Image Description: Portrait of Kae sitting on a stool, against a beige tie-dye backdrop. She is wearing a white loose dress shirt and beige dress pants, holding a black cane with her right hand. Taken by Roland Guballa, 2022.

Image Description: Screengrab of Kae’s Petition banner and title on Change.org.

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Image Description: Screengrab of Kae’s written portion of her Petition on Change.org.

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Image Description: Screengrab of Kae’s written portion of her Petition on Change.org.

In honour of #DisabilityPrideMonth, I created a petition for y’all to sign. I realized we don’t have a flag emoji to represent us, so I plan on submitting a proposal to Unicode in the upcoming months. Please sign + share so we can get our ♿️ flag emojis! ♥️

ACTION REQUIRED: Please sign here.

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Image Description: Updated Disability Pride Flag by Ann Magill in 2022.

Having All Six "Standard" Flag Colors: signifying that Disability Community is pan-national, spanning borders between states and nations. The Black Field: Mourning and rage for victims of ableist violence and abuse. The Diagonal Band: "Cutting across" the walls and barriers that separate the disabled from normate society, also light and creativity cutting through the darkness. The White Stripe: Invisible and Undiagnosed Disabilities. The Red Stripe: Physical Disabilities. The Gold Stripe: Neurodivergence. The Blue Stripe: Psychiatric Disabilities. The Green Stripe: Sensory Disabilities.

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Update: Just learned there is a new pride flag design update by the designer herself. Read here.

Image Description: Old design of the Disability Pride Flag, created by disabled artist Ann Magill in 2019.

It’s officially Disability Pride Month! This is your much-needed reminder that our tenacious and unstoppable community is a natural and beautiful embodiment of the human experience; we are here, we exist, and we are no longer hiding in the shadows and depths of ableism and exclusion.

To my disabled community: our visibility matters more than ever as we are still fighting for basic human rights, accessibility & marriage equality today.

To my non-disabled friends: disability isn’t a bad word, and you bet your ass that our supportive community would be there for you in a heartbeat should you find yourself here. Be kind and support your fellow disabled friends, always.

Happy Disability Pride Month 💙💛🤍❤️💚♿️

with love, k.

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Image Description: Kae is sitting in her living room floor after a workout, basking in the evening sunlight.

Image Description: A close-up shot of Kae’s hand holding a philodendron vine against a white background, visibly showing new growth where the end has been cut off. The new growth starts on the left node instead, symbolizing perseverance and a new direction in life.

My body may be rooted here, but my spirit yearns to taste foreign land. I've always wanted to experience different parts of the world, and I naively thought I would get to...that is until life decided it would give me a major detour—or possibly a dead end.

After 31 years, I find myself still on the sidelines wondering when and how in this lifetime; the feeling I carry inside teeters between hope and looming despair.

My doctor once described #MuscularDystrophy as a form of accelerated aging, and while I know I’m still relatively young, I’ve often felt way beyond my years for most of my life. The silver lining in this figurative but insurmountable ticking clock has me saying, ‘if not now, when?’, as my guiding force for living a more present and fuller life.

All of this is to say that I’ve been working hard behind the scenes on lining all my ducks to make it happen someday. I’m not sure when but I trust that as long as I have a will, I will find a way. All in good timing. x

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Image Description: Kae is on her balcony with her back facing the camera, she is looking over her shoulder and smiling. It is sunny outside and she is wearing sunglasses and a black bikini. The skyline of Toronto is visible in the background and the word “Home” is written in white, all in capitals with a serif font and it’s overlaid in the sky to mimic a real estate magazine cover design.

See full Instagram post here.

I remember when I was looking for an accessible rental home, it was nearly impossible. I was often met with potential landlords turning me down due to my disability; it didn’t matter if I had excellent references or a high credit score. The lack of accessible/affordable housing options was very discouraging and exhausting. Accessible homes were usually overpriced condos and almost all real estate listings didn’t provide any accessibility information—and if they did, they were wrong. I would show up to the viewing only to learn I couldn’t get in; people need to know that accessibility misinformation is life or death for some of us. 

