I submitted the essay below to Glamour magazine's "My Real-Life Story" contest. Still awaiting word as to whether I "won" or not. And even if "not," than the cathartic effect of finally expressing all this was worth it. The essay is about 2006 - the year I suffered through and survived disability, disease and dysfunction. Upon further reflection, some may say conquering that experience was all a testament to my endurance, my faith, my inner strength. More so, however, I think it was a wake-up call - a reality check to assess my life as a reality TV producer. I needed to stop worrying about other people's reality -- and focus on the quality of my own.
Unlike my other posts on this blog, there are NO PHOTOS to accompany the essay. It was a rare time in my life when I did not take one photograph. Perhaps I should have, to really chronicle what I went through. Call it some sort of denial but I did not want any pictures capturing that nightmare of a year. Little did I know that the images burned on my mind and memory would be worse than any snapshot. I hope my words below convey the emotions, the experience and the painful journey I unexpectedly went on -- inside and out.
SKIN DEEP
The year a woman turns 30 is supposed to be one of the milestones of her life. It’s the turning point inwhich she seeks stability and substance in both career and romance. When professionally and personally, you transition from a twenty-something who-you-think-you-should-be to a thirty-something who-you-know-you-are.
2006 -- the year of Eat Pray Love -- was the year I turned 30. That year, was indeed, a life-altering, eye-opening experience for me. Not because of some spiritual, sexual sabbatical frolicking amongst foreign countries -- but because, quite the opposite, I was bedridden, housebound, and devastated by a disfiguring disability for the entire year.
1980s - Since childhood, I suffered from severe eczema. A skin disease that ravaged my legs, my arms, elbows, knees, torso, hands. I remember hiding in baggy clothes as a schoolkid lying with excuses that “the mosquitos got me” when everyone asked why I was constantly itching, red, swollen and covered up. I remember crying to my parents to “fix me” as they tried to soothe my infected wounds I would scratch raw. It was like chronic poison ivy -- and the poison in fact started all those years ago.
I went to a slew of dermatologists that would put me – as a child -- on a cocktail of topical and oral steroids that included creams, ointments, and Prednisone pills. Before I hit puberty, I received monthly steroid injections of Kenalog.
1990s - By high school, the disease spread to my neck, eyes, cheeks, forehead. The worst thing to happen to a self-conscious teenager is something wrong with their appearance – especially their face. The problem continued to spread not only across my body but also throughout my college years as well. I became unable to tell what was more uncomfortable - the heat of the rashes or the flush of embarrassment when people would stare at me.
While my peers dealt with acne, I slathered on layer upon layer of lotion, ointment, and caked makeup in attempts to conceal my skin disease. I sported long sleeves even in the summer and often hid beneath a collection of baseball caps. I avoided mirrors and reflective surfaces, even car windows and storefronts.
I became a night owl – relishing the relief of sleeping all day and going out at night under cloak of darkness. This suited me well as I moved to New York City after college –cherished the nightlife, avoided brightly lit subway cars and sought solace in dark taxis, bars and clubs.
2000 - All the while, the dosage of my medications increased over the past decade. I continued to pop steroid pills like they were daily vitamins. Dermatologists continued to prescribe steroids to combat my skin flare-ups, which occurred every few weeks to months – caused by everything from stress to a change in the climate. At 23, I moved from NYC to LA to pursue different work opportunities, but even the beautiful California weather didn’t soothe my skin.
They always say “at least you’ve got your health.” But what happens when even that is no longer true? The worst year of my life literally knocked me off my feet and crippled me from the inside out.
2006 - It all came to a screeching halt towards the end of a television shoot I was producing. I had been living in Los Angeles for six years as a reality television producer. I was used to long days and late nights, traveling the country -- even the world -- on-set, on-location, behind the camera, filming and documenting the drama of everyday people. Never did I think that my own reality would become so dramatic.
My skin was flaring worse than ever and, despite all the steroids I was on, I could not get it under control. Head to toe, I was covered in scaly, crusty, tender, swollen oozing patches and rashes. My face was puffy and barely recognizable. It hurt to touch and be touched anywhere, by anybody. My scalp was flaking in large itchy sheets and areas of my body were so infected that a fever added to the stress of my work fatigue. It hurt to move, to sit, to bend, anything. The pain became unbearable and when we wrapped filming, I sought a new dermatologist, Dr. Marvin Rapaport, a specialist in Beverly Hills.
