The Art and Grace of Battling Multiple Sclerosis

Twenty-five years ago, my aunt Marjorie was diagnosed with multiple sclerosis.

In my extended family, we don't talk often. We don't know about each other's day-to-day. Reunions are few and far between. There is not a lot of drama, and we like to keep conversations comfortable. But the one thing I know for sure: when shit hits the fan, we are here for each other, and we are a witness to each other's lives.

This weekend, I'll be supporting Marjorie and other people diagnosed with MS in the annual "Walk MS" fundraising walk along the Chicago lakefront, where I spent my college years. $$$ PLEASE MAKE A DONATION, if you can. $$$

I am so proud to have my aunt Marj in my life, because despite any superficial interactions we've had over the years, there is a depth of love and appreciation. And a genuine feeling of being there. (Thanks, Marj.)

Over the years, she has endured impaired vision, chronic pain, limited mobility, imbalance, fatigue, physical weakness, broken bones and countless other symptoms, caused by damage to her nervous system. (Not to mention the chemotherapy treatments and experimental medicines.) But she has never displayed a shattered spirit. I am in awe of her optimism, positivity, perspective and humor.

Her story is one of many. And with setbacks come great successes: a loving husband, a beautiful son, a successful career, wonderful friends. 

Back in college, I used to house-sit for aunt Marj, who lives in the Chicago suburbs, while she was out of town. A memory that stands out: she has a magnet on her fridge that says "Never never never give up."

I am reminded of other people like her who have faced illness and never gave up. I know I take my health for granted, and I have to pause to remember that it can all be taken away, with one diagnosis.

In honor of my aunt Marj, who is a writer and singer and mother and sister and wife and general creator and nurturer of awesomeness, I wanted to showcase some creative ways of raising awareness about this life-altering disease.

Oh, and P.S.: Fuck you, multiple sclerosis.

Art by Kirsty Stevens.

Art by Kirsty Stevens.

UK-based artist Kirsty Stevens uses the shapes of harmful lesions that are visible on MRI scans of her brain to etch designs onto glass, paper, wood, fabric and other surfaces. (See more at Vanilla Ink Studios.

Art by Elizabeth Jameson.

Art by Elizabeth Jameson.

Similarly, Elizabeth Jameson uses her MRI scans to inspire work in etchings, multimedia and textiles. (See her portfolio.)

Photo via "Being".

Photo via "Being".

"Being" is a film about a young boy, named Buddy, who is a caretaker for his mother, who has multiple sclerosis. He is bullied at school and finds solace in music from the 1960s. (Learn more about the project.)

Photo by  Patricia Lay-Dorsey .  

After she was diagnosed with MS at age 45, Patricia Lay-Dorsey started taking self-portraits, to process her experience. "Art has always been my most effective therapy," she said. (See more of her photographer series, "Falling Into Place".)

"Gallop," a film directed by BAFTA-nominated film director Michael Pearce, shows the life-changing impact of a diagnosis with MS, as told through a love story between two young adults. The film was launched by Shift.ms, a web-based charity.

Thought Sort, another project by Shift.ms, is an online tool that helps people recognize, manage and adapt negative emotions caused by negative thoughts, using methods of cognitive behavioral therapy (CBT).

Advertising agency Grey Australia created a campaign, "This Bike Has MS," to demonstrate the unpredictable symptoms of multiple sclerosis, using the metaphor of a misaligned bicycle.

This is my sixth blog post in a series for #The100DayProject, a project by Elle Luna. I'm naming it the #100Days ofBenevolent: an attempt to kickstart my daily blogging habit, which has been idle for years.

 

The Healing Power of Poetry

When life gives you lemons, release a high-profile HBO special with celebrity cameos and a "visual album" to stream exclusively on Tidal.

Beyonce's "Lemonade" had the Beyhive buzzing all weekend, with people speculating about infidelity and marital strife, applauding #blackgirlmagic and #blacklivesmatter, and dissecting the personal and political implications of an unfolding pop culture saga.

