The Pricks

I usually notice my fingertips first. Sometimes, it’s while I’m doing my makeup, with my hands only inches away from my eyeballs. Other times, I’ll be looking at my nails, trying to mentally calculate whether I have enough in my checking account to splurge on a manicure this month. I’ll be going along, doing my thing, and suddenly my eye is drawn to them. Like little drops of ink, or tiny freckles, they line my fingertips. When I finish washing the dishes and my hands are wet and prune-y, the marks are even more prominent. Clearly visible are the holes in my skin; holes made from pricks felt six, eight, sometimes ten times a day, depending on the numbers blinking on the screen.

If it’s not my fingertips, it’s my waist. When I am putting on my jeans in the morning, or changing into my pajamas at night, I’ll see them. The little red dots trace along my waistline, usually only millimeters away from one another. Sometimes they itch, other times they bleed, occasionally, they heal with no issue. They never fade though, nor will they, as long as I continue to pierce my skin and insert the patches.

Sometimes, I admire them. They serve as a tribute to how hard I have worked to manage this disease. They represent the countless times I took a few precious seconds to care for myself. They remind me of pain, of burning, stinging, of blood that gushes too fast, or blood that trickles too slow, no matter how hard the finger is squeezed. They represent the strength I have endured. They showcase the courage it has taken. They remind me of every time unwanted attention was sent my way, of those who squirm and squeal at the sight of the red droplet the ink dots produce, of the questions, the never-ending questions that I constantly field. The inquiries as to why I am wearing a beeper in 2016, what is making the odd whirling noise as the life-sustaining drug is pumped into my system in mere seconds, how I can live a life like this (that one is easy; I couldn’t. I physically wouldn’t be alive). The dots along my fingertips tell stories, like a scar or a cast on one’s limb. They tell of the time an unfortunate drop in blood sugar occurred during a high school Spanish final. They speak of the shakiness. The needing to leave class, the almost passing out in the hallway, the feeling of one thousand juice boxes still not being enough. They tell tales of the highs; the tests missed due to blood-filled sites and spiking sugars, the angry words snapped in a moment of fogginess and sugar induced frustration. The inkless dots remind me of nights spent up, too afraid to fall into slumber where the coma lurks. They remind me of blinking my eyes groggily in the middle of the night, to find my mother, half asleep and head a mess of wild curls, piercing my skin and waiting for the comfort of a good number to send us both back to a peaceful hibernation.

They are always there though, one more constant reminder of the battle I fight and the failed organ I carry within my body. I dread the day I have to explain them to my children. I pray that it will not be something they are familiar with. My greatest fear is that they too are one day plagued with the marks. I hope that someday, they fade, not completely though. I yearn for the day they are faint enough to not be noticed, yet I know they exist, as a gentle indication of the battle I won.

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To Love a Diabetic

“C’mon babe, you need to test. Here, give me your finger. Oh, you’re low. Hang on let me get you a juice.” They say there are a million ways to say “I love you.” “Grab an umbrella.” “Here I made you some tea.” “You look exhausted, did you sleep well last night?” To me, “I love you” comes through in phrases like “you need to test your blood sugar.” “Did you take insulin for that yet?” “Want me to help you do your nighttime shot?” What may sound like mundane, or even nagging, questions to some are mutters of love and affection to me. To love a diabetic is to embrace their diagnosis.

I was diagnosed with my type 1 diabetes late for a kid – at age 16 – and therefore most of people in my life knew me both before and after my diagnosis. It wasn’t until I went off to college that I came to the upsetting and reality striking conclusion that everyone I met from here on out would only know me as a diabetic, not as the person I was before the shots and finger pricks.

When I first met my boyfriend, I was at a rough point in my diabetes care – trying to handle the pressures of school with the fluctuations of blood sugars and not allow one to get in the way of the other. It was like balancing on a high wire with your eyes shut; hard as hell and scary as can be. At first, I played off my diabetes like it was nothing. I concealed my pump, I tested my sugar in private, I dosed when no one was looking. It was that I didn’t want anyone to see me do it, it was more that I didn’t want that to be the only thing they saw about me. All that changed when I met Christian, however.

We had been dating maybe a week, in the very beginning when our relationship was just starting to blossom. After a long night of hanging out and working on homework together, I packed up my stuff to head back to my dorm room. As I was getting ready to leave, I felt it. The light-headed feeling. The confusing sensation that my hands were not attached to my arms and my legs were not attached to the rest of me. The cold sweats. The shaking hands. Christian looked at me, with his beautiful blue eyes full of concern, and said, “hey, are you okay?” I nervously laughed and said, “oh yeah it’s just my blood sugar; I think it’s low and I don’t have a juice on me.” He immediately grabbed my hand, slung my backpack over his shoulder, and said, “well c’mon. I’ll walk you back to your room and we’ll get it sorted out.” When we arrived in my single, I realized I was in fact VERY low (around 40) and one juice wasn’t going to cut it. I set my alarm for 15 minutes, guzzled a juice box, and told him I would be fine. “No. I’m staying until you’re safe enough to go to sleep.” He curled up in my armchair and assured me he would wake me when the timer went off. This continued until my blood sugar finally decided it was done with the games around 4am, at which point he unfurled himself from his position in the armchair, gave me a kiss on the forehead and left, assuring me that his ringer would be on and I was to call him if I needed anything.

