Author Archive

Why It’s Important To Vote

Written by on October 13th, 2015 –

It’s important to vote because it’s important to have your voice heard.

No.

It’s ESSENTIAL to have your voice heard.

JuanAs people living with MS, or that have loved ones with MS, we are a marginalized community.
Our society, our cities, our transit systems, the economy and job markets and our educational opportunities are not designed for people with MS.

And yet we are living valid and legitimate lives and we deserve to have equal access to services, goods and full participation in society.

And how does that happen?

A change to the system. A change in the ways that elected officials and policy makers make decisions. A change in mindset. To a mindset that doesn’t think of accommodations or accessibility needs as after thoughts, or upgrades to systems or great ideas. But a mindset where the great idea is one that is right-off-the-bat accessible to everyone.

And that can happen in communities. That can happen at the micro-level. But often times, these ideaSLM1s require the support, resources and funds of governments.

So on October 19th (or in the advanced polls), please make sure you vote. And tell your friends to vote. Vote for yourselves. Vote for your friends and families. Vote for the community. Vote for those that can’t. But most importantly…

Vote to #endMS. Vote to increase support for caregivers. Vote for changes to the system so that people with MS are able to live independent lives, fully and actively participate in our society, and vote for a Canada where we are committed to caring for those that are disadvantaged and finding ways to get rid of those disadvantages.

Learn how to vote, where to vote and when you can vote by visiting the Elections Canada website.

Sharing Your Story

Written by on September 8th, 2015 – 1 Comment

As long as I can remember I have been a storyteller. I remember in elementary school that I loved anytime we were allowed to write stories. One of my favourite classes in high school was Writer’s Craft. Storytelling is why I got interested in theatre and am now majoring in Drama Studies and even Sociology because I believe that through understanding each other’s stories, we can learn more about our society . And while my love for stories started in fiction, I’ve learned the power of hearing an individual’s personal story through non-fiction, microsociology and understanding the importance of diversity.

As well, I’ve learned through telling my own story. As a storyteller, I’ve been able to work through my diagnosis, treatment and continuous battles of having MS by knowing my story. And by shaping my narrative. I could have easily turned my life into one of self-pity when I was diagnosed. But I didn’t think that was a fun story. So I turned my diagnosis into a story of empowerment, advocacy and community.

Getting involved with the MS Society has given me a number of occasions to share my story of my diagnosis besides contributing to this blog.


The #MSMyStory video series was an amazing opportunity where I got to contribute to a youth-centric campaign where young people, like myself, that live with MS and have family that live with MS talk about the ups and downs of MS. It was incredible being part of this because I got to hear the stories of so many other young people. I got to see that I am not alone in this journey. While everybody’s MS is different, the narratives can be very similar.

I had the incredible opportunity to do an interview, complètement en français, with Radio-Canada. I’ve been learning French for sometime now and this was a personal point of pride for myself. While I didn’t have perfect French, I felt confident enough in my French, and comfortable enough sharing my story that it came easy to speak on air about living with MS. Click the logo above to listen to the story – click on “Vivre avec la sclérose en plaques” to hear my interview and that of Yves Savoie, president and CEO of the MS Society.

The coolest way I’ve been able to share my story (and really the coolest thing I’ve ever done) was being a speaker at TEDxYorkU this year! I’ve a huge fan of TEDTalks and being on the TED stage, speaking about living with MS and learning from vulnerability was incredible!

While sharing my story has helped me work through all the feelings and experiences I’ve had associated with living with MS, the most amazing part has been hearing the feedback, having people share their own stories and having people saying that they’re taking something away from my storytelling.

Storytelling creates a community. And having a community can making living with MS a little easier. Now that community can be a small group of friends and family, or the entire world.

#OneWord365 Explore… Health

Written by on January 6th, 2015 –

1509906_684132398276302_843275970_nFor the second year, I’ve decided to participate in the #OneWord365 Challenge instead of making a New Year’s Resolution. This word is going to be used to guide my actions in the year, and allow me to have somewhat of a focus on what I do in my life. 2015’s word is “Explore”.

