« From Abby: My First TCOYD. | Main | You Can Do THIS: My Video. »

Joslin Medalists: How Far We've Come, and How Far We Can Go.

During the Joslin medalist meeting last week, I didn't say anything.  I wasn't presenting or doing any kind of networking.  I was invited as "media" (totally in quotes) but I attended as a grown-up child with diabetes, hoping to continue on that path of growing up. 

I sat next to a woman named Eleanor (my beloved grandmother's name) and she had been living with type 1 for 58 years.  She asked to see pictures of my daughter.  She offered me a cough drop after I spent a few minutes trying to clear my throat, and she stuck her hand out to take the wrapper, spying my pump tubing jutting out from my pocket.  "I don't wear a pump," she said.  "I do just fine with my needles.  And you appear to be doing just fine with your pump.  Do you need another cough drop?"  I almost hugged her. 

As Dr. George King, director of research at the Joslin Clinic, gave his opening remarks, quotes from the medalists were flashing up on the screen behind him.  "I have learned to understand that perfection is not possible."  "Tomorrow is another chance to do better."  "Say YES to every opportunity."  

These people were incredible because of what they've accomplished with type 1 diabetes.  Hilary Keenan, PhD and pat of the Joslin biostatistics team, stunned me with the stats on this group.  Their average A1C is 7.3%, with an average diagnosis age of 11 years old.  Their average age is 70.  The average duration of their diabetes is 59 years.  The most common ages for their type 1 diagnosis are age 6 and age 12. And this group of medalists have a very low rate of proliferative retinopathy and kidney disease. 

The amazing Joslin medalists (and some of the Joslin team)
Photo credit to the Joslin team

I sat in this room, listening intently, and thinking about my own life.  I've had diabetes for 24 years.  Long enough to appreciate where I've come from and what I've accomplished, and yet still a "rookie" in the eyes of these medalists. 

Not only are they brilliantly healthy, despite their diabetes, but they're also insightful and wise in that way that only decades of life can bring.  They stood up, one at a time, and introduced themselves to the group.  Their stories made me laugh out loud (like when the lady was talking about her CGM and her pump, and then someone's phone rang and she stopped to ask, "What kind of meter is that?" and the other woman answered, "It's a phone?"), made me grateful, and made me cry openly in this room of strangers.

"Eliot Joslin was my first endocrinologist.  He wore a charcoal gray suit and a crisp white shirt.  And the first time I met with him I said, 'Oh my God, he's an undertaker!'"

"Diabetes has given me so many opportunities.  I had a chance to spend time with Bret Michaels."  Pause.  "But I didn't know who he was.  Now I do, though!"

"I have seen many doctors retire.  I don't have that option, so I keep finding new doctors."

One man talked about the party he threw for himself when he reached 63 years with type 1, as part of his 70th birthday party. "I handed out certificates to the people who helped me get here.  And I had one for Eliot Joslin that said, 'Helped to keep me alive, despite myself.'"

"We do our best.  And to God trust the balance."

"I was diagnosed when I was one.  My doctors told my parents I would die in my early 20's.  My parents didn't tell me this until I was, oh, well into my 50's."

"I'm here today, really, because of my wife," said a man with shaking hands.  

"Today, I brought with me my beautiful daughter.  Her name is Joslin. I named her for this wonderful place."

Me and my fellow Clara Barton Camp alumni, Jane.  YOU ROCK, JANE!!!
Photo credit to the Joslin team.  They also get credit for taking care of me and my friend here.  :)

But one man broke my heart entirely when he quietly stood up and addressed the group of his peers, his fellow PWDs with more than 50 years under their belt.  "One year, I asked the woman behind the counter how many of us there were.  How many medalists?  And she said that out of the million and a half type 1 diabetics, only about 1000 survive 50 years.  And it wasn't until I was driving home that I realized what we're up against."  He paused and put his hand to his collar, absently touching the ribbon on his medal.  "And that is when I cried."

