“It’s a good thing you’re awesome.” – Chapter 9

True . . .

Every luxury must be paid for, and everything is a luxury, starting with being in this world.
~ Cesare Pavese

Thinking I Have Time – Part 3

When I woke up in that recovery room on New Year’s Eve 2009, I really wasn’t sure where I was. It had been years since I’d been in a hospital, and the room seemed HUGE, three times as big as seemed right. And when I asked the doctor what day it was, I literally had no idea how much time had passed between them wheeling me into the operating room and that moment. My poor friend Sabine had been waiting, all those hours (I think it was at least six, maybe more), terrified that she would get the phone call that begins with, “I’m sorry, but. . . .”

I remember very little of those first few days, actually. By the time they figured out just what was wrong, my body had gone septic, infection everywhere. I was so swollen with fluids from this infection that I could not close my hand, make a fist – the fingers were like fat, shiny sausages that physically could not bend. My legs, long, tight-skinned balloons that no longer had visible ankles. Once a day they made me stand up by the side of the bed, trying to keep me moving even a tiny bit so that healing would begin – I could barely manage that. It was not till the final week I was in the hospital that I actually walked again. I could not know it then, but those six weeks were the beginning of the loss of my independence. Since then, I have rarely been able to handle the activities of a normal day by myself, or without crumpling into an exhaustion that leaves me useless for hours.

Sabine has told me that she came in to see me in those first few days; I have no memory of that visit. She remembers me hooked up to so many wires and tubes and IVs, several machines whirring and beeping to keep me alive, that she dared not even try to touch me. She watched as the bed’s mattress – one of the special ones in their ICU – rolled in a constant wavelike motion, working to prevent the development of pressure sores from all the time I’d be lying there, unable to move.

They had taken out 90 percent of my colon, but the portion remaining was still diseased, still teeming with “colitis ulcerosa” and raw as an open wound – which is, basically, what it was. The doctors dosed me with steroid creams and suppositories at least twice a day, pushing them directly into the six inches of large intestine I had left during the next five weeks as they tried to bring it under control. I told them I understood they had to do it, but I screamed every time with the pain of it. They hoped they would be able to heal the “stump” that was left, leave it intact so that when I went back home, I might have reconnective surgery and manage to retain something close to a normal digestive tract. I understand that they didn’t want to take all hope of that away from me by removing the entire colon in that first surgery. In the end, it didn’t matter – the stump was removed in June 2011, here at home, after much deliberation. But at least I had some time to adjust to the idea.

The second surgery in 2011 gave an irrevocably permanent stamp to another change in my body. During this first surgery, having removed most of my large intestine and the end of the small intestine no longer being attached to the stump of nonfunctional colon, I now had an ileostomy. I knew nothing about them before this – had known one person who had a colostomy (a different thing altogether), but what I did know was, only “old” people had them. I was NOT prepared for the sight of that small flesh-coloured bag stuck onto my stomach, into which the open end of my small intestine now spewed the wastes of my body, uncontrolled. Again, I don’t remember even seeing it until the last week or so in the hospital when the stoma nurse came to show me how to empty and apply the bags. I simply blocked it out. And then was terrified when I realised I was going to have to take care of this . . . “deformity” myself.

A stoma is simply the end of your small intestine, sticking out of a hole in your abdomen. In my case, permanently. It’s red, about an inch or so long, has no nerve endings, but it does move, with that peristaltic rippling that is a fundamental part of the digestive process. I didn’t want to touch it – but I had no choice. Even now, three years later, I still look down at the bag sometimes and ask, “How did this get here?” I talk to the stoma when it’s “misbehaving” – spewing waste all over me and the tub when I’m trying to take a shower before sticking a new bag onto my stomach. I do not, however, go as far as some ostomates – I refuse to name it. It’s not a separate entity, just a part of my body that should be on the inside, but of necessity – and to save my life – now is on the outside.

I’ll talk about my adjustment to that new aspect of my life another time; it’s a chapter of its own, trust me. For now, what I remember about those first few days of 2010 is precious little other than pain, confusion, trying to ask questions of those doctors and nurses who could speak English, and simply struggling, one day at a time, to stay aware and alive. There were many new troubles yet to come.


I don’t have any photos of the earliest days, but once I could actually sit up ( a week or so later, I’m not sure exactly), the nurses gave me a treat one day, and let me use one of their computers for an hour, watching me carefully to make sure I didn’t exhaust myself. And yes, I was connected in some way to most of those machines you see.

More tomorrow.

Me in the ICU of the Austrian hospital, mid January 2010


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