March 2013
The Works of Nadine Friedman
Nadine Friedman...My Story
On October 30, 2010, a week after a camping trip in Maine, I woke to unbelievable pain in my neck: a bladelike, immovable sensation from collarbone to ear. An injury from my bartending gig? Too much yoga? A week later, it got worse. The pain began to travel down my right side to my foot. December added back spasms lasting hours, vomiting spells and skin so tender I couldn’t be touched. I forgot words, wrote them backwards. One night, over burgers in my boyfriend’s apartment, I couldn’t swallow, my brain clicking like a camera shutter with no film. Because I didn’t want to ruin dinner or seem paranoid, I pretended to focus on the movie when really, I sat paralyzed.
And things had been going so well.
For four months, at least; my mother had passed away that previous May from complications of Multiple Sclerosis, and it was a release all around. I’d been obsessive about health my whole adult life because of it; I ran 4 miles a day. I did yoga. I rode my bike and was ritualistic about carbs. I refused to ever get sick. That’s why I was so scared on paralyzed-burger-night; I’d always feared becoming my mom, getting sick like her. MS wasn’t genetic, but it wasn’t impossible.
It just got worse, this unexplainable pain. Winter 2011, I lost my job, then my apartment. Uninsured and seeing every kind of specialist, I spent $23,000, went well beyond broke. I moved into my boyfriend’s tiny studio, spending most evenings lying on the floor/ feet on the couch, incorporating whatever advice I’d received that day from a chiropractor about my alignment issues watching Bravo upside down. GP’s told me it was delayed stress from my mother’s death, put me on antidepressants for fibromyalgia. There was herniated discs, maybe; a rheumatologist injected my neck with $1,300 worth of cortisone while suggesting I needed more attention. Maybe a movie date would solve things? A $180 an hour psychotherapist told me discussing my mother had curative powers over back pain. By summer 2011, I couldn’t turn, lie down, stand. Nor speak, my glands were so swollen and my jaw so stiff. I puked on a Harlem street one time. My left side would go numb and my family, confused and helpless, told me I probably just needed more therapy.
And things had been going so well.
For four months, at least; my mother had passed away that previous May from complications of Multiple Sclerosis, and it was a release all around. I’d been obsessive about health my whole adult life because of it; I ran 4 miles a day. I did yoga. I rode my bike and was ritualistic about carbs. I refused to ever get sick. That’s why I was so scared on paralyzed-burger-night; I’d always feared becoming my mom, getting sick like her. MS wasn’t genetic, but it wasn’t impossible.
It just got worse, this unexplainable pain. Winter 2011, I lost my job, then my apartment. Uninsured and seeing every kind of specialist, I spent $23,000, went well beyond broke. I moved into my boyfriend’s tiny studio, spending most evenings lying on the floor/ feet on the couch, incorporating whatever advice I’d received that day from a chiropractor about my alignment issues watching Bravo upside down. GP’s told me it was delayed stress from my mother’s death, put me on antidepressants for fibromyalgia. There was herniated discs, maybe; a rheumatologist injected my neck with $1,300 worth of cortisone while suggesting I needed more attention. Maybe a movie date would solve things? A $180 an hour psychotherapist told me discussing my mother had curative powers over back pain. By summer 2011, I couldn’t turn, lie down, stand. Nor speak, my glands were so swollen and my jaw so stiff. I puked on a Harlem street one time. My left side would go numb and my family, confused and helpless, told me I probably just needed more therapy.
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I desperately hunted for answers, attacking my symptoms while ruining relationships. I thought about killing myself, one terrible night while looking at the data- I would never have an answer, never get better. I, so ferocious and tough, thought about suicide. It was partly the disease in my brain, partly the antidepressants, partly (at the time) logic. It was October 2011 when I learned, at least, I didn’t have MS. "Try an antidepressant”, the young, indifferent neurologist suggested while tapping his fingers on the desk because there were dozens of people after me, “because there’s nothing physically wrong with you.” That November, a friend mentioned that trip to Maine the year before. The woods. Hanging out around a fire. Only two days, but had I been tested for Lyme Disease? I hadn’t. And it was. I got the Igenex results Thanksgiving weekend. Bartonella, Lyme, and Ehrlichiosis. I cried, vindicated. I began treatment for this expensive, confusing and political disease last February. Some days are awful, isolating. The neck pain, the first sign, is a constant, ghostly reminder of how messed up everything got. |
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I hate identifying with any kind of population, especially the “sick” one. I overcompensate because weakness is so frustrating. Other times, it takes everything not to remind whoever I’m talking to, “Just an FYI, I feel like crap. Just so you know”. There’s no point in doing that; I only want to because I’d feel less alone, less misunderstood. Get more seats on the subway.