He took one look at me and said “How many years have you been on steroids?” I can’t tell you how impactful that sentence was to hear. There was something so liberating and devastating about it all at once. As if I knew all along what was causing this – and yet willingly kept ingesting it into my system.
“You’ve had eczema since childhood, right? Every doctor has always given you steroids? A lot of steroids? How many years?” he asked again.
And it was like I heard someone else’s tiny voice far away say, “…since I was 10.” I was already mortified by the math I was calculating inside my head these past two decades.
“Since you were 10,” the doctor repeated. “You’re 30 now, Tess. You’ve been on steroids for TWENTY YEARS. You don’t have a skin disease. This isn’t eczema. You don’t battle childhood eczema into your thirties…the steroids did this to you.”
I remember blinking at him, staring at him, shocked into silence.
He told me I was suffering from Steroid Addiction Syndrome and that I had all the typical symptoms of what he called “a red patient.” I was more than hot and bothered – my skin was on fire, burning, red and raw all over.
The abundance of steroids in my system throughout the years created a vicious cycle. The worse my skin became, the more I used the steroids. Once I was off the steroids, my skin flared more and more, therefore requiring what I thought was the need for more steroids … and so on and so forth.
And then he told me, the hardest thing I’ve had to hear and the hardest thing I’ve ever had to endure.
There was nothing he could do to help me. In fact, he was going to take me off steroids immediately and completely. Dr. Rapaport explained that quitting “cold turkey” was the best cure for steroid abuse. Like any other drug, I would have to “detox” and get it out of my system. My body was shutting down from the inside out.
He was very matter-of-fact and upfront with me, he told me there would be tremendous pain and suffering. That I would have to quit work, possibly be immobile, and need home care. He said I would want to give up every day. He told me it would take months, even years, before my skin healed. And after he told me all this, he asked me one question: will you trust me?
Such a huge question with such monumental consequences and yet I knew the answer immediately. Yes. I knew my blind faith would be the only freedom from my life long struggle. I had to trust that the very thing I thought was curing me was the actual problem. I would have to try the one thing I had not: nothing.
I remember seeing a state-appointed doctor shortly afterwards to verify my disability claim. He took one look at me and asked me why I would do such a thing to myself? Why I would willingly suffer in pain? He lambasted Dr. Rapaport and promised me he could inject me immediately with steroids and I’d be back to work in a matter of days. I refused and told him I felt that was the problem all along. He approved my disability but shook his head as he signed the paperwork… “you’re doing this to yourself, you know. The steroids will fix everything.” And that doctor? I most definitely did NOT trust.
I believed Dr. Rapaport’s explanation that doing nothing would give me my health back. Simply time and patience and endurance would clear my skin. And he made me think of a Winston Churchill quote, “if you’re going through hell … keep going.”
The next year of my life was indeed, hell. I was trapped inside a shell of my body, of my former self – physically, emotionally, mentally. The withdrawal from the steroids caused a roller coaster year of skin flares from month to month - swelling, edema, bleeding, oozing, scaling, burning, itching worse than ever before. My immune system began to shut down.
I remember two vivid moments that literally brought me to my knees. The first was realizing I had to give up my precious mutt JackHammer, who I had rescued a mere year before; in fact, I felt more like he had rescued me. He was a boy worth coming home to at night – my true unconditional love. With a history of murdering houseplants, I took pride that I could “parent” a living thing for once.
But due to my illness, I couldn't take care of Jack or walk him. Every time I would try to walk him, his leash would pull in my hands and rip the wounded flesh right off. Jack would jump on me too and want to cuddle and be pet and it would be too painful for my skin and my heart. He wanted to be loved and it hurt too much to love him. And so I made the difficult choice of giving him to a friend until I was well enough to walk again and love him the way he deserved. I kissed him goodbye and gave him this promise in his scruffy ear.
The second crippling experience was in the shower. It became clear to me that it wasn’t just my inability to walk any more, I could barely stand. Even the gentle stream of water from the showerhead, a seemingly harmless drizzle was excruciating on my skin. Pieces of my face were literally falling off. I sobbed in a ball on the floor of my shower, holding crumbling pieces of myself in my hands and stared at everything going down the drain. It was time to call my mother.
