Posts Tagged 'disability'

Thank You Henry Rollins for Your Offensive Comments About Depression and Suicide

Unknown(Reprinted from the Huffington Post)

This summer, Punk Rock icon, actor and writer Henry Rollins wrote a controversial opinion piece entitled ‘Fuck Suicide’ for the L.A.Weekly in which he viciously criticized those who commit suicide, including Robin Williams, who killed himself after a long battle with depression. “How in the hell could you possibly do that to your children?” Rollins wrote. “When someone negates their existence, they cancel themselves out in my mind. I have many records, books and films featuring people who have taken their own lives, and I regard them all with a bit of disdain.”

The article was shared 32,000 times on Facebook, and enraged thousands of readers who believed Rollin’s words showed a complete lack of respect for Williams and his grieving family. News outlets including the NY Daily News, Rolling Stone Magazine, Detroit Free Press, Washington Post, The Guardian and the Sydney Morning Herald also reported on the backlash. But he wasn’t the only public figure to comment negatively about suicide and those suffering from mental illnesses. The KISS bassist/vocalist Gene Simmons sparked outrage after saying he is “the guy who says ‘Jump’ to those who are suicidal.

Simmons then went on to imply that people with suicidal tendencies were attention seekers. He remarked “Shut the f**k up, have some dignity and jump.”  In response, several radio stations, including Power97 and BobFM in Canada declared that they will no longer play KISS music, as did leading Australian station Triple M – which owns five metropolitan stations across the country. After the fallout, Simmons also deleted his Twitter account to which he previously posted daily. Finally, last week So You Think You Can Dance judge and executive producer Nigel Lythgoe announced on the show that “committing suicide is both stupid and selfish.”

As much as I loathe all of these insensitive and offensive comments I am grateful that they have opened up an international dialog that is rarely that covered in our media and news outlets. However, amid the clamor, I believe that these public figures articulated some very real and strongly held beliefs that those who commit suicide and struggle with mental illness are weak, selfish and lack courage. That they should “pull themselves up by their boot straps” and “just snap out of it.” And that they don’t deserve our sympathy because “they did it to themselves.” I know that these horribly misguided comments are made over dinner tables, during happy hour and into cell phones because I have heard them. Most mental health professionals would agree that suicide is too often a result of mental illness.

There’s no “stupidity” involved when a disabling illness drives a person to take his or her own life.  The shame and stigma stat stem from these commonly held messages can cause a great deal of damage. Bruce Levin, psychologist and author of several books including  Surviving America’s Depression  wrote that people with mental illnesses “do not need positive-thinking or condescending advice, which assumes inaction stems from ignorance, creates only more pain. Instead, people need compassion, love, and various kinds of support.” In todays culture we hold our celebrities as up as role models, emulating their taste in clothes, music, homes, political causes, art, cars, food, reading material, and lifestyles. Their opinions are regarded by many to be the gold standard regardless of how ridiculous, misinformed or irresponsible they may be. These celebrities do not only echo public sentiment, they create it. Just consider Kim Kardashian and her empire.

However, most telling was how these three celebrities chose to respond to the public outcry against their insensitive remarks. Nigel Lithgoe took to Twitter and in three posts refused to apologize. He continued to blame the victims by saying, “I will not even begin to defend my feelings toward suicide. The belief that life is not worth living is wrong. Because a mentally ill person is incapable of judgement does not make the act of suicide any less stupid or selfish.” He also admitted that he has lost two people to suicide and perhaps his experience has impacted his misguided beliefs. It’s not for me to make this assumption. Rock star Gene Simmons has expressed regret in a Facebook message

“I was wrong and in the spur of the moment made remarks that in hindsight were made without regard for those who truly suffer the struggles of depression.” However, it was Henry Rollins’ reaction which surprised me the most. In addition to apologizing he also pledged to educate himself on the topic. After his original article, Rollin’s penned a follow-up titled, “More thoughts on suicide,” in which he took responsibility and thanked the people who sent responses.

“I appreciate them all because they were written with complete sincerity, even if some had only two words, the second being “you.” . . . I said there are some things I obviously don’t get. So I would like to thank you for taking the time to let me know where you’re coming from. None of it was lost upon me.” But then Rollins shared his own struggles with depression. “There have been some truly awful stretches, as I am sure there have been for anyone who deals with depression, that have at times rendered me almost paralytic.” Rollins wrote. It may seem appalling that he would make these derogatory remarks after suffering from depression himself. However, a research paper in the US National Library of Medicine entitled “Stigma as a Barrier to Recovery” noted the stigma may be so pervasive that “persons with mental illness may begin to accept these notions and internalize these stigmatizing attitudes and beliefs that are widely endorsed within society”.

Perhaps this was the case with Rollins but it wouldn’t be fair for me to make that conjecture. Rollins concluded with a message of regret and a commitment to learn from this experience: “I have no love for a fixed position on most things. I am always eager to learn something. I promise that I will dig in and educate myself on this and do my best to evolve. Again, thank you.” To be sure, there are many who believe that these all are just insincere apologies by celebrities who are interested only in protecting their image and endorsements. I do not know if Simmons or Rollins are being genuine. I hope so because people can change. I know it, in fact because I have.

It shames me now to admit that I once held similar misguided opinions about mental illness but this was before I got a Masters degree in counseling, before I worked with students in crisis at Northern Illinois University, Illinois State University and UCLA and before I lived with a decade-long diagnosis of major chronic depression. In other words I got educated, I learned and I changed. The concept that mental illness is a disease which twists reality and affects the way one thinks, perceives and remembers is one that is not often discussed. Blame towards the victim and a lack of understanding is what keeps so many alone with their secrets.

