your post hits home on this. I questioned why would someone want to celebrate that? Now, I'm proud of my accomplishment. 39 years is a long time. It is a routine but there can be bumps in the road. Your post has inspired me to participate in Kim's project. Thank you!