By Nurit Drory
A few years ago, an ostomy came into my life, and nothing was ever the same again. Talk about having to adjust. Well, you all know about that.
But my situation was a little different. You see, I learned how to empty the pouch while watching the nurses in the hospital. Then, at home, I was getting pretty good at it, when suddenly, after only one week, my husband insisted on doing it.
Well, I couldn’t really refuse, considering it was his! His ostomy, just like his two surgeries and his seven weeks in the hospital. What could I say? “No, you can’t have it; it’s mine!”?
Just like a man. I perform a difficult task for seven whole days, eight times a day, and just when I’m getting the hang of it, he wants to take over and get all the credit.
So I said, “Yeah. Sure. Go ahead. Be my guest. It’s all yours. Really. I understand. You want to be independent. Just like the kids. You’re all the same. One whiff of freedom and you forget. Me? Oh, don’t worry about me. I’ll be ok. Hand me that Kleenex over there, will you?”
I felt like the nursing mother whose baby is about to be weaned, or the father teaching his child to ride when the bike suddenly takes off on its own. It’s great when your children become independent. It proves you’ve done your job well as a parent. But partners, that’s a different story. We tend to get possessive. Nobody likes to be rejected. After a week of close proximity in our romantic little bathroom, I was growing accustomed to his… well.
After that, I went into withdrawal… for about 45 seconds. It took me only 45 seconds to figure out that it’s not over yet. I still have a role to play. He may know how to empty the pouch. But changing it? He knows zilch about that. What’s more, he doesn’t want to know.
My husband told our home care nurse he’s never going to look at that thing, let alone change it. “You can’t fool me,” she says. “You just wanna keep all the pretty young nurses coming every day. That’s it, isn’t it?” She laughed out loud and then she looked at me. A long time ago, we were classmates in nursing school, Sam’s nurse and I. And I knew that look.
“Oh no,” I said. “No. No. No.” But it was no use. She was smiling. “Come on. You can do it. It’s not that difficult. Anyway, I’ll help you.” So there we were, my husband and I, joined below the bellybutton, forever. His bellybutton, of course.
I can’t really blame the nurse. She probably got tired of my stories. Right from the beginning, our nurse got two patients for the price of one. One day during her first week here, she found Sam waiting in bed as usual, and me, pacing around the room in tears.
“What’s wrong?” she asked. “I can’t do this anymore,” I answered. “I can’t do anything right. We don’t even have one plastic bag left.”
Yup. It’s the little things that can break the camel’s back. Usually, the stories we exchanged were less dramatic than that. And eventually, the three of us got to know each other very well. One morning, quite a long time later, I’m perched on my computer chair on the starboard side of the bed, and the nurse is performing some major tricks with her hands on the leeward side. Looks a bit like a puppet show, except that my husband is both the star and the audience. I don’t know whether to laugh or provide background music. The nurse takes off the old pouch, washes the stoma and gently pats it dry. I’m looking at it sideways, remember? From where I sit, that stoma looks, ya ready for this? Like a strawberry tart. There’s a nice pink part all around that could be the crust, with a cherry red berry in the middle. “Almost good enough to eat,” I blurt out.
Oops. Wrong move. You’re allowed to think those things but not to say them. I look at our nurse and she looks at me and… nothing. She pulls her fingers out of those tricky gloves and goes on with the show. Remember, she’s been visiting us for almost a year and we’ve made a lot of progress. A few months later, my husband learned how to cut the hole in the wafer by himself. Well, I don’t know what you couples fight about but this marked the beginning of the size debate for us. He’d cut the wafer and I’d pronounce: “Too small.” “Where?” “Up and down.” It’s not my fault if his up-and-down did not match mine. This problem is probably a lot more common than most couples are willing to admit.
Obviously, I was referring to the diameter, on the diagonal. All he needed to do was measure it on my little green plastic ruler. But it was not obvious to him. He kept asking if I meant width or length, and I couldn’t answer that. Nobody can. “Our” stoma is irregular in shape.
All those lovely patterns of different-sized circles to choose from and our lucky stoma is curved like a lopsided violin. How should I know which part is the width?
Another year went by. Our nurse discharged us. Case closed, as Archie Bunker might say. Closed but not forgotten. My independent side regrets to announce that my husband and I are still not yet completely separated. (I’m beyond wondering if this is normal.) My codependent side is pleased to introduce new uses for some of our supplies. For example, the lovely box, formerly used to hold pouches, will comfortably store exactly 12 cassettes. And with just one long colourful scarf, you can transform all these wafer cutouts into a lovely Hawaiian lei.
Speaking of Hawaii, not every ostomate is fortunate enough to have a helpful spouse like me, a loyal and dedicated knight on a white horse, who comes charging at airport security guards to protect her mate, just as he’s doing very well on his own, thank you very much. That little rescue operation in Honolulu this winter earned my husband a half-hour interrogation session in a tiny room with three customs officials instead of just one. When he came out swearing in Hungarian, I knew I’d done something wrong. I promised never to help him again, but when we arrived in Vancouver, he looked so vulnerable.
I’d love to say I’m cured now but it’s not true. Just ask my husband, who’s out looking for a new job for his wife. After he took over the care of his own stoma, I started reporting on its condition to anyone who asked, from nurses and doctors to family and friends. The pay wasn’t very good so I switched from talking to writing. I figured there must be some other spouses who could relate. If I could share my story in front of the whole conference, just think of all the helpers I could inspire. And maybe get on the radio. Appear on television. UOAC today. Brandon tomorrow.
Wait. I’m told there are privacy issues. Personal rights. Professional ethics. Common courtesy. A tide of conspirators rising up against well-meaning misunderstood helpers like me. Well, I will not give up. Don’t tell my husband, but if you want my autograph, please ask. Yes, the ostomy belongs to my husband, but every word of the story is mine. All mine.
- Note: A Spousal Ostomate, on August 20, 2005, Nurit Drory told her story at the Closing Banquet of the 8th Annual Conference of the United Ostomy Association, Inc., in Winnipeg. A writer, author, and radio talk-show host, Nurit is the Secretary of the Winnipeg Ostomy Association.
Via Inside Out On-line Sep/Oct 05.
Editor’s Note: Memories are all that we have now of Sam, the Music Man and his wonderful melodies, played so beautifully on his harmonica. We remember his special “tradition” of playing Silent Night for many years at the end of our Annual Christmas Luncheon. Sam last played “Silent Night” on Dec. 6, 2015. Sam passed away March 2, 2016.