Non-Fiction

Living with Tourette syndrome

by Helen Cossaro

Tourette syndrome is a neurological disorder. Some of my TS symptoms are
involuntary tics/tremors/body jerks/shaking (to name a few). It can be
annoying as well as physically draining to the person who has tourettes.
I've had my share of shame, depression and no self-esteem. It's hard enough
being unable to control the body and dealing with this disorder every day is
difficult; but I will try my best to explain Tourette syndrome. "It's like
waking up all of a sudden and finding myself in a really fast paced race, I
m automatically in this race and its non stop. How I wish I could make this
entire condition stop. I would love for my body to be calm however, to this
day, that's just been a dream.

To start off, I really wish I could have met people with tourettes from the
time I was a child. I remember seeing a lady on a city bus; and she
displayed the same symptoms and even more 'worst'. Somehow I knew that's
what I would be like when I became an adult. I regret that I didn't
approach her, but I didn't know how to, so I just stayed in my seat. Who
knows, we could have become friends. Instead this is how I found out that I
was different. I was walking around my neighbor-hood and I ran into a girl
We started talking and in just a short time she started asking me
questions…

Her: "What's wrong with you?" "Why do you do that?"

Me: What do you mean?

Her: "Don't tell me you don't know what you're doing?

Me: What am I doing?

Her: "Why do you do that with your face? Moving your lips, twitching your
eyes and shaking"

Me: Doesn't everyone do that?

Her: "No way, something's wrong with you. You should get checked by a doctor
or something"

As we went our separate ways, I felt pain inside even though it was such an
eye opener; nobody had given me so much information about myself. My life
was dramatically changed, at this point. All of a sudden words came
crashing into my brain "Helen stop doing that" "Oh if I just hadn't laughed
at your aunt" etc. Suddenly I was aware of how I was different! I began to
understand the reason why my family would say at the dinner table "stop
doing that" etc. Oh how I desperately needed to hide and fast. But I had a
problem, mom didn't want me in the apartment but I couldn't bear to be out
in public for another minute. I felt like millions of eyes were staring
with total disgust at me. When I got home I opened the door very quietly,
and walked carefully up the stairs. I was shaking like a leaf, and so afraid
that mom would see me and send me right back outside. I could feel tears of
fear starting to sting my eyes; all I needed was to hide in my room. I
stood by my window, just wanting to die and die and die.

Once my mom noticed I was in my room she asked why I wasn't outside, I
answered, "I really just want to stay in my room". How I wish we could
have talked about it; like - why was I different? I had questions deep
inside that wouldn't surface for years. I was unable to initiate a
conversation with my mom. I was an emotional and physical wreck from that
day on.

Mom repeatedly told me that God had punished her for laughing at an Aunt who
had the same symptoms while she was pregnant for me. So Mom did something
wrong and God is punishing me? After all I was the one with the nervous
body. I was the one that suffered from the effects; sore neck, unable to
stop my eyes from opening and closing, made my eyes lids uncomfortable time
and time again. If Mom had done some thing wrong why didn't God give her
the Tourettes?

Each day I began to notice other things about myself. I wasn't as bright
as the other kids in my class. I was alert walking to school, arriving at
school and sitting down in my seat. From there, it was a constant struggle
that I couldn't hide my TS symptoms so I sat consumed to the max with
constant shame and fear, my head was filled with fogginess. I could hear
the teacher asking questions and kids raising their hand. I just didn't
understand why we had to learn. I failed school with flying colors. I
passed a math test 'once' and that was only because the teacher had made a
mistake while checking it.

My mom was felt very uneasy when I was around her. To make things worst I
was a bedwetter right up until I turned eleven 'my monthly' begun. (For a
short period of time I didn't wet the bed and that was when I had a 2nd hand
couch to sleep on instead of a mattress 'I think I was around 9 or 10 years
old.) I hated being a burden to my Mom, but I didn't know how to put it in
words.

