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Essays

How Migraines Drove Me Out Of The Office, And Into My Dream Job

Self-employment was the perfect solution for my problem with chronic headaches, but it shouldn't have been my only option.

When my alarm goes off at 7:32 a.m., I slap at it while trying to dodge a blinding ray of morning sunshine.

That should get me going. Instead, I groan and try to turn away.

The light sears my sensitive eyes, and the ache in the back of my neck doesn’t so much abate as twist when I rotate my head. The inside of my skull feels raw and fuzzy like an inverted tennis ball.

My husband hears my muffled moaning in the next room and comes in to check on me. “Is it your head?” he asks, already knowing the answer and leaning down in case I’d like his help sitting up.

I do. As I sit upright for the first time, I get that initial diagnostic blood rush that helps me gauge how soon I need coffee, or ibuprofen, or something stronger to make it through the morning.

Migraines can make even the healthiest body feel aged and weak.

This particular day, the pounding subsides after about two minutes. That means it’s a good day. At this rate, I’ll be at my desk working within 30 minutes.

With my right hand on my temple to ease the throbbing, I shuffle to the bathroom and shake two pain relievers into my mouth. The tap water seems extra cold this morning as I wash down the tablets, then splash my face. I wonder if other people–people without chronic migraines–feel the same intense relief of icy water on their skin, the way it feels like it penetrates the surface, tingling with healing powers.

I head into the kitchen and hit the button on the electric teakettle to get water boiling for coffee. From there, my hand goes automatically to the refrigerator. There’s a cooling eye gel roller in the door. I smear it around my eyes and on my temples, which probably makes me look even more manic than I feel.

But mostly, I don’t feel manic. I feel tired.

Migraines can make even the healthiest body feel aged and weak.

A National Epidemic, Especially Among Women

Describing a mostly undetectable illness can also wear a person out. According to the Migraine Research Foundation, more than 38 million Americans suffer from migraine headaches. Of those, a whopping 28 million are women. It’s a fairly common condition, but talking about pain, especially invisible pain, is intrinsically linked with gender norms, no matter how enlightened you think you are. For years, I apologized for inconveniencing my friends. Even now, I’m overly grateful that my kind husband is such a supportive caretaker, simply because I’m so used to explaining away my own suffering.

I’m not alone in battling the stigma, as migraines have unusual cultural baggage. Back in 2011, then-presidential hopeful Michele Bachmann was roundly dismissed as a strong contender due to the sexist assumption she wouldn’t be able to hold higher office while suffering from debilitating headaches. Say what you will about her political positions, but women migraine sufferers are often used to defending their pain in an uncomfortably similar manner.

Talking about pain, especially invisible pain, is intrinsically linked with gender norms…

This isn’t about gendered weakness; it’s scientifically proven that women experience more pain than men.  Studies suggest that because men’s and women’s brains are different, women are more sensitive to pain, which certainly could explain why women are also the majority sufferers of conditions such as fibromyalgia and osteoarthritis, as well as migraine sufferers in far greater numbers. Women have also been shown to be more resilient when it comes to tolerating pain, though I have to wonder which came first: all this gendered pain or our ability as women to deal with it.

After nearly three decades of managing the symptoms, I can tell when a migraine is going to be easy to quash, and when I need to pop a triptan. Depending on the day and severity of my symptoms, some people might not even label my pain as a migraine; today, for example, it’s likely a run-of-the-mill headache.

But, given that I’ve had debilitating headaches since I was around 8 years old and been trying to explain them since, I don’t tend to parse the difference anymore. If I can get up and get to work, I’m grateful. That doesn’t mean I’m entirely well, or that my pain doesn’t deserve its severity label.

How Migraines Gave Me My Dream Job

For the past decade, I’ve been an independent journalist, which means I work for half a dozen publications at any given time, covering stories and topics across a range of issues. I relish the education and diversity of subject I get to cover… but I especially love that I get to set my own schedule.

That’s because, as a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me, who can experience extreme torment at the drop of a hat. When I experience an attack, I have to quickly deal with any number of symptoms, ranging from projectile vomiting to extreme sensitivity to sound and light.

