Self-Advocacy: The OCD diagnosis…my son’s voice

My oldest son was required to write an essay for school shortly after he was given the OCD diagnosis. He decided to focus his essay on his journey with OCD.  With his permission, I would like to share his essay, which received a writing award at school. Brace yourself…it is, by blog posts standards, quite long. But it was so compelling that I needed to share it in its entirety (unedited by mom). I share this with you because this is the greatest definition of advocacy and social consciousness. We have to teach our children to use their voices for the most important cause…THEMSELVES! SELF-ADVOCACY is the most powerful form of advocacy that they can learn and

As parents we want to shield our children from hurt and pain (and shame). I know I was so afraid when we were given my son’s diagnosis. Partly because I had a limited knowledge of what OCD was ( a little knowledge can be very dangerous in many areas of life). Maybe you sense something is gong on with your child and it leaves you feeling overwhelmed. It is my (and my son’s) hope that this essay may be helpful to those suffering with OCD and for others this could be a source to give you more information to deepen your understanding of OCD and anxiety-driven disorders.

NOTE: I originally included images in this post but decided to remove them. I didn’t want to distract from his intimate thoughts and raw feelings. I hope you stay with it and appreciate him leaving his heart on the page.                   I’m in awe of his bravery…and his strength…and his willingness to share with others.

The words that follow are his own…

ObSeSsIvECoMpUISiVe 

Extinction

Second grade: The year of perpetual recess, the year of bragging that you can “already do an o in cursive”, the year of Venetian red streaming down kids’ noses for vying in a competition of looking at the blinding sun, the year of screaming children, the year of sweaters seemingly drenched in snot, the year of fractions and multiplication, the year of the unidentified “cootie” disease. But not for me, for on this day, I am in a universe of my own thoughts; these thoughts surround me, like planets around the sun. I am the center. But those thoughts in orbit take me for granted, for they mentally push me, shove me, injure me. But, they wouldn’t exist without me.

Coming in from a tiring recess, I walk down the long rows of beige desks. Pat, pat, pat, my steps turn around the hall. Pat, pat, I step into the classroom. As quickly as I step in the doorway, I feel myself step out of my consciousness; some force is taking over my brain. One more step out, another, another, progressively, quicker. My mind seems to whirl, as I am taken out of existence suddenly. My eyes drop low, Not closed, but as if my eyelids were weightlifters, at the split second before they let the prodigious weight become victorious. Then, there is a voice in my head. But, it isn’t that voice that sounds like your own, when you say “Remember to get the groceries.” It is a different voice, one not familiar, but very convincing, strong, powerful, from inside my body, and it shuns my own voice to its own muted island when it says, “A large meteor will crush you and your classmates while you are in this room”.

A gory image pops into my mind. A spherical meteor, the size of my own classroom, hits the kids, leaving intestines, blood, unidentifiable masses of red gush; real things for me. An overwhelming thing to see for an 8-year-old, I started to hyperventilate, slowly, then more quickly, my heart is beating through my chest, my stomach is churning so much you would have thought it was a gymnastics Olympian. My muscles tense up; my face clenches; I am about to explode! Then the voice says, “To prevent it, count to ten and rub your hand across the table!” Tears surface on my face, I feel the smooth cool desks,“ 1 2 3 4 5 6 7 8 9 10”. I feel calmness, packed inside a few small places to write on. “1 2 3 4 5 6 7 8 9 10”. I feel as if I am on a squishy, satisfying, serene, snug mattress that isn’t too hard, “1 2 3 4 5 6 7 8 9 10”. I feel tranquil.

