A couple of recent medical news stories—about Bell’s palsy and misophonia–really struck home, and made me think how harshly people judge others, even members of their own family, because they don’t understand the medical condition underlying odd behavior.
I’m not talking about mental illness, but rather little-understood physical conditions that can wreak daily havoc on a person’s quality of life, making them quite disagreeable (or seemingly so), which in turn makes people react in kind.
Lonnae O’Neal Parker wrote in The Washington Post about her experience with Bell’s palsy, a disorder that disables the seventh cranial nerve, which controls movement of facial muscles. The cause is unclear and theories include stress, herpes Zoster, and bacterial infection. It strikes about 40,000 Americans each year, striking suddenly and making it difficult on one side of the face to eat, drink, smile, grimace, or close one eye.
My mother was one such person. In 1963, about six weeks after I was born, she had a bad earache and went to the emergency room. Beyond a couple of aspirin, there wasn’t much they could do, so they sent her home. The next morning, she was brushing her teeth and noticed that the right side of her face was drooping. She thought she was having a stroke and went to the doctor, who diagnosed Bell’s palsy.
In photos from that time, she looks stern, unsmiling. In fact, for years she had a crooked smile, which looked more like a grimace. She worried that she looked severe and turned people off. As a small child, I thought this was normal, and I learned to read her moods through other cues – laughing eyes or a loving tone that belied her rigid face. Looking back, I’m struck with guilt as I recall how around the dinner table, we’d josh about Mom’s “famous torqued jaw.” Is she displaying her ire or cleaning her teeth with her tongue? Ha ha. As if it were all a big joke, which to her, of course, it certainly wasn’t.
We weren’t so much heartless as clueless. Unfortunately, her doctors were not that helpful either. When she told one doctor that her eye kept winking involuntarily, he actually laughed at her.
“He thought it was the funniest thing in the world. He said, “When you’re in a restaurant some guy across the room will think you’re flirting with him!’” she recalls, still incredulous.
Another doctor prescribed Dilantin (Phenytoin), an anticonvulsant used to control certain types of seizures. The drug did nothing for the Bell’s palsy, but its side effects beget new issues, including gum problems. The doctor referred her to a ham-fisted dentist (a buddy of his, she thinks), who further aggravated the cranial nerve by extracting an impacted wisdom tooth. “He really tore up my mouth,” she says. “I lived on scotch for two days to kill the pain.”
For a time, she experienced agoraphobia. Who’s to say whether that was a result of her mortifiation about her facial paralysis or another side effect of the Dilantin, which is known to cause depression and suicidal thoughts?
Eventually, sensation returned, as it does for 85% of patients with no treatment. Today, doctors are likely to prescribe biofeedback, massage therapy, mirror exercises, and even Botox to rehabilitate the facial muscles. The most important factor in recovery, though, is taking steroids within the first 24 to 48 hours, to reduce inflammation in the nerve.
Meanwhile, at the other end of our dining room table sat my father, who (bless him) could become easily irritated, enraged even, by the sound of people eating. I mean, normal mealtime sounds, hardly noticeable by most folks, not egregious slurping or Neanderthal smacking. If someone innocently nibbled a stalk of celery or crunched a cracker, he set down his fork and gave the hapless offender The Look. Everyone stopped chewing or drinking or whatever they were doing, deer caught in the headlights of a patrol car. Was Dad going to blow his stack? Was he going to lecture us again about our insufferable “mandible gnashing”? (We love to coin phrases in our family.)
As time went on, we learned to defuse the situation, jollying him back to a rational state, even getting him to laugh at himself. To be safe, we also got in the habit of letting potato chips soften in our mouth before chewing. He’s lightened up over the years, although he hasn’t set foot in a movie theater since the original “True Grit” because he can’t bear the audience’s “trough noises.”
We now suspect that he suffers from a touch of misophonia, which Sound Sensitivity Online, a website that promotes awareness of a condition whose name means the hatred of sound, describes as “a hypersensitivity to background sounds or visual stimuli that are generally ignored by other people. More importantly than the individuals inability to block out the offending stimuli or ‘trigger’ is the acute negative emotional response experienced as a direct result of being in contact with a trigger.”
I find this information reassuring; how else to explain how my sweet old man could turn into a ranting ogre over seemingly nothing? Before I’d heard of misphonia, I considered this quirk an extension of my father’s elaborate sense of table decorum, along with butter plates and dish trivets, handed down from Nana, his Victorian grandmother and the family matriarch, who presided over family meals with a ruler by her side to swat unruly brats. Maybe she suffered from misophonia as well. My father thinks his father (her son) probably did, for he had a low irritability threshold and a hard time getting along with people. And now my daughter winces at the sound of utensils scraping plates or metal clinking against metal. At this point, it’s hard to say how much of this is genetic and how much is learned behavior. Somehow knowing there’s a medical explanation makes it easier to empathize and to unlearn hair-trigger reactions.
To my dad’s credit, even if he can’t help how he feels, he has willed himself not to overreact. That’s been instructional for me, as I (according to my husband) have inherited the misophonic gene. While I don’t fly off the handle, certain sounds as identified by Sound Sensitivity Online, seriously bug me. These include: sucking, smacking, swallowing, talking with food in mouth, gum chewing and popping, tooth sucking, nail biting and clipping, finger tapping, other people’s muffled / bass music or TV through walls…
Whew. If I didn’t have a sense of humor, my life would be a living hell. Or, to borrow a maxim from Miss Manners: “Life is full of trivial annoyances, but generally one learns to put up with them to avoid living in a state of exaggerated rage.”
Brian Vastag summed it up well in his excellent article in The Washington Post today: “Two years ago, a research team in Nevada linked an exotic mouse virus to chronic fatigue syndrome, sparking hopes among patients that a cause of the baffling condition had finally been found.
“But two other research teams reported Tuesday that the virus, called XMRV, is a laboratory contaminant incapable of infecting human blood.”
This comes after at least ten other studies have failed to find XMRV retrovirus in CFS patients. The journal Science has even issued a rare “statement of concern” about the 2009 study by the private Whittemore Peterson Institute in Reno, saying that the validity of the original study is now “seriously in question.”
Contamination of lab samples has been a threat to valid research for as long as labs have been around. Sloppy technique–or the mere insinuation–can torpedo a career. Yet according to another Science report, there is growing suspicion that XMRV, accidentally created in a laboratory working with human cancer cells in the mid-1990s, contaminates a wide range of solutions and other laboratory products used to test blood for viruses.
Two interesting reports on the mystery of chronic fatigue syndrome. Could the cause of an outbreak in upstate New York be found by analyzing spinal fluid proteins?