As a lifelong migraine sufferer, traditional 9-to-5 employment isn’t exactly designed for people like me…

Being a freelancer is a lot like being a perpetual student. There are constant deadlines and little resembling a traditional  workday schedule. (Going out with fellow freelancers during the week is like the study group part of adulthood.) I love the unpredictability and often late hours, and I’m extremely fortunate to be so well suited to my profession. Some of the sting of freelancing is also taken out of my situation thanks to the fact that my partner’s job provides me with reliable health insurance.

I’ve always been entrepreneurial by nature. During graduate school, I had several jobs—in upscale restaurants and university offices—that helped cement my desire to figure out how to be as professionally self-sufficient as possible. In each of them, my migraines helped quickly drive me from the job.

In one administrative position, the office’s overhead fluorescent light panels often made me ill, or at least threatened to do me in. I’d be fine for weeks at a time, and then, due to some unknown trigger, the lights would do me in, and the migraine symptoms would suddenly show up. I’d have to ask to go home sick in the middle of the afternoon, helplessly trying to explain that, like Cinderella at 11:15pm, I was just 45 minutes away from a complete breakdown. “You see, I can already tell that if I don’t get to bed now, I’ll be blindly throwing up in the ladies room in less than an hour.” Talk about oversharing… but how can you discuss a sickness you can’t see if you don’t overshare?

But there are worse things than managers that don’t understand. After going home with a migraine at a high-end waitressing job, my paternalistic boss decided I didn’t need to come in the next morning.

How can you discuss a sickness you can’t see if you don’t overshare?

“You should rest,” he insisted, and took me off the schedule even though I was well enough to go in, and needed the money.

“I’ve had migraines. I know how they are,” he said as if I didn’t know the same.

It wasn’t long after that I swore I’d find ways to not be reliant on people like him, who both seemingly cared but ultimately robbed me of the one thing a job is supposed to be about: making a living.

gustavo

Photo: Gustavo Devito

 

But Self-Employment Shouldn’t Be The Only Solution

Illness and disease are often talked about in terms of cost, and I don’t just mean health insurance or prescription medication.

Recently, after spraining my foot while out reporting in the mountains, I began thinking about the personal and social costs one incurs from some sort of symptom set or constraint. I can still walk, but in a controlled ankle motion (CAM) boot, I’m forced to be steadier and slower. If I want to get around quicker, I could spend money on a taxi. Even I want to take public transit, a cheaper option, I’ll still likely force some small percentage of commuters to wait on me. My personal injury or illness may mean the bus doesn’t run on time for a large group of people.

When my migraines were more frequent and intense, it had measureable costs. There is immense privilege in being able to be self-employed, and to have access to the drugs I need. There were times when my preferred prescription, still under patent and unavailable as a generic, cost $45 a tablet without insurance. Weighing whether and when to treat symptoms is something far too many people consider every day. If my husband were ever without full-time work and health benefits, I’d have to reconsider the independent nature of my career.

As with other gendered aspects of illness, I do wonder: when getting sick at work got to be too much of a hassle, why did I solve the equation by removing myself as the variable component? I probably could have explained myself more thoroughly or found workplaces more accommodating to my condition, or to diversity and differences more generally.

For me, being self-employed is a natural fit. I’d always wanted to work from home, and I’m fortunate that enough factors in my life made that a relatively painless transition.

People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met…

But I’m not convinced that freelancing and self-employment offer the easiest career path for the majority of workers, even though traditional workplace culture has been slow to evolve to accommodate a range of limitations, visible or not. People with certain limitations who may already feel shut out of society shouldn’t be expected to self-select out of careers and corporations where their needs won’t be met, which is sort of what I did without fully questioning why.

People with health conditions and limitations are often the people who are most vulnerable, and many rely on the health insurance coverage and guaranteed salary offered by traditional full-time employment. Statistics show that the percentage of the workforce that freelances is only going to continue to grow as the post-recession economy remains sluggish and companies can save resources by outsourcing work to contractors. On one hand, that seems liberating for some people. But asking those already at risk to invite and endure further uncertainty by working on contract, or to worry about finding and affording their own health benefits, seems like a particularly volatile, unfair situation into which many may feel increasingly forced.

As much as I’m an evangelist for freelancing, I’m also an advocate for being empowered to meet your own needs. It shouldn’t be up to individuals to wage every wage battle on their own. But until there can be more open discussions about the limitations people face in the workplace and better policies to support a wider range of worker, we might have to keep oversharing with our employers, and with each other.

