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Meet Mexico City’s Amputee Grammar Queen

After losing her leg to cancer, Paulina Chavira turned to her passion for grammar to make sense of the world.

Paulina Chavira, Mexico City’s grammar queen, is sitting in her office, having another fight on Twitter.

“People often get angry with me, saying things like ‘how can you correct me?’” she says. But Paulina feels driven. It’s just one of many interactions she’ll have online on a regular day. But not all are negative – Paulina gets comments and questions from educators, writers and the media, calling on her to advise them on issues of punctuation usage, accents, structure and more.

Being grammar queen is something of a new gig for Chavira. But she’s always had a passion for words.

Chavira checks Twitter.

In July 2013, when Paulina was 33 and had her first son began kindergarten, she read a tweet revealing that Mexico’s education ministry was going to accept public school textbooks into the country’s classrooms even though they were riddled with errors – 117 errors, to be exact. She took to Twitter to express her outrage, thinking, “How can this happen?” So she tweeted to her 400 followers.

The following day, major Mexican media outlets picked up on the issue, harshly criticizing the ministry for allowing a textbook with so many mistakes into public schools. But Paulina’s ire towards grammar mistakes isn’t just aimed one way. The day after, Paulina identified another issue, tweeting back to media sources: “Media outraged with 117 spelling errors in the textbooks of the SEP, but indifferent to those they commit daily.”

The sudden attention got Paulina thinking. In Mexico, as elsewhere, Twitter is a big way that people get their news and information. She asked herself how she could use Twitter to promote proper grammar, and came up with the idea of a Twitter database where Spanish speakers could check spelling and grammar. Armed with the @117errores handle, the result was NoMás117errores, or “No more 117 errors”, a direct reference to the 117 grammar errors found in the schoolbooks.

The grammar bug got Paulina in high school. That was also the year she was diagnosed with a cancerous tumor in her right knee. When Paulina started her chemotherapy in May 1997, she was having a hard time thinking of the future at all. Paulina thought it was bad enough that she might lose her hair, but soon, there was talk of amputating leg… talk that became a fearful reality after she woke up from her final leg surgery on September 29th, 1997 to just one foot and the indescribable experience of phantom limb pain.

“More painful than all of the surgeries was trying to stand again for the first time,” Paulina remembers. With the help of a few dedicated teachers, Paulina stayed on top of her schoolwork. Her parents, meanwhile, were an incredible support system. “You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Paulina Chavira in Japan while working for Marlo and his team.

“You are more than just your leg,” they repeated, a constant refrain. “You are an entire human being.”

Over the next few years, Paulina ran the gamut of fears regarding her transition. “How will people look at me? Will I ever get married and have kids? Will I ever dance again?” Making matters worse was her prosthetic leg, a model unchanged since World War II.

When she went to college, she chose journalism as a major, and it was there that her love of writing and grammar became a passion. “Writing was a way I found to pour out all the pain and anger I had after my leg was amputated,” she remembers.

While studying at Tecnológico de Monterrey, Paulina’s antediluvian prosthetic was still causing her problems doing simple things like walking long distances and wearing her normal clothes.

Her father heard about a prosthetic engineer, Marlo Ortiz, over the radio. A man who was revolutionizing the anatomical socket, the interface where the residual limb goes into the prosthetic. The Marlo Anatomical Socket (MAS), was developed with the engineer mindset to provide more skeletal support and be aesthetically more human-like in the gluteal region. Paulina worked closely with his team, testing the new technology, and eventually getting her own advanced prosthetic.

“There was life before Marlo, and life after Marlo,” says Paulina. Not only did he supply her with an advanced prosthetic, but he taught her to use it for the first time. It renewed her confidence. “For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t,” she remembers.

This confidence encouraged her to study abroad in Spain, there she finally felt like she really accepted her metamorphosis. “Up until that point, I had never really faced that I had lost a leg.” But abroad, it was was impossible to skirt around the issue. Her new friends asked about it, and as they asked about her missing leg, Paulina stopped being ashamed.

“For the first time I thought, maybe I should try this, while before, I automatically thought: No, I can’t.”

She returned from Spain with newfound independence, and she was asked to join Marlo and his team as a full-time Media Coordinator and Patient Model. Full of unique opportunities, she put her journalism career on hold and she traveled to the Czech Republic, South Africa, Japan and more: visiting the factories where they made the prosthetics, using her journalistic skills to do public relations and talk about her experience. While the experience was extraordinary, after more than a year she felt like she was living inside of her experience losing her leg, and felt like it was time to move forward and reconnect with journalism.

Paulina also found love, something she had previously feared when she first lost her leg.

Paulina and her husband Hector dancing at their wedding.

She married Hector, in November of 2006, and they “danced all night.” As for their two young boys, she tries to make the prosthetic leg as normal as possible. “I think the more normal we can be about it the better.” Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”.

Once her son Mateo even asked, “does everyone’s mom have a prosthetic?”

Her influence on Twitter landed her an editorial position with The New York Times en Español and her career goals have grown. She now hopes to finish a Spanish style-guide for news.

Over the years, and despite the trauma experienced during her formative years, Paulina followed her love of language, starting with writing, finding the accessible opportunity of editing in journalism, and ultimately as a grammar force in her editorial position and on Twitter.

Her ultimate pet peeve on Twitter is “when people say ‘it’s not well written but you understand me.’ And I can’t understand why they don’t see the importance that it’s written correctly.” Paulina believes in the power of language and grammar. She says: “I love my language, I love to write it correctly. It’s a weapon. A peaceful weapon.”

The Good Fight

The Healing Power Of Music Medicine

When being sick in the hospital is getting kids down, this charity saves the day by kicking up the jams.

One of the most potent measures of healing doesn’t come from a person’s lab results, but from their level of happiness. Recognizing that treatment comes in many forms, there is a Portland, Oregon-based nonprofit that strives for just that: helping young hospital patients find joy in every challenging moment through the serendipity of live music.

After feeling helpless watching her daughter battle cancer, Regina Ellis wanted to create something she felt would be meaningful to her and her family. She founded the Children’s Cancer Association with which she launched a program called MyMusicRx. which brings well-known artists and top-quality, professional instruments into hospital rooms of critically-ill kids for what she calls “music medicine.” The organization believes that the power of bedside music can have a transformative effect not just on patients and their families, but on caregivers and artists as well.

Folks connected to Ellis on the phone to talk about the power of music in the face of illness, and surviving hardship with love.

Regina Ellis of the Children’s Cancer Association and MyMusixRx.org.

I’m excited to talk to you about MyMusicRx because I’ve admired what you have accomplished with this project. I would love to hear more of its backstory.

As you may know, the Children’s Cancer Association is the only organization of our kind in the nation working to position joy as a best practice in children’s hospitals.

The project started because of a very personal experience battling cancer with my eldest daughter, Alexandra. During that time, I was inspired by the way Alexandra oriented her head and heart towards life. Even though she had a very aggressive disease and spent half of her life in hospital, she really welcomed each day looking for joy in the corners of the hospital room experience, all amidst hardships such as high dose chemotherapy and other surgical procedures. She could always find what was beautiful in that moment.

After Alexandra died in 1995, we brought friends and family around our kitchen table to create an organization that helps kids reduce the stress and anxiety of pain through the power of joy. We were very thoughtful about creating something new in the world: we’re not a chapter organization or a franchise of a national model. We’re a local organization that has spread out across the nation based on need.

I understand that the MyMusicRx program serves the families who are in the hospital, as well as their children. Is your goal to speak directly to the experience of the entire family?

That is correct. We know from experience that being face-to-face with illness impacts the entire family. The whole family is gathered around the hospital room: not just the mom or dad, but the siblings as well. So our goal is that our programs help support and strengthen families, addressing the stress and anxiety not only of the child, but of the individuals around the child.

What was your experience when Alexandra was first diagnosed? How did it impact your family?

Obviously, it had a big impact. This was around 25 years ago, so I was in my late twenties, with two little children and my husband, Cliff. Luckily, we were very lucky to have a big Italian family around us, but cancer was still this unexpected guest in the middle of it. We were very fortunate to have lots of people around us, but it was also a difficult journey. We spent half of every month in the hospital, and the other half recovering and trying to live as much as possible.

Alex created a “To Live” list and wrote down over 30 things that she wanted to do. Things like “make a tie-dye t-shirt” or “bring snickerdoodles to the neighbors” or “have a fun pizza party.” We made a point of checking them all off, even though we were in the hospital.

Some of those simple things were really beautiful. The last thing on Alex’s list was: “Have a root beer float in one of those huge icy mugs.” She did that the day before she died.

So that was the mission, I think, we were given. To figure out a way to live alongside of cancer that gave us hope and allowed us to be a family. And after Alex died, to think about bringing that healing power of joy to other seriously ill kids around the country and the world. Because kids need more than medicine.

24 years ago, you need to remember there was no platform for music in hospitals. You might have some carolers during the holidays, or a special show when an artist came to the community, but otherwise there was nothing. We pioneered what that looked like.

In addition to holding bedside concerts, MyMusicRx brings instruments to patients.

Were you already thinking about MyMusicRx when you were in the hospital with Alexandra, or is this something that came later?

