The Current - How an MS diagnosis taught Ardra Shepherd to live a joyful life

Episode Date: March 4, 2025

Ardra Shephard’s dreams of becoming an opera singer were derailed when she was diagnosed with multiple sclerosis at age 23. She’s written about losing the ability to sing and finding a new identity as a disability advocate in her memoir Fallosophy: My Trip Through Life with MS.

What does a mummified Egyptian child, the Parthenon marbles of Greece and an Irish giant all have in common? They are all stuff the British stole. Maybe. Join me, Mark Fennell, as I travel around the globe uncovering the shocking stories of how some, let's call them ill-gotten, artifacts made it to faraway institutions. Spoiler, it was probably the British. Don't miss a brand new season of Stuff the British Style. Watch it free on CBC Gem. This is a CBC Podcast. Hello, I'm Matt Galloway and this is The Current Podcast. Ardra Shepherd was 23 years old working in a cubicle job in Hamilton, Ontario. Her dream was

to become an opera singer. And then one day out of nowhere, her eye started to throb after several days, the pain still wasn't going away and her life was never the same. She was diagnosed with multiple sclerosis, something that happens to an estimated 12 Canadians every day, according to the MS Society. Ardra went on to become a writer, a podcaster and a TV host.

And she's written a memoir about her diagnosis and why she believes a difficult life does not have to be a joyless one. The book is called Philosophy, My Trip Through Life with MS. And Ardra Shepard joins us in studio. Good morning. Good morning, Matt. Thank you so much for having me. Congratulations on the book. Thank you. Tell me about the issue with your eye and how this all started.

What was going on? I had pain in my left eye, like a real throbbing pain. I first thought it was a hangover and later thought it was a migraine when it didn't go away. I had gone to a walking clinic and a doctor, that's what he said, migraine. It was maybe the worst headache in my life,

just localized to one eye. About a week after seeing the doctor at the walking clinic, I woke up with blurred vision in that eye. It felt like Vaseline had been smeared on my eye and I had reduced hearing in the opposite ear. So I walked to the emergency room at Hamilton's McMaster Hospital really just thinking I needed some antibiotics. I thought I was invincible. I did not think it could possibly be anything serious.

I went through a battery of tests and the next day I was sent to for a follow-up with a neurologist at the MS clinic. Even at that point, it didn't clue into me that I was at the MS clinic. I did not imagine anything serious could be wrong. The doctor told me I had a condition called optic neuritis, which is often associated with MS and a 50% chance that I would have MS. So that's kind of the MS origin story for me. You're 23 years old when this happens. What do you remember about walking out of the office?

Just feeling like my life had been ripped into before and after. I felt devastated, shocked. It was terrifying. Is that common to be diagnosed with MS at that age, at 23? You know, some people call multiple sclerosis Canada's disease. We have one of the highest incidences in the world per capita here. It is the most difficult, sorry, not difficult, I'm losing my words.

That's okay. I'll blame MS. Yeah, it is the most damaging illness that affects young people. So it is typically diagnosed between the ages of 20 and 40, though it can be diagnosed earlier and it can be diagnosed later. Disabling was the word I was looking for, the most common disabling illness of young people. One of the things, I mean, disabling is interesting because one of the things that you write about in the book

is that you didn't want to be disabled, and so that you decided you wouldn't be disabled in some ways, that this was not going to define you. I think it's an approach that is very common when people are first diagnosed, this feeling that we can control things, that we can mind over matter our illness somehow, and for a long time, I did feel like I had a disease.

It wasn't until I started having more visibly apparent symptoms that I started to feel like I had a disability. It was a very difficult identity to accept, and this narrative that we can control outcomes is something that's kind of popularized, I think. When we're first diagnosed, a lot of us are told, don't let this define you, you have to overcome this, you'll beat this, but it's not that simple. In the wake of walking out of that office and getting the diagnosis, one of the things that you do is you try to find... You realize you need to find sort of MS friends. Tell me a little bit about that. MS can be very lonely. And at 23, not knowing anybody else going through the same thing was very isolating. I found that finding somebody my own

age who had similar symptoms, but who was also navigating the same sort of life stage, you know, career, family, relationships, dating, do you want to get married, do you want to have babies, like all of these things. It was so important just to feel like there was somebody else who was navigating the same thing. It helped me feel like, oh, if this person's doing it, I can do it too. And MS is so variable symptom-wise, but also it's a progressive illness, so there are different stages. It wasn't helpful for me to be connected with somebody 20 years older and significantly more disabled than me at that time. I really needed peers that I could connect with.