Profiles

Reclaiming A Disability Slur Through Dance

As part of Heidi Latsky Dance, an NYC-based troupe of dancers with and without disabilities, Jerron Herman wants to show the world there's beauty and grace in cerebral palsy.

When modern dancer Jerron Herman was sixteen, he watched the 1989 film My Left Foot, starring Daniel Day Lewis as a spastic quadriplegic Irishman who teaches himself to paint and write using his only controllable limb—his left foot. “I cried like a baby when I saw it,” Hermann told Folks. “I remember thinking, ‘This is the first example of someone with Cerebral Palsy I’ve ever seen represented in media anywhere. It was sad that it took so long to find an example I could glean from.”

Herman, who has hemiplegic Cerebral Palsy, a neurological disorder that prevents the brain from sending proper signals to the muscles, resolved to become an artist of some kind—to help combat the virtual invisibility of disabled people in the media. “I wanted to tell stories different from what you’re used to,” he says. “I was not gonna be a cliche story.”

But at 16, the creative outlets available to him seemed limited: “Performance was never expressly a viable option for me. It was kind of that invisible dialogue between society and yourself—I’d think, ‘Nah, I’ve never seen anyone like me doing X, so I wouldn’t fit into that space.’”

I was not gonna be a cliche story.

Naysaying of Herman’s abilities began when he was still an infant. When he was diagnosed at three months old, doctors offered a worst-case-scenario prognosis: “They told my parents that I wouldn’t be able to clothe myself or feed myself independently, I wouldn’t be able to walk independently, I’d have a hard time with speech, there would be cognitive delay—basically, that I would need assistance with everything,” Herman says.

If you’d told those doctors that, at 26, Herman would be doing arabesques and jetes across the stage of Lincoln Center in New York City as a full-time member of the Heidi Latsky Dance Company, they might have laughed.

Growing up in Alameda, in the San Francisco Bay Area, Herman found that, though Cerebral Palsy limited mobility on the left side of his body and made him prone to spasm, he was capable of much more than his doctors had expected. “I was primed to subvert the prognosis, because it had such an overwhelming, overarching rejection of my abilities, that I thought somewhere it had to be wrong—in at least one of these don’ts, there had to be a do,” he says.

Photo by Amro Arida.

His parents encouraged this mentality. “They didn’t allow me to internalize the diagnosis,” Herman says. “They didn’t allow me to exaggerate how it affected me beyond reality.” When he was in preschool, they transferred him from a special education program to a mainstream public school. When it came to things like chores, they expected as much from him as from his able-bodied older brother, now an artist and an actor.

You need to keep control of your spasm. You’re called to the same amount of self-management as anyone else is, so start now.

“They instilled a sense of agency in me,” Herman says. He remembers shopping at Pier 1 with his dad as a kid, navigating aisles of expensive glassware: “My dad said quite bluntly, ‘I’m not paying for you to break a vase. You need to keep control of your spasm. You’re called to the same amount of self-management as anyone else is, so start now.”

Every Sunday, his parents took him to Acts Full Gospel Church of God In Christ in Oakland, where Herman first discovered dance. “Praise dance was very big in those years, when I was five, six, and seven,” he says. “I was exposed to people who would feel this overwhelming energy, this power that would cause them to dance. I was born into a body that wasn’t necessarily made for dancing, but if something overwhelming and powerful was coming forth, if God breathed it, then it was available to me. Church was the first context in which I danced without any kind of hindrance or inhibition.”

As preteen self-consciousness set in, though, he retired to the sidelines during praise dancing. It would be more than a decade before he once again shed his inhibitions. Despite his resolve to prove the doctors wrong, he still held deeply negative views of people with Cerebral Palsy, and feared for his future with the condition. “I’d see bedraggled homeless men doubled over, palsied bodies that weren’t taken care of, and I remember thinking that would be my trajectory, really,” he says. “That eventually, my limbs, musculature, everything would just degenerate. When you see someone who might have Cerebral Palsy, you don’t usually see their strength, freedom, liberation, you don’t see upward mobility—and that scared the heck out of me. You’re like, ‘what’s my position gonna be?’ So it was hard as a kid to think beyond that.”

I’d see bedraggled homeless men doubled over, palsied bodies that weren’t taken care of, and I remember thinking that would be my trajectory, really…

As an undergrad at NYU, Herman chose to study writing—because it involved minimal use of his body, so he figured it was the only form of creative expression that was really available to him.