But some days are pretty good. Good looks different for the chronically ill, of course, different from the old version of my life. I feel like a total asshole, thinking about how I counted carbs, left dinners to go to yoga, obsessed over control. Nobody can control. There’s no ‘as soon as xyz, my life can xyz’. I have to remember everyday: this IS my life. Right?
But some days are pretty good. Good looks different for the chronically ill, of course, different from the old version of my life. I feel like a total asshole, thinking about how I counted carbs, left dinners to go to yoga, obsessed over control. Nobody can control. There’s no ‘as soon as xyz, my life can xyz’. I have to remember everyday: this IS my life. Right?
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I can’t waste days waiting for a magic bullet. I have amazing friends, the love of my life and focus. And five credit cards to pay off from this. I try to release the unhappiness and the fear by writing, especially about others facing issues like this. The current project, the one I raise money for and try to create awareness of, is exploring MS throughout the US. It’s a tribute to my mother, as well a way for me to find answers in my own fight.
I went into this project trying to 'cure' myself, whether my symptoms were psychological or, as I assumed, MS. They were neither, but the lessons I'm learning apply anyway. Lyme, MS, cancer, whatever- no matter what we face, we're more. These photos are empirical evidence. We're more than our bodies, only as limited as our imaginations. |
The people I meet prove that chronic doesn't have to mean a life sentence, and that fear of the unknown only holds us back. They refuse to be defined by a disease. They aren't heroes; they're people, with careers and ambitions and babies and senses of humor. They're my teachers in the scary, unpredictable journey I'm on myself, sustaining me, reminding me how much I truly have.
Once this book is finished, I plan to start a new journey, just as close to my heart, photographing and sharing the stories of people living with lyme throughout the country.
Once this book is finished, I plan to start a new journey, just as close to my heart, photographing and sharing the stories of people living with lyme throughout the country.
About The MS Project...
One year after my mother’s death from complications of Multiple Sclerosis, I set out to understand her. She had lived with MS for twenty years, yet never spoke of what life with that mysterious, debilitating illness was like; it was only after she was gone was I ready to ask.
Worldwide, MS is thought to affect more than 2.1 million people. There are approximately 400,000 people living with the disease in the United States alone. For each person diagnosed, there is a community of people whose lives are directly impacted by MS.
Since May 2011, I've been meeting some of them; and somewhere along the road, a dialogue about the painful dissonance between who we are and the bodies we inhabit began.
From a young woman in Albuquerque taking a bold but risky approach to self-advocacy, to a letterpress shop owner contemplating Kandinsky on Asheville’s lonely riverfront to a tattooed Tennessee frat boy struggling to reconcile the roller coaster of illness and vitality, I’m invited into the lives of those with an unpredictable disease to discover the curious difference between curing and healing.
This book will unite moments and images from my journey with portraits of individuals touched by MS, reexamining what we believe about the meaning of 'incurable' and the fears surrounding it.
Worldwide, MS is thought to affect more than 2.1 million people. There are approximately 400,000 people living with the disease in the United States alone. For each person diagnosed, there is a community of people whose lives are directly impacted by MS.
Since May 2011, I've been meeting some of them; and somewhere along the road, a dialogue about the painful dissonance between who we are and the bodies we inhabit began.
From a young woman in Albuquerque taking a bold but risky approach to self-advocacy, to a letterpress shop owner contemplating Kandinsky on Asheville’s lonely riverfront to a tattooed Tennessee frat boy struggling to reconcile the roller coaster of illness and vitality, I’m invited into the lives of those with an unpredictable disease to discover the curious difference between curing and healing.
This book will unite moments and images from my journey with portraits of individuals touched by MS, reexamining what we believe about the meaning of 'incurable' and the fears surrounding it.
“It is not suffering as such that is most deeply feared but suffering that degrades.” — Susan Sontag
The MS Project Gallery
Lev, Brooklyn, NY
"It's about the moment and enjoying life right now...a little
denial helps, too."
Lev holds an afterparty for the MS Walk every year- in 2011, I had just started my journey, still uncertain of what I was really looking to answer. Lev had been a friend for years- we met around the time I got dumped and spent most nights drinking, wearing sunglasses indoors and telling everyone I’d be alone forever. His voice was frank and funny, shaking me from a puddle of self-pity. “Nadine”, his eyes rolling, “I’m 5’4”, bald, wear glasses and have MS... and I have a girlfriend.” I’ve never forgotten that, partly because I was such a pain in the ass, and partly because I’d never heard anyone really talk about having MS.
