Essays Uncategorized

How I Became A Pink Person

I never really liked the color pink. But then I was diagnosed with breast cancer, and pink became the color that connected me to fellow survivors.

The first time I saw what cancer looked like I was in a science museum with my kids. The exhibit, which focused on microbes, had floor-to-ceiling images of cancer cells and microscopes set up to take a closer look at these rogue cells. I was fascinated and horrified all at once.

This was a few months after I was declared NED, or “No Evidence of Disease,” after a three-year fight for my life. In November 2012 I was diagnosed with Stage IV inflammatory breast cancer. And standing there in the windowless space, staring at the spiky microtentacles of the cancer cell, brought me back to the moment I found out I had breast cancer.

My mind could not process this invisible thing that was ravaging my body. Hearing the doctors talk about cancer cells and tumors and the rate of growth was overwhelming. How could these cells—this cancer—be doing all this damage all while I was at the park with my kids, brushing my teeth, making dinner? Seeing a scan or reading a chart detailing my tumor’s cellular makeup didn’t make it any more real.

Becoming A Pink Person

Enter the color pink. I had never been a pink “person.” It was just another color, something I associated with candy or ballet tutus or my grandmother in Florida. But suddenly pink became something tangible, something to touch and to see when everything else in my world seemed either colorless (chemotherapy) or invisible (radiation). Pink became the color of my cancer, the color of my world.

When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it.

And it gave my family and friends and those around me something to rally around, something to say: this is what I’m fighting for.

Pink did something else. It gave me a touchstone to other patients and survivors. People don’t realize how isolating and lonely it is to be so ill, how you can be constantly surrounded by people but feel so alone. When I see a pink ribbon on a shirt, on a license plate, or on a suitcase at the airport, I can say: yes, that person has felt it. Felt it themselves, watched someone they love suffer, supported someone into survivorship, said a heart-wrenching goodbye. It’s almost a physical sign: we’re all in this together.

We don’t, by contrast, bond over cells or, worse, crazed tentacle-covered blobs.

A Color That Connects

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds. I have a collection of pink pins given to me by total strangers who support breast cancer research. One is a slim metal pin studded with deep pink rhinestones, a gift from a woman in a restaurant in California. Another is a soft, light pink fabric ribbon from a flight attendant in New York who wore it to support her colleagues. One is from a march in San Jose, an oversized neon pink metal pin that takes up an entire buttonhole on my shirt. I treasure them but also feel it’s my duty to pass them on, like a baton in a relay race. For me the color pink is a reminder that we are all fighting, recovering, persevering.

When I see pink, I always ask: are you a survivor? I feel a connection, even if it’s just for a few seconds.

Should I embrace another color now that I’m in remission? Something classically optimistic like green? Or purple, the universal color of cancer survivorship? People ask me this. But the color pink and breast cancer will always be a part of my life in some capacity. I have the BRCA gene that puts my kids at risk for cancer if they test positive for the gene. That makes me pink pretty much forever. To me it’s a reminder to be vigilant, and to never forget. Last year, 250,000 women in the U.S. were diagnosed with invasive breast cancer.  More than 40,000 women are expected to die from breast cancer this year in the U.S.

Until that number is zero I will be wearing pink, in all shades.

Q&As Uncategorized

MS Through A Photographer’s Eyes

Hannah Laycock's vivid photography shows life from the perspective of someone with multiple sclerosis.

Hannah Laycock was diagnosed with relapsing remitting multiple sclerosis in 2013. As a photographer, Laycock has started to explore what it means to live with a degenerative disease through her art. Her photo series, Awakenings, explores her journey through diagnosis to find a new normal in a changing body. contemplative and sensuous work on MS contributes to contemporary photography, and to wider illness narratives. She’s exhibited worldwide, and her latest photo series, The Vessel, was recently commissioned by Fòcas Scotland.

Contemplative and sensuous, Hannah’s work not only is making an impact in the world of contemporary photography, but in the wider narratives of illness and what it means to be normal. She’s exhibited worldwide, and her latest photo series, The Vessel, was recently commissioned by Fòcas Scotland. Folks sent Amy Mackelden, a writer living with the same condition, to talk with Hannah about how her diagnosis has changed her, how she incorporates the condition into her art, and what she hopes to accomplish next.