The need for accessible housing is a crisis. Despite 2.6 million Ontarians* being disabled, there is no policy requiring barrier-free housing and the accessible housing waitlist is very long or impossible to get onto because when people finally move into their accessible home, it’s for a lifetime. 

It took many years until I found my current home and every day, I thank the universe for giving me a break; I never want to go through that painful experience again. I already know I plan on staying here for as long as I can afford to because it is the most accessible home I’ve ever lived in that has allowed me to live with independence and dignity. Also, accessibility isn’t just about what’s built into the home but its location too, and I’m lucky to be situated in the most ideal spot. I hope one day I get to build my fully accessible dream home but for now, I’m grateful for a place I can finally enjoy and call safe haven ♥️.

*source: Accessibility for Ontarians with Disabilities Act Annual Report 2019

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Image description: portrait of Kae in the golden hour light, wearing a black tank and a silver double curb chain necklace by Daisy London Jewelry.

Image description: close-up shot of Kae’s neck wearing a silver double curb chain necklace by Daisy London Jewelry in the golden hour light.

If you see me wearing this double curb chain necklace every day, yes you did. I’m not one to switch up my jewelry often but I’m very excited to be adding this new statement piece to my jewelry capsule. Thank you Daisy for the gift. All of Daisy London jewelry is responsibly sourced and ethically handcrafted in 100% recycled sterling silver.

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Recently came across remnants of my past, and it unveiled deeper feelings about who I’ve become. This old life cast sculpture was a literal and figurative remembrance of all things lost and gained, for better or for worse but nonetheless, a poetic story of my journey with adversity and Muscular Dystrophy. 

I reflected in awe and compassion for my younger self, one that lived in a constant; anxious and fearful of a daunting future I wasn’t sure I’d ever meet with grace. 

It’s been almost 12 years since that mould was made of me and I’m here now—exactly where I’m supposed to be. When I learned of the sculpture breaking, I shed many tears; not because I was in mourning but because it showed me I survived the trauma of my past, and it served as a cathartic experience to release what I so deeply clutched onto. 

Today, the path seems clear as I no longer live in darkness, for I know a lot has been lived and triumphed. Instead, unknowns are met with an optimistic embrace sprinkled with courage. I’ve found purpose, hope, and transcendence to keep me aglow with fire and light—and despite it all, I’m here still fighting this fight, parading around as a living testament to my perseverance. 

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Image description: Kae is in her living room, in child’s pose with her eyes closed, hugging and resting her head sideways on a yoga wheel.

Image description: a photo of a snail in nature sitting on top of a wild mushroom, while eating a blueberry taken from a nearby blueberry bush. Source: Google images.

Image description: Kae is in her living room, in child’s pose, hugging and resting her head sideways on a yoga wheel while looking into the camera.

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#MuscularDystrophy is a disease that continually tests every fibre of my being. It’s progressive and debilitating; it’s unpredictable and off-putting; it backs me into a corner and makes me confront my mortality every single day. I could choose to lie down, and it’d be understandable but I’m choosing life instead—and it’s a lot of hard work.

Towards the end of undergrad, I had an epiphany. I experienced a deep shift that forever changed the course of my life. I decided life was worth living and fighting for and immediately started making radical changes to my lifestyle. I sacrificed a lot, including a version of myself. I ingrained in me that I had no other choice but to dedicate myself fully to the pursuit of the life I dreamed of if I wanted to truly live.

I started with the external changes: rapidly switched my diet and purged toxic makeup and household items, then I focused on parenting my inner self. I was like my own lab rat, spending all my time/energy neural conditioning myself to literally create a new me; I was healing the story of who I was. It wasn't easy implementing these changes especially when everyone else around me, my whole community operated on a different set of rules, but I always kept my end goal in mind. That's the power of hope, gratitude, and vision: it keeps you going. I worked on accepting my incurable diagnosis but I couldn’t accept what was expected of my prognosis.

