I am a stay at home mom with three
kids and
a wonderfully supportive husband. We
live in Denver and as a family, ski 40 plus days a year.
I can rip it up on a double black diamond ski
slopes and telemark ski. Ironically, when I stop skiing to adjust a
buckle on my
ski boot, I fall over. On average, I
bike 100 miles a week. However, I have
difficulty walking my dog without my REI trekking poles or even walking
to the
bathroom because I get too dizzy. I love
to swim with my kids, but I cannot play board games or help them with
homework. I also find going to the
grocery store almost impossible because I get too disoriented and dizzy
there. I have had Mal de Disembarquement
syndrome (MdDS) for 23 years, but was only diagnosed six months ago.
When I was a senior in college, I was
riding my bicycle to class when a car hit me. I
went to the ER and had stitches and was told I had
a concussion. Since
I was a college student and did not realize the extent of my injury, I
did not
have follow up care. I was told I had a
concussion and that the dizziness and headache would go away. The
headache
turned into a migraine or “post concussion headache” that
did not go away for
10 years! My parents felt sorry for me and offered to take me on
vacation for
winter break if I could figure out how to use the time share condo. I traded it for a free week in Tahiti!! I think I got my first episode of MdDS on
the vacation, but I was such a mess from the head injury that I
didn’t notice.
After college, my best friend from high
school invited me to move out to Vail, Colorado with her.
I always loved to ski and since I wasn’t
feeling very well and couldn’t really do a professional job, I
decided to join
her. It was the best thing I could have
done for myself. I felt better
skiing. While I still had headaches, my
overall well being improved. Since ski
bums are notorious for being unreliable, when I didn’t show up to
work due to
headaches, I fit right in!
After a year of being a ski bum, it was
time to go to law school. It seems like
everyone in my family goes to law school and it was a rite of passage
that
could not be held off any longer. I
started law school in January in Chicago, not the best choice for me. The noise of a big city was terrible.
The transportation situation was
unbearable. I could choose from going on
the EL, elevated train, or bus; neither worked well for me. My headaches grew and my overall health got
worse.
Summer vacation was wonderful. My
travel buddy from Junior Year Abroad was
an avid cyclist and invited me to go on a biking trip in Montana. We flew out to Kalispell with our bikes and
rode the Going to the Sun Road in Glacier, Montana. I
felt great on the bike! I am grateful my
friend introduced me to biking. Since that
trip, biking has become an
integral part of my life because when I bike, I feel normal, most of my
symptoms disappear.
I returned to Chicago and Law School and started
feeling really bad again. I went to a
specialty Headache Clinic where I was prescribed pain medication for my
severe
headaches. Soon after, my roommate, the
same girl who was my roommate in Vail, found me in our apartment on the
floor
and took me to the ER. I had had a GI
bleed and yet another head injury. I was
hospitalized for a week and transfused.
Once again, I was medically unable to
complete the semester. I tried, but I
missed so much and was feeling so bad that I failed the semester. I explained to the school that I had been
hospitalized and was granted the opportunity to retake the semester. Further, under the Americans with Disabilities
Act, I was given a private room and extra time to take exams in the
future so
that I could get up and walk around or take my medication during the
exam.
After that year, my roommate said to me
that she noticed I was so much better in Colorado. I
agreed and shortly after, I took a leave of
absence and moved to Aspen to be a ski instructor! Life
was better there. I also became a bank teller,
but did not feel
good whenever I worked, so I quit. I
tried working in retail, but was fired from all of those jobs. It seemed that I was only able to function on
skis.
Just before I left Chicago, I met the man
of my dreams. My neighbor took me to a
party of her friends from medical school. There,
across the room was the cutest guy. Lucky
for me, my friend introduced us. We
fell in love and dated long distance. By
the end of the ski season, he needed to make his choice for residencies. We decided that he should go to University of
Chicago, and that I should return to Chicago to be with him.
