BWW Blog: Hoping for a Headline

Ding, ding, ding. I roll over grudgingly in bed, toward my nightstand and silence my alarming phone. The last wisps of the night's dreams leave my eyes, eviscerated by the noisy, abrupt end to my sleep. This new day begins as all of the others before it, scrolling through the news updates, scanning for a particular headline that surely would make international news. It would make my ordinary day become extraordinary.

No headline today. That's alright. Maybe tomorrow.

It is late July 2022, marking my fourteenth Disability Pride month and the fourteenth anniversary month of my being diagnosed with Type 1 Diabetes. My six year old mind did not register the gravity of my doctor's finding, but I do remember him telling me that "in ten years, there will be a cure!"

When my "Sweet 16" rolled around it was actually more bittersweet, because the promised cure had failed to materialize. I still had Type 1 Diabetes. (It's okay to laugh at the pun!) Tiny six year old me thought it was all my fault that I had Type 1 Diabetes. I had thought that opting for the second bowl of cheetos after school was why I became diabetic. Like many people, I confused Type 1 and Type 2 Diabetes.

Type 1 Diabetes is an immune disorder; those extra artificial cheese puffs had nothing to do with it. In reality, an as yet unknown catalyst triggers the immune system to attack one's own pancreas. The result is that the organ can no longer produce the hormone insulin.

As essential to staying alive as a beating heart, insulin is what allows glucose--the fuel in the food I eat--to enter our cells and provide the energy that keeps us breathing, moving, thinking. For most people, this miraculous process is a no-brainer. The healthy pancreas reacts with lightning speed to pump the precise amount of insulin needed to deliver life sustaining glucose to all of the trillions of cells in a human body.

Type 2 Diabetes, however, is a by-product of unhealthy food and lifestyle choices. The pancreas and the body get overwhelmed, and the result is a condition called "insulin resistance". The cells can no longer be refueled and people who become insulin resistant may require extra insulin. Luckily for Type 2 diabetics, committing to a healthy lifestyle can do much to turn things around, sometimes even entirely.

There's no such "silver lining" for Type 1 diabetics. Not yet anyway. My body requires an external source of insulin to be delivered via injection or pump before every meal or snack 24/7/365, so my blood sugar levels stay in a safe range (on average, 80-120 mg/dL for most T1Ds). A "base" rate of insulin is also being given to me as a constant drip through my pump to sustain my life.

It is a balancing act that can be as precarious as walking a tightrope. Except that I am blindfolded and random objects get hurled at me out of nowhere. Insulin is a hormone, like cortisol, estrogen and adrenaline. So blood sugar levels are not only impacted by food, but also 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 level to plummet; my brain is unable to function or think clearly. I get very dizzy, sleepy and cannot walk. Some diabetics cannot form a coherent thought and may talk gibberish if they cannot get sugar quickly enough. Usually, I can say: "I need juice and to wait 20 minutes". I risk slipping into a coma if I don't treat the low immediately. Thus the ubiquitous juice box or candy. When I feel a low coming on, I reach for that sugar hit, which ultimately brings me back safely to center; albeit an exhausted one.

There are small irksome moments, like inexplicably going low right before leaving the house, so I must tell that friend (or professor or co-worker) I will be late because I must first get my blood sugar level to come up. Sometimes that may be 20 minutes; other days it may take an hour.

Another is changing my insulin pump site (called an infusion set) every three days, looking for a fresh spot of skin to "snap" in the sharp point of the cannula to serve as my "insulin filling station" until the day after the day after tomorrow...when I must repeat the process.

Another is unexpected plummets during the day, causing an overwhelming need to sleep. I don't get to choose when this happens; only where I'm going to take the inevitable nap. (I have accidentally fallen asleep on a piano once. I do not recommend it.)

Or right now, as I sit here writing, struggling with the task because my sugar is capricious today. (The nap in bed was better than the piano!) Other times I recall my blood sugar going high just before an important conversation or performance, which makes dialog grow wings and fly away. In contrast a low leaves me sidelined, demoted to the rank of observer during dance class, watching as my classmates enjoy mastering new moves.

These small moments affect me like the cumulative dripping of water on rock, eroding my confidence. I feel I can never adequately explain how it all makes me feel; like I'm a burden or that others feel uncomfortable or even irritated. Or the skepticism I sense from people who don't quite believe that I can follow my doctor's instructions to the letter, and still have hard days. That is what Type 1 diabetes is.

There are larger moments, like going low before an important performance so you can't go on. Or, going high because of an infusion set failure right before your first live performance since the beginning of the pandemic. Feeling like you have a fatal case of the flu as your body begs for insulin, and your whole body aches as you stand in one spot, and pray to God you remember the words to the song.

The biggest moments. Urgent care visits. ER trips. Hospital stays. Trusting your insulin pump to do its job, when sometimes you are just simply unlucky.

Perhaps the small and large moments leave the same impact in the grand scheme of my life. The moment that comes after is what is the hardest to carry out: forgiving myself for something I cannot control, yet still happens to me. Reminding myself that there will always be people who won't understand; whose unfounded ignorance will make me feel less. Knowing we're all beautiful to someone; every single part of us, even the parts that most people don't understand. When you meet people that do, though, that is what the best stories are founded upon.

There is an unbelievable sense of relief as you begin to learn that your disability doesn't make you a burden to others. It's easy to know this to be true. It's another thing to believe it entirely. That is a part of the journey that I get to walk, and all I can do is my best. You, dear reader, can only do the same.

I've been asked if I would choose to be diabetic if I was given the option of re-living my life without it. My first instinct, in honesty, is no. I would not choose this.

When I really think about it, though, I'm not me without Type 1 Diabetes. I know how the disease has shaped me. I know what it feels like to appear "normal" to the casual eye, but have something unseen touch every part of your life. You have no idea what a person is going through by just looking at them. I know this because I've lived it, and I live it every day. Because of this, I'm more forgiving to others. More compassionate. I don't believe I always have pride in my disability, but I do have pride in the person I am with it.

It sounds illogical, doesn't it? You can be grateful for the things that suck. What a crazy thing to think. Perhaps this is a paradox that we all have to learn one way or another to have a truly fulfilling life.

If I could choose to not be diabetic, a different me would be writing this article. That me may not have cared about what it means to be kind, or found joy in advocating for a more accessible world for all. I don't know if I would enjoy her company that much. She would probably take things more personally, and choose to think everything was against her. Don't get me wrong - the me writing this is not perfect by any means. But, she has hope. Just with that, I would choose diabetes a thousand times over.

One ordinary day, I will perform and feel good, and not worry about remembering the words. To someone else, that might be something they have at their disposal at any time. For me, it is something I can hope for - and that makes something mundane into 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 is not so easily at your fingertips.

I hope for the small moments. I hope for the large moments. I wake up with hope. I go to bed with hope. I hope for it all.

Perhaps that is what makes my days extraordinary.