No doubt, "Lemonade" is a statement on being a black woman in America. It includes an audio clip of late civil rights leader Malcolm X, who is heard saying: 'The most disrespected person in America is the black woman." Later, the mothers of Mike Brown, Trayvon Martin and Eric Garner appear, holding framed photos of their deceased sons.

The stylized music videos are interspersed with spoken word poetry by Kenyan-born, Somali-British poet laureate Warsan Shire. The interludes are adapted from some of her poems, including "For Women Who Are Difficult To Love" and "The unbearable weight of staying (the end of the relationship)."

What gives "Lemonade" emotional depth is the use of Warsan's poetry as the voice of the protagonist, both a truthseeker and nurturer.

ANGER // "I don't know when love became elusive. What I know is, no one I know has it. My father's arms around my mother's neck, fruit too ripe to eat. I think of lovers as trees... growing to and from one another. Searching for the same light."

ACCOUNTABILITY // "Your mother is a woman and women like her can not be contained. Mother dearest, let me inherent the earth. Teach me how to make him beg. Let me make up for the years he made you wait. Did he bend your reflection? Did he make you forget your own name? Did he convince you he was a god? Did you get on your knees daily? Do his eyes close like doors? Are you a slave to the back of his head? Am I talking about your husband or your father?"

FORGIVENESS // "Baptize me... now that reconciliation is possible. If we're gonna heal, let it be glorious. 1,000 girls raise their arms. Do you remember being born? Are you thankful for the hips that cracked? The deep velvet of your mother and her mother and her mother? There is a curse that will be broken."

Warsan regularly teaches poetry workshops to uncover and heal trauma. She has written on painful subjects, from her struggles with bulimia to her experience as an undocumented refugee.

"I know that poetry has saved my life," she has said. "It helps me make sense, articulate, heal, revisit, rewrite, reimagine, celebrate, curse, ask, feel and understand."

In an interview, Warsan said "apathy is making the world rot." If apathy is the root of destruction, then feeling is the perfect antidote, the first step towards creation.

For the sake of black women, faithful lovers, growing girls, grieving mothers, yes, let's hope.

Lesley McSpadden, mother of Michael Brown, who died August 2014.

Lesley McSpadden, mother of Michael Brown, who died August 2014.

Sybrina Fulton, mother of Trayvon Martin, who died February 2012.

Sybrina Fulton, mother of Trayvon Martin, who died February 2012.

Gwen Carr, mother of Eric Garner, who died July 2014.

Gwen Carr, mother of Eric Garner, who died July 2014.

This is my fourth blog post in a series for #The100DayProject, a project by Elle Luna. I'm naming it the #100Days ofBenevolent: an attempt to kickstart my daily blogging habit, which has been idle for years.

The Pitch: 1 Foto 1 Family

This post is part of "The Pitch" series, which follows up with socially conscious creatives who submitted to the inaugural Benevolent Media Pitch Night competition in November 2012. At the event, held in Washington, D.C., 13 different projects and organizations presented 3-minute proposals on how to use storytelling and design for social good, for a chance to win funding to make their ideas a reality. (Read about all the winners and finalists here.) As we gear up to host another Pitch Night during our festival in late-September, we want to know: Where are they now? What's the status of their project? What lessons have they learned? Do they have any requests for collaboration?  Stay tuned!

Meet Arianne Neigh, the creator, team leader and "wandering adventurer" behind 1 Foto 1 Family, a photo documentary project that aims to capture cultural connections through family. Arianne is privileged to have walked, paddled, skipped and surfed through more than 40 countries across the globe. Having not much more than her trusty headlamp and 10-year-old flip-flops, she wanted to find a simple gift for her gracious hosts while traveling. Arianne started giving family portraits as a logical token of her appreciation. This is where 1 Foto 1 Family was born.  Although Arianne is far from a professional photographer, she does have a remarkable lack of filter and mystery helping her to become friends with anyone. These anti-superhero powers are critical for weaving stories based on her experiences, creating bonds between unexpected people in far-flung places, and eating copious amounts of street food. Arianne hopes that 1 Foto 1 Family will allow her to share her life enhancing experiences and create understanding between cultures by telling the story of our families. To learn more about 1 Foto 1 Family, follow their work on Facebook.

