Meet Our Muse: Kristina
Can you tell us who you are?
I’m Kristina, a daughter, sister, niece, cousin, and friend to some of the most incredible humans. And an obsessive cat mom to the most precious kitten. I am a creator, whether that's in the kitchen cooking, on the computer, designing content for work or play, or writing things no one will ever read, and creating the world I seek to live in. I am a creator at my core. I work in the non-profit sector, while I don’t define myself solely by my work, I am passionate about creating a more inclusive and accessible society, and my job allows me to do that every day. I am a curious learner, a passionate advocate, inspired by people who are better than me. I don't believe I will ever be truly satisfied with who I am because who I will become is all too enticing.
You were born with Facioscapulohumeral Muscular Dystrophy, can you tell us about this condition?
FSHD (the acronym) is the most prevalent form of muscular dystrophy, affecting approximately 1/8,000 people. Most people, around 70-80%, get the disease or genetic mutation from a parent, while the remaining 20-30% are considered spontaneous mutations, where the genetic mutation occurs after conception. Most people are diagnosed during or shortly after puberty. Around 20% of patients are infant onset, meaning they show symptoms before the age of ten. If you've ever wondered how unique I am, I am both spontaneous mutation and infant onset, so around 1/128,000. FSHD is characterized by pronounced muscle weakness in the face, humeral, and scapular muscles- hence the name, but it actually causes muscle weakness in all skeletal muscles. While I was born with the disease or genetic mutation, I was not correctly diagnosed until I was sixteen. Yes, sixteen. I was misdiagnosed with a completely different and unrelated rare disease at age five. At that age, I only showed weakness in my facial muscles, and for anyone to be showing such specific symptoms of FSHD at age three/four/five with two healthy parents, it would have been basically impossible for the symptoms to be correctly diagnosed.
What role has this had in your life? Has its role changed throughout your life?
The process of getting correctly diagnosed took around two years. Spending age 14 to 16 hopping from doctor to doctor, physio to physio, naturopath to an acupuncturist who all told me I was complaining too much about muscle pain and if I just worked harder everything would be easier was an incredibly prominent part of my life as well as my development as a human. Getting diagnosed was such a heartbreaking and transformative experience for me. At sixteen and sitting with yet another specialist at yet another clinic, was the same old, same old, but unlike everyone else, he had the answers. The life-altering, devastating, yet relieving answers. I wasn't complaining. I was working as hard as I could. And it wouldn’t get easier if I worked harder. But hearing that you have an incurable, untreatable, rare, progressive disease will break your heart at any age. It was not easy at sixteen.
It's hard to say if the role has changed over the years, because the physical aspect has, of course. I have been getting progressively weaker for over a decade. The little things like the shoes or clothes I wear, or the semi-important things like what social events attend are dictated by my physical strength. However, I am not going to dwell on what my body was like when I was 12, 16, 18, or even yesterday, or else I'll get sucked into the tornado of ‘what if's’, and I'm not a good person when I live in that. When it comes to the macro level things like my career and charity work, the role FSHD has played in my life definitely has changed. I have been involved in fundraising for FSHD for about four years now, raising over $330,000 and speaking at five different fundraising events. I also started working for a disability arts non-profit last year. Check out Tangled Art + Disability if you want to know about the forefront of disability arts in Canada – where my lived experience with a disability informs every aspect of my work.
Like many life hurdles, having Facioscapulohumeral Muscular Dystrophy comes with its’ own set of internal and external struggles. How do you over come them?
Honestly, I don't think about external struggles on a day-to-day basis. They're just things. Things that make the ‘what-if's’ tornado look like a good place to call home if I think about them too much. I don't have anything to compare my body to, in the sense that I've never lived in a fully able-bodied body. I live in my own body. While how I adjust my life choices may seem like a struggle to able-bodied folks, it's just my life, and it’s not a struggle to me.
Internally... that’s a whole different question. When I was diagnosed, I had to grieve what I thought my life would look like, what experiences I would have, who I could have become, and learn to accept and love the life I have. Because FSHD is a progressive disease, and I have been getting progressively weaker for the last 12 or so years, the re-calibration of what acceptance looks like is the biggest struggle. Every few months it's a reassessment of what I need to accept about my life, my ability, and my future. That's the hard part.
And f***, waking up and going to bed with chronic muscle pain for over a decade is exhausting externally and internally.
