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.