No one saw how tense the inside of my neck and shoulders were. There was no
comfort and I wasn't able to talk about it. No one knew or understood about
the discomfort I felt especially by bedtime each night. Each night I went
to bed I would say in my head, don't wet the bed. I would dream that I'm
in the bathroom and would be so glad that I had made it, only to wake up to
another wed bed.

(((Why))):

Probably the hardest thing about going through hard times is all the
questions that are left unanswered. I have suffered a lot of strain with
some family, of course that can only be expected with the lack of
information on Tourette syndrome, in the 1950's and 1960's even as far up as
the 1990's this neurological disorder was not known about. I hated myself
when I was a child. I didn't have much of a life during my teenage years.
I usually felt safe in my bedroom where no one could see me!

But even in the privacy of my bedroom I was overwhelmed with depression,
guilt, low self-esteem, for being different and this left me feeling
abandoned by the whole world. I didn't fit in, anywhere!

I started attending Church services when I was in my late 20's. Healing from
God was often taught. I also deeply believed that God was willing and able
to heal. I knew in my heart that God had healed me from a lot of the
emotional pain caused by being rejected. However, I still had tourettes! I
had always been singled out as a child at home, school, neighborhood, stores
Now I was even 'different' in the Church circle. I have been questioned
and challenged about my disorder many times. This always crushed me and left
me feeling tormented. Believe me, I wanted to get healed! However, after
many efforts such as praying, going forward for prayer, fasting, I still had
tourettes. How I hated myself, and I was mad at God for not healing me. I
would go home and beg and plead with God to take this horrible ugliness away
from me. He would say "My Grace Is Sufficient For Thee". My Peace came
when I chose to trust Him in spite of my tourettes. Well meaning people
would approach me from time to time with comments such as these:

- I know God can heal you, and He will in His time.

- If you trusted in God more, you wouldn't do that!

- God wants to heal you, but your interfering with the healing.

- You're seeking attention or maybe you just want people to feel sorry for
you!

These comments made me feel devastated. I would go home always feeling
defeated as a Christian. I was terrified at the thought of standing before
God. I imagined that when I stood before God that He would say, "Well, why
didn't you let me heal you", "Why didn't you accept my healing?" This would
really leave me feeling tormented. I was robbed by my Tourette condition
all during my childhood. Even now it was still affecting me. Everyone
wanted me to be 'healed'. I had to learn to be a God Pleaser and not a
people pleaser.

When I was younger I enjoyed walking around in stores. Wasn't too long
before I realized that I was being followed. Back then if a person looked
'nervous' they thought the person was about to steal. That insulted me. I
have and continue to receive medical and spiritual help.

Need to talk? Want some answers? 'Christians with Tourettes Group'. CW_TS@yahoogroups.com; www.paul.tourette.info (very informative)

This piece was sent to us by 12 year old Ty Rhode. It was written in December, 2000. Email Ty

Trying to Explain Tourettes Syndrome to Someone Who Doesn't Have It

Did you ever have your leg fall asleep and it feels like it isn't part of your body, then it starts to tingle, then hurt? You move around wildly so it can get the feeling back into it and start to feel better. At the time you probably don't care what it looks like, you want the feeling back in your leg.

In a mild way that is what ticking is like. The wild moving uncontrollably to make something feel better, feel right.

Did you ever have an itch but couldn't reach it? Doesn't that drive you nuts? Did you ever know you were going to sneeze but had to be quiet so you muffled it? Doesn't that make the inside of your head feel like it is going to explode? Did you ever have a muscle cramp that you know that if you stretch it then it will feel better, but know that to stretch it it's going to hurt? Did it ever feel like someone was staring at you, or maybe they really were? Doesn't that make you feel relief when they quit staring?

All of those things are what it is like, every day, living with TS. Sometimes every hour, every minute. The relief you feel when you finally can reach that itch, finally sneeze, stretch that cramp and know you aren't being stared at is how it feels when you can finally tic after surpressing it all day long in school or church.

Did you ever get a song stuck in your head and start humming it or even singing it out loud? No matter what you do that silly song is in your mind. Sometimes you can't remember all the words but when you finally remember it you say it out loud, knowing it is right?

