May 12th is the International Awareness Day for chronic neuroimmune diseases. To shine a light on these extremely prevalent yet little-known conditions, we caught up with performer, producer and disability advocate Jacqueline Ko, an award-winning Canadian soprano and co-founder of Opera Mariposa who has lived with the neuroimmune disease Myalgic Encephalomyelitis (ME) since the age of six.
Have you always known that you wanted to be a singer?
I’ve always loved music. As a child I sang in the school choir, played in the school band, took Kodály and music theory and piano lessons – though I eventually had to give up piano after I got ME, because it wound up being too hard on my hands and arms.
I started singing lessons at age ten, and my teacher happened to be a Wagnerian soprano who introduced me to the world of opera. I’d actually just had my first couple voice lessons when I was injured in gym class, which led to a severe relapse. That was an extremely difficult time for me, and singing was what kept me going. I was so ill that I often couldn’t sit up or have a conversation. But I’d try to save up all my energy for months just to have a short voice lesson. I was incredibly lucky that my voice teachers were so supportive and understanding of my health situation.
Once I discovered singing, I never looked back. Even though there were times it seemed impossible, I never doubted that singing was what I wanted to do with my life.
Can you tell me a little bit about your experiences as an opera singer with ME, and any challenges you may have faced?
I think that as a singer, the biggest challenge for me has been learning to work within my limits – that is, working with my health condition rather than trying to ignore or fight against it. ME impacts the body in many ways, but the hallmark symptom is post-exertional neuroimmune exhaustion. It’s a complex situation involving cellular function and energy metabolism, but in layman’s terms: our bodies’ “batteries” take longer to charge than for healthy individuals, and they don’t charge to 100%. Both physical and cognitive activity drain those batteries quickly, and when the power reserves get too low, different body systems start malfunctioning or shutting down. So whenever a person with ME exerts themselves, we need to pay for it afterwards.
In a very mild case of ME, this might mean you can work full-time, but need to rest and recuperate on evenings and weekends. With severe ME, this could mean you don’t even have the energy to chew or digest your food. I’m very fortunate to be able to pursue singing, but my process and working style as an artist are informed by my health condition.
I try to plan everything out ahead of time, budgeting my energy by the day, the week, the month and the season. I schedule “recovery time” as an essential part of the production process. Sometimes, my health situation means I need to make hard choices, like being selective about what projects I take on, or sacrificing other activities to ensure I can do my best on a production. It’s pretty involved – but in a way, it’s also not that different from any other type of budgeting.
Have you faced any difficulties or prejudice in the industry because of your ME?
Actually, I’ve been very fortunate in that regard. Of course I have no way of knowing whether my health condition has influenced any casting decisions – but when colleagues have brought it up with me directly, it’s generally been in a positive and supportive light. For example, directors have asked me whether specific staging or choreography will present a challenge, or companies have told me to let them know if I need anything during rehearsals.
As a general rule, I don’t bring it up myself until I’ve already worked with a company at least once before. Of course I don’t take pains to conceal my health condition – with my advocacy work, it’s a matter of public record – but I feel like once I’m a “proven product”, so to speak, it makes any conversation about my health much easier. People don’t have to second-guess how my ME might or might not affect my work as a singer, because they already know what I’ll be bringing to the process.
Do you have any anecdotes or advice to share with other aspiring singers with chronic illnesses and disabilities?
Well, I try to be cautious about generalizing my personal experience to others, since even just within the ME community there’s such a wide spectrum of symptoms and experiences. That being said – many performing arts companies these days are actively working towards more diverse and inclusive casting, and I feel that an intrinsic part of that will be greater representation for performers with disabilities. My own company, Opera Mariposa, is by necessity set up to accommodate a variety of accessibility needs. That encompasses not only the performances themselves, but our rehearsal process and our season programming. We’ve worked with many artists in all stages of their careers who happen to have a disability or chronic illness. So the opportunities are out there.
Another thing I’d add is – it’s an intensely personal decision whether to disclose one’s disability or health situation, but being out about it can be an incredibly powerful and empowering thing. For me, it’s also an important step in fighting stigma, changing and broadening perceptions of disability, and working towards creating a more inclusive space both on and off the stage.
Can you tell me about your upcoming show, ‘The Impossible Dream’? What repertoire will you be performing, and why did you choose it?
The Impossible Dream is on May 18th, and it celebrates the ten-year anniversary of my first Benefit and Awareness show for chronic neuroimmune diseases. I’ll be performing pieces from the benefit shows I’ve done throughout the last decade, including arias from Hamlet, Madama Butterfly and La rondine alongside musical theatre songs and even Disney highlights.
There’s a wide variety of repertoire, but the common thread is that each song has a strong emotional resonance for me, as well as a specific narrative purpose. Essentially, I’m weaving together all these different songs to tell my story, both as an artist and as an individual with ME. This means that The Impossible Dream is a very personal show for me, but hopefully it also makes it an interesting journey for the audience. The evening’s proceeds will benefit the ME | FM Society of BC, a fantastic Canadian charity that works to educate people about ME and Fibromyalgia, and provides essential support and resources for patients and their families.
What are your hopes for the ‘The Impossible Dream’ in terms of advocacy?
I hope that people with chronic neuroimmune diseases leave this show feeling like they can be seen and heard – that in fact, there’s a whole community working to support them, and to help amplify their voices to effect positive change. I hope that people who had never heard of these conditions will come away with a greater understanding. And I hope that by telling my story, I can add my own voice to the global movement for ME health equality, and work towards better recognition and inclusion of those with disabilities and chronic illnesses.
The Impossible Dream takes place on Saturday, 18th May 2019 @ 7:30 pm. For more information about the show and to buy tickets, visit https://theimpossibledream.brownpapertickets.com/.
Biography
Multi-award-winning performer, producer and disability advocate Jacqueline Ko has lived with the systemic neuroimmune disease Myalgic Encephalomyelitis (ME) since age six. A versatile artist who has performed in opera, theatre, musical theatre and film, her performances have been hailed as “powerful” (Hello Vancity) and “breathtaking” (Hilary Clark for Opera Canada magazine), and she was recently deemed “flawless” (Review Vancouver) in the title role of Suor Angelica. Some of her other role highlights include Queen of the Night in The Magic Flute; Mme Herz in The Impresario; Lauretta in Gianni Schicchi; Sharon in Master Class; Hansel and The Witch in Hansel and Gretel; Norina in Don Pasquale; and Olympia in ESUM in her Fringe Festival debut. Also an acclaimed concert artist, critics have declared that “Ko knows exactly what to do with an absolutely gorgeous voice, and her acting…can send chills up the spine” (Review Vancouver). She has been praised for her “definite aptitude” (Opera Canada) as the founding artistic director of Opera Mariposa, Canada’s first fully disability-led and run opera company, and is internationally recognized as a disability advocate whose Benefit + Awareness shows have raised over $69,000 to date for chronic neuroimmune diseases. Learn more at JacquelineKo.com