We saw the power of music in our own family over many years at the hospital. People brought their guitars and harmonicas and violins and voices, and we would gather around the hospital bed, playing, almost like you’re sitting around a campfire. The doctors, nurses, even other families would come in and join that. The power to transform these moments from ones about disease into ones about being human beings through the power of music was profound.

I’ve had similar experiences with my travels through healing and hospitals. I think the music idea is so powerful because it doesn’t take a lot to come into a room with an instrument and play for someone who is not feeling very well.

Twenty-some years ago, people told us: “This will never work. Are you kidding? We’re in a hospital here. Instruments aren’t going to help. There’s no way.” But little by little, we began to demonstrate that our program worked to reduce pain and stress.

Music is simple. We thought in terms of what a child or family needed. “Hey, this kid has a respiratory issue so we’re going to bring in an instrument that helps them with their breathing.” or “Hey, this kid needs to move their arm after surgery to strengthen their arm.”

MyMusicRx is the only program that extends a digital musical program that brings the bedside experience online, 24/7. It’s now available to about 7,500 kids and over 25 pediatric hospitals across the country. If kids want music at 2:00AM, we bring it to them then.

Was music a big part of your life before MyMusicRx?

I was certainly a fan. I wouldn’t call myself a musician but I’m just pretty damn good with a tambourine. *laughs* But I had the privilege of having incredible musicians provide the soundtrack to my life, so when the time came, it was easy to see the power that music could provide to deliver healing to kids in a different way.

We believe that the best things are the simplest things. Whether it is five or thirty minutes a day, we believe these small musical interactions are just critical for kids who are facing life-threatening or terminal illnesses.

That’s awesome. So how can people get involved? How can they help?

 Whether you’re a band member, a volunteer, or a patient, the best way to connect with us is to go to mymusicrx.org. If there’s something in your community, we can connect you, and if not, we’ll help you start one. Just reach out! We’ll help in any way we can to share music and joy to people in need.

Q&As

The In-Between Days Of Having Cancer

In her powerful graphic memoir, comic artist Teva Harrison shines light on "the bogeyman that is my cancer."

When Canadian artist Teva Harrison was preparing to undergo stereotactic radiation—a medical procedure that requires the patient to be vacuum-sealed into a mould that feels like a bean bag chair—she couldn’t stop laughing. “I felt wrapped up like a tray of supermarket sushi,” Harrison writes in her graphic memoir, In-Between Days, which chronicles her life after being diagnosed with incurable metastatic breast cancer at age 37. In a black-and-white comic, a smiling cartoon Harrison lies shrink-wrapped on a hospital bed and asks her technician: “Would you mind taking my picture in here so I can show my husband how weird this process is? Please?”

This sense of humor and eye for the absurd is woven throughout the devastating personal essays and minimalist pen-and-ink comics that make up In-Between Days. That doesn’t mean the book is Pollyanna-ish—Harrison confronts head-on the heartbreak, terror, and physical agony her cancer wreaks—but that these pages contain equal parts hope and dread. “I am chock full of hope, mostly because I need it to get through every single day,” Harrison writes. The “Acts of Hope” illustrated in one comic include “wearing seatbelts in cabs; buying recycled toilet paper; 7-step skincare regimen—because who does these things if they don’t believe in the future?” Perhaps the bravest act of hope Harrison performs is that of drawing and writing about her illness, which presumes the possibility of finding meaning and connection in the midst of suffering.

Teva Harrison. Photo by David P. Leonard.

“When I was first diagnosed, I didn’t want to talk to anybody,” Harrison writes in the book’s preface. “I have since learned that it is the unspoken that is most frightening. Shining a light on my experience takes some of the power away from the bogeyman that is my cancer. I am taking my power back.” This means Harrison is unflinching in her illustrations of cancer’s grisly realities—from opiate-induced emotional numbness and vomiting to the foggy memory and vaginismus that follows surgical menopause—but also that she refuses to let pain block out light. She offers snapshots of her sustaining marriage and friendships; reflections on her family history and Jewish heritage; and childhood memories of snowball fights and summers spent floating with her sisters in “the mermaid pool,” a super-sized metal horse trough with a dedicated hose.

Shining a light on my experience takes some of the power away from the bogeyman that is my cancer.

In a society that often dehumanizes and shuts out the seriously ill—as Harrison puts it, “When we get sick, we disappear”—this portrait of living in the “in-between spaces” offers the antidote of empathy. We spoke to Harrison about the making of In-Between Days, the downsides of prevention messaging, and how to sustain hope and humor even when “wrapped up like a tray of supermarket sushi.”

“Living with this disease has changed the way I look at people around me,” you write. “I wonder what pain they bear silently.” How has your experience of compassion—your understanding of other people’s pain and suffering—changed since your diagnosis?

I don’t look like a person who has terminal cancer. I move through the world as a regular person—and yet I have all this pain and challenges I have to work through, from getting out of bed to getting where I need to be. It changed how I look at people — if strangers are cranky, pushing you on the subway, struggling to get a seat, I try to think about what might be behind that, what’s difficult in that person’s life, what’s making it harder for them to get through the world.

While you acknowledge the unrelenting pain and depression that comes with living with cancer, there’s more hope than despair in the pages of In-Between Days. Where do you find your wellspring of hope?

Pain Management.

An element of it is how I’ve always seen the world. I’ve always erred on the side of optimism and beauty and appreciation and gratitude. But I have to have hope. I think it’s the only way you can live with this sort of disease and go on living, doing the things you love. A lot of my hope comes from the firm community I have. I’m really lucky in that regard. I have good family and good friends. That goes a long way because it means I have support—it’s easier to feel hopeful when you have support.

I get hope from watching the news and seeing how many new treatments are being developed all the time. I get hope from reading stories of exceptional responders—people who have lived a really long time with this disease. Because it is possible. Maybe I will get to have a normal lifespan. I’ll get to see change that is meaningful. So long as it’s possible, there’s hope there.

How did writing In-Between Days change your understanding of yourself, your own illness, and illness in general?

Before my diagnosis, I was director of marketing for the Nature Conservancy of Canada. My job had become very much entwined with my identity. I lost that when I got sick and had to stop working. There was this chunk of me that was missing. I didn’t have the ease of identity that you have when you have the knowledge that you’re contributing to society. Writing this book helped me work out what my place is now, how I fit in as a person living with illness, and how I can still contribute to the cultural conversation. The act of writing it helped me work out in real time how I feel about what I’m going through and how to communicate it. Writing and drawing about it caused me to think about being sick or having an incurable illness in an analytical way.

“I know my cancer is genetic, but I can’t help but blame myself sometimes,” you write. “I wonder what awful thing I did to deserve to get cancer. I run through all the bad things I’ve ever done.” You’re an atheist, but still occasionally entertain the notion of illness as some sort of divine punishment for personal moral failings—a common impulse for anyone looking for an answer to the question “why me.” Why do you think you sometimes go down the road of blaming yourself or looking for things you’ve done to “deserve to get cancer?”

Cancer gratitudes.

We live in a society with so much messaging about prevention. With all that prevention messaging, where we were told ‘if you do this and this and this, you’ll be okay,’ it feels like if you do all these things and you’re still not okay, it must be your fault. That messaging is really deeply embedded in our culture. It comes, in some cases from the medical community, and also from other people. It’s a hard one to get around. Many of us feel this way. I’ve been told by many medical profs that this disease was coming for me, that it’s hereditary—but I still think, “well, I was on the pill for a few years, what about this and that,” things I did, be they moral or physical. I feel awful for people who don’t have that reassurance. I don’t know how to reconcile these feelings.

Then there’s the hyper-personal element—I’m Jewish and we have a special kind of guilt. My husband was raised Catholic and I was raised Jewish—the two primary guilty religions. He once said that Catholics feel guilty for what they’ve done, Jews for what they haven’t done.

“Friends stop themselves from sharing their problems, mumbling, ‘I mean, I have no right to bother you with my little problems. You have cancer,’” you write. “And in that moment, they’ve simultaneously raised me up and shut me out.” People often get uncomfortable and withdraw when a friend of theirs is ill. What are the most helpful things friends have said or done for you during illness?

Invisibilities.

Every cancer patient appreciates different things. For me, a big part has been offering something concrete. If someone asks, “What can I do to help?” I rarely have something at the tip of my tongue. But if someone says, “Can I bring you soup?” or “Do you need rides? I’m available x and y day”—that’s helpful. Sometimes my brain is really cloudy and I’m not able to come up with something – I appreciate people just being regular friends and telling me what’s going on in their lives, even if it feels like complaining.

But it’s really just showing up. There’s gonna be a misstep on one side or the other on any relationship. It’s more acutely felt with cancer or any serious illness. We always have to negotiate. Language is imperfect. Communication is this iterative process—we’re able to get there if we both try.  

How has this illness affected your friendships?  

With metastatic breast cancer, friendships are sometimes really brief and really bright. Because survival is so short, everyone I’ve met with this disease is trying to pack as much as they can in. We’re all living hard and bright. And that’s a special thing to experience with someone.

Which artists and writers most influence your work?