The World Health Organization estimates that one in four people will suffer from a mental illness at some point in their lives. That is too many people who must bear the stigma and the judgement of the ill-informed. I am proud of the mental health community and media outlets who stood to be counted by taking these public figures to task. As a result damaging misconceptions were exposed and more importantly relevant information about mental illness and suicide was shared with the public at large. The  good news is that a more open conversation about suicide and depression may be on the horizon in this country, as the indie film, “Skeleton Twins,” a movie with suicide and suicide attempts at the core of the story, won big audiences in its debut weekend in movie theaters across the country. It is my hope that more people will get educated, learn and change.


Into The Blue


Into The Blue
I flip the car visor to apply a slicker of raspberry. I’m so exhausted that I look like phlegm. But phlegm who’s wearing lipstick because everybody knows that lipstick can disguise anything. You never see any of those actors who play sick characters wearing it, not even if they are Angelina Jolie. It’s early and slippery outside, one of those days in Chicago when the fog feels like a permanent guest on the road. I move at a glacial pace. Sometimes one depression hour feels like a dog year.

Me, in another psychiatrists’s office. I keep my eyes to the floor like the guilty one on Law and Order. I am shamed. This is my Roswell 54. I’ve always prided myself on being a “happy, optimistic and motivated person.” I’ve even bragged about it but out of nowhere Depression just crept in through a basement window and I found him sitting there with his feet up on my nice, new mushroom colored couch and he decided to stay.

I took my first 2 pills. They were melon colored and shaped like kites and I felt like a teenaged girl waiting for her boyfriend to change his Facebook status to “In A relationship” because I wanted those meds to work and work fast. They didn’t. I tell no one about the black sinkhole except for Dan, my good and kind husband who guards the secret like it’s a magician’s trick. We both know that crazy and unstable does not get hired, does not get invited to fabulous parties. We both know that all crazy and unstable gets is judged.

Meds are added, taken away, tweaked and tweaked again. There are pretty little yellow pills, rainbow capsules and ones that look like teensy hotdogs. Another one make me feel l’m on a tilt a whirl and I throw up for 24 hours straight. Some work a little, some not. I don’t know. My brain skates the edge of winter-gray and presses at my brain.


INTO THE BLUE Arlene Malinowski

And then I just stop. Mail and magazines are left unread. Clothes with zippers and buttons and proper fit sit in the closet. The TV flickers like ghosts in the night. Phone calls roll into voicemail. The bed becomes both my shroud and sanctuary. I look into the mirror of the medicine cabinet. I’ve become invisible-even to myself. I wonder when is it time to find a new doctor? Until one day she says kindly; “I think we should wait to see if this lifts. Your body’s been through a lot. I don’t know what else we should try right now.” Six weeks later she moves away to a city that’s warm and sunny.

How are you? the question comes automatically from the mouths of others. “Fine, I’m just fine” I reply smiling, pink bubbly. A dozen years of acting classes, money well spent. In my soul, I dream about Sylvia Plath and Bell Jarring. I curse my electric oven. And then Dan does the unthinkable and betrays me. I hear him in the other room on the phone, “She’s clinically depressed. It’s bad. We need to get her into see someone now.” I panic, “What are you doing? I was just having a bad moment.” He holds me, “I had to tell someone. I’m scared for you”

My head is spinning lurid purple. “Don’t you understand they’re going to tell everyone!” He doesn’t listen. There are phone calls to brothers and friends and colleagues and I’m in, right away with a guy who is not taking new patients. They say he’s a rockstar but I don’t care. Now the whole family knows. Screw them.

I look around the waiting room. I feel like I’m sitting in the middle of a pharmaceutical Burning Man. The patients rock and mutter and sweat and tremble and stare glassy eyed and get up for cups and cups and cups of water. These are the last chance people and I am one of them. There is a place in your mind that is so far down you don’t see color. That’s where I am.

We wait for 2 hours and when we finally get into his office it looks like a bomb hit it. There is stuff everywhere, it feels like the inside of my brain. He looks nice, like the kind of guy that you should have gone out with in college instead of chasing the bad boys who would make out with you at a party and then dump you for a girl named April- at the same party. I hand him the history that Dan so meticulously kept and I tell him the dark side of calm. “The gnawing at my brain is relentless. I can’t do it anymore. I want go to sleep and never wake up again.”
Dr Last Chance leans in, connects with me my eyes and says in a low quiet voice;

“I know you’re in pain but you need to know that we have lots of options to try.” and then starts naming off lists of drugs and drug combinations. When we are leaving I throw my arms around him and hug him hard and he hugs me back.

Hope is a great gift- maybe the best of all gifts and that’s what he gave me. I slowly start to come out of it. Depression like mine doesn’t just go away, it leaves quietly and surreptitiously like the honey colored light at dusk but word about my break down spreads quickly and at full tilt. I am humiliated beet red but the most unexpected things happen. A funny card shows up in the mailbox. A hand reaches out. The kind opportunity to teach a class if I felt up to it is offered. And people whisper to me “Me too! I have it too” and I wonder “why didn’t I know this about you? Why didn’t we know this about each other? It would have made everything so much easier.” But these timid, tentative and big-hearted acts of care surround me. I swallow my fear and I recognize that loosening the shame and releasing the secret into the blue- saves me.