Arianne Neigh presents The Global Archive Project" at Benevolent Media Pitch Night 2012. Photo by Ben Droz.

What is your project you pitched and why did you start it? Are you still working on your project and if so, what have you been doing to date?

I pitched “The Global Archive Project” last November, which was a project to capture family stories and portraits with a goal of showing that, although we look very different, the stories of our families can create understanding between cultures. This was really an idea that had been in the back of my mind for several years, but I hadn’t done anything more formal than chatting with a few friends about it. I decided that the Benevolent Media Pitch Night was a great opportunity to stop talking and to take a chance to do something.

I had such amazing support from our partners at Earthship Pitaya Festival during the preparation for Pitch Night that I decided to move forward. My boyfriend, Jake Lescher, joined the project, we changed the name to 1 Foto 1 Family, got my sister involved as a graphic designer, and even launched a Kickstarter campaign. Although we weren’t successful with Kickstarter (we learned a ton about what to do and not do,) our family and our friends at Earthship Pitaya Festival were so supportive that we decided to alter the design, simplify the project, and take the leap of faith to begin.

In February, we launched the project in El Carizal, Nicaragua where we volunteered at the festival, photographed families, and connected with new and old friends. We took portraits of families with special needs children, as well as helped put on the festival, which attracted more than 3,000 people and helped raise thousands of dollars for programs in the community. It was a rewarding experience for the two of us and helped us beta test the feasibility of our project.

Although I know this will likely be a lifelong endeavor, I hope that I can continue to collect stories about families. I have just returned from a trip to Southern Africa, and I am compiling that work and finishing some documentation from Nicaragua.  These will become part of our Twitter and Facebook pages, where we will begin to share the projects stories.

Do you have any requests for collaboration or calls to action? If so, what?

Right now we are looking for our next opportunity.  Perhaps, we will seek something closer to home and work with underserved parts of D.C. Hopefully, we can identify a partner who is already working in the target community. We have found this to be critical to the success of our projects by ensuring that we are sensitive to our hosts and providing them with something that will make them happy.  We want to make sure we are operating through exchange and not giving or taking on either end. At its heart, 1 Foto 1 Family is a collaboration. I would really love to have another member who is passionate about other cultures, has a fabulous eye for portrait photography, and wants to give back to others.

What have you learned from your work thus far?

Every time I work abroad, I remember to be patient, flexible and gracious. I learn to take advantage of opportunities but never of people. I learn to love a little more and to treasure the things that make me, and everyone around me, unique. I’ve learned that I don’t have to be perfect. I’ve learned to just go for it!

How has your perception of family changed from undertaking this work?

I am continually amazed and surprised by the strength of families, even in times of difficulty or maybe in the face of difficulty. Families are synergistic; the whole amounts to more than the parts. By nurturing the whole, we build strength together. I don’t think I have been able to capture that effectively yet, but I know it is there.

Film Review: In "The Square," the Revolution Will Actually Be Televised

This post is part of Benevolent Media’s ongoing coverage of the 2013 Sundance Film Festival in Park City, Utah. For more information, read “The Benevolent Guide to the Sundance Film Fesitval.”

Filmmaker Jehane Noujaim's riveting firsthand account of the Egyptian revolution, "The Square (Al Midan)," took home the Audience Award for World Cinema Documentary at the Sundance Film Festival last week. Her eye-popping, ear-jolting, soul-pumping documentary, filmed in the heart of Cairo's Tahrir Square over the past two years, tells the story of young Egyptian revolutionaries seeking new hope for their country. It takes over where the previous two generations of activists left off, trying to overthrow the regime. But this time, there's a distinctly millennial twist: One of the undercurrents of the film is the role that media, art and technology plays in uniting people around a cause.

