The author with her brother
My brother stood in the kitchen, staring at a stool. It was where he always sat. Having not visited home in a while, I was unaccustomed to his new habits and placed my purse on the stool. Following my brother’s intense line of vision, I realized my error and lunged for the purse. I carried it to the opposite end of the kitchen, my brother watching as if I held an irritated viper. I apologized as he walked over to the now empty stool and began his inspection, scanning the seat with his eyes. I apologized again because I knew he was desperately determining whether he could ever sit on that stool again. There was no way I thought he could get worse. He was 24-years-old at the time.
At the age of 30, my brother turned to our mother and said, “I never thought I’d make is this far.” As a mother, she didn’t know what was worse: that her son made such a statement, or that she agreed. We all did. For a grown man who has never been terminally ill or fought in a war, it’s a puzzling utterance. My brother suffers from a disease that is diagnosed as often as asthma. In his early 20s, he was officially diagnosed with Obsessive Compulsive Disorder (OCD). He became one of the nearly 7 million Americans with OCD. While his compulsions are propelled by a fear of germs, OCD comes in many forms. The most commonly known form, thanks to film (As Good As It Gets) and television (Monk) is ritual based — touching a light switch or locking and unlocking a door for a specific amount of time. The common factor of all forms of OCD is that they are absolutely crippling, ruining lives and permanently damaging families.
We make small, compulsive decisions every day. The hand towel should be folded this way. The coffee must always be in the Father of the Year mug. The bed must be made before leaving the house. When I take a morning walk in my neighborhood to get a coffee (half decaf, half regular, one tablespoon of milk) and a newspaper (daily Will Shortz addiction), I’ve become familiar with some of my neighbors’ compulsions. There’s the old woman who sits on the porch in her pink muumuu, compelled to clutch her rosary and say three Hail Marys when an ambulance passes. There’s an elderly gentleman who shuffles along the sidewalk in a a tweed jacket, despite the rising heat as spring melts into summer. He stops at each deli, leaning on his cane while straightening each stack of newspapers. He never buys one and he doesn’t want one either. I offered once.
Generally defined as an irresistible, persistent impulse, a compulsion is an act that is deeply imbedded in our brain from the moment we’re born. While scientists can wave their hands and point at a section of the brain where compulsive behavior originates, there is no chart or graph that can describe the emotional investment we make in objects that trigger such behavior. Whether it’s a rosary or a stack of newspapers, our brains insist that we must touch, fix, avoid, destroy, or heal these objects in order to satisfy the impulse, thus pacifying internal anxiety.
I used to not understand it. I harbored an anger towards my brother, as if his OCD were controlled by a switch that he was too lazy to turn off. After all, Christmas in my house isn’t shaking the presents under the tree or fighting over the last piece of pecan pie. It’s attempting to suppress my brother’s nervous breakdown after he drops his pencil on the floor.
About four years ago, I had my first recognition of my own compulsive behavior. On a flight from Little Rock, Arkansas to New York City, I learned that compulsions at 20,000 feet are rarely a good thing. As I sat in my aisle seat, buckled in and hoarding one of those tissue paper covered pillows, I found myself staring at the latch that held my tray table in place. It was the same color as my family’s first computer. And it was ever so slightly at a 98° angle. I found myself wanting, no, demanding that the latch be perfectly vertical. If I did not reach out and turn that cold, plastic latch to perfect alignment, I was certain that the plane would crash. My breath grew shorter and my body temperature soared as I noticed the two passengers next to me also had misaligned latches. I reached a boiling point, quickly fixing all three latches, my arm a speeding blur past their faces. One of the neighboring passengers gave me a strange look. The other had fallen asleep, still clutching his plastic cup of ginger ale. While I’m sure it was a means of coping with my fear of flying, it was the strongest compulsion I’d ever felt. My experience was only a hint of my brother’s pain. The anxiety I felt lasted mere minutes. For him, it’s a lifetime.
When my brother walks into a room, every single object has a voice that screams only at him. The sofa, the rug, the throw pillows; they scream indiscernible commands that all seem to say “Don’t touch me or you will die.” His fear of these objects and the perceived germs they carry cause him to stand in the middle of the living room, paralyzed with his palms pressed together at his waistline. It has become his standard position. He might watch an entire half-hour of television, standing in that very spot. We’ve gotten used to it. In the past five years, I’ve realized that some objects scream louder than others: door handles, light switches, cushions. But his interactions with some particular objects have provided stories that cause my family to laugh and cry years later. We have learned that objects designed to make our lives easier, prove disastrous for him. As his condition worsens, we have to take stock of these objects and adjust our own behaviors in the process.
Soda Cases
Though my brother still withstands a few public outings, my mother made a solo trip to the grocery store that day. Fulfilling my brother’s grocery list requires an eagle eye. No dented cans or scratched boxes. A particularly tricky item is the 12-pack soda case. Standing in aisle 14 with the hum of a row of freezer cases to her back, my mother’s challenge was to find a soda case in pristine condition, with its perforated handles not yet punched in, proving that no one’s hand has touched the inside of the packaging.