That saying something out loud, even mumbled, is almost what it is like when one of the tics is saying a word over and over. It gets stuck in your mind and comes out of your mouth without even thinking about it.

To me this is normal. My normal. Not everyone else's, but mine. They say when someone loses a hand or a foot they still feel it sometimes and wish for it back. But for the person born without a hand or foot they just learn to adapt and don't have a sense of loss. Well having TS is like being born without that hand or foot. You don't know to miss being normal, you never were that in the first place.

Sheryl L. Knapp of Castle Rock, CO sent this piece about her daughter Danielle. It was orignally published in Heavenly Thoughts, in 1995. Email Sheryl

I truly believe God works in our lives and gives us the answers if we just take a minute to listen. We ask and plead for things to get better or for things we think we need. He shows us how to get through hard times and provides us with what we truly need. This is what I've had to learn the hard way. If I only sit quietly and listen, I'll find the answers to the questions I've asked Him. Sometimes it has taken me years to listen. Since I've asked Him to take over the steering wheel in my life, I've received a number of answers and a whole lot of blessings.

My reaction when my daughter started her "twitches" (as we call them) the summer of 1994 was that she was having a nervous breakdown. I have been told that we've been through a lot. However, I believe God was just preparing me for the responsibility of what my real work in life is: first, to thank God and be his servant and do what I can for what He calls me to do. Second, to raise this precious gift He's given me, my daughter, Danielle. It has been quite a challenge to take care of a child who has Tourette Syndrome, but He reminds me in gentle ways (like in her sense of humor and in the sound of her laughter) that He blessed me with this special gift.

Our family--my brothers, mother and I, had been on shaky ground for a few months and Danielle had been innocently caught in the middle as most children often are. I felt she was responding to the pressures of living in a new neighborhood and going to a new school, not to mention her witnessing an attack I suffered early in 1993, some of our family members moved away and she went through three schools in kindergarten. Through the months after we moved yet again, we lived in fear and needed time to heal. By the grace of God, we were able to get into an apartment in a small town. Danielle was able to finally go outside to play and I learned to adjust to believing she would be all right playing outside. It took me about a year before I got up enough courage to go back to church.

One silent friend I've had (though I never met her) for about seven years is Amy Grant. Jesus has tried to get through to me in many ways but He finally succeeded through her music. The first time was when I listening to "Love will Find a Way" this song helped me to know Jesus still loved me and that gave me enough courage to leave my abusive husband. Now I was listening to her then new album, Heart in Motion. Music has had a significant influence in my life and now her music was reminding me it had been 12 years since I went to church. So, on Easter Sunday, 1994, I dressed up my daughter and went to a small white church on the corner of our street.

The people in the church were supportive, caring and their guidance helped us through the hard times we were facing. That's when Danielle's symptoms seemed to start all-at-once: she began to "sniff" (outwardly) or hop in place repeatedly for no apparent reason and soon to shrug her left shoulder over and over. I was struck dumb. I didn't know what was happening to her nor what emotions she was going through. When I would ask she would look up at me pleadingly for an explanation and I wouldn't know what to tell her. Sometimes I thought she was doing these things to embarrass me.

She also would be embarrassed in front of the new friends she was trying to make and as a result, she would run into her room and stay inside our house most of the time. The neighborhood children would tease her because they didn't understand what she was doing.

I was determined to stop any and all stress she could have been receiving from my family or any neighbors; even if that meant keeping her in the house and all to myself. I felt both fearful and embarrassed when she would start this in public. I would also sharpen my tongue on anyone who would dare say anything about her condition or tease her in any way.

However, instead of poking fun at my kid, most of my neighbors asked questions and gave suggestions on what was happening to my little girl. They were supportive and on one warm night while two of my neighbors, Patty, Shari and I sat on our front porches in our apartment complex, Patty told me about Tourette Syndrome. My heart fell to the bottom of my stomach. I tried to keep my composure, "Oh . . . , well, no . . . , I'm fine, really . . . Um, she'll be all right," was my stammered response. She said I should have it checked out. The truth was that the fact of it being a possibility scared me. To give this action a name sounded more like a death sentence than a passing phase. They talked and she told me of other things that could be wrong, but all I could feel was the warm summer breeze starting to get colder. It wasn't long before I excused myself from our little group and retreated inside.

