We’ve Never Seen Multiple Sclerosis This Way Before
After 20 years of living with multiple sclerosis (MS), Nadine Friedman-Roberts’ mother passed away from complications of the disease. One year later, Friedman-Roberts began a journey that brought her closer to understanding her mother and the disease she kept to herself.
“She and I never spoke, really. She lived with a lot of anger and denial; acknowledging that the disease lived with us was equal to her failing us, so she refused to discuss it. Thus, MS was terror, shame and sadness,” Friedman-Roberts explained in an email to The Mighty.
“I become cloistered and angry and confused… Only after she died was I really ready to talk to her about it. People are great with timing that way. I wanted some way to connect to her while confronting some of my persistent, 20-year shame and guilt,” she continued.
Since 2011, Friedman-Roberts has traveled all across the U.S., photographing people who have MS and inviting them to share their stories with her. Her collected photos and stories will be published in a book called “Whiskey, Waterfalls and a Radio Preacher,” and according to her Go Fund Me page, partial proceeds from the book will go to MS research.
These are just a few photos from her project (and soon-to-be book):
“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, Rockford, Michigan
“The wobble only adds to my swagger.” — Jason, Memphis, Tennessee
“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.” — Jessica, Harlem, New York
“It’s about the moment and enjoying life right now… a little denial helps too.” — Lev, Brooklyn, New York
When asked about God: “You don’t double him? You don’t hate him?” “No. I thank Him for giving me a purpose.” — Paul, Adrien’s Landing, Connecticut
“Our story is that, no matter the degree, we are fighting this together.” — Vanessa and Lucille, Massapequa, New York
When Friedman-Roberts first started this project, she expected gorgeous photos and flattering narratives of bravery and overcoming adversity. What her expectations hid were her bigger fears — “of becoming close to my sadness, of disappointing these people like I disappointed my mother,” she explained. She was also afraid of really confronting MS — “having to accept what happened to my mom, because dancing around it with nice photos and fundraisers is easier than listening to that ugly voice, saying that you failed someone you love,” she told The Mighty.
But what she found in those interviews with people was more than just beauty and bravery. She found people who offered vulnerability, honesty and friendship. She found stories of pain and joy, grief and freedom. And she found a better understanding of disease as a whole.
“I understand now that disease is never the one thing that causes sleepless nights,” she said. “MS is intense, but I can’t give it that much credit anymore… What keeps us up is the entirety of a life. The stuff you love and fear losing, some really f*cking unfair things and the little funny moments from that day. I only saw my mother as her disease, but if I had the chance now, I wouldn’t ask her ‘what it was like.’ I’d ask her what happened that day.”
Learn more about Friedman-Roberts’ project here. “Whiskey, Waterfalls and a Radio Preacher,” her book of photographs and stories of people living with MS, is due to be published this summer.
Read about the one moment on her journey across the U.S. that taught her the most about multiple sclerosis: Why a Taxi Ride Taught Me an Important Lesson About Disease and Grief.
Clarification: A previous version of this article stated that proceeds from her book are going to the National Multiple Sclerosis Society. According to her Go Fund Me Page, partial proceeds are going to MS research.