Saturday, March 09, 2013

Hull Breach

from the Surgery Diaries

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.

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Blogger Jim Murdoch said...

Like most people I didn’t know much about ostomies before you had your operation. I didn’t even know there was more than one kind. I knew the word ‘colostomy’—I even knew a girl who’d had one—but that was my lot; I’ve never heard the word ileostomy before today. Quite possibly you’ve mentioned it but, if you did, it never registered. I’ve just been reading about Alzheimer’s and in Keeper by Andrea Gillies she talks about her mother-in-law and poo. At times it’s funny—the woman walks into the living room with her hand full demanding to know who put this in her underwear—but it was also very upsetting. You do what you have to for those you love but most of us have a hard time with anything scatological. We like that it’s all hidden out the road. The simple fact is that everyone we meet in the street has a gut full of the stuff but as long as we don’t think about it then it’s okay. It takes a certain kind of love to not see the bag. When I was a boy of about seventeen I worked for a while in what they called at the time a Job Creation scheme where I met a young lad with the worse birthmark I’d ever seen. What made it even worse was he was in the process of having skin grafts and his face was frankly a mess. (I suppose, since the skin for his grafts came off his bum, his bum was a mess too but let’s not go there.) Anyway this guy had a girlfriend that he talked about all the time. I imagined at the time he felt he was immensely lucky to have any kind of girl at all and then I met her: he was drop-dead gorgeous, an absolute stunner. What could she possibly see in him? I guess it was what she didn’t see. It’s the whole beauty and the beast scenario. You’re an intelligent man so you knew there would be trade-offs. Perhaps these changes in you have revealed a naivety you might not have liked to admit was a part of you. I get caught out all the time when people do bad or even just selfish things because I don’t think that way and no matter how many times I see others behaving that way I never expect it; it always surprises me. Every now and then I’m not let down and that probably surprises me even more. You may never find true love—you may never have found true love anyway—but if there’s one thing that damn bag is going to do, it’s going to save you a lot of time weeding out the chaff. As for the weight, I thought everyone in America was overweight. Apparently most people here are too if you believe everything to hear on the telly. We’ve just gone on a new diet for a month to see how it affects our health: no wheat. I had no idea wheat was so bad for us. Makes you wonder if anything’s actually good for us anymore.

8:26 AM  
Blogger David-Glen Smith said...

You provide much to condense and consider: Primarily, I find emotions after a poetry reading, or after the close of a huge creative product, I find emotions hard to decipher. Once after a successful photo shoot with models the emotional distancing at the close almost felt like a train wreck for me. It was very confusing and alarming. I wanted to feel a sense of satisfaction and release, yet I was consumed with depression and regret. You used the words "fragile" and "hungover"-- the former I think is closest to my experience.

As for poetry readings, they never leave me satisfied. I become quietly angry at the audience for not being receptive for openly, basic emotional expressions on the page. Partly this is the reason I isolate myself away likewise.

10:32 AM  
Blogger Art Durkee said...

I'm not looking for true love. I gave up on the romantic mythology a very long time ago. Companionship, partnership, someone to be with, those would all be good, but as for romantic notions of true love I haven't succumbed to those fantasies for many years. It would be a shock and surprise if indeed it ever came my way.

As for weight, in fact there are a lot of people who are overweight in the USA, but not as many as the media would have you believe, and certainly not everyone. The thing is, it's an obsession of the popular culture, and of the media, that approaches addictive behavior. There IS a health crisis, but after fifty years of bad national nutrition on processed foods that's no surprise. Meanwhile, lots of folks are not fat, and never have been.

I've been 100 percent gluten-free since 2007. It's made a big difference for my overall health, but not so much on weight loss. But then, my case is not typical, due to having a debilitating chronic illness for twenty years, and the medical narrative that I am still on regarding that. Weight loss is something I must do for health reasons, not for vanity.

11:17 PM  
Blogger Art Durkee said...

Poetry readings. My experience is rather similar. I have been to a few readings by great poets that were a great experience, but that was because the poet was deeply engaged, had the ability to PERFORM the poem so that those in the audience were equally engaged. Olga Broumas did 90 percent of her poetry reading from memory, and she didn't just read in a monotone the way most shoe-gazing poets read. She chanted, sang, recited, and acted.

I learned a big lesson from that.

I find most poetry readings to be awful mostly because the poets think all they have to do is say the words and the audience will follow. No! You need to perform the poem, people! Not just read it!

The post-partum depression is something I just have come to accept as being part of my pattern. I can't prevent it, but I can minimize it, and cope with it, knowing that it's just going to happen. And I've learned to get through it in a couple of days rather than take a long time on it anymore.

11:22 PM  

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