January
28th, 2011 was a day my wife
and I had been looking forward to for the previous seven months. It was
the day
we would be leaving on a cruise ship—our first cruise
ever—for a week-long
journey into the warm, tropical, clear blue waters of the Caribbean.
Our cruise
would take us to islands that promised lush rainforests, historical
sites, and
sandy, sun-kissed beaches. It would be a week away from the dry,
skin-cracking,
cold winter of the high desert. Indeed, the seven day adventure did
live up to
what was promised. It also brought on a completely unexpected and
unwelcome
surprise.
Prior
to
January 28th, I was physically well balanced, active,
athletic, and
full of energy. I rode my bike regularly, swam weekly, loved going to
the grocery
store, enjoyed a fairly active social life, took long walks, hiked in
the
mountains when I could find the time, and loved to take long drives. My
wife
and I talked endlessly about all the places there are to see in the
world, the
places we most wanted to see, and the ways we would get there.
After
the
cruise, life, for now, has a whole new, bizarre, terrifying, confusing,
almost
all-encompassing component to it. Here's what happened.
As
the
ship departed from Port Everglades, we were inside, listening to a
presentation. Not thirty minutes into the voyage, I began to notice
that
everything around me was beginning to shift in my vision. Though I had
been on
much shorter water voyages, like ferry rides, kayaking expeditions, and
such,
this was a new sensation to me. The room began to rock and bob and make
quick
but subtle shifts every which way. And upon standing after the
presentation, I
noticed my sense of balance felt compromised; walking a straight line
was
suddenly quite a challenge. I was sure I was simply feeling the motion
of the
sea, and gradually became “used to” the motion over the
ensuing seven days. I
can even say I came to sort of enjoy the motion; it felt like I was
being
gently rocked—soothed and comforted by the ways of the ocean.
Now, more than
two months later, I truly find myself wondering if I would have been
better off
had I not enjoyed the motion. Did I become so “used to it”
that I can't get it
out of my head now?
When,
upon disembarking from the ship on February 4th, the feeling
of
being at sea continued, I assumed I was simply “getting my land
legs back.” I
had been through similar experiences after many a train ride. But when
the
feeling persisted for a couple days, I began research on the internet,
and
could not pinpoint anything specific, other than references to a
“rare, often
chronic syndrome for which there was no cure,” which I largely
ignored, for
obvious reasons. The only other mention I saw of something that
described my
symptoms referred to a common post-water-voyage condition that could
possibly
last two days—four at the most. I just assumed that the nightmare
I'd been
living through in our post-cruise Fort Lauderdale hotel room would
vanish after
we flew home.
At
that
point, the main way I could have described my symptoms was that I felt
like I
was still on the boat, pure and simple. My balance felt
“off.” I still felt as
if I, and all around me, was in constant motion. When leaning to reach
for
something, I had to brace myself by holding onto (or leaning against)
something
solid for support. It did not matter what I was doing; I felt off
kilter all
the time. Walking and squatting seemed to exacerbate the symptoms.
Also, I felt
abnormally tired, and attributed this to recovering from a long week at
sea.
Little
did I know that the flight home, three days after disembarking from the
ship,
would only further aggravate my condition. We had a short, hurried
transfer in
Phoenix to make our connecting flight home. As we rushed through the
terminal,
the rocking and bobbing was intense, making me feel as if I had to be
really
careful not to fall. Back home, picking up our truck from the airport
parking
lot, my first time back in the driver's seat since the cruise, I felt
as if I
was in a floating boat. When I described the sensation to my wife, she
offered
to drive. I told her I wanted to try driving; we were both tired and I
just
wanted to get home. Half a mile down the road, I told her I was going
to stop
because I thought we had a flat tire...the ride simply did not feel
“right.”
Upon inspection, all four tires were fully inflated. How strange this
all was!
The rest of the drive home was rather unremarkable, but I noticed that
each
time we came to a stop or rounded a corner, the sensation of being in
water would
start again.
Upon
waking the following morning, I rose to get out of bed, and had a
particularly
difficult time in the still-dark room. I dressed with care, observing
that my
balance was perhaps even worse than it had been the previous few days.
At that
point, I could only suspect that something was wrong with my inner ear.
At
Urgent Care, I proceeded to describe my symptoms, beginning with the
fact that
my right ear had popped and felt congested (to the point where I could
even
hear water squeaking in there) while on the flight to Florida. Upon
hearing
this, the nurse said “Say no more. This is very common with air
travel.” When
the doctor came in, I told him the whole story, including the fact that
I no
longer heard squeaking in my ear, but that something definitely still
felt
congested. I only knew to describe my main symptoms as vertigo and an
overall
sense that my balance was way off. He performed the usual inspections,
told me
there was no fluid in my ears, and said he suspected a mild baro-trauma
to my
middle ear. And just in case there was an infection, he prescribed me a
five
day antibiotic course, saying I should notice an improvement within a
couple
days. A few days later, with no improvement, I made an appointment to
see my
GP. In my visit with her, I told her what was going on. She also told
me my
symptoms were not surprising, given my recent trip, and prescribed
Scopolamine
patches. She suggested I wear each one for 72 hours, as well as take
Meclazine,
and told me I should be feeling better in a few days. Six days later,
having
followed all the advice, I called her back and told her I thought I
should be
referred to an ENT doctor. I called the ENT clinic I was referred to,
described
my symptoms over the phone, and was told I need to see “the only
ear specialist
in town.” The clerk at his office told me the first
available
appointment was in August, so I scheduled an appointment with him in
August.
