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A brief, yet haunting recollection of a life of a diabetic.
1. In a camper on the back of my dads little red truck, Christmas Eve, in the Redwoods. We’re on a road trip to Mexico, on my dad’s first sabbatical ever – 3 months off for 5 years work. I’m 9 and I can’t stop peeing, and eating and drinking water. My dad (a family doctor) asks me questions: “does it hurt when I pee?” “do I crave any certain food?” “do I feel tired all the time?” I hardly sleep that night because I’m up drinking water. I remember how amazing ice-cold water from an original Nalgene tastes, letting it run over my chin and down my neck and I can’t get enough no matter how much I drink. The next morning we go to the hospital in Eureka, CA. A doctor with big glasses pricks my finger and we wait hours to be told that my blood sugar is over 600 mg/dl. They ran the test three times. My dad was right, it’s type I diabetes. My mom starts crying. My brother is bored. I’m just confused.
2. They make me spend the night in the hospital. I have an IV in my arm. My mom sleeps in the hospital bed with my while my dad and brother stay in a motel. I’m not allowed to have regular hospital food and everyone gets really worried that I may have gotten regular, instead of sugar-free, jelly on my pb&j. I play video games, original Mario (we weren’t allowed video games at home.) I read the Berenstain Bears. I’m not allowed to leave the hospital until I prove I can poke myself on my finger and check my own blood sugar. Everyone leave me alone in my hospital room to practice. I’m terrified of needles. It’s weirdly dark in the room. It takes half an hour but eventually I do it and I’m allowed to leave. My mom tells me I’m brave.
3. The first meal I have out of the hospital is breakfast at the motel. We all marvel at how many grams of carbohydrates are in the little packets of jam and I remember that there were 56 grams of carbohydrates total in the meal. It sounded like so many. I was in what’s called the “honeymoon phase” of my diabetes, where my body accepts insulin really well and uses it very efficiently. I only had to take 2 units of humalog for the whole meal. My dad says “1, 2, 3, POKE!” when he gives me my injection and it becomes a necessary part of the process. I couldn’t do it myself yet.
4. I need to tell someone, so I call my best friend at home and tell her. She says she hopes I get better. I tell her I never will; there’s no cure. We awkwardly hang up and my mom reassures me that my friend’s mom, a nurse, will explain.
5. Since we didn’t get to finish the road trip, we go visit my grandparents and we’re there for my 10th birthday. I ask for chicken pot pie for my birthday dinner. It’s hard to calculate how many carbohydrates are in the crust and it’s hard to explain my diabetes to my grandparents. (Unrelated: I accidentally say “shit” in front of my father and get in trouble. My grandfather teaches me to play poker.)
6. I’m 11, I just ate a huge dinner and am very full but my blood sugar is low so I have to eat more. I’m crying and asking my parents “can’t I please just have one day off?” and they say no. My mom’s crying too. Shortly afterwards my brother buys me a punching bag for my birthday because I feel like I need to hit something all the time, I’m so angry at my diabetes. This is when I learn what the words chronic and incurable mean.
7. I see a doctor, two towns away, who keeps me waiting more than 45 minutes just to tell me that I’m not doing good enough. She asks me why my numbers are bad and I don’t know. She tells me I won’t live as long if I don’t get this under control now. She’s type I too, and she says if she can do it I can too. I cry after all of our appointments.
8. When I’m 11-almost-12 I go into public school (I was mostly homeschooled until then.) I keep snacks in the teacher’s cabinet for lows, and some of the other kids say how lucky I am that I get to eat sweets all the time. I tell them I don’t get to, I have to. They don’t think it’s fair. I go back to homeschooling for a while after that.
9. When I’m 13 I go to public high school. I have to meet the school nurse my first day and she takes me to my first class, late. It’s embarrassing. A couple weeks later one of the assistant principals pulls me aside at lunch and says a student told her I was injecting myself at lunch. I said, defiantly, that of course I was. A memo goes out to all the school officials later that week, reminding them that diabetic students are allowed to inject themselves with insulin at lunch. I think I’m the only diabetic at my school. (You know, it’s funny but I don’t remember the first time I injected myself. You’d think I would.)