Today, I’m able to listen to my body, become more in tune with it and move towards ways of thinking and being that makes me feel better in my body, mind and soul. It’s been eight years of this disciplined journey and my only focus is being fully committed to living deeply and controlling what I can. I now live by the rule of putting all the intensity of myself into moments and living them as if they were my last because tomorrow isn’t promised.

Admittingly I wasn’t always sanguine about my situation. Fear and anxiety still get the best of me but I remind myself about where I’m at today; no longer spending energy on surviving but rather on creating, healing, and loving. I’m able to take it day by day into the unknown. All of this is to say: time has a way of softening and I’m happy to be here—even at a snail’s pace. xx

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Living with this unique disease feels very lonely and can sometimes feel like with every ounce of energy, courage, and transparency I put out into the world about my journey, I’m still talking to myself. But then every once in a while I’ll get a beautiful message like this (see image on right)…and remember why I do what I do. Sharing my story is worth every moment of doubt and insecurity. xx

p.s. if you’re not familiar with my title, please see Simon Sinek’s work.

Image Description: An Instagram story of a selfie of Kae in her bathroom mirror, she is holding up her shirt to show off her toned midriff area, taken on February 5, 2021.

Image Description: A direct message on Instagram from someone living in India about how much she appreciates my content and how it’s helped her come to terms with her diagnosis.

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Don’t be shy, send these to your crush(es). 🌹 Happy Valentine’s Day. xo

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Image Description: Self-portrait of Kae, posing in her living room, holding herself closely while wearing a sheer black bralette and pair of baggy blue jeans.

Lately, I’ve been reflecting a lot on my relationship with my body and self-image. In the present moment, I’m so proud and grateful it moves me in whatever way it still can but in the past, I disassociated and I’m only realizing it now. Moving and living in a body that no longer feels like mine is a helluva journey; I’m always having to relearn how to love myself with every noticeable change in ability because MD is progressive. Moreover, I’m still learning how to undo the damage of ableism, racism, neglect, and shame I had carried deep inside me all these years. 

Lots to unpack here but I’m very excited to get reacquainted with me again. The real me. I want to feel alive in my skin. I want to be unapologetic. I want to rewrite the narrative I used to tell myself; more celebration and less comparison. This body is my forever home and it is valuable no matter what state it’s in. Self-acceptance has a healing ripple effect, and through thick and thin, I’ll continue to show up for as long as I can—for me, for you, for all of us.

P.s. I took advantage of the sun yesterday and took these self-portraits. Don’t underestimate the power of wearing a good undergarment to make you feel some type of way—idk how it works but it works. It's the little things. 😌

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Image Description: Kae is sitting on a wooden stool, leaning on a black cane on her right side, her legs are extended towards the camera, taken against a yellow background in the studio. Photo by: @patrick.estebar

Today is our day, a day to be seen, heard, and celebrated. More than 1 billion people live with a #disability, and that’s more than okay. It doesn’t make us any less human—if anything, it makes us superhuman because we continue to rise and push through all the daily challenges and barriers presented to us. We don’t give up. At some point in life, we will all experience a physical or mental disability, or both, whether it’s temporary or permanent, now or later—either way, it’s inevitable.

To my able-bodied friends: don’t wait until you’re disabled to become our ally. We can’t control when and how we experience our body’s limitations, but what we can control and do together is actively combat discrimination, advocate for our rights, and create an accessible and inclusive environment for people with disabilities.

Happy International Day of Persons with Disabilities to all the amazing humans fighting ableism and inaccessibility every day.

Lots of love,

k.

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Having a disability comes with many challenges, and one of them is hair care. If you never see me “done up”, this is why: the space could be inaccessible, arranging transportation might not be possible, salon prices are way out of budget, etc; this is why I often end up compromising on my appearance and opting for a low maintenance lifestyle—not because I want to but bc I have to. There are so many things to consider before we can get our hair done. 

