Tuesday, February 22, 2011

Me, Not D

Recently, Briley over at It's About Independence, It's About Life sent me an email saying she had a story to tell and wanted to see if she could share it over here. Always welcoming guest-posts and opinions from fellow D-Bloggers, I agreed in a heartbeat and looked forward to sharing her thoughts with the rest of the Diabetes Online Community.

Sending her post, Briley noted: “I'm very honored to be writing here today. This is my first guest post anywhere and I couldn't be happier that it's here. I started reading Michael's blog when he wrote about D camps, and I'm a big fan of camps, especially D camps. He welcomed me into the DOC with open arms, and really made me feel like I belonged.”

Then, she shared her story. 

I want to talk about the difference between being a diabetic and being a person; more specifically on Valentine's Day. I had finished the most amazing meal I've ever cooked, and The Boy was telling me how his gift for me seemed insignificant. I told him I didn't think that it would be. It was this giant cardboard box sitting there next to me being all intimidating during dinner. I took the tape off, and opened the box and I see bubble wrap and green. Like juice boxes. Sixteen of them, in fact. I've certainly had crazy lows with him. From nights where I needed five juice boxes in two hours, to multiple juice boxes to get rid of a number in the thirties. I started laughing because giving me something that is going to help me is sincere.

He kept telling me it was insignificant, but I said he was wrong. Insignificant wasn't the right word, But they certainly didn't make me feel good or special. And isn't that what Valentine's Day is all about? I just kept going with the night, and kind of ignored what my present was. But the next day I couldn't stop thinking about it. It made me feel like a burden. I don't want to feel like a burden, I just want to feel like a girl. I am happy that he supports me, and that he realizes this is something I need. I know that it's a caring gesture and that is how I've come to look at it.

But there is so much more to me than diabetes. On regular days, I want diabetes to be on the back burner. On special days, I want it to be invisible. Diabetes can make me feel like a burden all by itself, I don't need a present that emphasizes that feeling. 

Reflecting on Briley’s situation, I know exactly what she means. I'm pretty sure we all do. I’ve been there, in various situations during my 27 years with diabetes. We try so hard to not be defined by our diabetes, to make it so diabetes isn’t the focus, but we are. Me. You. The person. Maybe our skills, our talents, our abilities, or even the situation itself and not about the diabetes. But sometimes, it’s just interfered and become the focus against our wishes – and that makes us feel out of control, even like a burden if someone else is brought into it.

In my own life, I tried for so very long to make it so my diabetes was invisible and not the focus. This is something I grew up dealing with on my own, so there was no need to bring others into my D-Life or make it “a big deal.” This was long before the shared-experience of the DOC, before it became “the cool thing” to talk about. In those days, talking about it made it bad, and so the logical extension was whenever diabetes came up, it must be somehow tied to a negative.

This carried on mostly up until meeting the woman I’d eventually marry, and in those early years together she helped me see it was “normal” and not something to be ashamed of. We supported each other, with or without diabetes being a focus, and really for the first time I began feeling positive about myself and my health. That my diabetes didn’t matter or spoil a truly splendid and wonderful thing.

But even then, diabetes wasn’t something I openly and outwardly let the world in on all the time. Those guarded, shielded, “me” times were still needed.

A few summers ago, a good friend and I were out on the golf course. We were at a local course and it was just the two of us. But being a sunny weekend morning, we were paired up with two others who were out there on their own. The four of us ventured out on the course together. That day, I was out there to play golf and enjoy the times with a good friend. At one point, as one of the guys was teeing off and were standing behind him waiting, one of the strangers glanced at my waist and saw my insulin pump. “Oh, is that an insulin pump?”

My world was deflated. I’d tried so hard that day to not make my health a focus, to make sure my sugars were fine and that I wasn’t going to be hindered by a Low blood sugar or anything else while out there enjoying the day. Then, this curveball comes out of nowhere.

Again, this was before the days when my active involvement in the DOC spurred “D-nerdiness” that might now lead me to sprint across the golf course in pursuit of someone interested in talking about diabetes, particularly if that person is a fellow Person With Diabetes. No, that summer day, I just didn’t want diabetes interfering with my life.

“Yes, it is,” I said without emotion, not making eye contact and then turning away from the inquisitive mind.

Totally brushed him off, and ignored it.

A simple enough question had, as it seemed at that moment, invaded my world and brought my mood down.

Nothing more was said about it, though it later became an inside joke between my friend and I about how to actively avoid engaging in conversation and sidestepping whatever issue might be the topic of conversation.

This comes to mind because really, no matter how good the golf course guy’s intentions were, I didn’t want that moment to be about my diabetes. I wanted to be about my golf (for better or worse), about that day and just us guys out on the links. Me, not diabetes. So many other experiences in my life have given me that same feeling – that the focus is anything but my diabetes. It’s been a success at times and sometimes it hasn’t.

No matter how much we talk about diabetes as advocates and bloggers and "empowered patients," sometimes we just don't want to talk about diabetes.

Sometimes, we “just don’t care” and we don't want to wear it on our sleeves or jump over church pews or dinner tables to meet someone else who has an insulin pump. This brings to mind a post Kerri wrote recently, and helps me think twice about how I approach other PWDs out in public - regardless of how excited and cool I am about seeing a fellow D.

No matter how much diabetes is a part of us and how much ownership we've taken, sometimes we want the focus to be anything but diabetes. We want to be "normal." If even for a moment.

5 comments:

Kim said...

Briley, I totally hear you. A funny gift, but not the kind you'd want to receive on a special occasion like that. If he had asthma, would he want an inhaler for Valentine's Day? I think not.

Thanks to you and Mike for the great post today!

The Chocolate Cheerio said...

I loved this! I always appreciate when my boyfriend drops by juice when I'm running low (on juice and on bg, haha), but I'd hate to get a D-themed gift on a holiday. When I was in class yesterday, a girl asked me if I was "wearing an insulin pump, like to regulate my blood sugar?" I normally enjoy moments of advocacy, but I JUST didn't want to deal with the issue or her confusion ("no, it gives me insulin, but I manage my blood glucose levels"<-- because this is SO hard for the outside world to understand, apparently!!) at the time.

Melissa said...

I hear ya! There are some days when I just don't want to talk about my diabetes or answer questions about it. The other day I was updating my insurance policy and my agent was giving me the 20 questions routine about diabetes. I just wanted to sign my policy and go home!

Simon said...

Great post Mike
The talk/not interested in talking tightrope is a tough one for me too. I find myself swinging each way sometimes several times a week. Keep up the great work

Mel said...

Great post - My Mr 10 was diagnosed with Type 1 in April last year. Now the big question is this: On the anniversary of his diagnosis (26 April) do we make a fuss and acknowledge it or just let it slide. Hmmmm?