When were you diagnosed with relapsing remitting multiple sclerosis, and how did it change you?

I was officially diagnosed with MS in July 2013. I’d recently started to play squash again, which I hadn’t since I was about 16 years old. After the first session, I noticed a pain underneath my right shoulder blade, which progressed into numbness across my chest and down my right side. It was something I had never experienced before.

My doctor did some preliminary blood tests, but couldn’t find anything. I discussed my family medical history, my main concern being that my dad has Motor Neurone Disease (ALS). I was referred  to neurology to have an MRI scan.

I wasn’t expecting the news—that I had multiple sclerosis. Because my symptoms had faded and it was my “first” attack, they couldn’t quite make the diagnosis official until I had another relapse. In July 2013, the news was confirmed and I was then offered drug treatments. The whole experience felt like a dream; as if I was in someone else’s body.

An artistic photograh of a nude woman standing with her back to the camera with a cut down her spine.

Nervous System by Hannah Laycock.

I wasn’t expecting the news—that I had multiple sclerosis.

What was your career like before you were diagnosed?

After creating a project about my dad’s Motor Neurone Disease for my final year project at Brighton University, I felt creatively and emotionally jaded. Most of my energy went into my day job working as a Studio Manager and Production Assistant for a fast-paced creative digital agency. Although I enjoyed where I worked, it was stressful.

Why did you decide to start using your body in your photographs?

The fact that I use my own body in a lot of my work, almost like a performance piece, I don’t recall it being a conscious decision. It was more of an intuitive process. I was organically drawn to use this method as a way of translating how I felt, and still feel, living with a chronic condition.

It felt like a natural thing to do, being that I work with the experience of MS and how this affects my feelings and emotions. I feel at ease translating that through the use of my body. MS symptoms make me acutely aware of my body and what it feels, or in some cases, what I no longer feel.

It also gives me a sense of liberation, being playful with my body. Instead of MS choreographing what my body does, I work with it, rather than going against it and letting it consume me. In this way, the work makes me feel free and unrestrained.

Instead of MS choreographing what my body does, I work with it, rather than going against it and letting it consume me.

How do you come up with your ideas?

Ideas come from various sources, such as a passage from a book I’ve read, poetry, or the work of other artists. Ideas can come from something that appears quite mundane or simple. When I’m not trying to think up an idea, that can be when it strikes.

A woman standing in the forest with a cloud of smoke hanging before her face.

Brainfog by Hannah Laycock.

Your photos are often raw, exposed, and extremely intimate. Are you ever nervous about this approach?

I think with anything, it’s always healthy to feel some nerves. However, when executing raw and intimate subject matter, you need to have a healthy balance of assertion with exposing yourself in conjunction with those nerves. After all, if you are going to expose yourself, then you need to be sure of what and how you feel and why you are doing it. Otherwise, the work can come across as insincere and, perhaps, a little naive.

People do find some of the imagery quite intense, but I don’t see that as a negative. To me it means the work is translating what I had intended; it lays bare the reality of emotions people can experience with MS.

What does your MS medication mean to you? How does it affect you?

I was very much against medication for the first two and a half years after my diagnosis. I’ve never really been someone that felt the need to rely on medication.

If you are going to expose yourself, then you need to be sure of what and how you feel and why you are doing it. Otherwise, the work can come across as insincere

Prior to MS, I had been a healthy young woman from healthy stock. But before commencing treatment, I had experienced some pretty major changes in my life, such as relocating back to Scotland after living in Brighton and London (in the south of England) for 10 years. My body took the brunt of all the changes. My health deteriorated and I relapsed pretty badly. I lost the hearing in my left ear; my balance was way off. I had vertigo and had to use a walking stick and stop driving. I was majorly fatigued and felt like I was sinking fast into ill health. It was at that point that I decided medication was the only way forward to help me climb out of what felt like a bottomless pit of decent.

Two and half years later, I’m still on the same medication. An IV infusion every four weeks, which means I have to go to hospital each month. But since then, I’ve been relapse free. I still deal with daily MS symptoms, but they have become my “norm” and I am able to manage most of them. Others, I’ve had to have medical procedures to get a handle on.

