My broken pancreas is now 30 years old.
Yep, this past week brought the official start of my third decade with type 1 diabetes, a diagnosis that came back in 1984 when I was five years old. To be honest, the specific date and month of diagnosis has been lost to time, but we know it was in March or April that year. And after a new insulin pump arrived on my doorstep a few years ago on March 10, I declared that date as my official diaversary day.
No, I don't exactly "celebrate" the day. Rather, it's just recognition that another year has passed, and I've been able to continue living as well as I can with type 1 -- the notion that at least for one more year, diabetes hasn't bested me. Or as my friend and fellow type 1 Kim Vlasnik likes to say: Diabetes Won't Stop Me.
Looking back, I'd have to guess that probably a good decade of my life with diabetes -- A FULL THIRD OF THAT TIME -- was probably spent in the regretfully scary vicinity of "completely batshit out-of-whack." Blame the "Why Bother?" attitude that hit in the middle of my three decades. But fortunately, through a variety of factors that include growing up, facing my own mortality, the support of my wife and family and Diabetes Community, things started changing about a decade ago...
And now, here I stand as a diabetes advocate (best I can), D-writer, and generally pretty happy person with a darn good life. Now THAT is something to celebrate!
This past weekend, I opted to mark my big 30-year diaversary with a seven D-peeps here in the Indy area at the annual Beta Cell Bash -- and together we have 174 years of type 1 experience under our belts! The Bash is an annual fundraising event for the JDRF Indiana Cure Chasers bicycling team, and it's been a blast attending since it got restarted (after a few year's break) in 2012. A fellow type 1 named Michael K. Schwab is behind this event, and as it turns out Michael is also celebrating a diaversary -- marking his 41st year with type 1 this month! (He's also a DOC'er, on Twitter at @mikelcycle and a D-blogger over at the Insulin Pimp.)
At one point, Michael (who was sporting his "Diabadass" T-shirt while serving as MC) announced that all type 1s in the house who were celebrating diaversaries should head up to the stage... and five us made our way up there.
Pictured above: Neal Hoffman, dx'd 20 years ago this month; Amy VanDeWielle, dx'd 26 years ago; Daniel Bartholomew dx'd 20 years ago on March 15; ME, 30 years ago; and Michael K. Schwab, 41 years ago this month. That photo includes 136 years of type 1 on stage, and we know there were at least two other PWDs present who added another 8 and 30 years to the total tally -- to hit that 174-year overall total!
It was a fun time, but one that also brought some reflection on my part, about how much I appreciate advances in D-Management and technology over the years, but just as important, how meaningful peer support has been in my life -- especially for the better part of the past decade with the Diabetes Online Community. It's been invaluable and life-changing, both personally and professionally, and my DOC family has been an incredible addition to the support from actual family, my "real-life" friends, and my "Type Awesome" girlfriend-turned-wife, and of course those who've been on my D-Care team of health pros.
Thanking My Original HCPs
First off, I thought I'd take a moment to thank three individuals who were there in the very beginning: my very first endocrinologists and educator. For blogging purposes, we'll just refer to them as Dr. Friendly, Nurse Kathy, and the unforgettable Dr. Strict.
Dr. Friendly: You were my first endo, who diagnosed me with type 1 way back in 1984. Since I was so young, I don't have many actual memories of my diagnosis like so many do. Except that it was quickly recognized thanks to my mom's longtime experience with type 1, and so after we saw the initial signs of extreme thirst and urination we headed right to the doctor. My mom tells me I only hit the 200s, so there wasn't any near-DKA experience like so many go through.
We came to see you at Children's Hospital of Michigan in Detroit. Although the details are fuzzy, my mom and I both remember generally that you were very nice and really cared. Unlike other docs through the years, you were very good at dealing with kids and didn't try to treat them like little adults, meaning you didn't have expectations that I'd follow rules and routines like older patients might.
A few months ago, I found you on Facebook and it's been great to connect some online! It's almost like coming full circle. But now, I want to thank you publicly for being one of the people who helped me get to this point three decades later.
(Side note: I'm not the only DOC'er to come full circle in finding some of the original cast members of D-Care Teams of the past - both Kim V and Kelly Kunik have shared their stories of re-connecting, too!)
Nurse Kathy: You were the face of my Diabetes Care Team, the person that I always looked forward to seeing and working with when I came into the office. I understood that you were "overseeing" all aspects of my day-to-day D-management, and our family could reach out to you at any time. You wrote a touching letter for me about four years ago when I was applying (belatedly) for my 25-year recognition certificates from Lilly and Joslin, and I think that quoting that letter here would be the best way to illustrate how much impact you've had in my D-Life:
I have known Michael Hoskins since March of 1984, when he was diagnosed with insulin-dependent (type 1) diabetes at the age of 5. I recall specifically that Michael was 5 when diagnosed, as that was the same age his mother had told me she herself was diagnosed with diabetes. I continued to work with both Michael and his parents through our outpatient clinic, until I left my position at Children's Hospital when Michael was 17 years old.
