FALL-OSOPHY, My Trip through Life with MS - Our interview with author/MS advocate, Ardra Shephard

Summary

The MS Gym Podcast – Episode Summary

Episode: FALL-OSOPHY: My Trip through Life with MS – Interview with Ardra Shephard
Hosts: Brooke Slick & Jodi Feltham
Guest: Ardra Shephard (author, blogger, MS advocate)
Date: May 13, 2025

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Episode Overview

This episode features an in-depth, honest, and often humorous conversation with Ardra Shephard, renowned MS advocate, blogger (Tripping on Air), and author of the memoir FALLOSOPHY: My Trip Through Life with MS. Hosts Brooke and Jodi delve into Ardra’s new book, exploring her journey with MS, the emotional realities of chronic illness, and her perspectives on disability, relationships, and self-worth. The discussion is unflinchingly real, supportive, and full of relatable moments for those with MS and anyone seeking to better understand life with a chronic condition.

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Key Discussion Points & Insights

1. Unveiling the Real Ardra

• Expanded Story Beyond the Blog ([02:10])

  • Ardra explains the depth in her book far exceeds what she’s ever shared online. While her blog “Tripping on Air” started in 2015, her MS journey began in 2001, and the memoir fills in many personal gaps.
  • “The blog is only a fraction of what’s covered in the book.” – Ardra ([02:10])

• A 3D Perspective ([02:52])

  • The memoir offers previously-unshared stories, making Ardra “feel more 3D” (Jodi).
  • Book resonates with MS veterans and newbies, evoking both comfort and recognition.

2. A Book for the MS Community and Beyond

• Goal of the Book ([05:16])

  • Ardra’s primary aim was to create the kind of honest, unsugarcoated narrative she sought at diagnosis—something gritty but hopeful.
  • “First and foremost, I wanted to create something for the MS community… Even now, I need these stories.” – Ardra ([05:16])

• Relatable to All Audiences ([05:59], [64:23])

  • The memoir is “more than a story about MS”—it’s a coming-of-age tale, a love story, and relatable to anyone facing adversity.
  • Non-MS readers have also been deeply moved.

3. Taking Control of the Narrative: Humor and Honesty

• Balancing Humor & Grit ([07:01])

  • Ardra applies Nora Ephron’s philosophy about “owning the joke” to MS— reframing humiliating moments with self-deprecating humor for empowerment (e.g., “peeing your pants at the mall”).
  • “When you tell people you slipped on a banana peel, it’s your laugh… Nobody need make fun of me because I decided it’s a rom com instead.” – Ardra ([07:01])

• De-Stigmatizing MS Realities ([06:03])

  • Openly discussing taboos like bowel issues and guilt, Ardra stresses vulnerability is necessary for utility: *
  • “If I’m going to write a book that’s going to be useful at all, I have to talk about things that are difficult.”* – Ardra ([06:28])

4. Diagnosis and Shifting Identities

• The Immediate Shift After Diagnosis ([08:50])

  • The hosts recall Ardra’s story of being treated differently minutes after diagnosis, such as being ushered into the front seat:
  • “Two hours ago you were…you had something going on, it was a condition, but it didn’t have a name.” – Brooke ([09:44])
  • Ardra reflects: “Just, you’re delicate now…” ([09:53])

• Love Letter to Relationships ([11:50])

  • The memoir is as much about Ardra’s relationship with “the banker” (her husband) and her supportive circle as about MS.
  • The tone is vulnerable, showing her private and romantic sides.

5. Navigating Fear, Guilt, and Support Systems

• Unpacking Emotional Burdens ([13:12])

  • Chronic illness brings not just physical limitations but persistent fear and guilt—about being a burden to loved ones.
  • “I’ve often said the worst symptom of MS is fear. Somebody commented… the worst is guilt. And I think it’s worth exploring…” – Ardra ([13:13])

• Letting Loved Ones Help ([15:29])

  • Parents and partners often want to help; letting them can be mutually beneficial.
  • “As adults, we’ve got to let our parents still be parents… Sometimes it feels good to help people.” – Ardra ([15:52])

6. The Changing Nature of MS

• Needs Evolve Over Time ([16:49]; [22:30])

  • The book addresses the different needs of the newly diagnosed vs. those with advanced illness—each stage bringing unique challenges.
  • “MS isn’t a singular event… With each inch of progression, there’s a new dilemma, a new pivot to be made.” – Brooke ([22:30])

• Perpetual Grief and Finding New Baselines ([23:22])

  • Ardra articulates the ongoing process of loss, adaptation, and reacclimation as MS progresses.
  • “Every now and then, we are spiraling again and need that extra bit of support before a new baseline.” – Ardra ([23:22])

• Hope and Modern Treatments ([25:02])

  • New medications offer more stability now, which wasn’t as available for those diagnosed earlier.

7. Mobility Aids and Rewriting Disability Narratives

• Initial Resistance and Embracing Aids ([19:49], [29:10])

  • Like many, Ardra and the hosts resisted mobility aids at first—grieving the need—but ultimately found liberation in using them.
  • “We interpret using mobility aids as giving up, and it’s not that. It’s the opposite… doing what you need to do to participate in your life.” – Ardra ([29:10])

• Impact of Representation ([32:49])

  • Ardra’s public “ownership” of stylish mobility devices (her “Optimus Prime” Rollz Motion rollator) helped others reframe aids as empowering, not stigmatizing.
  • “I was just putting out what I needed to see. Now it’s everywhere. Sometimes it’s fake it till you make it.” – Ardra ([33:29])

• Design and Dignity in Disability Decor ([53:38])

  • Calls for better-designed, less medical-looking assistive devices.
  • “We don’t have to look like we live in hospitals… Why can’t a sharps container be cute and pink with daisies?” – Ardra ([54:19])

8. Healthcare, Treatments, and Systemic Barriers

• HSCT Experience – Systemic Frustrations ([35:12])
  • Ardra and Jodi share candid experiences with the Canadian healthcare system and the barriers to getting stem cell therapy (HSCT). Both express frustration at being told by a high-profile neurologist to “wait until you’re worse.”
  • “Why would you say that to anyone?” – Ardra ([37:39])
  • Systemic barriers persist even for those motivated to pursue cutting-edge treatments.