In the grand scheme of things, I now live well. I have a sense of being back in control of my life. The only part I feel conflicted with is the fact that I have to go to hospital each month to have my dose of medication. This makes me feel a little locked in at times, and not as free as I would like, to just spontaneously disappear on a trip somewhere.

A woman with her face underwater in a bathtub, bleeding from her mouth into the water.

Forced to Gasp by Hannah Laycock.

Do you work in any other mediums aside from photography?

Not to the same extent as photography. Sometimes I dabble with a bit of drawing. I have also taken up embroidery for the first time this year. The plan is to incorporate that into new work that looks at the fragility of the human body from the perspective of disease. It will be quite a lengthy process; an installation piece working with textures and color. Color tends to play a big part in my work and is how I communicate what I’m experiencing.

What do you hope viewers take away from your photographs?

Curiosity to find out more about MS and other chronic conditions. A sense of confidence and empowerment within their own lives. To help others through times of adversity.

My next project, The Vessel, is about the experiences of relationships and intimacy through the lens of disease and diagnosis. I was once a person of a loved one diagnosed (when my dad found out he had Motor Neurone Disease), and then I became a person diagnosed myself (MS).

Don’t wait until you’re diagnosed with a serious illness to make you really appreciate all the things in life that bring you joy.

If you could let the world know just one thing about life with MS, what would it be?

We don’t get many chances in life, if at all. Don’t wait until you’re diagnosed with a serious illness to make you really appreciate all the things in life that bring you joy. Pay attention to the little things. Start appreciating everything now.

Hannah was interviewed by Amy Mackelden, who also has relapsing remitting multiple sclerosis. Amy is the weekend editor at Harper’s BAZAAR, and is developing a project about chronic illness called MS Is My Boyfriend.

Roundups Uncategorized

Community Roundup: What’s Your Favorite Thing About The Disability Community?

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason. This week, we asked […]

There’s this concept of ‘chosen family’ that refers to people you surround yourself with who support you. It’s a big concept in the LGBTQ community, where many people feel isolated from their biological families, but chosen family is equally important to the disabled and chronic illness communities for the same reason.

This week, we asked members of Folks’ Twitter community what their favorite thing about the chronic illness and disability community was. What many of the answers we received touched on was this concept of ‘chosen family’ and how much online communities can help support someone who is dealing with a life-changing illness or condition.

Also, this week we’re asking our followers: “What’s something you never thought you could accomplish when you were diagnosed, but which you successfully do now?” We’d love to hear your thoughts, so follow Folks on Twitter (@folksstories) and let us know! We’ll post our best answers next week.

Additional reporting by Josh Andrew.

Creative Commons photo by Lindsey Turner.

Profiles Uncategorized

This Pale African Beauty Is Challenging The Stigma Of Albinism

In Nairobi, where albinos are persecuted and even killed for witchcraft, a 19-year-old model with albinism competes to be Kenya Miss Universe.

There’s one thing 19-year-old Lucianah Nyawira can’t understand about Kenyan society: why her fellow citizens seem to prize white people, yet she is so stigmatized.

The beautiful young woman with albinism, who is an aspiring model in talks with a top model agency to head to Paris, has been subject to abuse for most of her life.

“I don’t get why Kenyans always like white people so much…[white people] are always given privileges, everyone wants to be associated with you, why don’t they want to be associated with me and I’m white too? That is the irony in all of this.”

With her unusual loveliness, Nyawira is a natural beauty contestant in Kenya.

But the university student, who is now in her third year, has some insight; after all it’s a question she’s been grappling with for two decades, starting when her father kicked her and her mother out of the house just after she was born.

“When I was born my mum was newly married and my dad was a tour guide, so most of the time he wasn’t home. I was born, I’m white and both of them are black and he doesn’t know about this albinism thing so my dad was like ‘You cheated on me with a white guy’, and he chased her away.”

They moved in her with her grandmother, in the rural county of Kirinyaga in central Kenya, where things scarcely improved.

“People were coming, older people and all, telling the family I’m a curse to the village and to the family. It was really tough but I really love my mum because she’s a strong woman, and my grandmother – they never listened to all of that.”

Nyawira applies her make-up in her dorms.

