From across the apartment, my girlfriend smelled smoke. "Is something
burning?" she called to me in the kitchen. No, everything's fine, I yelled back.
A few minutes later, she came in to investigate. She found me washing dishes,
oblivious to the smoking George Foreman grill beside me. "You're so dying in a
fire," she said as she yanked the plug from the wall.
I don't know why I didn't see the smoke, but there was good reason I
didn't smell it. Like an estimated 14 million Americans, I suffer from smell
loss. Like a smaller number of them, I can't taste, either. I can occasionally
appreciate a flower's aroma or food's flavor, but only vaguely and
superficially. My imagination helps fill in the blanks; but when I'm
blindfolded, I confuse mint ice cream and peanut butter ice cream. My
girlfriend, who has the olfactory capabilities of a bloodhound, has run me
through this test numerous times. She, like most everyone else I tell about
this, simply cannot understand my experience.
I have a hard time explaining it myself. It's as if my tongue and nose
can sense differences -- water tastes different from juice, say, and unscented
air smells different from perfume -- but the differences are faint and
forgettable, and I have no ability to identify them. Chocolate is strawberry is
scrambled eggs.
I've known about this for years, but have no idea when it started.
After all, I never had a basis for comparison. Unlike someone with vision
problems, I couldn't simply put on glasses and see what I was
missing.
In a way, I'm lucky. People who suddenly lose their sense of taste or
smell after decades of trusting it can find the change so devastating that they
fall into depression, lose weight or develop anorexia, according to Norman Mann,
director of the Taste and Smell Center at the University of Connecticut Health
Center in Farmington, Conn. I've experienced none of that. In fact, I'm
untroubled by it -- except that after the smoking-grill incident, I'm determined
not to die in a fire. So I signed up as a patient at Mann's center and went
through a battery of tests during three appointments in September.
The center is one of a few specialized taste and smell clinics across
the country, including one on MacArthur Boulevard in the District. Their task is
not easy. Chemosensory disorders come in numerous forms, each with its
distinctive Greek tag: absent ( anosmia for smell; ageusia for
taste) , diminished ( hyposmia/hypogeusia ), distorted (
dysosmia/dysgeusia ), altered ( aliageusia ) and phantom smells
and tastes ( phantosmia / phantogeusia ). And because malfunctions
can be caused by a wide range of problems -- from chemical exposure to brain
tumors to even seemingly unrelated things like Alzheimer's disease -- the
clinics subject patients to a host of tests in search of the problem's
origin.
In this multidisciplinary approach, a patient may see a dentist,
neurologist and otolaryngologist (ear, nose and throat doctor), undergo a
general physical examination and even receive an MRI scan. The tests run about
$2,500 at UConn and are usually covered by major insurers.
Some patients are referred by doctors; others stumble across smell
centers on the Internet after having had their problems shrugged off by
clinicians who do not know how to treat them or do not believe they are
serious.
"They don't know what to do, they don't know where to go," said Robert
Henkin, director of the Taste and Smell Clinic in Washington. At UConn, Mann has
had patients break down and hug him.
For some patients, though, sympathy is all they'll get. When smell and
taste loss can be linked to a problem such as acid reflux or diabetes, treatment
of that condition may restore the senses. However, if the loss resulted from
olfactory-nerve damage caused by head trauma or a viral infection such as a
cold, there is no reliable cure, said Barry Davis, director of the taste and
smell program at the National Institute on Deafness and Other Communication
Disorders, part of the National Institutes of Health. Sometimes the nerves will
regenerate and senses will be restored, and other times they won't.
"I expect that taste and smell clinics are frustrated to a certain
degree, in the sense that they see people they cannot help," Davis said. "They
can't give them bypass surgery, they can't give them antibiotics, they can't
give them some magic bullet. All they can do is tell them the extent of their
problems and say, 'Sorry.' "
Sometimes, patients come in complaining of a loss of taste, but only
suffer a loss of smell, according to Henkin. They confuse the two because taste
is so dependent upon smell. Then, too, olfactory nerves do not regenerate as
quickly or effectively as taste cells do, and they are more delicate and open to
exposure. "You can close your mouth. You can't really close your nose," Henkin
said.
When food is chewed, odors go to the back of the mouth, where a
properly functioning olfactory system translates them into flavor. When the
system malfunctions, taste often remains intact -- that is, the mouth can still
distinguish among sweet, salty, sour and bitter. (It can also appreciate
temperature and texture.) What's missing is flavor -- that sense that lets you
savor a lemon drop as lemony, salsa as tangy, ice cream as not just sweet and
cold but mint chocolate chip or pistachio. Many patients who complain of a loss
of taste are really just experiencing a loss of flavor, and can sense the four
categories of taste just fine, Henkin said.