During
this week-long period of trying to find the right way to proceed, and
frustrated by the ongoing disequilibrium, I had begun to do more
internet
research on my own, prompted by a YouTube video my wife had shown me,
which had
come closer to describing what I was going through than anything else I
had
seen. Ultimately, I was led to the MdDS Foundation website, and upon
reading
the material on the website, as well as the few other references to Mal
de
Debarquement on the internet, I realized it was highly likely this was
the
“answer.” I was both relieved that I had not lost my mind,
as well as saddened
that it appeared I had something for which there was no known
“cure.” I found
the MdDS support group on Yahoo, and posted that I was new. Friendly
voices
welcomed me, offered me encouragement, and told me also of the support
group on
Facebook. When I joined that group, yet more people reached out to
offer their
support, experience and encouragement.
I
went
back, once again, to see my doctor, and told her what I had been told
by the
ENT clinic over the phone. She said she was not sure how to proceed,
and I told
her about the research I had done and the MdDS website I had found. I
told her
about the Foundation's recommendations for Klonopin and Vestibular
Therapy. She
was delighted that I had some possible solutions, prescribed me the
Klonopin,
and told me she would begin the procedure of referring me for
Vestibular
Therapy. I asked her if it would be okay for me to take another trip I
had long
ago planned for. She said she thought it would be fine.
When
I
awoke the morning of my flight to Seattle, I realized, as I was
dressing, that
the rocking was gone. And gone it was for 45 minutes, until I began to
do the
dishes. I'm glad I made the trip before I read warnings from some of
the others
who were experiencing MdDS. Had I read those warnings, I probably would
have
canceled the trip. Needless to say, the trip did not help with the
syndrome.
Did it hurt? I don't know. All I know for sure is that now, not quite
nine
weeks since the cruise began, I am still wrestling with this bruise.
I've
been
round and round in my head, wondering, was there something I did on the
ship
that predisposed me to MdDS? The yoga each morning by the pool? Using
the
recumbent bike in the fitness center? Watching the ocean and musing on
the
curve of the horizon, the ripple of the waves? Walking laps around the
Promenade Deck? Was it something with my stress level or my basic
nature that
caused me to be one of the few to develop this bouncing, head pressing,
ear
ringing, maddening, befuddling, no-known-cause-no-known-cure kettle of
fish?
For
today, I sit with the hope offered by so many who say it will likely go
away on
its own. I sit with the confusion and uncertainty, the indescribable
powerlessness, not knowing for sure how it will look from day to day.
Some
days, I'm able to go for a nice jog, and actually say goodbye to the
worst of
the movement while I move through the air. And when the outing is over,
the
movement is back. Some days, I have to decide, last minute, that I need
to
cancel a lunch date with a friend. I am considering all suggestions
offered,
sifting through the advice, wondering, hoping.... I have tried
acupuncture. I
have tried Klonopin, and decided to put Vestibular Therapy on hold for
now. I
have an appointment scheduled with a hypnotherapist. A naturopath is
working on
finding a remedy for me. I have yet to be officially diagnosed, for who
is
there to diagnose this thorn in my head? I very well may have exhausted
the
possibilities for the potential of that happening in my city. Would it
be worth
traveling somewhere for a diagnosis? I keep hoping, before that
decision needs
to be made, that it will just go away. And meanwhile, I bounce my way
the best
I can through these weeks, sometimes flat on my back, sometimes free as
a buck
running in the woods. I do my best with the dishes, trying not to let
the
impact of the swishing water foul my mood too much. I try to rest and
take it
easy when I tire from one tenth of my “normal” activity,
but my desire to push
on and absorb the beauty and richness in life usually wins out until I
am
forced to concede and wait, saddened and frustrated, for a new hour, or
a new
day. It's my intention that someday, this compass bubble inside my
head,
separate from me now, whacking out my visual/kinesthetic perception,
reunite
with my tentacles of proprioception to restore what I've always before
known as
balance and normalcy. And it's my hope that, rare as Mal de
Debarquement is,
there will be increasing awareness of it so that effective treatments
can be
sought, found and utilized. And minimally, I feel it would be good if
doctors
(because we do tend to look their direction for health related issues),
in
general, knew some basic things about it so sufferers wouldn't feel so
in the
dark and on their own with it.
Mike
Nelson