NOTE: My one-woman show  “A Little Bit Not Normal”  A serious comedy about depression-  Spring 2014.  This Blog, the show, talkback sessions, community writing workshops, articles in Huff Po, publications & the book- is part of my initiative to become part of the national conversation around mental  Illness.  Kickstarter will be launched later this year.  I hope you’ll join me- because its 1 in 4 of us suffer sometime in our lives- and much of that time it is in silence.

Kicking the Habit

985C1E54Kicking the Habit

I grew up in Paterson, NJ.  It was a tough neighborhood where the second graders cursed, the nuns smoked and the dogs snarled.  But the most feared group in all of Paterson … the ones who terrorized children … the ones who promised that retribution would be swift and merciless …  was not the Jersey Mob but the Jersey Moms.  And we all understood that you could never go against The Family.

In our neighborhood, every mother made it her business to make sure that every kid stayed out of trouble.  Mrs Koos, down the street, was forever yelling from the stoop “Jesus Christ hanging on the cross, you’re gonna get hurt doing something like that!”  When Stevie and Alfie’s Mom, who regularly wiped dirt from our faces with a spit-on tissue, would catch us misbehaving she would get eye level, shake us or hit our butt and hiss, “Don’t let me catch you doing that again.”

Mrs. George could break up a fight just by barking, “Hey you, come over here and sit until I tell you to get up”.   However, she sometimes would give the offender a snack if they looked like they were truly sorry and promised not to do it again. So, we all learned how to play her.

Occasionally, the Jersey Moms would get into it amongst themselves over who hit whom first, but for the most part, they were loving and fair with us all of us. The other Mothers were like that.  It didn’t matter, Catholic, Protestant, Jewish, Irish, Italian or Puerto Rican, the Jersey Moms all operated the same way except for mine.  Because my mother was Deaf, the hearing world was one she didn’t live in. It was one she didn’t understand and a world that didn’t understand her.

In the Deaf community, Mommy was popular, quick with a joke and unselfish with her empathy.  At home, she was strict and punished us regularly for being disobedient, but she never stepped in to reprimand someone else’s kid because her inability to hear made her uncomfortable and timid.  She also never stuck-up for us when another Mom falsely accused us of a crime we didn’t commit.

It’s not that she ignored trouble.  If someone fell off of a bike or was throwing asphalt like the Bell kids across the street often did, she would quietly try to fix the situation with a small wag of her head, a silent hug or a wave of her finger. No screaming or punishment was ever involved.  And because she could only rely on her sight to catch the trouble makers, they often got away with murder when my she was around.  It was embarrassing knowing that everyone in the neighborhood thought she was a pushover.

We belonged to St Brendan’s Parish where I also went to school.  We had always been a devout family.  We went to mass on Sundays and everyday during Lent.  We went to weekly confession on Saturday afternoon which really threw a wrench into playtime.  We fasted and abstained on the first Friday of the month, said Novenas and lit candles.  Crucifixes, statues of saints, pictures of heaven and hell, Bible storybooks, pope mugs (which we were not permitted to use), and rosary beads crowed every available space in our house until it looked like a religious garage sale.  My parents wanted to make sure there was an early warning system for those times we were thinking about committing a sin. The only thing that was missing was an angel in our bathroom to protect us while we were peeing.   My parents believed they had three financial obligations: rent money, food money and money for the “suggested donation” at church.  Everything else came second.

I loved going to my Catholic school.  I loved the gray plaid uniform with its matching beanie.  I loved all of my subjects, and not only did my homework but all of the extra credit too.  I loved the maps that pulled down from the ceiling, smell of the blue disinfectant and the echo of footsteps when you were the only one in the hallway.  I couldn’t wait for the school day to start so I could say the Pledge of Allegiance, read out loud, and pray at my desk.  I especially loved the pencil sharpener that attached to the wall, and our janitor Mr. Malzone who smoked cigars in the school and had one eye that bounced around like superball. I was taught to work hard, pray hard and respect God, the teachers, and my parents, in that order.

One morning, when I was in the fourth grade, I asked Mommy to write a note for school.  She replied by kneeling and tugging up my knee socks which were always poodling around my ankles. “Mom, stop! Don’t,” I signed, before explaining my request. “They want volunteers to work bingo.  You can’t hear the numbers and I know you don’t like going to school, so I need an excuse.”  Mommy leaned back on her heels and signed back,  “I always so much nervous going your school. Your teachers hearing and smart. Maybe I no understanding them but if it’s important, you know I go.”  She smiled and went back to grooming me.  She was always doing that like the monkeys I saw on Wild Kingdom, except she didn’t eat the nits.

My school was always looking for parent volunteers and Mommy did her part by making cupcakes for the bake sales or crafts for “Brendan’s Bazaar,” but I knew from experience that anything requiring her attendance made her uneasy, so I never brought up being a lunch monitor or chaperone.

Another reason I never asked Mommy to volunteer was that she had a part-time job.  It was the 1960’s and all the mothers we knew stayed at home. Our family didn’t have the luxury of relying on only one paycheck, so Mommy took a job from 9:00AM until 3:00PM at the Maryknoll Catholic Missionary Magazine managing the subscriptions.  I knew Mommy’s job was my parents’ secret shame. I was told not to tell anyone especially the teachers because, “It’s no their business.”  However, I always suspected my parents they didn’t want people to think that we were Deaf and poor.

A few years before this, my Mother and I went to my second-grade parent-teacher conference without my father, because he was working the second shift.  Although he was also Deaf and never used his voice outside of the house, he was handsome, affable and comfortable with putting hearing people at ease.  He would smile warmly and look people in the eye.  Sometimes, he would pantomime a compliment, like. “Wow, look at this kid, he’s so big,” or, “This car is the best one made,” or, “The food was so delicious, I will have to waddle home.”  My father would shake people’s hands or pat them on the back or take out a pad of paper to write, so my mother often relied on him to break the ice with strangers.

