20 years ago today, I was diagnosed with Type 1 Diabetes. 20 years. 20 birthdays. 20 halloweens. 20 years. This is the big one-the one I’ve thought about for a decade, the one I thought about sporadically throughout the past few days. So what do I feel inside as I sit here and I type out “20 years”? 20 years is a lifetime. It’s a full grown adult in college. It’s an almost legal drinker. How can it have been this long? People say this about major events in their lives, but the truth is, I can honestly remember it like it was yesterday.

It all happened in a matter of weeks. I dropped weight quickly; I complained of constant thirst and hunger and fatigue; I was literally wasting away. My mother watched me carefully the way I now watch my children and she knew (as she would tell me later in life) what was coming. We made an appointment with my pediatrician-an incredible man with humor and kindness and actual respect for children-and the night before, my mom crawled into my bed. I was 11 years old and a young 11 at that. I played dolls incessantly. I loved dressing up and playing stories and reading books and drawing. I thought boys were disgusting and that my sister was perfect. I was in all matters of things, a child. My mom crawled into my small twin bed and together we looked up at my ceiling of stick-on stars and posters of Mia Hamm and Sheryl Swoops and she said “Anna, everyone has a dark cloud in their lives. Those that seem to have it perfect, never do. Tomorrow is going to change everything but you are going to be ok.”  I of course had no idea what she meant, but even now, I can remember that I was scared.

The next morning we went to McDonalds (which I’m sure my mom purchased thinking it would be my last for a very long time) and I drank four cokes in half an hour. I say that because diabetes is a terrible, sickening disease. It eats away at your body and kills you slowly but with fervor. For those who don’t know, type 1 diabetes is an auto-immune disease. No one knows where it comes from. No one knows how you get it. Your body inexplicably begins attacking itself and killing off the cells that produce insulin in your pancreas. Insulin is the hormone that breaks down food and separates it into material your body needs to grow big and strong, and material that goes out as waste. The pancreas is a part of the endocrine system and in many ways, it is one of the most important functions in your body. My body had stopped making insulin and glucose was flooding my bloodstream. This causes the body to turn on itself and begin eating at your stored fat (hence the massive weight loss). The sugar in the blood causes extreme thirst, frequent urination and crippling fatigue. Without any insulin, a diabetic would die in a matter of weeks.

We got to the Doctor and he looked me over and then he sent me out of the room. I remember sitting in the waiting room reading an old Highlights magazine about that one kid who did everything right and his brother who constantly messed up (what a terrible parenting message btw). After awhile my mom came out and told me to come back in the Doctor’s private room. I’d never been there before and I can remember that I felt nervous. I knew somehow that you didn’t go in a Doctor’s private office unless something was really wrong. My mom looked at me and very practically said “Anna, you have type 1 diabetes. We are going to the hospital now and Theo and Joe will meet us there. You will stay there several days while they explain everything to us. You’re going to be ok and I love you.” The Doctor watched me. My mom watched me. I didn’t cry until we got to the parking deck.

I spent three days in the hospital and my mother slept there with me the whole time. We watched “Beauty and the Beast” on VHS and ate sugar free pudding and jell-o. My dad made funny faces and pretended to inject his ears and fingers with my new set of syringes. Each family member had to practice giving injections of water into each other so that they could help me with my new life. Doctors talked endlessly about carbohydrate counting, insulin injections and calculations, hypo and hyperglycemia and the potential life threatening dangers of not managing my sugars. I listened to my walkman and read R.L. Stine’s Goosbumps while they lectured. Frankly, I didn’t care. This wasn’t my problem.

My two best friends, Lindsay and Caroline, came to visit and they stopped in the gift shop and bought me sugar free gum and tiny dog figurines for my home collection. They seemed uncomfortable in the hospital room but also sweet and silly and I remember feeling almost normal again. After three days, it was time to go home and as we walked out, the Doctor warned us that “this was when things got real”. And it did. I got home-I walked through the front door-and I began my new life. One that was completely and utterly changed forever. Everyday, I prick my finger between 8-10 times and test my blood sugar to make sure it’s in range. I wear an insulin pump at all times that is attached to my body through a tiny needle. I change it every three days and inject myself with the needle that will then stay in. I mathematically calculate the carbohydrates in every single piece of food that goes into my mouth and then enter it into the pump which, in turn, distributes the insulin. Somedays life gets in the way and I calculate incorrectly. In these instances, I either begin sweating and shaking with hypoglycemia or I can’t get out of bed, my eyes are glossy and painful and my legs ache from the nerves being affected by high sugars. Some days, I inject myself in a bad place and develop a hard growth in its place. And everyday, every single day, I worry that I will lose my feet or my fingers or my eyes. I worry that I haven’t done enough; that there will never be a cure for this goddamn disease and that this is my life. Forever.

Several weeks ago, I began to get depressed (a super fun side effect of having diabetes). I searched my mind for the cause. I’m stressed about school-sure. I don’t spend enough time with the babies-never. I want to be more sensible about spending money-always. But it was something more- I figured it out about a week ago while lying in bed feeling sorry for myself. I’m sad that I have had this disease for 20 years.  I’m sad that I’ve had it longer than I haven’t; I’m sad that I can no longer remember a time when I didn’t have it; I’m sad that my body-the thing I walk around in every single day-is broken…is irreparable…is defective. Mostly, I’m sad that there’s no end in sight. 20 years is an inconsequential landmark because in the grand scheme of this disease, it’s a blip. Diabetes is forever. It doesn’t rest, it doesn’t break, it doesn’t leave.

I want to write something happier. I want to comment on how proud I am to have lasted this long with minimal complications-I want to “celebrate” the fact that this defective body created and carried two perfectly beautiful lives. And sometimes I look over at them and I feel this enormous sense of pride in myself for doing what I was told was impossible for the first 15 years of my disease. I got pregnant and I delivered two healthy babies. And for several days, I do feel better or ok somehow about this journey-about having this disease. Maybe I am tougher than I think I am. No scratch that. I am tough. I can promise you that. I can thank this disease of mine for that at least. I am tough and there is nothing I can’t handle. At least today there isn’t.

I’m one of those people who always watches “Shawshank Redemption” when it comes on TNT. There’s this part in the movie where that old guy finally gets out of prison and he ends up hanging himself because he is scared of the outside world. He is so acclimated to prison life that the real world has become what breaks him. I always think about that scene when I read articles about Type 1 diabetes cures. Don’t get me wrong, I want one. Desperately. But I also am distinctly aware of how close my disease and I have become.

You see, my disease and I have a real love/hate relationship. There are times when it grants me perspective and empathy and an ability to laugh loudly and to celebrate life. And other times, it breaks me down and leaves me weeping on the bathroom floor after a particularly painful injection. It hovers over my shoulder when I pour a second (or fourth) glass of wine and it pesters me when I reach for another piece of bread at a restaurant. I have tried for years to shoo it away-to ignore it and pretend it isn’t mine, and every time, it fades away for a second and then reappears. Like an overly clingy boyfriend, it waits for me when I get home from a night out drinking and eating with friends. It stands there and watches me and I look back at it with hatred and resentment. Leave me the fuck alone. I don’t want you. I didn’t ask for you. Please, I plead to an empty room, please leave me forever.

This disease is what has made me different for so many years. It is what makes me google foot amputation and vision loss when I’m especially low. It is what rips me apart when I think of not seeing my children grow up or get married. And yet I know, and in some ways have accepted, that it is part of me. Totally and completely. Even though I can still separate from it for the briefest of moments,  it’s just a second before it climbs back in, is reabsorbed into everything that makes Anna, Anna and just like that, we are one again.