Helen Frankenthaler is my favorite painter. I particularly like her works picturing big objects pressing against tiny little narrow spaces. Writers, I love Lydia Millett and Lydia Davis—my two Lydias. Art Spiegelman. I love Maira Kalman—her book My Favorite Things.

You manage to hold onto your sense of humor during treatment — “I couldn’t stop laughing,” you write. “Having been wrapped up like a tray of sushi, I asked the technician to go into my purse, take out my phone, and take a picture so I could show my husband.” How do you make yourself laugh in the midst of cancer treatment?

Cover art to In-Between Days.

I feel like who we are when we’re well is who we are when we’re sick. If we have a tendency to laugh about things when we’re well, I think we’re still laughing when we’re sick. If we tend to take things very seriously, we do that when sick. Humor is partly a coping mechanism, a way of getting through it. Part of it is also the fact that this was all new to me, since I had no real experience with the medical industry. I was discovering things like a little kid— “This is so cool! This is amazing!” They can’t stop laughing. To a degree, I’m like that. It keeps me from going in a dark direction. I have the capacity for both, and finding the humor in something helps me to not just see how dismal it can be.

You can buy a copy of In-Between Days on Amazon here.

The Good Fight

Fighting Cancer In A Country Without A Word For It

Philippa Kibugu-Decuir aims to prevent breast cancer deaths in East Africa using a survivor’s most powerful weapon: knowledge.

Teaching is, and always has been, Philippa Kibugu-Decuir’s calling: from the time she was a little girl giving lessons to her playmates, to her combined 28 years teaching English and Special Education in Houston, TX.

It’s fitting, then, that the motto that steers the efforts of the nonprofit organization she founded, Breast Cancer Initiative East Africa (BCIEA), is “Knowledge Is Power.”

“Knowledge liberates people from ignorance, poverty, and disease,” Kibugu-Decuir says. “Learning is a privilege in Africa, the only way out of poverty. Teachers are highly respected.”

Operating in both the U.S. and Rwanda, BCIEA’s mission is to improve and save the lives of low-income women in East Africa by providing access to information about breast cancer prevention, detection, diagnosis, and treatment. By conducting awareness campaigns and training local breast cancer survivors and volunteers to educate their neighbors, BCIEA combats misinformation and increases breast cancer awareness one person at a time, one village at a time.

Philippa Kigubu-Decuir, founder of the Breast Cancer Initiative East Africa,

Kibugu-Decuir has strong personal ties to central East Africa. Born in Rwanda, she was raised and educated in Uganda. Her two children were born in Kenya. Much of her extended family lives in Tanzania. Such close-knit ties to such a vast region have influenced Kibugu-Decuir’s approach.

“Initially I wanted to start very small,” she says, “but things changed when I realized that the magnitude of my message could not be limited. I could not deny any of them a chance to hear life-saving messages about reducing their risk of breast cancer.”

Kibugu-Decuir launched BCIEA in 2008 using Rwanda as an incubator to develop her strategy and programs, with plans to replicate her successes in neighboring countries.

Even with a focus on a single country, however, disseminating accurate breast cancer information in the region has proven a steep uphill battle.

A Foe Without A Name

Since the 1980s, breast cancer awareness as a health and social advocacy movement has become such an ingrained part of the collective American mindset that a basic understanding of and about breast cancer is almost assumed as a given. The absence of breast cancer knowledge that preceded this decades’ old push in the U.S., however, still exists in much of East African culture.

Thus, when we talk about the need for breast cancer awareness in East Africa, Kibugu-Decuir says, we’re talking about a medical and social issue steeped in “ignorance, misinformation, myths, silence, and stigma.”

We’re talking about a medical and social issue steeped in ignorance, misinformation, myths, silence, and stigma.

In Rwanda, for example which she says is indicative of the larger East African region breast cancer was initially viewed as a disease exclusive to rich white people. Lumps and breast anomalies in black women were rather viewed as a curse, deserving of fear, shame, guilt, and ostracization.

Women who’ve had breasts removed through mastectomy (the standard treatment in Rwanda) may be considered insufficient, incomplete, or “damaged goods.” Kibugu-Decuir points to a regional curse indicative of the social and cultural stigma associated with breast cancer: “May you have your mother’s breasts cut off.”

The problem is often compounded by a belief that talking about a subject can bring it upon oneself. Rwandan women have told Kibugu-Decuir, “You can’t talk about [breast cancer]. If you talk about it, it’s going to be contagious. People will shun you.”

In fact, Kibugu-Decuir notes, Rwanda’s national language, Kinyarwanda, has no word for cancer.

These issues of avoidance and misinformation, coupled with widespread poverty, illiteracy, and severely limited or no access to screening and cancer care services like mammography, radiation, and chemotherapy, contribute to incorrect and delayed diagnoses. Many women in Rwanda and East Africa don’t know they have breast cancer until the disease has reached an advanced stage.

Rwanda’s national language, Kinyarwanda, has no word for cancer.

With early detection and treatment, however, many of these deaths might be prevented. “We are working hard to convince Rwandans and East Africans that breast cancer is not a death sentence, does not discriminate, knows no boundaries, and that men, too, can have it,” Kibugu-Decuir says.

So how do you get people talking about an issue just the mention of which may be considered fatal?

The first step, she says, is to earn people’s trust. In this, Kibugu-Decuir has a special advantage. Not only does she speak the language and have ties to the region: she also has strong personal ties to the breast cancer experience herself.

Kibugu-Decuir’s history with breast cancer, however, doesn’t actually begin with her own diagnosis. It begins with that of her eldest sister, Mabel.

In East Africa, breast cancer is often viewed as either a curse, or an affliction that only effects white women. Neither is true.

A Difference in Diagnoses

Mabel was rarely sick, Kibugu-Decuir says, and, like her contemporaries, knew little about breast cancer. Unfortunately neither did her doctors.

When Mabel fell ill in the mid-1980s, there were no cancer care services or support groups in the Democratic Republic of the Congo’s capital city of Lubumbashi where she lived. There were no early detection screenings. There were, in fact, no oncologists. To the medical establishment at the time, Mabel’s illness was a mystery.

By the time she was airlifted to London for surgery, the cancer had already spread to her liver. Mabel died of metastatic breast cancer in 1986.

“It’s been 31 years since Mabel died, yet it’s like yesterday,” Kibugu-Decuir says. “Her death left us with an incredible, gnawing pain. It would end up being the catalyst for starting BCIEA.”

Philippa knitting.

Mabel’s experience is typical of many East African patients still. By comparison, Kibugu-Decuir says, her own diagnosis and treatment in the U.S. eight years later “was a breeze.”

“Unlike my sister, by the time I got my diagnosis in 1994, I had excellent health insurance,” she says. “I was an informed patient. My cancer was detected early. I had an excellent team of doctors and a strong support system that included my family, church, and members of a breast cancer support group.”

Kibugu-Decuir underwent a double mastectomy with reconstruction and chemotherapy. For all the resulting side effects including pain, hair loss, nausea, and despair she recognized the advantages of her situation. Unlike her sister, Kibugu-Decuir had options. She had hope.

The dichotomy between her experience and her sister’s left Kibugu-Decuir with two nagging questions. Would Mabel still be alive if she had lived in the U.S.? Should where someone lives determine if they live or die?

Spreading the Word

Disturbed by these questions, Kibugu-Decuir determined to do something to disentangle cancer survival from the sheer luck of geography. To raise money for a fact-finding mission to Rwanda in 2007, she sold off some of her clothes at a silent auction held in her living room.

Despite a population of more than 10 million at the time, Rwanda had zero oncologists, or any form of cancer screening, treatment, or palliative care, Kibugu-Decuir says. Of 10 doctors she surveyed on her fact-finding trip, only two had ever even heard of breast cancer. She also met a group of 27 women whose “mind-boggling” cancer experiences encapsulated the need for action.

Each of the women had had at least one breast removed by the equivalent of a family doctor or general practitioner. None had received pain medication or post-surgery follow-up care. One woman’s doctor had removed the wrong breast, but she was unwilling to undergo a second surgery, preferring the inevitability of death with one breast intact.

Kibugu-Decuir describes these women as desolate, frail, and frightened. They held no hope for survival. Rather, they told her, “We’re just waiting to see who will go first.”

If women couldn’t access the information needed to keep them alive, then the information needed to go to them.

Kibugu-Decuir’s instincts as an educator kicked in. If women couldn’t access the information needed to keep them alive, then the information needed to go to them. Kibugu-Decuir and therefore BCIEA had to take the message to the people.

Kibugu-Decuir trained the 27 women to become BCIEA’s first village ambassadors, carrying up-to-date breast cancer information and their experiences to their communities through civic events, church and professional groups, youth programs, and one-on-one’s. By sharing information through already trusted members of these communities, BCIEA facilitates conversation, spreading awareness and helping combat misperceptions that would otherwise silence discussions before they’d ever begun.

“When you are willing to give a bit of yourself, people listen,” Kibugu-Decuir says, “so I talk about myself and my sister. [Mabel] represents them, and they empathize with me, and I can gain their trust. I use the same method to train breast cancer survivors. Once they’re out of the closet, they become our ambassadors among their own people.”

Rwanda has made notable strides in cancer care in recent years. The country now has two oncologists and has opened its first national referral facility in northern Rwanda.