I didn’t feel nervous that night without my dad at the conference. Being the hearing child of Deaf parents, I did the kinds of things that many first-generation kids on my block did for their immigrant parents: made their phone calls, corrected their correspondence because English wasn’t their first language, and negotiated the parts of their life connected with the outside world.  I was a shameless show-off, so I enjoyed taking care of things and explaining whatever my parents needed to know.  When people would compliment me or give me the occasional cookie or quarter for being such a, “Good girl,” it always made me feel smug with pride.

Before this parent-teacher conference, I had handled these types of transactions on a small scale … explaining at the car repair shop and the bank, ordering at Pizza City and the deli or calling Granma to let her know we were making the two hour drive to visit. So, the night of the conference, I figured if the teacher decided not to write everything down, I would be doing the talking.

When we got to the school, my classroom looked so fancy, decorated with streamers and the glittered posters we had been making for days.  Mommy bowed her head at the crucifix as a sign of respect and wandered around the room carefully inspecting each piece of artwork, waiting until all the other parents had left.  It was only then that she ventured to the front of the room with me.

“Mrs. O’Keefe, this is my mother,” I said.

Mrs. O’Keefe’s had her gray hair was all done up and she was wearing a pretty blue dress and a gold circle pin I had never seen before.  She smiled kindly, looked right into Mommy’s eyes and shouted, “WELL HELLO! NICE TO MEET YOU!.”   Mommy lowered her eyes, and using her Deaf voice, she whispered.  “I’m so nervous to meet you.  How is Arlee doing in school?” She smiled shyly, and then suddenly, awkwardly, remembered to put out her hand to shake.

I wondered what Mrs. O’Keefe would tell her?  A few times I hadn’t finished my arithmetic because I was dilly-dallying, and once she made me clean out my sloppy desk in front of the whole class.  In addition to the jumble of paper and books, elastic bands and chewed pencils, I found an old sandwich smashed in waxed paper.  I wasn’t worried though because I made sure that I hid the sandwich in the trash before she  could see it, and I always got good grades.

I looked at Mrs O’Keefe, “My mother wants to know how I’m doing in school.”  She nodded her head generously and talked in her regular low voice, “Arlene is a very good student.”

We were used to people yelling around us, and I took it as a compliment that they were trying to be nice, even though they did look like idiots.

Mommy watched me intently as I confidently signed.  “I am a very good student.”  She smiled.

Then Mrs O’Keefe said, “She’s a very smart little girl.”  My hands jabbered with joy as I signed, “She said I am very smart.”  This was a coup.  Mommy would let me stay up late and she would brag to all her friends.  Then Mrs O’Keefe  lowered her voice, looked over the tops of her glasses and said, “But she talks entirely too much”.

My thoughts whipped around like a pinwheel in a hurricane, and magically, my hands took on a lie of their own.  I suddenly found myself wordlessly signing, “But the boy behind her talks too much.  Mommy and Mrs. O’Keefe looked at each other, nodded their heads in agreement, exchanged knowing glances and timidly shook hands goodbye.  Crashing through the double doors into the night, I felt like I had just discovered my super-power: the power to hide the truth from my parents.

I didn’t feel that I was being deceitful, exactly. After all, I was Catholic and I knew I could go to hell but I didn’t want my parents to worry so I did my best to protect them in just like I was going to take care of this Bingo situation.

“No, don’t worry about it, I signed to Mommy. “We’ll just write an excuse.  It’s not a big deal.”  Mommy first took out the scratch pad so we could figure out what to say, the two of us weighing each word, crossing out and starting again.  We decided that the best tactic was to say that she simply had another appointment.  That way, we didn’t have to explain about not being able to hear the numbers and the working part-time because it was, “No their business.”  Mommy copied the note onto nice manila paper, signed it with a flourish; Sincerely Yours, Mrs. Dorothy C. Malinowski, folded it, dropped it into my book-bag, (which also was always a mess and harbored many stale, fugitive lunches) and kissed me goodbye.

That day should have been the happiest moment of my fourth grade existence because it was the day that Jan Mascellino, the most popular of the “Populars” picked me to be part of her group.  Everyone knew that being part of the 6 Girl Army of Cool had its advantages.  They had an all-access pass to the front of any line.  They dictated fashion trends like how the beanie was to be worn.  One year, they decided it was cocked to the left, the next year back onto the crown of the head. The Populars ascribed the ranking of everyone in our grade, and had first dibs on the boys they would cheer for during gym.  I always got John Perragallo a mid-level kid who was smart, nice and had a head the size of a basketball. I could do worse.

Huddled together and squirming like kittens on that sunny but brisk Thursday, Jan’s clique was having another one of its infinitely private and enviable discussions when she looked up, sighed disgustedly and said, “Arlene, come here. We need you to even up the “Mummala-Cummala line.”  Me, included with the Populars?  I was elated at the unexpected miracle from a benevolent God in the parking lot/playground/loading dock of St Brendan’s school.

Mummala-Cummala was a call-and-response song accompanied by dance steps and snapping fingers.  Two rows of girls would line up face-to-face in equal numbers, the first row, dancing and singing “Mummala-Cummala, Cummala-Veesta,” followed by the second row of girls who would repeat, ”Mummala-Cummala, Cummala-Veesta,” followed by the first line of girls singing, “Hey Nonny, Nonny La-Veesta,” and so on and so forth.  This eight-line, call-and-response would then be repeated thousands of times by dozens of uniformed girls every day before school, during recess and on the way home.