9. Visibility of Disability & Societal Perceptions

• Invisible v. Visible Symptoms ([41:24])

  • There are challenges to both “invisible” and “visible” MS symptoms—one brings skepticism, the other social stigma.
  • “There’s a dark side to both experiences… it’s exhausting keeping secrets.” – Ardra ([41:24])

• Workplace and the Pressure to Prove ([43:42])

  • Ardra poignantly describes the pressure to justify joy or ability, fearing it will undermine claims of disability.
  • “You have this feeling that you have to constantly explain how much you’re suffering.” – Ardra ([43:42])

10. Redefining Roles in Relationships: The “C-Word”

• Caretaker vs. Partner ([45:21])

  • Ardra resents being labeled as her husband’s “caregiver,” as it erases her contribution to the relationship and feeds into cultural narratives that undermine mutual support.
  • “Calling him my caregiver erases all the care I give for him… all our relationships involve some caring.” – Ardra ([45:29], [48:21])

• Re-valuing Invisible Labor and Interdependence ([50:40])

  • Ardra urges listeners—especially women—to itemize and recognize their own unseen contributions, combating feelings of being a burden.
  • “Honestly—make a list. Write down all the things that you do… Sometimes when we’re feeling useless, it helps to write that stuff down.” – Ardra ([50:40])

11. Embracing Adaptation & Evolving Attitudes

• Refusing to Just “Keep Fighting” ([55:08], [56:43])
  • Ardra notes her past resistance to “accepting” MS (“Serenity is for quitters”), and describes how peace and practical adaptation eventually trumped perpetual struggle.
  • “Adjusting and adapting is a much healthier place to be… It’s a lesson you have to learn on your own.” – Ardra ([55:08])
  • “It limits me every day. Doesn’t mean my life sucks… but sometimes it gets the best of me.” – Ardra ([56:43])

12. Dating, Self-Worth, and Community

• Romantic Relationships with MS ([57:03])

  • Ardra shares vulnerability about dating and societal perceptions; self-worth plays a critical role.
  • “There will always be those who can’t imagine having a partner with MS… It makes them not enough.” – Ardra ([57:03])

• The Value of Community and Representation ([61:29], [63:28])

  • Ardra’s confidence was rooted in the unwavering support and self-esteem built by her parents.
  • She encourages people with MS to “take up space,” to be visible, and to help shift society’s expectations.

13. Book Reception and Legacy

• Universal Relevance ([64:23])

  • The book resonates not only with MS patients, but also with those outside the community, shifting perspectives about disability writ large.

• Inspiration, Storytelling, and Moving Forward ([68:51], [70:28])

  • Jodi shares how Ardra’s storytelling inspired her to begin writing her own story. Ardra encourages creative expression from others—stating, “We all have a different story, and we all have a voice.”

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Notable Quotes & Memorable Moments

• On Humor & Ownership: “When you tell people you slipped on a banana peel, it’s your laugh… Nobody need make fun of me because I decided it’s a rom com instead.” – Ardra ([07:01])
• On Guilt: “One of the burdens of chronic illness…is not just worrying about your body, but how your body impacts the people in your family…The worst symptom of MS is fear. Someone commented…guilt is the worst. I think that is worth exploring.” – Ardra ([13:13])
• On Mobility Aids: “We interpret using mobility aids as giving up, and it’s not that. It’s the opposite… doing what you need to do to participate in your life.” – Ardra ([29:10])
• On Systemic Medical Bias: “I was also told, ‘If you had come ten years earlier, I would have fixed you.’ To me, it felt like a really cruel and unnecessary thing to say.” – Ardra ([36:59])
• On Self-Worth & Relationships: “People who can’t see my self-worth don’t make me worthless. It makes them not enough.” – Ardra ([57:03])
• On Parental Support: “I was taught to never hide my sparkle. My parents’ deluded faith in me has given me the deluded faith I’ve needed in myself.” – Ardra ([61:29])
• On Representation & Advocacy: “When we are inclined to hide our MS, we are inadvertently contributing to that narrative…It takes people being able to say, ‘I have MS, I am disabled, and I deserve to be here.’” – Ardra ([61:29])
• On Inspiration: “We all might have the same diagnosis, but we all have a different story, and we all have a voice.” – Jodi ([69:34])

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Timestamps for Major Segments

• Opening & Introduction: 00:00–02:10
• Why Write This Book / New Depth: 02:10–06:03
• Humor & Honesty in Telling the MS Story: 07:01–08:31
• Diagnosis: The Front Seat Moment: 08:50–10:26
• Love, Relationships, Guilt: 11:07–15:52
• Navigating Care, Guilt, and Letting Others Help: 15:52–16:29
• Evolving Experience (Newbie to Veteran): 16:49–25:02
• Discussion on MS Treatments (HSCT): 35:12–40:02
• Mobility Aids, Representation, and Acceptance: 19:49–34:03
• Workplace Pressure & Proving Disability: 41:24–44:48
• Caretaker/Caregiver Word Debate: 45:21–53:26
• Disability Décor and Design: 53:38–54:43
• Fighting vs. Accepting: 55:08–56:43
• Dating and Worthiness: 57:03–61:29
• Community, Inspiration, & Wrapping Up: 61:29–75:29

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Overall Tone

The tone is candid, warm, irreverent, and empowering. Ardra and the hosts do not shy away from the messy, difficult realities of MS, but they also offer hope, laughter, and solidarity. The conversation feels like an intimate coffee chat among friends who “get it,” and offers validation, comfort, and inspiration for anyone touched by MS or chronic illness.

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For listeners or readers:

• Ardra’s book, FALLOSOPHY, is recommended for anyone with MS, their loved ones, medical professionals, or anyone seeking to better understand chronic illness.
• The episode encourages self-compassion, acceptance, humor, and not being afraid to take up space.
• Ardra’s work demonstrates the crucial power of storytelling and representation in transforming how we see illness, disability, and ourselves.

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For more info:
Find Ardra at Tripping on Air Blog, and look for FALLOSOPHY wherever books are sold. The episode details additional accessibility options including large print and an upcoming audiobook in Ardra’s own voice.