The following week, our crisis counselor suggested Danielle see a neurologist and that he could help her. "Neurologist?!" I thought all this sounded terminal. I wanted it to be over and to have my normal little energetic, bright, intelligent, fun-loving, advantageous, good-to-the-core little girl back; the little one who I had made my best friend. I would watch her at the dinner table while she sniffed so hard and repetitively and shrugged her shoulder so much that she could not get the food to her mouth until she could slow down a bit. The food in my mouth would just stay in my throat.

It took me along time to get past my pride to get down on my knees and ask God to help us through this new journey. We went through the violence of my marriage, the nasty divorce and the domestic violence within my own family and now, yet another road to go down. I believed that she was only going through a passing phase and that it was a result of the violence she had seen me go through with the changes in our life. That it would stop if I tried to keep my family from talking about what happened or getting upset in front of her. God had found us a beautiful and safe place to live and, at times, I thought that we had been through all the hard parts. However, I have found I still have a lot to learn and to take nothing, not even the wacky weather in Colorado, for granted. I've learned a lot through the Scriptures and one of my favorite passages is Psalm 4:8.

When Danielle started the first grade, I received a note from Danielle's teacher requesting my presence at a "staffing meeting at the school concerning [my] daughter." Oh, great, now what? I thought. I remembered my mother's voice of experience telling me about what she went through with teachers and the school's staff (as well as anybody in the medical profession) concerning her children: "oh, the fights I had to put up with." And "You're going to go through the same thing," she would say, and her voice hounded in my mind as I sat in the "hot seat" at the meeting.

"She's really doing better," one staff member started in. I felt like I was surrounded by a flock of vultures ready to pick my eyes out and my daughter apart like the staff did when she was in preschool. During those meetings (or inquisitions) the child care givers there had a strange sense of what was normal and that my kid was not. "She's doing fine," they would say, then they would slam me with "but she's a little slow." We would go a few rounds after that but the meeting would always end the same: they would insist my daughter wasn't up to their standards and I would deem them incompetent. Then I would leave in a huff and they would still pick out anything she was doing "wrong."

"She has been making good academic progress in her reading and writing skills . . . developing at a good rate," one teacher remarked, bringing me back to the inquisition at hand. They all seemed a little more nervous than I was. "She has overall cognitive functioning within the average range, but" THERE'S THAT WORD, I KNEW THEY WOULD START IN, "Danielle appears to have significant need for attention and connection; however, she lacks skills for meeting these needs appropriately." In laymen's terms, "she has difficulty controlling her emotions and behavior."

They circled around me with this concern and that. I countered with that and this but when it was all over, I realized as did they, that Danielle needed help with her problem and that I had a team of people working with me to do what needed to be done. And that I was a good mother and they weren't a flock of vultures. And, above all, my little girl was not slow! In fact, she has proven, through testing and encouragement, to be quite the opposite.

After a visit to our counselor we had been seeing for Danielle's emotional stress, she gave me the name of a neurologist. Our visit with her neurologist went better then I expected and I could tell that the man knew his business. Besides the plaques on the walls from Harvard Medical School and other prestigious places, Dr. Richard Finkel asked me questions about home life and how things were with both Danielle's actions and with me being a single mother. Through a knot in my throat and well-hidden tears, I told him how hard it is dealing with her hyperactivity and now her "twitches." I said I didn't know how to help her.

In short, I told him how I was doing everything wrong. He seemed to understand everything we had been going through. He had heard all of this before and he knew that single mothers could have it extremely hard. He did conclude and diagnose Danielle with Tourette Syndrome, it's for life, that there is no known cure, but he told me there is hope.

