aaand, we're live

Checked back into the Brig today. After enjoying my last cappuccino for a long while at Atomic, I packed up my two little bags and headed in. To pump up the drive (which was lacking pump, let me tell you. It was really hard to come back here.), we put in an ancient mix CD that I recently found, only to discover the joys of the boys of Backstreet and Nsync. The crooning/squealing chorale of gentlemen and their identical 90’s beats made so many of the fears go Baby Bye Bye Bye.

I got another Hickman line placed on the other side of my chest so I officially feel like a marionette, and I am now sitting in my new digs here on 7B. This is my favorite room so far I think: it’s pretty large, and though I haven’t experienced the morning sun yet, the afternoon rays and sunset were pretty lovely. I have a much better view of the smokestacks from my window this time. Also, there’s a bit of color on one wall in here, a sage-y green, which isn’t too bad. AND, the clincher: the toilet is magically lower, and I can semi-touch the ground when I pee.

I wasn’t able to bring as many things with me this time; especially by way of decoration; as the items allowed in the room are stricter this time around. Everything needs to be wiped down (made very clean), and fewer things are better. I’m still waiting to hear if I’ll even be able to make my own coffee, which is a real mental and physical ritual for me at this point… so I’m hoping for the best here. But it’s pretty strict. Example: I brought all my clothes freshly washed and in clean plastic bags, only to have them rejected because they need to be in ZIPLOCK bags. So I am relegated to this delightful excuse of a Johnny—which, by the way, WHO DESIGNED THESE?!? Your ass/back will WITHOUT FAIL be hanging out no matter what you do. Why isn’t it just a bathrobe? A ROBE with ties the match up? How can this be too much to ask?

But here we go, starting chemo tomorrow (and by tomorrow, we mean, 12am tomorrow, a few hours away tomorrow, no time like the present tomorrow.). I’ll be on a tight regiment, I can’t remember the details of the thing fully right now, but it’s pretty constant chemo for four days straight. Then I’ll get a day off to rest/barf/dance (as the spirit leads). Then my Re-Birthday is next Thursday, September 26, 2013. It’ll be a short transfusion/transplant: 15 magical minutes of stem cells swimming into my body, accompanied by a 15-magical-minute metal/hardcore playlist (thanks for that great idea today, guys!). I always wished I was born in the fall, and now I get my wish. Two birthdays, kids: twice the parties, twice the cake. All you lame single birthday people out there won’t know what you’re missing. Just a $100,000+ drug-induced haircut and the whatnot percentage chance of death…

But we’re staying positive. We’re staying positive from here on out.

I have to say, this is getting harder for me. Recently, more days than not have been heavy. Something is amiss. I’m trying to stay optimistic, but it’s wearing on me, fear is really creeping in. It’s hard to see life after this. Sometimes I can’t see anything. And the here and now isn’t too comforting either, I feel different. It’s elusive for me to explain. I’m afraid my brain is changing, like my personality shifted when I wasn’t looking, or, I have been looking but it’s happening before my eyes, uncontrollably. The way in which I experience myself right now is so different than how I ever have experienced myself before. I feel too serious to be me. Monotonous, dull, confused, self-centered, tunnel-visioned, uncertain. I have a hard time making decisions, even simple ones. My imagination and spontaneity is stunted, my wonder at the world is small and dry. The desire for that wonder and awe and love is still there, but even that feels sad and dehydrated. I’m like a boring version of myself. I don’t like being with me right now, so I can’t imagine what other people experience. I want to apologize. But even that doesn't feel right.

I’m having a hard time explaining it, how I feel, to people when they ask. I guess I don’t even know how I feel. I think about death a lot. Like, a lot. I want to enjoy and love my life and experience everything and live every day, and not care about what’s coming. But I find myself unmotivated, slow, like I don’t want to get involved if I’m just going to die. It’s a protection thing maybe. I’m trying to protect myself as well as other people from my own death. But it’s so casual the way I think and talk about death these days. And that too is depressing, the informal nature of it all. But that’s the way it is. Death happens. And it happens. And everyone else gets to or has to move on, and you miss out on what would have been the rest of your life.

And I’m afraid of dying. But even more so: I’m sad about dying. I don’t want to die, because I want to love and experience things and people. I’m not done, damnit. And it seems unfair that death is staring me in the face right now, an old man with soft grey skin and a forlorn expression, wagging a long finger. It’s close, it feels so close. And I hate that. I hate it, it’s changing me, and I don’t think it’s for the better. I don’t like it. I don’t like myself right now.

My sister and I talked about the inevitable evolution of this feeling. Of course the mental stress of the past few months is completely unprecedented. I try to imagine that I’m not me; but rather I am listening to someone else tell me the situation. I say to this person, of course, this is inevitable, this is normal, this is an expected reaction to all that’s happening around you, with this lifestyle change forced upon you, with death hovering so close by. Of course it makes sense that simple decisions feel out of reach. Imagining your own death every day is not far-fetched. You are a real person, with emotions and impressionable moods and physical limitations. All of those things are being strained right now, and you are not in a healthy state to be fully yourself.

Maybe that makes it somewhat more tolerable. But all it really does is acknowledge the inevitability of the drab feeling, and it doesn’t do much in the alleviating department. It doesn’t make it easier to be with me, as I struggle to keep my energy going, or try not to slip into my head, mulling over and about my impending mortality or the possibility that I may die very soon. It’s hard to be fully present in the now. Even though I desperately want to be fully present and experiencing the world in the fullest way that I can, because that is how I want to be living. For some reason it seems barred to me right now.

It’s not this way all the time. There are glimpses. I am not always feeling this way. I see beauty. I have indeed laughed until I’ve cried and maybe even peed a little just in this past week. Some moments with certain people have freed me. But the amount of time spent feeling this way has drastically increased over the past few weeks. And I’ve watched myself become self-conscious and moody, quiet, darker, heavier, sadder.

Perhaps I’m prolonging this by writing it all down; perhaps I am making it worse. But I can’t deny it, I feel different. And like I said at the beginning of this blog, and how I’m trying to go through this, my life: to begin where I am. To allow myself to be exactly where I am, no moods or thoughts excluded. To let everything happen to you: beauty and terror. This thing was never going to be a joyride. I knew that. I wish I could bebop and dance my way through this the whole way, but sadness has its place too. As does terror. It’s a real experience, part of the Truth, and I guess some times are spent living there. I just hope that in acknowledging them, they too come into the light and can be made free.