Nadine Friedman’s Preacher: a national project, is a book will unite photography from her travels with portraits of individuals touched by MS, reexamining what we believe about the meaning of ‘incurable’ and the fears surrounding it. All the stories will be available in 2015. Here’s a peek at the piece she wrote about Jessica, Pulp Nature co-founder!
It’s like having an uninvited guest in your house.
But if you feed it, be kind to it, you can live together. Maybe even nicely.
This nursery is a good place. There’s textures and stories, cuddly things, miniature shoes and history: of Jessica and Tamir’s life together, of generations before them, bits of heritage. Light floods the room from the Harlem courtyard outside their pad- those little lanes of quiet concrete between New York buildings, the gray contrary to the sweetness inside. A baby named GG lives here.
I visited Jessica what would be 12 days before she gave birth to GG, shorthand for Gloria-Gwendolyn Jeannie Peavy-Muhammed. The name is long, but this big-eyed baby with the blackest mop of hair and rosebud baby lips has yet to give her opinion on it. “Gloria is my father’s mother, Gwendolyn is my mother’s mother, Jeannie is my husband’s mother and we hyphenated our last names to represent everyone! It will take her forever to learn to spell and write it all, but it was important to us.”
The nursery is a collective, like the name. I ran my hand over the dresser and its comforting wicker braids, the wooden bars of the crib and soft blankets, imagining the baby who’d live here. “Her entire room is constructed by her grandmothers, great grandmothers, aunts and uncles,” Jessica says. “She’s a lucky girl.”
Jessica’s grandmother bought the dresser and lamp in the ‘40s; a wicker chair and side table came from Liz, her father’s older sister. Liz passed away four years ago. Knitted shoes (the ones in the photo, those tiny, electric pink bits) and blankets are from Aunt Taliah, and Aunt Monica provided stuffed animals and posters. The baby blanket’s printed with a photo collage; GG’s parents, their parents, their parent’s parents. People gone, people still here.
The room’s nucleus is the crib, from Aunt Judi, Jessica’s father’s sister. He gave it to Judi when she had her first child, over 20 years ago. Jessica wishes he, who’d passed many years before, was here to see this room and his granddaughter. “It’s hard not to cry when I walk in,” she said, “but I hope her late family members are watching over her.” GG’s name is long but it ensures presence.
Who will this baby be, with just a name to go on 12 days before? Her parents are artists: Tamir’s a member of the NYC film elite and Jessica has a remarkable CV of residencies and exhibitions, but neither are aristocratic about any of it. She confronts women’s relationships to their bodies, racial identity and the ways we parse truth amongst lies. Her feminist work subverts iconic imagery and sexuality, like a Marilyn Monroe in Timberlands, and her video work ruminates on sexuality and black female identity. Her work is brilliantly frank and incisive. In person, Jessica’s more reserved: low-voiced and mellow, her face is shyly, partially obscured by a Rapunzel sweep of hair. She is the kind of artist we need more of, a leader in a robust new map of women of color as culture-makers.
She plans to show GG her street performance in particular, as the baby’s been born into an era of disappearing physical engagement and community. Jessica wants her to experience that raw, guerilla energy of “non-mediated experiences where you look someone directly in the eyes and feel the texture of their skin when you reach out to shake a hand.” I remember finding a box of my father’s old college poetry in the laundry room; parchment-y and scrawled, I sat on my heels and read, in awe that my dad- my dad- once made something. Discovering your parent is a human, with vulnerabilities and ideas and drive to create, and maybe a little like you, is a rite. That must be so exciting for a mother, to share herself with her child.
I am curious about what GG will understand about her mother’s experience living with MS, as it took years after her death to separate my own mother from her diagnosis. In ‘89, MS was different, and thinking of my mother as anything but sick is still tough. There is more to go on today. Jessica allows that disease is a part of her life, but wants GG to be unafraid of it, to know RRMS lives with Jessica but doesn’t define her.
MS first visited during a 2004 trip to Six Flags. Her vision changed; particularly rude as she was two days from beginning an MFA in photography. Like having bad lighting or a lens issue, first there was blurriness, perhaps her brain’s screwy shutter speed; then light sensitivity overwhelmed, her internal ISO; then the color went away. “Turns out I had a doctor that said “’Black people don’t generally get MS. You most likely have Sarcoidosis. That’s what Black people get…. Turns out I have a brilliant Mother who said that was bullshit and sent me to a specialist in Ohio. Turns out I am, in fact, a black woman with MS!”
The first five years she wouldn’t let it in. She was young, and this wasn’t the plan. She stopped taking her meds and once took a hot bath that had a predictably horrible outcome. Her overall health spiraled by ‘09- paralysis, numbness, slurred speech joined depression, reclusion and paranoia. At one point, she couldn’t move at all for weeks.
Ignoring MS means certain failure. Jessica decided, instead, to have a future.
She accepted MS as an immutable but workable presence in her life. From 2010-2012, she began seeing a psychologist, changing her diet, adopting a modified exercise regiment. She made room. Kya Blackstone, a fizzy, dynamic digital entrepreneur and Jessica’s “autoimmune ally”, encouraged her to write about the experience. “She demanded I share what I had learned on a larger platform; I demanded that she be by my side through it all.” In 2013 they started Pulp Nature, a website dedicated to sharing resources, stories, frustrations and solutions to living with autoimmune diseases. Like the two women, it exudes style, humor and realism while building community around diseases that can render one invisible and imperiled: rheumatoid arthritis, lupus, Lyme. There’s fashion tips and articles like “Gluten-free is My Bitch” and it feels good to hang out there.
“I needed to hit those low points in order to feel ‘well’. Wellness is understanding everything is cyclical, a series of highs and lows and learning how to survive constantly moving between the two. It’s about mental and physical balance.” Identity is similarly holistic; her’s includes the bruises of those five years and the tacit, eventual agreement with MS to play nicely. Jessica healed by choosing truth amongst lies we’re told about ability, the future and this disease. In 2013, she became pregnant.
When deciding locations for photos, I ask people to choose a place that holds meaning. “Easy” she said, “the nursery.” I love the meditativeness of this photo, days before her life changed (again). I felt grateful to be there, soaking in her positivity and that sense of possibility inherent to motherhood.
Getting MS and becoming my mother was a constant loop in my brain, the idea of passing something onto a child whether it be her disease or my bitterness. I didn’t think about other hazards; Lyme Disease and multiple pregnancy losses were, therefore, enlightening surprises. I’m not terrified of MS anymore, nor as troubled by my mother, and I think truthfully about wellness. About wholeness. People like Jessica redefine these ideas for us, proving a diagnosis doesn’t count you out from a meaningful life, being a powerful person or tremendous parent. Wholeness is imperfect, obviously, because life still implies fear and unpredictable moments of pain. “Sure, I’m scared of her getting the disease, but I’m also scared she’ll get cancer or mental illness or an aneurism or heart disease or be struck by a stray bullet that comes through the window and pierces her crib while she sleeps peacefully at night.” Basically, she’s scared of everything because if it’s not MS, it will be something else. “I can’t save her from everything. All I can do is try to teach her positive coping skills so she can deal with whatever comes her way.”
Is that how it works? Is motherhood simultaneous terror and acceptance of everything? To Jessica, this energetic and resourceful woman, motherhood is “the most beautiful pain in the world. The most fruitful sacrifice of my life. An awareness that makes me delirious and a love that frightens me 24 hours a day.”
Love implies suffering and joy, and a happy home might be tempered with anxiety and the reality of loss. That is life, that is her life. But for now, in a little room abundant with family, she can just give GG the good stuff.