Emma out and about.

4 Things People Don't Understand About My Life 'Multi-Tasking' With Multiple Sclerosis

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When I do something, I do it properly; work, charities, holidays and hobbies all get taken to the max. I never expected that this personality trait would carry through into living with multiple sclerosis — but here I am, multi-tasking disabilities.

One disabling condition is just too boring for me; I am really going for it with mobility problems, sight loss, memory issues, pain, exhaustion, depression and a whole lot more. It’s a good thing I have loads of experience with multi-tasking, but “average” people don’t seem able to understand that I might still want to make the most of my life.

Here are some of the questions I’ve been asked recently, and how I would have responded if I’d thought quick enough on my feet (wheels.)

1. Which disability is your “main issue?”

Well it depends what day it is, or what hour. It depends on what I’m doing and how I’m feeling emotionally, what else I’ve done recently and how many spoons of energy I have left. I can’t see and walk and talk at the same time; that usually sees me collapsed on the floor. But if I’m in my wheelchair, I can have a pretty decent conversation around town with friends, unless the sun is too bright or it’s too dark; then you’ll see me fall silent.

My main issue however is not the disabilities; it’s the fact that society isn’t accessible and doesn’t understand that disabled people are as entitled to full and active lives as anyone else.

2. Why do you want to go to a movie if you can’t see it?

I love going out with my friends and family. I like losing myself in another world at the movies. I like to join in “normal” activities and feel like I did before MS took a lot of them away. I enjoy listening to the actors and their conversations and getting involved in the plots. I love audio description on films; they bring the best of movies and books into one place. I have discovered a newfound joy in the music of movies; soundtracks are not appreciated enough.

But wait a minute, why shouldn’t I enjoy going to movies? It’s my life, and if I want to go I should be able to without anyone commenting or judging or questioning me. No one does that to “average” people.

3. Why do you go out in your wheelchair if you can’t see very well?

My sight is a tiny issue when getting around compared to the state of pavements, road crossings, public transportation and building accessibility. I have a tunnel of blurred sight and I’ve learned how to use it pretty well; I have no peripheral vision so that can be a challenge, but if everyone on the street took care where they were going, didn’t stare at their phones, and had compassion for wheelchair users, I could cope OK. I prefer to be with someone when I’m out, and don’t leave the house on my own very much — perhaps once a month — but sometimes needs must, and with the help of strangers I’ve come home safe and sound every time.

Why do I go out? Don’t you? I don’t have agoraphobia; I’m an extrovert and I live with depression, which is made much worse when I’m on my own for too long. That’s why I go out, because staying on my own puts my mental health at risk. Going out might be difficult and exhausting, but it makes me feel better in my own head.

4. When are you going to accept you might need to reduce your aspirations?

When I’m dead. I’m never going to stop aspiring, planning or trying to do things or go places. I’m always going to want to have fun and do exciting or challenging things. I’m a mum to an 11-year-old and I want to be the best mum I can be for as long as possible. I’m a wife, and it’s hard enough for my husband to pick up all the things I can’t do without having great experiences.

I’m no different than anyone else; I want to live my life. No matter how bad things get from a health perspective, I’ll be challenging myself, and no one is going to stop me because they don’t think I should.

Follow this journey on LLM Calling.

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How My Multiple Sclerosis Taught Me to Let Go of Negativity

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I consider myself to be a positive person. I believe I am open, respectful, honest and generous. I live day to day achieving small tasks, completing chores, tending to my children’s happy life and my family’s love. I share my blessings with my neighbors and my community. I smile all day because I find it to be the best medicine for my multiple sclerosis (MS).

But occasionally, I feel uncomfortable. I feel overshadowed by a cynical strong force that is powerful and makes me look at life as a pessimistic endeavor. I don’t know if it is cyclical, symptomatic, random, contagious or has to do with the weather, but when it takes a hold of me, gloom will go to the destructive files in my subconscious.

