Not Perfect Anymore
Twenty one years ago on Saturday, November 14, my mom took me to the doctor in Bartlesville, OK. For weeks I had been drinking gallons of water a day, with no end to my literal unquenchable thirst. I had wet my bed a couple of times, probably used the restroom about 15 times a day, and lost somewhere around 15-20 lbs. I woke up on November 14 after vomiting all night long. Within five minutes, Dr. Paul McQuillen saved my life and diagnosed me with type 1 diabetes. Little did I know at 9 how my entire life would be shaped by living with a disease that is managed every single minute of my every single day (I guess it seems obvious when I put it that way).
My parents helped me manage it when I was 9, until about the age of 14 or 15 when I wanted a little more independence. Perfectly acceptable because it wouldn’t make sense to send me off to college at 18 and expect me to figure it all out then. I often hear parents talk about “teenage rebellion years” with type 1. I have no doubt this is truly the case for some, but for me, it was not at all a rebellion. I have never really hated type 1 diabetes. I truly wanted to be able to take care of it all on my own and prove to people that it was easy.
I now call myself a recovering perfectionist. So one day I just decided to stop caring about it. After working my butt off trying to do it all on my own, after following the “rules” of taking care of it how you are “supposed” to, I still did not realize nor accept that despite anyone’s best efforts, diabetes makes up its mind to do something different. At 15, I gave up. It wasn’t that I hated it. I hated myself because I couldn’t do it. It was not rebellion. It was feeling like a failure and I was too overwhelmed. And I am not the type to ask for help, which is still one of my biggest weaknesses.
I got over that a year or so later when someone finally told me that you can’t control everything. I started taking it one day at a time, sometimes one hour at a time. Instead of looking for a perfect A1c as a goal, I started looking at my whole outlook on what is realistic and how doing your best is just how it sounds: your best. There will be days you literally throw a glucometer against a wall and break it (but that’s okay because who doesn’t have at least five of those?).
There have been days I have cried for my husband because I have seen the look in his eyes when I am finally coherent enough coming up from a low blood sugar and all I can think is “Shit, what did I say to you and how badly did I yell at you and try to convince you I was just fine, all while you were trying to save my life?” The worry on someone’s face that you love so very much is enough to put it all in perspective that this disease is so very serious and can have consequences that can take your life. He feels every single high blood sugar sick day, hospital trip, low blood sugar and even all the moments where everything is great. This disease is not just mine. He lives with it, too.
Fast forward several years of working on accepting that I have a disease that has a mind of it’s own. I feel like I finally climbed out of that hole of impossible perfection on a beautiful September afternoon in 2014 when I crossed my first finish line in Lake Tahoe at the JDRF Ride to Cure bike ride. I had been training for two solid months to prove to myself that I absolutely could do something that I have no doubt people thought I couldn’t, shouldn’t and wouldn’t do.
When I moved to Oregon I started meeting people with type 1 that go on multiday backpacking trips, do things like Ride Across America, rock climb, run marathons, Ironman competitions and they all have type 1. No one thought I couldn’t, wouldn’t, and shouldn’t do it more than me. I have been so incredibly blessed to have found a community of inspiring people who live with type 1 diabetes. And I mean it, they LIVE with it. I just had a friend say that he has found a great group of people and job where he can do what he loves all day. He said, “I have found my tribe” and that is how I feel. I have found inspiration in a group of people who all have one common goal of curing type 1 diabetes. They are my tribe, my family.
But I cannot help but wonder if we would all be a little lost and a little sad if we had never been diagnosed with type 1 diabetes. I have always been one to take the long road to get wherever it is I am going. It sucks that I had to do that with a disease that can have very serious consequences. I am thankful every day that those moments I pushed back and learned things happened and I am still alive to tell about my journey.
Type 1 diabetes sucks, it truly does. Without it, I would probably be a disorganized mess. I have routines that I follow very closely but I manage to have so much fun doing it. I am in the best shape of my life because I discovered how a bike can change the world, or at least mine. I picked up that bike because I wanted to do a JDRF Ride to Cure. So, thanks, type 1. I have met some of the greatest friends I would never know existed because of type 1. I have been so inspired by every single one of them. I have found my tribe. There is nothing like a JDRF Ride to Cure weekend and I can promise that my life is forever changed and better because I went to Tahoe in 2014. All the highs, all the lows, all the accomplishments that take 100 times more work, are understood in my tribe.
These people are my family. I love them so very much that the words are not even in this universe to begin to tell you about them. Selfless, courageous, brave, fun, loving and inspirational are just a few of the words that come to mind. They help keep me out of that hole of impossible perfection. They help me appreciate that my outcomes could have been very different through my long roads to get where ever it is I am going. The highs and the lows. I ride for every single one of these people. Thank you, type 1 diabetes, for helping me find my tribe. Thank you for helping me discover that nothing is perfect. Your best is the best. This carries over into everything, not just dealing with type 1 diabetes (T1D).
That said, there are changes coming. In these 21 years with type 1, there have been some incredible changes in treatment and research that brings out more questions that are hopefully unlocking the cure for type 1. I have never seen or imagined the things that are currently being tested in clinical trials. These things are tangible. And they are coming. I am typing through tears as I am thinking of the day I can sleep in, sit down to eat without counting a carb, drink a beer and stay out as late as I want with plans to climb a mountain the next day and never have to stop because type 1 is doing its own thing again. Maybe I will climb two mountains.
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