Almost 20 Years…

I’m coming up on a milestone — 20 years of life with diabetes! I’m 35 now, and I was diagnosed with this disease during the summer of my fifteenth year! It’s both hard to believe it’s been that LONG and at the same time hard to remember any of what it felt like to NOT have diabetes. I’m so very used to the routines, the way of thinking, the running food calculations, and all the rest. After all, I’ve now spent more of my life WITH diabetes than I did without it.

I thought I would share some of the highs and lows (no pun intended) of my journey with diabetes, and some of the insights I feel like I’ve gained through the years. I invite you to do the same and share in the comments this week. I would love to hear the stories of other people who have lived with this disease for a long time, hear your insights, your reflections, and your struggles.

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The running calculator
Someone asked me a while back what it would feel like to be suddenly cured of this disease. You would think the answer would be something along the lines of, “I’d feel GREAT!” But my initial thought was “I’d feel lost.” I’ve become so incredibly used to taking insulin before I eat, checking my blood, calculating my carbs, and all the rest, that I’ve often thought that I might need to continue some of those routines and inject saline solution for a while just to adjust to a life without diabetes. I’m not saying I have no interest in a cure — I certainly do. But diabetes is such a part of my daily experience that leaving it behind wouldn’t be a simple matter.

I think the most prominent habit I’ve got as a result of living with diabetes is my “running calculator.” I look at food and it starts spitting out carbohydrate grams without me even having to initiate it. It’s just automatic now. I see a slice of bread that’s thinner than average, and I don’t think “oh, that’s not enough bread,” I think “oh, that’s probably 3–5 carb grams below normal.” Food IS numbers for me. If you’ve lived with diabetes for long enough, it probably is for you, too.

The lows…and the high
I’ve had three severe low blood sugar episodes that I can remember — two times I’ve had to be taken to the hospital, and one time I was fortunate enough to be helped by some good Samaritans on the subway. Those three incidents are the “lows” (ha ha) of my life with diabetes. They were scary, and I know they were terrifying for my loved ones, particularly my wife. In fact, they were probably much worse for her than me. Not to sound too morbid here, but I passed out — everything was solved when I came to. My wife had to face these crises alone.

But let me tell you about the subway incident. This happened around 2002. I was living in Boston and I had fallen into a bad habit of forgetting to have sugar on me. I was riding the subway to get to class, and I could tell my number was dropping. I planned to get off the subway, grab some sugar at the convenience store right out of the exit, and go to class. But I didn’t make it. As I was climbing the stairs, the low blood sugar won out, and I fell backward. That could have been a horrible day, but luckily for me several other people were also climbing the stairs, and they saw me. They came to me, and asked what was wrong. All I could say was, “Diabetic…need sugar.” They helped me to a seat and ran into the office next to the subway exit. All they had were sugar packets for coffee, but they were happy to offer them. I downed the packets and soon I was recovering.

That day was a low point, a scary moment. But it was also a beautiful moment. It was beautiful to see how those people came to help me. It was beautiful to see how much they cared about the health and fate of a stranger on the subway. And so that day was a low point and a high point, one I’ll always remember.

Lessons learned
Let me close with this: Diabetes has been a great teacher to me. Sure, I’d rather not have had it, but I can’t deny that I have learned some valuable lessons living with this condition. I’ve learned a great deal about the nature of balance and harmony, living as I do with constant attention to my body’s own balance. I’ve learned a lot about patience. That was a tough one in the beginning — I used to get really mad every time I had a high number, even when they were very rare. But over the years I have learned how to let go of those things beyond my control. Of course, blood sugar IS within our control, but the blood we JUST checked… That’s in the past. We DON’T control it anymore. And I’ve learned that freaking out about it does nothing good.

So that’s my 20 years of wisdom for you. It’s been an interesting relationship, diabetes. We’ve had our ups and downs, and I won’t cry when that day arrives that we part ways. But I appreciate the wisdom you’ve handed me through the years.

  • Diane

    It is 5 years for me. Did super great the first 3 years, have slacked off, but Scott, you have inspired me. Thanks.

  • Michael Cobb

    Thank you, Scott, very well written. I recently had my ten year milestone. I often compare it to having an uninvited guest–company that refuses to leave–and it’s always there shadowing me, taking the food and leaving me with the crumbs, capriciously dictating my exercise pattern, and even following me to bed. But I am an accountant & actually do love monitoring the numbers, and am also a lot healthier because of having to take care of myself. So your story really resonates with me; hope you’re writing about 30 years when I hit the 20 year mark.

  • Leanna

    Thank you Scott. I feel like being a type I diabetic has been an integral part of my life, and at times can be isolating. I have had diabetes for 26 years this November, and always wonder or fear when the first complication will occur. I struggle daily with the fear that I will not live long enough to see my kids grow into adults, and have their own families. This is a sentiment that I have struggled with for many years. I have fortunately being a pretty well controlled diabetic, but certainly have had my “lows and highs,” throughout the years. I always seek out other Type I diabetics to hear about their experience with this disease. I currently am working as a Certified Diabetic Educator and Nurse Practitioner, and usually see the worst of the worst diabetics. Keep up the good work and wish you all the best.