Tourette
Syndrome Life Stories
Story No.'s 46-50
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Stories
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Story
No. 46
"The
Sky Opened Up . . . . I Was Not Alone!"
I'm another of those who
was never properly diagnosed until I was in my
20's. However, all my life the one, pervading
thought I was plagued with was the knowledge
that something was "wrong" with me.
That I was different from the other kids and
didn't know why. One of my earliest memories is
standing in my crib, starting at spot on the
wall and screaming "fly!" at the top
of my lungs. I was obsessively horrified of
bugs, and physically oversensitive to the point
where I could not stand the texture of anything
crunchy in my mouth, could only take lukewarm
baths, and my poor mom had to fight a major war
to comb my hair! On the positive side, I
developed language skills early, reading
third-grade level by kindergarten, college level
by 5th grade. I loved to engage adults in
conversation. In the early years, my
preciousness often acted as a buffer between me
and my teachers, helping them to overlook my
other, stranger behaviors.
O/C behavior started when
I was five. I would pick up my food and hold it
in both hands - going through a careful ritual
before I could eat, which included sniffing,
biting a particular corner, sometimes re-shaping
(bread) or totally squishing (cake) before it
could be eaten. I began to invent complex
bathing and bedtime rituals which *had* to be
done before I could end my day. In all of these,
my mother was infinitely patient. (My father had
left us when I was still an infant). By the time
I was ten, I'd developed tics, constant
blinking,. grunting, grimacing, and chewing the
inside of my mouth and lips until painful sores
formed. It had gotten to the point where even my
teachers were at their wits end. I was taken to
several doctors and specialists, one who decided
I had small pocs(!!) and gave me monthly small
pocs shots for two years. When that produced no
changes, we tried a psychiatrist who talked to
me for ten minutes every two weeks for a month,
and decided my real problem was
"nervousness" due to the fact that I
had no father figure. My mother was advised to
go out and find one as soon as possible! She
declined that advice and decided to just accept
me as I was.
My peers, however, were
not nearly as accommodating. I was the spectacle
of my school. Children of all ages would follow
me around, starting, waiting to see what bizarre
thing I would do next before competing with each
other to mimic it the most accurately. Calls of,
"Hey, girl! Girl!" plagued me wherever
I went, as kids would try to get me to witness
my mockery. It got to the point where any
laughter I heard started my stomach churning,
even if it wasn't directed at me. I became
withdrawn, living in a world of books and
hobbies, shunning school until truant officers
would come hunting for me and make me return.
Then... a miracle
occurred. When I was twelve, the tics started to
subside.... then vanished! I started a new
school in a different neighborhood and
discovered for the first time in my life what it
was like to have friends and belong to a peer
group, even though I constantly battled intense
self-consciousness, always afraid others would
discover the "truth" about me and the
cycle of rejection and hurt would start all
over.
When I graduated high
school and got my first real job, a strange
thing started happening. I found that if I
turned left to go around a corner, I *had* to
turn right to "correct" it. Then I
started developing a powerful urge to say the
same thing over and over to myself or something
terrible would surely happen. The O/C had
returned with a vengeance, though I didn't have
a name for it at the time. I fought like the
devil to keep these things as hidden as I could
and somehow managed not to attract undue
attention, though I did become withdrawn after
awhile. Then, after about two years, this too
faded slowly away.
Finally, when I was around
25, I happened upon a pamphlet about TS someone
had left lying around. As I read it, it was as
if the entire sky had opened up and pulled me up
and away. My entire life explained by a simple
disorder -- one that other people actually
SHARED with me! I was *not* alone!
Today, I am 33 and only
experience relatively "minor" tics,
most of them internal. It's hard sometimes to
keep my mind quiet, it likes to repeat stuff a
lot! Listening to music softly in the background
helps me considerably with that. I have a
wonderful job and great friends, only a few of
who know I have TS and only because I told them.
My love of reading has become a love of writing
as well, which give me great pleasure. Also, I
have discovered that hiding underneath my
trauma-induced shyness (which endured even into
my late 20's) I have an actual *personality*
complete with a sense of humor and love of fun,
and now enjoy life in a way I don't believe I
ever could have if I had a "normal"
childhood.
Recently, my six-year-old
nephew has been also diagnosed with TS. I'm so
happy that he'll never have to go through the
years of ignorance (my own and other's) that I
did! The knowledge and options available to him
are much greater than I could have ever dreamed
of most of my life.