My brother loves the soda flavors that make your liver want to cash its last check — Diet Black cherry Pepsi, Diet Caffeine-free Vanilla Dr. Pepper. Choosing the best two cases, my mom carried them to the register. The polite cashier began making small talk (city population: 36,054) while scanning the items. Before my mom could verbalize a warning, the cashier passed the first soda case over the price scanner — Beep! — and punched her hand through the perforated handle — Pow! The sound was a gunshot that caused my mother’s shoulder to slump. After a brief, sugar-coated explanation, mom returned to aisle 14. She chose the least damaged of the few remaining soda cases and stomped back to the checkout counter where the patiently waiting cashier handled the soda cases with care.
“Oh I’ll carry those for you Mrs. Ellison,” the eager grocery boy said to my mom while bounding for the soda cases.
Pow!
His hands punched through before any objection could be made. Throwing up her hands and muttering to herself, my mom returned once more to the soda aisle and retrieved the only two remaining cases, one of which had a slightly dented corner. It was the best she could do.
The grocery boy held the new cases in his arms like a pair of newborn babies, following my mom to her car. He gingerly placed them in the backseat, ensuring the handles were in perfect condition. Mom drove the four miles to my brother’s house, a pink 3-bedroom under tall pine trees. His only roommate is Billie, a cat whose deep, soulful meow earned the namesake of the legendary jazz singer. Billie often walks around the sparsely furnished house, meowing at ghosts and spirits we can’t see. She takes particular interest in the bathroom.
After pulling into the driveway, my mother parked the car and waited while my brother retrieved the groceries from her backseat. He carefully scrutinized each item before taking them inside.
“This corner is dented in,” he said while staring at one of the soda cases that lay on the seat. My mom gave no response, only an exhausted sigh. He knew she had done her best. Lifting the case out of the car, he held it at arm’s length and rushed it inside. Because of that dent in the case, he would spend the next few hours washing the surface of each unopened can with hot water and soap.
Pillowcase/Laundry basket
When my brother was 16, he lost his hearing in his right ear due to an infection. It was a fluke, the doctor said. My brother was devastated. As his OCD grew from non-existence to crippling disease, he became more obsessed with anything that touched his ears. He refuses to buy headphones that have spongey ear coverings. The porous material is impossible to clean with rubbing alcohol. He also holds a disdain for iPod earphones because they must be inserted into the ear.
The combination of an ear and germ obsession results in daily laundering of pillowcases. We’re not sure why, but he prefers doing his laundry at my parents house rather than his own. He carries the laundry in a black garbage bag, clutching it tightly and never once placing it on the floor. On one winter’s afternoon, he pulled a few articles out of the dryer, carrying the heap in his arms through the kitchen, walking towards his bedroom. That’s when the pillowcase fell. The sound of it hitting the floor was thunder to my ears. He didn’t notice. This would be avoided if he could use a laundry basket, yet the plastic lattice work on nearly every basket sold translates to dozens of nooks and crannies for him to clean. Washing them upwards of 30 times a day, his hands are the only trustworthy receptacle for carrying clean laundry. After he went to his bedroom, I sat at the kitchen table and starred at that dark green pillowcase, lifelessly sprawled across the orange tile of our kitchen. It was Sophie’s Choice. Or Let’s Make A Deal, without the prizes or fun. I had a choice to make: put the pillowcase back in the dryer and lead him to think he left it there by mistake, or leave it right where it was. I couldn’t bear to lie to him. My legs turned to stone and I sat, knowing the consequences. He eventually returned to discover his error, muttering curse words under his breath. Our household suffered from a minor meltdown until dinner eased the tension. He could never use that pillowcase again. My dad has since devoted his free time to searching the internet for laundry baskets that can be easily sanitized.
Automatic Pet Door
Billie became an outdoor cat when she was six years old. Previously she had only viewed nature from the confines of an air conditioned house. She pressed her nose against the window, leaving streaks on the glass to succumb to Windex. My brother let her out to chase leaves and chew on ferns in the backyard. This didn’t bother him because dirt is clean. He doesn’t think twice about plunging his hands into soil. My dad took up gardening, elated they could share one father-son activity.
Yet as Billie’s outdoor excursions became more frequent, my brother grew more anxious about touching the door knob. After more internet research, my dad installed an automatic pet door that was triggered by a sensor on Billie’s collar. For OCD sufferers, automatic is usually a good word. An automatic object typically performs its function on its on volition. Though our 21st century lives are not as automatic as The Jetsons, many common objects perform tasks without requiring a physical touch. A cup of coffee or a quick vacuuming of the carpet can be completed without lifting a finger, thanks to automatic timers and computers. In a bathroom, we can flush, lather and rinse by waving our hands in front of sensors. However, most of this technology is found in the most avoided of all places for someone with OCD — public restrooms.