I’ve seen Lev emerge a star New York chef, marry, become a father twice. He’s barely 35. He attributes it, in part, to how much time he has left. The unpredictability of MS, its ability to steal dreams and plans; that’s on the mind of this ambitious young dad. I shot this photo as they celebrated their MS Walk team’s success with a big taco feast, and they’re a happy, hopeful family of three (Sabrina was 3rd trimester with Desmond here). This was an awesome, joyful afternoon, celebrating the good that comes out of the bad.
Clyde, their older son, is a Hendrix fan and a total hoot. Lev and Clyde’s biggest lessons and happiest moments come through music, through the possibilities and dreams it reveals. Right now, he’s pursuing his other dream: he just became a restaurant owner in Brooklyn, the best town in the world. I wish him luck and fortune. Mostly, I wish him time.
I’ve seen Lev emerge a star New York chef, marry, become a father twice. He’s barely 35. He attributes it, in part, to how much time he has left. The unpredictability of MS, its ability to steal dreams and plans; that’s on the mind of this ambitious young dad. I shot this photo as they celebrated their MS Walk team’s success with a big taco feast, and they’re a happy, hopeful family of three (Sabrina was 3rd trimester with Desmond here). This was an awesome, joyful afternoon, celebrating the good that comes out of the bad.
Clyde, their older son, is a Hendrix fan and a total hoot. Lev and Clyde’s biggest lessons and happiest moments come through music, through the possibilities and dreams it reveals. Right now, he’s pursuing his other dream: he just became a restaurant owner in Brooklyn, the best town in the world. I wish him luck and fortune. Mostly, I wish him time.
Paula, Rockford, MI
"I will live, and see, and do as much as I can as quickly as I can. Which in the end may be a blessing you’ve bestowed. I just may do more in my life because of you, MS... but I'll never thank you."
Paula gave off the “got it all” vibe at first- young, attractive suburban mother, activist and teacher, two polite and charming sons. But when I showed up in the deep green of Michigan at 1am, I met a woman whose orderly life is complicated by one of the most powerful and invisible symptoms of MS- doubt. Paula is insightful about the rollercoaster nature of this, juggling the effects of MS on her marriage, her kids, her job and her sense of control. Although Paula channels the anxiety and fear well, she’s scared. Of putting faith in medicine she has no reason to trust, of knowing this road trip with her boys might be her last. She is hurrying through life to get in as much as possible in case the disease wins the battle- to Paula, MS is a ticking time bomb, with no clear method for defusing. I spent a long, wonderful weekend with barbeques, rainy days and people I now consider true friends. I also got insight into the life of a woman with deep struggles- to retain power over her body, her relationships and her future. Here, as Paula and Drew sat quietly on a bench outside a Rockford ice cream parlor, I found her as beautiful, tough and enduring as a Dorothea Lange mother.
Claire, Chicago, IL
"The difference between pain and suffering is the thought."
In Chicago, I met a woman embodying the disparity between the body we inhabit and the person we are, drinking whiskey at the Rainbo Club. Built in 1936, still totally electric and secretive and alive. Waist up, Claire Mooney’s a tough, wisecracking bohemian, my girl crush with the same birthday and hundreds of friends. But from the waist down, she has some disability, using two canes to walk and a tricycle (a gift from her friends) to ride her beautiful hometown streets. Reconciling disparities through Traditional Chinese Medicine and the mind’s power: that’s Claire’s thing. She chooses to heal, and listen to, the body. Stoned at her diagnosis, this acupuncturist (who gave me a pretty great needling session), podcaster and feminist chronicled the road from her wheelchair at 23 to embracing the power of TCM to heal, and the body’s will to fight. Pain is real; suffering is a choice. Claire refuses to suffer.
Impossible to imagine disability in this powerful pose; what an inadequate and wrong word. She's so picturesque and serene. She was on her way to a wedding. I remember feeling so good, so at home, that tranquil Saturday.. I think of her often- as powerful, so powerful and so kind it overwhelms. And a thought, managed carefully and with love, can be more powerful than anything.
Jessica, Albuquerque
"I didn't feel I was worthy. I had never looked in the mirror and
told myself I was."
In November 2011, I began thinking at the curious difference between curing and healing, and what the word ‘incurable’ really might mean; a young woman with a painful past introduced this to me. Jessica, then 2 weeks from her wedding to Ric, shared stories of a woman much older than her 25 years. After escaping an abusive relationship, dropping out of school and being diagnosed at 23 with MS, she discovered a holistic system of disease management that requires a strict lifestyle and the ability to self-advocate.
I spent a weekend exploring Albuquerque’s weird paradigms- the psychics, the alluringly creepy alleys, the shimmering carnival of the Marigold Parade, the sleazy but appealing sheen of Central Avenue at 5am. Plus here, the glorious bluff we met at, where her dog Whiskey once ran into the Rio Grande and reappeared, mystifyingly, at a winery days later. Albuquerque is weird, and beautiful, and hardy. So’s Jess.