This blogpost is going to be focusing on how I’m going to be exploring different approaches to health. I’ve written before about my struggle with health, weight and physical activity.

The reason I’m heading in to 2015  with a health focus is that I ended 2015 with a bit of a health scare. After two years of being on one treatment for my MS, my neurologist suggested I switch to a different one, because although I was clinically okay, the little bugger known as MS decided to keep developing inside my body. So this new treatment was supposed to help with that. (more…)

Why I Don’t Need Your Pity

Written by on September 16th, 2014 – 2 Comments

Anybody that knows me, also knows that I am a HUGE fan of TEDTalks. If you don’t know what TED is, it’s an international organization dedicated to spreading ideas and innovation around Technology, Education and Design (see what they did there?).

One of favourite recent talks is one by comedian and disability advocate Stella Young. In her talk, Stella talks about experiences she’s had in her life that have led her to see that in today’s society, disability is being objectified as a form of what she calls “inspiration porn”.
http://www.youtube.com/watch?v=SxrS7-I_sMQ (more…)

How Will They Know What I Need?: Disability Services in Post Secondary

Written by on September 11th, 2014 – 5 Comments

Being in post-secondary can be a very stressful time – so trying to figure out to manoeuver one’s MS diagnosis at the same time can make it even more difficult, especially if a flare-up hits at an inopportune time.

Luckily there are many services available to post-secondary students available at universities but at times it can be difficult to try to figure out where and how to get said services.

On September 20th, the Multiple Sclerosis Society is hosting an event titled “How will they know what I need? Accessing disability services post-secondary” at York University. Students with MS and their families are invited to participate as different services are talked about by staff.

I’ll also be speaking at it briefly about my experience in post-secondary with disability services and navigating the system.

I invite you all to this orientation and lunch. I’d love to see you all there.

Register for the event here: http://mssociety.ca/toronto/events.htm#postdisablility

The Never Ending Battle With MS, My Weight and My Laziness

Written by on June 24th, 2014 – 3 Comments

I bIMG_0051ought a new shirt earlier this month. It says “I’m not lazy – I’m physically conservative.” I tend to be on the lazier side – y’know little things like not wanting to get out of bed to answer a phone, stretching as far off my couch to reach my computer without actually getting up, frequently choosing the escalator over stairs.

But I’ve always been active – when I was younger I was in swimming lessons, and my mom would try to get me involved in basketball and soccer (that didn’t stick.) For 8 years I was enrolled in Karate, and that gave me a chance to exercise and get off my couch. I loved it, and even though it’s taken a back seat to my academics and volunteer work, I 100% intend on returning to it.

And my mom always made sure I was a healthy eater – lots of fresh fruit and veggies, homecooked meals as often as possible, limits on the amount of cookies and pop I could have.

But despite that, I’ve never been the healthiest person. I probably like McDonald’s a little too much, and may have some self control issues when a pizza or chocolate is placed in front of me.

However that all changed when I was diagnosed with Multiple Sclerosis. I realized that I needed to become more aware of my body, my health and really take control of it. This realization was by no means an instant one. I was diagnosed in July 2012, but it wasn’t until May 2013 that I realized how important it was.

Living on campus, and not having my mom looking over my shoulder led to me not being physically active… at all, and making poor choices about my diet. This led to me getting completely out of shape, and gaining a lot of weight.

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My First MS Walk

Written by on May 6th, 2014 – 2 Comments

On Sunday May 4 2014, I had the incredible opportunity to participate in my first-ever MS Walk at Downsview Park in Toronto. Now while I was diagnosed two years ago, I didn’t get a chance to participate last year – partly due to the fact that I was still trying to come to terms with having multiple sclerosis. I wasn’t really ready to do that.

