In her first book, Beyond the Pale, writer and folklorist Emily Urquhart tells a big story from the most intimate of places. Her daughter, Sadie, was diagnosed with albinism as a young baby, and Emily's quest to learn everything she could about this often-misunderstood genetic condition led her into the deepest nooks of fable, history and science — as well as across the world, to East Africa.

In her own words, Emily talks about how her personal story turned into an eye-opening book.

"I realized pretty quickly after giving birth to my daughter that we were in the middle of an unusual birth story. I have always written about my life as a means of processing what is happening to me, so I turned to writing and note-keeping as a way of processing what was happening. I knew it was a story I would eventually tell her, and I wanted to get the details right. So from the every beginning, I started taking notes about very intimate and both small and large details so I could eventually share them with her.

"When you have a small newborn, you don't have a lot of time to sit down and write anything, but you do have a lot of quiet spaces in your day, a lot of time where you are just holding that child and thinking. And in those spaces I would begin to think about what was happening to me and I would write down sometimes just words, sometimes sentences, about how I was feeling, about what was happening. I would record the colour of the walls in the genetics department at the hospital. And I would record at the same time the very basic details of my daughter's life, like her weight and how she was growing and the various things you notice when you have a small baby. And as those words and lists and notes turned into sentences and eventually paragraphs, I realized it was something that I wanted to communicate in a larger fashion."

"I have a background in folklore. When I had my daughter, I was right in the middle of my PhD in folklore at Memorial University. I didn't know anything about albinism before she was born, and I certainly didn't know that there were a slew of folktales, beliefs and legends that existed about albinism. People tell stories to try to explain the world around them, and in particular when there's something they don't understand or they fear, like a human difference. That's where a lot of stories are born. I expected that if I dug a little bit I might uncover some information. What I didn't expect was the volume of information that I would uncover. From the very beginning, I discovered that the alleged first story or recording of somebody having albinism was actually Noah from the Bible. It was the description of his birth that suggested to ophthalmologists only in the past century that he was born with albinism."

"When I was researching for Beyond the Pale, one of the most emotional experiences I had was during a trip to Tanzania. I was there to learn more about the human rights crimes being committed against people with albinism, particularly women and children. Essentially, they are being hunted down by henchmen who sell their body parts to witch doctors to be used in potions. I was visiting a school where there were four children with albinism, but what I wasn't expecting was that one of them had been attacked just six weeks before. This little boy, whose name was Mwigulu, couldn't look us in the eye, my husband and I. His body was shaking with fear. He was very sad and when I looked closely at him, I realized he was also missing an arm. It had been hacked off in the attack. He had not spoken since that event, so he was unable to communicate with us when we were visiting. I will never forget the way that boy looked. I've never seen a sadder person in my life, and he was only 10 years old."

"When I set out to put together Beyond the Pale, I had initially written on recipe cards. I had written notes and sentences and paragraphs on these recipe cards that I kept stashed away in the living room, the nursery, in my purse, just so I could write if anything came to me. Once my daughter got a little older and I did have time to sit down in my office and begin to write, I had all these recipe cards. I took this big stack of cards, I went down to my basement and I strung up a series of clotheslines. Each clothesline represented a chapter. And I took clothes pegs and organized my recipe cards and strung them up in a somewhat cohesive narrative using these clothes pegs to put them in a line. And by the end, I had probably 11 of these clotheslines strung up in order. After that, I started to input them into the computer. It was a low-tech but highly efficient system!"