All I know is when I was diagnosed in February 1972 I was told, “There’ll be a cure in five years.” I know, you were told that too. And, “Your lifespan will be fifteen years shorter than average.”
Well, this week marks my 52nd ‘diaversary.’ The medal from Joslin, above, I received two years ago when I crossed the 50 year threshold. Due to Covid I didn’t get to go to Boston and attend any kind of ceremony. Still, it’s nice to look at.
As to the second prediction, recent studies show that people with type 1 diabetes, who take good care of themselves, tend to live longer than the average American. I’m assuming that average American is eating a relatively poor diet of processed foods and not physically active.
In some ways the more years you live with type 1 the easier it gets. You know your patterns better, you get used to doing certain things like ordering medicine and supplies, and if you’re lucky, you have a few friends, or just one, with diabetes. At the same time, it gets harder. More tiresome, maybe some complications have come and there are a pile-up of endless, countless days you wonder, “How did that happen?!”
Still, at an age when I’ve already lost friends to other conditions, I’m grateful I’m still here.
In two days, February 22, I’ll be “celebrating,” well acknowledging, 52 years with type 1 diabetes (T1D). Since I got it at 18, I have lived with T1D much longer than not. In reality, I have no memory of what it’s like to live without eye-balling carbs, checking my CGM, thinking ahead what and when I’ll be eating, will I be walking, oops that was stupid, etc, etc, etc.
If you think I have tons of wisdom to offer having lived 52 years with this, maybe I do. It would probably pour out of me if we were having a conversation. But since this is a one-sided conversation, here are my nuggets. Yes, they’re purposefully spare because it’s easier to remember a few things than memorize a living encyclopedia:
Use a CGM if you can. If not, check your blood sugar before and two hours after meals and activity. Look for patterns to know better how to dose.
Don’t beat yourself up for your numbers. Few will tell you this truth: You can’t “control” blood sugar. The body’s biological functions are not within your control, and life is unpredictable. You are responsible for your effort, but not your outcome.
Make diabetes friends. No one else will “get it” the way they will, and those friends will put a little self-love back into your heart.
Acknowledge T1D is tough, constant work. You don’t get any days off. In fact, you don’t make any progress, you just work hard not to digress too far. Not a pleasant thought, but the first time I heard it it rang so true. Given that truth, do the work and go easy on yourself. Celebrate the wins and see yourself in a constant experiment mode.
Yes, you thought there’d be five points, but those are the four that strike me this Tuesday afternoon. And here’s my ‘one thing I know for sure.’ When I change my routine, even after 52 years, it’s like I know nothing. Eating and exercising similarly day to day is definitely my special sauce. Case in point:
Routine
Whereas my recent trip to Costa Rica where my eating and exercise, being different and unpredictable, challenged all my “best” decisions
Closing thought, no matter where you are on this road, you’re still here. That’s a testament to all you’ve done.
Above me and four of the six or seven doctors who worked at camp
The husband and I just returned from 12 days in Costa Rica. The first days were spent at our friend Daniela Rojas’ diabetes camp outside of San Jose. Daniela has run the camp for 12 years and many of the kids come back year after year. They love the camp.
Over the past few years Daniela has accentuated helping kids deal with the emotions of living with type 1 diabetes amid playing games, athletic activities and management education. She began this well-being focus four years ago using my first book, “The ABCs of Loving Yourself With Diabetes.” We actually produced a Spanish version of the book when we published it.
The kids in like-aged groups would chose one of the inspirational essays in the book to read and then discuss the feelings that it brought up for them. For example fear for their future; would anyone love them and marry them; guilt over being a burden to their parents. To my knowledge no other diabetes camp puts such emphasis on the well-being and mental health of campers, nor gives them such creative ways to share. Here’s a short video that was shot at camp that features me and the husband.
We’ve been invited these past four years to camp, but each year something got in the way. Thankfully, this year nothing did. As part of my contribution I shared my story of living almost 52 years with T1D. A hush fell over the 60 campers when I talked about a previous boyfriend who was completely oblivious to my need to treat a low blood sugar. He went back to bed while I searched in his darkened flat in London, where I had just arrived that day, for sugar. A few tween girls dissolved into tears at various times during my talk, as their feelings of shame and fear arose. The husband and I talked with them afterward and the next day they were all smiles again.
The husband led the campers, group leaders, and doctors, in somatic exercises that calm the nervous system. In truth, living with T1D we are always in a state of hypervigilance watching our blood sugar rise and fall, on the lookout for a crash and making dozens of management decisions a day. It was remarkable to see nine year olds embrace the exercises; in essence embracing themselves. And together we spoke to 20 parents of newly diagnosed kids and helped them see that their kids do indeed have a future. Some of the parents had driven nine hours from Nicaragua as this was the closest diabetes camp.
Amid all the activities, watching the kids throw themselves into playing ‘Master Chef’, above, as the sun was setting outside the camp house was beyond delightful. And I appreciate Abbott for supplying Freestyle Libre sensors to all the kids. For most it was their first experience wearing a CGM. Of course one only lasts 14 days, but still…
Needless to say camp, only 2.5 days, was a rich, rewarding experience. I had never attended a diabetes camp with kids before. If you’re wondering, what the husband and I did was translated into English. Being around the campers required no translation. Camps in the US could certainly benefit from creating a safe space for kids to bond emotionally over the feelings we all harbor living with this condition.
A footnote: We spent our second week in Costa Rica up in the Cloud Forest of Monteverde. How fortunate that my next door neighbor in my apartment building here moved there 15 years ago. It was all a beautiful experience.
Below, walking over a hanging bridge in the Cloud Forest of Monteverde, Costa Rica.
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