We all know there are lots of other people out there with diabetes, but who are those people? How do they deal with their diabetes? What challenges have the faced, and how? Diabetes Self-Management talks with one of the millions of Americans with diabetes to uncover both the common threads of diabetes and also what sets Scott Coulter apart.
Scott is a Philadelphia-based musician who has had diabetes for the past 22 years. He is a member of the organ funk trio Get Happy and a member of the Dirk Quinn Band. In 2014, he made his first appearance with the Country-Americana band The Wallace Brothers at the Philadelphia Folk Festival.
DSM: Tell me about your diabetes.
SC: I was diagnosed when I was 15. It was a routine checkup, and the doctor noticed slightly elevated blood sugar. She very cheerfully told me, “Oh, it looks like you’re diabetic,” and then walked out of the room. It wasn’t the best way to deliver that news. My mom and I were stunned. Anyway, I didn’t go on insulin for another several months.
Once I was on insulin, the adjustment was fairly quick. And before long I started to have a very philosophical relationship to the condition, thinking about the lessons it could teach me about balance, awareness, and mindfulness. On a practical level, I was pretty careful about my blood sugars from the start. I think because I was older, I never had to fight with my parents about it. I was in charge of my own management, and so it was never something I felt the need to “rebel” against.
DSM: What helps to keep you motivated to care for yourself and your diabetes?
SC: I have a wonderful wife who I want to be here a long time for. That’s number one.
I also depend on my hands for a living. I play keyboards, and so my physical body has to be in good shape for that. I can’t mess with neuropathy — it could end my career! And playing music is something that has been with me since I was a baby! It’s absolutely my passion, and something that is absolutely irreplaceable.
DSM: What leads to burnout for you, and how do you cope with that?
SC: I get burned out when there’s even a hint of some other health problem. I know this sounds a little whiny, but there’s a part of me that always say, “Hey, I’ve got a major, life-long chronic condition! I don’t need any more health concerns, OK?” And that comes up for me even when it’s something as minor as the doctor telling me I should lose a little weight (which I should).
Meditation, music, and talking to my loved ones, particularly my wife and mother, are what help me the most with burnout.
DSM: What (tool, device, person, book, etc.) has made managing your diabetes easier?
SC: Without a doubt, short-acting insulin! I was on the old Regular insulin for the first four to five years of life with diabetes, following a set meal plan, eating at scheduled times, the whole thing. We made it work, but it wasn’t always easy. And I can tell you as someone who has spent some time on the road as a musician, it would be nearly impossible to keep musicians’ hours and do that. When the combination of short-acting and Lantus came into my life, the freedom was simply amazing!
DSM: What is the biggest drawback to having diabetes?
SC: The biggest drawback to having diabetes, for me, is the fact that you never get to take a minute off! There are times when I wish I could just stop calculating for a minute, turn off that little monitor in the back of my head that’s always going, always checking to see if I feel low, always wondering what my number is, always thinking about how every little thing will affect my blood sugar.
I’m lucky that I haven’t had to face any major complications, and when and if that day comes, my answer will undoubtedly change. But right now, I’d just take a few vacation days from diabetes.
DSM: What piece of “diabetes advice” would you most like to share?
SC: My best piece of advice is the one I constantly have to tell myself: Let it go. Diabetes is what it is. For all of us, it’s here, and there isn’t anything we can do about that. What we can manage is our relationship to it, and how we let it affect our happiness, our relationships, and the rest of our lives. High numbers will happen. Hypoglycemic events will happen. Complications might happen. In the end, we can’t change those events. But we can let go, breathe, and stop adding extra stress to the pain we are experiencing. That’s the thing: We usually take the painful experience, and then add stress to elevate and elongate that pain. But we do it without realizing it. If we can simply experience the pain without grasping onto it or fighting against it, but simply experience it and let it go, we can live better lives. And maybe someday, I’ll actually be able to do that myself.
You can read more about Scott at www.diabetesselfmanagement.com/blogger/scott-coulter/.