Authors: Terry Spencer Hesser
Kissing Doorknobs (15 page)
“Sam!” We turned around and saw the pharmacist standing in front of his shop. He was looking at me as though I was a stripper or a prostitute or something.
“Hi, Uncle Joe,” said Sam casually. I thought I’d die.
Uncle Joe.
“Oh, sorry. Uncle Joe, this is my friend Tara. Tara, this is my
Uncle Joe
.”
“We met,” he said, and his
eyes
were steel.
“Oh, sure,” said Sam. “You know everyone.”
“No. I don’t think I know your parents, do I, Tara?” he asked.
“No, sir,” I said. Uncle Joe and I held each other’s eyes defiantly in a silent war for what we both believed was right. Uncle Joe looked away first. I was dizzy with my own joy.
“Nice seeing you, Sam. Say hello to your parents.” Uncle Joe went back into his store. Sam looked confused.
“It’s a long story,” I said. And one I didn’t want to tell, since it was really about Donna’s private life.
Over ice-cream sodas I told Sam all about my therapy and realized that he was the first person who
knew
how hard it was, who understood exactly what I was going through.
On the way home we stopped in the park, lay down in the grass and looked up at the sky.
“What are you thinking?” I asked him.
“I’m not telling you,” he said in a teasing voice.
“Why not?”
“Because you won’t believe me anyway.”
He was right. I probably wouldn’t have. But all of a sudden it didn’t matter so much that I would never be able to know his thoughts.
“What are
you
thinking?” he asked me.
“I’m not telling you.”
“That’s all right,” he said, and turned on his side to look at me. I could smell the slightly sweet smell of ice cream on his breath.
“It is?” I teased.
“Yeah. Because I can live with that uncertainty.”
And then he kissed me. An intense, warm, firm connection that traveled through my system on every nerve ending I had.
“Was that part of your contamination therapy?” I asked, forcing a lightness into my voice that I didn’t feel.
“I guess it is. Thanks. You’ve helped me a lot.”
“Are you going to have to do this again and again and again?” I asked with an almost straight face.
“I think so,” he said with an even straighter face.
Living with It
I
think I figured out my dream.
It’s a warm, sunny summer day. My friends and I are happily playing outside my house. We’re chasing each other and laughing. We all feel safe and happy. Then, out of nowhere, a giant monster pops up from behind a white house a block away. It is huge and fearsome and blocks out most of the blue sky. It is so big that in one step it will not only be at my house, it will be on my house, possibly crushing us to death. We all scream and run. I can’t run.
As I look at it now, it’s kind of obvious. That monster was my OCD. It came out of nowhere, blocked out my world and threatened to crush me. As much as I cried, I couldn’t run. I was paralyzed.
As it turns out, living with doubt is a lot less painful than trying desperately to live without it. Somebody said that a coward dies a thousand deaths but a brave man dies just once.
Because of my OCD, I had been trying so hard not to be afraid, I was hardly living at all. When I finally faced my fears and doubts, unbelievably, they became boring and then they went away.
Sometimes I’m mad that I had to have OCD, but
then I remember that I didn’t get to pick it. It’s like my blond hair, green
eyes
and eczema—it picked me.
And I am happy that I was finally able to choose not to let it control me. I’m very proud of that.
My old friend Kristin is on the covers of
Glamour, Seventeen
and
Teen.
I’m proud of that too, despite the sacrifices she’s making that I don’t agree with.
Anna, Keesha and I have resumed our relationship and walk to and from high school together every day. I love high school and I’m very, very proud that I can walk to and from it with my friends.
My relationship with my parents is a lot better. Actually, now that they don’t have to fight over me anymore,
their
relationship is a little worse. As it turned out, focusing on their own problems was not much easier for them than focusing on mine. But I don’t worry about it as much as I used to. And I try to stay out of my mother’s thoughts, no matter what they are.
My sister has been freed from having to beat people up for me, since I don’t act quite as nuts anymore. She seems a little bored now, though. I think she misses her old role as my heroine. Keesha says Greta should put her talent to use teaching a self-defense class to people who have been mugged. Anna thinks Paulo should come back to town just to take Greta’s class. We still laugh about Paulo a lot.
Donna got pregnant and went to live in a special school for “expectant” high-school girls on the other side of the city. I take the train to visit her there every Saturday. I miss her a lot, but I especially miss her on the train because I remember how much fun we used to have taking it downtown together. Donna misses me too and is always excited when I walk into that ugly
green “family room” where she spends most of her time.