I spent a weekend exploring Albuquerque’s weird paradigms- the psychics, the alluringly creepy alleys, the shimmering carnival of the Marigold Parade, the sleazy but appealing sheen of Central Avenue at 5am. Plus here, the glorious bluff we met at, where her dog Whiskey once ran into the Rio Grande and reappeared, mystifyingly, at a winery days later. Albuquerque is weird, and beautiful, and hardy. So’s Jess.
Maria and Nat, Dahlgren Memorial Library, DC
"What we call "MS" might refer to no actual kind in the world."
Nat and Maria are a charming and intellectual couple, and each conversation I have with them makes my head hurt (in the best possible way). Maria was diagnosed in 2008 after a frightening roller coaster that left her, at various times: near-comatose, in a wheelchair, incorrectly diagnosed and victimized by the system. These experiences remind them there is much more to a disease than just its symptoms.
Maria chose Dahlgren to symbolize ‘knowledge is power’. Nat also earned his PH.D there, specializing in epistemology (theory of knowledge) and philosophy of language. MS, and its spectrum of curve balls and uncertainties, is a unique thought experiment for a philosopher and, I suspect, a way to psychologically manage its horrors. Nat is compelled by the power of naming in science, and what it might unlock about the nature of disease. This conversation, about what we know about the term “Multiple Sclerosis”, led me to medical anthropologists who helped me understand exactly how we arrive at a word, and how important that process is.
Maria believes knowledge puts her in control, and she is participating in this project to provide comfort and testimony that with trust in medicine and a clear sense of self-advocacy, we have weapons. Their portrait was shot in the Neurological Disorders section of the greatest medical library in the United States. Outside, we sat in the library’s prided pharmaceutical garden- a marvelous and functional world merging nature, science and the spirit of discovery.
Maria chose Dahlgren to symbolize ‘knowledge is power’. Nat also earned his PH.D there, specializing in epistemology (theory of knowledge) and philosophy of language. MS, and its spectrum of curve balls and uncertainties, is a unique thought experiment for a philosopher and, I suspect, a way to psychologically manage its horrors. Nat is compelled by the power of naming in science, and what it might unlock about the nature of disease. This conversation, about what we know about the term “Multiple Sclerosis”, led me to medical anthropologists who helped me understand exactly how we arrive at a word, and how important that process is.
Maria believes knowledge puts her in control, and she is participating in this project to provide comfort and testimony that with trust in medicine and a clear sense of self-advocacy, we have weapons. Their portrait was shot in the Neurological Disorders section of the greatest medical library in the United States. Outside, we sat in the library’s prided pharmaceutical garden- a marvelous and functional world merging nature, science and the spirit of discovery.
Marc, Garner, NC
"People with MS feel cheated. they want someone to blame: blame God, blame somebody. I take a pragmatic approach. I can say, yeah, you’re cheated. But I can’t tell you who cheated you.”
Ann and Marc’s Garner home, tucked into a cul de sac in the Raleigh suburbs, is setting for a funny, emotional and honest rumination over a troubling possibility in disease- does fate exist? This couple often calls it the luck of the draw. Both have MS. Both were painfully divorced when they met on a blind date. It could have never happened. But even that first date, marred by a sitcom-worthy stomach bug and their resistance to dating someone with the same affliction, seemed to signal something about fate.
Rather than feel cheated by the hand they were dealt, they refuse to let illness define them. Ethics with an edge, Marc calls it and it entails a certain degree of snark, support, knowledge and trust. He introduces a theory in counseling called the 100% theory. We want to be at our best all the time; MS can be compromising in that regard. But this couple, so warm, so in love, in a house filled with awesome dogs and art... they like the hand they got. The dollar bill here was one of Ann’s family rituals- it was sent between siblings for birthdays for years, and eventually retired to the living room, framed and frozen.
Rather than feel cheated by the hand they were dealt, they refuse to let illness define them. Ethics with an edge, Marc calls it and it entails a certain degree of snark, support, knowledge and trust. He introduces a theory in counseling called the 100% theory. We want to be at our best all the time; MS can be compromising in that regard. But this couple, so warm, so in love, in a house filled with awesome dogs and art... they like the hand they got. The dollar bill here was one of Ann’s family rituals- it was sent between siblings for birthdays for years, and eventually retired to the living room, framed and frozen.
Kay and Bruce, Asheville, NC
"Job held his fist up, asking ‘Why, why, why?’ to which God responded, ‘You’re not asking the right question’."
