Friday, June 27, 2003

10 Years After, I Can Hear It

I remember the summer of
1993. I will always remember the summer of

Kelly and I were vacationing in Acapulco,
Mexico. We had rented a house that overlooked Pie de la
Cuesta -- Sunset Beach -- about 15 kilometers out of the
city. It is one of the most photographed beaches in the
world and for good reason. I remember sitting each
evening on the patio perched a hundred feet above the
ocean with our chairs turned toward the dying sun. As
the glowing ball fell toward the ocean, the sky would
become a cornucopia of color -- reds, yellows, blues, of
different hues, until the last bit of fire disappeared
into the sea. That spectacle, along with a glass of wine
or two, made sleep come easy, and I remember the
tranquility of waking up in the night and hearing the
waves lapping below. I have always found something
eternal and peaceful about the sound of the

That night was no different until I awoke
about three o'clock in the morning. I laid there a
moment, half conscious, and my first recollection was
that I could not hear the ocean. What I heard was a loud
high-pitched whistle, so intense that I instinctively
put my hands over my ears. I remember wondering what the
sound could be -- a burglar alarm, a whistle from a ship
at sea, perhaps -- my mind raced to figure out the
source the noise and the pain I felt from its pitch and
volume. I leapt out of bed and ran outside, and staring
into a black moonless night, I could not determine from
where the noise was coming. Yet, it was relentless and I
wondered why none of the neighbors had turned on their
lights to try and discover the source of this din that
shattered the night.

I ran back to the bedroom,
fully anticipating Kelly to be up and about trying to
discover the source of this intrusion, but the light was
off and she was sound asleep. I remember the confusion I
felt. "How could anyone sleep through the shrillness of
this sound?" I turned on the light; she stirred, and
looked up.

"What's wrong?" she

"What's wrong? Are you kidding? That noise
is about to drive me crazy! Do you have any idea what it
is or where it's coming from?" I asked

When she answered, my life changed
forever. "What noise?" she asked. "I don't hear anything
but the ocean."

It was then I knew. The noise I
was hearing was not out there, but in here. I still
didn't believe it, and put my hands over my ears again
and pushed them tight -- no change. I went outside again
-- no change. Something had happened to me.

returned to the States the next day and I was my
internist's office that afternoon. He told me that
whatever it was, it was beyond his expertise, that I
needed to see an otolarangologist as soon as possible. I
didn't even know what an otolarongologist was, but what
I did know was that the noise was driving me insane. I
could not work; I didn't feel comfortable driving
because I could not hear the street noises that warn of
danger. I could not sleep. I could not escape.
otolarongologist performed the requisite tests and told
me that what had probably happened was that I had
contracted a virus in my inner ear, that it taken part
of my hearing in one ear, and given me condition known
as "severe chronic onset tinnitus." His bedside manner
left a lot to be desired. "It's permanent," he said,
matter-of-factly. "There is no cure or treatment. Oh,
and by the way, the most distressing part of this
disease is that an abnormally high percentage of
sufferers commit suicide. They can't stand it and take
their lives in order to eliminate the noise. So, if you
ever feel like you want to take your own life, I'll give
you the name of a psychiatrist." He left the

The profound feeling of helplessness was
mixed with anger. I paid and left, went home and
wondered what was next. Kelly, as she has always been,
was supportive, called the doctor an "asshole," and
began making a series of appointments with other
specialists of the same ilk, none of whom had much more
to offer, except more referrals to neurologists,
neurosurgeons, and various other specialists who, after
ordering up various MRI's, MRA's, and other tests I
can't even remember now, likewise, had nothing to offer
except their best wishes. In order to help those who
could not help me, I had shortly after the onset begun
what I called my "ear diary," because I noticed that
some days were better than others, and I worked hard to
try and determine whether there were environmental,
diet, or other factors that raised or lowered the noise
level. I wrote pages each day outlining the smallest
details. I had sent it to each of the doctors before my
appointment. It was apparent in each case that none had
read it. I don't like to admit it, even now, not even to
myself, but after a dozen or so doctors, I was ready to
give up. I was screwed.

Kelly, on the other hand,
had only begun to fight, got on the Internet, and
discovered that there were two world-renowned
specialists in this affliction. One was in Nagoya,
Japan, and the other in Memphis, Tennessee. Nagoya was
out of the question, but Memphis was not and two months
after I began hearing that which did not exist, I was in
John Shea's office in Memphis. To say that he had a
thriving practice would be serious understatement. The
waiting room was the size of a ballroom. Marriott hotels
had attached a Residence Inn to the clinic, solely for
his patients.
I arrived at 7:00 a.m. the morning of
my appointed, the appointed hour. I counted the number
of others waiting -- 64. 8:00 a.m. passed, as did 9, 10,
noon, 1, and 2. At 3:00 o'clock I was called by a nurse
who took me into a laboratory where tests were run until
5, when I was taken to a small examining room. My hopes
were not high as I sat there alone, half-exposed in a
gown, sitting on a cold Naugahyde examining table
feeling sorry for myself.

I sat there nearly an
hour with only my thoughts, mostly regrets of what I had
not done in my life, remorseful for not giving more of
my time to Kelly, to my children, and to my friends. An
attendant came in, an older gentleman, wearing worn
scrubs, hair out of place, and he began fiddling with
various charts and instruments. I assumed he was there
in preparation for the doctor who I was wondering if I
would ever really see. He turned to me and I nodded and
it was then I noticed the name printed on his scrub
shirt -- "Shea." He held his hand out said, "Jim, I have
been looking forward to meeting you. My name is John

"I thought you were the janitor," I joked.
He laughed and replied, "A lot of people think

After a minute of small talk, he said, "I
read your diary -- all 114 pages. Very interesting."
And, it quickly became apparent he had, refering to
various sections, all neatly highlighted in yellow
marker. I have also reviewed your brain scans, inner ear
tests, blood work," the list continued.