Transcript

[A]

Welcome to the msgym podcast, where we give you the tools to live life by design, not by diagnosis. I'm your host, Brooke Slick, along with co host Jodi Feltham. And here we go. In today's episode, Jodi and I get to check in with Ardra shepherd about the engaging complexities of her intriguing new book, aptly titled Fallosophy My Trip Through Life with Ms. You may think you already know Ardra from her award winning blog, Tripping On Air, her social media content, or her popular podcast. But trust us, if you really want to know her, you need to place this revealing page turner of a memoir on your shopping list. Until then, Jody, Ardra and I are going to give you a glimpse of what you can expect. Let's get this conversation started, shall we? Ardra, thank you so much for joining us today on the msgym podcast.

[B]

You guys, thank you for having me. It's such a pleasure to be here.

[A]

We're so excited. I think the last interview that I had with you was a little over five years ago.

[B]

No way.

[A]

Yep. It was November of 2019.

[B]

That's like beef. That's the before times. That's like literally before COVID So it.

[A]

Was interesting reading the book, the timeline, because, you know, you read the BEF I. When I was reading it, it was before I knew. Knew you before I knew. So it was cool. It kind of filled in the gaps of a lot of things. Yeah, there's a. Jody and I were just talking about the fact that there, even though, you know, you have like a huge following on social media, you have a blog, you have a podcast, you've, you know, had a television show, you all of these different things, there's still, you still haven't exp. I. I don't think you still had not exposed as much as you do in this book. Am I right?

[B]

Oh, God, absolutely. Absolutely. Yeah. I feel like the, the blog starts in like 2015, but my Emma story starts in 2001, so. But even, even, yeah, the blog is, is, is only a fraction of really what's covered in the book for sure.

[A]

Because I thought, I always thought, wow, she really, she puts it all out there. But you really weren't. There's so much more. That's so much more interesting and there's so much more depth to your entire story that there wasn't. It's not like you were a surface person by any means, but this really goes deep. Do you think, Jod?

[C]

Yeah, I think so. I really feel like I got to know who Aror was like some of the personal stuff that we, that we don't necessarily read about in her blog. Like it was some personal details and it, it, it kind of made archer feel more 3D even.

[A]

Yes, absolutely. That's a, that's a perfect description because I just, and I think every point, every chapter, anyone at any level where you're, whether you're a newbie or a veteran of Ms. Is going to relate to so many things. They're going to be relieved that they're not the only one, you know, oh, it wasn't just me. Oh, I had a situation like that. You know, it really, it's comforting. Even though some of it is like if you don't have Ms. Or a chronic illness, you might be like, oh my God. We're all like, oh, yeah, yeah, you know, that kind of thing.

[B]

But I really didn't want the book to sugarcoat anything. I really wanted, you know, it to be like, this is what it's like without being alarmist or scary. But, you know, there's, there's, I think, value to saying like, this is what it's like and this is what you can do about it.

[A]

Yeah. I also thought that even though it's a book about a woman who has Ms. And the evolution of that, I also, in the, through the whole book, I felt like I was watching a movie. I could see all the scenes. I could see, you know, your parents house. I could see your apartment, your first apartment, you know, and the colored walls and the, all of it. It's a story about a woman, I mean it. Over and above a woman with Ms. It's, you know, it's a coming of age thing as well, you know, that so many of us can relate to. It's kind of rom com ish. It's kind of like, I don't know, I loved it and I'm like, I'm hoping everybody buys the book. And of course we'll have a link to all of that in the end, so. Well, tell me this because you have already shared so much with the Ms. Community and beyond.

[B]

Yeah.

[A]

What, what was your goal with this book?

[B]

That's a really great question. I feel really excited that the book is resonating with the general public. It's always exciting for me to hear from somebody who has absolutely no connection to ms, who has been moved by this story. But first and foremost, I wanted to create something for the Ms. Community. I wanted to put into words that the kind of story that I was looking for when I was diagnosed, the story Even now that I need, I really wanted it to be that.

[A]

Well, I think you accomplished your goal.

[B]

Thank you. I mean, I know there are other books out there about ms, but. And I've read a lot of them, but I haven't really found what I was looking for, especially initially. But even now, just like the true kind of grittiness about it. The real, real. The stuff that nobody wants to talk about.

[A]

But yeah, right. And we all know what those things are, you know?

[B]

Yeah. And it's like, if I'm going to write a book that's going to be useful at all, I'm going to have to talk about these things that.

[A]

Are.

[B]

Difficult to talk about. Otherwise, there's no point.

[A]

And I think you put a bit of a comedic twist on things without making it sound like, oh, no big deal. Because it is a big deal. A lot of the things that we deal with, have dealt with, will deal with are a big deal.

[B]

Zenora Ephron quote that informs a lot of the way I wrote the book, but also the blog before that. She said something along the lines of, when you slip on a banana peel, people laugh at you. And when you tell people you slipped on a banana peel, it's like your. It's your laugh. You're not the butt of the joke. Like, you control the version. And I would say, you know, replace slipped on a banana peel, which is this like, embarrassing, possibly humiliating thing with peed your pants at the mall. And that's why I tell my story about Ms. It's my story. I control the version. Nobody need make fun of me because, you know, I decided it's a rom com instead.

[A]

Right. You beat them to it.

[B]

Yeah, yeah, yeah. And I feel like there's a place for humor in any kind of whatever we're dealing with in life. But it's like not making fun of me in a or Ms. It's. It's really actually hard to articulate how to use humor with that, but it is about taking the power away from that thing. And also, like, deciding what gets to be something that feels humiliating or demoralizing and. And reframing that so that it's not somebody telling you how to feel. You are deciding how you feel about it.

[A]

Right, right. See, this is the part where I have so many notes and they're all so good. Not my notes, but your quotes, that it's hard to decide where to begin.

[B]

I'm just, like, so delighted that you guys enjoyed the book so much. Like, it really means a lot to me. Thank you.

[A]

Well, if we do, I'm like, I. I'm. That's why I'm. I really am excited for our listeners to hear it because they're all going to be like, oh, yeah, I'm going to start to the beginning of the story of the evolution of your Ms. And after it, this is the day that you were diagnosed. You get in the car with your parents and you say your mom is, quote, insisting that you sit in the front and that your new sick person status has already changed the dynamic of how you're going to be treated. And I'm like, isn't that the truth? It's like somebody flips a switch and all of a sudden, because you have this diagnosis, you know, two hours ago you were. You had something going on. It was a condition of some kind, but it didn't have a name.