Death

Since my incident in second grade, I have been continually receiving more thoughts, similar in style. I had thought it was an everyday thing, for every body, so I did not think much about it. Fifth grade P. E.: The dreaded bar. Not that anyone had to climb on it. We wanted to climb on it, like a venomous snake wants to bite. But, if we did, we would be walking on thin ice, and at the bottom of the frozen lake was detention. My class had just started walking towards the P.E. field, then a vision of a knife slit my throat; anxiety overtook me, and my breathing was heavy. My mother was going to be killed, my brain focused on a stereotypical black-clothed man, taking a knife and rubbing against my mother’s throat, again and again, repeating that moment until that voice, that commanding voice, threw any rational thoughts I had in the dumpster to rot. He boomed, “THIS WILL HAPPEN TO YOUR MOTHER IF YOU DO NOT TOUCH THAT BAR TEN TIMES!” I tried to contain it. I really did, but that voice, powerful, clenched my face, my arms, my legs. My heart might as well had been on the ground, spasming. I gave in, and I touched that bar. Inside, it felt like heaven had encased me and life was grand, but on the outside, on the outside I knew that I was in serious trouble. So, I ran. Ran into the bathroom stall, tears streaming down my face because I was not a strong human being that can control his thoughts. At that moment I was a weakling, for I could not deal with anything that supposedly everyone else could. Insurmountable, uphill battle!

Recognition

Fast forward a year, I am in a psychologist office. It feels like he is asking me useless questions, in monotone. “Do you feel like you are controlling the thoughts? Are you only sometimes nervous? Does this only happen sometimes?” No. NO. NO! One million thoughts race through my mind, some unrelated to this issue, But most about the issue. I fake nod, pretending to understand what he is saying, as my mind starts spinning, stomach spinning, thoughts spinning. I have to touch the ceramic lamb, inside the crevice in its mouth, ten times. An image leaps into my head, from nowhere, of a fan up above, crashing below. We would fall to our deaths. That feeling builds up inside me again, hyperventilating, my heart racing, racing, then dropping. Then racing again. I pinch my mouth, curl my toes, tap my finger, pretending I am holding my composure when really, really my act is a plastic diamond that is being sold on Craigslist. Then, I erupt like Mount Vesuvius. Salty streams of water plopping on the ground, my eyes red, I get up running for the lamb. I love the lamb. I grasp it, touching its ceramic crevices “1 2 3 4 5 6 7 8 9 10”. I am relieved, but only for now. At the next instant…

I hear the cold, hard letters: O-C-D. Like a miner slamming his pickaxe against coal. Something I thought meant people who were perfectionists, people described as anal-retentive, people who color-code their closets, people who just “wash their hands a lot”, people who are systematic, slick, spick-and-span, sleek, spotless, spruce. Neat freaks. Not me. But, then again, O-C-D may not be that bad. The stiff, consolidated word may not be so stiff, for OCD is the hard, yet comforting reality. O, warm cocoa. C, hot tea. D, blues of the lukewarm water I can jump into. Knowing that a good 1 percent of people suffer from this, the cold, hard letters were a blessing.

Obsessive– one particular thing that you are obsessed with; in my case cringing thoughts, violent thoughts, and having no control in my mind.

Compulsive– things that one does to get rid of these disturbing obsessions- “1 2 3 4 5 6 7 8 9 10”, “tap, tap, tap”.

Disorder– something that affects your everyday life: Anxiety, my social life was in shambles.

Being educated on this disorder now, I know that OCD can come in many forms and sizes. It perturbs me when people occasionally say, “I am so OCD today” when they color code their notes, when they like to keep clean and neat. OCD is an actual disorder, and I am experiencing it.

So, the next time you are about to say that you have OCD for “this video game you like”, or for the “angle of your face on your selfie camera,” know that it is not a cute quirk, but something I, and many other people, have experienced. Put yourself in our shoes.

4 thoughts on “Self-Advocacy: The OCD diagnosis…my son’s voice”

    1. Hi Doni,
      Thanks for hanging in and reading the entire blog. I think we have to begin to take away the stigma of mental disorders, stop keeping silenced in the shadows. My son is ready to help with that! Thank you for your comment.

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