Noujaim is no stranger to the topic. Her 2004 documentary, "Control Room," examined the perception of the United States's war with Iraq, with an emphasis on Al Jazeera's news coverage. That film won Noujaim the coveted TED Prize, which allowed her to make her wish come true: to create a day in which the power of film could form a global community of peace. This day was called Pangea Day, a live video-conference with music, film and speakers, hosted in cities all around the world, including Cairo, New York City and Rio de Janeiro.

Street art is a recurring element in the film. Photo via Kickstarter.

One of the people followed in "The Square," the actor Khalid Abdalla ("The Kite Runner"), is a prominent leader in the protests and demonstrations. Being fluent in English, he is often interviewed by Western newscasters. Coming from a family of activists, Khalid represents the modern, multi-cultural, border-crossing voice of the Arab Spring. At the activist's headquarters, he encourages local mediamakers to capture evidence through digital film. They record what they see and post it on YouTube. One clip is a difficult-to-stomach video testimony of one of their friends, a brutally beaten and tortured protester. Abdalla and his crew are often seen from the vantage point of the impassioned observer, perched high on a balcony, aiming a camera like a sniper, targeting the story of the Square down below.

Interspersed throughout the film are recordings from state-owned news broadcasts--the media cronies--juxtaposed against raw footage of citizen-generated documentary--the media revolutionaries--armed with their laptops, headphones, cell phones, Skype chats and YouTube videos. In one scene, the revolutionaries project a home-edited video to commemorate their fallen brethren.

The film is divided into distinct chapters. Each cinematic respite features brief scenes of street artists, in the foreground of paint drips, brush strokes and aerosol stencils, creating murals that depict people fleeing from tear gas or a snake ensnared around a military tank. Music and song is also a common thread throughout the chaos.

Pledge $5 to "The Square" Kickstarter campaign and receive a digital download of a graffiti stencil based on Tahrir's street art. Photo via Kickstarter.

Now that the film has entered the world stage at Sundance--the premiere received a standing ovation--"The Square" is not ready to rest on its laurels. The filmmakers are calling on supporters to donate money so they can finish what they started, "supporting post-production facilities, editing, and the continued filming of current events in Egypt ." In their own words:

The time to tell this story is now. Egypt’s revolution is not over. From songs to graffiti, the Egyptian revolution is not just a flash, its a movement. That is why we're making this film. To really tell the story of what happened (and is happening) in Tahrir Square, in Egypt.

As they say in the film, “No one can tell our stories except for us.” We are duty-bound to ensure that the story of Tahrir Square is told by the people who lived it.

Support the film on Kickstarter here.

New Film Shows Girls Rising from Plight to Power

This post is part of Benevolent Media's ongoing coverage of the 2013 Sundance Film Festival in Park City, Utah. For more information, read "The Benevolent Guide to the Sundance Film Fesitval."

“Educate girls, change the world.” That’s the simple and powerful mission of the new documentary film and social action campaign Girl Rising, which was unveiled with a sneak peek trailer at a special event, “Creating Social Change with Film at the Center,” last Monday at the Sundance Film Festival.

The film follows the uplifting stories of nine girls from around the world, triumphing over obstacles to achieve an education. The voices narrating each vignette include Hollywood heavy hitters like Meryl Streep, Anne Hathaway, Cate Blanchett and Salma Hayek.

But it’s the relatively unknown people behind the scenes that are trying to make the movie a force to be reckoned with. The Girl Rising project was borne out of a collaborative effort, led by 10x10 and its strategic corporate partner, Intel. The film was created and launched by an award-winning team of former ABC News journalists, including director Richard E. Robbins, and executive produced by Tom Yellin and Holly Gordon of The Documentary Group and Paul Allen, the founder and chairman of Vulcan Productions, and CNN Films acquired the film in the spring of 2012.

