The Singer With Honeycomb Bones

Ailsa Lipscombe has the words Per Aspera Ad Astra tattooed across her forearm. It’s Latin for “through hardship to the stars,” and Ailsa knows a lot about what that means.

Per Aspera Ad Astra. Photo: Stuti Sharma

Now 25, Ailsa has been in pain for twelve years. At age thirteen, she fell over at a bus stop and twisted her ankle. It was a bad injury, but it should have healed quickly. But the pain spread. Her leg became swollen, purple, and freezing cold.

It was ten months of agony before she was diagnosed with Complex Regional Pain Syndrome, a disorder that affects the nervous system. The symptoms vary wildly, from extreme skin hypersensitivity, muscles cramps and aches, and, in Ailsa’s case, slow loss of sight. The exact cause of CRPS is unknown, but even relatively minor trauma can trigger it, and the progression of symptoms is different for everyone.

In 2011, Ailsa wrote a letter to her twelve-year-old self. “When you’re diagnosed, it’s going to seem like the end of your life,” she wrote. “But it’s not. It’s just the beginning of a new life you didn’t imagine you’d be living.”

When you’re diagnosed, it’s going to seem like the end of your life. But it’s not. It’s just the beginning of a new life you didn’t imagine you’d be living

The next few years would be a major period of adjustment for Ailsa. At first, she was excited to have a name for what she was going through, but she soon learned that in this case, the name is not particularly helpful.

“We are taught in society to expect a very linear model of health care, where you get sick, receive a diagnosis, receive treatment, and get better,” she says. “However, with CRPS there is no standard treatment plan and when I first developed it, very few doctors had even heard about it.

“By  the time I received a diagnosis almost a year after first getting injured, my pain and symptoms had already spread through my entire leg and I was experiencing secondary complications, such as honey-comb bones (osteoporosis), muscle atrophy, and myoclonus. Since then it has further spread, affecting my whole body, vision, and digestive system.”

After her diagnosis, Ailsa began to rely on crutches, and then a wheelchair to get around. School and socializing became difficult. In 2007, she fell into a coma and almost died. In 2009, she began losing her sight.

In her letter to herself, she says; “When your CRPS starts to spread, you’re going to be scared. That’s ok. You’re allowed to be scared, and crying is not a sign of weakness. It’s a sign that you’ve been strong for too long. Just keep studying and never stop singing. Music will save your life countless times in the coming years.”

Every day, Ailsa lives with extreme widespread pain from misfiring nerve signals, muscle and joint cramp, and allodynia–a hypersensitivity where stimulation that shouldn’t hurt causes severe pain. That means small tasks can be very hard. Something as simple as taking a shower often causes her to faint from overheating; cooking a meal can exhaust her to the point of being too tired to eat ; going for a five minute walk can leave her legs feeling like they are on fire, as if she just ran a marathon. She spends a lot of her day planning her energy very carefully.

But none of this has seemed to slow her down. Ailsa, born in New Zealand, is currently living in the US after receiving a prestigious Fulbright Scholarship to study her PhD in music at the University of Chicago.

Moving across the world would be a daunting prospect to anyone, but Ailsa’s health had made her question whether she’d ever be able to live independently.

“I’m sure anybody would feel some trepidation to move such a distance,” she says. “To get into the University of Chicago – I felt both excited and quite scared.”

Connie, Ailsa’s Service Dog, would prove the vital support she needed to make the move in 2015.

“Connie is a true superstar,” says Ailsa. “She absolutely revolutionized my life.”

Ailsa Lipscombe and her service dog, Connie. Photo: Stuti Sharma

Connie, a four-and-half year old labrador-retriever, is trained primarily as a guide dog, but she helps Ailsa with many different tasks.

“Connie gives me the independence to go out alone and be able to cross roads confidently and navigate busy and new spaces. She is trained in counter-balance–helping me up stairs by grounding me so I don’t fall–and in tasks such as picking up things for me that I drop.

The only big thing that [my service dog] had to get used to was walking on the right side of the pavement, instead of the left!