To my surprise, I found out that there aren't too many two-parented families that can handle a hyperactive bundle-of-joy, either. Tourette Syndrome is a life sentence, so to speak, so she can have it for the rest of her life. On the other hand, her symptoms can get better. Researchers are still working on the answers dealing with Tourette Syndrome.

Tourette Syndrome is defined (in laymen's terms) as a genetic neurological disorder (so it's hereditary) that causes involuntary muscular or vocal movements. It is a chemical imbalance in the brain that tells the body to act in a certain way. There is an overload of this chemical, called dopamine, so the body acts differently than what it's being told and in an uncontrollable way. I have been told it's like having a mosquito bite or the hiccups. One just can't help but to relieve that "itch" or hiccup. But you try explaining all this to another person at the checkout counter at the local supermarket when your kid is cooing all over her baby. Some of the tics are blinking, sniffing, shrugging a shoulder, hopping, and in my little girl's case, also giggling so hard she couldn't breathe. They can be controlled to some small degree but the impulse is too strenuous to keep under control and suppressing it can make things worse. To help Danielle emotionally, I puled out all of her stuffed bunnies, toys and books on rabbits and pictures of other little friends that hopped like her. This helped her not to feel so alone nor too different. We also attended the picnic on National Tourette Syndrome Awareness Day on July 15 of that year and she met other children like her. It was very helpful to both of us.

According to Children with Tourette Syndrome: A Parent's Guide, edited by Tracy Haerle, Woodbine House, 1992 (page 2) "symptoms can begin before the age of twenty-one, but most often around the age of seven." Most start about the age of three to nine years (as in my daughter's case, the age of seven) or they may show up later in life, but only rarely. These symptoms can start to appear slowly or when stress levels are high like if the person is going through a family crisis. The tics get more prevalent when the person is under a lot of stress or are very excited.

There is medication (called neuroleptic) to help her stop the "tics," but the bad news is that the medication for her tics can have side effects. However, they are given in very low doses and do help Touretters lead somewhat normal lives. The side effects can include hyperactivity or drowsiness. Furthermore, lack of concentration and attention as well as comprehension and a change in appetite are considered among other side effects that can be more sever, such as vomiting or convulsions, to name just a few.

Not all medications do these things but the scary part is that we have to test them out to see if they will help or not. It was a long time before I wanted to consider medication for my child, but after she couldn't concentrate and couldn't feed herself very well (she was about 44 pounds for almost a year), I knew this would be the answer. After we started using the medication, she was sleepy most of the time and that worried me so Dr. Finkel lowered the dose.

It is true that these "side effects" may cause troubles in some children but in my child, to some degree, they were a blessing. Danielle was hyper in every sense of the word, so the drowsiness caused by ORAP, her medication (some use Haldol or Catapres) helped her get to sleep at night and didn't cause too much trouble after we lowered the dosage. She did have a lack of attention but this medication helped increase her attention span; instead, by calming the hyperactivity in her mind. And before she could hardly eat, so the effect to this was another plus. She then gained more weight. NOTE: I have found out that ORAP can cause a more serious side effect called Tardive Dyskinesia which is flicking of the tongue so we've changed to Tenex.

"In the last ten years, scientists have recognized lighter symptoms," said Dr. Robin McEvoy, a child psychologist in Denver. In the past, "Tourette Syndrome had been grossly misdiagnosed and only patients with severe symptoms were recognized," according to Haerle guidebook. Also, Tracy Fischer explains that patients were also institutionalized as mental patients and "although we will never know the numbers, the consensus is that the majority of severe cases were either incarcerated or committed." They were only quietly spoken by family members as "the family problem." And then the conversations were hushed. Fischer writes a column for The Tourette Syndrome Association's NEWSLETTER, February 1995, Volume 4, Number 1, in the section: JUST ASK TRACY. My family talked of one of my cousins having some "problem" but they never spoke to us "youngin's" about it.

We've learned from Dr. Finkel that most patients have at least two symptoms for it to be considered "Tourette's," as it is sometimes called. Another symptom or disorder, which my daughter has, is Attention Deficit Hyperactivity Disorder (or ADHD). This is similar to Attention Deficit Disorder or ADD, but is also accompanied by hyperactivity. This disorder has had an increase in reported cases, according to Haerle's guidebook.