Two years later and nothing has changed. He has taken on my diabetes with more strength and love than I could ever ask for. He truly wants to understand what is happening with my sugars, how we can fix them, and what he can do to support me. He knows the look I get when my sugar is high, and will gently prod me to test. He knows how to calculate my carbs and how much insulin I need to take. He keeps a stock of juice boxes in his room and can open one in three seconds, when my shaking hands are too weak. He stashes juice boxes in his car’s glove compartment and always has a bottle of water nearby in case of a thirst-inducing high. Most importantly, he is one of the only ones that truly knows my story. He knows the days when I’m miserable because of lack of sleep and high blood sugars. He knows how I fret about my A1C and obsess over whether or not to go back on the pump. He knows how to explain my diabetes, to friends, to his family, to random strangers that stare at me when I whip out a needle in the middle of a restaurant.

I know that he loves me. I know that my health is one of his biggest concerns and I know that he will do whatever it takes to make sure I am okay. I know that I can depend on him to help me in times of low blood sugars and highs. I know that, no matter what path I continue down in terms of my diabetes care, he will be there; holding my hand, with a juice box in his pocket.

A Blessing in Disguise

“But, you don’t look sick?” “Whoa! Did you just stab yourself with a needle?!” “Is that a pager on your waist?” “I had to get my finger pricked once. It hurt SO MUCH.” Comments like these hurt more than the finger prick I give myself 6-8 times a day. Having a chronic illness, in my case, Type 1 diabetes, is difficult in more ways than most people realize. Because there are no outward signs, unless you happen to catch me in the middle of an injection or see my insulin pump on my waistband, most people do not think it is that big of a deal. They don’t understand when you say your diabetes is the reason you didn’t make it to class that day. You get puzzling looks when you blame diabetes on your three hours of sleep. Professors sometimes look at you in confusion when you hand them your disabilities letter of accommodation at the beginning of the semester. Diabetes is silent to the outside world, but screaming every day in the mind of a diabetic. It is the thing that keeps them up at night, that determines every action they take, that causes them to pause and reconsider before the indulging in the spontaneity of a moment.

I am a type 1 diabetic. Diagnosed 5 1/2 years ago, at the age of 16, I am still learning and navigating my way around this invisible illness. I have honed my skills in finger pricking, shot distributing, and carb counting. I have developed a tolerance for blood work and a patience for long waits at doctors’ offices. I have learned more about my body and have become more in tune with it than ever before. More importantly, though, I have learned how to be a voice, a support for others, and the best version of myself that I could possibly be. Diabetes may have given me scars on my fingers, sleepless nights spent tending to low blood sugars, headaches, blood tests, and more stress than one should ever endure, but it has also given me so much more. It has given me a voice. It has given me the drive to educate, to encourage, and to empower other diabetics and non-diabetics alike. It has forced me outside of my comfort zones and into a world in which I never thought I would have experienced.

Prior to my diagnosis, I was content with the idea of attending college in my hometown, being fifteen minutes away from the comfort of home and a good meal, able to be on my own but still close enough to home. My diagnosis was a humbling and terrifying experience. Once a fiercely independent and confident teen, I suddenly found myself afraid to go too far from my parents, the ones who knew what to do if my blood sugars went awry. I could not remember the last time I felt so dependent on someone else, so afraid to live my life. It was during this time, as I sat in my dance studio, attempting to explain to those around me what my new normal consisted of, that I realized I needed to regain my independence. I recognized that I could sit back, let my diagnosis limit me from living a life I loved, or I could move on. I could take this disease, this silent and invisible cross I now had to bear, and use it as a tool. I could take my illness and turn it into my platform, develop my voice using the one thing I feared would hold me back forever. So I did.

I chose a college that I fell in love with, two and half hours and one state line away from home. Beginning on day one of freshman year, I educated. I talked about diabetes. I normalized it. I explained to my roommates what a high and low blood sugar was. I showed my RA where I kept my juice boxes. I let my friends watch me as I changed my pump sites. I taught them how to prick fingers and calculate carbs. It wasn’t to make my life easier. I was not trying to train a group of people on how to care for me. Rather, I wanted to make diabetes as normal as could be. I wanted to give my invisible illness a face and a name and a group of people in University Heights, Ohio that understood what it was.

I couldn’t just stop with my friends, though. I recognized that people in general don’t talk about their diabetes. I found an amazing online community and learned that many colleges have organizations for students with diabetes. When I realized my school did not have such an organization, I started one. I recruited diabetics and non-diabetics alike through emails, through conversation, and through happenstance. We were small, fifteen people at the beginning, but we met. We shared our struggles and stresses. We explained our invisible illness to those who wanted to learn. What started as one young woman feeling alone in her battle quickly grew as she did something so simple; talked about it. Before I knew it, at the beginning of my junior year of college, I found myself in the atrium of our student center, passing out facts about diabetes attached to lollipops, as people made those harsh comments that come with the ignorance about the subject, “lollipops?! Diabetics can’t eat candy!” I felt myself glowing with pride on the inside as I explained that was exactly the point of the movement; to prove that diabetics can indeed eat candy, and anything else they want, as long as they take insulin, and this is just one of the many stigmas that surround diabetes.

If I could go back in time to January 4th, 2011, I would. I would waltz into that Children’s Hospital of Pittsburgh emergency department exam room, where a scared and confused sixteen-year-old lays on a hospital gurney, with an IV in her arm and a feeling of her everything crashing down around her in her heart. I would dry her tears, hold her mother’s hand, pat her father on the back, and say, “this is a blessing. This will not break you. This will only lead you to the person you are meant to be. Just wait.” I would assure her that she will be okay. She will be great. She’ll learn so much and grow as a person. She will take on this battle with courage and grace. She will become a voice for those who are too afraid to speak of their disability. She will become an educator, an advocate, a symbol of strength and perseverance. She will break down barriers, disband myths, and combat ignorance with facts. She will use this diagnosis as her catalyst. She will have diabetes, but diabetes will not have her. She will be okay. And she is.