Once [breast cancer survivors are] out of the closet, they become our ambassadors…

But with so little access and information still available to most of the population and the ability to go abroad for treatment restricted to those who can afford it, combating breast cancer for much of the country’s poor rural and urban women is left to the women themselves.

“BCIEA’s goal is to place the Rwandan woman at the steering wheel as the key agent of change,” Kibugu-Decuir says. In the absence of mammography, for example, women are trained how to conduct breast self-exams, empowering them with preventative knowledge for themselves and future generations.

By 2016, 24 of the original 27 village ambassadors had died. But thanks in large part to their efforts, nearly 9000 people had been reached with potentially life-saving information.

Kigubu-Decuir’s work advocating for breast cancer victims has gained her friends around the world.

BCIEA has 17 ambassadors currently active, and Kibugu-Decuir has begun to expand the organization’s reach by way of an app that provides basic breast cancer detection and treatment information.

She is also working to raise enough money to provide one smartphone loaded with the app to each of 250 Rwandan villages. She estimates 250 ambassadors each equipped with a smartphone have the potential to reach up to 200,000 people.

“If I can get support for [the One Smartphone Per Village program], we can exponentially cover the whole country with awareness,” Kibugu-Decuir says. The program also lays the groundwork for expansion into Uganda, Kenya, and Tanzania.

Successes Big and Small

While BCIEA’s primary focus is to increase survival through early detection, the organization also works to support women during and after diagnosis. In this way, Kibugu-Decuir’s education efforts turn from the preventative to the practical.

This past October, for example, Kibugu-Decuir worked with Barbara Demorest (whom Folks featured last summer) to bring Demorest and volunteers from Demorest’s organization, Knitted Knockers, to Rwanda to teach 30 local women how to knit yarn-based breast prosthetics.

As part of the trip, “[Kibugu-Decuir] organized events, connected with key hospital personnel, met with [Rwanda’s] Minister of Health, and worked tirelessly to accomplish her mission,” Demorest says. “Philippa’s heart and focused purpose of spreading breast cancer awareness to the women of East Africa is so inspiring and contagious. The country is fortunate to have such a great advocate for their women.”

Although Kibugu-Decuir emphasizes that she’s “a teacher, not a politician,” BCIEA collaborates closely on activities and events with Rwanda’s Ministry of Health and Non-Communicable Diseases Department. She has also met with Parliamentarians and Rwanda’s First Lady.

Members of Breast Cancer Initiative East Africa and Knitted Knockers have teamed up to make knit prosthetics for women who have had mastectomies.

Kibugu-Decuir would love to live to see a cure for breast cancer and hopes to see the government expand its infrastructure further to help turn more diagnoses in Rwanda into survival stories like her own. She was declared cancer-free five years after her diagnosis and has since celebrated what she calls her 22nd “survisary.”

But she recognizes that success can also result by simply shining a light on the problem. As an example, she cites a crying woman who ran up to her last year, telling her, “You saved my life.”

“I said, ‘No, I didn’t,’” Kibugu-Decuir relates. “‘Actually, yes, you did,’ she said.”

In 2008, the crying woman had been diagnosed with breast cancer but had been denied a visa to go abroad for surgery: the government refused to grant medical visas to anyone who could be treated inside Rwanda. Barred from leaving the country, the woman resigned herself to die.

Then she came across an article Kibugu-Decuir had written that same year, urging Rwanda’s government to establish a policy to address the country’s need for cancer care services and clearly articulating the absence of available treatment options.

That article became the key the woman needed to open the door to treatment. The woman returned to the embassy with Kibugu-Decuir’s article in-hand, Kibugu-Decuir says, “and they gave her a visa.”

“Even if I don’t do any more, I’ve touched one life,” she says. “My sister is smiling up there, wherever she is. That’s the kind of little thing that makes what you do worthwhile.”

The Good Fight

For The Chronically Ill, A Ringing Canyon Of Light

Something powerful happens when, from out of the abyss of the Internet, a voice like your own echoes back to you: “You are not alone.”

In the days following her husband’s cancer diagnosis, Renata Louwers went online in search of help. As far as responses to cancer go, this one was fairly banal. She didn’t go into denial, or try to escape, buying a zoo or a one-way ticket to the Great Pyramids. She double-clicked the browser icon on her laptop and typed “metastatic bladder cancer” into the winking search bar.  

Where she ended up was Inspire, a social health network with moderated discussion forums that teams up with organizations like the Bladder Cancer Advocacy Network to provide patients support for whatever condition they’re facing. With over one million members posting about conditions ranging from psoriasis to ALS, Inspire may just be the Internet’s largest health support network.

Renata’s Story

At first, Renata was intimidated by the openness of the community she had discovered. To people who didn’t grow up on the Internet, like Renata, members of close-knit digital communities can seem remarkably cavalier about sharing the most intimate details of their lives… and there’s nothing more intimate than cancer. “People seemed to overshare. It was off-putting at first,” she remembers.

Told he had as little as six months left to live, Renata’s husband, Ahmad, favored his privacy and chose to remain offline altogether as he dealt with his new diagnosis. But as Renata put her career as an auditor for the city of San Jose on hold to care for her husband, she found herself increasingly isolated by her husband’s diagnosis. She explains to me over the phone, “You can talk to your friends and family, and of course they’re supportive, but nobody really understands it.”

Renata and her husband Ahmad

Renata returned for help. In the subsequent days, she joined Inspire’s bladder cancer support network. Her reason for signing up was straightforward. “The more desperate you are, the more you’re in need, the less you care [about oversharing]. I just wanted help.”

Motivated by the powerlessness she felt trying to grapple with the reality of Ahmad’s diagnosis, she decided to make her first post.  “The first thing that brought me online was trying to figure out where we were on the spectrum. Was this really bad? Do lots of people get this diagnosis? I just had no idea. That was my first post ever.”

The Best Kind Of Echo Chamber

Renata didn’t know what to expect, but what followed surprised her. It’s something she describes as the “echo chamber” of social media, but she means that positively. In the worst echo chambers, you’re alone, and your voice bounces back at you, mocking your solitude. But at Inspire, Renata’s lonely message multiplied itself until it became a song of dozens of people, all of whom knew exactly what she was going through. Unlike the black caves of depression and solitude many people find themselves trapped in after unexpected illness strikes, there’s nothing dark about Inspire’s echo chamber. It’s a ringing canyon of light.  

Within days, Inspire’s “echo chamber” returned more than twenty responses to Renata, ranging from notes of sympathy to practical suggestions from people that had endured a similar diagnosis. 

With over one million users, Inspire’s forums provide comfort and hope to anyone.

For those whose experience of the Internet is limited to witnessing guerilla warfare in the comments of their Facebook feed, Renata’s description of a forum where people treat each other with understanding and respect seems like a polite fiction. But civility and compassion exists on the Internet–especially when the content of conversations shifts to vulnerable people making quiet requests for help.

Civility and compassion exists on the Internet… especially when the content of conversations shifts to vulnerable people making quiet requests for help.

And, as Renata learned, Inspire is one place you can find it.

“Inspire became my main source of support,” she says. “I could post something at 9:00AM with a great deal of nuance about this iteration of bladder cancer and in twenty-four hours I could have thirty replies… What I found to be incredibly helpful was hearing from other patients and families about simply navigating the landscape of this particular illness.”

Brian Loew, CEO of Inspire, founded the forum ten years ago to help patients get information about clinical trials.

Renata’s experience is what Inspire’s CEO Brian Loew had in mind when he launched the site about ten years ago.

“In the past, the voices of people with chronic conditions were ignored. People suffered in silence. Because these illnesses are not always visible to others, they are thought of as less serious or less impactful. Much of our work at Inspire has focused on making sure that this conversation can happen.”

At the very heart of this work stands a group of veritable strangers with the courage to stare at a flickering screen and admit that they’re not sure what to do next. Humility replaces pretense as users connect with others whose lives, like Renata’s, have been “upended.”

Mike’s Story

Mike Lawing, another Inspire user, tells a different story. It’s one that he sums up with a single statistic. “About 70 percent of counties in the United States don’t have an oncologist,” Mike says  with a rich drawl that tells of a life spent in the hills of western North Carolina.

At the time of his kidney cancer diagnosis in 1997, Mike was among them. He vividly recalls the experience of his doctor kneeling beside him in a crowded emergency waiting room to tell him: “Things look bad. Very bad.” Without an oncologist locally to advise him, though, Mike didn’t know exactly how bad was bad… and the Internet, still in its infancy, wasn’t much help.

When Mike Lawing was diagnosed with cancer in 1997, he was only given 5 years to live.

When Mike reflects on the earliest moments of his diagnosis, he exudes a kind of seriousness that demands that his listeners abstract themselves from the familiarity of their daily life, joining Mike in his. He tells me: “When I was first diagnosed, there was nothing out there that I knew of that I could turn to for help. I’m now on the board of directors at the Kidney Cancer Association and it was in existence back then, but as someone living in rural America with limited access to computers, I couldn’t find any of it.”

It’s easy to miss the gravity of this statement, “There was nothing out there that I knew of.” For someone recently informed that he had less than five years to live, coupling uncertainty with this lack of information seems a unique cruelty.

