A Bedford woman candidly recounts her lifelong struggle with an often misunderstood condition.
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By Kristen Valente
“Why are you doing that with your mouth and your face? You look so weird!”
“Kristen, if you don’t stop rolling your eyes at me, I am going to ask you to leave the classroom.”
“Why can’t you just stop? I do not understand why you are feeling so anxious right now; just let it go.”
“You worry way too much.”
How would you feel if this is what people said to you your whole life while wishing you could “just let it go”?
My journey started with a very vivid memory of my bus ride home from school when I was in fourth grade. I was sitting by the window, and a girl asked me why I kept doing funny things and making funny sounds. “What do you mean?” I asked. She repeated in a judgmental tone, “why are you rolling your eyes and doing that to your face”? I did not know what to say and retreated into the bus seat with an overwhelming familiar knot in my stomach. Along with the weird things I did with my face, mouth, and eyes, I also had an infuriating chronic stomachache every day that always started at 3:00.
The cycle started in my brain with this innate need to do funny things, followed by this dark feeling of worry that I would not be able to sleep that night. I thought to myself, “what if I can’t sleep” “what if mommy or daddy have to stay up with me again” “maybe if I sneak into their room and sleep on their floor for one more night, it will be ok.” The face movements, the worry, and the what-ifs were too much to bear, and the tears flooded my eyes. By the time I got home, my mom knew; she knew I was worrying again, and all she had to do was hug me, and it would be all ok until it wasn’t. Her compassion, embrace, and patience were a drug to me; It is what I craved after a long day of funny face movements and worrying.
Until I knew what was wrong with me, my life was a process filled with despair, loneliness, frustration, and exhaustion, but then growth.
I received a diagnosis of Tourette’s Syndrome with Obsessive Compulsive Disorder and Anxiety Disorder at the age of nine. Tourette syndrome (TS) is a neurological disorder where someone shows repetitive, rapid, and unwanted movements or vocal sounds called tics, aka “funny face movements.” There is no cure for Tourette Syndrome. General Anxiety Disorder is a condition of excessive worry about everyday tasks and situations. GAD can be managed with therapy and coping skills.
Without mercy, classmates teased me well into high school. I often cried because of the teasing, and in Senior Year, the class assigned me the “biggest baby” for the Senior Superlatives. Many nights throughout my life, I fall asleep wishing there was a cure for the tics to end. By the end of the day, I am often emotionally and physically drained. Often someone with TS will engage in a ritual or pattern of tics; If the pattern is not done “right,” I wanted to start the pattern again and again until it was. The desire to get the pattern right was a big distraction for me in school, and I was labeled as inattentive. The disorders work together in an extraordinary way that assumes so much brain space. I struggled in my younger years, but the negativity from the educators in my high school and the students who crowned me the “biggest baby” only made me want to fight harder to combat their perceptions of me and my disorder. I grew tired of feeling I had to explain myself to others while feeling angry that I even needed to.
Listening to music, reading, and tasks that require fine motor skills help me curtail the desire to tic. The fine motor skills keep me hyper-focused on that task to the need to do my combo of tics is surpassed, and I get some relief. But anything that stimulates me, whether its excitement for something happy or a stressful situation, will halt the calm and throw me into a tornado of pervasive worrisome thoughts and fury of tics.
Despite the negative things my guidance counselor said to me, I graduated high school with a Regents Diploma and received a full scholarship to the College of New Rochelle for two years. I received my Girl Scout Gold Award when I was 18, and I was granted a tremendous opportunity. I went on to transfer to Providence College, where I majored in Psychology and graduated with a 3.2 GPA. Shortly after graduating from Providence College, I pursued a career in Human Resources. After working for many different companies, including Morgan Stanley and PwC, I now do consulting work. I have had a very successful career and have been part of various committees and boards.
I am now 44 years old and have a supportive husband and two wonderful daughters (12 and 15). I am originally from Brooklyn and moved to Mamaroneck when I was in 8th grade. I have lived in Bedford with my husband and children for 16 years.
Every day is a struggle, but I have learned to cope and live. While I feel I have worked towards gaining a positive outlook on life, I am still very much aware that others struggle with Tourette’s, OCD, and Anxiety. But I hope my story can reach young kids and adults to find strength.
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