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by Michael J. Chapman

Edited under Michael's Supervision by John S. Hilkevich, M.A.

Journal Entry #1

My home all my life was in the city, and I am now living with one sister and two brothers and a loving mother. She is a single parent and does her best to take care of us. When I was twelve years old I met a person named John S. Hilkevich, who was hired by an agency to be my advocate and counselor. He has changed my life. John and I have had happy times and sad times; times when he demanded more of me than I thought I was capable of and I hated that, and times when I surprised myself with my capabilities . . . happy times. It was John who first noticed I had symptoms of TS and OCD. I realized for the first time that the simple twitching of my nose when I was ten years old was not the bad habit that people always said it was. My most painful tears were yet to pour out of me, however.

Even then I was not new to living with disorders. I have Severe Hemophilia, a blood clotting disease, and I am infused with clotting factor several times a week. (Now I can proudly infuse myself, giving me a greater sense of independence.) But my body has to do things that had nothing to do with hemophilia. My eyes have to twitch, my back has to crack (and my fingers and knees too) and just today I was at the hospital for a severely sprained back due to multiple spasms.

Journal entry #2

John is coaching me on how to write for an INTERNET magazine, another new experience for me. I can only write a little at a time, so this will read more like a diary than an adult's biography and therefore I will be jumping around from topic to topic about my life. Right I am now feeling as if my life with TS and OCD is a living hell. Mood swings are a problem that can be part of the syndrome. I will just wake up and be in a very bad mood, not wanting to talk to anyone. Kind of what I am experiencing right now.

I know people can get mad at times and throw temper tantrums, but I know enough about TS and OCD to know that rage reactions, over the littlest things, can be a big part of it. Many times when someone yells at me, I will start to throw things around and break things. One time when I was yelling and screaming I punched a mirror and broke it. Just this morning my brother and I were yelling at each other and I put a sneaker through another mirror. Another time I broke a stereo speaker and put my foot through a plastic milk crate. I once threw a penny so hard I split a glass cup directly in half. Now I am rubbing the sole of my sneaker up against the top of the other and they both are getting really worn.

Sometimes when I have to roll my eyes into the back of my head I get bad headaches. I wake up with head pain too, then I get into a bad mood. So it all ties together, things my body has to do to release the creepy-crawling tension feeling under my skin.

Today I went to see a neurologist and he recommended that I see a child psychologist and he also said that I fall under the TS category. He would not prescribe medications until further tests and consultation. So now I have to wait to see another doctor to get some medications to control this problem, if I do need them. I am relieved for now that I got one MD out of the way on my road to happiness.

Journal entry #3

Not a good day! A teacher threatened to send me to the disciplinarian office . . . I had this urge to keep banging my fists on the desk and she told me to stop it and I tried. Tensions built up and I just had to get a few hard knocks on the desk and I was told to stop it or else. One way to handle bad tics is to ask for a pass to the restroom and off I went . . . a humiliating thing to have to hide from the world in a toilet stall to be victimized by only my brain, but it does add a new meaning to restroom. No one knows about my OCD except my counselor, John. Who else would really understand?

Last week was even worse. I had to go to the hospital for back pain. My muscles were twitching so badly that I could hardly bend over or walk. I was really scared. The more my back twitched the more I had to twitch it myself. My mom decided to call an ambulance. I felt very lonely because I do not know many people that have to do what I do to my body. I am still a little embarrassed to talk about it and ask myself, 'Is this normal?' The sensations do confuse me because what does twitching my back have to do with having to rub the heel of one foot into the top of the other? The tensions build up so much that I think I am going crazy! They hurt too!

Maybe that's what is behind my rage reactions. I was told that they are sometimes a part of the TS and OCD symptoms but maybe it is because my mind gets so jumbled up and my body gets so full of tension and I keep on holding and holding back until I just blow up like a volcano. Then I start yelling and throwing things around and my mom starts (understandably) yelling at me but I really do not hear anything because my mind seems to go blank. It's very scary because I know after that happens it was this thing called Tourette syndrome and not really me.

Sleep! That's the great escape. I get so tired from holding all this back that often I just have to go to bed early. And I go really confused sometimes, not knowing what to do and asking myself all these questions like, 'Why am I doing this?' But I know why I am doing it so I just go to sleep to try to hide from it all but when I wake up it's just as bad. I must be twitching away in my sleep because so often my bed covers and my pillows are across the room and the sheets are torn right off the bed. Controlling these symptoms gets me so tired I sometimes just have to sleep 11 or 12 hours a night.

I am sure I have something to learn from all this OCD and TS but I am not sure what that is yet. Sometimes I wish it could just all go away. As I write this I am grinding my teeth hard. I do that all day long, every day. I better go to sleep again.

