Lauren Pires

Transcript

Walking into my living room that day, you might have thought you were at a toddler's birthday. There were polka dots everywhere. Polka dot circles on my walls, polka dot streamers lining my windows, polka dot plates and napkins. I'd googled polka dot party inspo, and apparently in 2015, that was reserved for baby showers and children under six. It was a kindergartner's dream. It was also my 25th birthday. I've always loved birthdays. Maybe because the actual day of my birth wasn't exactly a celebration.

I was born with central core disease, a rare disorder where some of the mitochondria in my muscle cells is missing. You might have seen the meme or remember from science class that the mitochondria is the powerhouse of the cell, converting food into energy and energy into strength. But with my own strength at about 33% of the average person, not 33% less, just straight up 33%, the meme hits a little different. When I was born, I didn't cry. I couldn't suck to be fed, and I couldn't move my limbs.

I spent 2 months in intensive care, where I went into cardiac arrest and was baptized a few days later. A nun actually told my mom, "Don't expect miracles." A nun. I much prefer what my Nana said at the time. "She has good legs." Despite my Nana's words, growing up, I always tried to hide my legs. I didn't wear shorts in public until my late 20s. When I was 10 days old, I had my first muscle biopsy. The doctors didn't think I was going to live back then, so they didn't put too much into the aesthetics of my surgery.

So now, I have a 3-in scar right here. For years, I hated this scar. It felt like the telltale sign of my disability, which I could hide pretty well until I had to open a heavy door or get up from sitting on the ground. And up until last year, I did hide it as much as I could. People who knew me for years had no idea. I never talked about how I used to be scared I'd never be able to drive because it was hard to turn the steering wheel fast enough.

Or how, if I was running late for something, a lot of things, I was slowed down by fatigue and body pain. Instead, people only knew me for my love of birthdays, and glitter, and saying yay to everything. I avoided talking about my disability, which has such a huge impact on my life, for over 30 years. Part of how I manage my life is to look for joy. When you're operating with 33% strength, you really got to prioritize where your energy goes.

It's kind of become my survival strategy. I literally don't have energy to waste on unnecessary things that bring me down. When I walk 22,000 steps for the music festival I work for, and I'm sore and exhausted for a full week after, I think, "Yay! I just had over 30,000 people dancing and cheering." When I'm on a trip with friends and sad about missing whatever they do in the morning while I rest up, I think, "Yay! When they come back, they'll already know how to get everywhere."

I've been called an enthusiasm enthusiast. Being so open to joy and finding the positive that I'm known for the Lauren yay, where I celebrate even the little things. Life is too short to not have a daily yay. Finding mine has helped me build a certain kind of resilience. Only having enough energy to squeeze out a few drops of lemon juice, but still finding a way to make lemonade. So, I want us all to try something together to help you embrace your daily yay.

Now, help me out here. When we're having a bad day and we need a silver lining, we look for the Say it with me. Yay. When we're trying to plan something that is just falling apart, we try to find the yay. When life gives us lemons, we make yay. Yay. Here's a secret on behalf of many people with disabilities. Joy is found in perspective. Living with 33% strength lets me see and celebrate what lots of people take for granted, like having energy and strength and mobility.

I have to work harder at all of those things, but I always have joy because I create it for myself. And if you're lucky enough to have 100% of your strength, imagine what would happen if you shifted your perspective. Imagine how much happier you might be if you decided to look for joy. I spent over 25 years hiding this scar. And over 30 years trying to hide my disability. But now, standing here, putting it all out there in front of you, this has definitely been my biggest yay.

Transcript generated from the recording and lightly cleaned. Some names and wording may differ from the spoken speech.

Transcript

I'm half asleep on a Wednesday afternoon trying to nap in my University res room I cough a few times yep my bronchitis is still there before I lay down I text my friend zuel that I'm not going to make it to our public relations class jel and I have known each other since first year but this year third we really started getting close I told her I hate asking our Prof for an extension on the assignment we have due today even though I'm allowed to ask for a a and he approved but battling the bronchitis on top of having a muscle disability has been really

wiping me out a few minutes later my phone beeps with a text and I reached for it I can't seem him to sleep anyways it's duel Lauren isn't coming to class today she got an extension because of her muscle thing that's weird why is she texting me when I texted her something feels off but I'm tired I can't quite figure it out so I'll focus on it later a few minutes more and my phone beeps again this one makes me nervous because in the back of my mind I have an idea of what just happened I'm so sorry I meant to send that to our