[B]

I was back two hours ago. Now I'm in the front seat.

[A]

Right, right. Like, how did that feel?

[B]

It felt like my mom was prioritizing my comfort, doing, you know, this very small gesture of what do you do when the world implodes? And it's this big crisis moment? But it was a small gesture. You sit in the front. I was 23. Normally it was my parents car. Normally my parents would be in the front. But yeah, it struck me as like special consideration. Just, you're delicate now or, you know.

[A]

Yeah, right. When you told your husband, did he have the same reaction?

[B]

So he was my boyfriend at the time and not even a serious boyfriend. Right. It was the guy I was dating. And he has never been as verbal and in touch with his feelings as I am. So he seemed to take it in stride. Of course, I was processing so much, but it was certainly very difficult in the beginning. I didn't know if we would make it. I don't think he knew either.

[A]

Yeah, I think that was one of the. And Jodi and I were talking about this beforehand. One of the most interesting things about the book, because I followed you for a long time and something that's always, always, always been a mystery is the banker. I always had this vision of who the banker was, and he ends up being what I had envisioned. But not to, like, there's so much about the banker. I said to Jody, I said, I feel like at least 40% of the book is your relationship with your husband.

[B]

It's a bit of a love letter to my husband and also to my family and friends who support and love me 100%.

[A]

And it plays so well to the story because. And it does. It feels like you're saying, okay, you guys, I'm really gonna let you in. I know you think you know me, but you don't really know me. And here it is.

[B]

Wow. I, that's, it's so interesting to hear this perspective, because I feel like when you're talking earlier about, I'm really gonna let you in, I'm like, oh, we're talking about bowel problems here, but it's also the romance.

[A]

Right, Right. Totally. And his dedication. But with, And I think we all do this. I think at least I do sometimes we, the ones with ms, make a bigger deal out of it than our spouses, friends, whatever, do. We're the ones that are overthinking it. They're just like, oh, come on, we'll, we'll take care of your, whatever XYZ problem you're having today. Come on, let's go. You know, we're the ones that are overthinking. We're the ones that are thinking that we're going to be, you know, drag everybody down, hold everybody up. They're just like, let's go, let's go. Have fun.

[B]

I don't. It's not our fault. We've been conditioned that way. And one of the burdens of chronic illness or disability like Ms. Is not just worrying about your body, but worrying about how your body impacts the people in your family, your friends, the people that love you. I've often said that I think the worst symptom of Ms. Is fear. And somebody commented on that recently, saying that they think the worst symptom is guilt. And I think that is something worth exploring also. For sure.

[A]

Absolutely. Absolutely. Yeah. Like, yeah, I, I, I can totally relate to that. I had a stroke at 35, three months after my husband and I got married.

[B]

Wow.

[A]

So you, you talk about guilt just before Ms. I didn't have Ms. Then, so I get the guilt. And it's been a long time. We've been married 25 years, and I do have guilt, but I brought that out. I bring that on myself.

[B]

Well, yeah, it's not your fault that you had a stroke. Right. We, we do assume these emotional burdens, and I think something we all need to work through, and that, I think, is where the supportive community can come in and help us figure that stuff out, where we can release ourselves from some of these responsibilities that we don't have to take on that, you know, that we shouldn't take on. It's not helping anyone if I feel guilty or stressed out about that.

[A]

Right, Right.

[C]

No, I just, I Agree about that guilt piece. Because. Because I'm. I'm 45. My parents are, like, mid to late 70s, and yet they do so much for me. My dad drives me to all my appointments. I always get shotgun because it's the easiest for me to get in. And so my parents do so much, and I. I look at them and, like, thank goodness they're in the shape they're in. But I feel guilty all the time because they do all the physical. They're in renovating my bathroom, and I'm just sitting there watching them. And so there's. So that guilt piece is so much in there.

[B]

They don't want you to feel that. Jodi. I. As parents, I feel like they want to take this away from you so badly, and they can't. Right. But they can drive you to appointments, and I. I bet they are grateful that they can help in that way.

[C]

Thank you for that. I know. I know many times my mom has said if she could take this from me, she would.

[A]

Right.

[B]

Right. Like, that's a massive thing. So just. I think sometimes as adults, we gotta let our parents still be parents. And my parents are still around, too. They do a lot for me, and I feel really grateful and lucky to have that. And, like, you know, Jodi, yourself, that it feels good to help people. And so sometimes, even if our impulse is to deny that, I don't think we should. I think it's the way you can let your parents help make something better that they can't make go away.

[C]

It's a good perspective. Perspective shift to see it that way.

[A]

You know, the book goes from the viewpoint of somebody you. From newly diagnosed to now. Yeah. And I was just thinking.

[B]

There'S a.

[A]

Quote in your book that says the needs of the young and newly diagnosed are as critical as the needs of those with advanced illness, but those needs are fundamentally different. My question to you is given the following that you have, which is newbie to veteran. Do you ever. And you are now, of course, in the book, you're even more open than you are in anything else, as far as I'm concerned. But do you ever type something up that's so raw? And so. And you go to hit the send button, the post button, you're like, I can't do it. This is going to freak too many newbies out.

[B]

That's an interesting question. I actually am always surprised when a newbie reaches out to me to say that I have helped, because I do have an awareness of, you know, if people see me using a mobility aid A progressive illness. I've had this disease for a long time that, that can be frightening. And I remember how frightening for me that was 20 years ago. I also think I didn't see versions of me 20 years ago who, we're living with this disease and we're disabled, but actually we're also living well. So there is that. Every now and then I will, I think, like most of what I post, certainly on like Instagram or Facebook, has a bit of a light hearted edge to it. Like it always irks me if I post something that I think is kind of funny, but I get like the crying face emoji. I'm like, yeah, it'll be, you know, It'll be like 45 people laughed and like one person put the crying face emoji. And I'm like, that is not the vibe I was going for at all when I made a comment about like clean hair day. You know, like, don't cry over that. It's just like, yeah, right.

[A]

If I remember correctly, your friend Darcy.

[B]

Yeah.

[A]

There'S. There. There was a day that you guys were meeting up and I'm not sure if I get it wrong, I apologize. But you hadn't seen her in a while and she shows up and she pulls out a cane and I think it took you aback and you're like, wow. Yeah. Either you didn't know that she was using one, I don't know. And my question was, I'm. I was thinking to myself, I wonder if that was the first time that you even thought that could be me. Or maybe I want to do that. Like, was there something about that instance where this person, your close friend, who also has ms, is using a cane? Like, was that like a beginning point? Because you're like the queen of mobility aids now. Like, you have made mobility.