I mean, the career is a big thing, right? I mean, I'd said you were working in a cubicle. You go from having a normal job, nine to five, to being like medically retired. Yeah, it took a few years for that to happen, just like stumbling my way through, but really what it felt like was a placeholder job. I was figuring stuff out. It wasn't where I wanted to be long-term,

no offense to that job, but the diagnosis for me felt like it closed off a lot of options really quickly, professionally, relationship wise. That turned out to not be true, but it took me a long time to figure that out and it took me a lot of intentional reinvention. I mean, this is something that specifically you talk about. People with disability benefits are expected to exist without really living. Yeah.

How do you go about threading that needle? I stayed in the job. I tried to fill the rest of my time with as many things that were positive and affirming for me until I could no longer physically do that job and I was medically retired. There's a lot of stigma that goes along with that. We live in a culture that values productivity, that values what we do, that's really tough. It can be, how much joy are you entitled to if you're receiving benefits is a question that I really had to wrestle with. It's not easy. You also just broadly have to wrestle with who you are, right, and what your identity

is. Absolutely. How do you do that? Very intentionally. I think when we do live in a culture that sort of identifies us by what we do for work, how we make money, I think it's cultivating as many other identities as possible. So recognizing what you contribute to your community, being a daughter, a friend, an aunt, a neighbor, an artist, a reader, a gardener, whatever these things are. I think MS can take so many things that the more identities you can cultivate, the less you're gonna be

rattled if you lose one or more of those things. What about singing? What did singing give you? Singing was saving my life for a long time. I really felt it brought me such joy and purpose and meaning, and I'm so grateful that I had that time in my life. One of the best lessons that I learned about not being able to sing anymore is that I would have these surprising

chapters afterwards. After losing a career in one way and then sort of working on singing, that filling up my life in another way, having that threatened, it felt like I didn't think I would know who I was without that. And so, having to lose that and being able to reinvent as a writer now and television host, that was such a gift for me because I feel like even the things that define me now and give me purpose now, they could also be gone at any moment and I have to just have faith that I've done this before, I can do it again. You wanted to be an opera singer.

I sure did. What was it about opera that you loved? Oh my gosh. I think that's also what helped me figure out that I wanted to be a writer was losing singing and figuring out what I loved about singing, right? So storytelling, being creative, theatrical center of attention, these kinds of things. And I realized that writing could tick a lot of those same boxes. Pete Slauson When you say, just, can you explain that for people?

Like when you say losing singing. Anna Winkler Yeah. Pete Slauson What... Anna Winkler Singing is super physical. Pete Slauson Sure it is. Anna Winkler Yeah. And so, when my body started to get weaker from the MS, I could no longer physically do it. I think the last time I tried to sing hymns in church on Christmas Eve was heartbreaking

because even that was really difficult. And singing is something that I trained at for years. It can be really heartbreaking to have achieved a certain level of expertise and then to lose that skill set. So... Pete You really miss it. Anna I do miss it, but I'm not bitter about it in any way because I'm grateful that I had that time in my life. I'm so grateful for that chapter, but I'm so grateful to discover that I have this whole other chapter

that I wouldn't have known about if I hadn't been kind of forced to figure out, okay, what else can I do? Is it easy to get to that place? I mean, reading the book and it's, there's, you know, parts of it that are really funny, there's parts of it that are really poignant, but I think a lot of people, if there was something that they loved that suddenly it was taken from them, they wouldn't have that sense of grace and that sense of gratitude that they found something else. They'd be annoyed and angry and worse

that this thing is gone, do you know what I mean? I've definitely had those moments. I've for sure had those freakouts and I think that's human and natural. And you have to go through that. You have to kind of grieve, but you can't live there. You have to get on with it. Why is it important that the book is funny?