Journal entry #4

People like the way I part my hair down the middle. Little do they know it's to hide my bald spots from pulling my hair out. The crawling feelings under my scalp are hard to describe but easy to get rid of . . . just yank out a few hairs by the roots! My counselor says there is an actual medical name for it: Trichotillomania. Another way is to bite my skin hard enough to cause pain and bruising, which releases that tension but is not the best thing for a severe hemophiliac to do! Even though I try to hide this, I cannot hide it from John. And part of helping me get better is him not letting me hide these things John knows and my doctors know and so I am writing about it in this essay.

Hemophilia . . . TS . . . .OCD . . . . I am really beginning to feel what other people must go through with their disorders. In John's class he gave half of us a disability: Some of us could not use our legs, some our arms, some our mouths, ears, eyes, thumbs. The experience made us appreciate a little more the problems of disabilities and the different reactions of those around us who were normal . . . . The demands of having us around burdened them with the question of how to respond to us. Some teased us for their entertainment and some really tried to help us and accept us. Just like in real life.

Journal entry #5

This is hard to write. I learned that TS can affect handwriting. Now I know that from experience. Some words and letters trigger cursive writing. For example, I will begin printing and certain letters will force me into cursive, even if I want to continue printing. Making a mistake is a big hassle because I have to erase it very intensely to the point of tearing the paper. My commas and periods are sometimes light, then I suddenly have to overreact and make them as dark as can be. Now I am becoming excited for no reason at all, which includes feelings that I did not do something right, even though I cannot think of what that is. Worse are those times when I get anxious and uptight for no reason and I just have to wait.

Journal entry #6

I really believe that we were all put on this earth for some purpose and hopefully when we die that purpose will be accomplished. Or maybe we will not die until it is.

Meanwhile, we have to cope with our disorders and problems. I use prayer a lot. I believe people praying for me and my cries to God worked because even though many people with hemophilia have physical damage to their joints and other problems by the age 14, I really am in perfect shape with no significant bleeds since I really started praying two years ago. Many adults haven't done what I already have because of the opportunities provided me . . . fast water canoeing, skiing, rappelling, skating, caving, boogie-boarding huge ocean waves, snorkeling, horseback riding . . . but only under the guidance of experts from programs like the Paul Newman camps for kids with hemophilia and other disorders and Environmental Experiences, Inc. The most risky thing I ever did was ride in cars . . . 50,000 people a year die from doing that!

Along with my prayers I was taught how important it is to take care of my body. As I said before, sleep is so important, along with good food. Sometimes I use lecithin and choline to increase my serotonin that does help to control some of my spasming. Some days I experiment and do not take it just to see what happens. Those days I really feel spaced out. Then I get into a bad mood and my anger happens very easily.

Another way my counselor taught me is using self-hypnosis. I meditate on the way I want to be and feel, zap that into my subconscious mind with a hypnotic technique, and it works wonderfully.

Working my body to get stronger helps too. John got me on a strengthening program and taught me to like eating healthy foods. Two years ago I use to eat nothing but hamburgers, French fries, and greasy potato chips.

John also cooked up this nasty tea from herbs bought at a health food store and it really helps me to feel mellow and it feels better than soda or coffee. Now I am really interested in herbal medicines and all the different ways to heal my body and emotions.

Journal entry #7

Now, I know I am just a teenager, and I am not an expert in anything, except being a teenager. So I do have some qualifications for giving a few pointers to others that I have learned the hard way. First off, let someone you know you can trust what you think might not be normal feelings, thoughts or actions just to check it out. I hope that you will pick a person who also knows a lot about why people act the way they do. If you are not satisfied that they understand, get another opinion because these symptoms are so easy to misinterpret for something else or miss entirely. Also express yourself and do not let your TS or OCD hold you back or make you hide . . . use its energy to put it in its place!

The people you are better off not listening to are those who tell you that you cannot do something because they do not believe in you. There are only two people in my life that I can say really believe that I am more capable of achieving things than even I believe. I listen to them and surprise myself. It feels good that I do not have to prove myself to them. My biggest job is proving myself to me. I know that will mean more tears and more triumphs.

EDITORS NOTE: Michael Chapman had been medically diagnosed with TS/OCD only a week before his 2nd journal entry, although he had learned from me that many of his emotional and behavioral patterns may have their etiology in genetic neurochemistry as long as a year ago (February 1996) in counseling sessions. The delay between client awareness and medical diagnosis was a result of the counselor's respect for the client's readiness to own his disorder and decisions upon treatment imperatives.
- John S. Hilkevich, M.A.