Emotions are mysterious. Laughter can come from disappointment, tears from joy. Whatever the source, we know it is better to express our emotions than to mask them. Hopefully what we express will ultimately heal rather than harm. Here’s a sampling of responses NM received when we asked freelancers and staff to ramble on about tears, laughter and anger.
A Shell of Tears
First you have to know that I was one of those kids who would weep at the drop of a hat when I was growing up. My various family members thus changed my name from “Lorenzo” to “Lucy,” or “Sissy” or “Brat.” The message was that boys don’t cry, no matter how much they are hurting.
Thus it was passing strange that during the days and weeks after I found myself in the hospital unable to move, friends and family told me that I was stoic, many said wonderfully brave.
Many of you know what it is to wake up in a new world with a new body. My new world was a long ward of 40 beds in a charity hospital where terrible meals were served on dirty trays and the orderlies, nurses, and nurses’ aides were underpaid and overworked and harried. But it was also my school, the place where I learned to ask to be cranked up, to be fed, to be cranked down, to be turned over, to be allowed to pee, to be allowed a bedpan. In my new school, I learned to be a baby again.
As I say, I was very cooperative. And from the perspective of 50 years, I suspect that my stiff upper lip came not from innate bravery, but from shock (this is not happening to me) and innocence (this will soon go away).
This bravery lasted for a full three months. No matter what demands put on me (by the staff, by the nurses, by the physical therapists), I was a patient patient. Uncomplaining. Dutiful. Cheerful. A brave new boy in a brave new world.
It all broke on a foul day in late fall, the day after Thanksgiving. I had just wet the bed. It was raining outside–cold and windy and blowing. Inside the ward the kids, ranging in age from 5 to 20, were running about (at least, those who could run), raising hell, a bedlam of children screaming, laughing, shouting.
They were all very lively, despite the fact that the hospital heater had gone on the fritz and was replaced by kerosene heaters that sent great gushers of black smoke throughout the room.
Back before, November had been my favorite month, for that was when the Northeasters came to the beach: Waves thundered, the water turned dark and tumultuous, gulls floated motionless on the wind, foam scudded along the sands. Often I would go alone to the shore to immerse myself in the tempest.
That day on the ward, a part of me thought, “I’ve got to get out of here. I’ve got to get to the beach.” A new part of me, one I had never heard before, said, “You are never going to get out that door.” The innocent boy that was me had fled, a ghost … and I was left behind in this ward where there was no privacy, no escape, no hope. Nothing was now left to me: no dreams, no faith, no need nor desire to live.
A kind nurse, Miss May, saw me huddled under the sheets and pulled my bed down to the empty physical therapy room. There, amidst the pulleys and chains and torture tables and electric shock machines they used on me every day, she changed the bed clothes, the ones I had soaked with my urine, the ones I had soaked with my tears.
Miss May said that I shouldn’t be sad–that it was all right, that everything would be all right, but I scarcely heard her. All this time I had been holding onto something called hope, but now it was melting away. Something new was being born, a shell, a mother-of-pearl, not unlike the shells I used to pick up during the storms on the beach. The new me would grow into that shell, seeking protection against the hurts within and without.
Miss May said that I shouldn’t be sad–that it was all right, that everything would be all right. She was lying, but it was a kindly lie. She and I knew that I would not be all right, not for a long time, not until I could begin–years and years later– the process of melting down the carapace that had been born on that dark and windy day, amid the chains and pulleys and the great salt tears.
The Best Medicine
It’s only funny ’cause it’s true. Those immortal words come from none other than noted sage Homer Simpson. In my experience this saying can also be used to describe maintaining emotional health as a person with a disability.
My disability was congenital–I was born missing part of three limbs. Though nothing was ever amputated, doctors still officially diagnosed me as a “triple amputee.” Certainly fear and worry were among my extended family’s initial reactions to my disability. Partly because it was so utterly unexpected and unexplained, but also because they just presumed what everyone else did: that people with disabilities would not have much of a life.
This was 1974, a good 16 years before the passage of the ADA. Heck, it was even before MTV, the Reagan years, and the cola wars. Thus, it was not until I moved from my native Colombia to the United States and started wearing prosthetics on both arms and my right leg that my family was encouraged. Once I started utilizing my two hooks and wooden leg and attending school, then my family saw a bright future could still materialize. Their encouragement, no doubt, was crucial.