Billie’s automatic door was the perfect solution until the morning my brother awoke to find a white cat with slanted blue eyes perched on his nightstand. The pet door had malfunctioned, allowing Billie to bring home a new friend. My parent’s received a frantic call around 3 a.m., my brother in a complete state of panic. They stayed on the phone with him until he managed to chase the cat out of the house. He spent the rest of the night cleaning his carpet and nightstand, fearful of the invisible microorganisms the white devil might have left behind.
The feline harassment continued. The white cat snuck in to eat Billie’s food and claw at the wallpaper. The last straw was the day my brother came home to find the white cat urinating in his studio, ruining his canvases and paper. My mother had been recounting the saga to me through e-mail, stating that dad was going to take care of it. They searched the entire neighborhood for the white devil’s owners, but no one claimed it. I called my dad a week later and asked what became of the stray cat. “Oh, he’s a country kitty now,” he responded. I didn’t ask any further questions.
Menus/Tablecloths
Fifteen years ago, my dad converted our laundry room into an office for my mom. A row of white cabinets that once housed bottles of Tide and spot remover, now contain costuming books and folders exploding with medical histories. We’ve all had our problems. While my folder is quite thin (jaw surgery, flat feet), my mom’s is impressive (brain tumor, ruptured discs, nerve damage). Based upon appearances, we’re a healthy family. Just don’t look in those cabinets.
On the back of one cabinet door is where my mom tapes lists: emergency numbers, e-mail passwords, our history of cat ownership. Among these is a tirelessly edited list of restaurants, a jumble of typed and handwritten names. The list is a family archive of safe restaurants, that is, ones that don’t use tablecloths.
My brother enjoys going out to eat, despite the potential disasters that might occur. When we sit as a family, he lingers, standing over his chair, examining the seat cushion and table. One of his many mental, geometric calculations plays out in his head as he determines the quickest and safest way to seat himself without touching anything. To see him attempt to negotiate a tablecloth is heart breaking. As he eases into the chair, sweat forming on his upper lip, he uses only his index fingers to scoot the chair forward. He keeps a few inches between his knees and the tablecloth. The rest of us feign interest in the menu, unable to watch that small slice of his daily suffering. I’ve never in my life seen a worse prison.
The rest of the meal rests on a fence with the possibility of tipping to one side or the other. His shoulders never relax as he is, at all times, aware of the tablecloth and the patron sitting directly behind his chair. If another diner’s chair bumps into my brother, it’s nothing short of a planetary collision. He’s our own supernova.
One afternoon we were safely seated in a tablecloth-free restaurant when I learned of my brother’s latest compulsion. Sitting to my left, I noticed him flinching each time I turned the page of my menu. I decided not to prolong the issue and quickly selected a dish. Later I learned from my parents that each turn of the page created a small breeze that barely grazed my brother’s face. His disease had reached an all time high. My brother no longer had to touch an object to be painfully affected by it. That was the moment I lost hope for his recovery.
Now I continue living the life he should’ve had in Manhattan. As I stand on the subway platform, watching happy families fan their Playbills at each other, the hot breeze of the approaching F train hits my face and I know that my brother’s life will never again coincide with mine.
Coping With the Present
When I think of my brother all alone in his pink house, surrounded by the few objects he can touch, I can’t help but weep. We were best friends. He taught me about comic books, Chevy Chase and Prismacolors. Back when he could still touch a car, he drove me to rent my first Mel Brooks movie. Though his disease — as my parents remind me — is not my responsibility, I think of him every hour. I try to remember the person he was ten years ago, but now all I see is an empty boy, surrounded by things he can’t touch.
I feel an immediate bond with anyone whose life has been affected by OCD. I’ve attended several lectures on Universal Design — the process of designing for all, including people with disabilities. While Universal Design tends to address impaired motor skills and movement, I wonder if there’s a place for my brother in that conversation. As a designer, I know that it is impossible to consider every tiny percentage of each special interest group when creating a new product. Yet every year brings new technological advances that ease the daily anxieties of OCD patients. While the iPhone may not have been designed with OCD in mind, it’s the ideal cell phone for someone like my brother. A smooth touch-screen eliminates the hours my brother would spend cleaning between the cracks of a conventional keypad. Yet to design specifically for OCD patients is an improbable challenge. To create an object for someone who fears tactility and physical interaction is the sort of assignment that turns a designer’s world upside down.
I have just begun to consider the possibilities of designing for OCD, wondering if such such a process could result in at least the smallest amount of comfort for sufferers. To ease my brother’s pain, even for a mere five minutes, would be my greatest achievement. Now that I’ve begun to understand my brother’s daily anxieties instead of running from the pain it has caused my family, I’m beginning to think it’s possible.
For this essay, Chappell Ellison was the winner of an Education Award in the 2009 AIGA Winterhouse Awards for Design Writing & Criticism.