Over the next several months, my family took turns flying in from across the country to move in with me. I was as incapacitated as a severe burn victim. My sister would change my dressings and bandages, tell me jokes and stories from our youth and sing familiar childhood songs. On occasion, my father would visit, watch DVDs with me and kneel at the foot of my bed in prayer, while he thought I was sleeping. It is a powerful thing, especially for a daughter, to see their father cry. It’s like watching your superhero reveal that he’s mortal. And when he leaned over me to soothe my wounds with loving words, I could not tell the difference between which tears were his … or mine.
It is humbling for a 30 year old woman to be reduced to childhood again. Stages of infancy where your mother helps you to the bathroom and cleans you and cares for you and spoon-feeds you. Sometimes I didn't get out of bed for over a week, I didn't have the strength to walk to my mailbox in the lobby or even around the block, I'd lean on my mom to take a few steps. And ultimately, I leaned on her for more than that. My mom changed my towels, sheets all day long. They were full of skin and blood and pus and ooze. She did laundry for hours on end in my basement full of coin-operated machines. She'd vacuum every hour piles of skin from all my furniture, bed, chairs, sofa, floor. Scales fell from my scalp, crusts collected from my nearly skinless body, too. My mom had to lower me in the tub twice a day, I spent hours in soothing oatmeal baths but even that was unbelievably painful. My mother washed my hair because I could not. The weaker I became, the more my hair fell out in clumps. I lost my eyebrows, too. And still, my mom brushed my hair and ponytailed it like I was a little girl again.
Her little girl. Always. I begged her to shut off the lights and cover the mirrors. Just like I was as a child, begging her to “fix” me. My apartment was a den of sickness, frailty and fear. I kept the shades drawn. The lamps off. I hid in the darkness. I hid from everyone. I forbid anyone from visiting.
Friends’ e-mails, text messages, notes/cards/flowers/gifts, voicemails went unanswered. “Tess … are you there?” I, most certainly, was not. I cut myself off from all human contact. It hurt to be in any sort of literal or figurative contact. I simply was not ready. Months went by this way – in the darkness with the mirrors covered, as if my mother and I were sitting an endless shiva, mourning and grieving the loss of who I used to be.
I couldn't wear clothes, couldn't wear shoes, couldn’t stand in the kitchen to prepare a meal. I couldn’t pour myself a glass of water, couldn’t grip a fork, couldn’t type an email or a text message. I couldn’t wrap my hand around a phone or press numbers to dial, couldn’t pick up the remote control, couldn’t hold a book or magazine. I would just sit 24 hours a day and cry until I passed out in constant pain, discomfort, throbbing, agony, itching, burning. My legs, arms, face were swollen with fluid, red and bloated. I couldn't bend anything, I couldn't move. For months, my skin had to ooze then bleed then shed. I went through extreme sensations of sweaty heat and ice-chilling numbing cold. It was as if my body did not know up from down and was subject to this painful pendulum of back and forth, unable to find any sense of calm, peace, equilibrium.
Throughout all this, I saw Dr. Rapaport almost every day, I thought I would never get better. His nurses and staff rushed me through the crowded waiting room in his office, draped me in blankets to avoid stares of curious onlookers. “The skin is the biggest organ of your body,” he’d explain. “It’s so damaged right now, it doesn’t know how to regulate your temperature. It needs time to rid itself of the toxins and to heal. But…you look beautiful,” he’d tell me every visit. “Better and better every time I see you.” I’d cry, scream and curse at him. “Look what you did to me! I’m a monster! I’m not getting better, I’m getting worse!” He just kept repeating it would take time. More time. That’s all I had.
In terms of medication, I was only on sleeping pills, painkillers and antibiotics to fight infections. No medicine for my skin itself. I used tubs of Aquaphor, ice packs, wet towels, frozen packages of veggies to soothe my face and skin. Wet, cold compresses were an attempt to stop all the bleeding and oozing. Just when I would think I was better for a week, then I'd flare terribly for two weeks. One area of my body would improve, then another would be horribly itchy, red and oozing again. It was debilitating, frustrating, maddening, depressing.
