Diabetic Connect's Voices of Diabetes series gives members of the diabetes community the opportunity to share their personal challenges, insights, and life experiences with a larger audience. We hope these stories inspire and encourage you to find your own voice as a diabetes advocate. If you would like to share your story, contact us at firstname.lastname@example.org. Visit the Voices of Diabetes page on Diabetic Connect for more in the series.
Nick Masercola was diagnosed with type 1 diabetes in his early teens after his family decided it was time to see a doctor when, as he says, he “couldn’t go half an hour without peeing out the entirety of the Hudson River.” Sound familiar to anyone?
Nick went on to live in New York City and become the associate editor for the Juvenile Diabetes Cure Alliance a watchdog group that does independent analysis of non-profit organizations that fund diabetes research. We talked with Nick and he shared his experiences with diabetes, lessons he has learned, and information on the JDCA.
Tell us about your personal experience with diabetes. When were you diagnosed? What was your reaction?
I’ll preface this by saying I always feel kind of awkward talking about my experiences with diabetes, mainly because I feel I’ve had a very different experience than most. That, and some of my viewpoints aren’t the most…straightforward.
I was diagnosed the summer of 8th grade. The short version is I hit a point where I couldn’t go a half hour without peeing out the entirety of the Hudson River, and that’s when we decided it was time to go to the doctor. In 10 minutes (with blood sugar of 612), I was diagnosed as a type 1 diabetic.
In all honesty I didn’t have a big reaction, merely wanting to know what I had to do now (and in hindsight, I think it scared my parents a little that I seemed so okay with things). At that point I had figured something was wrong, so it wasn’t a shock that I had a disease, and I once had a friend with diabetes who seemed to do alright with it, so I could probably handle it.
I remember the day before high school I had to go in, meet my nurses, and give them my supplies. We chatted for a little, and they were nice women, but from the initial meeting all I can remember is one thing they said to me:
“We have a very supportive diabetic community here. They meet up with each other, help each other, and comfort each other when they’re low. They deal with their problems together.”
I remember feeling sick, my head running wild with images of pouting diabetics crying and drawing pictures of their emotions. I HATED the idea of support, of feeling like what I was going through was a massive burden, that I need someone else’s help. I know many people who find comfort in others going through the same thing as them—I generally don’t. So while I’ve embraced the disease, I’ve always felt this odd disconnect between the way people expect me to feel about diabetes, versus how I actually deal with it.
How did you get involved with Juvenile Diabetes Cure Alliance?
Luck and good timing. I had just graduated college and was in the terrible limbo between the college life and the real world (a problem compounded having majored in English), searching for writing jobs. During this search I came across a posting for the JDCA, who was looking for an associate editor.
Now, truth be told, since diagnosis I had kept up very little in the charitable diabetic landscape, so not only had I not really heard of the JDCA, I had only a passing familiarity with any other diabetic organization. So after I looked at their post I started not only researching their organization, but several others, and I found myself surprised at both the diversity of charities, as well as (what seemed to be) a disconnect between what they were doing versus what diabetics would like them to do. Most organizations didn’t seem to really be…well, organized.
Long story short: Believing in the JDCA’s principles, wanting to write as well as help the push for a cure for this disease, I applied. The rest is history.
There are a lot of groups around the topic of diabetes; what makes Juvenile Diabetes Cure Alliance unique?
A ton. Rather than expound on our virtues until this page is full, I’ll pull a small quote from our website for the generalities.
“The JDCA's mission is to direct donor contributions to the charitable organizations that are most effective at allocating funds to research opportunities that maximize chances of curing type 1 diabetes by 2025.”
- Our aim is a practical cure, nothing else. Our goal date is 2025, and we are the ONLY organization with a definition and a timetable.
- We do not solicit donations, and are funded entirely by the founder. As such, our mission will not be clouded by the need to sustain ourselves. Many charities are being run in such a way that very few of the funds collected under the guise of going to a cure actually go to such things. We want this to change.