Herman became a dancer almost by accident. In the summer of 2011, as an education apprentice at the New Victory Theater in New York, he signed up for a week shadowing the choreographer Shawn Curran, assuming he’d work as a teaching assistant. But on his first Monday, “Curran wanted me to be a participant. He invited me to do all the dance exercises that the public school teachers are doing.” By Tuesday, “Shawn was harassing me to dance. Of course, he knew I had a disability, but he thought I could do my own, different movements”

On Wednesday, Curran told Herman about a choreographer named Heidi Latsky, whose modern dance company’s mission is “dedicated to redefining beauty and virtuosity.” On Thursday, Curran handed Herman a ringing phone with Latsky’s manager on other line. “The following week, I was in a studio auditioning for Heidi,” Herman says. He landed a role in the GIMP Project, a series of dance pieces that aim to challenge preconceptions about beauty and body image.

“I had zero ambition to do dance,” he says, “so for Heidi to see something in me was incredibly energizing and beautiful. I now call Shawn my fairy godmother.”

Soon, Herman was performing GIMP with Latsky at Lincoln Center.

[Editor’s Note: In the above performance, Herman can be seen at the beginning, then again at the 3:20 mark.]

Of the intentionally provocative title, Latsky wrote: “‘Gimp’ is a word we’re taught not to use, just as we’re taught not to stare at people who look different.” However, the title embraces the lesser-known Oxford English Dictionary definitions of the word:. “fighting spirit; vigor” and “to turn, vacillate, tremble ecstatically.” These definitions were the foundation of the GIMP Project, which featured dancers of “all shapes, sizes, ethnicities, races, people with disabilities, people without disabilities.”

Among the cast was a bilateral amputee, doing an aerialist number using strands of purple silk; a woman who was eight months pregnant;  a couple of deaf actors; a burn victim; wheelchair users; a transgender person; older people; heavyset people; little people.

Dance became a platform to shake up how you think about dance, disability, my body… it’s activism by presence.

With whirling limbs and electrified shudders that echo his childhood praise-dancing in church, Herman played a role previously played by Lawrence Carter-Long, an influential performing artist and activist with cerebral palsy.

On stage, Herman’s limp becomes “an angry strut,” as the New York Times put it in a review of the “beautiful and moving” GIMP Project. What he lacks in mobility on his left side he more than makes up for with his muscular right side, which trembles ecstatically, per the preferred Oxford definition of “gimp.”

[Editor’s Note: Herman can be seen performing at the 25:30 mark in the video embedded above.]

“Dance became a platform to shake up how you think about dance, disability, my body,” Herman says. “It’s activism by presence.” In the summer of 2012, Herman became a full-time dancer in Heidi Latsky’s company; now, he also works as the company’s development consultant.

“My Christian upbringing and dancing in church did relay a kind of freedom in the body and the idea of investment; like, God has endowed you with this body, so use it!” he says. “And with that, you dance freely and maybe even dance professionally. As I have a disability and disability is characterized by limited mobility, I’m tempted to think that my dance career is divinely designed to upend our notions of what’s possible.”

My Christian upbringing and dancing in church did relay a kind of… idea of investment; like, God has endowed you with this body, so use it!

In 2017, a dance company like Latsky’s, which features disabled and non-disabled dancers, is still a rarity in the world of performing arts. When starting out, Herman had to write the script for himself; he didn’t have a single example of another professional dancer with Cerebral Palsy to model himself after. The scene is starting to change—Herman mentions fellow young performers with Cerebral Palsy like Jessy Yates, an actress and activist; Mark Travis Rivera, a choreographer and activist; and Greg Mozgala, a dancer—but performance is still widely seen as off-limits to the disabled. What would it take for Latsky’s approach to become closer to the norm instead of the exception—for the performing arts to become more automatically inclusive?

Herman suggests that, while established performing arts institutions should strive for more inclusivity and diversity of representation, cultural change will rely first on people with disabilities refusing to internalize stereotypes—and insisting on their own worthiness instead. “If more people with disabilities were audacious with their lives, identities, and beings and thought of themselves as worthy to grace Lincoln Center or the opera houses or the film world,” Herman says, “I think there would be this thing that would happen wherein we could not be silenced.”