Other accompanying disorders can be Obsessive-Compulsive Disorder (OCD), aggression and sensory integration problems as well as learning disabilities (but not in all cases). The problems that can start in school for Touretters are mostly caused by social behavior. The child either has difficulty in social situations or is teased by children who do not understand. In either case, educating the truth can be very helpful. Danielle constantly hugs practically everyone she meets.

Most patients make small noises like repetitive sniffing, blinking, face grimacing or clearing of the throat and others that may be a bit more embarrassing, such as in another related disorder called echolalia. All medical professionals and counselors who work with TS patients say never (under any circumstances) should a parent or teacher, or any authoritative figure, scold a child for these symptoms of this condition.

The child is not at fault and can't suppress it, or if they can, not for very long or often. And if they do, the tics can come back more severely than when they first felt the urge. The child is not necessarily a bad child, he or she may just be repeating something they heard. I found this out by listening to a tape by Adam Ward Seligman entitled, "In the Blink of an Eye." The author tells of his own life's story with dealing with Tourette Syndrome and helping to write an episode of "Quincy," a dramatic television series in the 1970s starring Jack Klugman.

Many children and adults with TS are gifted in intelligence and imagination. Furthermore, they can become just about anything that they set their hearts on. A fine example of this is Jim Eisenreick of the Philadelphia Phillies who hit a home run in the 1993 World Series and whose team won the National League pennant for that year, according to his article in Boy's Life Magazine, November 1994, which was adapted from Guideposts Magazine.

As you can imagine, my daughter and I have been through our own little wringer and we've grown stronger because of it. It will take a lot of patience, time, love and hard work to make this more a routine than a problem. Now I realize that learning about Tourette Syndrome has given me a lot of answers to how she acted before the onset of her twitches. God is helping us down this new road we must travel and with His help, we can make it. The congregation at our church has been very warm and caring. I accepted Christ as my Savior when I was a child and now I've realized He is still with me. I have come to know Him by reading more of the Scriptures and on July 16, I was baptized at my church. Danielle has also accepted Christ as her Savior and was baptized. She and I also have had counselors through the Women's Crisis Center, a Colorado chapter of the United Way.

Dani will be nine-years-old soon and she is doing fine on her "meds." She's being seen not for how she twitches or how different she can be, but for how good a person she truly is. She plays with the kids more and can explain her TS by herself. She is sympathetic and understands people don't know too much about it so she tells them, "it's not me, it's my Tourette's. I can't help it. It gives me twitches."

There is a lot of hope for children and adults with Tourette Syndrome now. To find out more information about TS call for the local chapter of the Tourette Syndrome Association (800) 237-0717, in Colorado call (303) 832-4166 or write Tourette Syndrome Association, Inc., Rocky Mountain Region, 1420 Ogden Street, Denver, CO 80218. National Tourette Syndrome Awareness Day is July 15. For more literature for children and adults on Tourette Syndrome write to Hope Press, P. O. Box 188, Duanrte, CA, 91009-0188 U. S. A. San 200-3244.

Update: Danielle is 14 now and doing fine with the other meds she takes, such as Luvox for OCD, Ritalin (which can make her tics worse but helps in school), Tenex for ADHD and Rispardol for her tics. With all of these meds, she has to take a prescribed medication for stomach pains. This may seem a lot but she has a new psychiatrist and we get through one day at a time. I will never try to shape my daughter into the "cookie cutter" shape created by the public, but these meds can help her concentrate on being herself. God has given her a caring heart to help lift the spirit of the elderly and I am very proud of the service she does for His people.

The CBS series, Touched By An Angel had produced an episode with a character who had Tourette Syndrome Christmas, 2000. Danielle and I cried through the whole episode which demonstrated a truthful portrayal of the symptoms of Tourette Syndrome but we are very grateful for the exposure that may help someone out there who needs help.

