Killer Tandems and Other Tales of Coping
One of the "joys" of having a rare affliction like mine is that there is so little you can do to prepare yourself for the challenges that lie ahead. Although the staff in Radiation Therapy could warn me of the side effects associated with that treatment, no one could tell me how to cope with everything else that had happened. How do I function as a human being?
Fortunately, it didn't take me long to realize that coping was simply a matter of two basic principles:
- Discover what you can do - then figure out how to get around the rest.
- The human body is very good at letting you know when you've done something it doesn't like.
Now, let me tell you how I've really tried to get by over the years.
Sitting Strategically
Clearly, one of the things immediately affected by the surgery was my hearing ability. We began to joke that "things no longer 'go in one ear and out the other' - they simply did a U-turn back."
As I mentioned earlier, my hearing was tested before the surgery - and, as it turned out, my right ear (yes, the one that was removed) had been the "better" ear. How do I function now??? Well, having always been attracted to voices (the old radio station experience coming into play, I guess), I've become quite a critic of acoustics over the years.
I learned quickly that I could hear fine if speakers were sitting or standing either to my left or in front of me - but not if they were situated to my right or behind me. The contrast gradually grew less apparent as I became more accustomed to dealing with groups of people - and the general effects of the surgery began to diminish.
Dr. Sullivan gave me a general hearing test during one of my post-op checkups. Although he never formally estimated a "percentage of hearing loss," he did inform me that certain sounds would be more difficult to hear than others - notably those at either end of the pitch spectrum. To this day, I find that I have more trouble hearing lower-pitched voices than higher-pitched ones. I've also discovered that vocal quality plays a role - a resonant basso poses less of a problem than a "thin" voice of any pitch.
Eventually, I learned that the best way to deal with the issue was to develop the concept I call "Sitting Strategically." This requires me to determine (as best I can) the primary source of conversation - then place myself in the most advantageous position to hear it. For instance, if I'm attending a meeting, I'll try to "aim" myself toward the facilitator. If I'm in an auditorium-style setting, I'll most likely seek out a space along the center aisle with my "ex-ear" facing the aisle, so all in-row conversation is to my left (aka the "good" side).
Group dinners and other such social situations can be more challenging. This requires knowing something about the group (if possible). If Ken's with me, I'll often place him on my right. Since he can deal with my "problem," it helps prevent others from feeling awkward about my situation. (I can also tell others that "I don't have to listen to him" - which is often good for a chuckle.) This rule is "bent" for those who have resonant voices.
Of course, there are always those who will feel uncomfortable no matter what - they know there's a problem, but they'll never remember which side is "the bad one." If such people end up on my right side, I try to let them stay there as long as I can tolerate it. If I discover I'm having too much difficulty hearing what's being said, I'll simply interrupt him/her and say something like, "I think we'll both be more comfortable if I'm over there" - and promptly change places accordingly.
For square dancing, this concept is also known as "Squaring Up Strategically." It focuses on such factors as hall acoustics, speaker placement, and caller. In some halls, I can comfortably square up anywhere and have no problem hearing any caller. In other places, I find I need to square up in certain positions if I expect to succeed - and even then, it may take more concentration on my part to do so. After all, one has to be able to hear the calls in order to execute them properly! This is especially important for those calls which require more than two people to interact at once. ("He said what???")
There are times, though, when all these "theories" mean very little. One evening, we were dancing with a group of folks in someone's home. A tape of a recent dance played - a chance to re-acquaint ourselves with a particular caller's style before an upcoming dance. (This is especially useful in the upper Challenge levels.). Alas, the tape heads on the recorder had broken - but we didn't know that at the time. All we knew was that the volume had become very soft - even when we turned the control to its "loudest" level. Somehow, I could hear the caller - as long as everyone else was quiet. So, for the next several minutes of dance sequences, we'd hear the caller on the tape, stop the tape, let me "translate" what I thought the caller said, execute what we thought the call was, then continue playing the tape and repeating the process. It was only when I could finally no longer understand the caller that we had to stop!
"Why me, of all people?" I asked. One dancer surmised that I probably succeeded because I had had the most experience trying to hear under adverse circumstances. Sure...
There was also a memorable experience during January Jubilee the year after my radiation treatments. January Jubilee became one of my favorite square dance events because (among other things) the ballrooms in the old Philadelphia Sheraton had such wonderful acoustics that I didn't have to worry about "squaring up strategically." One morning, we landed in a square with three couples we'd never met before. The gentleman to my right asked me about the sound quality in the hall, since he'd never danced there before. I responded, "Well, I don't have all my hearing, but I find I can dance anywhere in any hall with no problem." The rest of the members of the square were pleased to hear this - as it turned out, one member of each pair had some sort of documented hearing problem. We had a wonderful time dancing together - and the memory of that experience remains to this day.
Eyes Out To Lunch
Since I wear glasses, another early concern was how to wear them with only one ear. At first, the only solution we could think of was simply removing the right earpiece. After all, there was no longer any ear for it to sit on. This seemed to work - for awhile.
Unfortunately, I began to discover that things would look funny after I'd been reading for a long time. My eyes ceased to focus properly. I began telling people, "My eyes have gone out to lunch."
To further complicate matters, while I was undergoing radiation therapy, at least one of those l-o-n-g escalators in the Port Authority Bus Terminal (in New York City) was out of order each morning as I trudged to work after treatment. I used to live in fear that my glasses would reach the bottom before the rest of me. Fortunately, that never happened.