I returned
to Law School. This time, I was doing things
differently. I commuted to school via
bike. I got an apartment along Lake Shore
Drive and
rode my bike to class. When the weather
was not appropriate for biking, I drove a car and parked by the meters
at Art
Institute and walked a few blocks to class. I
could not read comfortably, so I did not buy my
Law books. This time, I had friends in the
classes ahead
of me, and used their briefs on the cases assigned. I
always took out library books so that it
looked like I read the book. I figured,
let them fail me out, I had nothing to lose, but I was not going to
kill myself
over Law School. I was amazed, it
worked, I passed and graduated! I
graduated in August. I joke that I
graduated in the top 10 students of my law class; there were only 10
summer
graduates that year.
Studying for the Bar Exam I had another MdDS
episode. I took a bus to the Bar Review
course. After getting off the bus, the
sidewalk started moving on me. I was
diagnosed with viral labryinthinitis. I
could not read a thing without getting severely nauseous. Surprisingly,
using
my Americans with Disabilities Act, once again, I got a private room to
take
the exam with extra time. I passed the
Bar and became an unemployed lawyer.
There was no way I could work in the
condition I was in. By this time I was
married and my husband was looking to do a fellowship in Pennsylvania. We decided that it was a perfect time to
start a family. I became pregnant and
was delighted to find the migraine that I had for the past 10 years
finally
resolved and went away. I was normal
again, YEAH!!!
However, I had severe morning
sickness. I never vomited, but I was
always nauseous throughout my pregnancies. I was
so happy to be like everyone else, I did not
mind. In hindsight, I think it was motion
sickness
from MdDS and not morning sickness. However, at
that time, I did not know that. In order to move
from Chicago to
Pennsylvania, we drove a U-Haul truck cross-country. I
think the drive must have set off another
episode of MdDS.
Post partum, I was exhausted, but so glad
that the headaches didn’t return. I was
told every new mom is tired. My husband
was working long hours and I had no family near by.
I had 3 kids in 5 years, no wonder I was
tired. I was told that I tested positive
for Epstein Barr Virus and that I was just tired, nothing was wrong. However, I did not have the energy to even
unbuckle my baby from the car seat to take the preschooler into
preschool. I knew something was not right.
We decided to move back to Colorado. I
felt better biking in the sunshine and
going skiing until the next episode hit me. I
was skiing in a whiteout and got disoriented. I could not tell where
was up or down. I literally let my skis
go downhill with gravity but was completely disoriented. I
fell down, a rare event for me. I was told that
I had another head injury and
that my resulting dizziness was from the original bike accident 19
years
prior. The headaches were back. I
felt like I had viral labrynthinitis
again. For three years I went from
doctor to doctor, ENT to neurologist and audiologist, private practice
and to the
university, anyone who was willing to treat me. I
tried acupuncture and vestibular therapy. I
tried medications. Nothing
seemed to work. I was eventually told I had
Benign Positional
Vertigo and treated with the Epiley maneuver. I got better and then six
months
later it was back with a vengeance. Nothing
could cure me. I contacted an expert via email and had
my records looked at. I
finally was diagnosed with Migraine
Associated Vertigo. Some medicines
helped.
To celebrate my renewed health, my husband
and I went on a vacation without kids. Bad idea. I came home as a
disaster. For the next couple years, every
time I sort of felt better, we would travel and I would get worse. I was told that changing time zones affected
my migraines and eating habits, which is why I always felt worse. In hindsight, each time I travelled, I
triggered MdDS symptoms.
To celebrate my parents’ 50th
anniversary, my sisters and their husbands and children were all going
on a
cruise. I was nervous. I
did not think that would be a good venue
for me, yet I did not want my kids to miss the opportunity for this
memory. We went and I came home as sick as
ever. I called my doctor and was told the
good
news. Finally, now that I had been on a
cruise ship, I was easier to diagnose. I
had MdDS. It took me 23 years to figure
out what was wrong with me.
Now that I know what I have, life is a
little easier. I remind myself daily this is life altering not life
threatening. I have already altered my life and
figured
out what works somewhat. Being part of
this foundation made such an improvement in my life. Finding
others like me has been life changing
in a positive way. Now I feel like I
have some “rules” to follow and it is a little easier to
predict what is going
on with me. I have others to give me
advice so I can hope for remission.
