World Diabetes Day: A Letter to My Younger Self

Today is World Diabetes Day. As a Type 1 diabetic, I always take a time out from the usual content to do – what else? – write about diabetes. I decided to write a letter to my younger, pre-diabetes self after reading Christel Marchand Aprigliano’s letter.

Dear Erin,

You won’t know a life free from diabetes; at least, you won’t remember one. You have to rely on your mom’s memories of those months when you deteriorated from a healthy two-year-old who was hitting milestones into a two-year-old who didn’t have the energy to get out of bed. Your mom will also tell you how she learned to give insulin injections by practicing with oranges during diabetes education classes. She’ll tell you how your dad had to pin your arms and legs so that she could poke your little fingers and give you your injections. She’ll recall the terribly low blood sugars, sometimes accompanied by small seizures or unconsciousness, and how you could become increasingly stubborn during those episodes – you sometimes had to be almost forced to drink the much needed glass of orange juice spiked with sugar.

This is your life although you won’t have experienced a severe low in several years. You will hope you won’t have another one even though you know it’s only a matter of time. Even when you have things under the best of control, your diabetes can betray you. Your life will become a rhythm of poking fingers, taking insulin, getting lab work done, and visiting with the endocrinologist.

You’ll learn a lot, too, and some of those lessons will be hard ones and some of them will be good:

• You’ll be as normal as any writer/editor/poet/artist can be. You have your mom to thank for this. She never treated you any differently than your brothers even if you had to forego certain foods (Actually, you were a really picky eater when you were a kid, which sometimes made things easier or more difficult. You’ll change your eating habits but not until you’re much, much older.) or had to eat Teddy Grahams while the other preschoolers had cupcakes during someone’s birthday celebration. You have your preschool teacher to thank, too. You have no resentment about that time in your life and still sometimes have a craving for Teddy Grahams. Your mom, by the way, will find this fact hilarious and will ask if you remember your preschool years.
• You’ll learn to respond tactfully when given the pitying look or the “I’m sorry.” You’ll even learn to maneuver the “You don’t look like a diabetic.” response even as everything within you wants to ask what a diabetic is supposed to look like. You wonder if you’re supposed to look like death warmed over. You don’t; at least, you don’t now. You owe a debt of gratitude to your favorite endocrinologist Dr. Assi for this.
• Speaking of your favorite endocrinologist, you also will have one who strikes fear into your very soul. You come to hate and are terrified of going to see him, but you’ll see him for a long time as he’s the only pediatric endocrinologist where you live. Dr. Assi, your big teddy bear of an endocrinologist, helps you overcome this fear, but this will be years later when you’re all grown up (kind of) and on your own. You will always remember waiting to meet him for the first time. He entered the room, took one look at you, and said, “I scare you, don’t I?” By the time you move away, he’s become not only your favorite endocrinologist but one of your favorite people. He’ll ask you how your work’s going, and he’ll have great fun asking you if there’s a special guy in your life yet. He’ll also tell you that you did look like death warmed over (Gee, thanks.) when you first came to see him but now don’t. You have color in your cheeks again.
• You will learn to evaluate doctors quickly during the interim of your childhood doctor and Dr. Assi. One you see once and only once; he tells you to eat whatever you want and to dose up on insulin. Another, only a general practitioner but knowledgeable about diabetes, will start you on a drug called Lisinopril for your kidneys. Your kidneys are fine, but you’ve been a diabetic for over twenty years at this point. Your doctor says it’s time to add some preventive medication to your care.
• You’ll graduate from syringes and vials to pen needles to, finally, an insulin pump. You’ll want a pump for several years before you can get one. Once you have it, you wonder if the thing is such a great idea. It’s not great fun to be a cyborg or to change out the infusion set every three days. You give the pump the two-week trial as your trainer recommends, and you don’t look back not even on days when your infusion set fails or when you absolutely despise having to find a convenient place to clip the thing that keeps you in working condition.
• You’ll start to carry a large purse, a fact that irritates you to no end for a while. You like your fun, small purses, but they just can’t contain everything you need when you’re a diabetic. You have to have at minimum your meter, glucagon tablets, and – before the days of your insulin pump – a case for your insulin that both protected it from breaking and kept it cool.
• You’ll struggle with anger for a time. You’ll hate being diabetic. You’ll yell at God and ask him why it had to be you. You’ll let go of this anger, and it will happen in an extraordinary way: you’re in the ICU (again) due to complications from the flu, and you share your room – partitioned with a piece of glass – with a newborn baby. You see the parents hovering over their child and eventually learn that the baby was born with diabetes. You understand that when the nurses come to check your blood sugar every hour on the hour that the same thing is happening with the baby. This makes you incredibly sad, but it frees you from your anger. You see and understand that other people suffer just as much if not more than you. You decide that your diabetes can become a tool. It can help you to have compassion and to be an encouragement to people who are suffering – not necessarily from diabetes but suffering nevertheless.
• You will become a fighter. Diabetes teaches you about falling and getting up and falling and getting up. Sometimes, you’ll get tired of fighting. You’ll wallow in the falling stage. You’ll struggle to your feet, though, and try again. You’ll take these lessons with you when you go to college and grad school and when you decide to start your own business.
• You’ll refuse to let your diabetes control your life. Part of this refusal is based on the “You don’t look like a diabetic!” response, but it’s largely based on a desire to challenge yourself and to prove that you can do things for which you aren’t really suited (I’m afraid you’ll never be a great athlete despite your best efforts.). You’ll train in Japanese jujitsu for almost two years and love it. You’ll take up running. You’ll complete a Tough Mudder. You’ll eventually take up CrossFit. You’ll take necessary precautions – you aren’t a loose cannon of a diabetic – but you won’t let your diabetes keep you from doing the things you want to do and achieve.
• You’ll learn to appreciate the little things. They often are what get you through the days, and they are what you remember when you come out of a really low blood sugar. You become grateful for weird things – the can of Sprite on the table, the melted Skittles in your hand, not going overboard with treating the low so that you rebound high – and for large things – the mom who puts up with how awful you become during and after a low, the fact that your vision remains steady for several years at a time, the basic fact that you’re still alive. Small triumphs become cause for great and excessive celebration. You’ll smile when your blood sugar stays in range for two days in a row. You’ll do your best to continue the trend the next day and the day after that.
• You’ll eventually work with a dietician and an insulin pump trainer. You’ll love them because they just get it. You can talk with them about anything – anything – and they sometimes answer questions you didn’t know you had or were unsure of how to ask. You’ll laugh with them about how insulin has a smell (It does even if non-diabetics think you’re a crazy person, which is okay. You will turn out to be kind of crazy but in a good way.).
• You will treasure the people in your life who treat your diabetes as no big deal. No matter how many times you say, “But what if…” or talk about some of the challenges, they will tell you it’s okay. The “what if” and the challenges don’t matter to them. You are more than your diabetes, and they don’t mind reminding you of that fact.

That’s all I have to tell you. Many more things – some good; some awful – will happen between the time you’re diagnosed and the time I write this letter, but you don’t need to know the future in its teensiest, tiniest detail. You just need to know that you’re going to make it.

Love,

Erin