Story
No. 47
"I
Wouldn't Trade Them for Anything!"
My oldest son, Sean, has
Tourette's and ADHD. He first developed
tics at
about 5 and was diagnosed with ADHD at almost
7.
His first tic was "heavy" eye
blinking. After that came the nose
wiggling and nose and mouth stretching.
These have now all combined into an eye-rolling,
face and mouth stretching tic. This is
very distracting to Sean during school. He
also circles his thumbs and wrists, and has
recently started shoulder shrugging.
He developed vocal tics at about 10. These
include coughing, throat clearing, and
snorting. There was a girl who rode the
bus with him this year who called him "snot
boy" because of the snorting.
Thankfully, this is about the only teasing he
has encountered so far. However, when he
told her he has Tourette's, she was falling all
over herself apologizing. It seems she has
a friend with a brother who has Tourette's, but
didn't realize that there are all different
types of tics. Another person
educated!
As is common with many of
these children, Sean is very intelligent.
He is in advanced math and has always read above
his grade level. He does have problems
with organization and quite a bit of trouble
with writing. These are major efforts for
him. Fortunately, his school is some
help. He does not fall into the Special
Education because of his academics, but they
have put him in a resource room every other day
for one period. Here, the special
education teacher helps him track assignments
and allows him to work on the computer. He
also has modifications in place in all of his
classes to give him extra time for writing
assignments, shortened writing assignments and
access to computers or word processors when
available. He has managed to make Honor
Roll the first three quarters this year.
Sean takes Adderall for the ADHD and Haloperidol
(Haldol) for Tourette's.
Our 10 year-old son, Ryan, also has ADHD, as
well as ODD, OCD, and now the
doctors suspect Tourette's. Our 7 year-old
son, Tyler has ADHD. My husband
also has ADHD, but we can't find Tourette's in
either family. The only child spared (so
far-crossing fingers) is my 4 year-old daughter,
Bria.
As you can see, life is very interesting at our
house. But I wouldn't trade them for
anything (most days)!
Story
No. 48
"You
Will Name Hime Joshua, and He Will Make You
Proud"
I have always been a smart
kid; but now that I think about my life, I
realize that my finest achievement has nothing
to do with academic accomplishment. As a
person afflicted with Tourette's Syndrome (TS)
and associated learning disabilities - ADHD, for
example - I have had many obstacles to overcome.
Young boys with TS are a
handful, and I was the poster-child of that
fact. I was born mischievous. In
fact, the nurse who handed me to my mother to
hold for the first time said to her, "Keep
your eye on him. He's gonna be a
handful." I never ceased to disprove
that nurse. I don't think my mother knew
exactly what was in store for her when she took
me home from the hospital - and this is where
the real story begins.
I recall a story my mother
told me about a trip to the supermarket. Every
child has some toy that he or she holds dear to
them - a teddy bear, a GI Joe, you get the idea
- and mine happened to be a set of Fisher Price
keys. As my mother pushed me in the cart
down the isle at the supermarket, we approached
another mom doing the same with her son. For
some reason, the shopping carts were stopped
next to each other and the kid in the shopping
cart next to me grabbed for my keys. I
didn't like that at all. Those were my
keys. So I politely yelled to the nice
boy, "Get your God damn hands off my f***ing
keys!" just like every
good boy would do, because I wanted to make my
mom proud.
She was so
embarrassed. You have to understand my
mother. She is the type of person that
always makes her best effort to please everyone
all the time and remain in excellent standing
among neighbors. She is a very caring and
compassionate person as well. So you can
understand how much I must have embarrassed
her. Needless to say, the embarrassment
did not stop there. That brings to mind
the day a neighbor moved in next
door:
I proudly walked up to the
door and rang the bell, and when my new neighbor
answered the door, I looked up at him (I was
six, mind you) and said, "Hi, I'm Josh, and
you're a f***ing a**hole." What a
polite young man, he must have been
thinking. I also remember the airplane
trip: I decided to celebrate my first ride
on an airplane by tearing my mother's blouse
off. It so happens that she was lacking a
bra that day, and she did not find my method of
celebration that amusing. It was antics
like those that lead my mother down the path to
a nervous breakdown.
