On body

From the very first moment when I was diagnosed with diabetes type 1 I knew that there is no other such a psychedelic illness in the world.

I don’t mean there is no worse, no more painful or no more disturbing illness. But
I bet you have never met such a two-faced, cunning and tricky liar as diabetes is.

I got it as my 20th birthday present, 6 years ago. If you’d ask me wether it had affected me or not I would say it did turn my life upside down and it did not change anything at all at the same time. The second part would be a lie. But then I’d bite my tongue. It did not only change everything. It shaped my early adulthood.

Anyways, from the very first day, I tried to take the most of it and make this tiny drama as funny as possible for me. The day they diagnosed me I played a trick on my then-boyfriend, who came to visit me in the hospital. Poker-faced I told him that from now on sex is forbidden (we were just 20 and, apparently, stupid enough so that I could get away with such an absurd lie). He believed and I will never forget the view of his shocked face.

The very same day my grandma visited me and gave me the most beautiful ring which, since then, I never took off. I like to think of that day as of the day I got the ring, not of my diabetes’ anniversary. I actually remember very well the moment she gave it to me and I remember the hospital room smelling of my birthday flowers. Maybe, if it hadn’t been for diabetes, I would have immediately forgotten it.

After the hospital treatment I tried very hard not to stop being a party girl. I liked shocking people when I was doing injections on my waist in the clubs. I made stories, which often enabled me to distinguish idiots right away. It doesn’t take
a doctor to tell that insulin pen is no new-generation-easily-applicable drug. Yet many men got trapped and I didn’t have to make an effort figuring out whether his brain was worth a minute of attention.

To demonstrate how little I cared, I kept joking that my diabetes made me so cool as Red Hot Chili Pepper’s ‘Blood Sugar Sex Magik’ is. Just with more sex, I added sometimes, trying to be funny. A perfect pretext to start discussion on Frusciante, or at music at least. On anything safer than the intricacies of glucose’s fluctuations which might have been my concern at that moment.

When I had to make decision whether I wanted my first insulin pump I couldn’t stop crying. I wasn’t happy, I was terrified that this little machine would have to always be there. Injection pen can be always put in the bag and nobody will notice. With pump, no matter how small and comfortable it is, people start asking you.
I cannot wear some of my tight dresses anymore, simply because they look ridiculous with the little quadrangular thing around your waist. Now it makes me laugh but 3 years ago it was a real drama.

You can actually tell a lot about a man’s personality only observing his relationship with your insulin pump. It’s a bit like seeing someone meeting your pet. I hate to say it but, yes, it is a kind of a test. In the end this is my little electronic pancreas, my organ, integral part of my body.

With a little electronic device at my waist I kept on trying. And I’ve became
a curious case during many airport check-ins. Sometimes I explained that this is
a device designed just for me so I could play Snake or feed my Tamagochi whenever
I want. Or I tried to convince some friends I can surf the internet right from it. Soon
I stopped feeling sad when somebody asked me ‘But do you REALLY have to wear it ALL THE TIME? The answer I give is half-true or true, depending on who asks and on my mood.

The first is ‘yes, I take it off only when I take a shower’.

The second is ‘yes, I take it off only when I take a shower. Or when I have sex’.
Because I know that this is what the question is about.

These are the cool parts. The exposed parts. The parts I’ve been exercising through years. Why then is diabetes such a psychedelic cheater?

I hate boredom. And diabetes is extremely boring. There is a lot of counting, lot of self-control and almost invisible and not really rewarding results. This is the psychedelic part. The part I’ve never expected even my closest friends to understand, although some of them wanted to.

Because you don’t want to bore anobody with your stories. With how terribly sleepy you feel today because your glycaemia is too high this time and you can’t help it. How you cannot concentrate on your work. How you urgently have to measure your sugar level. Yes, this is a glucometer. Your grandma uses the same? Wow, how great is that!

There is nothing cool about being ill, right? You don’t want to annoy anyone or spoil a party refusing drinking. I was always paranoid about questions. Because people often don’t know how to react and they fall into disturbing silence as if diabetes was a death sentence. Or they immediately become overprotective. Like it happens with every existing stereotype, it’s a result of lack of information and I don’t blame anyone for that. Yet, many times instead of being calm and simply explain what diabetes T1 actually is, I childishly and aggressively did my leave-me-alone-who-do-you-think-you-are part.

But mostly you don’t want people to see you weak. Nobody is concerned about providing you coca cola at 3 a.m. in the middle of the club because you’ve just got your hypoglycaemia. You don’t want to be seen devouring snickers in the dirty toilet, all trembling and sweating like an animal, praying that the sugar level will rise and you can go back to your date.

There is nothing cool about all this and I am the person who, as far as I remember, was always trying very hard to be cool.

So I found my solution, the stupidest one. I denied it. I decided that one day I will die anyway but I want to try it all, being diabetic or not. I was never very careful person but I became really reckless one. As if there were a choice to make: diabetes with all its boredom and unattractiveness versus me. It was a 100% imaginary choice, yet I made it. I chose myself.

And then we have the whole list of possible complications which I didn’t even dare to think about, not to say to listen about. I became deaf to all the warnings. I got disconnected when somebody, including my doctor, opened one’s mouth to talk about it (I’ve arrived to the point she didn’t want to talk with me anymore at all).
I am young, attractive, strong and I can have anything or anyone I want, I thought. My body is supposed to reflect it and until it did, I kept on repeating to myself that there was nothing to worry about.

But finally also my own body told me to stop. I ended up in a hospital, partly because of my own foolishness. My foolishness to treat it like a trophy, an object of desire, a decoration. Which it isn’t. It is mine, first of all, and only I can judge it. Period. Secondly, it has to be able to give me what I need. Like enabling me to travel. To have an energy to love my job. To be able to concentrate on studying, to grow up, to discover. Whatever it is, sex is just one of its functions. Not the primal one.

We live in a distorted reality where the division into healthy and beautiful vs. unhealthy and ugly is overwhelmingly omnipresent. I became a victim of that division and I hope I will never fall into that trap again.

I could not understand that also a person with an unhealthy or not totally healthy body has a right to feel beautiful. Me included. But I want to believe it so that
I won’t have to make a choice between me and my diabetes again. I want to feel interesting and beautiful with my little insulin pump and my glucometer. With my little daily boring routines. With the moments of physical weakness.

I want to feel that there is no contradiction. I want to blur the lines that exist inside of my head. I’ve created the limits myself by believing that imperfection equals weakness. But it is a lie. If there is anything that can make our existence more authentic, it is our vulnerability. And it takes guts to admit it.

Plus, being perfect is terribly boring.

You are a hypocritical liar, but I have no choice but to see through you. Sit down, let’s talk. Want some coffee?