When depression starts, it’s hard to stop it. It’s a tough adversary, but it’s not impossible to beat. I just have to recognize it, confront it and make a decision: Do I want to continue down this path? Or do I bring it to a standstill? I recently discovered that when my MS symptoms will act up, they remind me bliss is worth fighting for.

The other day I received a guest in my home. She’s a person I love and cherish. After we spoke of the usual pleasantries, she began to recall some unpleasant memories. She relived humiliating and painful moments that people around her provided. I felt empathy, I felt sad for her and then I got upset because she had to go through that.

I began to side with her and comfort her, but in doing so, I had opened my own archives, and I began to remember my share of undesirable moments, too. I told her everyone had a bully in their life — disrespectful people who try to impose their beliefs and empty people who felt better when they brought others down.

As I described my bully, I began to notice a familiar muscle spasm in my upper lip. My MS symptoms were activated by my negative state of mind. I put my hand over my lip and ran to the bathroom to look in the mirror. The skin under my nose made a profound dimple and continued pulsating very slowly. I also looked into my shocked eyes because I had received the message: My body was telling me to quit it. I breathed deeply and in my reflection, I said goodbye to negativity. The symptom stopped after a couple of minutes, and I felt empowered. I came back to the table, I offered some cookies and suggested we change the subject to something more lively. We had a very nice evening.

It’s very important to blow off steam, to liberate malicious energy from our bodies and to share and heal. But just as important as letting go, we also need to find our way back to happiness and fight to retain it for as long as possible. Again, I conclude that my disease is not my enemy. It is my teacher and partner in life.

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5 Secrets About My Life With Multiple Sclerosis

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I’m not a big fan of secrets. There’s little I keep to myself when I’m truly among friends. Seriously, there’s probably not much my tiny inner circle doesn’t know about me. I tell them the most intimate details of my numerous doctor appointments. I tell them what I’m eating, even though no one really cares about that or wants to see a picture. These friends are the ones who get my emergency room selfies. Hey, many of them have even been in these selfies with me. I love my friends, big time. So when I saw a prompt to write about the secrets my friends don’t know about my condition, I was intrigued.

The topic burned in the back of my mind. Since I had no secrets, what was there to write about? I guess I was being pushed to realize that, shockingly, I do keep some things to myself. I don’t like this. I spend a lot of time advocating for the chronically ill, and secrets aren’t the way to help myself or anyone else. Well, the secrets want out.

1. I have malignant multiple sclerosis. It is the rarest type. If you Google it, the most you will find are a few sentences, and they aren’t uplifting ones. If you Google MS in general, you will often see a sentence, one lone sentence, about how MS is not fatal, except in the rarest of cases. I am one of those rare cases. This frustrates me beyond belief as an advocate. There isn’t enough research about my type of MS, and there is little I can do about it. It is a factor in my depression.

2. I had clinical depression before MS or any other health issue came about. All my friends knew this and probably think I got it under control. I never did. My family thinks I did, too. It’s just now, a little over two years after my diagnosis, that I am getting the help I need for my depression. The help I received many years ago after my suicide attempts was beneficial. It got me through a tough time and helped me want to keep living, but with the depression that goes along with MS, I may need a lot more help.

3. I cry. A lot. About happy things. About sad things. About things in between happy and sad. I like to act like I’m not a crier, but I am. I wasn’t before MS. I recently cried for a good 15 minutes over a tree branch in the road. Doctors have told me brain lesions can do that.

4. I have bladder issues that medication doesn’t correct. Except for a few friends, no one knows this. With the ones who do know, I act like I’m not embarrassed about wetting myself or having to go to the bathroom a gazillion times a day. But I am sometimes. And then I’m embarrassed about being embarrassed.

5. It appears that the rapid progression of my disease is slowing me down on the outside, but on the inside it’s made me fierce. More fierce than I’ve ever been. There are times I don’t seem to know this, and other times when it is a source of tremendous pride for me. Both terrify me equally. I’m scared either way, and I don’t like showing it.

