Ding Ding ding. I reluctantly roll over in bed to my bedside table and turn off my alarming phone. The last scraps of night dreams leave my eyes, gutted by the loud, abrupt end of my sleep. This new day begins like all the others before it, by scrolling through the news updates and looking for a specific headline that would surely make international headlines. It would make my ordinary day an extraordinary one.
No headline today. That’s fine. Maybe tomorrow.
It is the end of July 2022 and marks my fourteenth Disability Pride month and the fourteenth anniversary of my diagnosis of type 1 diabetes. My six-year-old mind didn’t register the severity of my doctor’s findings, but I remember him telling me that “there will be a cure in ten years!”
When my Sweet 16 rolled around, it was actually more bittersweet because the promised healing didn’t materialize. I still had type 1 diabetes. (It’s okay to laugh at the pun!) My little 6 year old I thought it was all my fault that I had type 1 diabetes. I had thought that the decision to have that second bowl of Cheetos after school was the reason I became diabetic. Like many people, I have confused type 1 and type 2 diabetes.
Type 1 diabetes is an immune disease; those extra faux cheese puffs had nothing to do with it. In reality, an as yet unknown catalyst triggers the immune system to attack its own pancreas. The result is that the organ can no longer produce the hormone insulin.
Insulin is as important to staying alive as a beating heart. It allows glucose – the fuel in the food we eat – to enter our cells and provide the energy that keeps us breathing, moving and thinking. For most people, this wondrous process is child’s play. The healthy pancreas responds at lightning speed, pumping the precise amount of insulin needed to deliver life-sustaining glucose to every trillion cells in the human body.
However, type 2 diabetes is a by-product of unhealthy diet and lifestyle. The pancreas and body become overwhelmed, and the result is a condition called “insulin resistance.” Cells can no longer be fueled and people who develop insulin resistance may need extra insulin. Luckily for type 2 diabetics, committing to a healthy lifestyle can go a long way in turning things around, sometimes completely.
There is no such “silver lining” for type 1 diabetics. At least not yet. My body requires an external source of insulin, injected or pumped before each meal or snack 24/7/365, to keep my blood sugar levels in a safe range (average 80-120 mg/dL for most T1Ds). . A “baseline” insulin rate is also given to me as a constant drip through my pump to sustain my life.
It’s a balancing act that can be as tricky as walking a tightrope. Aside from being blindfolded and having random objects being flung at me out of nowhere. Insulin is a hormone, like cortisol, estrogen and adrenaline. Blood sugar levels are not only influenced by diet, but also by stress, emotions, illness and physical activity.
Too little of the hormone results in too much sugar circulating in my blood. It causes a cascade of inflammatory reactions that erode the health of my blood vessels, nerves, and heart.
Too much insulin causes my blood sugar to drop; My brain cannot function or think clearly. I get very dizzy, sleepy and can’t walk. Some diabetics can’t form a coherent thought and can speak gibberish if they can’t get enough sugar fast. I can usually say, “I need juice and I’ll wait 20 minutes”. I risk going into a coma if I don’t treat the depression right away. So the ubiquitous juice box or candy. When I sense a low coming, I reach for that sugar rush that eventually gets me back safely to center; albeit exhausted.
There are little annoying moments, like an inexplicable low just before I leave the house, so I have to tell that friend (or professor or colleague) that I’m going to be late because I have to get my blood sugar up first. Sometimes that can be 20 minutes; On other days it may take an hour.
Another is to change the location of my insulin pump (called an infusion set) every three days and look for a fresh patch of skin to “snap” into the sharp tip of the cannula to serve as my “insulin filling station” until the next day. to serve after tomorrow…if I need to repeat the process.
Another reason is unexpected slumps during the day that cause an overwhelming need for sleep. I can’t choose when that happens; only where I will take the inevitable nap. (I accidentally fell asleep on a piano once. I don’t recommend it.)
Or right now as I sit here writing and struggling with the assignment because my sugar is cranky today. (Napping in bed was better than playing the piano!) Sometimes I remember my blood sugar spiking just before an important conversation or a performance, causing dialogue to take flight and fly away. In contrast, a low leaves me on the sidelines, relegated to the rank of observer during dance class and watching my classmates enjoy mastering new moves.
Those little moments feel like the cumulative dripping of water on rocks and erode my confidence. I feel like I can never adequately explain how I feel; that I am a burden or that others feel uncomfortable or even irritated. Or the skepticism I sense from people who don’t quite believe I can follow my doctor’s orders to the letter and still have rough days. This is type 1 diabetes.
There are bigger moments, like hitting a rock bottom before an important performance and you can’t go on. Or go up for one infusion set Failure just before your first live performance since the pandemic began. Feel like you have the deadly flu as your body begs for insulin and your whole body aches as you stand in one place and pray to god you remember the words of the song.
The Greatest Moments. Urgent Nursing Visits. ER travel. hospitalizations. Trust your insulin pump to do its job when you’re just unlucky sometimes.
Maybe the small and big moments leave the same effect in the big plan of my life. The moment that comes after that is the hardest: forgiving myself for something that I can’t control but that’s happening to me anyway. Remind myself that there will always be people who will not understand; whose unfounded ignorance makes me feel less. Knowing that we are all beautiful for someone; every single part of us, even the parts that most people don’t understand. However, when you meet people who do, the best stories are based on it.
There is an incredible sense of relief when you begin to learn that you are not a burden to others with your disability. It is easy to know that this is true. It’s another thing to believe it entirely. It’s part of the journey I’m allowed to take, and all I can do is do my best. You, dear reader, can only do the same.
I was asked if I would choose to be diabetic if I had the opportunity to continue my life without being diabetic. My first instinct, to be honest, is no. I wouldn’t choose that.
But when I really think about it, I’m not me without type 1 diabetes. I know how the illness has shaped me. I know how it feels to appear “normal” to the casual eye, but something unseen touches every part of your life. You have no idea what a person is going through just by looking at them. I know this because I’ve lived it and I live it every day. Because of this, I forgive others more. more compassionate. I don’t think I’m always proud of my disability, but I’m proud of the person I am with it.
Sounds illogical, right? You can Be thankful for the things that suck. What a crazy thought. Perhaps this is a paradox that we all need to learn in one way or another in order to live a truly fulfilling life.
If I could choose not to be diabetic, I would write this article differently. That I may not have cared about what it means to be kind or found joy in working towards a more accessible world for all. I don’t know if I would enjoy her company that much. She would likely take things more personally and choose to believe that everything was against her. Don’t get me wrong – what I write here is by no means perfect. But she has hope. That alone would make me choose diabetes a thousand times over.
Some ordinary day I’ll perform and feel good and not have to worry about remembering the words. For someone else, this might be something that is readily available to them. For me it’s something to hope for – and that makes something ordinary something remarkable. Everything from waking up feeling good to finding people who love every part of you, including your disability (which you don’t always love) – feels more rewarding when it’s not readily available to you.
I hope for the little moments. I hope for the big moments. I wake up with hope. I go to bed with hope. I hope for everything