I didn’t run with this clique and was never asked to participate, but today the beautiful Maureen Miller was absent, so there were an odd number of girls. They needed someone to even up the line. This one-day-only entrée to the Populars could change my life.

Occasionally, Maryann Rodzen, who lived next door to a Popular, and I would let ourselves fantasize about becoming a permanent alternate, the “go-to-girl” in case someone was sick or hurt or dead.  However, we both understood that we could never be gifted with a guaranteed spot because the caste system had already been pre-determined by the time we were in the first grade.

Jan only had to murmur her request. That was all the invite I needed, before I  flung aside my book-bag  and ran over to the cool girls as if I’d always belonged.  We were only a few minutes into the singing, dancing and snapping when I felt a looming over my shoulder and heard the familiar clickety-clack  of rosary beads.  I looked up to see that it was Sister Mary Concepta, the meanest nun the whole school, who had stopped me. “Miss Malinowski, You left your book-bag in a pedestrian zone and I tripped over it.  I could have been seriously injured were it not for the graces of Almighty God.”  Her dry, bony hands were grabbing my ear, pulling me across the playground.  She sat me down hard on the steps, and I tried not to cry.  Watching from the sidelines, I didn’t know which hurt more, my pinched ear or the mortification. But one thing was clear, I was destined never to “Mummula-Cummala” with the Populars again.

Sister Mary Concepta was about hundred and ten years old and had been dying of cancer for decades, but everyone said that she would live forever because she was so mean that not even God wanted her.  She was one of those nuns whose beady little eyes roamed the classroom all day for another victim; someone too fat, too stupid, too poor, too weak or too different. Then she would break them, all in the name of the Good Lord, of course.  It was Catholic School Darwinism, at its best.

I had become the bacteria in her microscope, and there was no escaping.  Everything I did was scrutinized and magnified.  If I accidentally dropped my ruler, she’d accuse me of doing it on purpose, and I’d get a whack on the palm–with my own ruler.  If my work wasn’t perfect, I was sent to the board to do it over and over,  each time getting a huge X drawn through my answer in chalk until it was right.  Flying erasers often found my head, and the living daylights were shaken out of me until I felt like a milk shake in the blender.  Sister Mary Concepta, who looked like a raptor in a black and white habit, became my own personal drill sergeant.  After only a few weeks, I could hardly lift my eyes from my penny loafers, and the Populars had shunned me, tittering loudly whenever I got in trouble.  Populars are like that.

I never knew when, where or how Sister Mary Concepta was going to swoop down like a crow to peck my eyes out, but I knew that she would.  The other kids couldn’t help me, because then they might get it too.  Bullies are like that.  But the worst part was the shame and the fear that walked along side me where my guardian angel was supposed to be to be.  I had become a puny, anxious nerve-bucket.  Once in a while, there would be a kid who might give me a little smile or sneak to help me pick up my lunchbox and check my thermos for broken glass, but most of the time I was alone.

One day when the entire class was talking, Sister pointed to me and said, “Miss Malinowski, in order to exonerate the class for talking, stand in the corner like Christ on the Cross.”   It was the first time I had ever heard of this type of punishment, so I didn’t have any role models, except Jesus, of course.  The class froze. The jibber-jabber stopped, as I stood in the front of the room underneath the crucifix which was positioned in between the map of New Jersey and the loud speaker.  I glanced up at the cross to study it.  It looked simple enough.  I stretched out both of my arms, crossed one foot over the other, and then debated.  “Should I do the head or not?” The pull was irresistible.  It’s true that I wanted to be authentic, but I also wanted to be funny.  I wanted her to know that I could not be broken, so I cocked my head down and to the right and made the sad Jesus face.  The class laughed, and I realized that there was one silver-lining to the whole situation.  I was fast becoming a celebrity with the boys at school for being able to take it and not cry and I was a girl.  You couldn’t buy this kind of PR in grammar school, where the popular boys had more sway then the popular the girls.

But in the end Sister Mary Concepta was wearing me down and I tried everything to fix it between us.  Everything from writing a note of apology, to carrying her book-bag to the convent. I even tried praying Mary and for the intercession of the Saints to help me out.  But in the end, nothing worked, and I knew I couldn’t tell my mother.  After all what could she do?  She was Deaf .

The crazy dream started soon after that.  It was always the same. I would be at Nash Park swinging so hard I felt like my feet could kick the blue out of the sky.  My parents were pushing me as I closed my eyes, faced off with the sun and jumped.  WHOAAA!

I would land and tell my parents I had to go to the bathroom. They would wave me off smiling and as I walked across the playground woozy from the swing to heaven,  kids would suddenly surround me, running and laughing, screaming and playing.   When I squinted my eyes, they all looked like a bag of jellybeans being shaken.  I’d feel happy as I considered what I might eat later at the Hot Grill across the street.  Maybe I’d order a “hamburger all the way,” with the brown, hot sauce or maybe French fries but never both.  We couldn’t afford it. I’d walk into the damp, smelly bathroom where the cool felt good on my skin and my eyes would start to adjust to the darkness, when I’d feel a brick of fear smash into me, realizing what was about to happen.  I’d start to suck air.  “Get Out” my guts warned me. Every muscle strained as I felt like I was running in quicksand.