Girls.jpg

A panel discussion organized at Sundance revealed perspectives from each step of the filmmaking process, from ideation to distribution. It included the following experts:

Shelly Esque, Vice President of Legal and Corporate Affairs, Intel Bonnie Benjamin-Phariss, Director, Vulcan Productions Richard Robbins, writer, producer and director Sumathi Balasubramanian, Program Officer, Adolescent Girls, United Nations Foundation Holly Gordon, Executive Director, 10X10 Scott Glosserman, Founder and CEO, Gathr Films

If you look at “girls,” as a systemic issue, the statistics are staggeringly depressing. For instance, there are 66 million girls who are not in school; 14 million girls under the age of 18 will be married this year alone; and 150 million girls are victims of sexual violence each year.

The first cut of an early concept of the film, which examined these dire big-picture conditions, was scrapped. “It was equal parts pity and passion and that makes for a film that doesn't really get far in the world,” director Robbins said. The only glimmer of hope was found in the individual stories of the girls themselves, which inspired the filmmakers to revamp their approach. Now, you'll hear less about the global problem and listen, instead, to the narratives of Amina, Yasmin, Senna, Suma, Ruksana, Mariama, Azmera, Sokha and Wadley. They are the ones with something to tell the world.

In the end, supporting the film is a catalyst to change minds, lives and policy, according to 10X10's Gordon. She asked: “How would I make an argument that giving us $10,000 would be better than building one school? How does funding an awareness project lead to building hundreds of thousands of schools?”

Social Buzz

During filmmaking, Twitter and Facebook were just starting to take off into the stratosphere of social media marketing--a key advantage for the 10X10 team.

“We needed to find our girls education super fans,” Gordon said. Her advice was “to be very targeted and have defined verticals that you want to attack, because if you try to do everything, it’s not going to work.”

What resulted was an intricate yet clear web of relationships, spun through social media and in-person events, that involved a corporate partner, Intel, who shared 10X10’s vision of creating a better educated world, NGOs that were already dedicated to the cause, and philanthropists who contributed funding to kickstart the project.

In October, for the International Day of the Girl, 10X10 created social action toolkits for communities to get involved in supporting the Girl Rising campaign, which resulted in more than 550 independently organized events worldwide. The revolution was brewing.

Corporate Leadership

Meanwhile, Intel leveraged its technology expertise, marketing savvy, human resources (it has about 100,000 employees worldwide) and philanthropy partners to support the film.

“We were making a big impact but not creating the noise," Intel's Esque said of her company's girls education philanthropy efforts. "We were excited about the opportunity to help shape the entire campaign."

Intel brought in the C-Level backing; the filmmakers retained editorial control. It was a mutually beneficial arrangement.

Nonprofit Champions

In the NGO world, it’s common knowledge that educating girls has the power to change the world. “The development folks knew that, but we were never successful in being able to message about it,” the U.N. Foundation's Balasubramanian said.

With the film at their disposal, girls-focused nonprofits have a better story to tell. And, more concretely, they will come closer to achieving their fundraising goals. Thanks to the 10X10 Fund for Girls’ Education, donations raised from the film will be distributed evenly among the nonprofit partners, including CARE USA, World Vision, Partners in Health, Plan International USA, United Nations Foundation/Girl Up, Pratham USA, Room to Read, and A New Day Cambodia.

Mass Appeal

Girl Rising will make its theatrical debut on March 7 and broadcast premiere on CNN in June. Screenings will also be made available on demand in hundreds of cities across the country through Gathr, a new Netflix-ish, Kickstarter-esque model for "bottom-up" theatrical distribution, as explained by its founder Glosserman.

On the big screen is where the filmmakers want audiences to watch the film. “You need to have a common experience in a theater; you need to feel the energy,” Robbins said.

More than a film, Girl Rising is a social action movement, and for that very reason, Robbins added, “the ending is still to be written.”