Patients receive their treatment and medication, but they leave wondering what was said and what it meant. Ultimately, they go on Inspire to get those questions answered.

Two decades later, Mike has outlived his initial five-year diagnosis, but has never forgotten the uncertainty of his earliest days living with cancer. That’s why Mike calls Inspire a “lifeline.”

Even for those living within close proximity to medical resources, Mike explains that Inspire offers users a critical sense of comfort and affirmation they often miss from their doctors. “You’ve got people that live in [communities] where a major hospital is located a block away, but they don’t feel comfortable going there to ask questions. The doctors don’t have time. The nurses don’t have time. Patients receive their treatment and medication, but they leave wondering what was said and what it meant. Ultimately, they go on Inspire to get those questions answered.”

The Purpose Of Providing Hope

Critics of online communities like Inspire wonder about the cost of sacrificing direct human interaction in favor of anonymous messaging. Do forums actually make people more isolated and shut off from the real world? But Mike scoffs at such criticisms, countering with a story about a man he knew who, dying, denied treatment in hospice. At the request of the man’s mother, Mike spoke with him and learned that a fear of abandoning his wife, daughters, and grandchildren was devastating him. “He was more concerned about that than his own health issues,” Mike says.

Yet the crux of this story lies in the simple fact that this conversation ever happened… and the only reason it happened was because Mike connected with this man’s mother. This is a type of connection that Inspire specializes in.

“Most people don’t have anyone to talk to, “ Mike says. “They may have family, but there is an isolation that comes with this journey. These people are terrified, but they can have that conversation online because they trust these people that are going through the same thing.”

When Renata’s husband passed in April of 2014, eleven months after his diagnosis, she returned to Inspire for hope and continued friendship. Meanwhile, with his cancer in remission, Mike still moderates the site’s kidney cancer forum. After reminding me that he was only given five years to live, Mike reasons: “I figured out a long time ago that anything that’s going on in my life can probably be used to help people around me. In fact, maybe that’s the reason I’m still around. It’s my purpose.”

This is also why Inspire is still growing, ten years after it was founded. It provides common purpose to over a million people like Mike and Renata: to give community, comfort, and hope to those who are struggling to understand the unexpected turn their lives have taken through illness. It’s a simple gesture, yet something powerful happens when, from out of the abyss of the Internet, a voice like your own echoes back to you: “You are not alone.”

Creative Commons photo of Bryce Canyon taken by Al King.

 

Essays

How Do You Talk To Your Kids When You Have Cancer?

My diagnosis is teaching me about fatherhood, and how to prepare my kids for the day when I'm not around anymore

Weeks before my son was born, I had my first seizure.

It exploded in epic grand mal fashion, turning the evening sky into the brightest rainbow I had ever seen. For a minute or two, the corner of Austin’s 3rd and Congress turned into a dance of brilliant color.

When I opened my eyes, less than a second later, I was strapped to a gurney, covered with blood.

The author and his son, Soren.

This traumatic turn of events was what led to me being diagnosed with oligoastrocytoma, a type of terminal brain cancer. But before I could even think about what this meant for me, I needed to think about what it meant for my pregnant wife–then in her third trimester– and the child that was soon to come.

I didn’t have long to think about it, though. Six weeks later, and only hours after my second brain surgery, my son Soren was born. The surgeons had only just finished closing the hole in my head with 140 staples, having just extracted the last visible traces of my tumor.

Ever since that moment, almost four years ago, I’ve been two things: a cancer survivor, and a father. I’m technically living on borrowed time, but my wife, Erin, and I do our best to keep moving forward. After Soren, we added a brand new set of twins to our already cacophonous lives, and I joined the ranks of stay-at-home dad to give myself more time to heal.

Each day brings new challenges — not as traumatic as chemo and radiation, but interesting in their own way, because beginning a family while dealing with cancer isn’t something most people have to go through.

Beginning a family while dealing with cancer isn’t something most people have to go through.

The moment my son was born, I was catapulted into the always moving, always changing world of fatherhood. Having a new child would have been difficult enough to manage in simpler “normal” circumstances, but adding the layer of this major health challenge caused the experience to go screaming past the sound barrier.

Before I had it, cancer was always a strange, black magic sort of topic to me. Until it was in my life, it was as mysterious as the stars in the sky. But every time I heard the pulsing of an MRI, smelled a radiation machine burn my skin, or felt the spark of an oncoming seizure, I had to learn a little more about how to speak about cancer–not just with adults, but to my children.

Soren at his first baseball game.

Soren and the twins aren’t quite old enough yet to fully understand the significance of my illness. They will someday soon, though. The other day, my one-year-old, Mira, looked me in the eyes and said “Hi!” I was delighted to hear her first word, but in the back of my head, I asked myself: how long until she’s asking me about my sickness?

At night, I think about what I will tell them when they start to ask about my cancer. Or maybe they never will, and it’ll always be just a normal part of their life. “My dad has brain cancer,” they’ll say to their schoolmates, as if-you-please as if I were a postman or fire fighter.

There’s a darker possibility, too. Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Will they be saying “my dad had brain cancer, but he’s not here anymore?” These are the thoughts that keep me up at night.

Right now, I’m just trying to share my love for them as openly and honestly as possible. I also want to show them that their dad isn’t afraid, even though there are private moments when I am, and think desperately about how much I want to live through this. 

And more than ever, I do want to live through this. The mere fact that I’m still alive–let alone feeling healthy now–amazes me. Yet I hold on to the deepest knowledge that, short of a major new medical advance, I am going to die of my disease someday. And yes, I am afraid of that, not just for myself, but for what this terminal diagnosis means to me and my wife and children.  

Mark, Soren, and the twins on a day out.

I work hard on my fear, and try to keep my voice level so that my wife and kids can’t hear it. Yes, my wife and I are scared shitless at times. But I don’t want my kids to sense that fear. Instead, I want them to understand: to be able to talk to them about what is going on inside of my body without focusing on the fear. 

So I talk to them about my cancer in a roundabout way. I try to teach all my kids as much about science and medicine as they are capable of understanding. New medical breakthroughs are happening all the time that could potentially cure me, so to my oldest, I’ll talk about neuroscience, so those breakthroughs will one day be grounded in something he understands, whether I’m here to talk to him about them anymore or not.  (Yes, you can talk about neuroscience with a toddler!) 

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through…

Whether I’m cured, or whether I eventually succumb, I want my kids to truly understand what their dad went through physically as well as emotionally. That’s why I write about cancer elsewhere, and why I’m writing this. There’s no easy way to talk to your kids about having terminal cancer. But while I’m still here, I’ll do it as best I can: with integrity, and without fear.

Because even if I die, I want my kids to one day know that because of them, I won my battle with cancer. Their presence in this universe would have been impossible without me; to have survived long enough to help give them life has already made my life valuable. This strange experience of having a body, a somewhat mis-calibrated one, a mis-created one, was a part of their life story. And  because of that, to understand themselves, they’ll need to understand cancer too.

 

Profiles

No Shame In Her Scars

After three bouts of cancer, Koco Powell lives her life as an "open book" to help raise awareness in others.

On the morning of my telephone interview, Coqueace “Koco” Powell, couldn’t rev up enough energy to engage in a conversation about her five-year journey with breast cancer. She’d been up all night wrestling in discomfort at her Rockwall, Texas home. In addition to insomnia, she is riddled with the pain of neuropathy in her limbs, a side effect of cancer drugs.  Getting out of bed is draining.

“Let me get a lil’ more sleep and then we can chat, OK?” she said in a text.

About four hours later, we reconnect, but she’s still not feeling well. She can’t focus, so she asks for more time.

“I’m not myself, right now,” she says with a raspy voice.

A few more hours later, she is back to doing what she does best: speaking openly about the trials and triumphs of going through a vigorous cancer treatment regimen.

“I’m an open book,” she says.

kocopic

Koko Powell.

She shares every detail about her journey via social media and to whomever wants to listen. She talks about, and even shows photos, of her disfigured chest and burned skin—a permanent remnant of cancer.

Her chest has been a battlefield. She refers to the scars there as “tracks of war.”

Cancer first invaded her left breast in 2011 when she was 36. She had a double mastectomy, doctors removed 19 lymph nodes, and reconstruction implants were placed.

Thousands of followers on Facebook prompted her to inspire them to take charge of their health before problems get out of hand. When doctors discovered her cancer, it was at stage 3.  

She garnered the following after advocating for early detection Susan G. Komen ads and as a panelist at various breast cancer awareness conferences. Komen is a global organization charged with advocating breast health and screenings, community outreach, cancer research, and bringing financial support to women with breast cancer.

Powell glows and professes to continue beating cancer, all while wearing a bright smile, flawless makeup, her signature big ribbon-shaped earrings and a nearly bald head.

The former makeup artist and TV personality doesn’t wear makeup everyday, but when she’s feeling well, she likes to glam up and snap a selfie. Other times, she posts professional photos, most of which display a breast cancer awareness theme.

She also offers up inspiration to her audience to get a mammogram and not take their health for granted. Powell is loving and kind in her approach—never bitter. She’s joyous and thankful when she announces she’s in remission.

But she admits there have been times when she wanted to give up.

