Monday, February 4, 2013

"So... What do you even do at a diabetes conference?" CWD goes D.C.

"So... What do you even do at a diabetes conference? Haven't you already been to like a million of those?" 

When people ask me this question, 99% of the time, they want a straightforward, concise, easy to digest answer. It's a simple enough question that I've had 9 years to contemplate and come up with an answer... But truth be told, my answer is never consistent. Sometimes I keep it simple and just say 'that it's a conference for families to learn about type 1 diabetes'. Other times, 'it's a conference that my family has been attending for 9 years, that we now volunteer our time for as Staff & Faculty members'. And other times yet, 'it's a diabetes conference where I learn new stuff, hang out with friends, and work as a member of the youth faculty'

There is no simple answer, because the Children with Diabetes conference is a million and one things for me, and it's always changing. I originally intended on writing this blog similar to the ways I've written others -- a long post summarizing the progression of events and what it all meant to me -- but this time, I'm doing things in a new way. I realized that with my intention of combining photography and writing for this blog, it's incumbent upon me to do this differently. Before I write the majority of this post, I'm going to post a series of pictures (just a fraction of the 1100+ I took this weekend) that do a better job of explaining "what I do" at a diabetes conference. I've gone through the pictures over and over to try and choose the ones that personify what this conference means to me. (I'll be posting way more on my Facebook in the coming days, so CWDers, don't fret if you don't see one of you on here that you'd like to have! I guarantee I'll be flooding your news feeds with pictures quite soon). 

So here it is. 

What do you even do at a diabetes conference: A look through my lens.


You learn a lot about photography from Jeff...

You take selfies... 
You walk around in big groups looking for places that will serve 14+ people without a reservation...



In the cold... 


But you stop for pictures anyways...




You work on Staff with your friends...


And get REALLY involved in the activities. 




Like trying to keep up with Harold...



You play games with a purpose... (This was team building I swear).



You learn...



From Natalie...



From "normal dudes" who've climbed Mt. Everest & raced across the Sahara...



And from each other. 



You relax... (For a few seconds at least). 



And get RIDICULOUSLY silly... (If you can't do that, CWD will be seriously uncomfortable).




 








(Did I mention take selfies?) 




You'll play mafia... (CAHOOTS I TELL YA!) Feel free to ignore that if you don't get it. 



You'll get really into mafia & beg for help... "Help me I'm pooooor!"



And you'll laugh...




(Trust me, Abdalla's laughing).



You'll laugh so hard, you'll cry...



And then there's Maya who gets her own category...





 Divaaaa!






The best part: you'll see the family you haven't seen in a long time...




And you'll take pictures...






Lots & lots of pictures...






And finally, you'll hug. You'll hug A LOT. (If you don't like hugs, CWD will be seriously uncomfortable for you.)



You'll hug your brother...  



You'll hug while being photo bombed...



You'll hug at breakfast...



You'll even hug when it's not being reciprocated...



You'll hug to say hello...



And you'll hug to say goodbye... </3



These pictures are what I do at a conference. I don't know that this captures the essence of what goes on for everyone, but it does for me. These aren't all of my pictures, and they certainly don't include all of the people I love, but it captures the emotions. At conferences, you'll love & you'll be loved. A lot. 

I've been trying to figure out exactly what it was about THIS conference in particular that made it so wonderful. There was something about this one that left me feeling as emotional as I did when I was 11 & 12 years old at FFL conferences SOBBING in the lobby as I parted from friends. As the years have gone on, the sobbing has decreased but the emotions have not. In DC, I had tears in my eyes as I packed my belongings the night before leaving because I knew leaving this one would be really hard. I didn't know why, but I think I do now... 

The past year and a half has been a hard one for me. I love college, and I love learning, but my first year and a half was tough. I didn't adjust as quickly as I thought I would, and I dreaded every time someone asked me how school was going. I'd smile, say it was fine, and change the subject as quickly as possible. This time though, I was in a really great place going into the conference. For the first time in a year and a half, I was genuinely HAPPY with life outside of the conference, that going into it, I wasn't relying on the conference to bring me out of some sort of rut. I once heard that the word 'fulfillment' literally means 'that which exceeds capacity'. Going into this conference, and being genuinely happy, meant that everything else that was positive would be extra...a bonus. Being surrounded by the love & support pictured above pushed me over the edge of happiness. (Those tears from the night before were likely the overflow from being so happy and realizing it was over)... I had reached capacity and something had to give. I mean, I can't express how wonderful it was to be asked "How's school going?" and respond that things are genuinely going well. To be asked and know that the other person really wants to know how life is... And to know that they are so relieved and happy that you're happy, is a really good feeling. 

One of the most important parts of my experience this weekend, was the fact that I went into this conference a different person than I was at the last, and it ultimately allowed me to grasp things in a new way. Sebastien Sasseville delivered an amazing keynote speech on Sunday morning before we all went our separate ways home His words & message had a real impact on me, as he knows. (If you don't know about Sebastien -- in a nutshell that only explains a part of who he is -- he's a type 1 diabetic who successfully climbed Mt. Everest, has raced across the Sahara desert, and has competed in/is training for Iron Man triathlons. At CWD we like to focus on all the things you CAN do with type 1 diabetes... Everything.) There were two things in particular that have had a profound effect on me from his talk. One is directly related to diabetes, the other indirectly. 