The school is an old convent, and even though nuns don’t live there anymore, the building looks as if it has taken a vow of poverty if not chastity. The hallways are drafty, the banisters are loose and the paint is chipping. I always feel like holding my breath there, and I think that’s a normal response.
“Tara!” Donna screamed as she waddled toward me the first Saturday I visited. “Oh, my God, you look so
pretty.”
“Nah.” I smiled shyly and touched Donna’s belly, which was the size of a Volkswagen. “I just look thin to you.”
“Well?” she asked, hands on hips and pretending dismay. “Did you bring me candy?”
“Gummy worms … just like you asked for.” Donna’s face lit up with joy. Simultaneously she dove into the bag of colorful gelatinous worms and pulled me down on a plastic couch. She was smiling from ear to ear. Colorful gummy worms hung out of the sides of her mouth. I’d never seen her look so young or so happy. I sat down next to her and examined her face.
“So … you look good,” I said.
“I’m fat!”
“Not really,” I said.
“You know, maybe it’s the hormones, but I’m very happy. And I kinda like this place.”
I looked around at the plastic furniture, dusty mini-blinds and Sony Trinitron television tuned to a talk show and wondered what it was she liked.
“I know it doesn’t look like much,” she said in response
to my expression, “but the people are real nice here.”
“That’s good,” I said lamely. Donna stopped inhaling gummy worms and lit a cigarette. I grabbed it out of her mouth and put it out. “How selfish can you be?” I asked her. “Unless you’ve swallowed an oxygen tank for that baby, you better not be trying to poison it.”
“I think those tyrants are still inside you,” she said, smiling.
“Maybe. But they’re weaker. For instance, I don’t blame myself for
your
pregnancy anymore.”
“Who do you blame?” she teased. We both yelled,
“Uncle Joe!”
and laughed.
“So have you decided what to do?” I asked.
“No,” she said. “I don’t know what’s the matter with me, but every time I think I can give it up I feel sick, and every time I think about taking it home with me, to live in my parents’ house and maybe become a little me—I feel sick. I’m so glad I’ve got you,” she said tearfully.
“Me too,” I said.
“How’s your OCD?”
“Okayokayokayokayokay”.
We both laughed. I hugged her, kissed her cheek and told her I loved her. I thought about meeting her in the rain on that July day a year and a half earlier. I thought about the wishes she made when we sat on her roof. I hoped she’d get some of her wishes. We both knew her life was about to get very hard no matter what she chose to do with the baby.
As for my own life, I’m still battling my civil war against the tyrants. The good news is that, at least for
now, I’ve stopped the doorknob ritual, the praying, the terrible thoughts, the counting and the lining up of my food. I haven’t spoken on a stage yet, but that’s the least of my worries. I do behavior therapy whenever I feel the thoughts and urges returning and occasionally see Susan Leonardi for support.
Life seems so odd to me now. The people who love us can’t always help us. And the people who do help us sometimes need more in return than we’re capable of giving. I’m speaking of Sam.
Apparently, his parakeet died a few days after we kissed. Suddenly he became very worried about the germs responsible for the bird’s death. He didn’t call me and didn’t take my calls. I had no idea that his fears were escalating in a terrible cycle. When Susan finally told me what was happening to him I went to his house and rang the bell … again and again.
Finally Sam opened the inside door about six inches. He was wearing a mask and gloves. He looked at me with the saddest gaze I’d ever seen and didn’t say a word. Trying to remain calm, I stammered, “So … you … kiss parakeets, huh?” In silence, Sam lowered his eyes. I blundered on. “I know most people just say hello, but …”
“I’m s-sorry!” he stammered so quietly that I could barely hear him.
The screen door separated us. I tried to open it. It was locked. “Nice doorknobs,” I said evenly. “You’ve got good taste in—”
“Stop it!” he cried, and I let go of the doorknob.
“Then open the door, Sam. Let me in.”
“I … can’t,” he whispered.
We both stood silently for a moment, considering
our mutual dilemma. “I didn’t know OCD could come back this … bad,” I said quietly.
“Apparently,
it
can do whatever
it
wants.” He sounded and looked defeated.
“You can beat this,” I said calmly.
“Think so?” he said earnestly.
“I know so.”
“Tell me again,” he said, surprising me.
“You’re asking
me
for assurances? Me?”
He laughed at the irony. So did I. Then we shrugged.
“You look skinny,” I said.
“I’m having a very hard time eating …”
“You don’t think eating utensils have feelings, do you?” I asked.