- Consider us a watchdog. We want to be the voice of the donor for a cure, and help to change charity spending so that funds are directed to more promising projects. We do not believe in the “idealized” cure, or that diabetics will be able to return to a pre-diabetic state.
Long story short: Charities raise money for the purpose of a cure. People donate, expecting it to lead to a cure. We’re here to make sure this is what happens, and to let the voice of the donor be heard. We want to create an alliance of donors in order to strengthen their voices and demand progress.
What do you feel is the biggest challenge for people with diabetes today?
Depends. I have a somewhat distanced view in a way – quite frankly, I’ve had a very easy time dealing with my diabetes, but I’m also a control freak (Stalin would be envious).
I guess my answer is twofold. One major issue for diabetics is getting the care they need. Many diabetics are uninsured, or even with insurance can’t afford to cover the cost of medical care. This leads to the domino effect of developing worse and more expensive complications due to the inability to manage the first disease. And let’s not forget the countless thousands in other countries without proper medical care where diabetes is still considered a death sentence.
The other major problem is misinformation and the general public’s knowledge of the disease. Every diabetic has a list of things people ask them that are wrong and misinformed, and until diabetes is more well known, it will continue to be a hindrance to crafting better treatment and a cure. Not only that, but also many diabetics find that their doctors are not as well informed about the disease as they probably should be.
As I’m writing this the non-communicable disease summit is occurring, and I hope something good comes out of it to help diabetics and others suffering from non-communicable disease achieve better care around the world.
What is one lesson you’ve learned because of diabetes that sticks with you?
Let’s see…the importance of responsibility and self-control, the need to accept things that cannot be changed, the growing need for proper medical care for everyone, um…do I really have to pick just one?
Schoolteachers have nothing on the life lessons having diabetes (or any chronic disease for that matter) will teach you. Diabetes taught me to take control of everything that I can regarding myself, to be responsible for what matters to me. It may have started as my blood sugars, my H1C’s, and my general health, but it has evolved into something of a life philosophy for me. If you can do it, do it.
As for what I said about accepting things that can’t be changed, well, it’s pretty self-explanatory. I accepted diabetes very quickly, and even though it may be hard for some who are diagnosed, I encourage it. This was my thought process:
“Nick, you have a disease. It’s not going away. You can either manage it and live a good life, or choose not to, go blind, lose your limbs, and die.”
I know that it’s a bit harsh for most, but for me, that’s all the motivation I need. And while I work for an organization that believes in a cure, and while I too know one will come, it’s not here yet, and until that day arrives, you need to accept diabetes, along with anything else out of your power.
Most people spend their days complaining about things they cannot change, without being happy for all the things they can. Diabetes keeps me thankful for all the things I have control over.
What is the most challenging part of having diabetes? What is the most rewarding?
I’m always never sure what to say to this question, mainly because I don’t really see it as a separate part of myself anymore. I will very shortly be coming up on a decade with the disease (which makes me feel oddly old even though I only recently graduated college), and I’ve reached the point where I don’t really remember a “before” diabetes. It’s just a part of life.
Challenging? I would say the simple fact of having to worry about your health much more than your average person, and not even in the ways most people think about. Want to go for a jog? Without diabetes, you grab some water, headphones, and get going. With diabetes? You have the balance the tightrope of getting the exercise you want/need while keeping your blood sugar from dipping low, forcing you to eat candy or sugary drinks that completely negate the workout.
Rewarding? Hmm…I’m not really sure. I guess there’s some sort of “badge of honor” having a chronic disease, yet taking enough control of it so that it seems as if you don’t have it. But as for a specific, rewarding moment? I haven’t found it. Granted, it’s not like I see diabetes as a curse, but I’ve never experienced anything with it that’s made me want to jump for the moon. Then again, it probably helped a lot in getting me this job, so who knows?
I’m good, Lord knows I’ve been long winded enough. Advice for new diabetics: You’ll get the hang of it, even if it doesn’t seem like it at the time. To everyone, please check out the Juvenile Diabetes Cure Alliance, we’re trying to make a difference for diabetics.