Thursday, December 2, 2010


The meeting was full.

Of People With Diabetes who had lived
31 years
44 years
51 years
with Type 1.

And it was wonderful to sit amongst them, as a mother to a little girl who I hope, beyond all hope, lives to go to a meeting where she proudly declares that she has lived 51+ years with Type 1. It is my grandest hope for Grace. And I caught a glimpse of it last night.

Gary Scheiner runs a Diabetes Tech support groups for Type 1 folks who use the pump, and the folks that care for them, every few months, at his offices at Integrated Diabetes Services. Last night was one of those nights. He invited a local endocrinologist to come and speak about hypoglycemia - prevention, causes, etc. Gary opened the meeting by reading a children's book about having Type 1.

Gary spoke about what's forthcoming in terms of pumps and about the latest research. He also drew a great graph that correlated the amount of risk of complications from diabetes and a person's A1C. Meaning that the higher the A1C, the more a person's risk for developing complications inreases. Once an A1C of anywhere from 5-7% is achieved, the risk of complications is negliable. And when a person decreases their A1C from say a 6.5 to a 6.0, while there is gain there, the increase that a person won't develop complications is minimal. In other words, once you get to 7 and below, there isn't much 'bang for your buck' in terms of decreasing your risk of complications even more. I love that kind of knowledge. So, the tighter control is great, but too tight doesn't often get you any more than you already have.

The best part of the meeting was hearing from the older folks - ok, middle aged folks and some older folks, about their years living with diabetes. Reminiscing about the dark ages and testing their urine, giant needles, visits to the doctor, parents worrying about them, having low blood sugars and getting candy. And I think that Grace's reminiscing will be about her care, her meters and pumps, visits to the doctor, parent worrying about her and having low blood sugars and getting candy. There is a circle that completes us all in this diabetes. We are all but one pinpoint on the circle and it keeps coming round.

There were some at the meeting who were newly diagnosed, newly pumping and were aiming for tighter control because of their need for control, their need to not do what they perceive as damage to their bodies from high blood sugars, and the need to 'gain good control' by getting an obscenely low A1C. I'm talking like 5.7. Yeah. That.

I understand that, I really do. I get the need for control over this disease.
I get lost in that sometimes too.
I understand the not wanting the highs.
I know what they can do.
What I try hard to understand is the 'getting the better grade than anyone else in the class' mentality.
As if, with a low A1C, they can say they 'won.'
I'm not sure I can wrap my head around that.

Uh, I'm not sure that it works that way folks. But I kept it to myself. I was the newbie in the group.

I looked around the room. It looks like that sentiment was shared by the 20+ other Type 1 folks - the lifers - the 30+, 40+, 50+ years with this.
They smiled. They nodded.
They oohed and aahed over the 5.7 A1C.
Then they chuckled. Hard.
They gave knowing glances to one another.

They said that there is no such thing as control sometimes, diabetes does what it wants to do.
They said that they wanted to enjoy life and have the pie.
They said they wanted to live to see their grandchildren.
That they would do what they had to do, but that it wasn't a grade and it wasn't a race.
The slow and steady won, not the fastest to the finish line, in this diabetic marathon.
That they didn't think about their numbers all day, every day, and obsess about them.
They had other plans - lives to live, people to love.
That the numbers just told them what they needed to do.
They made adjustments to have that elusive 'control' but that it didn't consume them.

And I smiled.
And I knew.
I had found my bounty in all of this.


Unknown said...

Penny, what an awesome group/experience. I am psyched about "not much bang for your buck" under an A1C of 7%. That is interesting and GREAT information. Thank you for sharing it.

Yeah, I don't get the 5.7 stuff. I mean, if you can achieve that without many lows then kudos to you...but any idiot (sorry) can acheive a low A1C by having too many lows...and that is NOT smart. I hope I don't catch any flack for this comment.

Love you Penny!

Denise said...

I hope Grace and all our kiddos go to a meeting and NOT declare they have lived 51+ years WITH Type 1 but that they are able to declare 51 years ago, they HAD type 1 :-)

Love listening to PWDs who have been doing the T1D thing for a while cuz it really puts things into perspective for those of us new to the game. Our kids will be fine because we are on it :-)

LaLa said...

I love this information - thank you so much for sharing!!! Seriously agree with eating the pie and enjoying life!

Pam said...

"Numbers just tell you what needs to be done." Amen.

Grace's last A1C WAS low - 6.2. But it was clearly a result of WAY to many lows this past summer. My endo and I were both confident that that number meant only that we had work to do to get the lows under control. And we have... almost.

Unknown said...

What a blessing to have this group nearby!

I'm encouraged by that little "bang for your buck" tidbit!!!!!

Thanks for sharing!!!!

Meri said...

Thank you! Thank you! Thank you! I feel like I just went to a virtual support group meeting. :)

I love the information, especially about the a1c is completely interesting! Glad it was a great experience for you!

Heidi =) said...

Awesome post! Thanks for sharing your heart and your bounty! <3

Hallie Addington said...

How wonderful! Wonderful group! Wonderful support! Wonderful info about A1c!

It's my greatest wish, too. How cool!

Anonymous said...

I love going places where there are Type 1's sitting around talking! It's rare but soooo cool in it's own strange way! The A1C information is very very interesting! Thank you for sharing!

Jules said...

I loved every word of this post, Penny, and it summarised how my husband and I see the whole thing. It's not a race and life is about the bigger picture of experiences and love. Above all love. Thank you for your words today.