Many of you who are family or good friends are aware that two years ago I was suddenly afflicted with an inability to taste food as it normally tastes. All food and all drinks tasted different than they should; some foods were barely edible and other foods tasted so bad I would have to spit them out. Since this happened at the same time I had a sinus infection, the doctors assured me that my taste would "come back," as if it had gone someplace but shortly would return. I could not convince them that I did not have "no taste" - like when you get a cold and can't taste any of your food - but rather everything tasted unlike anything I had ever tasted before. My "taste" hadn't gone anywhere, but it had changed.
I later learned that doctors do not like to hear people say their taste is "off," that nothing tastes right. The reason is that unless they can find that some medicine the patient is taking has caused such a change, they know that there is nothing that can be done. They have given this condition the name Dysgeusia, which mean "impared taste." They think it has something to do with the nerves in the taste buds. And because it is such a rare condition, there is no research going on, no support group, no nothing to to look forward to, other than the remote possibility that one day the patient may wake up and have their taste buds working normally again.
The upshot of having this condition means I have to build the rest of my life around what and how I am going to get the vitamins and minerals into my body that I need to stay alive. Why go out and spend $50 on a good meal if nothing tastes good. Why bother cooking anything from scratch if you can't tell whether or not it is good or if it is seasoned correctly. And how can you make people understand what you are talking about? A cup of black coffee smells exactly the way it should, but when I take a sip of it, it tastes as if someone added 1/2 cup of sugar and 1/4 cup of salt to it. And then remember that everything I put in my mouth has that same kind of dramatic change on how I taste it. There is nothing, and I mean absolutely nothing, that tastes good. Some things are edible and drinkable; other things are not. But NONE are good or worth eating.
I have to keep telling myself that there are worse things in life that could befall a person than this. I gave myself one year to gripe about it, and then I have tried to just shut up and live life as best I can. Yes, I have lost weight. Yes, I pretty much use frozen food now. Yes, I don't like to eat at other people's house because I just might not be able to eat anything they serve me. Yes, I've been treated for anemia, constipation and probably should, on some days, be treated for a mild case of depression. But this is my life now, and it could be worse, I tell myself.
Yesterday I began reading a book by Oliver Sacks, a physician and Professor of Clinical Neurology and Psychiatry at Columbia University. He has written some fantastic books that you've probably heard of: The Man Who Mistook His Wife for a Hat, An Anthropologist from Mars, Awakenings (which was made into a movie) and several others. He has just come out with a new book entitled Musicophilia, and it deals with people whose brain plays music for them, unbidden and unwanted. There is much I don't understand in Sacks' books when he talks about medical and scientific things, but his "case histories" are among the most amazing things I've ever read. And this book is no different.
Let me share a paragraph of two from one of his case histories in this new book: He got a letter from a woman he calls June B, a charming and creative woman of seventy, who tells him of her musical "hallucinations." She was visiting her sister and brother in law in November of 1994 and when she turned off the TV and started getting ready for bed, she heard "Amazing Grace" being played over and over. She checked with her relatives, but they were watching a football game. She stepped outside to see if there was a church nearby, but there was not. She finally realized the music was in her head. In the letter to Dr. Sacks, she included her "play list," which included "Amazing Grace," "The Battle Hymn of the Republic," Beethoven's "Ode to Joy," the drinking song from La Traviata, "A-Tisket, A-Tasket," and "a really dreary version" of "We Three Kings of Orient Are." "One night," Mrs. B wrote, "I heard a splendidly solemn rendition of "Old Macdonald Had a Farm," followed by thunderous applause. At that moment I decided that, as I was obviously completely bonkers, I'd better have the matter looked into." This is found in his book on pages 79 and 80.
But not all of his clients have had such easily identifiable tunes; sometimes it may be just a mish-mash of notes and tunes, and repetitions of bars of music until the person thinks they will go mad.
Now, as I read these case histories (and remember I am just on page 80 of the more than 300 pages) it occurs to me that I'd just as soon keep my own affliction as to have one of music playing in my head all the time. Maybe "cool jazz" wouldn't be so bad, but if my brain turned on Country Western music, I'd probably decide to turn the music off one way or the other! Think of waking up in the night knowing that the minute you raised your head off the pillow to go into the bathroom you would get Stravinsky's "Rites of Spring" playing over and over in your head. Or worse, I might get my brain record stuck on Joe Cocker's "You Are So Beautiful," which to me has to be the epitomy of brainless nonsense. But the worse one of all would have to be Harold Barlow's 1950s tune called "I've Got Tears in My Ears" - do you remember that one? The words were:
I've got tears in my ears from lyin' on my back
In my bed while I cry over you
And the tears in my ears, they're off the beaten track
Since you said "It's goodbye, we are through"
So if I should get water on the brain
You will know you're the one who is to blame
I've got tears in my ears from lyin' on my back
In my bed while I cry over you.
There are two more verses to it and it just gets worse.
So I have a suggestion for you: when you start feeling put upon by your body's aches and pains, just remember, no matter how bad things can get, having music on the brain, especially if you couldn't choose the tunes, could be infinitely worse that what you've got now.