It becomes clear to me why having this ostomy makes me feel so unattractive. I'm fat, I've got an ostomy, I've never felt so sexually unattractive as I do now. And I've been rejected numerous times precisely because of the ostomy. Then again, what do you expect? Most people can't deal with things outside their normative boxes.
And I figured out why, this morning, knowing that friends have been sleeping together in the next room, and myself wanting to go nude today but knowing that I probably won't. I feel completely open and naked already, so why bother?
This isn't a warm-up to a pity party. It's a moment of clarity. It just happens to be about stuff most folks never want to have to think about.
It's that this ostomy is like a breach of integrity. A hull breach. The appliance is like a patch job on an oceangoing vessel, and you have spend a lot of attention on the patch job so that the ship doesn't sink. A breach in structural integrity. If you don't give it lots of attention, this ship will fail.
There are days when I hate it. Hate having to give it this much gods be damned attention. Hate having to think about it all day long, as it constantly demands my attention. Hate having to deal with it when the appliance does occasionally fail, ad there is a mess to clean up. I have lost entire days to this, where nothing else gets done. Some of my friends who have had friends with ostomies, or have themselves had a short-term ostomy, think they understand, and they mean well, but they don't, really. A colostomy is not the same as what I have, a high flow ileostomy. A colostomy is still a once or twice a day thing. But I have to empty the bag multiple times every day, and if I wake up in the night, usually then as well. It's like a demanding baby that won't stop crying. It's like a Siamese twin you cannot ignore. It requires hours of your attention daily. Not minutes. Hours. So there are days when it is hard not to resent it, even when you know it has saved your life and is keeping you alive. Even though I am grateful for being alive, and no longer have a deadly chronic illness, I have this shitbag now, and my quality of life is not significantly improved, nor has it reached the level promised to me when I first agreed to this surgical journey. Life hasn't always gotten better, although it is sustained. I am alive. I am still here.
This breach in hull integrity not only makes me feel unattractive, it is proven to turn people away. No one wants to hear about it. It brings out in many people that same kind of uncomfortable avoidance and insecurity that you see when someone who has never thought before about their own mortality confronts a dying child: when what they have always taken for granted is called into question. People might care for you, but they no longer know how to express it. With an ostomy, even a hug can be a problem. You can have no idea how isolated this hull breach can make me feel. It is capable of denying me even simple basic human contact. How would you feel when you see even people who care about you become tentative about giving you a simple hug? When you need hugs more than you ever have before?
I am struggling with this isolation, even alienation, a lot right now. This entire week has been a battle to just stay afloat. Yes, its depression, shut up with the convenient and misleading labels. I struggle against throwing a self-pity party. I struggle all the more when I see everyone around me making contact, making connections, and I feel excluded. People ask me why my mood is not better, when so many things seem to be going well for me, or at least better. They want me to be upbeat and positive, and the best I can do right now is not be dark and brooding. Call it neutral bouyancy. Call it trying to trim the battleship so that the hull breach doesn't sink it.
A couple of months ago I wrote a song. It was one of these occasional pieces where I sit down at the table or piano, with no plans, then inspiration takes over and a few hours later I have a finished poem, a finished song, a finished essay, usually needing little revision. Experience has taught that I can rely on this kind of inspiration happening often enough to be pragmatic about it. I don't take it for granted, and I also know it will come over me a few times a year. So a couple of months ago, I sat down to play and started working. The words came with the music, at the same time, which is a little unusual. The song, more lieder than folk song, is titled "Still/Here."
It's a simple song, musically, but there's a lot of emotion in it. The song is about survival, about having survived death, on a level that's underneath the surface of the words. You are still here. You are still, here. What lies underneath a song like this is hard personal experience. Its not obvious in the lyrics, although as with poems if you look for buried layers of meaning underneath the metaphor you can find them. What have you survived, that you are still here. What have you lost, that returns to the light.
Last night, I performed this new song for the first time in a concert setting, before a room full of people who had never heard it before. You could hear a pin drop. It was perhaps a little scary. The song ripped something open in me, opened a door to these emotions and deep feelings I'm talking about this morning after. I felt naked. (I feel naked, still, lying in bed in the morning, here, not having put clothes on yet, and not really wanting to.) What small amount of the gift of bards that I might possess was in full operation. I really felt the song as I was singing it. Felt it on every level, more than I ever had. There was applause, although I pretty much ran off the stage. I had to step out of the building, and get my feelings back under control. You know, lest I be weeping uncontrollably, that sort of thing. Getting back to center took awhile. And I have been feeling open and vulnerable ever since. I got almost no comments about the song afterwards, which I don't know what to think of. It would not be the first time that an audience doesn't know how to respond to something of mine. I can guess why, and I don't feel like it at the moment.
I don't feel fragile or hungover this morning, the way an emotional experience can leave you the next day. I feel strong. I also feel very open and very vulnerable. I will be performing the song once again tonight, though I doubt it will be the same. I imagine it will be much more controlled, less of an upwelling of deep waters flooding. After all, the flood already happened, the waters are still settling. I am very much feeling my feelings this morning, so there won't be any surprises on that front. The emotional hull is breached as well as the physical. How do we go through our lives with these walls keep us so separated and safe? When that's an illusion, the grace of this wound, and it is a grace, is that I have no more illusions about safety, security, or boundaries. I don't take any of this for granted anymore.
I am still here. The rest of it is a matter for moment-to-moment attention. Keeping the ship afloat, checking the hull patch every so often, making sure we're trim and sailing on. It's enough to just be still here.