10. I’m 16 and staying over at my boyfriend’s house while his mom and stepdad are out of town. We sleep in and I wake up with a really low blood sugar. I’m sweating and I try to take off my sweatshirt and then lose consciousness for a minute. I come to and repeat that I’m too hot and need to take my sweatshirt off and then pass out again. My boyfriend makes me get up and go upstairs to eat something, since I refuse to check my blood sugar. I’m angry with him for supporting me up the stairs even when he catches me when I start to fall. I tell him I don’t need his help. When I finally drink some juice and start to feel better I realize I would have died if he weren’t there. I can’t thank him enough. He says that it’s no big deal, what was he going to do? Leave me there? I wonder how many times I’ll need someone else to save my life.
11. For my senior project I want to do a Walk for Diabetes at my high school. I speak at an assembly, get all the paperwork filled out and campaign at lunches. It looks like its going to be a big success until the principal gets wind that I’m going to do it during school hours. I go to his office and he says I have to change it to after school. I’m scared of him and agree. It’s the week of the event and after months of planning it’s ruined. Something like 10 people show up, hardly anyone with donations or pledges. I’m less disappointed than I thought I would be, and I have fun walking around the school track with my friends. I forget that I’m there because of my diabetes. I wonder if anyone else did.
12. I meet a girl at an info session for my future college who’s also type I. Our parents hit it off, but we don’t. I have lunch with her once during the first week of classes and we hardly talk. Turns out we have nothing in common.
13. I take nutrition and get in arguments with my professor all the time about the macronutrient composition of various foods. I know how many carbs are in an apple because if I didn’t my blood sugar would spike every time I ate one! But I have to go by what the book says. I decide nutritionists are all quacks, like the swami who told me he could heal my diabetes with his special massage stick or the chiropractor who told me that an adjustment might be the cure. I get angrier and bitterer about my diabetes than I’ve ever been, and I give up hope of a cure ever being found, if these are the idiots working on it.
14. Junior year I meet a guy with diabetes who is in terrible shape, drinks all the time and eats crap. He has perfect blood sugar readings and hardly takes any insulin. It’s hard to be friends with him, but we bond over our dysfunctional pancreases (pancrei?) and our newfound love of rock climbing.
15. I get a tattoo on the inside of my right wrist with the medical alert symbol and the words “DIABETIC, INSULIN DEPENDENT”. I’m very careful about the spelling. I find that the first reaction people usually have to my tattoo is to ask “are you really diabetic?” to which I reply, “no, I just thought this looked cool.” #sarcasm
16. I’m sort-of, not really seeing this guy. I’m at a party at his house and my friend whispers “did you see his roommate eating glucose tablets? I didn’t know he was diabetic.” I didn’t either, even though I’d known him for 3 years, spent a lot of time at his house and worked with him for a whole semester. I’ve gotten into feminism and I think about the different ways men and women deal with diabetes. If men hide it more because they don’t want to seem weak or if women hide it more because they don’t want to burden others. I want to ask him about it, why he keeps it a secret, but I never do. I still think about him sometimes and wish I could tell him it’s ok, that he doesn’t have to be ashamed.
17. Its senior year and I suddenly realize that the reason I picked my major, Molecular and Cellular Biology, was only ever to figure out why I got diabetes and how to fix it. After my last biology course for my major is done, I’ve learned everything I wanted to know, but don’t have the answers I need. I never want anything more to do with biology or chemistry. I feel like I’m waking up from a dream in which I was capable of curing diabetes on my own and was on my way to doing so. I realize how lost I am
18. After college I go to Argentina for three months. I take enough supplies with me for the whole trip, along with a signed letter from my doctor in case I get in any trouble at the airport. It’s hard to handle all my medications on 30-hr bus rides. I’m taking a lot more insulin than normal because Argentine cuisine is mostly bread.
19. I hop into Bolivia for a few days and a man at a hostel puts my insulin in a freezer. I frantically tell him that it’s all destroyed: “las proteinas estan muertas”, ” la insulina no funciona nada mas.” He tells me that I just have to drink the piss of the llama; I watch myself jump across the counter and strangle him (like in a bad movie I snap back to reality and realize he’s still talking.) I yell. I cry. I cancel my plans for the next few days. There’s very little Internet access in the small town so I go to a pay-by-the-minute place and try to reach my dad, my doctor, anyone. I go to the pharmacy and try to find out what they have and how it compares to what I usually take. I don’t know very many medical terms in Spanish so communication is hard. I try to google things but the Internet keeps going out and all the sites are in Spanish. It’s over 100° and I feel like I’m walking around in a haze – like I’m watching a movie and the protagonist is fucked. I think I’m going to have to catch a bus to La Paz as quickly as possible in order to find anything useable but finally the pharmacist pulls out some vials that look remarkably like what I took from the hospital when I was first diagnosed. I have to buy syringes 3 times the normal size to use with the vials. It all costs about $600 but at least I don’t have to have a prescription. I spend the rest of the day researching what my new dosing should be, and buying a bus ticket to get me the hell out of Bolivia.