“Nooooo!  Come back!” I’d holler, as I ran out of the stone building and turned the corner.  But it was already too late.  Everyone had left.  Everyone had left Nash Park.  I heard the gate shut and the chain lock.  Just beyond the gate, everyone was leaving.   Beyond the gate, I’d see the back of Mommy and Daddy’s heads walking away from me, leaving me all alone

“Help me,” I’d shriek, knowing they couldn’t hear me, but I’d keep screaming anyway.

My heart hurt with every step they’d take.  I’d smash my body into the grate of the fence and try to will it through the metal. All alone in Nash Park, that’s when I’d sense them.  They would come for me like they always did.  I’d hear them bray, hiss and spit before I would see them: The llamas.  Hundreds of them would approach from behind the bathrooms, from under the swings, from the monkey bars and the dug out.  I could feel the ground shiver behind me as I started to climb the fence.  The sun would become blinding, and sounds would get louder and louder as the llamas came closer to take me.

Then I would wake up in my bed, sweaty, breathless and breathing .  After a while, I would get up to go sit on the floor of our dining room. There, the light of the red and green neon sign from the White Leaf Cleaners streamed in through  the window and it always calmed me.

The troubles with Sister Mary Concepta and the dreams kept going until it happened: It was a sunny day at school.   Sister Mary Concepta called to me, “Miss Malinowski, you are a disgrace to God himself.  Why didn’t you complete this bingo form as instructed and write down your phone number?”

Standing up at my desk, as was the custom to show respect, I replied, “We don’t have a phone, Sister.”

“You don’t have a phone! She wheezed like an accordion.  Miss Malinowski, you are the Devil’s lie box.”

I imagined a gigantic package festooned with red pitchforks and Satan horns that held every untruth I had ever told.  Sister peered so close, I could see a few  hairs the color of dust escaping from her veil, which  answered the question we had all been wondering for years; Oh my God, nuns did not shave their heads.  They were not bald.  It was a shocking revelation on the same level as unlocking the 3rd secret of Fatima.

Sister Mary Concepta continued to stare.

“Sister, I’m not a Lie Box.  My parents are Deaf and that’s why we don’t have a phone.  We use the one at the candy store.”  I was being honest although it felt like I wasn’t telling the truth because I had the “Lie Box” picture stuck in my head.

“Oh right, your parents are the deef and dumb mutes.” She paused and mused for a moment.

She’s taking pity on me, I thought.  I should have used this Deaf thing a long time ago.  Of course.  I suddenly saw all of my problems being carried away by happy little bluebirds like in the movie Snow White.

Then, rolling her beady eyes to heaven, she sighed, “Well, I should have known.  How can I discuss your conduct problems with your deef and dumb parents who can’t talk?”

Something inside of me exploded. “There’s no such word as DEEF, my parents are Deaf and just because they don’t hear, doesn’t mean you can’t talk to them.”  Then under my breath I added, “They’re not the ones who are dumb around here,” even though I knew better.

“Once again, you’re as bold and brazen as brass, spat Sister Mary Concepta.  “Kneel at the crucifix and think about your sins. I don’t know what kind of heathen parents would bring the sinful likes of you into the world.”

Time both expanded and collapsed as I saw myself getting expelled from my favorite school.  But, I quickly rationalized, that if I end up going to PS 25, at least I could wear culottes and sneakers.

I knelt down and stared at poor Jesus hanging there on the cross, and for the first time I broke down and cried.  I cried all through school and all through detention.  Eying me, Sister Mary Concepta exhaled, “Go ahead Missy, cry me a river”.  She seemed tired too.

After I was finally dismissed, I picked up my book-bag and cried all the way home.  When I got there, Mommy was on her hands and knees next to a pail of water laced with Mr. Clean.  I knew she couldn’t hear me and didn’t want to scare her so I stamped on the old wooden floor so she could feel the vibrations.  She saw me in the doorway and with her rubber gloves still on and said “Arlee, what’s the matter? Why you cry?”  Normally, watching her sign with big, fat yellow cleaning gloves would make me laugh like crazy, but not today.

“Nothing.  Don’t worry about it,” I signed.

“I’m a mother. I can help you.”

“You can’t do anything!  You’re Deaf! So leave me alone!”

My Mother’s hands darted fast and hard, “Arlee, if you don’t tell me what’s happening, I go to the school right now.”

Everyone knew that there was no fate worse than having your Mother show up at school getting all involved.   It would be horrible having to watch Sister Mary Concepta vaporize her.  Or worse, having my mother side with Sister.  So I gave up.  “OK Ma! I’ll tell you!  You can’t go to the school. I’ll tell you.”

And I did tell her, about the Populars, “Mumumala-Cummala”, the book-bag, the ear pulling, the shaking, the yelling, the hanging like Jesus, the lie box.  I told her everything.

“Come here,” Mommy signed as she hugged my head.  “My poor Arlee.  Mommy will take care if it. Put on your coat.”

“No Mom!  Just leave it.” I begged.

But Mommy didn’t listen, and it wasn’t because she couldn’t hear.  Mommy marched the four blocks to the convent, her blue sweater flapping furiously in the wind like the wings of an angel with me dragging behind her.  “Wait! No Ma, Please!”

When we got to the convent, I could smell dinner coming through the door, and I knew this was a bad idea.  I pulled on her and smiled through my panic, “Don’t worry about it.  I’m better.  I can take care of this myself.”