[B]

But I know I was not always. I was like, I think it is not. I think it is very unusual for somebody to just embrace mobility. It's right off the bat, like maybe in the next generation. I don't know. I don't think so. I think it is something need to properly freak out about and grieve. Like, it is scary. Like the hope or the promise that I would give is to say, like, you will get there. You know, like, you might feel really shitty and scared about it at first and you should, but you won't always feel like this. Like, you will eventually figure out that this is a tool that can help you live. It's not limiting. It's, you know, there's different aids for different days. Uh, there are degrees you won't. You don't necessarily need to use it every day. I would say my first, like, in my face introduction to mobility aids was at my first support group meeting, which was, like, years before I saw Darcy with that cane. And that was what was really scary for me. I was newly diagnosed. That harkens back to what you were saying, Brooke, about the needs of the newly diagnosed being different for the needs of people with more progressive illness. Because suddenly I was in a room full of strangers who were far more disabled than I was. I didn't have any context, and it just felt like an inevitability. I didn't know that by the time I saw Darcy with a cane. When I think of that encounter, I think of how we sometimes compare ourselves not to healthy people, but to other people with Ms. And how toxic that can be. Because at that she had pulled up to that lunch and exclaimed to me, like, oh, my God, you can still wear heels. Like, she was so jealous of that. And I was like, but you can drive. Like, I had lost my license because of vision loss right at the beginning. Right? And, like, we went into this restaurant full of people who presumably could wear heels and drive, and we were not thinking about them. We were comparing ourselves to each other. It's not helpful.

[A]

Yeah. And we all do it. One of the quotes from your book, this was after being told that you can should consider a walker. Walker. You said, living in slow motion terror isn't easy. My panic feels like it's about the walker, but the walker is just the thing. I can point to the symbol, the bookmark of where I am in the story.

[B]

Yeah.

[A]

Like, there are little gems like this all through this book, and so many that I would read the line and I'd be like, I'd have to sit for a minute before I keep going on. Like, yeah, yeah. And then you said, and this is one of those things that says I should be better at getting worse by now. After all, it's been 15 years. But it's not like Ms. Is a singular event. And I think that statement, it's not like Ms. Is a singular event, is huge because it evolves. And when they say it's a progressive disease, it is a progressive disease. With each little inch of progression, there's a new dilemma, a new pivot to be made.

[B]

I think the people in our orbit, in our friends and family, colleagues, you know, they process our diagnosis when we're diagnosed. They grieve with us. They accept, without necessarily understanding, the perpetual Grief that can happen for the person with Ms. We don't lose everything at diagnosis. In fact, we can lose and gain and lose and gain. And, you know, vision loss can feel like an entirely different disease than weakness in the legs, than pain, than bladder problems. It can feel like you are constantly under threat or reality of something new to deal with all the time. And I talk about the part in the book, sort of around the middle, when I realize that my Ms. Has become progressive. It almost feels like a new diagnosis. And so that's something I think, that friends and family can keep in mind. You know, you might think that your person has their shit together, but and is, like, handling it. But every now and then, we are spiraling again, and we might need that extra bit of support from time to time before we get used to a new baseline.

[A]

Right, exactly. It's always about going back. You always hitting a new baseline. You know, you rarely get back to the baseline. Baseline from when you were first diagnosed.

[B]

Yeah.

[A]

I mean, and I think that's difficult for some people to hear, maybe newbies in particular.

[B]

And I will add to that, you know, the medications are better and that there is definitely more hope for people on these newer therapies that their illness will plateau and be stable for a very long time. So it's not an inevitability the way it might feel for the three of us who've been diagnosed. Our diagnoses predate a lot of these interventions.

[A]

Right. That was one of my questions from the story, trying to figure out, because you talked about this injectable that you took that gave you flu, like, symptoms, and I'm thinking, oh, so did mine. But was it copaxone or was it Beta Saron?

[B]

It was Rebif and then it was copaxone. I feel like I've been on them all.

[A]

Okay. I, I, I've never been on Rebif. Have you been on Rebif, Jody?

[C]

No. Avonex is the only injectable.

[B]

Avonex is the same as Rebif. I think it might. Yeah. Yeah, okay. Like, it might have been a different dose, but very similar.

[A]

Yeah.

[C]

Arjo, I wanted to ask you a question, too. When you talk about, you know, embracing these mobility aids or kind of repelling them, did you find a different dynamic? Did your husband view the mobility different than perhaps your parents did? Like, was one more willing to, like, shove it in your face so you're safe, and the other one's like, no, no, she's fine. She's fine. She can manage on her own.

[B]

All right. That's so interesting. My husband doesn't have a lot to say. I. He was nervous, I gotta say, when I brought home the first, like my Optimus Prime, I call my Rolls Motion, which converts. It's a rollator that converts to a transport chair. We got that in advance of a trip to Spain. And it was, you know, I think that's like a normal thing maybe to get a mobility aid before you go on a trip because you're going to be more active. It's sort of maybe a bit of a gateway. And. And I had spent a good deal of a previous trip, like, crying in a park because I couldn't get off the bench. And so we thought, we'll try this. He was nervous. He practiced taking that thing apart, folding it up, putting it in the track in the trunk of a car with, like, a timer because he was nervous about holding up cab drivers, you know, about being in people's way, all this kind of thing. But it was very, very, very quick for both of us to learn how much more I could do on that trip because of this device that he was very quickly converted to loving it. You know, instead of needing to rest for three hours in the afternoon in the hotel, I was like, good to go all day. And so I think it's a learning curve for everybody involved in our lives. And there isn't enough information out there. You know, we think we hear this phrase confined to a wheelchair, which is like nails on a chalkboard to me. And that's talking again about what you said, Brooke, about, you know, it's just the symbol of what's going on. It's actually a tool that. That can help you. So I think he is quick to embrace. I think my parents, of course, are like, do what you need to do. I think my dad seeing me using mobility to still pretty emotional for him. And I don't know if that's generational either there. I don't know if he's gonna watch this interview. But, like, there's times when he should be using a cane in his 74 years that he's still not comfortable doing it. Right. Like, these are profound stigmas around.

