Alive

Very much alive in fact. More than 4 months since my last post and what seems like a lifetime ago at this point. I was released from the hospital on April 26th 2010, as an outpatient I came back to the hospital every single morning to get checked out. My mother moved into my apartment and took care of me, as I wasn’t allowed to cook, clean, shop, leave my apartment, etc… I was a frail shell of a human being anyway – eating so many pills every few hours it would scare a junkie.

As the weeks went on I got my strength back, Dylan’s graft took hold all up inside my bones, my numbers slowly rose and I started breaking restrictions my doctors had given as I wanted. As always there were problems, some pneumonia, GVH, fungal infections, blah, blah, blah. In the end I was only re-admitted two separate times (I think?) and once was because I made a scene and my doctors were convinced I was having some sort of a psychotic break and I needed to be supervised. Who knows where they got that.

It’s been months and every day I still wake up in pain. My feet, head, gut, joints, bones. At some point you just get used to your body fighting you, like some sort of sick endurance test no one asked you about. Getting through each day is like swimming out to sea with the tide – how far can you push it and still get back to shore? Thanks to some of the drugs i’m still taking my muscles have a terrible time maintaining muscle mass so I can only get so strong.

Side Note: Someone threatened to “put me back in the hospital” yesterday. what kind of hateful shit is that? People are awful. Anyone who knows me knows I’m not the kind of person to fight you. I hope you’re not someone who threatens recovering cancer patients.

Somewhere around the beginning of July my mother moved out of my apartment and I was downgraded to appointments at the hospital once or twice a week. I still had many if not all the same restrictions but I was not paying attention to any but to the most obviously hygienic ones at this point. I embodied what my doctor called a non-compliant outpatient – though I’d gotten very talented at manipulating the system to keep everyone “off my back” as I saw it. Not the right way to approach a team of doctors trying to save your life, but hey, not dead, right?

One of the transplant coordinators made a comment to me before I ever had the transplant when we were going over restrictions and the associated dangers of not having an immune system – paraphrased: ‘This entire operation is to provide you with the chance to live your life, you’re going to need to decide at some point what that means. You need to make safe choices but it’s all a quality of life decision for you at this point as well.’

Quality

I’m Bipolar. When I was diagnosed in December my medication was one of the things that went right out the window. It took me two years after finally accepting medication to get my shit together and apparently it was the single worst thing in the world for someone with blood cancer to be taking. After a lifetime of trying to live inside my own head, I’d accepted the crutch of medication – only to have it kicked out from under me.

The steroids I’ve been on since my diagnosis could send a balanced person into a mood disorder, for someone in my condition it simply brings it to a whole new level. I know it’s not anyone’s fault I’m sick and I can’t blame them for putting me on medication I’ll never be able to take, but how can they expect me to embrace their suggestions and treatment again? I’ve experienced holes so deep and dark I understand for the first time what it feels like to truly want to die. On the up swings I’ve had to stop myself on occasion from flying across the country or moving to a different state on a whim.

After having what I’ll call a ‘less than satisfactory’ interaction with a doctor who was apparently the most qualified and talented psychologist on staff at the hospital – two other doctors summarily refused to treat me because – get this – I had cancer.

Yeah. God knows why that would make someone feel like an outsider. Oh, no thanks, I don’t want to explain to you that after I spent all that time and energy trying not to die, sometimes all I can think about is why in the world didn’t I just let the cancer swallow me alive? You’re scared of my disease, how can you possibly understand the anger and hate I feel? I can’t even figure out where it comes from. It’s not that i’m not grateful to be alive, I am. Ever feel like you don’t deserve it though? Your own life? It’s an empty that doesn’t go away.

There’s so much guilt – why aren’t you more grateful? Why aren’t you happier to be alive?

I don’t know.

In the end I have to learn to live in my head, same as everyone else.

Life

People want to know what changes about a person, coming out of an experience like I had in the hospital. The only tangible regret I can remember is that I spent so much time in my life looking for reasons not to do things. I don’t need to do anything and everything but I wanted to make different decisions – for different reasons. If my doctors had even an inkling of what I’ve been doing I’d never be allowed back in the hospital again. Cross country road trips, three day music festivals in the woods, clubs, bars, Sox games, etc …

They locked a 23-year-old in a cage and told him he might die and never get out ever again. Again, anyone who knew me when I was younger… I’m free and as far as I’m concerned I’ve got a license to die. Not that I’m going to, I worked damn hard not to – but goddamn if that isn’t my prerogative now.

I have these moments every once-in-a-while when I see a couple kissing or beautiful clouds over some scenery and all I can think is “still not dead” – nice try and all but I’ll die when I please.

– Austin