That's a tough question to answer because I do bump up against this notion of the pressure that a lot of people with disabilities or chronic illness feel to be this kind of palatable patient. What do you mean? Plucky, optimistic, you know, there can feel this pressure to kind of make the people around us feel better, to feel like they don't have to worry about us, like we're okay. And I think humor can do that a lot of the time.

And so I don't know that it's that conscious for me that I'm not trying to do that. I really believe in saying, this is hard, this sucks, and I think humor is just a part of any good storytelling, really. Hi, I'm Steve Patterson, host of The Debaters, a comedy podcast where Canada's funniest comedians debate the world's silliest topics, like maple syrup versus honey. Your suggestion that syrup is only good on pancakes, that's so untrue. There are a million different things you can use maple syrup on.

Two. Give me two other things. Forget the million. Crepes? That's French for pancake, buddy. That's the bare knuckle round, everybody. That just got sticky. Listen to the debaters wherever you get your podcasts. One of the things that you turn to, and this comes up in the book, is what was known as

liberation therapy. Yeah. Which is, even the title of it was kind of a wild thing. Paula Zamboni was this doctor who when this was promised, and I know this from friends who live with MS, it turned people's heads. Yeah. Just remind people what it was and why there was this kind of explosion of interest in it.

So CCSVI, chronic cerebrospinal venous insufficiency. I can't believe I remember that accident. That's impressive. Yeah. So, what, 2011 maybe? This was an Italian doctor who had come up with this theory that blocked veins were causing iron deposits in the brain that were causing MS symptoms. A vanoplasty, similar to an angioplasty in the jugular veins was helping that blood flow. He had a wife who had MS. It was covered in mainstream media. The language

around this was so hopeful, so promising, so optimistic and exciting. It was very hard not to think that this was the answer. What did you think it would do for you? I had cautious optimism. I hoped that it would keep me from getting worse. And so you went to Poland and it didn't work for you? It didn't work, no. What did you take from that? I had tried.

I don't regret the decision. I think I would have always wondered. This was a low risk procedure, so the risk was financial and it was a cost my husband and I could afford to do. And my optimism was definitely tempered. I wasn't gutted that it didn't work. It was one thing in a series of things that haven't particularly worked. You also say though, and maybe this is what you're kind of hinting at, that MS is always lurking, waiting to, you use pretty pointed language that I can't say, F stuff up. Yeah.

I think that's one of the hardest things. The worst symptom of MS is fear because it is chronic and progressive. We don't know what the cure is. It tends to get worse and when you think you are at a place where you can accept what's going on, there is always this threat of new symptoms emerging. Something flaring up. It's really like the biggest lesson you have to learn with MS is to live with uncertainty. Fashion's a big thing for you. And you write about the importance of that,

particularly in terms of the context that we're talking about how we see people and how we see somebody who has a disability. Yeah, fashion gives us such an opportunity to present ourselves to the world, to express our identities. And it always had for me, I didn't really think about it. And when I started to use mobility aids, it was really

shocking to me how much that impacted how people perceived me. Strangers regularly ask me, you know, what's wrong with you? What happened to you? And I... What do you say when somebody says that? My answer has evolved because at first you're so shocked that anyone would ask you this, that, and also being raised to be polite and Canadian, I would answer this question and then feel really crappy about having given away like personal medical information to a stranger, the Uber driver, the shopper's drug market employee. And I realized that that's, it's not just one person or one rando.

It's this culture that we have where we have this narrative that people with disabilities are sad, tragic figures just to be pitied. And so it's really important for me to push back against that. And I think fashion is something that can speak for us before we, you know, it's like my mobility aids kind of speak for me before I have the chance to open my mouth and tell you who I am. So I think for me, dressing boldly or cheerfully or in a fashionable way speaks to a level of confidence

and whatever the opposite of tragedy is. What's the connection between that and the TV show that you hosted? Fashion Diss is a show on AMI-tv that I created and got to host, which is a makeover show, the first makeover show that we're aware of in the world actually that features a cast of disabled people. So, this was born of my frustration of not finding fashionable style role models in

traditional media as a young person with a disability. So, on the show, we take people with all kinds of different disabilities, give them makeovers, there's no sad hospital footage, there's no sad soundtrack, there's no even discussion of what disabilities or medical conditions these people have because it's none of our business, right? The question is, what is your barrier to accessing style because of your disability and how can we address that? And adaptive and inclusive design is an emerging field in fashion and beauty products, and so we were able to highlight a lot of that.