This whole experience was so inspiring, so humbling, and made me so aware of what diabetes has the potential to affect in my life.  I was born decades after these people were diagnosed, so I know things have changed for the better, as far as treatment options.  I know the outcome for people living with type 1 diabetes has improved by leaps and bounds.  This group of medalists began their journey with glass syringes and twice-yearly finger sticks.  We are a new generation of people with diabetes, and hopefully a healthier one. 

In 25 years, I plan to celebrate my 50 years with diabetes.  I can do this.  We can do this. 

[To catch a video of the Joslin medalists telling their stories, check out this post.]

Comments

This is a beautiful recap, Kerri. Once again, you've brought me to tears. At work.

Shouldn't I see this coming by now? :)

Crying all over again. Thank you for covering this Kerri. I'd love to meet any of these people. We need to get Jane to come to camp :)

Abby - Already emailed her this morning. :) I'm on it!

This is so very amazing and sweet and inspiring and life affirming. Thank you Kerri. Each one is an inspiration, and the song carries on.
Do any of these medalists and long timers come to places like diabetes camp and speak? I would love to have Grace experience meeting and listening to some of these people.
Thank you Kerri.

Wow, Kerri that sounds like it was a really fantastic experience!

I found the quote "And she said that out of the million and a half type 1 diabetics, only about 1000 survive 50 years" to be both disturbing and humbling. Seeing anyone with that many years under their belt is amazing especially when it seems at times we're so helpless against this.

Beautiful!!! I wish I could have been there. Very inspiring, thank you for sharing!

Kerri, this is a beautiful post. These people have inspired me and touched my heart through you. Thank you for posting this.

I met a woman who had Type 1 diabetes for 53 years later summer when I was shadowing my enedocrinologist. She was incredibly nice and showed me that you really can do it. I think that, upon diagnosis, everyone should speak to someone who's had T1 for a long, long time.

Aww shucks I'm a blubbering fool over here...sniff* :)

Looking forward to celebrating with you together at that ceremony in 25 years. (non Joalin patients welcome too right?).

I felt hope and amazement. 25 more years to make it 50 years with diabetes seems so long, but BSparl and my baby will only be 26 by then. That doesn't seem so far away...

Thankyou for your blog & thankyou for this article! My daughter is a diabetic of 23 yrs. who has found your blog to be full of hope in times of dispare and also very informative. She sharesyour blog w/me from time to time which inspires me. Longivity of life is always a question & this article gives us so much courage to face tomorrow. THANK YOU! Please pass the tissue now. :)

And the tears, they flow yet again. Thanks for writing such a striking tribute to these amazing d-peeps, our people, our community. I just want to hug them all right now, and thank them, and laugh with them...and honor them. We will be them one day. We will. Thanks, K.

Thanks for that beautiful post! As a person about to celebrate her 39th Diaversary, I feel fortunate. I believe the 50-year folks took their diabetes more seriously than folks did who swere diagnosed later in time. That's because of the fact that these old-timers were given strict diets. I'm glad that I was, and that I followed it. They also took Regular insulin almost exclusively, while some folks diagnosed in the 1960's were taking one shot a day of a long-acting insulin. I feel really lucky that I was given NPH and Regular insulins, immediately, in 1972. Some of my friends have not fared as well as I. I was put in the hospital for 2 weeks following my diagnosis. That would never happen nowadays. Insurance companies disallow that. A 2-week hospitalization made me realize I had a disease that needed to be taken seriously. I've met kids who don't "get it," and I find it's because they were admitted overnight and poorly educated. Well, that's my two cents!

yeah... pass the virtual Kleenex box over here, too. Shouldn't be reading these blogs at work either, Kim!

Kerri...this post continues to be so touching, so hopeful, easily moving one to tears...I love the man who named his daughter, Joslin...thank you for sharing your gift, of writing, with all of us...

Kerri,
You are a wonderful writer and this posting brought tears to my eyes. My daughter was diagnosed with Type 1- two years ago and I read this blog every day. It gives me a better idea of how she is feeling as well as it gives us hope and comraderie in seeing all these other people dealing with all these things everyday and Yes We Can Do It!