Last year, the cancer returned for the second time. It was at stage 4.

“I flipped out with this one, ” she says. “I don’t know if my body got mad at me or what, but I had a recurrence. I had tumors removed, the implants removed, and more lymph nodes removed. So that’s two different chemo ports, two different types of chemo meds, two different times.”

She’s in remission again, but said she understands the survival rate at this stage is much lower. The chances of recurrence is likely.

Powell first found a lump at 36 during a self exam.  

pinksurviving

Kicking ass and taking names.

“I kind of freaked out by the lump,” she recalls in a testimonial. I don’t have any money. I don’t have insurance. I don’t know what to do.”

But a doctor referred her to a resource that would ensure she received care through a Komen grant– a program that funds low income and uninsured women’s diagnostic testing and treatment.  

This began a long arduous journey that rocked her both physically and emotionally. She started a very aggressive chemotherapy regimen. In addition to the surgeries to remove her breasts and lymph nodes, she’s also had a complete hysterectomy–a result of the cancer drug Tamoxifen, which aggravated past gynecological issues.

This surgery was another blow to Powell, who is not married and has no children. While she regrets nothing, she admits she wishes she had the opportunity to have a family.

Powell takes eight pills a day and will undergo chemotherapy indefinitely. It’s a daily routine for 14 days, and then she gets a break for seven days. The cycle repeats.

Her treatments has riddled her hands with neuropathy. She keeps paper cups and plates to avoid breaking dishes, since she drops them because she loses a grip. She avoids driving, because her feet also are affected. The pain and swelling of neuropathy make her size 11 shoes too tight.

Her energy level is low and she experiences nausea and insomnia. Putting sentences together or holding a conversation without pauses is commonplace.

“It’s different everyday,” she says. “It just depends if I’m on chemo that week. I don’t like laying around, but sometimes I just can’t get up. I push myself to do it as much as possibly can. Believe me, I do.”

Powell, who used to live in a gym, is up to about 230 pounds, thanks to being sedentary and on steroids. She’s developed high blood pressure–a condition she’d never had to deal with before. For accountability, said she’ll  talk about this struggle on social media to push her into becoming a fitness enthusiast again.

In the meantime, she’s unemployed and was declined for disability payments, so she relies on the help of family and generous friends. Powell, a military veteran and self-described strong woman, still exudes confidence through the pain. She focuses on her survival daily, not getting distracted by petty things she feels do not matter.  

chains

No shame in these stars.

Powell doesn’t go on speaking engagements as often these days. Her treatments usually keep her from being as active, but she continues to update followers on Facebook, usually with updates about her condition and reminders to take charge of their health. She speaks about her religious faith often, which she attributes to her survival.

She gets feedback, prayers, and notes about how she helped followers take control of their health. When women are diagnosed with breast cancer, they confide in her.

She loves playing the role of a virtual cheerleader. However, it sometimes bears a heavy weight on her shoulders.

“Now other people are basically living because I’m living,” she says. “They fight hard because I fight hard.”

She adds, “At first I didn’t think I was motivating people and I became more selfish with it. I wasn’t sharing as much. But after a while, I realized many women are going through the same thing and they need (the motivation) just as well.”

Not all of her outreach is sugar-coated or cloaked in pink rhetoric. Sometimes, she is blunt and to the point. Her goal is to get women to the doctor for annual checkups and mammograms as soon as it is recommended. She reminds them to stay in tune with their bodies. After describing the ugliness of cancer, she sometimes adds “you hear me?” or “cancer ain’t cute” to her posts.

“There are a lot of women who will buy make up, get tummy tucks, extensions and lace front (wigs), but they won’t go to the doctor,” she says. “To me that’s a little weird. You’ll spend money on that but not the doctor–so busy making sure the outside is looking good.”

Being uninsured is no excuse, she says, referring to the Komen grants, other programs, and free annual checkups.

She’s especially concerned about black women. A Centers for Disease Control and Prevention study released last month shows that the incidence rate gap between black and white women is closing. In addition, black women still have a higher breast cancer mortality rate.

coqueace

Koko Powell.

“African American women under 40 are at a high rate right now,” Powell says. “Some of them are dying because it’s (diagnosed) so late.”

Regardless of her health status, Powell wants to continue educating women. She wants them to be more open about their experiences so they may compare notes and potentially help doctors improve treatment or even find a cure.

Powell is overwhelmed by the support from her family, friends and followers. She tries to pay it forward each day. She feels blessed to be a vessel of hope, love and kindness.  

“Everyday is not perfect but I have to keep thinking about my purpose,” she says. “God put me on this Earth to give to people, period.”

Profiles

Pinball Wizard

After losing his arm to a post-cancer infection, Todd Brammer had to rethink how he plays pinball.

Spectators tend to show up when a real pinball wizard is playing, but even compared to the best, Todd Brammer sidling up to a table tends to turn heads. 

“I usually get a crowd of pinball people like, whoa, what’s this guy doing?” he chuckles.

Brammer is, in fact, an excellent pinball player, but that’s not the only thing that draws an audience when he takes the paddles. It’s how he plays.

Todd with his grandson.

Todd with his grandson.

Brammer only has one full-length arm and hand. Years back, he beat a bout of osteogenic sarcoma, a cancer that begins in the bone and often attacks the thighs, shins, and upper arms. The latter might not have been an issue–Brammer notes that the doctors put a steel rod in his arm–but it was a drug-resistant staph infection that later claimed his limb.

“[The doctors] took my arm off, and I had to figure out how to keep playing,” Brammer says matter-of-factly.

Like a lot of folks in his generation, the 55-year-old, Iowa-born Brammer grew up flipping the silver ball. “I used to play with two hands!” he enthuses of growing up in the town of Muscatine, playing pinball in bowling alleys.

After he married his high school sweetheart, Kim, the couple scraped together enough to buy their own pinball machine when they were in their twenties, a Williams-brand Road Kings. Now with two grandkids (and a third on the way), Todd is passing that same game onto them. “I figure it was my first machine, so it should be theirs, too,” he says.

Todd puts his game face one.

Todd puts his game face one.

Brammer has been playing for decades, but not everyone on the scene today has. That isn’t a comment on age; pinball has been experiencing something of a resurgence in recent years with Gen X and Millennial players forming local leagues for the first time and organizing tournaments.There has always been a small competitive pinball circuit, though even the international tournaments tend to be, in the words of The Talking Heads, “never for money, always for love.” But in the past few years, the game has drawn newcomers through a mix of anecdotal factors, including the hipster fascination with old-school and mechanical gaming, a few small-scale startup machine manufacturers, and the so-called brewcades (for example, Brooklyn’s Barcade) that have been popping up in hip urban areas, serving cold beers with a side of classic arcade fun.

All of this means that today, it’s much easier to find places to play. But playing on location—that is, finding machines to play in public, a critical rite for any pro pinballer—is very different than playing at home. Especially if you, like Brammer, need special accommodation to play. After all, most pinball machines are made for two-hands, not one. 

After Todd lost his arm, he first got back into the game by modifying the machines he already had. It wasn’t hard: he simply drilled an extra hole in the right side of the box, added another button just above the existing one. By pulling the left-button wiring through the inside of the machine body to connect with the right side of the machine, Ballmer was able to control both flipper buttons with one hand; the trickiest part, says Todd, was getting his brain wired the same way.

Todd poses in front of some of his favorite machines.

Todd poses in front of some of his favorite machines.

But on location, there’s no way to add extra buttons. So when Todd plays the pinball machines at Angelina’s Pizza in Salinas, California, he gets his wife to help. “I play right flipper,” he explains. “They cut off my left arm, so Kim plays my left.” In public, the couple often plays side by side, each controlling one flipper. (Kim, by the way, is a solid player in her own right. “She’s probably better player than I am!” Todd enthuses.)

It’s a spectacle that’s always sure to draw crowds. In addition, the unique team approach to play also caught the eye of the organizer of the local league.

Pinball league play is a way serious players can rack up official points over the course of a season and compete in competitions. The governing body that oversees competitive pinball rankings, the International Flipper Pinball Association (IFPA), keeps track of points earned from both league and one-off tournament participation. Higher rankings can mean the difference between making higher-level competitions on both the national and international level, though those types of tourneys are often populated only by the top several dozen players. That said, the IFPA ranks tens of thousands of players, including amateurs who show up for even one IFPA-approved tournament.

A close-up view of the custom-made gizmo that allows Todd to play unmodified pinball machines with just one arm.

A close-up view of the custom-made gizmo that allows Todd to play unmodified pinball machines with just one arm.

Not that any of this really bothers Todd. Brammer isn’t concerned about points or ranking, figuring he and Kim will split the points for their combined game. “I just like playing,” he maintains. “Most of the people [who I meet in league play] aren’t real hardcore, and we haven’t run across anyone with any problems yet.” He lists off half a dozen of his league buddies. “They’re into getting points, but I just go to play a little pinball, drink a little beer and hang with some good people.” That’s because so-called “pinbrawlers” tend to be known for their inclusivity and friendliness.

Which is how Brammer ended up with what might be the most interesting one-off pinball gizmo ever designed, built by a fellow league member to aid his on-location play.