In the twisting mountains of NC’s kookiest town, I visited Kay, a clinical psychologist and ex-tennis pro whose bucolic home belies the challenges of living with her chronic illness, as well as her husband’s, Bruce, terminal stomach cancer. One sunlit afternoon with Bruce, Kay, and Kay’s beloved partner in dog therapy, Misha, I asked them about providence, faith, and why we bother inviting love in when life is so cruel. This couple, tested by (and soon to be separated by) forces we can never understand, are significant to me because I began to truly face what I wanted from this journey.
Bruce died in December 2011- I speak to Kay sometimes, and she misses him, unbearably. But in this moment, in the summer before, Kay and her sweet Misha embrace and things feel peaceful.
I took pictures of the “his-and-her easy chairs” in the living room when I first arrived. I liked the natural and long-term image of them, before I knew Bruce would pass soon. This is his chair. I debated including an empty chair. It felt maudlin and fake and disrespectful.
But I think about Bruce almost everyday, and look at this picture often, how stable, soft and real it is. I only met him for a few hours, once. But it’s a loss more people should know about, because he was so strong in his faith and the love of his woman. I am so grateful to have spent time with him and Kay. I included this chair in the colorful, funky collage of Asheville because it is the thing I remember most.
lt’s them I think about when I wonder if I’m making any kind of difference with this project, if I can do justice to any of these wonderful people who want to help me.
Bruce died in December 2011- I speak to Kay sometimes, and she misses him, unbearably. But in this moment, in the summer before, Kay and her sweet Misha embrace and things feel peaceful.
I took pictures of the “his-and-her easy chairs” in the living room when I first arrived. I liked the natural and long-term image of them, before I knew Bruce would pass soon. This is his chair. I debated including an empty chair. It felt maudlin and fake and disrespectful.
But I think about Bruce almost everyday, and look at this picture often, how stable, soft and real it is. I only met him for a few hours, once. But it’s a loss more people should know about, because he was so strong in his faith and the love of his woman. I am so grateful to have spent time with him and Kay. I included this chair in the colorful, funky collage of Asheville because it is the thing I remember most.
lt’s them I think about when I wonder if I’m making any kind of difference with this project, if I can do justice to any of these wonderful people who want to help me.
Mark, Innerer Klang Letterpress, Asheville, NC
"If you are looking for uplifting tales of resolute hopefulness I may not be someone you would want to talk to."
Contrary, I had to talk to him. And really, my time with Mark yielded some beautiful impressions. Innerer Klang was Wassily Kandinsky’s thing, related to his own famous disorder (synesthesia, sort of where your senses are seemingly crossed; you can smell B flat, taste green). Loosely, you can take it to mean “inner value.” Innerer Klang is in Asheville’s river arts district, a chicly industrial neighborhood next to the French Broad River. The studio is a cramped ode to a fading art, romantic in its drawers of tiny metal bits, antique scales, dried drips of ink on its imperial centerpiece. I sat among this chaos of material to get a rudimentary letterpress lesson, and discover a man much softer than first impression. Contrary to his email, Mark exudes hope and simple love of his lonely art and almost lost medium. His life is much harder now than it used to be as a handsome Boston musician- especially when flooding in NC destroyed the entire shop almost immediately after he moved in in 2004. But, amazingly, one table filled with precious work floated. Sometimes we can have faith that things will work.
We cannot guarantee that of our bodies; so be grateful, consider it innerer klang, transcend limitations and giving even the smallest thing meaning.
We cannot guarantee that of our bodies; so be grateful, consider it innerer klang, transcend limitations and giving even the smallest thing meaning.
Paul, Adrian’s Landing, CT
“You don’t doubt him? You don’t hate him?”
“No. I thank Him for giving me a purpose.”
Faith became the curious centerpiece for me here, and it came in the form of an effervescent and infectiously positive young singer and activist. Owing most of his success and good spirit to his family, AAA (for all the times his symptoms made him a comically terrible/dangerous driver) and God, Paul is unlike anyone I’ve ever met. I gawk at his optimism and how he considers the myriad things that he’s gone through- gastric bypass surgery, misdiagnoses- and how he simply says they just make him ‘more interesting’. I began considering that maybe God is looking out for this guy. I mean, if you almost drive off the Cross Island because MS fatigue made you doze off in the fast lane, it’s conceivable there’s a cosmic hand somewhere.
Those lucky moments outshadow any grief or self pity he feels. His positivity and certainty echoed on the Connecticut bridge we were under to hide from the rain. Paul, myself and his fabulous aunt Michelle spent 2 hours laughing and posing under there. Paul stays with you. I multiplied his smile because it is so friggin fantastic.