1. Michael had a stuffed animal, "Froggy" that he held and dragged around with him (as seen to the right, in a pre-dx'd pic with my mom's parents).
2. He always lit up with a smile when 'Nurse Kathy' came to see him.
Mr. and Mrs. Hoskins were in regular contact with me through the years I worked at Children's Hospital, and I recall providing helpful hints to his mother when he was getting ready to start school and continued with regular contact on the phone as well as at clinic visits as Mike grew and developed. I remember that both of his parents highly respected our advice in regard to handling Mike's teenage years, and I was always proud that the love and limit-setting they provided helped him (and them) make it through his growing up period without any obvious physical or emotional scars.*
Since 1996, I've continued to maintain contact with Michael and his family as a friend and at times a consultant. I have seen Michael grow from a brave little boy who did not complain about taking insulin injections or having to follow a diet, to a mildly rebellious teenager and now to a responsible young man who is married, working with the newspaper in Indianapolis and taking charge of his diabetes control.
*See? A health professional attests that I have no scars -- all good!
Nurse Kathy, thank you so much for all you've done for me through the years. You now have your own private health education and consulting practice and it looks like you're doing great. The advice and diabetes care you gave me when growing up helped empower me, and that's been invaluable. Now, as you know, I've moved on from general and legal news reporting to diabetes journalism here at the 'Mine, and in connecting with many more CDEs through the years, I can now appreciate even more how much you did for me early on. Also, so you know: Froggy still sleeps with me each night, as he's still my special "Frog Before Diabetes." There aren't many memories or items that have stuck with me from those very early days, but an image of your face always did -- and still does now -- bring a smile to mine. All I can say now, once again, is Thank You!
Dr. Strict: You teamed up with Dr. Friendly a few years into my diagnosis, and we were together through the time I was about 18. While I remember you knowing your diabetes management of the 80s and 90s, we didn't see eye-to-eye on how to communicate. You were very tough and liked to use scare tactics to convince me why D-Management was so important. What you didn't realize was that your attitude and judgement made me rebel even more. I heard those horror stories all the time, and didn't need your reminders at every visit! Of course, my double-digit A1Cs were bad news... but the support and two-way discussion I needed wasn't your strong suit. Now of course I regret not taking my diabetes more seriously back then, as you were just trying to make me understand. One memory stands out among the rest: You looking into my eyes after seeing my 15% A1C, and telling me that I was killing myself and would be dead by 21 if that continued. Yes, that was harsh but it was a truth -- and it set me straight for a time. So that particular scare tactic worked briefly, but it didn't inspire long-term change. That didn't happen until many years later when I found hope, a purpose in my life, and peer-support that truly gave me the empowerment and motivation needed.
To give proper credit to these first three and to others I've worked with over the years, I bought some Blue Cupcake cards to send to my past and present D-Care and Support Teams. These cards are the brainchild of D-peep Allison Nimlos, a former team member here at the 'Mine, and are definitely worth checking out; they even have "Happy Diaversary" cards! But they don't yet offer endo or CDE-specific Thank You's, so I got creative and used the "Thank You for Supporting My Ride" (with diabetes) versions. :)
Just Keep Living
I know 30 years seems like a long time, but it's all relative -- really, it's a drop in the bucket compared to others who are at their 40th, 50th, 75th or even 80th mark of living with type 1. While I still do worry about how long I can last before complications enter my life, I'm also more optimistic than pessimistic these days because of all the inspiration coming my way (#DOC).
Lord knows that I have struggled, but I've also succeeded and made the most of diabetes. And where I once felt diabetes was a curse and a burden (all the time), I now more often see it as a blessing that has helped me improve my life in many ways. Not every day, obviously. There are times when I just hate on diabetes, and times when I cringe thinking back on how rebellious I used to be and how bleak the future can feel when roller-coastering between highs and lows, dreading complications and so on.
But we can't live our lives in regret and dwelling on the past, and we can't be paralyzed by the fear of what may never come to pass. So I keep on strivin' to look forward with hope. There's a lot to be thankful for and continue to hope for, and I'm eager to see where the next years -- however many there may be -- take all of us.
Mike: Sending much love and D-success from your friend & colleague Amy here at the 'Mine. You truly live up to this motto: 'Be the inspiration you want to see in the world'!