[A]

Yeah.

[B]

You know, just like using mobility aids or appearing, like, showing any weakness. And I. I feel like it's really important for us to change the cultural narrative about this kind of stuff because we put ourselves at risk. It's so stupid.

[A]

Right? Right. You know, my biggest regret is not getting the things that I've. The AIDS that I've gotten sooner. It's not your fault.

[B]

Brooke, because, like, you've just been fed this narrative, right, of you've given up. And I think that's something that we are spoon fed when we are diagnosed either, also is that you need to fight this disease. And so we may interpret using mobility aids as giving up. And it's not that. It's the opposite of that. It is like doing what you need to do to show up and to keep going and to participate in your life. Too many people stay at home and don't. Because they don't want to use this thing.

[A]

Right. When someone's losing their vision. I mean, think of it that way. You start, let's say you're in your 40s and your vision starts going, going, going. You know, you don't say, oh, are you sure you want to use glasses? I mean, you sure you need those?

[B]

But how many people don't get hearing aids that need them?

[A]

Right. Well.

[B]

Shame on you, Brooke.

[A]

Oh, I know. I haven't been able to hear out of this ear in like 25 years. And I just. My husband's like, why don't you? I mean, because I'm used to it now, but. Yeah, I know, I know. But we all do it.

[B]

Yeah, we do it. We are in our heads about it for a long time. I would hide my mobility aids in photos. And, like, the reality is nobody cares as much as you do, and you're missing out and you're putting yourself at risk. You know, a fall can be catastrophic.

[A]

I'm telling you, I. I use a power chair around the house almost exclusively now. Not exclusively. I. I stand to cook and shower. I can do all those things. But going from one end of the house to the other all the time is exhausting walking or with trekking poles or whatever. And a friend gifted me a power chair. I wasn't looking for a power chair. Power chair. What an idiot I was. I get so much done. I haul laundry back and forth and, like, I move furniture around and all kinds of stuff.

[B]

So, yeah, yeah, I think there's two important takeaways there. Like the intelligence of preserving your energy to do things that matter to you instead of, like, wasting it standing and doing the dishes to prove I don't know what to who. And also just the idea of using these things to preserve energy. Like, we might see you using a power chair and not realize that you do have some mobility that you can transfer, that you can stand in the shower. All of these things, Right. Like, it's not so black and white.

[A]

Yeah. I mean, the truth, I wish that.

[B]

Had been explained to me that, like, you know, using a wheelchair doesn't necessarily mean full time wheelchair use. I wish that I had known that.

[A]

Yeah, right. And I think people still don't know that. And that's. Right. You know, when I'm posting on social media or wherever, I'm trying to show people the things I get to do because of my use of mobility aids.

[B]

Yeah.

[A]

Like, I'm like, you could do this too. This is what I wasted my time not having. So I missed out on all these things and I'm not going to do that anymore. I. I don't know. But I think you. You were the first person in my msphere that really with your. What's the name? It's Rolls. It's a Rolls.

[B]

My Optimus Prime. It's a Rolls Motion.

[A]

Yeah, Yeah.

[B]

I also have the biker.

[A]

Oh, okay. You were the first person that I looked at and I was like, because I'm vain. I'm vain as hell. You know, And I'm like, look at her. Like, she's stylish. That thing's, you know, as sexy as a mobility aid can be. I mean, it was the package and it really got me thinking, okay, maybe I can pull this off. So every little. I think you may underestimate the impact that you've had on the community, but.

[B]

I super appreciate that. I know exactly what you're saying. Because in 2017, I was looking for anything. Anything Googling. Looking for images of people using mobility aids that looked cool and was not finding them. And I thought, I'm going to put this out there. And of course, now it's everywhere I see it. And I do not claim responsibility for that culture shift. I'm proud to have been a part of it, but it is. I was just putting out what I needed to see. And sometimes it's like, fake it till you make it, you know?

[A]

Yes, 100%.

[B]

Yeah. Like, I, you know, was posting those photos, trying to convince myself a lot of the time.

[A]

Yeah, yeah, yeah.

[C]

I first heard the roles motion through you Ardran and I ended up getting one. And I have to say that comes with me on all of our trips.

[A]

And.

[C]

And it. Instead of me being a spectacle like that, Rolls Motion is like the highlight. People want to know how it works. It's like. It's like a Transformer. Like, people all over.

[B]

That's why I call it Optimus Prime.

[C]

Yeah.

[B]

I was just in Mexico in March, and I'm pretty sure I sold one at the resort to a family who is traveling with Their daughter. And, like, I let her try it out, and they were wowed by it. So I think it's, like, very fortunate that when I was having this disability epiphany, there were companies that were making better designed, more aesthetically pleasing devices. And I hope that, that, that continues because we do deserve options. There's no reason why all our stuff should look so medical, right?

[A]

Exactly. Okay, so with regard to medications, and this is. Jody and I both found this very interesting. Number one, I did not know Jody and I have both had hsct, hematopoietic stem cell transplant. Jody in Mexico, me in Russia. I did not know that you had a whole HSCT chapter in your life. Had no idea. But Jody and I both, because I said she sent me her notes of what she might bring up today, and I sent her mine. And without naming the doctor whose name we know who it is I had in my notes that I sent to her why I am not a fan of Dr. Dr. Muppet and why I didn't trust him from the second he told you that he should wait, you should wait to have it. When I saw that he told you you should wait until you're worse, until he would consider you for hsct, I about went through the roof. Like, it's the opposite. So that. And then you didn't know any better, so you just left the office. And that. Now, Jody, you can share your story.

[C]

Yeah, well, I went, I saw the same doctor that was after I did my stem cell in. In Mexico. And he unfortunately mocked my procedure, saying that it wasn't. It was either chemo light or baby chemo. And by the end of the appointment, he said to me, he said, if you had come to see me 10 years earlier, you wouldn't be in the situation you are now.

[B]

Jody, you had emailed me with this comment, and it has haunted me for the last few days because I was also told if you had come 10 years earlier, I would have fixed you. And to me, it felt like a really cruel and unnecessary thing to say. And, you know, you can. I can kind of think maybe it was something set off the cuff or a one off, but knowing that you had been told the same thing was just like stomach churning for me. Why would you say that to anyone?