After six months, I even tried to return to work as a producer on a daily talk show. But I was in too much pain, wrapped in bloody gauze bandages like a mummy from your nightmares, shedding skin all over the place, my Freddy Krueger face too defeated, my body too exhausted to handle even sitting upright, much less returning to the working world and my industry’s relentless production hours. And so, I accepted my severance and was told to go home and heal.
I had been sick for what seemed like so long. I knew to regain my physical health, I needed to tend to my mental, emotional, spiritual wellbeing, too.
The past year had rocked me to the core and I was in this strange transformative state of rehabilitation and regeneration. You hear about the symbolism of caterpillars and cocoons, the beauty of butterflies, the recurrent process of metamorphosis in life.
But I was scared. For every reason and no reason in particular. I wanted to stay in the darkness, hide in my cocoon, hide in the shell of my old, ugly self. To marinate = fester= wallow. I was afraid to emerge.
Amy Bloom once wrote that “the things that happen to us – even major, terrible, life-altering things: birth, death, prison, abandonment, illness – do not determine who we are; they reveal who we are.”
Halloween 2006 – I didn't begin to recover until the holidays. On Halloween, people hide themselves in masks, cloaks, capes and costumes on purpose. Ironically, at this point, my bandages slowly came off, my scabs and scars began to form a newer, tougher, stronger me – in more ways than one. I was still swollen, itchy with many rashes and in much pain, but that night in October, on the darkest of holidays, things started to turn around and brighten up for me. My best friend was throwing a costume party and decided to dress as Hugh Hefner. Other female friends followed suit, finding the sexiest, most revealing Playboy Bunny outfits – complete with racy corset, fluffy tail and buoyant bustier. I decided to make a statement, since obviously I still wanted to cover up. I bought a child’s Bugs Bunny costume and was covered head to toe – ears and all, chewing on a long, leafy carrot. I was a hit at the Halloween Party, dubbed the cutest “Bunny” after all and ended the night with my first human contact in months and grinning from ear to floppy ear.
Thanksgiving turned to Christmas to New Year’s. And I was indeed in full swing of a New Year full of Recovery, Recuperation, Rebirth, Realization, Renewal. I got JackHammer back and our favorite times returned: long walks and runs on the beach. The skin on my face and neck cleared first, then slowly the rest of my body. My hands, arms, legs and feet were the most stubborn. In fact, even now, 4 years later, my hands are still often dry and sensitive and cracked and itchy -- a reminder of all I’ve been through along with a map of scars and discoloration.
I can't believe the year I thought would be the biggest of my adult life, the year I turned 30 – was the worst year of my life. A long struggle, a painful struggle, it is something I would not have survived without my family, my friends, my faith. I had to believe in Dr. Rapaport and that the one thing I had never tried -- which was NOT using steroids -- would ultimately cure my condition.
The wounds on my skin healed but the internal ones remain – and they are deep. It is a daily battle but I still have the faith that time will heal these wounds, too.
Dr. Rapaport helped me in this respect as well. He connected me with other Steroid Addiction Syndrome patients. I began to counsel others with my tale of survival. Talking to others - especially parents and children – was like a miracle salve on every painful spot on my skin and in my heart. My words seemed to ease their doubt with dogged determination, their helplessness with hopefulness. I showed my scars to a suicidal bandaged red-faced 4 year old in LA and told him, one day he’d have no “boo-boos” at all. I befriended a family in New Jersey that would call me and email me at all hours of the day and night. A mother begging for answers. A father sobbing to me like I had witnessed my own father weep. A little girl overcome with relief to meet someone who had already come out the other end of this brutal journey. To this day, I am continually blessed to help with stories like these and share my own experiences – of patience, trust, faith, love and survival.
The Jersey girl took two years to recover. Last month, she e-mailed me school dance pictures of her in a rather revealing dress. Her father said “I used to worry about her staying alive, about her skin recovering at all … now I’m a typical dad of a tweenager, hoping she’d cover that skin up again!” To share laughs with a family after so many tears was more than uplifting and comforting; it provided the healing that my soul and spirit needed after the steroids wreaked havoc on my skin -- and my life.
The year I turned 30, I lost a lot of things from my life. I shed my skin – literally and figuratively. And I believe, because of that experience, I regenerated anew and am truly comfortable in my own skin now.