other friend in class but he sent it to you by mistake I shouldn't have said that I'm sorry I'm going to try to nap maybe we can talk later I tried to a nap again but my mind is racing our other friend in class didn't know I have a muscle thing hardly anyone at school knows I had told juel a few times before because I trusted her but generally I never talk about it I'm always trying to cover up the fact that I would have a rare muscle disorder Central core disease where some of the mitochondria in my muscle cells is missing you might have

seen the meme or remember from science class that the mitochondria is the PowerHouse of the cell converting food into energy and energy into strength basically I have to work harder at a lot of things most people take for granted later came and I learned that jeel also told our friend I don't think Lauren will survive in the real world hearing those words I was the angriest I'd ever been I screamed while vent to my friends I cried about it that night but worst of all deep down I was worried she was right someone had finally spoken the fear that I'd had my whole life how

will I survive in the real world now I can't speak for all people with disabilities but I'd venture to say that a lot of us have either had that thought before or had that expectation placed on us by other people and of course we have we are living in a world that was not built for us accessibility barriers lack of compassion for things that we can't control internalized ableism from comparing our lives and ourselves to people without our health struggles we have a lot going on for over 30 years I tried to hide the disability I was born with close friends knew but I never

like to draw attention to things that were harder for me things like walking up a flight of stairs or opening a heavy door or getting up from sitting on the ground I didn't want to be known for having a disability even though it shapes every part of me a lot of that was because for the longest time I didn't even know how to talk about it I wasn't diagnosed until my early 20s and I was in my mid 20s when my muscle specialist Quantified it to me for the first time and I learned I have about 33% of the strength of the average person not

33% less strength just straight up 33% strength a wildly failing grade finally a sign to what felt like my ability to do literally anything driving home from my appointment after hearing that Not only was I surprised I was mad I had spent 26 years with no understanding of my own body and now I finally had an understanding that or an explanation that other people would be able to understand and it almost felt worse I thought what kind of Life can you have on 33% strength I thought back to ju's comment a few years earlier how will I survive in the real world it took me

a while to realize that I already was I had an exciting job working at one of the largest South Asian festivals in Canada I was in a loving long-term relationship I was enjoying my hobbies of musical theater and dance classes I had multiple groups of friends that actually hung out together in person as adults wild I also had my share of daily fatigue and body pain more often than I like I have to put off things I want to do that don't match up with my energy to actually do them I'll admit I've always wondered what it would be like to have 100% strength but

it came to the conclusion that if this was my life at 33% strength I would have either been a crime fighting superhero or a queen of the world at 100% strength and I'm just not sure I want that kind of responsibility it's easy to see the difficulties and downsides of our own situation to get so wrapped up in the negatives that we don't see any positives but the same day can be seen as good or bad depending on where we put our attention and that's where our resilience lies in the choices we make in taking whatever the world has given us and finding a way

to make it work for us now I may not ever be the girl who wants to go to the gym with you but my strongest muscle is positivity because I work that out regularly by finding my daily yay it's part gratitude practice part mindset and perspective shift basically identifying and consciously appreciating something good that happened that day did you see a super cute dog in your elevator did somebody pay you a compliment today did you finally try a bakery that you've been wanting to try you found a daily yay now toxic positivity is real and that's not what we want here we can't pretend that

things are fine when they're not or that we don't have the difficulties that we have I'm still sore whenever I have to walk a lot in a day even if I'm excited about whatever it is I'm doing I'm still sad when my friends are getting together and I'm missing out while I have to rest up even if they're going to come get me after but that's when I need the daily gay the most in the difficult times to find something that keeps me going something that tends to happen when people with disabilities accomplish something that we think is cool is we hear a lot of

she accomplished it despite her disability or he overcame his disability to do this thing but the reality is I've never accomplished anything despite my disability I've accomplished everything with it it's still there and it's not going anywhere maybe your difficult situation isn't going anywhere either but we can feel that things might be difficult while still finding the moments of joy to keep us going not despite our struggles but through them we can know that things are difficult and still Find the Joy because if we're always looking to some other time or place or thing for our happiness we'll never see it right where we are

Transcript generated from the recording and lightly cleaned. Some names and wording may differ from the spoken speech.