I came home, pondered if my atheism was partly anger, fear, an actual belief I didn’t want to deal with. Maybe there is a vessel amongst us. Maybe they might be picking up the slack of forgiveness, acceptance, and faith for those of us who still don’t get it.
Kathy, wife of Judi, Mount Washington, NH
"You don’t step in the same river twice."
I’m friends with a liberal married lesbian dog-trainer couple living in rural New Hampshire who met at Girl Scout camp 40 years ago. It’s awesome. Picture it, 1970’s New England woodlands: Kathy and Judi’s secret nightly hikes to discover the biolumenescent phenomenon of foxfire led them to a lifelong bond of friendship and love, even with drama-filled relationships and miles between them for years at a time.
December in New Hampshire is earnest, white and F’in freezing. I drank Jameson, ate homemade cookies, played with lots of pets and heard the history of a relationships that has seen its share of upheavals. One of which is Judi’s near decade living with MS. Her partner of 20 years and wife of 12, Kathy, is a stoic and pragmatic ex-military member and I hang on her words. At their home, Wolfwood, I get frank insight into the mind of a caregiver and what it takes to make love keep going, as painful and unpredictable as it is. Life is a river, Kathy believes- impossible to control, never the same. But, on the bright side, there’s always another chance to do things different, better.
December in New Hampshire is earnest, white and F’in freezing. I drank Jameson, ate homemade cookies, played with lots of pets and heard the history of a relationships that has seen its share of upheavals. One of which is Judi’s near decade living with MS. Her partner of 20 years and wife of 12, Kathy, is a stoic and pragmatic ex-military member and I hang on her words. At their home, Wolfwood, I get frank insight into the mind of a caregiver and what it takes to make love keep going, as painful and unpredictable as it is. Life is a river, Kathy believes- impossible to control, never the same. But, on the bright side, there’s always another chance to do things different, better.
5th Annual Healing and Moving for a Cure -Levittown, NY
This was hosted by Lisa, a Long Island yoga teacher with MS who must practice the principles many people take for granted in yoga. It benefited the Kathleen Valachi Memorial Fund for Home Health Aide Assistance Program. The program focuses on those with MS requiring home health aide assistance, a boon to caregivers, patients and families. My own mother’s nurses helped my father avoid his one true heartbreaking fear: having to put her in a nursing facility.
Lisa had recently recovered from a horrifying relapse before the event, and was sent home to 3 kids. She was denied a home health aide, never received speech therapy, occupational therapy and was limited to only 6 visits of physical therapy. She was unable to walk, cook or complete simple tasks. It was up to her friends to take care of her. Not everyone has that luxury, especially those that have become isolated or abandoned due to their illness.
It is a broken system that denies humane coverage and help to the neediest.
The event moved me a great deal. It raised money, of course, but it united a variety of abilities, practices and stories. It brought awareness to a community, to the body and mind. Yoga in NYC is a competitive, strenuous and anxious practice- I know I frequently checked my IPhone during shavasana. But here, I watched a woman affected deeply by MS symptoms work hard, so hard, to get into Warrior I that I felt ashamed. Yoga is meant to balance, align and heal. Watching the work and love of the attendees, I remembered that balance is more than physical.
Lisa had recently recovered from a horrifying relapse before the event, and was sent home to 3 kids. She was denied a home health aide, never received speech therapy, occupational therapy and was limited to only 6 visits of physical therapy. She was unable to walk, cook or complete simple tasks. It was up to her friends to take care of her. Not everyone has that luxury, especially those that have become isolated or abandoned due to their illness.
It is a broken system that denies humane coverage and help to the neediest.
The event moved me a great deal. It raised money, of course, but it united a variety of abilities, practices and stories. It brought awareness to a community, to the body and mind. Yoga in NYC is a competitive, strenuous and anxious practice- I know I frequently checked my IPhone during shavasana. But here, I watched a woman affected deeply by MS symptoms work hard, so hard, to get into Warrior I that I felt ashamed. Yoga is meant to balance, align and heal. Watching the work and love of the attendees, I remembered that balance is more than physical.
Jason, Memphis, TN
"The wobble only adds to the swagger."
It was in this hot, dirty and angry city I was jolted by the concept of failed expectations. A relevant lesson for a photographer and writer: what you calculate to create is never what you actually create.
Jason, a tattooed, snarky ex-frat boy had endeared himself to me immediately on Facebook. With his middle finger extended and his completely un-PC approach to living with MS (using the word ‘cripple’ with abandon, I had to meet this guy. He wasn’t gentle or sweet, hadn’t seemed to find his Purpose, and I loved the ‘fuck off’ attitude he gave the diagnosis. That was the photo I plotted. However, what I got upon arrival was not what I expected, either Memphis itself or the man I met. I had a very uncomfortable clash with some wedding guests immediately, the streets were vacant, men in cars would approach and solicit me. The ticket taker at Graceland was shocked that a “lady” would come to Memphis alone. Memphis was scary. And not fun. The zoo was fly, though.