The first was something he said about changing the way you perceive your diabetes. It's something I've "always known" but haven't totally implemented in terms of improving diabetes care on the daily. Too often we shoot for that perfect number, or perfect A1C, that the importance of the journey is lost. When I hit that perfect 120, it's such a fleeting victory. The way Sebastien put it, you don't own that number. You don't get to put it away forever and save it for when you're high and need to be a perfect number again. When you hit that perfect A1C, again you don't get to keep it forever. You're not done... In one of my old blog posts I wrote, "I’ve been so fixated on just getting to that number, I haven’t put any thought into what comes next. (Maintaining that number for instance.) I believe that there needs to be a shift in thinking when it comes to how we look at our numbers." That post was published on February 9, 2012... Almost exactly one year ago. I had the idea, I understood the concept... But for some reason I forgot the essence that message along the way. Hearing Seb rephrase it and put it into context was really intense for me. It was a simultaneous blast from the past, and a new lens to look through going forward. 

The other important thing that has stuck with me is something he said about the moment he crossed the finish line, after a week long race in the Sahara. He said that, at the end of the race, there was no cheering squad. There was no celebration. It was the ultimate proof that doing that kind of race can't be fueled by your ego... There's no one with you racing in the desert other than your competitors and at the end, there's no one making a big deal about you. Seb made a great point... He essentially said that natural selection has a way of weeding out the ones who do things for the wrong reasons. I've struggled with some situations where it feels like people without integrity always end up on top. That if you screw enough people over, you actually can win. It's obviously not true, but hearing it in that context at that particular time was so important for me. I can't thank Sebastien enough for opening up and sharing those parts of his life with all of us. I've known much of his story for some years now, but this time it had such a huge impact on me. 

If you're still reading this... You're a trooper. My blogs are usually organized in the sense that I know what  I want to write about, but not exactly how I'm going to say it. I find that a stream of consciousness always ends up being the most genuine and relatable. (Though it also means a lot more  typos, grammatical errors, and definitely run on sentences). 

The last thing I want to write about for the moment, are the love, compassion, and generosity of those who run the conference, who volunteer, staff, etc. 

On the first night, I saw Natalie Bellini, one of my mentors, heroes, and all around favorite people. I've been without a pump clip for a longgggg time, and I asked Natalie if & where I might get a new one. Without even thinking about it, she took the clip off of her pump and gave it to me. I was stunned for a moment, and relaxed the second. This is how things work at CWD. If you have something to give, you give it. It doesn't have to be a pump clip. It doesn't have to be a physical thing at all. The giving at CWD is deeper than that. The people at CWD are generous with their hearts. I was momentarily taken aback because outside of the CWD world & my family, I'm not accustomed to being around people who are so generous. I have great friends on campus that I can rely on for anything, but for the most part, a college campus is not the place to go if you're looking for that type of generosity. The amount of care and love freely given by anyone who's a part of the CWD family is incredible. When I'm asked how I'm doing.... I know it's coming from a place of genuine concern. (I've probably overused the word "genuine" in this post... But it seems to be the only word that fits every time). When I need help, I'm not afraid to ask because I know it's not viewed as a burden or a favor. When I call CWD my family, I don't say it lightly. I don't say it as a cute way of over exaggerating how important this group is to me. Because the only other place, the only other people I'm this comfortable around, this open around, this supported and loved by, is my immediate family. 

Coming to a CWD conference is coming home... Especially for those of us who have been here for so long. It's a home that's always expanding and always has its arms wide open... Things change and people grow. Some leave and don't come back... Others leave for a short while... Some of us never leave... No matter which category, everyone walks way having gained something from CWD.  The most important part is knowing that there's always a place and people to come back to. It's the only way I can get through the months apart from these people. The most wonderful, sometimes dramatic, dysfunctional, and loud people I know... And if I'm ever frustrated by anyone or anything, it's ok, because that's how families work. You fight, bicker, and squabble every so often, but you do it because you have that security... The security in knowing that no matter what happens, you'll still be together and still love each other in the end. To quote Natalie, you leave CWD conferences, "full and empty all at the same time." 

So to those of you who've asked, this is what I do at a diabetes conference.

Here's to FFL 2013 being the best conference yet. 

8 comments:

  1. This is an astounding post. Thank you so much for sharing ... all of this.

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    1. Thank you so much. That's such a HUGE compliment, especially coming from you. Thanks for reading through the novel :P

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  2. ok, so my computer messed up and deleted my comment..
    no clue why...
    Just wanted to say that I've watched you grow up...
    and am proud to be a part of your CWD Family...
    and am so proud of the beautiful woman you have become !

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    1. You've always been there for me with encouraging words especially when it comes to the things I write. I honestly appreciate it so much & am so grateful to have you in my life. <3

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  3. This is so true! You have not only articulated how it is for you, but for many of us Maryam that are not able to put into words what CWD does for us. Amazing job, and so authentically articulated!

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  4. Maryam, Your response is so amazing. It captures what so many feel, and express it in a way "outsiders" might comprehend.

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  5. I feel like all our conversations about the conferences and you trying to explain it to me have been finally been pieced together by this post. I have a better understanding and totally will not be lost next time we talk which prob will be like soon ;)!!

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  6. Maryam, your mom shared this link with me and wow, you really brought the conference to life with such vivid heartfelt writing. What a beautiful community you have cultivated. Thanks for sharing!

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