Do you feel, I mean, we talked earlier about what it was like to get this diagnosis, and the fear that a lot of people would have is, I am going to be somebody with a disability. Do you feel like you have been able, not to embrace that in some ways, but do you know what I mean? This is now a part of your identity

and that you can use this power for good. It's a tough question. If I could wake up tomorrow and not have MS, I absolutely would. But this is who you are now. It is, and I like who I am, I'm proud of. It is. And I like who I am. I'm proud of who I am and I embrace who I am. I see a lot of inequities that I would not have otherwise been aware of with the amount

of privilege that I have living in this country that I hope to influence through my platform and change. That's kind of awesome to be able to do that. You know what? It is. And I feel like even in a really simple way, anytime I get an email or a message or a DM from somebody who tells me I've helped them

embrace mobility aids even, just something that seems really small, that to me feels like one of the most important things that I have been able to do is just helping people feel comfortable with that part of their identity because I know how hard it was for me. So I know the problems that we have to solve are so much deeper than that, but I really feel like the way to advocate for change first is to have this pride of identity. And if we have people who are disabled but are not comfortable putting their hands up

and saying, I am disabled, then it's much harder to advocate for access and for rights and inclusion. Can I ask you, this is a tough thing. In the book you write about people with MS who are eligible for made medical assistance in dying. This has become in some ways part of our society, where people have access to that procedure, and it gives them agency, it gives them a sense of power

and ownership and control over their lives. How do you think about that? I was frankly really relieved when I heard that multiple sclerosis was approved as one of the conditions that is eligible for a medically assisted death, meaning in Canada, you can apply for that and qualify for it without death being imminent. That was a relief to me initially. A relief. Initially, yeah. But contemplating it further, seeing people go through that process and observing a lot of the failures in our culture, in our society to make disabled lives more worthwhile

in the meantime has made me really uncomfortable. So, I don't advocate for any unnecessary suffering and pain, but there are people who are opting for, made for reasons beyond undue suffering and pain. But there are people who are opting for made for reasons beyond undue suffering and pain. And we've spoken to people who, because of lack of disability payments, because life is unaffordable in some ways, that that is for them something that they would consider. Because disability support payments would be so low, for example. Lack of accessible housing is a big one also. In a more subjective way, even these feelings of being a burden, I'm also really uncomfortable

with the language around death with dignity. Who decides what's dignified? When we hear a lot of these descriptions of what it means to live a dignified life. There are many elements of that that I'm already impacted by. I need help. I have bladder and bowel symptoms. Who decides that that makes my life undignified and that that is, you know, the dividing line. I think we need to redefine dignity. I think we need to think much more about independence as something neutral and not a virtue. Agency is one thing, but we don't value interdependence in this culture quite as much. And we would do well to question how we are failing disabled people in this country

and the things that we could do to make their lives more comfortable on top of providing this access to me. You talked about living, just finally, you talked about living like now in this space right now. A lot of this book is about like life, like living glamorously and dramatically and with vigor and joy and excitement and electricity. How do you think of your future?

How do you think of what the road in front of you looks like? I mean, I try not to. At all? No. Of course, that's really hard not to do, but I think these are things we all struggle with right now. There's so much uncertainty. And so, if I can stay grounded in the present and the near present, I feel like it's really important to also have things to look forward to. So, I don't

think five years ahead, but I do think of like, when's my next trip and when's my next glass of wine? Pete Slauson Those are things to look forward to. For sure. Absolutely. It's a real pleasure to talk to you. Congratulations on the book and thank you very much. Thank you so much for having me.

It's been great. Thank you. Harder Shepherd's new book is Philosophy, My Trip Through Life with MS. Her blog and podcast are called Tripping On Air. For more CBC podcasts, go to cbc.ca slash podcasts.