20. Back in Argentina I stay at an Eco Yoga Lodge (run by practitioners of Bhakti-Yoga, also known as Hare-Krishnas) for a week and a half. I get into a conversation with a kid who lives there about diabetes. He asks if I’ve tried alternative therapies and I say no, that it’s hard to do so because if I stop taking my insulin I get very sick. He smiles at me knowingly and says “ah, like a drug addiction.” I take a deep breath and explain to him, in Spanish, that insulin is not a drug, that its a protein that most people already have in their body, produced by the pancreas. That my pancreas is broken and no longer produces it so I have to inject myself with it. He suggests that maybe alternative therapies could fix my pancreas and I acknowledge that it could be possible, but I (nor anyone else) wouldn’t know where to start. Afterwards my roommates say I was patient with him and they wouldn’t have been able to keep their cool. I say that after…12 years I was used to it. I realize how long I’ve been diabetic and wonder if it will really be the rest of my life. When we meditate that week I desperately try to find god for the first time in my life. I ask and beg for him to show himself and give me some direction. I find nothing.
21. When I get home from Argentina I see my endocrinologist. My A1C (the blood test that averages how well I’ve been controlling my diabetes for the past 3 months or so) comes back very bad. It’s ok, says my doctor (the best I’ve ever had) as long as my trip was worth it. It was.
22. I’m about to turn 22. My diabetes turned 13 on Christmas Day, 2012. It’s a teenager now. I hope it won’t act like I did as a teenager, although I’m not the biggest fan of how it’s acted this far in its life. It stole my childhood. Took over my college degree. Gave me a sensitivity to injustice no one should have to deal with. In its teenage years it will influence my relationships, my decision to raise children or not, and my career choices. I look back on the time I’ve spent with it and feel…well, not a whole lot of anything really.
Four months after writing, I re-read this essay. I’ve joined online communities, improved my A1C, and gone to local happy hours and talks for diabetics.
I’m seeing someone, and he doesn’t seem to care that I’m diabetic. I’ve talked to people who have a much better outlook, who’ve told me that someday I’ll appreciate my diabetes, realize how much its given me and I’ll stop being so angry. I read a book of poetry by diabetics about diabetes. I’ve met women and men who’ve been diabetic for 50+ years, who’ve summited huge peaks and had kids and competitively swum with diabetes, and I feel like I can do more than I used to think I could. But I’m not ok with it yet. I feel like all I want is a sense of closure. I want to come to a point where the way I feel now goes away, I feel acceptance and don’t cry when I think of how my life could be; if I didn’t have to constantly worry about my A1C, count carbohydrates, and could consider having children without worrying about passing it on or causing a birth defect because of a high blood sugar.
If I didn’t have to make sure I always have a steady career so I can afford all my medications, doctor’s visits and tests. If I didn’t have scars all over my arms, stomach and hips from injections. If I didn’t constantly receive comments and advice from random strangers about my health, from “you should try apple cider vinegar” to “I have a friend whose diabetes was cured by yoga” to “type I, that’s the bad kind, right?” If I could go for a run without a water bottle full of juice or pockets full of gummy bears, and some cash and a credit card just in case, and a strong awareness of places to buy food in the general area. If I didn’t have to explain to my boss that telling me I can’t have juice with me while I work is illegal discrimination. If I could truly let go and have a night of indulgence, because now, even if I drink all the beer and eat all the cupcakes, I still check my sugar and take my insulin, because the consequence isn’t just a hangover or bigger hips, it’s death. I don’t know how to forget all that.
I’ve learned independence, responsibility, maturity, strength, determination, patience, sensitivity, compassion, and self-awareness because of my diabetes, and I feel like that should count for something. But if I write that down on the “pros” side of the sheet it looks like a smudge of ink next to the list of cons.
Unless there’s a cure found in my lifetime, I don’t know if I’ll ever be able to find closure; how am I supposed to accept and move on from something that never goes away?
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image – Jill A. Brown