Due to these barriers, I get a haircut/colour once a year. Inaccessibility tells me that disability and beauty can’t coexist. We shouldn’t have to sacrifice self-expression and self-care when we already have to do that in many other areas of our life, but with companies like Suntouched, we don’t have to!

I teamed up with Suntouched because I saw an opportunity for our chronically ill/disabled community to enjoy an accessible product. As someone who likes to lighten their hair, this product worked as a great salon substitute; it’s affordable and I can do it in the comfort of my own home. The spray nozzle was surprisingly easier to press down than most bottles, and it’s vegan, cruelty-free, and safe for all hair types! I wanted something subtle so I’ve only used it on 4 occasions, but you can go lighter until you reach your desired colour.

Use code: KAE10 to save 10% off your order. Happy hair day, my friends! x

Image description: Bottle of Suntouched sitting in the golden sun on a striped fabric background 

Image description: A “before” selfie picture of Kae’s hair.

Image description: Picture of Kae’s hair results from using Suntouched.

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Image Description: Selfie of Kae sitting on the floor during golden hour.

Coping with this disease ebbs and flows: no matter how much I actively surround myself with love and joy, do things that make me feel good, and give myself plenty of rest, I can still feel moments of temporary numbness and exhaustion; all part of the human experience, I suspect.

Our faith will naturally falter when there are additional contributing factors, i.e. hormone changes, S.A.D., stress, etc—but that’s life, isn’t it? Nothing is ever constant and nothing is permanent. We’re only here in the now, so it's best to take it all in stride, day by day.

Hugging myself a little harder as of late and not judging myself for having discouraging feelings. This too shall pass—and to everyone else: remember to exhale once in a while, will ya?

Love, k.

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Image Description: Kae is suspended in a robotic treadmill training system Lokomat machine taking a selfie in the mirror.

For so long, I've always wanted to try something like this and felt frustrated Canada lacked in this department—but then I finally discovered there was a clinic @neurochangers in Toronto that offered this type of therapy. I was more than ecstatic to go. So far, this is the closest I'll ever get to living my exo-skeleton dreams. It felt unreal to be suspended and stable in my body since my diagnosis over a decade ago.

There are some moments in life you'll never forget, and this is one of them for me. Words can't even describe the joy I experienced, it was pure bliss. It's really just one of those things you'd have to try for yourself to know what I'm talking about. Although something like #MuscularDystrophy is said to be incurable, it doesn't mean we give up hope and curiosity—we never know what the future holds and what we're capable of ourselves. I really believe in this lifetime, there will be a cure for us—but for now, we beat our circumstances by how we live. Grateful for this technology and the people working hard on our behalf to help us live a more quality life. Here’s to hoping for more affordable and #accessible healthcare.

See more on my Instagram.
Note: Not a sponsored post. Paid with my own money. Please contact your local clinic for more information.

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Image Description: Photograph of Kae’s hand holding a banana against a white wall, overlaid a solid mustard yellow background with Instagram username @lettereleven in the bottom left corner of image.

Every time I saw my neuromuscular specialist, I would get reminded that there was no cure for my disease. (Imagine hearing that every single time and knowing it still rings true today). I’d leave the clinic in low spirits, begrudgingly accepting the looming fate ahead of me—something I’m sure many patients do. I don't remember when the turning point for me was but I just remember I was tired of feeling like I was waiting around to die.

It wasn’t until sometime in my early 20’s that a series of events led me to change my relationship with food. Knowledge became my superpower, and the more I learned about nutrition and the human body, the more I no longer felt like a victim. My newfound health journey was powerful and transformative; it felt like a big F you to the disease. But damn, it wasn't easy. It took many, many years of unlearning, relearning, patience, and money to implement a new lifestyle. I think this is what they call self-love. I really had to kick my own ass if I ever wanted to beat the odds.

