I came home tonight, did 20 minutes of pilates, cooked green beans and salmon for dinner, got a 93% on my econ test (holy crap!), and am just sitting down to finish reading a book of David’s that I need to return to him at Wiscon.
What else did I do?
I did things I don’t even think much about anymore. Calculated about how much the pilates would affect my sugar levels. Checked the insulin supply in the fridge to see when I’d have to make my next run. Thought about what ordering out for pizza would do to me at about 3am (groggy, pissing tired, muzzy head, incredible thirst). Decided I’d rather feel great tomorrow instead of crappy, and made a food decision based on that.
Bled onto a piece of plastic, compared that number to the number of carbs I wanted to eat and dialed out the appropriate number of insulin units. Took the hit. Ate some dinner, thought about how many units I would take if I decided to eat some dark chocolate afterwards. Decided to wait until *after* dinner instead of *before* to take that shot, in case I got full before I wanted the chocolate.
Two years ago, on May 15th, Jenn found me standing stock still in the middle of the bathroom in my Chicago apartment at about 11 at night, breathing heavily. I remember that part. I remember her looking at me with these big eyes and holding out her little hands and asking about me. If I was all right? Telling me to come with her? I remember, vaguely, trying to move toward her on heavy feet. Everything was hazy. Like looking through a gray gauze.
That’s the last thing I remember.
I’d been very sick since Friday. Now it was Sunday. And things weren’t getting better. It felt like I had the flu. Incredibly tired and achy. Incredible thirst, but then, the thirst had become a mainstay of my life. I’d been dealing with that for months. No, this was something different, different than the steady but inexplicable weight loss despite incredible hunger and thirst, the weird and frequent infections, the extreme tiredness and irritability and depression, the constant reporting mistakes I was making at work. All that had been going on for nearly a year. No doctor could tell me what was wrong with me. But this was reaching total-body shutdown levels.
I just wanted to sleep. If I could just sleep, I’d be fine.
I woke up looking into a bright light, lying on my back. It was an office type room. Some guy leaning over me, but I knew that everything was OK, because Jenn was there, and she looked stressed but relieved, and I knew I was safe because she was there. I knew Jenn had had a good reason for calling an ambulance.
I remember that I really had to pee, and tried to get up. They all forced me back down. Not that that was hard. I had no strength. No energy. Nothing. My wrists were so small. Everything about me had gotten so much smaller, less substantial. Weak. Why hadn’t I noticed something was wrong when I lost all that weight? I’m not supposed to be a small person.
I was assured I had a catheter in, which I found funny because, you know, I figured I would have *noticed* that when they put it in, but this whole place was totally foreign. The world was still foggy, that gray gauze, and I was content to just let things happen to me. So I peed right there in the bed, and boy, that was great.
I don’t remember anybody saying what was wrong with me. Maybe they said something about blood sugar then. I don’t know. I know Jenn said she’d called work and let them know I wasn’t coming in, and I was relieved. I know she then asked if she should call my parents and I said, “No, don’t call my PARENTS!” In my hazy dream state, the worst thing in the world would be to bug my parents with something like this, something like… what? The flu?
But I didn’t have to think much longer, because they were moving me off the bed and bringing me somewhere, into an elevator, somewhere, and that was it, the world was gone again. I was gone, and it was really quiet there.
I wasn’t lucid again until late Monday? I don’t remember. I know my mom told me afterward that Jenn had called late Sunday, the 14th, and my mom had seen that someone called, but didn’t call back because she figured it was me calling late because I’d forgotten it was Mother’s Day. She figured she’d guilt trip me a little.
She felt so terrible about that afterward that she remembers the anniversary of my diagnosis before I do…. it’s Mother’s Day.
You don’t really think about much of anything when someone tells you you have a chronic illness. Or, really, what you’re thinking about is 1) what do I need to do in order to live? 2) what can I still do, what kind of life can I have, with this illness?
The rest of the ramifications – what it will do to you, your self esteem, your work life, your personal life, your relationships, your friendships, your family, all of that…. that all comes later, after you figure out if it’s possible to live any kind of normal life. Any kind of life resembling the one you used to have.
I used to be a different person. I was young and invincible and infallible. I was always right. I was always strong. In fact, those were all fronts. I was not strong or infallible, and I certainly was not always right. Most people aren’t, but not all of us really think we are. Those things got me through tough times. I clung to them. When your hole world, your whole perception of self, is shattered, though, it’s hard to cling to those things anymore.
In fact, I was a weak, selfish person, which was why when Jenn accused me of it later on it hit me so hard. I ran around in life with no responsibilities, not a care in the world, racking up credit card debt and blowing through relationships and blowing off friendships. When things got too crazy I just ran away. I’d run around the world trying to escape myself, but there it was, the whole time, just me. Me with all these things to fix, and no fucking clue about how to fix them.
The Old Man once said that chronic illness was the best thing that had ever happened to him, and to me. Being ill teaches you to grow the fuck up really fast or to just give the fuck up. You either figure out how to manage, figure out what’s important, or you pack it in and go back to that quiet, still place that tried to claim you.
But you know what? Dying? It’s pretty dull there. Everything just stops. Blackness. Nothingness. Endings.
I believe everything happens for a reason, even the shitty things. I believe lessons are repeated until they’re learned.
I needed to learn how to love people, but not just love. Let myself be loved (that’s still hard). I needed to have my heart broken (two or three times). I needed to know I could live afterward. I needed to pay grown up bills and figure out grown up finances. I needed a grown up job. More than that, I needed to stop being so goddamn selfish, to understand that it’s not all about me, to realize what’s really important in my life, to stop avoiding and then learn to get over severe emotional hurts.
Because at the end of the day it doesn’t matter if you’re weak. Everyone’s weak. It’s what you do with yourself, your life, how you relate to other people, once you know that.
It’s realizing that your time is limited, or, in my case, completely borrowed. Every moment I get is extra. I measure out my life one unit of insulin at a time. I know already that they’ll never be enough of it. I know I won’t make it through the zombie apocolypse, or the nuclear apocolypse, or being stranded for more than a month in the Alps.
At the same time, I know that I can kickbox, I can run, I can have a successful job, I can take care of myself, I can live alone, I can (sometimes) be a good friend, I can date, I can laugh, I can be physically strong, I can learn French, I can go back to school, I can travel, I can have a house and a dog. I can write books. People may even read them!
I can do all of these things. I’ve just learned, over the last two years, to measure them differently. To not take them for granted.
None of us can live without other people. We’re social creatures. It’s just that I know that more intimately than most.
It was a hard lesson.
But it was the only way I was going to learn it.
So here’s to two extra years (brutal as they were), and many more (less brutal?) to come.