This is what we established on my first visit to the UConn clinic,
where I spent two hours smelling bottles of diluted alcohol, trying to identify
canned scents, and swishing dozens of liquids around in my mouth to rank them by
their taste. The scents were a failure: Of all those placed before me, I could
recognize only Vicks VapoRub. Now, that's depressing. Imagine if everything you
smelled could only be categorized as either "Vicks" or "not Vicks."
The liquids, however, were more promising. I could generally tell the
difference among them, although they tasted weak and I continually confused
bitter with sour. I was later told that one of my problems is hypogeusia
(pronounced hypo-GOO-zee-uh)--or diminished taste. That may explain why, in
college, I put melted M&Ms in my grilled cheese sandwiches.
Open Wide
When I'm at restaurants, friends sometimes ask me why I order what I
do.
After all, if I can't really taste food, why do I care? There are a few
reasons. For one, I have to order something . No waiter has ever said to
me, "We'll make you a tasteless meal because you can't appreciate our menu." And
although my preferences may be based on habit, they are real preferences. I
enjoy food on my own terms -- the texture, the modicum of flavor I can mentally
expand upon -- and never really focus on how I'm experiencing it differently
from the people around me.
When people say they pity me, I tend to go lowbrow: At least I can't
smell farts, I joke. But in fact, my loss of smell may have helped define who I
am. I became a vegetarian at 13, long before anyone else I knew had done it, and
never fell victim to the cravings that undo some others' resolve. I like to
think my experience taught me to follow my convictions, although now I suspect
success came too easily. A steak, to me, might as well have been soy.
On my second visit to UConn, I saw dentist Joseph D'Ambrosio, who
checked for signs that my problem was mouth-based. Abnormal saliva production,
such as saliva that is too thick or in short supply, can trigger taste loss
because saliva is needed to disperse taste stimulants to the taste buds.
Inflammation or infection inside the mouth can also be to blame, reducing blood
flow to the tongue and thereby damaging cell receptors. My mouth was fine,
though.
D'Ambrosio said visible signs of trouble in the mouth are often linked
to more aggravating chemosensory problems, such as burning mouth syndrome or
distorted taste. Patients may complain of smelling or tasting metal even when
they're not sniffing or eating anything. Washington's Henkin said he recently
treated a woman who described her experience as like having a dead mouse in her
nose.
With an oral problem ruled out, my third visit began with the nose. I
saw otolaryngologist Denis Lafreniere, who checked for any abnormalities that
could lead to smell problems. Common causes include tumors or inflammations in
the nasal canal, which can obstruct the flow of odors. They can be treated with
corticosteroids, after which smell commonly returns. Lafreniere stuck a long,
fiber optic telescope up my nose -- a uniquely unpleasant sensation -- but
reported nothing overly troublesome. He did find that I have a deviated septum
-- meaning the cartilage dividing my nostrils is off-center -- but he said that
by itself does not cause smell loss.
So it was on to the final stop: Norman Mann, the director of the
clinic. He gave me a full physical exam, because he said he sometimes discovers
undiagnosed problems that cause taste and smell loss. He's found diabetes in
patients, and some who come to him learn their loss of senses is the first
symptom of oncoming Alzheimer's or Parkinson's disease, he said. (For other
elderly patients, the sensory loss is more natural. Smell and taste diminish
with age.) With me, though, there was nothing noteworthy.
That leaves two possible diagnoses, he said. I have a slight loss of
taste and a significant loss of smell, and that's either because of a long-gone
viral infection or because I was born with a defective olfactory system. The
latter is unlikely, he said, because congenital loss is usually absolute, and I
still have some semblance of smell. If it was a virus, he said, there's only a
minuscule chance the senses will return. Damaged olfactory nerves can
regenerate, but they usually do so within a year of the smell loss. "If we see a
patient who has loss of smell for two or three years, the prognosis is poor," he
said.
Looking Ahead
There is some hope: "We see strange things once in a while," Mann said,
including a man who regained his senses after seven years. Instead of holding
out for that, he said, my best bet is to buy a gas detector and make sure the
batteries in my smoke alarm are good. I may not smell things, but I still can
avoid a fiery death.
As I went through this process, my friends joked about all the
unfortunate outcomes that could result from a renewed sense of taste. What if I
discovered I hate the foods I thought I like? Or what if I become so enamored
with food that I ballooned in weight? (Mann said he's heard of the second
happening, but not the first.) Instead, though, all this talk made me consider
for the first time what it would be like to really smell and taste -- only to be
more aware of what I'll always be missing.
But then again, it's not so bad. I can always go to a concert and not
smell the sweaty people around me. I don't mind talking to someone who has bad
breath. And if I still wanted to put chocolate in grilled cheese sandwiches,
nothing would stop me.
Jason Feifer sniffs out stories regularly as a reporter in
Massachusetts. To comment on this story, e-mail
health@washpost.com.