MdDS
has shaped my adult life, it has had some surprisingly good benefits. My husband, children and myself are really
close to each other, something that I don’t think others without
illness or
adversity really enjoy. We love to ski
together and have fun doing it a lot. I exercise because that is the
only way I
feel good. I have probably avoided other
family illnesses such as diabetes and heart disease because I take good
care of
myself. I also get to enjoy every day on
my bike. If not for MdDS, I would
probably be a boring lawyer at work and not enjoying life with my kids
so
much. I have founds ways to benefit from
having MdDS, but I would not wish it on anyone and I hope for permanent
remission. It is scary to think that I
will be like this for the rest of my life.
Life is hard with MdDS. My balance is
completely based on my vision. When
something moves, I cannot tell if it is moving or if I am moving, kind
of like
when you see the car next to you move forward and you have the illusion
that
you are going backwards. I don’t like
going out at night or being in a car after dark because I have no
horizon to
balance me. Stores are very difficult for me because people are moving
around
and the items all seem to be flying around which causes me to get
extremely
dizzy. I find it hard to grocery shop or
buy clothes without help because I get so seasick shopping, so I
generally
avoid it. Walking is very dizzying so I
use REI trekking poles to stabilize myself when I take the dog for a
walk. I find most movies and television
uncomfortable to watch since it increases my symptoms. Computers
and most technology are too hard to
focus on. Background music in stores and
restaurants puts me over the edge because I get overestimulated. When I go to my kid's sporting events or
school plays, I get very motion sick from all the movement, so I
usually end up
looking at my feet instead. I avoid crowds and noise as best I can. I always carry with me sunglasses, earplugs
and emergency medicine so that I can block some of life’s normal
stimulation.
However, with every hardship, I remember this is life altering not life
threatening and there are solutions. I
just have to do things differently.
I wake up in the morning and stumble like
a drunk out of bed. I feel dizzy and fuzzy
unless I am biking or in motion. When I
walk the dog, I like company to distract me from the feeling that I am
walking
on a swinging rope suspension bridge. I feel lightheaded most of the
time. Imagine going on the worst amusement park
ride and being asked physics or difficult math problems, this is what it feels like for me to just remember
my birth date. My husband talks to me
and all I am thinking is “I am not moving but I feel like I
am”; I try to
concentrate on his forehead to balance and look like I am listening. I feel like a can of coke that has been
shaken up and is about to explode and needs to sit still to settle. However, sitting in a chair feels like a
spinning teacup ride at Disney.
I have probably spent millions of dollars
on my health care for this illness. I
have had 3 knee surgeries because I can’t balance I wobble, which
causes wear,
and tear on my joints. I have had numerous MRI’s, CAT scans and
tests. I go to
lots of doctor’s visits. I have had lots of physical therapy. For
example, I
fell down stairs and tore my rotator cuff. I
have had unneeded eye exams to see if that is why I am dizzy, but I
still have 20/20 vision. I experimented
multiple times on alternative medicine such as acupuncture and vitamin
supplements. I keep trialing different
medications. I keep trying vestibular therapy.
My health
care costs continue to escalate.
I find it amazing that we can send
astronauts up to the moon, have paying passengers on orbit trips around
the
world and instant messages via
computer, yet no one knows why my brain and others like me have this
phantom
motion that goes away when I am in motion. I
hope that people will hear my story so that doctors will be able to
diagnose all the people out there with this mystery disease. I suspect
there
are lots of people like me out there undiagnosed. I
wish I had saved every dollar spent on my
medical costs and spent them on research for preventive care. I dream that I can get people organized
together to STOP
THE ROCK AND JOIN THE WALK.
Two friends that I have met from this
foundation are joining me in organizing the WALK
for MdDS (1st Annual Rock'N Stroll for MdDS)
on October 16, 2011 in
Denver. I hope that people will read
this story and join us physically or financially and support the walk
to raise awareness
and money so that there can be research to find out what causes this
illness.
Once we have money for research, we will hopefully find a treatment.
I am a very happy stay at home mom and
love my family and life. I am so grateful to finally know what is wrong
with me
and to learn how to live with it. I
realize that everyone has their own baggage it really is what you do
with
it. As my son said to me once, “Mom, you
are so lucky to have MdDS, you get to go on roller coaster rides and
boat trips
while staying at home, all I get is boring land. It
just goes to show you that everything is
in the eye of the beholder.
Karen