Mommy bent down to my height and mouthed, “I take care of it.  Finished.”  And for a sliver of a moment I saw her head pull back in hesitation before she rang the doorbell.  It chimed loud and low and long, and after an unhurried minute, I heard the latch unfasten.  My heart was pounding in my chest as the door slowly opened and there standing in all of her meanness, was Sister Mary Concepta.  She smiled as if she was waiting for us to drop by and have some cake and coffee. She started to speak, but Mommy cut her off, looking her straight in the eye, “Sister, I no care if you’re teacher.  I no care you if you’re big shot hearing nun.  I no care you think I’m dumb because I’ma Deaf .   This is my daughter, you no touch her.  You no talk fresh mouth or you be sorry.” And then her eyebrows shot up as she added, “Sister, I think you’re little bit not smart because God no like mean nun.  Oh-no!”

For the first time in my life, Sister Mary Concepta was absolutely speechless, and I never loved anyone as much as I loved Mommy in that moment.

“Come on Arlee. Time to go home.”

To this day, I try to imagine what was going through Mommy’s head to give her the courage to stand up to everything she feared. Because after that day, the day that Mommy roared, and the angels sang, things were different for me at school. I felt like I was in the center of a Deaf world that loved me, listened to me and protected me.  Mothers are like that.


My Deaf Mother flips down the visor and studies her face in the mirror.  She is wearing her post cataract surgery sunglasses.  They’re the cheap, plastic kind that wrap around your head to seal out the light and seal in the dark.

“I look like Movie star”, she muses.

“You do, Mommy”.

The traffic moves like an old man getting up from a nap and we are driving into the eye of a perfect storm.  It’s a Wednesday afternoon which means the stores in the area give a discount to anyone over 65, which includes everyone in Holiday City, a retirement community of ten square miles of the same 6 houses differentiated only by their lawn ornaments.  My parents have lived here for twenty years along with a set of gnomes, a twirling pinwheel and 3 fairies that poke out from the shrubs. These are the shrubs that my father manicures in the front yard with a pair of kitchen shears so they are perfect.  He likes to use a level.

I am driving my father black 1987 Mercury Grand Maquis, it is Jersey after all, and we creep/roll/inch/ along route 37 East which intersects exit 82 of the Gardens State Parkway.  It the main thoroughfare through Holiday City and it is the only road into Seaside Heights, Seaside Park, Point Pleasant and Long Beach Island.  It is July, it is sunny, it is Senior discount day and I am on the only highway to the Jersey shore.

I glance over at Mommy who sits on the edge of the seat bolstered by a car pillow looking like a chubby origami bird.   She closes the visor shut with a raised, penciled-in eyebrow.  The snap says, “Damn you Arlene, you never listen to me.”

The stop and go traffic lights are every few blocks and at the entrances of Sam’s Club, Walmart, Rosata’s market, Panda Palace, Burger King, the community hospital, the grey medical building, the blue medical building and the brick medical building.  I bear down on a yellow-turning-red light and Mommy throws her arm across my chest to brace me.  The old don’t drive like this.  They are slower, more mindful.  I am angry and in a hurry to go nowhere fast.

Mommy raises her penciled eyebrow again. “We should leave more early.”

“It’s only 3 miles away.”

“You never know, I no wanna be late.”

“We’re fine, Ma.”

“I like early.”

“I know.”

“Maybe we miss the doctor.  Then what happen? ”

“We’re almost there.”

“You can’t fool around with the doctors.”

“You’re right.”

Mommy readjusts her sunglasses.  “I got glasses free.  I like.”

“They were not free.  You paid for them with the surgery, believe me, you paid for them.”

“It’s wonnerful, I can see everything.”  She says as she leans forward towards the windshield to look at the sky.

“Operation yesterday, today I can see.  Unabelieve.  Almost is clear 100% but still blur a very little.”  She points to her eyes and then gently rubs her splayed hands against each other in front of her eyes, the sign for hazy, unfocused.   We’re stopped and I am grateful for a red light because I am having difficulty shifting my gaze between her hands and the road and I realize I am out of practice.

Deaf people can drive and have full conversations, arguments even with everyone in the car, the back seat included.  Their eyes dart attentively between the rearview mirror, the road in front of them and the hands along side of them.  Daddy’s never had an accident in 61 years and in the one accident that Mommy’s had she was in a parked car.  Their insurance rates are amazing.

The traffic light changes and the car lurches forward.  It’s got a hare-trigger gas pedal that I’m not used to.  I am not used to a lot of things these days; blowing out 53 candles on the carvel ice-cream cake, my parents moving from our house on Buffalo Ave, living though another Chicago winter.  “Sorry” this car is different from mine.” my hand quickly signs.

A year ago my sister called and said that Mommy was wearing shirts with food and stains and when she tried to ask about it Mommy got defensive.  I didn’t give it another thought because Diana and my mother were always quibbling over this and that.   But when I went home for Christmas the kitchen counters were a mess, there was dust everywhere.  When I went to go clean it she would snip “Arlee, Why for you clean again?  I just did”.

“Look, Mom, it’s dirty.”

But she would shrug and turn away, a physical punctuation mark to let me know that “conversation over”.

“I no see nothing. You too much fussy.”

Nothing could be further from truth.  She was the fussy one.  My mother could keep house, do laundry, check homework, be chaufeur and make homecooked meals while holding a full time job.  Yes, Mommy was 83.  Yes, she had stenosis that gave her back troubles.  Yes, she had trouble sleeping but I knew she hadn’t slid into the abyss of old age.  Up until that point I had never allowed myself to.

When the opthamologist told Mommy that she had cataracts she balked by saying that “I see fine. doctors try steal money from old people.  I know their way”.  Later, she confided that she was scared to have the surgery because she was Deaf and didn’t want to be blind too.