So there you go. I thought I lived a life with no secrets. Life is certainly easier without them. Everything is out in the open. Less complication for my busy mind. Maybe I’m free now. Maybe.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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To the People Who Ask 'What's Wrong With You?'

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I’ve just returned from the most fantastic vacay to Spain and France with The Banker (my husband) and Optimus Prime, my sexy new sidekick and cool, convertible rollator (walker).

This trip was my first time traveling with Optimus, and all three of us were nervous.

The Banker: “Will it be hard to get in and out of cabs, train stations and airports? Will we be holding up traffic and pissing people off?”

Optimus: “Will I get thrown around by surly baggage handlers? Will I be damaged in transit, leaving my new BFF stranded and without assistance?”

Me: “What will people say? How will they treat me differently with my new entourage?”

These were among our excessively polite Canadian concerns. But in the end, we had no reason to fret. The Banker had practiced packing and converting Optimus and could do it in a slick 90 seconds. Optimus returned to Canada un-traumatized, with the exception of one inevitable Parisian dog merde encounter. And surprisingly, nobody said anything to me about my obvious accessory. Well, that’s not entirely true. I really did get some compliments on my awesome boots. I’m telling you, they are beautiful boots.

Ardra with her rollator, 'Optimus Prime.'
Ardra with her rollator, ‘Optimus Prime.’

Optimus Prime is still a bit shy about being photographed. (Not pictured: my bad ass boots)

I was grateful to ease into things with Optimus without having to respond to any raised eyebrows. We were out and about every day, but my differences never came up in casual conversation. This was unexpected, because it’s not the same here in “polite” Canada. Sometimes it takes leaving our homes and experiencing a different culture to see things a little more clearly.

On this side of the ocean, I’ve been fielding questions about my deal ever since I started using a cane a few years ago, and it’s only ramped up since I began using a rollator. What’s wrong with your leg? What did you do? What happened? I get it. You’re not used to seeing people like me: young but using the tools of the old. For whatever reason, we feel we need to comment or ask questions. It’s like our collective discomfort around disability forces us to fill the air, to address the elephant in the room, or on the street for that matter. I end up feeling like I have to reveal personal information, explain myself. I end up feeling like I’m the elephant.

Why do we think we can make these comments to total strangers? Is it a general feeling of superiority over persons with disabilities? What do we really want to know? Maybe these comments seem benign; people who are just trying to make conversation. I don’t believe everyone who talks to me is a nosy jerk, but these interactions are not OK. These questions all boil down to “What’s wrong with you.”

“What’s wrong with you?” is not an acceptable ice breaker.

After two whole weeks of not being put on the spot with questions about my body, things changed as soon as we passed customs at Pearson when an elderly man gestured to my rollator and said, “I’m just glad I don’t need one of those yet.” What’s frustrating is, I hear stuff like this all the time.

I used to politely answer, putting the comfort of others ahead of my own, and feeling like I had no ownership over my personal health status. I felt like I owed everyone an explanation and even an apology, because it often feels like my clumsy presence is an inconvenience. I would insist that “It’s not that bad,” doing my best to make others feel comfortable in the awkward situation they’d unwittingly created. A situation where everyone you encounter first sees you and labels you with something negative, with a defect, and then actually says it out loud. Imagine your most personal struggle in life. Now, imagine that everyone you meet asks you to tell them what that is before they even ask your name. What would you say?

I don’t want to do that anymore. I’ve been experimenting with alternate answers, and lately when someone would ask “What happened?” I would shrug it off saying “Genetics.” But that seemed like a cruel response when I was asked and found my mother standing next to me. So yesterday, when a curious stranger gave me the up-down before declaring, “You’re too young to be using one of those,” Fantasy-Me boldly said, “You’re too old to be asking rude questions.” But Reality-Me just didn’t answer. When he didn’t get the hint and kept questioning, I awkwardly walked away, muttering something about croissants. I still felt ill at ease, but I also felt good about having protected my privacy. He didn’t deserve this kind of intel, and by my refusal to give it, he could only label me as “bitch” and not “MS patient.” Turns out I’m both, but it’s up to me to decide if you get to know that.

