A Funny Thing Happened on the Way to the Retinologist

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Pat Manson

PXE Vision: By and For PXEers
by Pat Manson

 A Funny Thing Happenend
on the Way to the Retinologist

June 2009

Vision loss has little to commend it really. Even less so with serious vision loss. You drive poorly if at all, you can´t recognize anyone and maybe you can´t do your job anymore. You can´t even find things on your desk, even though it has 3 lamps on it. Despite those, er, inconveniences, it does have its lighter moments.

I suppose the first of those moments for me took place at the very beginning of my PXE journey. As everyone who has ever had a fluorescein angiogram knows, the dye changes the color of your urine to a vivid fluorescent green. In 1983, when I had my first FA, the dye was even brighter than it is today. The test went fine (although the results scared the Hell out of me), but no one warned me about the day glow pee. Later I woke up in the middle of the night to answer the call of nature. When it came out green, I let go of my [self] and proceeded to spray all around the room. It was a white tile bathroom, so my handiwork (or lack thereof) shone everywhere. The effect was dramatic. On the other hand, the contrast in color made it much easier to locate and clean up. In the morning, after the shock had worn off, it occurred to me just how funny the previous night´s incident had been.

I grew up in a family that laughs easily. My mother was a nurse and my father the son of a country doctor, so their healthy sense of humor extended to include the human body and its frailties and functions. They could manage to find some amusement in almost any occasion. I had always thought that this trait had served them well and had helped all of us get through more than our fair share of illness and grief. With that as my background, it was only natural that I would seek out and collect humorous stories about PXEers and the trouble our low vision gets us into.

I guess I began accumulating these anecdotes unconsciously, but after I began writing this column, I got a little more organized in my collecting. First, I solicited such stories from PXEers subscribing to PXE International´s ChatList. Later, Julia Holman and I did more of the same at the “The Lighter Side of PXE” session at PXE International´s 2006 Biennial Meeting. Here are some of my favorites, and I´d like to share them with you.

Joanie T. provided me with 2 great ones. Her first took place when her vision was initially failing. She recalls, “I was still working and driving at the time but was having trouble reading and recognizing certain items. I was getting ready for work after getting the kids off to school and had just applied makeup and fixed my hair to the best of my ability. I reached under the sink to grab the hairspray for a quick spritz before I left for work. I closed my eyes and sprayed all over my head, so as not to get the hairspray in my eyes, when I began hearing a very strange ‘sssss´ noise. When I opened my eyes and looked in the mirror, I was faced with the image of my hair covered in white foam. Upon further observation, I discovered that I had, in fact, sprayed my head with Dow Scrubbing Bubbles Cleaner rather than hairspray. Needless to say, I was late for work that day. I think I stopped driving about a month later.”

Her second story, also a health/beauty blunder, occurred on a cruise: “My husband had surprised me with a Caribbean cruise for our 20th anniversary. Not knowing what bathroom items were provided on the ship, I had packed various sample-sized health and beauty products, including toothpaste. Being unfamiliar with the smaller sizes and packaging, one evening while getting ready for dinner in the formal dining room, I finished getting dressed and grabbed the toothpaste and toothbrush and began brushing my teeth. Well, the taste of the toothpaste was horrendous, and I immediately spit it out, gagging. Again, upon further observation, I was horrified to discover that I had grabbed my husband´s (thankfully, BRAND-NEW) tube of Preparation-H instead of the toothpaste. What a ‘butt-head´!”

I should add here that PXEers´ snafus aren´t limited to the bathroom. One PXEer recalls that she saw an unfamiliar cat exploring her back deck one morning. Even though she knew she shouldn´t feed a stray, she couldn´t help herself. From what she could see, the cat acted lost, a little disoriented. She left food for the cat on several mornings and finally commented on it in passing to her husband. He replied that he had yet to see the cat and volunteered to wait on its arrival the next morning. Perhaps he could help identify it. His findings: His wife had been feeding an opossum all week, not a cat—and since this normally nocturnal scavenger was coming out in broad daylight, it was surely rabid.

More on pets. According to Robert Y., he called out to the family cat one night from across the room. Getting no response from the cat curled up on the floor, he called to the pet once more. Again no response. He was both annoyed and a little concerned, so he hopped up from the sofa and walked over to check on the cat. Sitting on the floor and still not responding was his wife´s purse, not the cat. At least they were both black.

Deirdre S. had a pet experience which could only be regarded as humorous when regarded after the fact. “My dumbest . . . moment came one morning while picking up the living room floor after my daughter and her puppy played there the night before,” she recalls. “I have a dark carpet, and sometimes I cannot see the small dark objects that blend in with it. I reached over to pick up my daughter´s sock and came back with a handful of . . . fresh puppy pooh. I immediately felt what it was, but it was too late.”

Similarly chagrined and amused is Linda F., who confided that she has no remaining stemware in her home, having broken all of it. The glasses haven´t been replaced either, for she has given up on their possible survival. Linda let me in on her domestic destruction and her solution after overhearing me complain about all that I´d broken in our house. But why had we both smashed all our stemware? Simple, Linda explained: “I don´t know where down is.”

Another PXEer, who prefers anonymity, shared an embarrassing work-related story. During her lunch break from her large corporate employer, she was in line at a nearby Starbucks when someone called to her from her left, the side with her greater vision loss. Seeing nothing on that side, she turned and stepped slightly toward the voice, only to find herself “lip to lip, nose to nose” with the Chief Technology Officer of her company. She froze, unsure how to handle her invasion of this executive´s space. Fortunately, he was accompanied by a friend of hers, the one who´d called out to her in the first place. The friend rescued her by interjecting some small talk, and it seemed the awkward moment had passed. Back at work, though, she began running into the CTO in her part of the building, sometimes 2 or 3 times a day, whereas she´d never seen him there prior to the episode at Starbucks. Eventually, things settled back to normal. But looking back on that period, she reflects, “I think the CTO thought I had a crush on him.”

Finally, here´s another screw-up by yours truly. Our local telephone company provides free directory assistance (411) calls for those registered with the state´s Department of the Blind and Vision Impaired. Needless to say, this is quite handy, since it relieves you from trying to try to read the microprint in the directory. One day, when I was first using the service, I misdialed 911 instead of 411. I immediately realized my error, hung up and dialed 411. A few minutes later, the police arrived, thinking there was an emergency at our home. I explained my mistake, and they were understanding, amused even. That wasn´t quite the case, however, when I repeated my error a week later. I vowed to become a more careful dialer after that.

So is there anything important about these insignificant but often hilarious miscues? I think so. It shows the same gift my parents shared, the ability to find humor in the unlikeliest of places. Joanie T. summed it up nicely: “I´m sure there will be many more mishaps in the future, but as long as they´re not really dangerous and no one gets hurt, they actually make for a good laugh. In a way I welcome them because if you can´t laugh about the situation, you might just go CRAZY!” I couldn´t have said it better myself.

Have a great summer and remember to laugh at yourself some. I´ll bet you have plenty of reasons.

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