“No. But I think they may have poisons on them. Or the plates may be dirty. Or the food could be contaminated or unsterilized. I … don’t believe it, of course, but … I can’t seem to make myself take that risk.”
My heart sank. “It sounds awful. How’re your parents handling it?”
“My mother’s decided to take antianxiety medication because my anxiety has given her so much anxiety.
I laughed. He didn’t. He backed away from the screen, afraid of my breath, my germs.
After a moment, I put my hand up to the screen. Sam vaulted back about two feet. I could barely see him.
“Do you remember what you were like before you got afraid of germs?” I asked.
“Leave me alone, Tara.”
“Or where you were when you hugged me? Kissed me?”
“I’m trying. I’m going back to therapy,” he whispered. “I hope this is a temporary relapse, but … it’s … very … strong.”
I put my other hand on the screen. “So are you. You’ve already proved that.”
“This is worse.”
“Oh. So you don’t have the courage to face your fears, after all … if it’s harder this time?”
“Don’t push me, Tara. You know how scary this is.”
I put both hands on the screen and recited what he had once told me. “You
have
to risk being afraid. You know that. And you have to do it because if you don’t, the fears will get bigger and bigger.”
The door slammed in my face. I was stunned, then furious as Sam hollered at me from the other side of the big wooden door.
“Go away, Tara
…
leave me alone!”
Suddenly I thought of the carnival and felt my mother’s frustrated rage flow through my body. I wished I could fight Sam’s tyrants for him, but I knew I couldn’t.
“Fine!” I screamed through the door. “Stay there! Paralyzed. Miss your own life because you’re a coward.”
Within a second, the door slowly opened a few inches. Sam stood in the shadow; only his mask and gloves were visible. I put my hands back on the screen. Both of them. Palms open. “I’m sorry, Sam. I just want to help you. Like you helped me.”
“Don’t be so superior … this could happen to you.” His voice was cracking with pain.
“I know,” I said softly. “And if it does, I’m gonna
need every bit of strength I’ve got. And the help of everybody I’ve got. That means you too. So come on.”
Sam’s hands met mine. Screen and gloves between us where we were touching. He was crying. I was crying. It was hard. But with this small gesture, we were fighting back. We weren’t paralyzed … or crushed by the monster. We didn’t fold or drop out. We summoned the courage to play the cards life had dealt each of us. Reluctant, insecure warriors but warriors all the same. And we weren’t alone.
BOUT THE
A
UTHOR
Terry Spencer Hesser is an award-winning feature writer, playwright, and independent television producer. Among her honors are the CBP Gold Award for television excellence and three Emmy nominations.
Although
Kissing Doorknobs
is not an autobiography, Hesser drew on her own experience as an adolescent in writing her story. She hopes that sharing her terror and the bafflement and despair of her parents will help others who wrestle with the “tyrants in their heads.” While researching this condition, she served on the Obsessive Compulsive Foundation of Metropolitan Chicago.
Terry Spencer Hesser lives in Chicago with her husband and daughter.
FTERWORD
by A. J. Allen, M.D., Ph.D.
Director, Pediatric OCD & Tic Disorders Clinic
Institute for Juvenile Research
Department of Psychiatry
University of Illinois at Chicago
In
Kissing Doorknobs
, Terry Spencer Hesser has provided a sensitive, moving and frighteningly accurate account of one young woman’s struggles with OCD. Beginning with Tara’s seemingly innocent first symptoms, we follow her and her family in their sad saga as Tara battles the disabling “tyrants in her head” while her parents haul her from one doctor to another, receiving multiple incorrect diagnoses and ineffective treatments. The family is terrified that Tara might be “crazy” and that the parents may be to blame. It is years before Tara is accurately diagnosed and receives appropriate treatment. Unfortunately, this tale is still all too familiar to those with OCD and their families and friends. But the situation is improving.
If you are reading this book because you have OCD, or because you have a friend or relative with OCD, you may have many questions about this condition. The following paragraphs try to answer some of your questions and point the way to more information and support.
OCD is short for obsessive-compulsive disorder. Obsessions are recurrent, intrusive, disruptive thoughts that cause severe distress and anxiety for individuals afflicted with them. According to many surveys, the most common obsession is a fear of dirt, germs, chemicals, or other contaminating substances. Other frequent obsessions include doubting one’s memory or one’s senses, fear of harm coming to oneself or others, a need to do things “just so” or “just right,” concerns with symmetry, and moral or religious fears. Compulsions are repetitive behaviors or rituals, either physical or mental, that are usually intended to minimize the anxiety caused by the obsessions. Given the prevalence of contamination fears, it is not surprising that decontamination rituals, such as hand-washing and cleaning, are the most common. Other common compulsions include checking, counting, avoiding anxiety-provoking
triggers, seeking reassurance (from family, friends, teachers and others), ordering and straightening, doing penance and praying. Like Tara and Sam, many children and adolescents with OCD have several different obsessions and compulsions at the same time. For example, Tara combines a counting ritual with avoidance of cracks in the sidewalk. Another feature of OCD Tara demonstrates is that the thoughts and rituals change over time, with the intensity of symptoms fluctuating and new symptoms replacing old ones.