But this year, I’m feeling a lot better about the whole thing. Having started writing for this blog, being featured in the Spring issue of MS Canada and being more educated by taking my Introduction to Disability Studies course in school, I jumped at the chance to participate! (more…)

Finding Humour In MS: Reflections On “Carry A Big Stick” by Tim Ferguson

Written by on March 4th, 2014 – 2 Comments

For anybody outside of Australia (including myself), you’ve probably never heard of Tim Ferguson. According to his website, “Tim Ferguson is a widely acclaimed comedian, writer and producer. He’s toured the world performing stand-up and musical comedy, co-writing dozens of live stage comedy shows and light entertainment programmes.”

Most famous for his involvement with the Australian comedy super-troupe, the Doug Anthony All Stars, that went on to experience superstardom in the sketch and musical comedy world. Be forewarned, the songs the Doug Anthony All Stars are famous for are not exactly appropriate for children or the lighthearted.

So why am I writing about this Australian comedy legend? Because recently I read his memoir “Carry A Big Stick – Laughter & MS” and it’s truly opened my eyes.

Truth be told, I didn’t understand half of it, because I’m not Australian so references to Australian geography, stars and pop culture was lost on me. Nonetheless, it was very cool to learn about his journey from a busker on the streets to fame.

However the most interesting part of his book, for me, is where he talks openly and frankly about living with multiple sclerosis.

Tim chronicles his journey from the beginnings where he started to experience symptoms such as numbness, loss of balance, chronic fatigue, etc that he chalked up to overworking himself. “I could barely stand straight. I couldn’t feel the hands I was shaking.”

He takes us through his diagnosis. “It was as if everything had slowed, as though I was watching someone else’s car crash.”

Ferguson walks us through his decision-making process to hide it from certain people, and to come out with to others. My favourite part is where he goes on a long explanation of what multiple sclerosis is complete with comparisons to “a bonkbuddy who gets emotional” and “a Swedish backpacker.”

(more…)

The Little Victories

Written by on February 4th, 2014 – 1 Comment

As I’ve described before, living with MS is a series of ups and downs. Days you wake up without feeling in your limbs are among your worst.

However, the day you wake up, and you realize it’s been a year since your last flare-up, and that you’re in the best mental and physical state you’ve ever been in… you feel like you’re on top of the world.

I had the pleasure of experiencing that last December, and honestly, it made me feel amazing to know I had gone a year without any issues.

However, although that was a huge victory for me, I’ve been through many victories while dealing with my MS. Some small. Some big. But nonetheless, they’ve been victories.

When my small flare-ups—y’know limbs going numb for 10-15 minutes—stopped happening because I followed my doctor’s advice of daily care and management.

For me, the day I stopped being nervous about my daily injections and it became as routine as washing my hands.

The day I realized I knew enough about my multiple sclerosis to recognize the difference between my leg falling asleep and a flare-up.

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The Little Reminders

Written by on December 17th, 2013 –

I am very open about having multiple sclerosis and about living with a personal disability. During the campus tours I do through my job, I openly talk about being registered as a student with disability through my school’s disability office. When travelling, I have no qualms with talking about the set of needles I have to take with me.

But I’ve been pretty lucky.

Yeah, I’ve had some big relapses—vertigo, loss of appetite, nausea, numbness, weakened vision… the whole nine yards—but for the year and a half since I’ve been diagnosed, there’s only been two weeks where I’ve really had to face my multiple sclerosis head on. The majority of time, I’m a perfectly able person with disability.

There have been some carryovers from my relapses: my balance is a little off, and I notice more of a stutter especially as I get more tired. But besides that, nothing.

I have daily shots I have to take, which can cause a big struggle. The days when I have no symptoms, those shots serve as a reminder that I am living with this. Which is really hard. It’s a reminder of all the uncertainties I live with.

What if today is the day I have another relapse? What if in between my meetings that day, I lose my sense of balance? What if halfway through class, my hand goes numb and I can’t write any notes?

A couple weeks ago, I gave myself my morning shot, and for the first time since I started taking this medication—about a year now—I experienced shortness of breath and anxiety. I’ve read that these are common side effects, but for me, the medicine hasn’t caused any side effects for me besides soreness at the injection shots.

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