[A]

Why.

[B]

What year did you have your HSCT, Jody?

[C]

I had my. My stem cell in 2019. So I went and saw him about a year after. And then. So we talked about. And obviously saw my disability and everything, but he made those comments, but part indra, because we're Both. We're both from Canada. It is very hard. It's not like the States. You can't just fire neurologist and hire a new one. I had tried for probably a decade to try to get into that clinic to. And I kept getting rejected over and over and over again. So it was never, it was never an option. It's not like I. I'm like, oh, I could have gone and see him 10 years ago. That was never an option for me.

[B]

It does make me wonder what, what was the point? Was it to undermine your confidence in your existing neurologist? It's. I don't know. Part of me feels like, reluctant to, you know, speak about one. One doctor. It's complicated. I would say that as Canadians, we are very proud of our health care system here. We know that HSCT is the most effective treatment of Ms. Yes, there is risk, but it is tragic that it is not available to more than a handful of Canadians a year. And in the absence of that option, you know, discouraging patients who have the means to travel and have it elsewhere, I think is really unfortunate. But I also think, you know, what. What can we do as Canadians to. To like, get the ball moving on this procedure that we know is. Is highly effective. It's. It's too late for me to have it now, but it could certainly help a lot of other people. It's such a tricky conversation or like, tricky topic. And I think it's why I never addressed it in the blog because, you know, it does really deserve kind of a book book on its own. The whole subject is so complicated. It's get. Yeah, it's. It gets into the weeds for sure.

[A]

Yeah. And one of the quotes regarding it, it was on how people perceive you with a mobility device. I've been shoving my Rollator out of the picture since it arrived in my doorstep. And before that, I was ditching my cane for pics that were private. I kicked my rollator out of the frame out of fear of how strangers will judge me. Like everyone else, I've been brainwashed into interpreting mobility aids as symbols of brokenness. I need to decide that disabled is a look I can rock. It's hard to accept a disability can be normal and even beautiful because we never see it represented that way. And that's. I mean, that's basically what you were saying. There was no example of what beauty, grace and a mobility aid. You know, it's the. Just this clunky accessory that pegs you as different. It's much like you can get Away with Ms. Under the radar until your Ms. Becomes visible. You start limping, you start, you know, losing your balance, then it's real. There's no hiding it.

[B]

Yeah, I don't know, Brooke. I feel like there are. There's a dark side to both experiences, right? When. When all of your symptoms are invisible, it is very hard, especially if you feel like you have to hide an Ms. Diagnos. It can be really hard to articulate or advocate for what you need, and it is exhausting keeping secrets. It is exhausting. Try to power through with. When your body won't cooperate, whether you are hiding fatigue or bladder symptoms or whatever. So I think that there. Yeah, I don't want to. I don't know that it's necessarily a case of, like, getting away with anything there. There is definitely a. A little bit of relief that comes with having more visible symptoms in terms of being taken seriously, in terms of being accommodated. You know, I don't. I. I don't wish progression on anyone, least of all myself, but there are definitely experiences that are. That complicate things in. In both capacities. And the other thing, you know, when your disability does become visible, it doesn't mean that your invisible symptoms go away. Like, now you've got invisible and visible illness, right?

[A]

In the book, you mention a corporate job that you had where you had been diagnosed and you were still working, but I think you had, like, maybe altered your hours or something, but at the same time, you had taken a trip somewhere and you were doing this and you were doing that and you had this, you know, you had to balance your co workers, you know, your boss or whomever looking at you. Like, you say you have Ms. And everything, but. And you have to, you know, alter your hours and we have to accommodate whatever, but, you know, you're flying off to wherever, you know, and doing this and doing that. Like, do you have a mess or not kind of thing. Like, prove it.

[B]

I think one of the universal upsetting consequences of that situation, that kind of situation is not. Or feeling pressure to not reveal or allow yourself to feel joy or pleasure because you. You have this feeling that you, like, constantly have to explain how much you're suffering. It's like when you fill out disability paperwork, it's so demoralizing, right, because you have to document every symptom in excruciating detail. And, you know, when you're. Just. When it feels maybe healthier to focus on what you can do and what's good about your life, when you have to be constantly proving to other People why you merit accommodations, why you merit benefits, why you can't do certain things. It's like you're not entitled to also feel joy or happiness or you have to, like, hide that part of you, and it sucks.

[A]

Yeah. Yeah. Jody, I know. One point when we were comparing notes as to what we wanted to ask our draw, you had mentioned, well, the C word. We're gonna talk about the C word. Remember the C word? It's not the one you think.

[B]

No, there's more than one.

[A]

It was. Ardra, can you tell us? And then, Jody, you can elaborate and ask questions. Tell us where you came up with the C word.

[B]

We're talking about caretaker, not cure, right? Yeah. Caretaker.

[A]

Yes.

[B]

Yeah. I think a lot of us who have loving partners have heard how lucky we are when our partners maybe haven't heard the same thing. I definitely feel like there is a lot of confusion about roles in relationships and marriages and partnerships and. And also the amount of care that, yes, I need some help, but there's no consideration given for the care that I'm able to give. No value on that. It's not that my partner doesn't value it. It's culturally. There's this impression that I feel like I have to correct. I really get my backup about it. And yeah, I don't like that word at all. I choke on it. I feel like it. I don't want to diminish how much my husband does for me, but calling him my caregiver, like, erases all the care that I give for him. No one would ever think to call me that for him, you know? And my husband doesn't refer to. To himself as my caregiver, but I think other people might see it that way. I don't know. What do you like? I want to know what you guys. How you bump on that word Jody.

[A]

About you, Jody, especially because Jody and her husband. Jody's husband has epilepsy and Jody has Ms. So what are your thoughts on that, Jodi?

[C]

You know what, it's interesting is because I think we use. I remind my husband because someone. Sometimes people say that, like he's my caregiver or something. But then I. I'm quick to remind him that I'm also. If he's my caregiver, I'm also his caregiver because he's. I have the physical symptoms, but he has a lot of the cognitive ones. And so I have to constantly. He's good with his meds, but I constantly remind him of that. And his short term memory is not Any good. So we, we take care of each other and it's, it, it's a different dynamic because we're both, I guess, chronically ill. So we see the word caretaker a little bit different when we use it between ourselves. But I think if someone on the outside uses the word, it's normally labeled against me because they see my physical disabilities. So I think, I think it can be a dirty word when other people use it. I think I'm more likely to get my backup. Because you reference in your book that your husband mentioned on the phone to a co worker and that really got your backup. And so like if my brother in law, my husband's brother made some comment, I think I'd probably like freak out on him and say, well, what about all the things that I do for my husband? I'm like, yeah, it doesn't invalidate it.