Except for some children, a key feature of OCD is that the person with OCD possesses insight—he or she realizes that the obsessions and compulsions are excessive and unreasonable and that most people do not share these fears and rituals. Another essential feature of OCD is that the obsessions and compulsions must either significantly interfere with a person’s life or cause emotional distress. The end result, as Tara and Sam clearly demonstrate, is that people with OCD want to help themselves, to resist the thoughts and behaviors, but they do not because of the pure, unremitting, unforgiving fear that is OCD. In severe cases, even as simple a task as opening a door to greet a friend may become impossible.
At one time, OCD was thought to be very rare. But a number of studies have demonstrated that it is relatively common, affecting about 1 out of 100 children and adolescents. The condition is even more common in adults, with about 1 out of 40 suffering from OCD. Many children and adolescents with OCD also have other psychiatric conditions, such as attention-deficit hyperactivity disorder (ADHD), motor or vocal tic disorders (including Tourette’s syndrome), depression, other anxiety disorders, various learning disabilities (dyslexia, etc.) and oppositional behaviors. OCD increases the risk for alcohol and drug abuse and dependence, though many believe that effective treatment of the OCD lessens this risk. Many of the above conditions are discussed in
It’s Nobody’s Fault
(see Resources).
Sam’s discussion of the causes of OCD, including the role of the basal ganglia and genetics, is accurate (though the basal ganglia actually lies deep within the brain, not on top of it). Because OCD is caused by a problem with the brain, it is often described as a neurobiological illness. The OC Foundation in Milford, Connecticut, can provide interested readers with more information in this area.
The preferred treatment for OCD is behavior therapy, when
available, in the form of exposure and response prevention (ERP). This is the therapy Tara and Sam have. The person with OCD challenges the OCD directly, exposing himself or herself to triggers of the obsessions and then preventing the compulsions. The person learns that in the course of an hour or so the OCD will “tire out” and the anxiety will fade away. While ERP eventually gives the OCD sufferer power over the disorder, the process can be very frightening. One important variation on ERP has the child or adolescent make a list of obsessions and compulsions from less severe to more severe. Then the child or adolescent does ERP, working up the list from the less severe symptoms to the more severe ones. This is often easier and less intimidating for the person with OCD, and it encourages the person by promoting early successes in therapy. Another variation is to use cognitive therapy with the behavior therapy. In this version, the OCD sufferer is taught to recognize that the obsessions are the distorted thoughts and fears behind the rituals; then the sufferer uses this knowledge to counter the fears at the same time he or she does ERP. Behavior therapy may be done once a week or on a more intensive basis. When it is done weekly, some relief is often seen in a month or two. Professional and self-help manuals for behavior therapy are available from the OC Foundation.
Medications are another option for the treatment of OCD. They are generally recommended when behavior therapy is not available, or if a person cannot do behavior therapy for some reason, or in more severe cases. The medications most often used in children and adolescents are clomipramine (Anafranil), fluoxetine (Prozac), fluvoxamine (Luvox), paroxetine (Paxil), and sertraline (Zoloft). Medications can be very helpful in suppressing the symptoms of OCD, but they don’t “cure” OCD, and many people still have significant obsessions and compulsions. In addition, medications often take several weeks or months to work. The OC Foundation recently developed an excellent pamphlet on medications for OCD in children and adolescents.
The treatment of OCD doesn’t end with behavior therapy or medications. OCD hurts more than just the child or adolescent who suffers from it—as is obvious from Tara’s story. Parents and siblings are drawn into rituals or forced to endure them. Resentment, fear and shame are all common. The effects of OCD on the family are so profound that some people call it a family disease, and family therapy is often required. A new and excellent book on
this subject is
Obsessive Compulsive Disorder: New Help for the Family
(also in Resources).
Two other aspects of a child’s or adolescent’s life that are frequently disrupted by OCD are peer relationships and school. Problems in both areas must be dealt with to help the OCD sufferer recover. Peer support groups may be helpful, along with education of selected friends or classmates. Regrettably, materials in this area are only now being developed. Most are available from the OC Foundation. The OC Foundation also has some excellent materials for teachers and other school personnel. (Some are listed in Resources.)
