I am an Island

I woke up today like any other day. Hair matted with a combination of sweat and drool. I sleep with my mouth open because of my cystic fibrosis. Mild cystic fibrosis. The doctor had called it mild anyway. That most people are diagnosed when they are just a baby, that I was lucky I was only 20 when it set in. It means I am constantly getting sick with the flu, and have attacks of shortness of breath. He said it wasn't life threatening, but I would be dealing with it for the rest of my life. That was five years ago.

I used to get scared about it. A lot. Thinking that one day I would get another attack, and that would be it. My lungs would just give up, and I'd choke on my own lungs. Its scary to think that at a moment's notice my body would decide to give up on me. That's what I think kicked me in my ass. That thought that not only would I die, but I'd die because I had weak lungs. I'd never thought about excercising my lungs before, but now it seemed pretty damn important to do it. So I started running. And playing soccer. It's not like I was completely out of shape or anything, but I started doing it like my life depended on it. Because I thought my life DID depend on it. I imagined my cystic fibrosis was a tall and skinny monster with compound bug eyes and pincers, and was chasing me when I ran anywhere. Just waiting to catch up to me and clamp down on my lungs.

After three months I started to feel better. I had fewer attacks and my breathing felt even more normal. It still struck when I slept, but I started sleeping with a few pillows under my head, and with my mouth open. It all seemed to help. But then, I had the mother of all attacks. I was running on a fall afternoon, just around sunset, when my lungs stopped. Not slowed down, so it was hard to breath, but stopped altogether. I banged my chest, grabbed my throat, but nothing. They had given up. I thought that was the end for me.

I passed out.

I remember waking up in the hospital. My doctor was there with the other hospital doctors, and my mom and sisters. She was yelling at him, but in Chinese and of course he didn't understand. My sisters were trying to calm her down. I couldn't make out what they were saying. But one of the nurses noticed me waking up, and ushered them all out of the room, all except for my doctor. He told me I was lucky that someone had noticed me falling down on the sidewalk. They were able to resuscitate me, just barely. He said it was a very bad idea to have been excercising that hard. That my cystic fibrosis made my lungs weak, that I had to go easy on them. I couldn't go full out like I had been doing and expect it to be okay. Of course that scared the crap out of me. The doctor later told me that my recovery should have been in a day or two, but I ended up taking almost two weeks.

I was hooked up to something called a CPAP. It was like a breathing mask, but just for my nose. It also kind of scared me, but only at first. It always felt like someone was holding the end of it closed for a split second every time i breathed in or out, but would also blow a bunch of extra air into my lungs. Once I got over the fear of each breath being held for half a second, I started to really appreciate it. My lungs felt like they did when I was running. Completely full and puffed up. I would watch the clear tube snake down between by breasts, and I would try to breath in as much as I could, and push the tube out as far as I could. I imagined my lungs getting so full that the space between my breasts would fill up, until I just had one big boob, filled with air. I think the medication they had me on kept me a little crazy like that. A few hours after I woke up they tried to take the CPAP away from me, but I felt like I was going to have another attack again. I could feel my lungs grow weak with each breath not on the machine. Like my lungs were slowing down to a stop. I had to use all of my concentration to keep my lungs opening and closing.

I cried, scared that the next breath was going to be the one last one. I cried that these damn doctors didn't care if I couldn't breath, they just wanted me out of their hair. I cried because my mom was still screaming outside the room, and it was taking all of my family to keep her calm. I cried because nobody was there with me.

But after two weeks of sitting in that bed, breathing luxurious air, I started to remember running. I started to remember the feeling of the cold autumn air rushing into and out of my lungs. The feeling of fullness was the same as the machine, but somehow better. Maybe because that feeling was deserved. Because I had earned each lungful of air when I ran.

I looked at my legs and noticed how flaccid they looked. I hadn't walked on them at all for the past two weeks, except for trips to the bathroom, CPAP held in hand. They looked lumpy. Like the muscles underneath had turned to mush.

I took off the CPAP, and focused on my breathing. I didn't let the fear take over. In my mind, I shrieked my mantra "IN TWO THREE FOUR, OUT TWO THREE FOUR". Long, deep breaths. They didn't feel as full as on the machine, but still I didn't feel like I was about to die. I kept this up for god knows how long. Long enough that I felt like I could breath on my own again. Long enough to check myself out of the hospital.

I remember leaving the hospital. I remember climbing out of the wheelchair and walking out into the cool air. I felt my lungs fill with real air. I imagined little trees on the inside of my lungs, brown like the leaves on the street, puffing up as the cool air blew past them. Puffing up and sucking in as much as they could. Turning more and more pink with each breath.