And who climbed out of the SUV was not the young, hot, able-bodied gunslinger I’d met online. He was young and hot, for sure; however, he was also deep in the throes of an exacerbation, his speech difficult and jokes slow to come from his quick mind to his mouth. His cane was necessary. His body, that day, inhibited.
It was unfair of me to calculate who I’d meet. But I turned a corner in my journey here. I noticed last night these photos are not very happy. The subjects look sad, or caged, or lost. It’s not the Memphis I read about. Jason reminded me, as an artist and person, to be honest. I planned a portrait of hip vitality; but in photography and storytelling, as in life, there’s no control. The picture I took, the person I got, was something darker, deeper, and much more real. His mom loved this shot.
Jason, a tattooed, snarky ex-frat boy had endeared himself to me immediately on Facebook. With his middle finger extended and his completely un-PC approach to living with MS (using the word ‘cripple’ with abandon, I had to meet this guy. He wasn’t gentle or sweet, hadn’t seemed to find his Purpose, and I loved the ‘fuck off’ attitude he gave the diagnosis. That was the photo I plotted. However, what I got upon arrival was not what I expected, either Memphis itself or the man I met. I had a very uncomfortable clash with some wedding guests immediately, the streets were vacant, men in cars would approach and solicit me. The ticket taker at Graceland was shocked that a “lady” would come to Memphis alone. Memphis was scary. And not fun. The zoo was fly, though.
And who climbed out of the SUV was not the young, hot, able-bodied gunslinger I’d met online. He was young and hot, for sure; however, he was also deep in the throes of an exacerbation, his speech difficult and jokes slow to come from his quick mind to his mouth. His cane was necessary. His body, that day, inhibited.
It was unfair of me to calculate who I’d meet. But I turned a corner in my journey here. I noticed last night these photos are not very happy. The subjects look sad, or caged, or lost. It’s not the Memphis I read about. Jason reminded me, as an artist and person, to be honest. I planned a portrait of hip vitality; but in photography and storytelling, as in life, there’s no control. The picture I took, the person I got, was something darker, deeper, and much more real. His mom loved this shot.
Vanessa and Lucille, Massapequa, NY
"Our story is that, no matter the degree, we are fighting this together."
A mother and daughter with the unique bond of a shared MS diagnosis. Lucille, 59 and lovely in that feminine, Eastern European way, was diagnosed about 12 years ago, and is now in a wheelchair. She has lost the use of her right hand and on the day I visited, was a little more aloof than her daughter. She is quiet, doting, and her love for her grandsons is mutual. She is also patient; she has been waiting for stem cell therapy for 7 years. The agony of waiting is unimaginable, and I am furious thinking of how moneyed Conservative values will, as always, fight to defer hope for so many people who could be helped.
I had met her daughter, Vanessa, through a mutual friend who remembers Vanessa as an “artsy”, slightly rebellious high schooler. I don’t necessarily see the punk haircut in this bubbly, positive, ultracool mom serving chicken nuggets to a 3 year old. But she is definitely a fighter. Converse to her mom, she experiences symptoms and weakness on her left. She has to fight fatigue, uncertainty, fear. And, I am sure, the frustration of suffering invisibly. People with Relapsing-Remitting MS have the added burden of often “looking ok”- getting glances for using handicapped parking spots, for bailing out of social events. Sometimes, a wheelchair is easier because people know what to expect.
It’s these parallels and differences that spoke to me in this shot. Mike is an awesome kid- sharp, kind and and funny. Here, he’s engaged in technology, games and possibilities. Vanessa engages, because she feels good today and appreciates every second of it. Lucille is somewhat more removed- I can’t quite read her expression. There is love, but there is distance. Each has an inner life that a camera can’t quite catch, but it’s neat when you catch those three lives together.
I had met her daughter, Vanessa, through a mutual friend who remembers Vanessa as an “artsy”, slightly rebellious high schooler. I don’t necessarily see the punk haircut in this bubbly, positive, ultracool mom serving chicken nuggets to a 3 year old. But she is definitely a fighter. Converse to her mom, she experiences symptoms and weakness on her left. She has to fight fatigue, uncertainty, fear. And, I am sure, the frustration of suffering invisibly. People with Relapsing-Remitting MS have the added burden of often “looking ok”- getting glances for using handicapped parking spots, for bailing out of social events. Sometimes, a wheelchair is easier because people know what to expect.