I could write about the tears, because they came. Like when girls would bypass me in favor of other more physically “normal”–though clearly intellectually inferior–male brethren. There was the girl, in fact, who once took my courtship letter and tossed it in a nearby trash bin with such authority that Shaquille O’Neal would have been proud. Or the girl who took one glance at my prostheses during a youth camp, cringed and walked in the other direction. Or the girl (are you sensing a pattern here?) who was bold enough to date me in school, only to be chastised by her friends for dating “a handicapped guy.” The girl, I should note, stuck around, but truthfully so did the hurt.
I could write about the anger, because it came. Such as when the other guys would engage in football, baseball or basketball and not really have enough room for someone to limp around their pick-up game. Or the camp counselor who insisted–at the behest of his colleagues–that the disabled boy be sent home for fear of liability. Or when potential employers glance at your resumé, then glance back at you, and suddenly your college degree just doesn’t fit the bill for the position they are filling.
But I will choose instead to focus on the panacea for tears, anger and other frustrating emotions–laughter. When people ask me–and boy do they, on the street, in the mall, at the ballpark, anywhere, truly–what the key has been in overcoming obstacles and maintaining a state of happiness, I smile. They have no business bugging me, but no polite person will tell them that, unless truly agitated or otherwise inebriated. So I tell them some simple truths. Faith is my cornerstone. Family encouragement is my fuel. The reality that I need to work to pay the bills drives me as much as it does the rest of the rat race.
But the real key is laughter. Laughter keeps me going, pushes me through the frustrations, places everything in perspective. Like laughing about my limb popping out of the prosthetic arm socket during a driving test. Laughing about my lip freezing onto my hook in frigid winter weather. Laughing about street bums refusing to hit me up for money because, with one glance, they figure I am surely worse off than they are. (Never mind my shirt and tie and obligatory trophy blonde.)
Laughter is crucial. When the disability community convenes in a group setting, we should laugh instead of sharing sob stories. Not that venting and storytelling and griping aren’t therapeutic. I just don’t think they should be the central theme or mood. And if someone laughs at my mishaps or life condition, in a tasteful manner of course, I don’t regard them as insensitive or cruel. Usually it just proves that they’re more comfortable with my disability than the others who are excessively polite and delicate.
My life has surely had its share of pain, frustration and heartache. But really, so does everyone’s. What helps me overcome the travails of living with a disability is not necessarily inspiring thoughts or motivational methods. It’s laughing. At myself, and at my perils. It’s only funny ’cause it’s true.
Defeating the Evil Dark Lord
I drive my wheelchair over to the fridge and try to force my fingers around a can of Coke from the so-called “handy” pack. Not so handy to me, I think to myself. After two minutes of trying to grip it, it slips out of my hand and falls on the floor, spraying sticky goop all over the freshly mopped floor (which I finally got my PCA to do).
This is when I usually start crying.
I was 10 years post-injury on Aug. 25, 2003. The anniversary was the hardest yet. I simply can’t believe I’ve been sitting on my ass for a whole decade. Ten years of wasted life? I’ve done nearly everything a nondisabled 24-year-old has done. I got a college degree, my driver’s license, live in my own place, I have a great boyfriend. But I still feel I’ve missed out on life; that I only half-lived in some sick, self-depreciating way. Yeah, I know it’s unhealthy. I’m being prejudiced against my own disability, stupid I know. That’s how I got depressed right after my accident in the first place. I should stop it.
I cry when no one’s around; when I’m alone in bed and know my neighbors won’t hear because I’ve muffled my sobs into the pillow. Embarrassed to let anyone hear me. I hate pity. Who says they have it better than me? I’m the only one who’s allowed to pity myself. And I have every right. My life sucks. It’s a living nightmare.
Luckily this doesn’t happen often. Don’t worry, you suicide watchers out there. I love chocolate too much to kill myself.
One thing that pisses me off are people who wouldn’t get cured if they had the opportunity. Would I take the magic pill? Absofuckinglutely. Ten years have passed and I’ve adjusted and I’m overall pretty happy. But am I perfectly content only being able to move 15 percent of my body? Hell, no. I’m sorry but the body never forgets.
