Tag Archives: The Secret Illness

Horror woman behind the matte glass

How not to be invisible

Horror woman behind the matte glass


Five years ago, I woke up in the middle of the night with the most extraordinary pain in my lower back and legs. I remember propping my feet on the headboard to get relief and then having to move every hour or so to get comfortable again. Lying on my side in the fetal position, as I have since I was a child, was out of the question, which left me like a rotisserie chicken, rotating between belly and back all night.


In the morning, I bathed with epsom salts, tried every yoga and pilates stretch I could think of to get the kinks out of my body, and was able to pinpoint the location of the injury in my lower left lumbar. I tried getting a massage, which made me scream in pain, and finally went to the doctor, who sent me to a back specialist, who put me on pain meds and prescribed physical therapy.


Long story short: After four sleepless months, trying every pain killer known to western medicine, as well as several cortisone shots that did nothing, I went to a pain specialist who told me he could not help me and that I needed surgery. My hero, Dr. Hummel, removed the bulge on my disc one morning and by afternoon, it was over.


I remember many sleepless nights during that period, pacing my walk-in closet like a caged animal or firing up the heating pad in the microwave while my family slept. One night in particular stands out. I got out of bed crying in pain, and went to my studio, where I had my meditation cushion by the window. I lit a candle and as I sat, this thought came to me: I never knew this kind of pain existed.


If I was in this much pain, then others must be as well.


This is one way we develop compassion, through suffering. That old cliche about walking in someone else’s shoes actually fits.


I was thinking about this episode a few weeks ago when I was in San Francisco, attending the annual conference of the International OCD Foundation. The conference is the one place in the world where everyone in the building understands what my family goes through, day in and day out.


My daughter, Shira, has OCD, a disease of the brain, a glitch in the mind that causes her tremendous anguish and suffering. It is an affliction our culture treats like a punch line to a joke, but I can assure you, it is no joke. It is a beast, a separate entity living inside my daughter’s mind, and it tortures everyone in its path, trying get what it wants, which is certainty and relief from its fears. (You can read about my daughter’s experience at OCD Con and her struggle with OOC on her blog, Me, Obsessively.)


I won’t go into the particulars of the disease, what seems to be happening in the brain and why it manifests in certain behaviors, although I am working on something for family and friends so they can better understand what is happening in our lives. Instead, I want to share with you a website and project I learned about on the last day of the conference. You can learn a lot about OCD at The Secret Illness, but it is also a fantastic model for creative collaboration.


The Secret Illness began with a conversation between friends — Becca, an actress, and Liz, a filmmaker. Becca shared her childhood memories of her mother, who had OCD — the rituals that had to be performed before going to bed, the long days stuck in the house because she was afraid to leave.


“This is not what I thought OCD was”, said Liz. “We have to make this illness better understood.” And so began their collaboration, an idea for a website that mushroomed overnight.


The heart and soul of The Secret Illness is “The Wall,” where individuals with OCD and their loved ones can share their stories, with as much candor and/or anonymity as they choose. Everyone submits a picture, which is pixelated for privacy. It is a place for those suffering to be heard, as well as a place to learn about the realities of living with the illness.


Equally touching are the collaborations that have begun between Liz and other artists and between artists she connects. The website team shared a few of the films at the conference, including This Old Ghost, for which Liz animated a poem by the writer, Lloyd James,


This Old Ghost is haunting and beautiful, absolutely perfect at one minute and forty-four seconds. I’m not going to describe it here, because I want you to watch it and don’t want to spoil the impact.


As the organizers were describing The Secret Illness and its development, it occurred to me that the most important aspects of the creative process were represented: 1) speaking up and being heard, and 2) deep listening.


It is important that individuals with OCD have a place to speak. It is equally important that someone listens. That, to me, is the true beauty of the project. (By the way, my daughter will be working on a collaboration for The Secret Illness in the coming months, something that combines her skills in drawing, writing, and music.)


I was thinking about The Secret Illness last week and decided to throw out this question on Facebook: In what ways to you feel unseen or not understood?


The answers broke my heart. I share a sampling of them here.


  • Except for with my widowed friends, the ways losing my husband has shaped and impacted me.


  • Having blindness that’s not obvious or apparent. Having to explain and being an inconvenience.


  •  In all I do at my day job. 


  • Suffering from depression. In my heart I know it’s not something I can control, but the stigma is real


  • Over the past year or so, I have somehow become an afterthought for a lot of people I thought were my friends. I don’t get invited out. I see photos on Facebook full of people I know who got together and did some fun thing and nobody told me about it or asked if I wanted to go. I don’t know if it’s age, or if it’s that I’ve “come out” as someone with depression and anxiety, or some other factor.


  • i am not seen by family … my mom was the only person who did … and she’s been gone five years… and i am misunderstood because of my manic-depression … mental illness


Suffering should not be compounded by isolation, but it usually is.


We need to tell our stories and make our lives seen and understood through our work, for our sakes and for the sake of those with no voice. And we need to listen to others tell their stories and bring their suffering to the attention of the world.


Art and literature are the alternative to walking in someone else’s shoes. It is our job to provide the perspective that will foster compassion.


If we don’t speak for ourselves, who will speak for us? If we don’t bear witness to the others, how will they heal?


There is more to be said about The Secret Illness, but you’ll have to for yourself. What ideas does it spark for you? What does it inspire. I’d love to know.