“Moving with a service dog requires a lot more planning about really small things… for instance, will there be parks nearby for Connie to play in? I had to read up a lot about American service dog laws so that I could be sure I was following all the rules. Some things were made much easier by Connie’s presence, however. I’ve never felt truly alone since moving, and she’s also a great ice-breaker when meeting new people! Connie found adjusting to her new life in the U.S easy. The only big thing that she had to get used to was walking on the right side of the pavement, instead of the left! It is because of her that I felt confident to move to the other side of the world and she’s done wonders in making me feel settled and happy in Chicago.”

Ailsa’s PhD focuses on something she’s always loved: music. As well as researching it, she’s on the board for the Graduate Music Society, helps organize social events for the music department, and represents the Humanities Division on the Graduate Council. When she’s not busy at the University, she’s exploring Chicago, spending time at Lake Michigan – which reminds her of the beach at home in New Zealand – and singing, both solo and in a choir.

When Connie first came to America from New Zealand, she had to learn to walk on the other side of the sidewalk. Photo: Stuti Sharma

“When I sing, I feel free,” she says. “I feel like music allows me to move beyond my body. I am no longer constrained by my mobility or pain and can experience some of the freedom that I often feel I am denied due to my health. When I got sick, music became the bridge between my ‘old’ healthy life and my new one that was defined by chronic illness. When I sing, or play piano or saxophone, I still feel pain and discomfort, but I also feel like me. Performing has allowed me to hold onto my old life even when adjusting to my new.”

Ailsa’s love of music began early. She recalls memories of singing in the car on road trips, and dancing in the living room with her sister. She learned to play the acoustic guitar and piano at elementary school, then the harp, Cuban percussion, and saxophone, as well as singing in choirs. She started private singing lessons at age eleven.

This passion spread into her academic life. After graduating college, she went on to complete a Master’s Degree at New Zealand’s prestigious School of Music.

“A lot of my research focuses and has focused on bringing the voices of the unheard into the academy,” she says.

Her recent work has looked at the under-represented voices of indigenous groups within animated films like Disney’s Frozen.

When I sing, I feel free. I feel like music allows me to move beyond my body.

“I think it’s important because even when underrepresented groups get a chance to ‘speak’ in mainstream film or the arts, their voices are often managed and controlled by reigning systems of (white) power. So I think it’s important we understand how indigenous groups and underrepresented communities are incorporated into the media.”

She’s now exploring how patients experience sound in hospital.

“I initially planned to research how various cultures are portrayed and (mis)represented within film and television. My PhD program requires me to take two years of coursework before I begin working on my dissertation, so I’ve had time to revise this plan. My research is likely going to explore the role of sound, silence, and music in experiences of patients and practitioners within medical environments. I’m particularly interested in understanding how multi-sensory experiences of space (in person and also mediated through television and film) change perceptions of pain, anxiety, and dis/comfort.”

Her discoveries so far focus on the multifaceted meanings of sound.

Photo: Stuti Sharma

“Sound is neither good nor bad and cannot simply be muted or eliminated to improve the soundscape,” she says. “Sounds and noises function differently depending on who is listening and how they are listening.”

Pain and the perception of it is something Ailsa knows all too well. She plans her days carefully, thinking weeks ahead about what she wants to do and what is expected of her, to figure out what energy she will need and when. CRPS affects her entire body.

But Ailsa says she is who she is today because of her health journey, not in spite of it.

“My tattoo–Per Aspera Ad Astra–reminds me that I have to go through battles to reach my goals and that positive outcomes are achieved not just through hard work but also through the ability to face challenges and work through them. Whether I like it or not, my health is a part of who I am and when people say that I have achieved something “despite my health” it’s asking me to deny a part of my life that has undoubtedly motivated me onwards to fight for what I want to achieve.”

Ailsa wrote to her twelve-year old self: “Trust in God. Trust yourself and your own strength, and keep on keeping on. You’ll be ok. Trust me.”

She plans on returning to New Zealand with Connie once she completes her PhD.