“You know blind worse than Deaf.”.  I told her, “Mom Helen Keller said that blindness cut her off from things, but deafness her off from people”.  My mother made a face and said, “She no know what she talk about” and left it at that.

Prepping for the surgery, with the exacting and demanding schedule of eye drops every hour, was more difficult than the surgery itself.  Although the mere thought of staring into a blinding light while a laser peels away your cornea was enough to make my stomach blerg but I kept my trepidations to myself .  Daddy teased Mommy about divorcing him when she saw how he really looked.   After interpreting and getting Mommy situated, the surgery it was over in less time than it took me to read the old People magazine in the waiting room.

The surgi-center itself was sterile and austere and surprisingly deviod of color.  I didn’t know if it was just bad decorating choice or purposefully designed so the office wouldn’t be too overwhelming to the newly sighted because Mommy was speechless when she realized what the world really looked like.  “Unnabelieve”

In the car while I’m yielding to the GD cars coming out of the  GD I Hop parking lot Mommy shakes her head in disgust.

“You never listen.  You no know what the traffic is.  I know because I live here.  You want too much your own way.”

“You’re right, I was wrong”,  I say taking a banana out of my bag.  It occurs to me that it’s probabaly not a good idea to drive, eat and sign at the same time but I’m hungry.  Mommy senses this and peels it half way and hands it to me.  As I reach for my breakfast, I see them out of the corner of my eye; a jeep full of girls wearing bikini tops and the long-legged swagger of youth, and I am reminded of that summer.

It was the summer of fervent anticipation, five best girlfriends, and a rented house down the shore.  It was having a drivers license, a job, scorching tight jeans and our freedom.  It was the joy of being lifted by a lazy wave, the lure of being pulled by an undertow as powerful as first love and the sting of a shaved bikini line in the salty surf.

It was the summer of Sun-In and lemon juice that made blondes turn golden, redheads turn penny and brunettes turn orange.  It was the blistering looks from skittish mothers as they dragged their children away from the melee.  It was the silent exchange of smug glances at the women we vowed never to become.

It was the summer of surging beer shots and bong chasers, sleeping three to a bed and tiptoeing through a houseful of dozing bodies to make the noon shift at Maruca’s Pizza Parlor.  It was nursing sun burns, sand burns, whisker burns and rug burns with community tubes of Neosporin and aloe-vera.   It was letting ourselves be swept away by the endless flirting, the public make-outs and the sloppy breakups.

It was the simple, secret belief that we all would be young forever.

Mommy looks over at the girls, then back to me, takes the banana peel and puts it into a tissue.  “That was you a long time ago.”


“Me too”.


I watch her adjust the arm of her wrap-arounds where they bite into the soft skin above her ears. She sighs,

“Nothing stay the same.  Everything change.  That’s what life mean.”

“I know Mom.”Image

She smiles at the girls who bounce and sing along with Ke$ha’s, We R who we R and murmurs. “Unabelieve, I can see.  Almost is clear 100% but still blur a very little. It’s wonnerful.”

She tilts her head thoughtfully,

“Next time we should leave more early.”

Deaf Club

People say that it takes a village to raise a child, I say, it take a Deaf Club to raise a CODA.  I grew up the hearing child of Deaf parents.  When I was born, the Deaf community rejoiced, the neighbors speculated and the extended families worried.  “Don’t teach her sign language or else she’ll never learn how to talk”, my Aunt Jane warned again and again.  But Mommy and Daddy trusted their instincts and the first sign I learned was milk; my 2 fists rubbing up and down on each other as if milking a cow.  Mommy still boasts, “Nobody thinks that Deaf can raise a hearing child.  But my daughter could and sign and understand perfectly when she was nine months old.  You that know that hearing children don’t talk until they’re two years old.  You tell me.”

The New Jersey Silent Club was an old storefront with N.J.S.C. carefully painted on the picture window in gold and black letters.  When my parents and their friends pushed open the heavy, wooden doors they were no longer the “Deaf one”.  They became Samuel the machinist, Lucy the flirt, Joan the mother of five, Bob the drinker or Flo the club accountant.  Deaf club was where Mommy fell in love with Daddy, where Daddy played penny poker most every Friday night, where we celebrated our holidays, watched subtitled movies on a giant sheet tacked to the wall and where I could go to the bar and get a cherry coke for free because I had a tab.  It was our union hall, our classroom, our corner tavern.   It was the heart and the soul of the Deaf community where I was petted and spoiled by people who didn’t think of themselves as disabled or broken.  They believed that they were just another culture with a different language.

Whenever I meet a Deaf person in a Starbucks, or on the El  we talk and connect like we are part of the same family, the same tribe.  And I always feel like I’m back at Deaf Club.

Arlene Malinowski

Aiming For Sainthood- excerpt

And then it’s New Years Eve.  A time when we atone for our sins, and start again.  I think a lot about amends and resolutions and about the time when I will have to choose my ½ of the magnets.

And I know that we are all bound to each other by a sticky web of history and grudges, debt and love and love and love. This experience has become a bookmark in my family’s story and this experience has healed me forever.  I have become a better daughter.

I never found my Springsteen poster but sometimes it’s good to leave the past behind.  But I also know that he’s a guy from Jersey, who got outta Jersey, who is still connected to Jersey- just like me.

On New Years day we all walk to 9:15 mass at Saint Brendan’s and I realize that perhaps the best way to start believing in God is to start searching for God.  And maybe, just maybe that’s the miracle. As I hold Mommy’s hand on the way to church I remember that as babies we all were rocked to sleep by our parents talking hands.  Excerpt From solo show- Aiming for Sainthood