By late January, after radiation had ended, I had had it with the solitary earpiece - there had to be a better way! So, when Ken visited the optician to pick up his new glasses, I tagged along in hopes of discovering a solution to my plight. "Uh, I have this problem...," I said, lifting my hair to reveal my "ex-ear."
"No problem!" I was told. We handed the earpiece Ken removed before my surgery to the optician, and he proceeded to bend it in such a way that I could almost feel normal again. (Or as close to normal as circumstances would permit!) As the "elephant's ear" (aka skin graft) continued to become absorbed into the skin on the side of my head, I simply kept bending the earpiece more and more to accommodate it. I thought I was doing the right thing!
Then I finally got around to the long-postponed eye exam; originally scheduled for the Saturday after Thanksgiving, 1981. The eye doctor wasn't very happy with me: As a result of my constant "adjustments," my glasses no longer sat straight across my nose. This made correcting the vision a bit more challenging; though not impossible.
It took another 8 years and a job requiring constant use of a computer before I finally learned the real impact of my surgery on my eyes. Yes, my eyes had "gone out to lunch" again. Remember, the tumor that caused all my problems had sat on a nerve that controlled the entire right side of my face - that included my right eye! Eventually, we learned that because of my "adjustments," my eyes had ceased working together as a team to focus on objects. In addition, because the muscles in my right eye had atrophied, bifocal lenses were not a viable solution.
I was thrust into the wonderful (!) world of "dueling eyeglasses" in which I had to juggle two pairs: One was designed for reading, writing, computers and other "close" work. The other pair was referred to as "The Debugging Glasses" They were for what I called "the rest of life" - which I summarized as "Driving, Dancing, and TV." DDT, get it? (If you don't, DDT is a pesticide.) These made my life interesting for two years - then we found another eye doctor, who pronounced me sufficiently improved to return to a single pair of glasses. Whew!
(Alas, I've since had to return to "dueling eyeglasses" - but more about that later.)
One Body, Two Mouths
It took a year for me to discover the impact of my surgery on my teeth. I never thought to give my dentist a copy of my operating report. Although I'd been in fairly good dental health in the years preceding the surgery, I soon found myself in the dentist's chair more often than ever as the teeth on the right side of my mouth began giving me problems. Fillings had no interest staying inside teeth. Finally, the dentist told me, "I see one body in the chair, but I see two mouths." My left side was fine, but the right side had turned into a disaster area of decay.
Upon further reading and a chat with Dr. Sullivan, we discovered the cause of my problem: The fact that my parotid gland had been removed. The parotid gland is responsible for manufacturing saliva. Although I knew this was the reason I was drinking more water than I already did (and I was a major "water drinker" long before the surgery), I soon learned another important fact: It turns out that without saliva, teeth will decay as much as 80 to 95 percent faster. No wonder I was having problems!
Soon after this diagnosis, the dentist experienced the perfect timing of visiting a major dental trade show in New York City; where a special toothpaste was being test marketed. On my next visit - for yet another lost filling - I was given a tube of Biotene and ordered not to use any other toothpaste. Within a few weeks (and, yes, another problem on the right side), the dentist could already see a positive difference in the tissue. I haven't touched commercial toothpaste since. However, it took several more years - and caps on most of the teeth on the right side - to finally eliminate the problem.
Killer Tandems
One of the best things I could've done for myself after losing my ear was take Challenge square dancing lessons. Challenge is the collective term given to the most difficult levels of square dancing. (For further information, see Introduction to (Challenge) Square Dancing ) It's probably the main reason I've been able to continue dancing in spite of all these surgeries over the years.
We started our workshop in April, 1982 in the West Windsor, NJ area. We often joked that the connection between I-195 and the Garden State Parkway was completed just in time for us to begin making these regular trips across the state.
As I've told many people since, at the Challenge level "the exertion (for the most part) is more mental than physical." It's full of interesting concepts that go well beyond the traditional dos-a-dos. One such concept is tandem, in which two dancers standing one behind the other act as a unit of one. Often, the dancer standing in the "rear" position may tap the dancer in front of him/her in order to establish the unit. In the worst case, the "rear" dancer may opt to "steer" the other dancer through the movements being called. You can imagine how painful this can be for the dancer being "steered" - especially if that dancer has a sensitive shoulder! This became all too apparent one evening when a shorter woman decided to hang onto me for dear life - OUCH! I tried to be subtle about it - jerking my shoulders about to try and get her hands off of them. Eventually, the grip became unbearable and I wound up reaching up and "peeling" the fingers off my aching right shoulder. I then sat out for awhile until the throbbing ceased.
A year or so later, we noticed a collection of small badges that could be worn as a "warning" of a problem. We purchased one that read OUCH! SORE SHOULDER and began attaching it to my blouses or dresses at the shoulder blade. Yes, I was now wearing a badge on my back - and dancers seemed to enjoy reminding me of this - sigh! But I only wore it for Challenge dances in an effort to prevent what I now called "Killer Tandems," I explained. Alas, after awhile I painfully discovered that the badge was simply too difficult to read. I began to refer to it as "The Challenge Dancer's Eye Test" - and too many flunked.
We finally arrived at the current solution by 1987 - a red badge with large white letters that simply read OUCH. We also asked a badge manufacturer to create a similar badge with white lettering on black for those occasions when I wear a red dress or blouse. It's still not the perfect solution, though - Ken has joked about pasting plastic "tentacles" to the badge as a deterrent. Even though the skin graft of 1981 has long healed, there's still some sensitivity in the area - and I really don't need to find out how much remains!