Top photo by Dan Kim. 

Essays

The Kiddie Car Syndrome

Steering a loved one through illness can bring back to the surface childhood disillusionments long thought forgotten.

The summer I was three, my parents took me to Jones Beach to play in the sand and drive the kiddie cars around a small circular track.

I took driving very seriously, negotiating every twist and turn with elaborate care.  And my efforts did not go unnoticed.

“Look how well she drives!” cried my mother.

“She stays right on the track,” said my dad.

I was impressed by my own virtuosity.  In fact, I was so good that when we went back the next year, the kiddie car operator remembered me.

“There’s that little girl who never goes off the track!” he said.

Wow! I must be really good.  I tried not to let the exhilaration go to my head as I carefully turned the wheel, not once veering off the track.   And then, inexplicably (I must have suspected something) I took my hands off the wheel.  The car kept circling the track, maneuvering perfectly around the curves with no help from me.  I was crestfallen.  I was also pissed off.   The adults had given me the distinct impression that I possessed a rare talent for kiddie car driving.  And I had believed them!  Now, it turned out, I hadn’t been doing anything at all.  Nothing, nada; it was all an elaborate lie.

This experience left me with a lingering suspicion of adults.  What other fictions were they perpetrating?   I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.  And the kiddie car syndrome – the illusion of control – was a thing of the past.

Or so I believed.

“I stopped leaving cookies out for Santa at Christmastime; the kiddie car outrage had turned me into an agnostic.”

For over ten years now I’ve been guiding my husband through various health crises including several strokes, two valve surgeries, and a series of life-threatening leg bleeds caused by his medication.  John, who was a college professor for fifty years before he retired, is more interested in the geneses of totalitarianism and the paradoxes in Gulliver’s Travels than the irregular beatings of his heart.  So I became his health advocate.

And I am a fierce advocate.  I foresee danger and circumvent it at every turn.  Once I ran into a hospital procedure room where John was about to have an angiogram.

“Don’t put the catheter up his left leg!” I cried.

John had been in the hospital for several days and I suspected, from something he’d said just before the procedure, that he’d had a bleed in his left leg during the night.

My dramatic announcement stopped the doctor cold, which was a good thing because I was right about the left leg.  John had sustained a bleed during the night, and putting a catheter up his newly-injured leg might well have resulted in a more serious bleed. Once again, with skill and foresight, I had narrowly averted disaster.

For the next five years, John’s health was relatively stable, which, in the language of medicine, is a beautiful word.  Then, two weeks ago, he had a seizure in the middle of the night.   I was completely unprepared for this and didn’t recognize it for what it was (a post-stroke seizure).   I fully believed I was witnessing my husband’s death.  After calling 911, I shouted to our twenty-year old daughter.  Together we managed to turn him over so he could breathe freely until the ambulance arrived.

John is home again now, and doing well.  But his seizure reanimated the painful disillusionment on that long-ago day in Jones Beach.  During the past ten years, I believed (or talked myself into believing) that I was single-handedly responsible for my husband’s health and well-being, vigilantly steering him around sharp curves and avoiding dangerous cliffs with diet, exercise, and close monitoring.  Now, once again, I’m reminded that I may be in the driver’s seat, but I’m not steering the car – at least not one controlled by a kiddie car operator who keeps me on track.  The car I’m driving now (metaphorically) is more like a bumper car.  I still manage to circumvent some collisions, even some dangerous ones.  Those I don’t avoid I interrogate myself about endlessly.  What if I’d stayed to the outside track?  Could I have avoided that last bump?  What about the red car racing straight towards us?  Can I make a sharp turn and speed away?

In spite of my vigilance and John’s cooperation, there are bumps and jolts I have not been able to avoid.  Some have been more sharp than others.

People often say to me, “You’re doing so well with John!” or “I’m really impressed with how well you take care of John.”

To me, it doesn’t feel like I’m doing a spectacular job caring for John, because the outcome is not spectacular.  After all, inevitably, the ride will come to an end.  But for right now, I’m keeping hands securely on the wheel.

Illustrations by Shannon Wheeler.

Profiles

The Singer With Honeycomb Bones

Along with her faithful service dog, Connie, Ailsa Lipscombe traveled from New Zealand to Chicago to pursue her life's greatest passion: the music that lets her body feel free.

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.