One day, she called
a child abuse hotline saying she wanted to kill
me. I think that was the day I tore the
couch cushions up on the roof to make snow. By
the time adolescence rolled around I had
developed some new interests: I liked to
fight, and I liked to play with fire. Upon
my being expelled from the local junior high, my
parents realized that the family needed a fresh
start; so we moved to a small community just
twenty minutes away.
I lasted about a month and
a half at the new junior high. About two
weeks in, I started getting into a lot of
fights. I wasn't a bully or anything, I
just found myself in very bad and uncompromising
situations. Over the next three weeks, I
got in about six fights and was suspended four
times. The staff was so concerned about me
that they had a psychologist speak to me.
I didn't like her very much so I told her that
"I was planning to kill my parents,
dismember their bodies, and live off of the
insurance money," just
to get a reaction out of her.
And get a reaction I
did: She called my parents immediately and
told them to leave the house. To this day,
I cannot believe she took me seriously.
About a week later, my poor mother caught me
running down the street with a gas can and
matches. Later that night the family took
me for a pleasant ride to a mental
hospital. They said that they loved me
very much and that this was for my own
good. I spent the next six months of my
life and my twelfth birthday in that
place.
The purpose of my
going into the hospital was to control my temper
and TS with medication and discipline, and to
educate me. I always loved to learn.
That was the one thing I really liked. My
mother tells me that as soon as I learned to
read, my head was in her medical books.
During my six months at the hospital, I found
that I was really good at mathematics. As
I look back, I realize how much that hospital
helped me. I not only learned some math,
but I learned to focus as well. I left
that hospital a totally different person.
I am fortunate that I have such excellent
parents. They care about me a great deal,
and I am certain that if they failed to take
that one step, I would be dead today.
My high school
years, in my opinion, were wasted years. I
skated through the scholastic aspect of high
school, but I never made many friends. In
fact, I do not think I made a single friend by
that word's definition. I think that
aspect of high school is very important in
shaping an individual in American culture.
So, I think that I missed out on a lot; but on
the other hand, I never got in trouble, and
never
got in any fights. I also began to receive
some decent grades. That was just about
the time that my parents began to tell me how
proud they had become of me. Those were
very pleasing words to hear. I had always
felt like a burden to them, and it has a lot to
do with the story I am about to tell you.
At an early age I was curious
about the origin of my name. So I asked my
mom why I was named Joshua, and this is what she
told me: Before I became pregnant with
you, I had a dream. And in this dream God
came to me and said to me, "You will bear a
son. You will name him Joshua, and he will
make you proud." My mother was, and
is, a very devout Christian, so she most
assuredly took that dream seriously. Can
you imagine how she must have felt during my
first twelve years? Do you think that
maybe she was ready to give up? Do you
think that maybe she began to doubt her
faith? Surprisingly, the answer is
no. Those
thoughts had never entered her mind. The
only thoughts she had were ones to the effect
of, "When Lord? When will he make me
proud?"
As I progressed through
high school, my mother met some interesting
people. One of which referred her to a
woman who happened to work for the Department of
Rehabilitation. A meeting was set up to
speak with her about my aspirations to become a
doctor. I was set up with a vocational
scholarship in the area of computer science -
strangely enough - and even though I was not
interested in that field, I took it anyway
thinking that I could always change majors down
the road. At least they were paying for my
general education. Another benefit was
that my parents could not afford to send me to
college, and I needed to be in school to
continue receiving benefits from my parents'
medical insurance carrier to pay for the
extraordinarily expensive medication that they
also could not afford.
In order to stabilize my
TS, the doctors had put me on a regimen of very
expensive dopamine controlling drugs that I was
still taking four years later. So this was
a win-win situation, I suppose. I find it
an amusing paradox that my TS was an obstacle,
but also an asset. It held me back in my
early years-and my
family was ostracized because of it-but without
it, I might have never been the first member of
my entire ancestry to attend college. In
that regard, I am exceptionally proud of myself,
as well are the members of my family. But
prouder yet was the day I no longer needed
medication for my Tourette's Syndrome. For
the first time in my life, I felt normal.
That was such a big deal.
The next semester in
school produced my next greatest
accomplishment: I received a 4.0 GPA for
the first time. I could not believe
it. I felt as though I had won the
lottery. I think that was the true beginning of
my life. Since then, my focus has narrowed
to the field of biochemistry and the physics of
physiology. I have always been a
perfectionist. I have always dreamed on
the large scale, and I know that I can do what
ever I set my mind to.