It’s these parallels and differences that spoke to me in this shot. Mike is an awesome kid- sharp, kind and and funny. Here, he’s engaged in technology, games and possibilities. Vanessa engages, because she feels good today and appreciates every second of it. Lucille is somewhat more removed- I can’t quite read her expression. There is love, but there is distance. Each has an inner life that a camera can’t quite catch, but it’s neat when you catch those three lives together.
Shannon, 11th Annual MS Motorcycle Ride, Southington, CT
"I didn’t want to accept MS. If I did, it would become real."
Shannon has lived with MS since she was 23, and her positivity is a work in progress. MS, she says, robbed her of the life she was ready for. I ached for that girl with hopes and aspirations, working full-time and taking college courses. She does this work so that no more 23- year old women will ever hear that diagnosis again.
Shannon got on that front bike with Bill Windish to lead by example. She is not a victim. Look at that smile. She is not a victim.
For the MS Walk her team, “The MS-Kateers” is one of the top fundraising teams in Connecticut. Support groups, a gorgeous boyfriend, the MS Society, a positive attitude and a great neurologist- that's how she does this work.
The ceremony started, the national anthem echoing in the drizzling rain while the crowd of hundreds stood silently. Bill took the mic, thanked the crowd. Diagnosed in ‘06, he spoke eloquently and humbly of the ride’s power. The bikes set off in an emotional, unified roar, rumbling the concrete, and were gone for 60 miles. We spectators smiled at each other, the image seared in; although now just people in a rainy parking lot, hoping for good news.
Karen, Iron Maiden and VP of Communications for
NMSS, Connecticut Chapter
"We are on earth to build meaningful, lasting relationships. We are here to help one another navigate through the best and the worst of times."
A sight-motorcycles, inventive facial hair, the elderly and infants sharing a parking lot to raise awareness. I brought my father, whose experience with MS never involved community- they started staying in when her illness worsened. I was here to meet Shannon, an activist and Karen, an Iron Maiden and the event’s organizer. Karen was being courted by press, hugging supporters, laughing on her Harley. She’s electrifying. She’s harnessing social media in tribute of her grandmother (who lost her battle with MS in her 60’s) as well as the young people she met when she began working for the National MS Society. Pairing media relations expertise with love of riding, she’s come up with a fundraising campaign both entertaining and educational- The Iron Maidens. It’s a brilliant, sexy campaign, basically hot, savvy bike-riding women raising money- more than $40,000 as of that day. Chalk it up to the power of women in leather pants and social media ingenuity. Imagine, a few months of posting photos and inspiring messages, activating the mostly blue-collared motorcycle community and raising thousands.
Susan of Tom
"1963: We hardly talked...but I still can see him standing there."
I imagined them as teenagers, supernaturally wholesome, at the church fair where they met. He attended a private high school on a basketball scholarship, she a shy junior high school student.
Pulled over to a group of boys by a friend, Susan met Tom. Surrounded by his friends and an air of masculine promise, she fell in love with him, her future husband and the father of their daughters. Who could believe such massive, protective wholeness could transform into the person I met 40 years later?
In 2011, after primary progressive MS has stolen Tom’s body and voice, me and 3 generations of the Labarbera family converge in a tranquil New Jersey kitchen. It is an unlikely classroom; setting for my lessons in the bleakly terrifying early years of MS diagnoses and a couple’s loyal love. Tom isn’t in the foreground here, I know. I think it was partly because he didn’t speak much that day, couldn’t. Partly because this was still very early in the project and I was, deep down, afraid to get too close to this type of MS, and what it brought back. How we all called my father a saint, negating my mother. Susan is no saint. She's a woman in love, which is better.
Pulled over to a group of boys by a friend, Susan met Tom. Surrounded by his friends and an air of masculine promise, she fell in love with him, her future husband and the father of their daughters. Who could believe such massive, protective wholeness could transform into the person I met 40 years later?
In 2011, after primary progressive MS has stolen Tom’s body and voice, me and 3 generations of the Labarbera family converge in a tranquil New Jersey kitchen. It is an unlikely classroom; setting for my lessons in the bleakly terrifying early years of MS diagnoses and a couple’s loyal love. Tom isn’t in the foreground here, I know. I think it was partly because he didn’t speak much that day, couldn’t. Partly because this was still very early in the project and I was, deep down, afraid to get too close to this type of MS, and what it brought back. How we all called my father a saint, negating my mother. Susan is no saint. She's a woman in love, which is better.
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Support NadineNadine is an accomplished writer and photographer. She is also still raising money to complete her book ~ Visit the links to the right to view more of her work, follow, contact, and contribute to her project ~ She would love to hear from all of you!
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