I never knew what I wanted to do with my life. People told me all along the way that I’d figure it out. In high school, in my undergraduate studies, and then again after I entered the “real world”. I’ve spent my days surrounded by the inspired. My brother is a political junky. He’s always wanted to be involved in public policy and knew from an early age that’s what he wanted to do. It drives him. My wife is an ASL interpreter. She found in her teen years she wanted to help the Deaf bridge the gap in communication. She’s immersed herself in the community, she even interprets for people who are both deaf and blind. She’s one of the top in her field. I’m so very proud of these people. They are successful, hard working, and driven. If I’m honest with myself, I’m also extremely jealous of these people. Not because of their success, or pay, or anything materialistic or tangible. I’m jealous because they’ve found their “WHY”. I’ve longed for that for my entire life, and for most of my life I came up empty.
If I can brag about myself a little bit, I am a smart, talented person. If you’re thinking that is the problem, I can not-so-humbly assure you it is not. I was in gifted programs from elementary school all the way through high school, and I made good grades. I would have said “great grades” here, but you know, I was a teenager once. I’ll leave it at that. The important take away is that I could’ve gone to most colleges, save the Ivy league. Opportunity was never the problem. I could have done any number of things.
And perhaps now is a good time to mention a major part of my story. I have had type one diabetes since I was 15 months old. But back in 1983 when I was diagnosed, there were no CGMs or pumps to identify others in the wild, there was no local JDRF branch that I was aware of, and there certainly wasn’t a diabetic online community bursting at the seams with support groups, advocacy groups, and those spreading awareness. I never went to camp, diabetes specific or otherwise. My mother, bless her, did the best she could to try and keep me alive in the dark ages of T1D care until she could pass along that lovely responsibility squarely on to my willing, capable, and mature shoulders. I believe we are still waiting for that moment in full.
Diabetes was never something that I carried the flag proudly for, not because I was embarrassed or unwilling, but I think as I look back on it now, it’s because I had no idea that was a thing. I never knew there were people out there advocating, surrounding themselves in the culture of type 1, sharing tips, making friends for life, and just being unabashed and damn proud to be a T1D who lives a good life, normal, or super normal. I thought that diabetes was just this crappy thing that I had, that no one else in my family did, that meant that I had to take a bunch of shots and not eat the stuff that I wanted. I never really purposely hid it from anyone because I was ashamed, I just didn’t want to talk about it, because I didn’t know there was a way to talk about it in a positive manner.
So I kept quiet and diabetesed on, trying to keep it as minimal a part of my life as I could. Isn’t that what we try and do with diabetes when we’re good at it? Shove it in the farthest corner we can. The only problem with that is it isn’t a long term plan. Diabetes management is more like playing whack-a-mole than something that just goes away. When your control is tight, it’s like watching someone who’s really good playing the whack-a-mole game smacking down those critters as soon as they pop up. Whichever hole they wanna come out of. Dawn phenomenon? BAM! No sir! Getting sick? WHACK! Uh-uh blood sugar-you stay the hell down!
Well let’s just stick with this weird analogy I’ve come up with for a second. So, after having T1D for about 15 years, being smack in the middle of high school, and getting handed off control not-so-gradually……..I sort of looked like someone pumped the whack-a-mole game full of quarters, stole the little foam hammer, and walked away. The mole popped up, looked around, got comfortable, made a sandwich, turned on Netflix and binged watched Mad Men. And it stayed like this for about 10 years. I took insulin when I felt symptomatic, drank quite a bit, and just generally lived life with as little care to diabetes as I could without constantly being in the hospital. Think consistent 10-12ish HbA1C. Not so good. I decided to grow up after college and take better control. I entered this so called “real world” with a fresh new college degree, a job at a major bank, and a stable home life. Times were good……or good-ish.
You see, I had 2 things working against me, 1 known, 1 lurking. The first thing was a manifestation of a deep seeded feeling I’d alluded to at the start of this blog. I hated my career. Don’t get me wrong, I wouldn’t trade having a steady job, good pay, and insurance for those who live less fortunate lives. I was fortunate, but there was a deep void in my heart. I wanted purpose. I wanted to feel like when I came home at the end of the day, I had impacted the world, even in a small way. But it had to be meaningful. I don’t know that I could have articulated this feeling as clearly back then, but I felt it deep within me. I yearned for more.
The second unexpected obstacle happened when I stepped on a landmine of physical ailments. Most were in large part due to diabetes complication, and some were just pure bad luck. Within a three year period, I had 6 surgeries, was sent to a digestive research center for over 2 months for testing, was in doctor’s offices more than I was not, and fell into a deep depression. I could name the laundry list of diagnoses that I was handed during this time, but for both our sakes I’ll just put it this way…..My life turned into a series of one health deteriorating disaster after another. I was bombarded. I was overwhelmed. I lost hope.
I dated a girl in college who had one of those cheesy art posters on her wall. Like one of those things that you buy at Pier 1 that has the inspirational quote on it with some landscape picture of a sunrise and two silhouettes off in the distance. You know those? Anyways, she had one of those that had a quote on it that I closet liked and have remembered ever since. It said “When things seem to be falling apart they may actually be falling into place.” It seems a little of that magic was in play for me. You see, because of my health complications I ended up leaving my job at the bank.
With my life turned upside down, I found some unexpected light. My wife got me started in this new group in my hometown Charlotte called ACT1. ACT1 stands for adults conquering type 1. Run by JDRF, this group is closed to only type 1 (not even spouses can join) and is only adults. ACT1 put me on a path that changed my life. First, I found the DOC. I had never experienced camaraderie amongst persons with diabetes before, and I embraced it fully. I saw, for the first time, the power of having others around you who share your fight. I dove deep down the rabbit hole. We volunteered at everything, we went to every meet up, joined every group, did everything we could to become more involved in the local T1D community. Being welcomed in and embraced healed me. Not that I didn’t have to deal with my health anymore, but now, I didn’t feel so alone. I had found my people. I fully believe they saved my life. They lifted me up when I was weak. It was easy to be inspired now. I wanted to help whoever I could. The power of making a difference in the lives of people impacted by T1D was the fire that I had been searching for. Someone had poked the bear.
Now that I was a man with a newfound sense of purpose, I wanted to focus my efforts. I wanted to mobilize my passion in a way that was more personal to me. That’s about the time that I took over FFT1. We had started FFT1, my brother, a few friends, and my family as an idea to host a single fundraiser. But I felt there was going to be more to it than that. FFT1, which started as Families Fighting Type 1, an ode to the first few families that started the organization, is on a mission to become the premiere charity in the Charlotte area for Type 1 Diabetes. We want to send local kids to camp, help out local newly diagnosed families with networking and other needs, start a college scholarship for local T1D high schoolers, and much more. The best part is, we are supported by our community, and give back directly to them. It is so rewarding to be able to interact so closely with those you are impacting.
FFT1 is still new, but growing. We’ve sent kids to camp, we’ve thrown some social get togethers, we’ve donated to some great organizations, but we have big plans in 2018. As for me personally, I’m glad I finally found my fire. It wasn’t what I thought I was chasing all these years, but it’s definitely been lit. I hope that the opportunities and the growth that I’ve experienced in the past few years with FFT1 and personally with the diabetes community continue to grow in the new year. So, I’ll leave you all with this. A quote from Ferdinand Foch, a French general in WWI. Fit to be on a Pier 1 artwork. Ferdinand said, “The most powerful weapon on Earth is the human soul on fire.” I’ve had my soul set on fire. Lookout world.