Later when I obsessed over what I should have said that would have left us both feeling better, it suddenly came to me. The answer that I’ve been searching for is so simple I can hardly believe it’s never occurred to me before:

“That’s a little personal; I’d rather not say.”

I can say it in my nice voice, with a smile, using the manners I was raised with and everyone walks (or rolls) away feeling good. It’s so easy.

Maybe that excessively polite reputation we Canadians have is not an accurate stereotype. Maybe we need to take an example from our Euro friends. Drink more wine, eat more cheese, and ask fewer questions.

Follow this journey on Tripping On Air.

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Elon Musk Dreams of Going to Mars. I Dream of Feeling Normal.

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I couldn’t help but chuckle when I first read about Elon Musk’s plan to colonize the planet Mars.

Not because I don’t think it’s realistic. I’m sure if you took a national poll in 1960, let alone 1968, on whether you thought man walking on the moon was possible, most would have disagreed. But on July 21, 1969, it happened, so I keep an open mind to the possibility of Mars being colonized one day.

What caused my amusement was the price tag: Musk estimates a trip to Mars will cost about $10 billion per person. Yes, that’s billion.

My first reaction was — for that amount of money — couldn’t I just buy a planet?

However, by the time I had finished reading about Musk’s Mars ambitions, I realized he was selling more than just a trip to Mars, he was selling an experience.

It’s the big dream of being free from problems of your current life — a trip to where no person has ever been. It’s chance to start over — to be a new you — in the confines of a new world.

It can be inspiring to hear someone so enthusiastically detail their dream, and it got me thinking about my own “out there” experience.

But for me, I don’t dream of a trip to Mars. I’m just looking for a normal experience.

Although I’m content with my life on the planet Earth, I oh so miss just feeling normal. So allow me to follow Musk’s lead and do some audacious dreaming of my own:

I’d love to go one whole day where …

• I didn’t feel tired.

• I wasn’t in regular pain.

• I could stand and play with my children without my leg feeling like it was on fire.

• I could fall asleep easily … and feel rested in the morning.

• My vision didn’t routinely get blurry.

• My children didn’t have to watch me grimace as I got another shooting pain in my head/arms/hands/legs/feet.

• My wife didn’t have to massage my achy legs and feet at night.

• I had no bouts with vertigo.

• I didn’t struggle to find simple words or remember names of people, places and things.

• I felt no tingling, spasms or tremors.

My legs didn’t give out on me.

• I took no medicine. Not one shot or pill. None!

So, really, my vision and Musk’s vision aren’t that different.

We are both looking towards the future with a bold and optimistic lens. We both envision a new reality. His price tag is around $10 billion, and I suspect the cure for multiple sclerosis (MS) could cost at least that much.

The good news is, with mine, no intergalactic travel is required.

Follow this journey on A Life Less Traveled.

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Why Multiple Sclerosis Has Made Me a Better Human Being

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Yes, you might be wondering how in the world has having a terrible disease such as multiple sclerosis changed my life in a good way at all, but listen closely to my story as I explain myself. MS has made a better human being.

It all started back when I was in my second year of college, taking a music business administration class at Durham College in Oshawa. My plan going into that course was that I would be an artist’s manager, or something along those lines, but I had no idea what was really in my future. My future changed in an instant, and that was due to me being rushed to the hospital on December 5 or 6, 2014. (My memory is hazy.)

See, I was on my last day of my first semester of my second year and I was ready to have an awesome Christmas break with my friends and family. Little did I know that wasn’t going to be the case. I woke up the morning after the last day of the semester and had to use the bathroom, when all of a sudden I couldn’t feel my entire right side of my body, even my face. I was completely paralyzed on my right side from my face to my foot.