The gizmo, built by console hacker and geek-maker-of-all-trades Ben Heck, is as simple as it is perfect. Two panels fit over each set of flippers, attached to the glass on top of the pinball machine with two large suction cups. A wire crosses the front, connecting the current from the right flipper to the left, and allowing Todd to play both flippers with the fingers one hand. It works well. Brammer has only made one modification: he has altered Heck’s original design to add larger suction cups, because Todd likes to play rough.

Todd’s gizmo has made it easier for him than ever to play pinball at his favorite joints.. “It doesn’t fit on older games, like certain machines made before the mid-70s,” Brammer says. “But I can put it on 80 percent of games out there, so now I can just go play at Free Gold Watch [in San Francisco] or the Pacific Pinball Museum [in Alameda, California].”

Todd plays his custom-modified Ghostbusters machine.

Todd plays Ghostbusters, one of his favorite machines

After years of playing pinball at home, Todd finds hitting the road with his gadget and playing on-location freeing. But Brammer still collects machines, and mods them so he can use them at home. He now has four machines: Williams Bram Stoker’s Dracula, a Stern Buck Hunter, his old Williams Road Kings, and a brand new Stern Ghostbusters.

“It might be the only Ghostbusters on the West Coast with one-handed play setup,” he says with a laugh. Then he adds, still chuckling: “I mean, if I’m gonna spend $5,000 on it, I might as well be able to play it.”

All photos by Gene X. Hwang / Orange Photography.

Essays

What Hollywood Gets Wrong About Having Cancer

In movies, cancer is an extraordinary condition that enables extraordinary events. But in real-life, cancer is not extraordinary. It's part of life.

While I sat in the theater waiting for Guardians of the Galaxy to start, I knew I had cancer.

Officially, I was waiting for the diagnosis from the biopsy, which would be along about a week later. I still had a shred of hope the doctor might say, “It’s just a virus, take these pills.” He had done everything he could to disabuse me of that hope, but doctors aren’t infallible. So what if he said he had never seen these symptoms when it wasn’t cancer?

While clutching that shred of hope, I mostly wondered what kind of cancer I might have. How serious would it be? What stage would it be? Would it kill me? Would I be dead in a year? In months? In weeks? Would Guardians of the Galaxy on its opening weekend be one of the last movies I would ever see?

Having been diagnosed with cancer, Bryan Cranston can now start a meth lab.

Having been diagnosed with cancer, Bryan Cranston can now start a meth lab.

When you do a keyword search for “cancer” on the Internet Movie Database, you get 1500 entries. Breaking Bad is at the top of the list. Bryan Cranston’s cancer gives him license to “break bad”. He starts a meth lab to support his family. The series creator, Vince Gilligan, summarizes Breaking Bad as a story about a mild-mannered teacher who becomes the equivalent of Scarface.

Because cancer. Cancer lets you become an over-the-top Al Pacino character.

For a lot of movies, that’s the takeaway. Well, you’re screwed, so now you have license to do something extraordinary. What do you have to lose?

Cancer finds a place in the dizzying sprawl of The Fountain.

Cancer finds a place in the dizzying sprawl of The Fountain.

Ryan Reynolds signs up for a secret super-soldier experiment in Deadpool. Kevin Costner takes an assassination contract against his better judgment in 3 Days to Kill. Clint Eastwood transcends his racism in an act of self-sacrifice in Gran Torino. Mickey Rourke comes clean about his career as a hitman in Ashby. Jack Nicholson and Morgan Freeman go to the North Pole, climb the Pyramids, and ride motorcyles in Bucket List. Betty Davis tries to carpe diem with Humphrey Bogart in Dark Victory. Gene Hackman, who lies about having cancer, uses it as an excuse to reconcile with his family in The Royal Tenenbaums. In The Omen, we find out why a satanist priest had a change of heart and died trying to stop the Antichrist. “He was riddled with cancer,” explains David Warner. Cancer is an extraordinary condition that enables extraordinary events.

My carpe diem was pretty laidback. Not the stuff of movies.

But in real-life, cancer is not extraordinary. Two out of every five people in the US will be diagnosed with cancer. It will kill one of them. When I was diagnosed, I didn’t do anything particularly extraordinary. I pondered my mortality and hunkered down to endure the ordeal of my treatment. No secret supersoldier programs, no assassination contracts, no bucket lists, no long overdue reconciliations, no changes of heart about the Antichrist. My carpe diem was pretty laidback. Not the stuff of movies.

Creed's creed: "You fight, I'll fight."

Creed’s creed: “You fight, I’ll fight.”

In these movies, cancer is just why a character does the stuff that makes the movie happen. Cancer as catalyst. They’re mostly contingent on cancer being terminal. It’s the equivalent of a cough in a period piece. In a story set in Victorian England, when someone coughs, she’ll be dead from consumption before it’s all over. For me, movies stand out when cancer isn’t terminal. In Creed, Sylvester Stallone’s Rocky is diagnosed with cancer. He wants to give up. But his young protege, who’s training for a difficult fight, won’t have it. “If I fight, you fight,” Michael B. Jordan insists. Stallone agrees with a fist bump. Cue the montage comparing chemotherapy to training for a brutally difficult boxing match. Creed isn’t about winning. It’s about prevailing.

But most of these movies aren’t actually about cancer. When you think of movies actually about cancer, you think of 50/50, The Fault in Our Stars, Dying Young, Brian’s Song, stuff like that. There are hundreds of these movies, most of which I’ve never heard of and many of which I didn’t even know had cancer in them. Movies like Terms of Endearment, where cancer shows up to play everyone out with a heartfelt message. Tumor ex machina. That’s ultimately about cancer, right?

Love Story, which came out in 1970, didn’t even admit it was about cancer until the 1978 sequel confirmed that, yep, Ali McGraw’s unspecified terminal illness was leukemia. I remembered in Beaches that either Barbara Hershey or Bette Midler dies from cancer. So when I sat down to watch it again (this article was painstakingly researched), I was mortified to discover I had misremembered. Barbara Hershey dies from heart disease.

Oops, Beaches is about heart disease, not cancer. But does it even matter?

Oops, Beaches is about heart disease, not cancer. But does it even matter?

Does it matter? Cancer is a convenient villain in a story about loss, but it’s not the only villain. Announcing a death in advance is dramatic, whether it’s cancer or heart disease. You can only get so much mileage out of a car wreck. Knock, knock, your husband/wife/child has just died in a car wreck. Griefgriefgrief. The griefgriefgrief is more interesting when the bereaved and the bereavee have some time to grapple with it, in the same way that a ticking time bomb is more dramatically interesting than an explosion. That’s where cancer comes in. It announces itself so we can grapple with it.

Movies supposedly about cancer are actually about mortality. They almost always come down to “well, I’m going to die.”

So it seems to me these movies supposedly about cancer are actually about mortality. They almost always come down to “well, I’m going to die.” Unlike cancer specifically, this is something five out of every five people will experience.

To be fair, some movies about cancer stand out for their specificity.

Although Me and Earl and the Dying Girl is a bit cloying, it toys skillfully with the uncertainty that affects cancer patients. 50/50 has a lot of information about the mechanics of treatment. In The Fault in Our Stars, I was taken aback at the brief appearance of the mesh mask that holds a head-and-neck cancer patient still for radiation treatment. Those masks look scary, like Medieval torture devices. They don’t read well in movies. Movie language for cancer is usually just a shaved head, an IV drip, or one of those donut-shaped radiation machines. The first time I saw one of those masks was when mine was made. And there it was for a brief glimpse in The Fault in Our Stars. Two years ago, I probably wouldn’t have even noticed it.

A Fault in Our Stars offers a glimpse of something you don't normally see.

A Fault in Our Stars offers a glimpse of something you don’t normally see.

As someone who’s holding steady to find out which of the two in five people diagnosed with cancer I’m going to be, my reaction to movies about cancer has changed. They don’t scare or intrigue or even affect me the way they did before my diagnosis. They’re telling me things I know already. They’re dramatically repurposing something personal to me, in a way to try to make people understand. But I already understand, thanks. I’m no longer the target audience. In fact, I’m not even the subject matter, because cancer is just one of many things that has happened to me.

The movies where cancer is meaningful to me are the movies where it happens in the midst of everything else. Where it has a role in the story, but it’s not the actual story, and not just a catalyst to make the main character do something movie-worthy. Creed, for example. Magnolia. The Grey. A Serious Man. The dizzying sprawl of The Fountain. Cancer in those movies does two things. It takes me out of the movie. “Rats,” I think, “I have cancer.” Then it takes me deeper into the movie. Because cancer isn’t the sum of the experience, and it’s not even a turning point. It’s an important detail.

The movies where cancer is meaningful to me are the movies where it happens in the midst of everything else.

Not knowing what's going to happen in Me and Earl and the Dying Girl.

Not knowing what’s going to happen in Me and Earl and the Dying Girl.

If you’ll bear with me, let me tell you my favorite example of cancer in a movie. It’s an odd choice.

It’s a movie I saw while recovering from my treatment, waiting for six months to elapse. At six months, I was scheduled for a full set of MRI and CAT scans to determine whether the chemo and radiation was effective. If everything was still clean at that point, I’d crossed an important hurdle to being one of the two in five people diagnosed who survives. I had come a long way, and now I was holding a different sized shred of hope. And there I was watching a silly horror movie.

