Ailsa Lipscombe: Unabridged

I talked to the amazing Ailsa Lipscombe for Folks this month. I had to edit a lot of the interview down, but I think she said so much interesting stuff, so here it is in full.


See Ailsa’s story on Folks: The Singer With Honeycomb Bones.


1. It looks like you’ve been into music for a long time (reading your post “Dear 12-year-old me”). How did that get started for you?

I was lucky enough to grow up in a family who were passionate about music, both as performers and listeners. My earliest memories are of singing in the car on road trips and of dancing in the living room with my sister to LPs that my dad would play. In primary school I learned acoustic guitar and piano, but my passion was always singing. It was hard to find a teacher who would teach someone as young as me (we started looking for a teacher when I was around 7-8 years old), so I ended up learning harp, Cuban percussion, and saxophone (both alto and tenor) while also singing in choirs. When I was 11 I started private singing lessons and just haven’t stopped since. Here in Chicago I sing both solo and in a choir and I love how doing both challenges me to learn such different repertoires – and meet new friends!


2. What makes you passionate about music? It’s obviously still playing a big part in your life.

When I sing, I feel free. I can take on the persona of the song’s narrator; I can play around with personalities and characters; I can explore worlds that are physically off limits for me. Most of all, 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.

I also love listening to music, because it can simultaneously take me away from my current situation (such as distract me from pain or physiotherapy) but also help me enjoy the current moment even more (like singing with friends or relaxing after a long day studying).


3. You did your masters at the NZ School of Music – what did that focus on?

My Master’s explored the ways popular music fans understand what a singer means when they sing “I.” I was particularly interested in exploring how fans use social media to “get to know” a musician and then how this knowledge transfers over into the interpretative practices they use when listening to music: hearing references to real life events, names of people the singer has mentioned before, etc. and then interpreting these inclusions as evidence that when the musician sings “I” they mean their “true” self, rather than a performative self or narrator.

A lot of my research focuses on bringing the voices of the underheard into the academy. So in the case of my Master’s, I was interested in allowing fans to speak about their own interpretive practices, thus validating the techniques they use and their overall musical experiences. Since coming to Chicago, I’ve been doing some research on the under-represented voices of indigenous groups within animation (such as in Disney’s Frozen), and I’m also currently exploring how patients experience sound in hospital.


4. You must’ve been pretty stoked to get the Fulbright Scholarship. Was the idea of moving to Chicago daunting? You’ve been there since 2013, right? I think I read that you were going to be there for five years – is coming back to NZ on the cards?

It was very daunting to move so far away from home and family. I’m sure anybody would feel some trepidation to move such a distance, but with my health I had wondered if I would ever be able to live independently, so to get into University of Chicago I felt both excited and quite scared. I moved here in the Fall of 2015 and my degree program is between 5-7 years. Once I complete my PhD, I will need to come back to New Zealand as part of the requirements of my Fulbright scholarship, as a component of the award is about giving back to your local community having had these incredible international experiences. Long-term, however, I see myself working in the States.


5. How has your PhD gone? I read you were planning to focus on the relationship between music, culture, and film. Can you elaborate?

So far my time at University of Chicago has gone so quickly! I can’t believe it’s been almost two years already. I’m loving my time here, both academically and socially. I have gotten involved in a lot of extracurricular groups and organizing roles on campus so I stay busy but I’m meeting so many amazing people. This past academic year I’ve been on the board for the Graduate Music Society, which helps organize social events for the music department. I have also been a mentor to an incoming international graduate student through the Office of International Affairs, sung in choir, and have just been elected on the Graduate Council as one of the two Humanities Division representatives.

For my research, I initially had planned to research how various cultures are portrayed and (mis)represented within film and television. As my PhD program requires me to take 2 years of coursework before I begin working on my dissertation, it’s given me time to revise this plan and expand upon it. So at present, 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.


6. So you have Complex Regional Pain Syndrome. What does that mean for you? How does it affect your daily life? Has having it put you on a different path than you intended?

Although when I first developed CRPS it only affected my ankle, it was left undiagnosed and untreated for so many months that 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.