I immediately woke up my boyfriend and tried explaining what was going on with me, but he was tired of course and thought my leg was just asleep. When he realized I couldn’t even walk to the bathroom, he carried me and I was then sick. It was all happening way too fast. My roommate then called the ambulance and I was rushed into the hospital, and guess what? I was there the entire Christmas break. (Except when I got out for a few days for Christmas, but I’ll explain that later.)

I was in the stroke part of the hospital the whole time I was there because that’s what they thought happened to me – we all thought I had a stroke. But the reality was MS. Of course no one knew the real reason at the time. They did MRIs and a spinal tap on me and finally diagnosed me with multiple sclerosis. I remember being told I had the disease, but I didn’t even know what it was so the doctor had to explain it to me.

I was then horrified, crying, freaking out – I felt completely hopeless. I thought, I’m a decent human being, why is this happening to me? I was really depressed for a bit, and even more upset that I was on steroids, tons of pills and stomach injections every morning, not to mention re-learning how to use the entire right side of my body. That means I was in a wheelchair, I couldn’t walk and I could barely speak, so I had to do speech therapy and physiotherapy every week.

I’m 22 years old now, and at the time I was only 20 years old. This had me thinking that I was too young to go through something like this, and I started questioning everything I ever believed in. But then something hit me. I broke through my depression, overcame my struggles and was happy again – and I’m going to tell you why.

I became happy because I started questioning little things. Why is this happening to me? Maybe a higher power is trying to teach me something, maybe I need to be more thankful and feel lucky to even be alive. I could have died, but I didn’t. And do you want to know why?

It’s because all of us are stronger than we perceive ourselves to be. I never thought I would go through such a drastic change in my life, let alone build the physical strength and the emotional/spiritual strength to carry on in my life. Instead of feeling sorry for myself, I started to look at things in a different light. I’m not saying that battles with disease, depression, anxiety, etc. are easy – they are extremely difficult to go through – but this is what I did to get through it all.

I got to get out for a few days for Christmas to see my family and we went to see Christmas lights. When we arrived to all these huge houses, there was a sign that read, “$1 hot chocolate for MS.” They were raising money for my disease. It was beautiful. I got out of my mom’s boyfriend’s truck and we went over and gave them $20. I cried tears of pain but also of irony, of synchronicity. I was meant to be there, in that moment, exactly how it happened.

I saw how other people had it hard in the hospital and outside of it, too, and I knew I was put here on this Earth to help others be inspired to be strong and overcome any obstacles thrown their way. I know for a fact that overcoming my disease physically was (mostly) a spiritual awakening into a better perspective and a better life.

I then eventually moved to Toronto, got a job to pay for my rent and started to be in a collective that writes about music. If I didn’t do that, I wouldn’t be where I am now. The pain and experiences I’ve faced have made me take my writing seriously (I’ve always loved writing since elementary school) and to help others be inspired. I did an awareness video interview on MS that got thousands of views and inspired so many others. I have recently had my story published on MultipleSclerosis.net, and I even wrote a book called “Growing into My Soul” which is a collection of my thoughts and poetry, some of which talk about MS.

I’m not saying everyone with MS will have the same experience as me – that’s actually impossible. But what I’m saying is to trust your experiences, learn from them and grow strong from them. We are all stronger than we think and we can withstand even the toughest of storms in our lives. I’m not saying my disease is cured, or that I no longer deal with anxiety or depression, but I did look at things in a new light and it does help more than I ever thought it would. We are each on our own journey; no one’s is going to be the same. So just try to do the best you can with what you have and turn your pain into something beautiful, something to look back on. We as people constantly evolve, so don’t worry: where you are right now will be completely different weeks, months or even years from now. Striving to be better than you were yesterday is all that matters, and if you focus on yourself, you will be much happier.

I know I have, and I love who I am today because of it. I’m proud of my struggles because they have turned me into a better person.

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