Waking up from my sleep. Flat on my back. The reality of being disabled sweeps over me like a cold tide. Always on time, never-ending. The moment of, “I can’t believe this is my body I’m living in,” floods my thoughts, always fresh no matter how much time passes. As reliable as gravity pulling down rain. But then it dissipates and my day begins. These fleeting moments are short but they act as tainted touchstones, reminding me of what I’ve lost. But I don’t allow them to dictate how I feel for the rest of the day. They’re not my drill sergeant. If I did let them, I’d be a mushy, piled mess on the floor 365 days a year.
The best way I “deal” is by being stubborn and determined. Paralysis is an evil dark lord that I must defeat. Don’t let it take you alive! Save yourself while you still can! It’s a contest I must win. Don’t let it take away your dignity, your self-respect. Don’t let it rob you of your hopes and dreams. Don’t let it make you feel ugly. You are beautiful, no matter what they say.
Sure my life has been different, unexpected, abnormal. But I feel that despite my grief and sadness, my life has been astounding. I’ve been a fighter, I’ve torn myself away from caring if people judge me, and most of all, I’ve been fairly hopeful. Maybe it’s my genes or maybe I just hit my head too hard on the bottom of the lake that day, but despite my several neuroses and miserable moments, I’ve been able to forge ahead and love myself again. I’ve come to learn that getting depressed and hating your situation is normal no matter how much time passes. That will always be my reality. And I can live with that as long as the good times outnumber the bad. Hopefully, that will always happen.
A freshman quad in college, I was more wet behind the ears than your average student fresh off the high school boat. Already inherently an awkward time, my circumstances were compounded tenfold by my injury, as I was still a very sick kid. In a chronic fit of adolescent pride, I had vehemently rejected the use of an electric chair, feeling it was an insult to the pathetic shreds of vanity and “normalcy” I thought I was clinging to.
I was busting my ass on the historic University of North Carolina-Chapel Hill campus I loved, full of fear that my body would rob me of graduating and the intellectually stimulating four years I so craved. Hour rolls to the next class were commonplace, often at inchworm speeds up hills with which I would stubbornly accept no assistance. There were oh so many offers–even I knew it was painful to watch.
On my slow trek one day over to Hamilton Hall for my next class, the sky tore open, my fellow students with youthful legs accelerated to class and covered their heads with their books. Trapped at the foot of the ramp to Hamilton, I started the slow ascent as the torrent bore down on me, my fellow dry students watching from within the glass as I struggled, hands slipping many times off wet rims. My long struggle ended, I came through the door soaked to the bone, the small crowded lobby full of onlookers with sad looks on their faces in reaction to my seeming suffering.
It was dead silent, save for this one spunky guy in the center who was doubled over laughing while his neighbors stared him down, as if to forcibly share with him whatever taboo it was that kept me from being seen as an average guy caught in a comic circumstance, injury be damned. In between breaths while laughing, he exclaimed, “Gettin’ it man! You were out there gettin’ it!” We collapsed together in irreverent laughter, our fellow students never cracking a smile. What a shame they didn’t know it was fine to laugh along, but I understood. In that moment and even now I love that guy, and I don’t even know his name.
Not Just Funny-Looking, But Funny
As a kid, I stayed inside with the adults because my disability, osteogenesis imperfecta, wouldn’t allow me to rough and tumble with the kids. So, I’d sit patiently between Grandpa and Dad and listen, then remember each joke right down to delivering a good punch line. When Gramp discovered my prowess at jokes, he’d sit me down on top of the kitchen table with whomever had come to visit and say, “OK, Babe, tell them the one about the lady from Nantucket.” And off I’d go. People howled! Here was this tiny, blonde girl with ruffles and big eyes reciting the most heinous jokes you could find. That laughter became my addiction and my savior as I grew up.
I found as I was introduced into school and groups with children that I became less of a butt of harassment if I told jokes or could engage someone with witty remarks. If kids were ready to pounce on me or start to make fun of me, I could turn the joke around quickly on the bully with a few fast comebacks. After students got used to my small size and wheelchair, they discovered that I wasn’t just funny looking, but funny as well.
I have a habit of going up to a stranger and commenting on something nearby just to get a conversation going. Usually they stand, rigid, waiting for me to tell a sad tale or ask for a helping hand. Instead I come up with something so completely odd that they laugh: “Check out that baby over there. Aren’t babies cute? You know, they have to be … otherwise we’d kill them the first time they shit their pants.”