Along your journey physical health has become not only important but predominant, how has it shaped your concept of physical health?
Living in a disabled body has shaped my concept of physical health in the sense that I don’t take advantage of what my body provides to me. If I take good care of my body, it will take care of me, obviously, in the best way it can. Besides the incurable disease, I am a very healthy person. I don’t get sick. I credit that to the care I show my body, by nourishing it, exercising it, resting it, and most of all listening to it.
What does physical health mean to you now?
I am a firm believer in the power of the mind, how the state of mind can influence the state of the body. I can look back on moments where I was physically doing well, and something happened to f*** with my mind and then my body turned on me, nothing changed except the toxicity of my thoughts. Working to exist in a positive state of mind regardless of my surroundings, or things out of my control is the best thing I will do for my health.
Physical health means treating my body, and thus myself, with respect in every regard, every day.
There are many misconceptions about people with disabilities, how do you combat the assumptions made about you in your day-to-day life?
That's a two-part answer. On one hand, I don’t care what people who don’t know me think about me. I never have. Misconceptions made about me, my life, and my abilities are not my concern. It's not my job to convince people of who I am and what I can do if they’re not interested. I have a lot of respect for people who live in disabled bodies and combat misconceptions about disability, theirs or in general, on a day-to-day basis. I don't have that energy, I don't have that interest and I don’t have that time. If you know me, you know me, if you don't, you don't. Challenging misconceptions about disability is not the rent I pay for living in a disabled body.
On the other hand, I work for a disability arts non-profit, where I am constantly working to create a more accessible and inclusive society. As well as creating a more accurate representation of disabled bodies in society on a daily basis. And I am good at my job, not only because I'm good at what I do, but also because I am able to bring a lived experience of disability to the table to inform the work I do around abolishing misconceptions about disabled folks. I sleep better doing the work I do.
We know that you’re an advocate for FSHD, was there a moment that made you want to travel and speak about it?
I personally wouldn't classify myself as an advocate for FSHD, I would classify myself as an advocate for myself, who has done, and will continue to do advocacy work for FSHD.
But I fell into advocacy work for FSHD out of anger. Not the greatest emotion to be motivated by, but it has worked out. I started working in advocacy when I was living in Toronto and my family was planning a fundraiser for FSHD in Vancouver. I kept an arms length because I was a full time student with basically a full time job, and honestly didn't like the idea of people fundraising around the idea that my life needed to be better. I was doing great. A few weeks before the event I found out about someone with a bigger platform, voice, and audience getting diagnosed with FSHD, and it angered me that they weren't speaking out. Later, I realized I couldn't be angry with them for doing the same thing that I was doing. So on a Tuesday I bought plane ticket to go and speak at the event on that Friday night. After an all nighter to get all my finals done, I got on a plane, wrote a speech, cried for the remainder of the flight, then made myself pretty, and stood in front of 250 people and spoke about my life and disability with honesty and intimacy I had never done before, and it was a hit. I have since been asked to speak at four other fundraising events in Toronto, New York, Seattle, and Vancouver. My work in advocacy was born out of anger; however, I continue to do it because I know my words have power. The ability to change peoples’ perceptions and views. And I know my presence has the power to alter a room.
What are some things you want people to know?
What do I want people to know? That’s a great question. When I have been asked to speak at a fundraising event, my goal is to always offer an honest and raw account of the human experience of living in a disabled body. Either to encourage change in the perspective of able-bodied folks, or to provide a voice of recognition and understanding to disabled folks. At fundraising events, I am very specific about how I speak, as the ultimate goal of speaking is to encourage people to donate their money.
At the end of the day, the advocacy work I do aims to dismantle ableist points of view that currently exist in society.
When do you feel most empowered?
I feel most empowered when I accomplish something successfully for the first time. The first time I lead a staff meeting at my job I felt empowered. The first time I make new dishes for dinner that are delicious and healthy, I’m empowered. The first time I was paid to speak at a fundraising event, I was on an empowerment high for months. Often I step back from doing new things out of fear: fear of discomfort, fear of failure, fear of losing control, so to overcome that fear is an accomplishment in itself, but for it to work out and be successful is incredibly empowering.
Which of your physical attributes do you love the most?
My eyes or my tattoos. My eyes because well umm there are pictures of me in this piece, so you can see why. My tattoos, because each of them is a carefully crafted testament of love to who I am and who I love.
Photography by Helen Mak