For the duration of her life, Nyawira has had to listen to myths of how people with albinism are a curse, referred to as ‘zeru zeru’ – which means ‘white ghost’ in Kiswahili. She is also often called ‘pesa’, a Kiswahili word for ‘money’, and threatened with kidnap to neighboring Tanzania. In East Africa, where albino body parts are used by witch doctors touting medicine produced from them as a tonic for good fortune, a complete set of body parts can fetch as much as $75,000, according to the International Federation of the Red Cross.

“People will always call me funny names. Some will even see you walking with your friend and they pull your friend aside.”

A few years ago, Nyawira’s friend was warned she was inviting a bad omen into her life.

“My friend took it in and we don’t talk anymore.

“I used to cry every day when I was young. Most of the mothers never wanted me to play with their kids.”

On the catwalk.

But Nyawira, who credits a supportive family including her two half-sisters and step-dad with much of her confidence, has let very little come between her and her dreams.

She fits in studying diplomatic relations at Nairobi University around modeling shoots and a social media campaign to raise awareness about what it means to have albinism – educating people on facts like how albinism is not contagious.

“I want to be a diplomat, I want to make it in my modeling life, I want to be a good mum, I want to start my clothing line. I have so much stuff to do.”

She is currently negotiating with eminent international modeling agency Elite, which has represented models like Naomi Campbell and Gisele Bundchen, to go to Paris in July. Nyawira says the ‘albinism’ label is a difficult one; she embraces her genetic condition, a mutation of several genes which causes a lack of pigmentation, but she says that is just one part of her.

“Of course I can’t run away from being defined by having albinism. You can define me as a person with albinism but don’t treat me any differently because I have albinism. Yes, I have albinism, but don’t favor me. Yes, I have albinism, but don’t discriminate against me.”

Nyawira prepares with fellow contestants of Kenya’s first albino beauty pageant.

Though she concedes it has not been easy to forge ahead in the notoriously brutal world of high fashion, where appearances triumph above all else – even before issues of culture, race and health come into play.

“Most of the times when it’s African attire, the designer is like yes Lucianah you’re good, you have a beautiful body and you can do well but this is an African outfit, people will say we are not embracing the African heritage. People will say ‘Why are you giving the white people our African clothes?’.”

Nyawira was told by judges to leave one model casting call, while another time there was a critical public response to one of her photo shoots, which now number more than 20 across five different Kenyan publications.

“People were saying: ‘Why are you dressing a white girl in African attire? That is still colonisation. I really felt bad. Sometimes I just feel like maybe I should just finish college and go out country to the US, maybe this is where I can feel comfortable. But then I’m like ‘No, this is my country’ but it’s a very big population, how do I explain to people I’m not white? How do I convince African designers I can do African whatever?”

How do I explain to people I’m not white? How do I convince African designers I can do African whatever?

Apart from the limitations she encounters from other people, however, Nyawira says she faces few others due to her condition. Like others with albinism she has to be vigilant about wearing sunscreen and her vision is poor; she wears glasses much of the time and must sit in the front of her lecture theaters. But it poses no real interference with her modeling, apart from needing the intensity of the camera flash dialed down.

And she is hopeful that things will improve for those with albinism in East Africa. Nyawira says about half the time people accept she has albinism while the rest of the time people mistake her for a ‘mzungu’, the Kiswahili word for white person – but in her childhood very little was known about her condition. Kenya now has its first high court judge with albinism and a Member of Parliament with albinism, some of the trailblazers who are putting the cause of albinism on the map. Just recently, Nyawira competed in the world’s first beauty pageant for people with albinism and finished in the top 16 finalists of the Kenya Miss Universe pageant.

There is another potential social challenge Nyawira faces. While other barriers are breaking down in Kenya, women with albinism face great difficulties getting married. However, the defiant and articulate teenager doesn’t see this as a problem right now.

Women with albinism confront significant challenges in African society.

“Basically I don’t like men. In Africa, when you get married, you’re your husband’s property. The way your husband rates his house, his car, his farm, you’re among that. You’re the one to clean, cook – the role of the woman is to give birth, wash, cook and satisfy the man. I really don’t like the African thing about marriage, that is the only part I don’t like about being African.”

Never defined by convention, Nyawira still wants her own children, and has even decided on how many: three girls and one boy.

“I want to be a mother, of course. I love kids, I can be a mother even without getting married. I want to adopt a kid with albinism.”