Or I’ll point out a toilet paper trail following someone down the hall, or an all too-obvious toupee, or some unusual habit that most people would just ignore. Most polite people. But not me. I figure if God hadn’t meant for me to use this, he wouldn’t have given it to me, and I twist the most mundane behavior into a chuckle.
The Secret Life of Tiny Tim
I have a friend, Maria, who I’ve known for more than 20 years. To this day, one of her most vivid memories from high school is of the time I threw a chair at her.
It was nothing personal. Or at least I don’t think so–I don’t actually recall the incident. She and I were both on the staff of the school newspaper, so I’m guessing that my outburst had to do with one of the frequent disputes I got into with the paper’s editor-in-chief. Maria herself simply was caught in the crossfire–or cross-chair, or whatever. Still, my own memory notwithstanding, I have no doubt that things happened exactly as Maria describes them. I had a lot of … issues … back then.
I’m much better now. No, really, honest.
These are angry times we live in. Road rage. Air rage. Jerry Springer. Bill O’Reilly. In just a few decades America has gone from a society of Wonder Bread-stuffed emotional constipation to one in which everyone expresses whatever they’re feeling whenever they’re feeling it–and much of the time, what they’re feeling is pissed off. Politicians and pundits will bemoan the lack of civility in public discourse and then immediately turn that lament into a club to bash their opponents with. In politics, in business, on television and on the school playground, whoever throws the loudest temper tantrum wins.
Unless he or she is a crip, that is. People with disabilities aren’t allowed to get vocally angry. The same societal nonsense that gushes over us as “inspirational” for simply going about our daily lives, condemns us as “bitter” or “maladjusted” if we let anyone know that we’re having a really bad day. If I mutter a few four-letter words at the supermarket, it can’t be just because that jackass cut in front of me in the checkout line–no, I must be cursing the cosmos for putting me in this wheelchair.
One time, after an incident like this, one of the caftan-wearing New Age types you see a lot of in California floated up to me and said, “It’s OK. The universe has a plan for all of us.”
“That’s nice,” I replied. “Is the universe planning to make you shut up anytime soon?” Being able to express your anger without censure is one of the initial attractions of disability-rights activism. Both current and former ADAPTers have told me about the incredible rush they felt at their first action–the jolt of power when they realized that they could yell, scream, be angry, without fear that the people around them would shut them up, ignore them, leave them stranded in bed or on the toilet. Rage is euphoric. Like sex. Or cocaine.
But it also can be just as addictive. Years ago, when asked how cocaine makes you feel, comedian George Carlin replied, “It makes you feel like having more cocaine.”
When crip writers talk about “disabled rage,” they usually (or at least most often) refer to people whose disabilities are fairly recent, i.e., John Hockenberry destroying a New York City taxicab whose driver refuses to transport him and his wheelchair. The newly disabled, so the narrative goes, are consumed with anger over what they’ve lost, outraged over their sudden demotion to second-class citizenship. Eventually they either burn themselves out, turn their anger inward and spiral into depression, or channel it into something righteous–career, activism, religion.
Those of us disabled from birth, meanwhile, are supposedly better adjusted than that. Having never experienced life as an AB, we gambol around in blissful ignorance of what we’ve never had–greeting every new day with a smile, making lemons into lemonade. Good little poster children, all of us.
In a word, bullshit.
Granted, we do smile a lot. It’s how we’re socialized. We learn early on how to get our needs met by conning the adults around us. No one likes a nasty crippled kid, so we swallow our anger and contempt, switch on the Tiny Tim act and suddenly every grownup within a five-mile radius wants to carry us on his or her shoulders. (Personally, I never trusted Tiny Tim one bit. I think Charles Dickens just left out the final chapter of A Christmas Carol in which Tiny Tim goes on a citywide murder spree and is brought down in a hail of bullets.)
But eventually the act stops working. We grow up, we lose our childlike cuteness, and people start to see through our manipulations. At some point each of us must make a choice: to become a civilized human being, or a sociopath. Becoming a human being is much, much harder, with no guarantee of success.
I decided not to be a sociopath.
At least I think so. It’s not easy to tell sometimes.
God bless us, every one.