All of this is to say: I really like this evolved version of me, and I'm a better—and ironically—healthier person today because of #MuscularDystrophy. I’m now more in tune with a body I previously resented, and I actively get to reclaim my health—something I believed I forever lost control over. Today, optimizing health is non-negotiable for me because food is medicine, and you are what you eat—so take care of yourselves, you only get one life. x

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Image Description: Kae is sitting on the ground in her living room holding her black boot up, exposing the sole to the camera. She is leaning on her left arm for support as she looks into the camera. She is wearing a black CK sports bra, black high-waisted workout shorts and white thigh-high socks detailed with 3 black stripes at the top.

When people ask me what kind of exercises and stretches I do, I don’t know how to tell them that the panda is my inspiration for movement lol. I don’t know exactly what I’m doing but as long as I try to have fun with it and if my body allows me, I’m happy to be doing something. I don’t compare myself to anyone else’s progress or workouts, either. We all have our own unique milestones. My advice? Listen to your body and challenge yourself once in a while—you’ll be surprised to learn what you’re actually capable of. If there’s a will, there’s a way, remember that. And don’t forget to be kind to yourself, too. Happy Friday, my loves. x

#LifeWithMD #LetsEndMD #MuscularDystrophyAwareness #DisabilityVisibility #MindOverMatter #TheLittleThings

Note: See Instagram for full carousel post/visual experience.

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Image Description: Kae is on the ground, leaning back with her legs extended towards the camera. She’s wearing a lime green top and black dress pants.

Happy #LimbGirdleMuscularDystrophy Awareness Day, my LGMD warriors. I’m wearing lime green today and thinking about all the amazing humans I know living with this rare disease, and how lucky we are to have each other in this lifetime 💚.

x

#StrongerTogether #LetsEndMD #MuscularDystrophyAwareness #FindACure #Community

Photo by: @patrick.estebar

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Image description: Kae is sitting on the ground of a vintage-themed studio, reaching over to hold her feet, wearing a mesh see-through neon green top and black pants, with all her hair pushed to her right side, as she’s looking left at the camera from her side profile, 2021.

I’m most comfortable sitting on the ground—feel the safest here, too. Barefoot, anchored, and free to move with confidence; it makes me feel good. I get to forget about life’s limitations for a moment. It’s nice, it’s liberating—and it’s not often, so I’ll make the most of it by stretching anywhere, anytime I can because beating the odds means every little action adds up.

Although sometimes it can feel like I'm swimming against a current, sometimes I get fatigued and impatient and wonder if there's any point in my self-discipline. Will my conscious efforts lead me somewhere? I know present me is a fighter and I know future me will thank me but still, it can feel dim—but then I’ll recall the story of The Tortoise and the Hare and revert to hope and belief in potential/unknown. It’s a continuous polarizing dance but I have to see it through. ‘Slow change is lasting and the vision I hold for myself is obtainable’, I’ll remind myself, ‘everything in its time and season’.

All of this is to say: The best of you is yet to be—but only if you allow yourself to trust in the transformation, death, and rebirth of your evolution. Be patient and always be moving but move at your own pace. x

Love always,
K

Note: See Instagram for full carousel post/visual experience.

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Image Description: Kae’s hand is holding a rooted pothos plant cutting against a white wall.

As above, so below; as within, so without. Root down to rise up, stay grounded, and stay loving. xx

Love always, k.

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Image Description: cropped portrait of Kae holding a cane behind her back with a superimposed tattoo that says Disability Pride in gothic lettering, July 2021.

Experiencing a #disability and living with one is truly a gift. I won’t talk about the struggles, losses, and grievances that come with my disease in this post but I will say it’s given me invaluable perspective—and it continues to be my greatest teacher in life. Personally, I feel #DisabilityPride isn’t just about my identity; it’s about this amazing community I have the privilege of being a part of, and it makes me so damn proud of each and every single amazing, resilient, human being fighting for their life, equality, and justice. I get to witness everyone channeling every bit of passion and grit towards creating a better world and that is a powerful force to revel in. It’s unspoken. It’s unshakeable. It’s unmatched. We are a family. We take care of each other and I’m proud of us. Happy #DisabilityPrideMonth ♥️.

With love, K.

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