I watch a lot of them. I’ve been fascinated by horror movies since I was too young to watch horror movies. 90% of them are dreadful. It’s all about that quest for the other 10%. Among that 10% is a zombie movie called Wyrmwood: Road of the Dead. The main characters are in a car that’s run out of fuel. A horde of snarling ravenous zombies surround the car. They can’t drive away. They can’t get out. They’re trapped. No one is coming to rescue them.

“Is this the worst fucking nightmare of your life or what?” asks one of the characters.

“No fucking way, mate,” says another. It’s an Australian movie.

“What the fuck could be worser than this?”

 

The zombie apocalypse in Wyrmwood: "This is fucking nothing."

The zombie apocalypse in Wyrmwood: “This is fucking nothing.”

He pauses. He takes a drink from a bottle of whiskey while the zombies snarl and peer into the car’s windows. “About fifteen years ago,” he says, “the doctor told me my son had brain cancer. He was only seven years old. He died in my arms. That was way worse than this. This is fucking nothing.”

Where did that come from? Why did this gleefully gory, energetic horror movie want to tell me that about this character? Why did it want to minimize its zombie apocalypse? Why did it want to include underneath its silly horror a reminder about the real enormity of cancer? It’s not that guys like me might only live to fifty instead of eighty. The enormity of cancer is that it happens to children.

So six months before seeing Wyrmwood, there I am in the theatre with some close friends, including a ten-year-old boy who means a lot to me. The swollen lump in my throat might still be a virus, but I’m struggling to accept that clearly it’s not.

Taken out of Guardians of the Galaxy, and then taken deeper.

Taken out of Guardians of the Galaxy, and then taken deeper.

Guardians of the Galaxy starts. A little boy sits forlorn in a hospital hallway. He goes in to see his mother. She is bald and gaunt. An IV drip hangs by her bed. An EKG chirps. Movie language for cancer. She says a tearful farewell to her son and then dies. He is devastated. It takes me out of the movie.

“Rats,” I think, “I probably have cancer.”

Then it takes me deeper into the movie. The little boy is kidnapped by a UFO and he grows up and finds a magic rock and a talking raccoon and a cool green chick.

Cancer is part of many stories, but it’s never the sum total of any story.

In the support group I was part of before the treatment made it too difficult for me to talk, there was a young Hispanic guy with tattoos, a shaved head, and leukemia. He talked about his family. About his three children. He didn’t know if he was going to live. He didn’t know how to prepare his youngest boy. Coming out of the support group and seeing those three kids climb into their father’s arms was almost more than I could take. A staggering concurrence of joy and sorrow.

I think of those kids when I watch Guardians of the Galaxy, a movie I adore. That opening moment takes me out of the movie. Then it takes me deeper into the movie, because Guardians of the Galaxy isn’t about cancer. It’s about many things and that’s one of them. An important thing, to be sure, but not the only thing and not even the main thing. It develops characters instead of defines them. Cancer is a part of many stories, but it’s never the sum total of any story. My life and its stories are about many things. Cancer happens to be one of them.

The Good Fight

The Young Invisibles Of Cancer

"In most people's minds, cancer isn't a college student," says Matthew Zachary of Stupid Cancer. "It's a bald kid, or a 65-year-old woman..."

Ask any random twenty-something if they want to have kids someday, and you’ll get a host of answers. “Maybe.” “Definitely not.” “If I meet the right partner.” “Yes, absolutely!” “I don’t know.” Which is, if you think about it, the great thing about being in your twenties. You can answer whatever you want to the question, because you still have time. You can always change your mind.

Unless you get cancer. Then the decision might just be taken away from you.

The lack of awareness about fertility and cancer treatments is something that gets under the skin of Matthew Zachary, founder of Stupid Cancer, the country’s largest nonprofit dedicated to providing support, awareness, and advocacy for young adults with cancer. The father of two twin six-year olds whom, but for chance, he might never have been able to have, fertility is a particularly important subject.

“Fertility should be the cornerstone of young adult cancer,” Zachary tells me by phone, with the thick Brooklyn accent of a born-and-raised New Yorker. “Cancer sucks enough to deal with as a young person without it taking away our ability to be moms or dads one day. But most young adults diagnosed with cancer are never told their treatments can make them sterile.”

Outside of running Stupid Cancer, Matthew Zachary is a trained concert pianist who has released two albums.

Outside of running Stupid Cancer, Matthew Zachary is a trained concert pianist who has released two albums.

Zachary knows what he’s talking about. In 1995, while studying film at the University of Southern California, Zachary’s grad school career was derailed by brain cancer, when he was just 21. And that wasn’t the only thing cancer derailed. A classically-trained concert pianist, one of Zachary’s earliest symptoms was the loss of mobility in his left hand, rendering him incapable of doing one of the things he loved most at a time when he was already sick. “It took a while for the doctors to find anything,” Zachary admits ,“but I can’t fault them. How many kids who are pianists exhibit early brain tumor symptoms?”

Eventually, Zachary was diagnosed, and began a regimen of surgeries and radiation, which eventually saw him go into remission and allowed him to play piano again. But during this period, Zachary learned first hand that young adults are one of the most invisible subgroups of cancer patients. “In most people’s minds, cancer isn’t a college student, or a teenager, or a thirty-something,” Zachary points out. “It’s a bald kid, or a 65-year-old woman running a relay for breast cancer.” The issue is that young adults in the prime of their life are somehow viewed as immortal, or at the very least, tougher and more capable of standing up to the hardships of cancer than other groups.

In most people’s minds, cancer isn’t a college student, or a teenager, or a thirty-something…

But Zachary cautions this isn’t necessarily so. First of all, there’s the logistics of dealing with cancer as a young adult. “Statistically, most young adults are underinsured, which can be in many ways worse than being uninsured when you’re dealing with cancer,” Zachary says. “If you’re underinsured, you’re stuck with your employer’s provider when you have cancer, and they can more easily deny you coverage. There are people who quit their jobs when they get cancer, just so they can go on Medicaid.” No wonder, then, that about two-thirds of all bankruptcies are medical, and about two-thirds of those are for people under 44.

Past the merely logistical issues with getting cancer at a young age, though, come the psychological. Because let’s face it. As young adults, the best of us are, as Zachary succinctly puts it, “hot messes” trying to figure out who we are, and how to make our way in the world. Now add the psychic baggage of cancer to the mix. “Take all the stuff that’s really hard to do in your twenties and then multiply it by thousands,” Zachary says. “Take dating. You’re dying, you’re bald, you’re sick all the time, and in my case, I was impotent. Who wants to date the cancer guy?”

Zachary’s been married for 13 years, so someone obviously did want to date the cancer guy. But the fears, the loneliness, and the invisibility he felt as a young man with brain cancer dealing with these issues are the ones which eventually led Zachary to found Stupid Cancer, in order to be able to provide resources and solidarity to more people going through what he did. What started as a grassroots club for young people with cancer has now, twenty years later, evolved into an international community. “You don’t have to be a young adult to support Stupid Cancer. You can be a boomer, a teenager, a middle-aged American, whatever. It’s a community for everyone, just viewed through this lens, which is eventually relatable to everyone, about what it’s like to be in your twenties and thirties.”

Matthew Zachary speaking at Cancer Con.

Matthew Zachary speaking at Cancer Con.

Ultimately, though, it all comes back to fertility. As his kids, home from school, rough-housed in the background, Zachary repeatedly told me on the phone that if there’s anything the cancer community needs to do better, it’s make sure that young cancer patients have a reproductive future.

“Most people diagnosed with cancer in their fertile years are simply not told their treatments can make them sterile, or impede their ability to become a mom or dad one day,” Zachary says bluntly. “There are women who have stage 4 cancer whose doctors never tell them about fertility preservation, who end up living, and never being able to have kids, because their doctors made that decision for them.”

That’s why Stupid Cancer advocates for legislation where caregivers will be legally responsible to ensure fertility preservation–including banking sperm, freezing eggs, and harvesting embryos–for cancer patients. After all, fertility preservation is the only reason Zachary has his two beautiful daughters today… but it also put an enormous financial hardship on his family.

Most people diagnosed with cancer in their fertile years are simply not told their treatments can make them sterile…

“I was lucky enough to have a doctor who did make me aware of what could happen to my fertility, and bank my sperm,” he says. “But it cost me $5,000 up front and $2,500 a year until my wife and I decided to have kids. Then it cost us significantly more for in vitro fertilization. So here me and my wife are, staring down a home equity loan to be a Mom and Dad. I love my kids–they’re healthy and beautiful and we got lucky–but is it okay that we had to effectively buy our children because cancer took them away from me? That insurance doesn’t cover this is a burden on the economy.”

Among other things, Stupid Cancer exists to help try to ameliorate some of that hardship for other would-be moms or dads with cancer. To give them the right to change their mind about if they want to have kids down the road. And, of course, to make sure that they have the resources they need to survive. Because if you get cancer in your twenties? “It’s really going to suck,” Zachary says. “But we can help it suck less.”

You can find out more information about Stupid Cancer here.