Thanks Kerri. I take the quote about "only 1,000" with a big cow lick of salt. That's the 1,000 who've taken the time to apply for a medal. I'll guarantee you there are many more who haven't done this, all around the world. Still even if the total is 50,000 it's still not enough.

I do look on the bright side. When I was diagnosed with t1 in 1972, I think the expected life span for folks with diabetes was a lot shorter than it is today. And I expect and hope that will continue to improve.

Love reading their words. Thank you for sharing your experience!

Um, bawling. Thank you, thank you, thank you.

Thank you Kerri,
Amazing! Thank you very much for that inspiring post...

"And she said that out of the million and a half type 1 diabetics, only about 1000 survive 50 years." That so horrible to read. I can only keep praying that we find a cure or at least find better ways to manager our diabetes. Thanks for posting this. It really puts things into perspective. I too hope to reach the medal in 30 years. God bless!

Ahhhh Bernard thank you for pointing out the obvious that I totally did not see, as in 6 more years I will hit my 50 year mark. Don't know whether to laugh or cry, but I sure do become more frightened as time passes.

Thank you. It is inspiring to read about people who have not only had type 1 for many years, but thrived. I shared this with my son (type 1 for a year and a half) and he said "See Mom?"

tears in my eyes. thank you.

Wow!! How awesome are they? Thank you for sharing their accomplishments.

Kerri, Do you know if the stat. about 1000 people living 50 years is still true? That is a scary thought!

We have come far, but I feel like the improvements in the last 30 years have been really small. Yes, pumps and CGMs are wonderful, but we still have no idea if they will change the 1000 in a million making it to the 50 year with T1D mark. I love my pump because it does make life with T1D a bit easier, but will it prolong my life or prevent complications? I will have to see. Meter accuracy is still pretty bad and CGMs, while nice, just aren't accurate enough to rely on. Insulins are only marginally better than they were 40 years ago and still don't really mimic the real deal. Also, we are now just beginning to realize the potential impact of missing other key hormones as a result of T1D (such as amylin) and the role these hormones may play in preventing complications.

So, yes, we've come a long way, but there is still so much to be done. My biggest fear is that the recent explosion of T2D due to obesity and poor diet is thwarting research in the area of T1D. Drug companies will go where the money is and, let's face it, there are FAR more people with T2D than T1D. As a result, this is where the money is going. Even government-funded research is largely focused on T2D, because that is where the government bears the most cost (in terms of treating and dealing with complications).

Thanks for the wonderful post Kerri, your words never fail to give me a brighter outlook for my kid.
I also want to recommend a book I recently found called Breakthrough by Thea Cooper and Arthur Ainsburg about the actual practical discovery of insulin. I got it from my library, but the webpage (http://breakthroughthebook.com/) has links to buy it from retailers too.

How beautiful and inspiring until that statistic. Those numbers scare the crap out of me. My boy is only 18--when he gets to 50 years with type 1, he will only be 65.

I'm at 41 years with diabetes and everyday these medalists are a reminder to me! I am one that always needs a goal and since learning about the medalist program, I have used that to strengthen my resolve to keep pushing for better management, good control and happy life!

My countdown is on, 9 years to go! :)

Thanks for sharing Kerri!

Truly enjoyed your article, Kerri, and the statements from the 50(+) year Type I individuals. It made me think how lucky I am to be one of those people in that I reached 55 years this year. I received my medal from Joslin when I reached 50 years.
My ex-husband will be at 50 in a couple of years. Our adopted daughter's son became a Type I diabetic last July at the age of 9.
We both keep tabs on our grandson's care as he learns the ins and outs (ups and downs) of his diabetes control. He is doing well for just one year. The ironic part of this whole thing is that we chose not to have our own children and adopt so we would not pass on diabetes, and then our daughter calls us from the hospital last summer to say that our grandson has just been diagnosed with Type I diabetes!! We didn't avoid it after all - my mother (his great-grandmother) says it was meant to be as we are good role models for him - I guess she is correct on that one.

Post a comment

(All comments are moderated. Thanks for your patience!)