When I was at Baylor rehab, they had a program in place to pair us newbies with volunteer veterans from the wheelchair crowd who had spent time at Baylor before us. I was paired with a gregarious young guy whom I would estimate to be in his late 20s, a C5 from somewhere in the Metroplex. I noticed that whenever he dropped something, he would say, “There’s a hot dog on the floor.” When I asked him about that peculiar expression, he told me that he learned it from his wife. One day we were sitting around having a freewheeling discussion, when I asked him what was the strangest or most embarrassing thing that had ever happened to him as a quad? I asked that question because I was new to the lifestyle where at times, you felt like your dignity had no value, and that to some of the staff you seemed like an object to be moved, like a piece of furniture. I could not have been less prepared for his answer.
Dave (not his real name – I don’t remember it anyway) proceeded to tell me he had a colostomy bag, and that most of the time it served his purpose well. He then described some of the times when it didn’t, which sounded pretty familiar. “Oh yeah, I have to tell you about this one time,” Dave chuckled. What followed sounded to me like a horror story. He and his wife had visited a restaurant, a fairly new, higher end deli in their neighborhood. “It had that warehouse look, you know,” he said. “The type of look that featured concrete floors, nice, steel tables and chairs, and an open ceiling, showing all the lighting, ductwork and stuff. It was kind of an expensive place,” he said. “Sandwiches were like, 15 bucks.” Like me, he needed occasional pressure coughs to, as he put it, “Feel right with the world.” As he continued to plunge into the story, his wife, who had been sitting next to him, excused herself to go to the cafeteria for a soft drink. After asking both of us if we wanted anything, she was off. “Mary (not her real name) and I typically split a sandwich, because they are so big,” Dave continued. He went on to explain that for some reason, he had been coughing a lot that day, needing a lot of pressure coughs. “At one point, about halfway through the sandwich, I needed a cough. The first one didn’t do any good, nor did the second. In frustration, I told Mary to really push hard on the third one, but I shouldn’t have,” he said, almost ruefully. Why, what happened I asked? “It wasn’t so much what I saw, it was what I heard,” Dave said. “The sound of something hitting the floor, that sounded exactly like splat,” Dave continued, now almost laughing. Your sandwich, I asked, confused? “No,” he exclaimed. “Mary and I looked down at the floor at the same time, and I turned to her and said, oh scheist.” (Or something like that) Mary simply said, “There’s a hot dog on the floor.” Dave still hadn’t specified what fell, although I was beginning to get an idea. “So, what was it,” I asked more insistently? “It was my colostomy bag, and it was full,” Dave said emphatically. At this point, he was laughing hard, but I was silent, almost shocked. What did you do then I asked, incredulous at what I had just heard. “Well, Mary decided it would be best to find the manager and tell her what happened.” I was quite surprised at where the story went from there. He related that the manager told them she had a relative who was disabled with a colostomy bag. She told them she completely understood their situation, and even helped clean everything up, but in such a way that nearby patrons didn’t notice what was going on. Dave said his biggest concern at that point was getting home without a colostomy bag on, and without further issue. I told him that I bet they were mortified. His response surprised me. He explained that the understanding response of the restaurant manager was so unexpected and such a relief, that it really ended up being a positive experience. “You think nobody understands your situation,” Dave said, “because that has been the bulk of your experience. Because of this ladies response to our problem, we have been back a number of times to that restaurant, and we have recommended it to many of our friends. You’ll be surprised at how understanding some people can be,” Dave concluded. Twelve years down the road of my own journey, I can only say – Amen brother!
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