"And," he
said, "I believe I can help you -- if you want to help

I listened intently.

"You do
have a severe case of acute onset tinnitus. A virus most
likely attacked your inner ear on your right side, even
though by now I'm sure you believe you hear it on both
sides. You're lucky."

I laughed sardonically. "I
don't feel very lucky at the moment, you'll forgive

"Well, you should, because in 90% of these
cases, the virus takes your hearing, too -- all of it --
leaving you with nothing but the noise you hear. In your
case, after doing its damage, it arrested, leaving you
with 75% of your hearing in the affected ear."

was feeling a bit more fortunate.

"There is a
treatment. It is experimental and you will have to stay
here for 3 days. If you want it, you will be hooked to
an intravenous solution for 2 hours each day. It will
render you unconscious. There are potential side
effects, but they are temporary. In about 7 of 10 cases,
we can reduce the noise level by about 20%."

this news, I was not feeling fortunate

"Only 20%?" I asked, imploring, hoping,
for a different, more positive answer.

it. Best case. And, if you'll work with me, that 20% may
be all you need to become functional again, to live a
normal life."

"What do I have to do?" I

He looked at me and said nothing for a
moment. "You're not ready for that part yet. Let's talk
about that after you've finished the

I agreed and for the next three days
I was IV'd and, sure enough, on each occasion, within
moments, I was unconscious, but in the moments before
sleep, I did hear the noise level change, inching down
ever so slightly.

After the final treatment on
the third day, I was returned to that same small
examining room. Shea walked in. "How are you?" he asked,
and I could sense in his voice that he wanted the answer
I was about to give.

"I believe it is a little
better, Doc, but I have to be honest, I still don't
think it is enough."

"That's where you come in,"
he said, looking me squarely in the eyes.

thought about what my part was going to entail,
wondering if it was pills or injections or further

He interrupted my mental
speculations. "You have to accept. You have to stop
fighting it. You have to learn to live in the

"I don't know if I can do that," I
objected, having no idea what he was talking about, but
knowing that if it didn't involve medication, it
probably wouldn't work.

"You can, and I believe
you will. In fact," he offered,” I predict that when you
return here in one year for another treatment, you will
tell me that tinnitus is your best friend."

began to object.

"Don't try to understand now.
Just be here, right now, know that we're talking and
you're functioning, and understand that it is manageable
and that if you accept, that you will learn to manage
it, and it, in turn, will manage you. Keep that diary

That was it. He left. I returned to

The next months provided challenges. I
couldn't hear as well as I once did, and the din of
noise continued, albeit I could tell that some days it
was lower and I could function. I dutifully noted the
environment, what I was doing and how I felt when the
noise was high, what I was eating, how I was sleeping,
and how each affected what I heard.

Over the
period of that year, I learned. I learned, for example,
that salt would raise the noise level, that moderate
exercise would lower it, that after a good night's
sleep, the noise would be lower, and after a fitful
night, it would be higher. What I documented most often
was that stress would raise the noise level, but that
when I was calm and centered, it would be lowered,
almost as if my magic. It was then I figured out what
Shea was talking about. The noise, in large part, was in
my control. It was my responsibility, no one else's, to
control me, my thoughts, my feelings, my worry, my
angst, and my guilt -- because left uncontrolled, the
noise was out of control.

From that realization,
the learning continued. I found that when I was living
in the Present Moment -- the "Now" as Shea termed it --
I was not worried, fearful of the future, or lamenting
the past. There was no room for those emotions in the
present. I learned that salvation, or happiness, or
whatever I wanted to label it, was not elsewhere in
place or time. It was in the here and now. And, I
started playing a game with myself called "When Are You
Now?" If was I worried, I was in the future, and I knew
it because the noise told me where I was. If I was the
past, same result. It was only when I was here and now,
that the noise weakened.

I returned a year later
to the same small examining room, and Shea likewise
returned. I wondered whether he remembered what he had
told me, but I didn't wonder for long. When he entered
the room, he did not ask me about the noise, about what
I was hearing. He asked what I had learned.

didn't hesitate. "I have a gift, Dr. Shea, that I'd like
to tell you about."

He smiled

"I have a built-in barometer that most
people do not have. I can tell you how I am doing and
when I am at any moment in time, simply by

Tears came to my eyes involuntarily.
He handed me a Kleenex.

"Take your time," he
said. "I want to know more."

After composing
myself, feeling no embarrassment, I said, "Now is all
there is. If I can stay here, present, then I can handle
this, and more. It is when I wander from the now, when I
daydream about times past and future that brings worry
and fear and guilt, and that is when the noise is
unbearable. It's my call, no one else's."

smiled the smile of a father, and that is when he told
me, "Jim, there was something we found in your tests
this morning that I can tell you about now. The
treatments had little, if any, impact on the noise level
you hear. The treatment was a failure. You, on the other
hand, were a success."

I needed more

He patted me on the back and said, "Your
struggle will be constant. It will be a lifetime
challenge, and you have a lot more to learn. You are
fortunate because you would have never known about Now
unless that had happened. Have a great

With that, he left the room.

was 10 years ago almost to this day. And in that decade,
much has happened. I have struggled, taken steps back,
and steps forward. I have had Kelly who has relentlessly
supported me, who has loved me, and who understands now
better than any person I know. Because of tinnitus, I am
a more fortunate man, because I know whether I am moving
forward or backward at any given moment in

I can hear it.