The best news for those who suffer from OCD and their families and friends is that our knowledge of OCD is rapidly expanding. For example, there is some evidence that some types of infections may trigger OCD in children and adolescents via the body’s immune system. New information of this type may lead to new tests and new treatments for OCD.
There is help and there is hope for those who suffer from “the doubting disease.” The following resources should help you to find it. Good luck to you and your loved ones!
The following organizations are sources of information on OCD and related conditions.
OC Foundation, Inc.
P.O. Box 70
Milford, CT 06460-0070
(203) 878-5669
Fax: (203) 874-2826
http://pages.prodigy.com/alwillen/ocf.html
The major organization for those with OCD and their families. Be sure to ask about local affiliates in Chicago, Philadelphia, Rhode Island, St. Paul (Minnesota), Texas, Michigan, and Boston. Extensive list of publications, tapes and videos, including all the major works for laypeople. Many other activities to help those with OCD and their families, including an annual conference and periodic newsletter. Anyone who has OCD, who has a family member or friend with OCD or who works extensively with individuals with OCD should belong.
Anxiety Disorders Association of America
6000 Executive Blvd., #513
Rockville, MD 20852
301-231-9350
http://www.adaa.org
Tourette’s Syndrome Association, Inc.
42-40 Bell Boulevard
Bayside, NY 11361-2820
800-237-0717
http://neuro-www2.mgh.harvard.edu/tsa/tsamain.nclk
The main organization in the area of Tourette’s syndrome, a condition often found with OCD in children and adolescents.
Extensive publication list, newsletters, conferences; some material on OCD. Local affiliates across the country.
Children & Adults with Attention Deficit Disorder
(CH.A.D.D.)
499 Northwest 70th Ave., Suite 109
Plantation, FL 33317
305-587-3700
http://www.chadd.org/
The main organization in the area of attention-deficit disorder and hyperactivity, both of which often coexist with OCD. Some publications, local groups.
The following organizations are larger and include many conditions besides OCD.
National Alliance for the Mentally 111 (NAMI)
200 North Glebe Rd., Suite 1015
Arlington, VA 22203-3754
800-950-NAMI
http://www.nami.org/
The largest and most powerful mental health advocacy group in the United States. Affiliates across the country. Politically active locally and nationally in addressing the needs of those with any serious mental illness, including OCD.
Federation of Families for Children’s Mental Health
1021 Prince Street
Alexandria, VA 22314-2971
703-684-7710
http://www.ffcmh.org/
Parent-run organization that publishes a newsletter and holds conferences. Advocates nationally in areas such as educational policy.
Many publications on OCD are available from the OC Foundation (above). A few that I often recommend are listed below:
The Boy Who Couldn’t Stop Washing
, Judith L. Rapoport, M.D., Signet/Penguin Books, 1989. One of the first books on OCD for laypeople. Has become a classic in the OCD community.
When Once Is Not Enough
, Gail Steketee, Ph.D., and Kerrin White, M.D., New Harbinger Publications, 1990. An excellent self-help book, though slightly dated. Includes good discussion of older medications.
Getting Control: Overcoming Your Obsessions and Compulsions
, Lee Baer, Ph.D., Plume/Penguin Books, 1991. Another excellent self-help book.
It’s Nobody’s Fault
, Harold S. Koplewicz, M.D., Time Books, 1996. A layperson’s guide to psychiatric conditions affecting children and adolescents. Includes chapters on OCD, Tourette’s syndrome, and related disorders. Also discusses treatments.
Learning to Live with OCD
—
-for Family Members
, Barbara L. Van Noppen, M.S.W., OC Foundation. A must-have guide for families.
School Personnel: A Critical Link in the Identification, Treatment, and Management of OCD in Children and Adolescents
, Gail B. Adams, Ed.D., and Marcia Torchia, R.N., OC Foundation. A must-have guide for schools.
Teaching the Tiger
, Marilyn P. Dornbush, Ph. D., and Sheryl K. Pruitt, M. Ed., dHope Press, 1995. Valuable guide for schools dealing with students with OCD, Tourette’s syndrome, or attention-deficit hyperactivity disorder.
Obsessive Compulsive Disorder: New Help for the Family
, Herb Gravitz, Ph.D., Healing Visions Press, 1998; (800) 718-7080. A very well-done book for families “under the influence of OCD.” Includes a plan to address family needs.