And as big of an
achievement as any of the things I have
discussed, none of them are my finest
achievements. My greatest is yet to
come. I will not rest until I have
received the Nobel Prize. That is my goal.
Well, that and the accompaniment of my face on
the cover of Scientific American. Nothing
less will please me. I have always strived
for excellence. Although my grades often
fail to communicate my potential, I know what I
am capable of. But that knowledge is
useless unless I have the means to achieve my
goal. I need a vehicle to propel myself
toward greatness, and nothing short of a degree
from a UC university will get me there faster.
Thanks for
letting me share this story,
Joshua
Story
No. 49
"Don't
Try Eating the Patch <grin>"
I've
had TS all my life. I had it really bad when I
was growing up; swear tics and racial slurs
included. My parents were really understanding
and helped me out the best they could. I don't
have time to tell you everything about what I
have experienced, but I will tell you anything
you want to know.
My TS started getting better during my High
School years to the point that people wouldn't
know I had it unless I told them. They were good
enough for me to go on a 2 year full-time
mission for the LDS Church when I was 19. When I
got home from my mission, I dated a while and
finally got married in May of '98. My wife and I
just built a house in Mesa, Arizona and we have
a baby girl due this month. I work for a major
Fire/Ambulance Company as a Computer Network
Engineer, and my wife stays home.
My tics just started to act up again in the past
few months. Swearing tics and racial slurs.
Barking, clearing my throat, etc.... It's pretty
bad right now, but my family and people at my
work are very understanding about it. The
biggest problem right now is the racial slurs in
public; trying to control them, and then feeling
all tense after. It makes it hard to even go to
the store, out to eat, on a date, or any place
in public. I am taking the Clonodine patch for
my medication, but it doesn't taste very good,
and it's hard to chew. (Just
kidding!). Actually the patch isn't
working at all for me. I don't know what else to
do now. I've tried Haldol when I was younger,
and it put me to sleep in class and made me gain
lots of weight. If you know of a GOOD TS
Specialist in Arizona, let me know.
Sincerely,
JB
Story
No. 50
"Why
Did God Choose Me?"
Hi. I'm Stefanie. I live in Southbury
Connecticut and am 16 years old. I was
diagnosed in 4th grade while I lived in
Iowa. I have many symptoms of tourette's
along with OCD. I blink my eyes, twitch my
nose and screech. I also make bird
sounds. I've had a hard time in
school. In 6th grade I failed almost every
class and had a hard time with kids. When
I was in 7th grade I got harrased by about 15
people. They called me names and started
to imitate me. This made me very
sad.
This
was also the year that I told my classmates
about my disorder. Hoping they would
understand. 8th grade was better.
This was the year of my big move. I moved
from Davenport, Iowa to Southbury,
Connecticut. In my new school, I didn't
fit in. I was like an outcast. I
didn't make many friends and when I did after a
while they started to be mean to me. A few
weeks later. I met a wonderful girl named
Angela. We have been best friends ever
since.
Now
I was in high school. 9th grade wasn't as
bad. It was actually pretty good.
10th grade got worse. In the fall someone
(I have no idea who it is) Stuck a piece of tape
on me that said F****** B****. When I
found it I was so upset that I
started to cry. I had no idea how long I
was wearing it, or who did it. Then in the
spring two boys heard me screeching in the
library. They started laughing and making
fun of me. I finally left feeling really
bad. Then I got depressed. and
started to go to a program to fix it. I
feel better now and I am going to leave the
program in a week.
My
brothers and my sister never seem to understand
me. All they do is yell at me to stop my
noises and movements and that it is
annoying. My mom tries to tell them to
stop, but they never seem to.
Two months a go I wrote a poem that I would like
to share with you.
Tourette
Syndrome
I'm
ready now,
To let loose,
All my feelings,
Towards my Tourettes.
Which is a disorder,
Where you can't help,
All the things,
You do and say.
My face may move,
Quiver and sigh.
But I am normal.
You must listen,
To all of my thoughts.
Don't mention my noises,
Or my movements.
For I might think,
You are making fun,
Of the things I do.
My siblings hate my disorder.
Maybe I do too.
But I learned to accept,
The way I am.
I feels good,
To let my feelings out,
For I feel sad all the time.
I sit in my house,
And wonder why,
God chose me,
To be so unique,
And so different.
Poem written by
Stefanie - Southbury, Connecticut
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