Seeing the diabetes online community (DOC) speaking up about diabetes has opened my eyes to a lot of things. The management goals individuals seek vary greatly. The processes to reach those are just as diverse. One thing that has really struck a chord with me is realizing my childhood with type 1 looked very different than most of what is posted today. My brother and I were both diagnosed at age 4. The types of food in our kitchen changed, friends joined us in volunteering and congressmen became middlemen in our fight for better type 1 protocol in schools. That might be where the similarities stop. There were bad days, but diabetes never engulfed us. It was dealt with and managed, but it wasn’t our lives. To be honest, it was talked about very rarely in our home. As a child, I labeled myself an expert wanderer and future tree house architect. I dreamed of turning whimsical ideas into reality, while never having to leave the woods. Once my brother, Hall, accepted that he could not become a fish, he spent his childhood finding, catching and cooking them. That’s all he wanted to do—all day, every day, forever. Big, realistic dreams … we know.
We might not have been normal, but diabetes was not the thing making us unique. Shoes often weren’t worn even though doctors warned there would be slow healing. Knowing what’s underfoot makes you appreciate the land you walk on. We sliced our feet open and quickly learned we should look down a bit more often. You don’t grow up clumsy if the consequences include pain. Birthday cake wasn’t skipped for the sake of stable blood sugars. Regardless of how messed up it is, sugar is a part of American children’s celebrations. We ate it and spiked, then corrected and never gave it another thought. Sleepovers were accepted based on excitement, not the parents’ complete understanding of diabetes. To experience whispered conversations huddled under cardboard forts is incredibly important. I’d go to bed a bit high, but my friend’s parents were never asked to enter the world of midnight testings. We were just wild kids, allowed to do as we pleased as long as juice and granola bars were along for the ride. I have supreme confidence in my ability to travel alone and I’d guess it has something to do with being given a small dose of real responsibility as a young child. As an adult, this freedom has transferred into chasing my dreams with wild abandon. I understand risk. I understand consequences. These lessons were neither quick nor easy.
Knowing this and understanding how many are aghast by it, I’ve come to a realization that keeps me up at night. It is one that most people aren’t seeing because we are too engulfed in the bombardment of information to be better! stronger! perfect! that our society delivers. It is one that parents may chose to discredit because its truth scares them. It is this: Type 1 diabetes is not our biggest limitation. An amplification of fears by our parents and doctors is.
Parents are protective. Doctors deliver harsh warnings. Neither of these things should change, but it is important you understand the consequences and reaches of those actions. They can easily become more than necessary; creating larger mental problems than diabetes creates physical ones. It most likely comes from the advances in technology and the ability to monitor our numbers to such an extent. Most everyone was on NPH when I was diagnosed. You did two shots a day. It spiked every so often and that’s when you ate. Endocrinologists suggested you test four times a day, at meals and bedtime. New technology is allowing the opportunity for pinpoint accuracy, but also telling us in blatant terms how far away from perfect we are.
The ease of sharing personal news enhances this problem as well. A caretaker’s requirements have not changed. You must know your child’s low tendencies and the actions required to help them. Developing a personalized system you are confident in is a task far larger than any human should have to face. The good news is, children are hospitalized far less today than they were when I was young. Smarter insulins have been developed. Education is becoming more refined. Tools are better crafted. Awareness is slowly creeping up to an acceptable level. But … we are also aware of every single instance of bad. While knowing these realities allows us to give support and learn for a safer future, it also instills a crippling fear.
I do not begin to think I know what is right for your family. I am not suggesting you take the same risks I do—certainly, don’t take any mindlessly. What I am asking is that you evaluate where your concerns come from and what is supporting them. Many will be valid, but the outliers are what put you or your child in an unnecessary safety bubble. Each time a child is told the risk is too high for them to play that game/travel to that place/go after that unknown, they are being told their diabetes makes them incapable of reaching a dream.
This is the thing that makes me sick with sadness. There are people stopping people with diabetes from living how they want to, without allowing room for any error or growth. Nothing is too much or off limits for a person with diabetes as long as proper preparation takes place. I have certainly stopped short of summits, turned kayaks around and even declined requests for exploration all together because my body just wasn’t having it, but to go through all of your days stuck in a safe zone is to not live life at all. You may hear all of this and think I am of this opinion because I have never experienced the terrors of this disease. For the record, if you had a “How diabetes is Horrific” list, I’ve most likely checked off every box.
The responsibility of being human is to live the best life we are able to live.
If even half of us lived out our lives to the full extent of our potential, the world would be a place of unimaginable excitement and fulfillment. Every person in this world is passionate about something. If you think back to elementary school, you’ll remember being asked at some point what you wanted to be when you grew up. What we answered on that construction paper that would hang proudly along hallways were our passions verbalized. An architect amongst trees. A master of all things fishing. These were honest dreams unfiltered by the world telling us what our limits were and who we should be. In allowing this disease to be the controller of your life, you are stopping those dreams before they have a chance to be tested.
We don’t need to only thrive as people with diabetes. We can thrive as humans. Every time someone wakes up, they are facing a world that holds tremendous risk. Walking your dog. Driving on the highway. Studying abroad. Each of these could end in disaster for any person out there. Yes, we need to put in enormous amounts of time and effort beforehand, but when given the opportunity to explore our world without excessive limitations and safeguards, we step up to the challenge. I promise. By the time you read this, I will be back in my favorite jungle and continuing work on one of the world’s most sustainable architecture projects. I’m especially excited this time because my brother finally gets to join me and experience the site. Turns out when you are one of the most coveted professional fishing guides in the Gulf, you get winters off … Live passionately and chase your dreams. You deserve it.
Read more from Carter HERE.