Laurie Rosenblum of Belmont, MA sent in this personal experience piece from her collection of TS related poetry and prose entitled My Dance with Tourette - Personal Reflections. For information on how to purchase this book, please email Laurie

It's a sunny, spring day in Boston. I'm out taking a lunchtime break from the hectic pace at work. The struggles of TS are spinning inside me, catching me in their web. I'm wound-up, edgy, and out-of-breath. To get grounded and centered, I sit on a bench in the park with my head down between my knees. My head and neck are ticcing out the end of a storm. I just want to breathe and relax.

I'm beginning to let go when a woman comes up and asks, "Are you okay?" I say, "Yes, I'm just resting," my usual response in this situation. "Are you sure?" she says. I say "Yes" again with a bit of fierceness in my voice, trying to protect my precious space. "Please just leave me alone so that I can relax." She walks away reluctantly, as if she doesn't really believe me.

Soon I start stretching and letting out big yawns. My body is finally able to take in more of the oxygen it cannot get when it is tense from holding in excess energy. I stand up, stretch my arms high in the air, open my eyes and mouth wide, and take a deep breath. Then I drop my arms and let my breath out with a big sigh. Next I do a couple of yoga poses. This all feels great!

Two men stop and look at me strangely. "Trying to wake yourself up?" says one, with a strong note of sarcasm. The other one snidely laughs and quips, "No, she's probably just one of those New Age worshippers." They continue walking.

My insides are churning. I know I should just let their comments blow over. But I am so sick of getting remarks every time I do something that doesn't look "normal," whether or not it's tics.

I want to yell out, "Can't you leave me alone? I just need space to recuperate from the battles going on inside me. I don't need your comments too." But to avoid fueling the fire, I just yell the words in my head and hold in this new round of wired energy.

Then I sit down, ticcing head between my knees and wonder, "Do I have to stay holed up in my apartment so that I can move in the ways my body needs to and avoid these comments? And besides, What is 'normal' anyway?"

Laurie B. Rosenblum
Originally written September 1996
Revised October 2000

Long ago I knew a child. Her favourite uncle called her his 'Fairy' To the outside world, the little girl appeared timid and withdrawn, a good child, eager to please and seeking approval for everything she did. 'I'm sorry, I'm sorry, I'm sorry,' she would cry when things went wrong, then she would carry the heavy burden of guilt for displeasing others. When the little girl began to screw up her face, twitch and jerk her neck and shoulders, the big people would tell her to 'Stop those silly things', and labeled her nervous.

The fairy had ten brothers and sisters, most of who had a variety of nervous habits

The child learned at an early age to control most of her tics, storing them up for when she was alone, but the things that went around inside her head could not be controlled and affected her everyday life. Certain numbers dominated her thoughts and she constantly hummed tuneless sounds. Small things irritated her.
My shoes don't 'feel' right.
My sock has a bump in it.
One shoelace is longer than the other.
I HATE RED!
If I kiss the uncle twice, I must kiss the auntie twice or I feel guilty.
I must touch it four times.
Odd numbers are all wrong.
If I scratch it, I must smooth it the other way.
I must miss the cracks on the pavement. Oh, No. That was last week. I'm over that now.
This week I have to step in each square four times.
Pictures must hang straight.
The drawer|door must be closed properly.
I don't care at all if my room's messy, but WHO MOVED MY DOLL FROM HER PLACE!
4x4=16 I love it.
Something terrible will happen if I go to school today.
I hit my friend last year and I can't forget it.
The same thing has been in my head for a week. PLEASE MAKE IT STOP.
I just want the world to be perfect, people to be perfect, me to be perfect.

The child feared heights, large moths, spiders, deep water, thunder, sharp knives, crowds and confined spaces, but she was mostly afraid of the dream. Every night, she was trapped in a cage falling into a never-ending abyss

Things didn't change a great deal as the fairy grew into adulthood, until one day she heard the expression TOURETTE SYNDROME. She began to realize that she was not alone, that there were others out there, others who may understand how she felt.

Email Susie King



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