Every day, I live 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). Small tasks can be very hard – something as simple as taking a shower often causes me to faint from overheating and standing under the water; cooking a meal can exhaust me to the point of being too tired to eat the thing I have just made; going for a five minute walk can leave my legs feeling like they are on fire and make me feel as if I have just run for 5 miles. This means I spend a lot of my day planning my energy very carefully. I have to think a week ahead at all times, figuring out what energy I will need when and then do my best to save energy when I can so that I can go out one night with friends or sit an exam.

It’s hard to imagine what my life would be like without chronic illness. I fell ill when I was 13 so my whole teenage life and time at university has been spent with chronic pain and going in and out of the hospital regularly. So it’s hard to say what my path would have looked like had I not become ill. I can say that it has changed me as a person and changed my priorities. I am a more empathetic person because of my illness and having lost many people whom I considered good friends because of my health challenges, I value my friends and family who have stuck by my side even more now. Not to mention I am grateful to those that have met me since diagnosis and accepted me for who I am, with – and not in spite of – my health struggles.


7. I feel like CRPS is a pretty broad diagnosis and not much is understood about it. Do you think that’s true?

When I received my diagnosis of CRPS I was at first excited to have a name for what I was going through but quickly learned that in this case a 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. However, with CRPS there is no standard treatment plan and when I first developed it, very few doctors had even heard about it. Although people are getting better at recognizing it early on, it is still classified as a Rare Disease and there is no guaranteed treatment to help. Chronic pain, chronic illness, and CRPS in particular, are so misunderstood within the medical field, as well as in society at large, that it’s incredibly frustrating at times.


8. Please tell me about Connie! How does having her help you?

Connie is a true superstar. I was placed with her in 2014 and she has absolutely revolutionized my life. Connie is a labrador-retriever and was trained through Assistance Dogs New Zealand, a charitable organization that breeds and trains disability assistance dogs for a variety of disabilities. They worked with me to see what tasks I would find most helpful and then Connie was trained specifically to help me. She’s trained primarily in guide work, which gives me the independence to go out alone and be able to cross roads confidently and navigate busy and new spaces. She is also 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. 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!


9. I’m guessing that the prognosis for CRPS is pretty vague, maybe. Do you know much about what your future looks like, both immediate and a few years out?

For the most part, prognosis is vague and hugely dependent on how early you are diagnosed. Some recent research shows an early diagnosis can lead to containment of the disease and reduced symptoms. Unfortunately for me, by the time I was diagnosed, my CRPS had already begun to change my neuro-pathways and move throughout my body and when it gets to that stage, doctors change their tune and purpose from improvement to management. Here in Chicago I’ve got a great Pain Management team who are helping me manage my symptoms with a variety of treatments, including oral medication, physiotherapy, and every 3 months I go into hospital for a procedure on my spine that administers pain relief and steroids directly to some of my affected nerves. We are also talking about trialling something called the Spinal Cord Stimulator (SCS), which would hopefully offer long-term pain relief for my leg pain. In saying all of this, I have accepted that it’s likely I’ll have pain for the rest of my life (or at least for the foreseeable future), so it’s really important for me that I work on living with my illnesses, as if I wait for them to improve, I could spend the rest of my life waiting and seeing opportunities pass me by.


9. If you had to choose, what three things would you want people to know about you?

One thing I would want people to know is that a smile doesn’t mean I’m not in pain. I work really had to mask a lot of my symptoms and discomfort because I don’t want my health to dominate the relationships I have with people. But I think it’s important for people to also know that a smile doesn’t mean I’m better; it just means that I’m able to have fun while also experiencing pain.

That I am who I am today because of my health journey, not in spite of it. I have a tattoo that says “Per Aspera Ad Astra” which is Latin for “through hardship to the stars.” It 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.

Also, that I am grateful for technology and online communication and how it has helped me feel less alone since diagnosis. When I was diagnosed with CRPS, the internet allowed me to connect with others with the same disease – some of whom I have now had the absolute pleasure of meeting since moving to the U.S. Now that I live away from home, technology allows me to keep in daily contact with my family and friends back in New Zealand, which certainly makes the distance not feel as great as the 8500 miles between us.


I want to give my huge thanks to Ailsa for sharing her story with me, and for taking the time to give such thoughtful answers. It’s really humbling to be allowed into people’s lives in this way. I’m excited and interested to see what Ails does next – and I was lucky enough to make a new friend out of meeting her for Folks. 

If you or someone you know would be interested in being part of Folks, please get in touch with me.