I couldn't believe the exhilarating feeling I was getting from this. I started to walk. My breathing getting a little harder, after not exerting myself for the past while. But my lungs were getting stretched out. I couldn't stop the feeling at all. The need. I picked up my pace a little, jogging to the end of the driveway of the hospital, and around the corner onto the country road. I could feel that feeling again. The feeling of fullness, but this time so much more gratifying.

It was then I decided, that there was absolutely no way my doctor could be right about this. Something that felt this good, this healthy, couldn't possibly be that bad for my lungs or for me. I ran as fast as I could, for as long as I could, stopping every once in awhile to relish the deep heaving breaths I needed before taking off again. I don't know how long it took, but I ran the whole 15 kilometers to my apartment. I collapsed on my bed.

A few weeks later I went to a new doctor. This one was younger than my usual one, and seemed more enthusiastic. The first thing he told me was that my last doctor was an idiot. Not just an idiot, but was probably completely outdated. It had been proved over a decade earlier that exercise was not only not harmful to my condition, but probably helped with the symptoms of cystic fibrosis, specifically because it excercised the lungs. I never went back to my old doctor. It was probably for the best, a year later he lost his license in a malpractice suit.

I am still here, lying on my bed, staring at the ceiling. I can still hear him snoring softly beside me. I always felt conflicted about his snoring. As much as it kept me up sometimes, he also put up with my drooling. It got pretty disgusting, sometimes the entire pillow I was using would be drenched. But he never seemed to mind, or at least never let on that he did. I watched the sheets draped over him, rising and falling with his every breath.

I wonder if he really appreciates every breath for all it's worth. Probably not. I never told him about my condition. The most I've ever mentioned was that I have to sleep with my mouth open, just because.

I don't know how he can sleep. This is the first time he has slept fully clothed in months. He almost looks more peaceful than he normally does while sleeping.

For every night, for the past year, nearly, we had been making love, hoping for a child. We had been together for nearly three years now. We had decided we didn't really care if we ever got married or not, but we did love each other very much, and wanted to have a child together too. But after months of trying with no results, we both got worried. But we were also scared of what the doctors might have to say about it, so we put it off for a long time. But last week, he came home late at night, and told me he had seen a doctor about infertility. He had gotten tested, and everything had checked out for him.

I saw my doctor last night. That's when he had broken the news to me. That in normal cases of cystic fibrosis, infertility is a possibility for women, but because mine was so mild he had been hoping it wouldn't be an issue for me, and since I had never brought up having a child to him, he had never mentioned it. He then confirmed that although I wasn't actually sterile or anything, that it would be exceedingly difficult to have a child. Not only that, but since I already suffered from cystic fibrosis, that there was a very good chance that our child would have it too. In fact it could have it worse than me. He said my boyfriend would have to get tested for carrying the recessive gene for cystic fibrosis. If he did, it'd be a one in two chance that our child would also have cystic fibrosis.

The walk home from the bus stop to our apartment was long. Long enough that I thought of how I would break the news to him.

"I went to the doctor today"
"Hmm?" He looked away from the TV to me.
"Turn that off for a second, we need to talk"
"What's the matter?"

I looked into his eyes. So much concern. I felt myself begin to cry, but I stopped myself.

"I went to the doctor today. He said.... he said I was sterile. That I can't have kids, that I'll never have..."
It was the farthest I could go without crying. But just after the first sob, I felt it. The shortness of breath. I hadn't gotten an attack in over a year, but it was back. Kicking me when I was already down. I fell from the couch onto the floor, holding my neck. I think he shouted, and grabbed me, cradled my head. I don't remember. I just remember slipping back into my old mantra, trying to instill calm to my body again.

In, two, three, four, out, two, three, four. 


After a few panicked breaths, I started to regulate them again. Slowly I came to. My head was in his lap, and he looked down into my own eyes, frightened, phone in hand, about to call the ambulance. I reassured him I was okay, that I must have just fainted. I had never been around a person who had fainted before, neither had he, so he bought it.

We talked for hours after that. About children. About alternative options, like adoption, or in vitro fertilization. We talked about what we wanted out of life, what we wanted for each other and ourselves. We didn't come to many conclusions. Neither of us had thought very hard about the future, all we had known was that we had wanted kids.

We didn't make love that night. We both went to bed without much talking. He didn't kiss me good night. Not that I really noticed either.

And now he's sleeping, without any other cares in the world. Without fear that his next breath might be his last.

Standards

We shoot for the stars in what we want.
Unwilling to settle.
Wanting that which we clearly do not deserve.
We can't even be happy with what we deserve.

And we feel bad.

Sometimes you need to break down your insecurities
Sometimes you need to let yourself live with abandon and verve

You need to not worry about tomorrow

About who might be hurt by the mistakes you know you're making

I scurry about quietly
Hoping your gaze doesn't graze my coat
That I don't become transfixed in the spotlight