This is a piece I wrote for a fundraising event for Little Orange Fish, a local mental health nonprofit. The theme of the event was Feelings Are Real. I wrote this to convey the experience of trying to help someone with OCD, where the feelings are real, but the stimulus is all in your mind.
Emma was born at just under 6 pounds. “A wee girl,” the midwife said, placing her in my arms. The mystery of her smallness had overshadowed my pregnancy. By the time she was four, we had a clinical diagnosis and, at 17, thanks to a gene study at HudsonAlpha, an explanation. The study also confirmed something that we already knew about my husband’s heart.
Obsessive Compulsive Disorder reared its head in middle school. Her punctuation marks were large and heavily drawn. There was a lot of erasing. Homework was a nightly battle. There are different categories of OCD. Hers is seeking reassurance.
She even invented a word for it: confixed — confused and fixated.
When she was in high school, she got “stuck” in class, claiming to have no idea what the teacher wanted her to do with the paper in front of her. You can’t teach algebra to a person who is stuck, let alone have a conversation. Was it, we wondered, a tactic to avoid work? To shut down social exchanges that she found difficult?
She was overcome by the need to repeat questions. Her questions bloomed into profusions of sticky notes, filled composition books, overwrote history and science with screeds of blankness and confusion, exploding into tantrums. Sometimes Emma ended up in In-School Suspension, which is why the correlation between mental health and incarceration doesn’t surprise me. Two-thirds of female inmates have mental health problems.
Because of her intellectual disability no one thought she was a good candidate for CBT (cognitive behavioral therapy) and its companion, ERP (Exposure and Response Prevention) — the only approach proven to be effective. We limped along instead with sticker charts and token economy systems.
The bad thing that I worried about happened. I was widowed and the girls lost their father. Emma’s OCD got worse, but her complaints were the same: confusion, elbow bumps, stuckness.
Grief hardly made a dent in the script, but now danger was everywhere.
“Cuidado. Warning,” Emma said, noticing safety tape across doors, signs on freshly mopped floors, tornado sirens. “Take safety precautions.” And to me, she would say, “I just tripped a little. I almost fell down.”
From her job-readiness program, she would text me all day, hundreds of weeping emojis, exploding head emojis. “You have got to stop,” I told her, “This is just your OCD. None of this is real.”
No amount of reasoning or reassurance will assuage the anxiety or satisfy questions that are not really questions, but statements she is compelled to make. “I can’t hear you!” she’d scream and I would yell back, “Yes, you can!” And she would insist, “ No, I can’t!”
I remarried. My wife, a physician, pretended to examine Emma’s imagined bumps and scrapes. “You’re going to be fine,” she said. Her prognosis was the reassurance Emma sought, but the magic quickly wore off. We tried band-aids and then we gave Emma a pair of mermaid socks with the toes cut off that she wore over her elbows for protection. Emma stood in the middle of the room, distraught. “I can’t stop bumping myself,” she screamed. “It’s making me disrelaxed!” And then she would stiffen up and charge at us. There were not enough band-aids or magic elbow socks to make it better.
One day, my wife read an article about helping patients manage chronic pain. Those with the best outcomes understood they were never going to be pain free. The best way to manage the pain was not upping the medication, but reframing expectations.
The bumps were intrusive thoughts. They were always going to happen. We had to help her to see them as ongoing and inevitable, but also give her the tools to cope.
Our efforts to tackle the OCD with a therapist began just before Quarantine. The three college students in our blended family returned home, so we were living in a simmering broth of both real and imagined anxiety, with hand sanitizer and masks, empty shelves at the grocery store, and actual dystopia exploding all around us.
While we offered what reassurance we could to the other kids, with Emma we presented the world as a place of uncertainty. When she said, “I’m worried that something bad will happen,” we said, “It might.”
With ERP, you confront your fears in order to become desensitized to them. For several months, we jumped over storm drains yelling, “Take that, OCD!” We composed worst-case scenarios about falling down. We imagined the horrors of the storm drain. Stories without rescue or resolution. Then we measured her Subjective Units of Discomfort, retelling the story until she could tolerate it. Her depression lifted. She spent one morning immersed in building with Lego, a sustained activity that hadn’t been possible under the thrall of the OCD.
This past summer, while Emma is at a camp for adults with special needs, my wife and I travel to Los Angeles, to visit her oldest. Alex takes us to the La Brea Tar Pits, an Ice Age archaeological excavation site of fossilized skeletons of prehistoric animals in the middle of a park in Downtown LA.
To illustrate the danger of tar pits there is a diorama of three mastodons, one on its knees in the tar, trumpeting in terror, two on the shore, a baby desperately straining its trunk towards it. It is like one of Emma’s ERP stories, where she had fallen and was stuck.
Bubbles of asphalt form slowly, then subside. It strikes me that tar itself — churning, dark, sticky, smelly — is like emotions and feelings that are overwhelming and immobilizing, that threaten to drag us, and others, down with us.
I check my phone for messages to make sure I’m not being asked to come pick up Emma early, but so far so good.
Life contains plenty of tar pits. We all go through bouts of stuckness, some of us end up further from the shore, but the only way back is by lifting up one foot at a time, encouraged by the kindness of midwives and others, as we reshape the material of our lives to tell the stories we need to keep going.
Resources we found helpful:
A diagnostic questionnaire for OCD that can be self-scored
If you want a more comprehensive overview of what OCD is and how CBT with ERP works, watch this talk by a UCLA psychologist.
The Other Side 