[B]

My husband doesn't have epilepsy and like I still do a lot for him. Like, yeah, it's, it's, you know, I think it also just comes down to these cultural narratives, how we value independence. We don't see that as something neutral. We don't, we don't have a respect for interdependence. You know, like, we just, we're living in this like culture that values individualism in a way that's not serving us. Like, we all need support, we all need care. And like all of our relationships involve a degree of caring and caretaking and helping and assistance. But yeah, just kind of labeling one person that way can feel like infantilizing.

[C]

Absolutely, absolutely.

[B]

And it takes away from us being partners. It doesn't recognize would I bring to the relationship.

[C]

Right, right now in, in your book, you, you talk about a specific situation where you and your husband went out and you needed him to do a few things for you and you jokingly made a comment like, can he get my, my drink and my hot pad and this and this. And you're like, how many, how many things can I add to this request before it seems over the top? Now how do you. I know for myself and I know for many other people, we can, we talked about that word burden before. Like when we ask like our spouse or our partner like to do a whole bunch of other things. But like you said, it's not, it's not just a one way street. How do you think other people can start to embrace what it is that they bring to the table, what they bring to the partnership? Because I think especially with physical disabilities, we see the lack or the things that we can't do. And we make, you know, we make them the top priority as opposed to validating the things that we offer. How do you think other people can maybe switch their perspective when they feel like they're just a burden?

[B]

I love that question. And this may seem excessive, but honestly, make a list. Start, like, write it down. Write down all the things that you do, whether it's, you know, writing the grocery list, that takes mental energy. Planning the meals for the week, paying the bills. Do you plan the trips? Do you make sure the nieces and nephews get birthday cards and gifts. Do you phone his mom? Like. Like, write all this shit down. Think of all the identities you have of the relationships you have in your community, whether it's your church, your kids, school, the activity, like, the friendships, the grandmother that you check in on, the neighbor that you give the extra baking to, like all of these things. Sometimes when we are just feeling useless, it helps to write that stuff down and value it and remind yourself of what you have to share because it's probably 10 times more than what you think it is.

[C]

That's great.

[A]

I agree with that. 100. Because it. I. I don't need to write it down. I know every. I always think to myself, this place would fall apart if I wasn't here. You know, there's so many little things.

[B]

I think, just as women, it can feel like that stuff doesn't get recognized Ms. Or not. And so that is, you know, a constant negotiation that I think many of us need to keep in mind.

[A]

Yeah, it's just like, even little things like making sure that I'm always one step ahead of my husband, running out of shampoo or soap or whatever, and then he just opens up the cupboard and it's just there. If I see him, I'll be like, oh, yeah, the soap fairy brought that. You know, just little things like that. I always, every once in a while, I jokingly say, oh, that. You wonder where that came from. You know, just all the little things that we do to keep things going, you know, behind the scenes that are absolutely not physical. My husband, you know, he does physical labor. You know, I do everything else.

[B]

Honestly, we all need to pay the mortgage and we all need groceries. But yes, at the end of the day, the relationships that we have with our extended family, with our friends, with our parents are as nourishing and as important as food and water and air. And it is most often the women that are nurturing these things. And I also feel like you can be very useful in all of these Areas with a lot, with a high degree of disability.

[A]

100%. 100%. Yeah, I agree. I have this whole list of all these quotes, Ardra. One is, I resent all of my disability decor.

[B]

Oh, yes, I do. I really appreciate that. Mobility aids are more stylish. I do have a beautiful shower bench. The rail in the bathroom is not super heinous, but, like, I just discovered what a bed cane is or bed rail, and it's helpful, but I super resent that the company's logo is like slapped on the side of it. You wouldn't do that with a throw pillow or a nightstand or whatever. You know, it's. It doesn't, it doesn't. We don't have to look like we live in hospitals. It does not have to be that way. It's getting better, but.

[A]

Oh, God, yeah, yeah, that's. That's a whole other. That's a whole other episode for sure.

[B]

Because it's also just like looking around and being reminded, yeah, if you're doing injections, like that yellow sharps container, you know, why can't we make that cute pink with some little daisies on it or something?

[A]

Why can't they be pink?

[B]

Why can't they?

[A]

Here's another great quote. This one was on considering finding connection through the Ms. Society. You said, I'm not looking for serenity. Serenity is for quitters.

[B]

I mean, I've evolved, right? I have evolved. And this talks about how when I was first diagnosed, I heard a leading physician give a talk to the newly diagnosed where he said that the patients that tend to do the best are the ones that accept their disability. And I was like, fuck that. Like, accepting is for quitters. You gotta fight this. This is what I believed right when I was 23. This is kind of what we all believe. It's like, don't let this disease change you. Which means, like, deny what's going on. Don't address the problem. And so, yeah, that was very early Ardra sentiment. And, you know, I also talk about how my anxiety about my illness has motivated me to do some things that have been helpful. But ultimately I have learned over, you know, 20 plus years that adjusting and adapting is a much healthier, peaceful place to be. It's more practical. I don't. I'm not super convinced that just telling somebody that it is going to be enough. It feels like a, a lesson that you have kind of have to learn on your own.

[A]

Yeah, yeah, yeah. I remember when on our first interview, you had something like, you said something, you had Said something about, you know, when people say Ms. Doesn't have me or whatever, you're like, that's bullshit. Like, yes, it does. It does.

[B]

I think, like it has me. Like it limits me every day. Doesn't mean my life sucks. It doesn't mean that I can't work around or adapt. But you know, it does stop me from doing certain things and I've learned to do other things. Sometimes it gets the best of me.

[A]

Yeah. Yeah. Oh, I love this. This was on dating. And here's the quote. I tell myself again and again that people who can't see my self worth don't make me worthless. I learned to accept that there will always be those who can't imagine having a partner with ms, a partner like me. And that's fine. It doesn't make me less than. It makes them not enough. I'm like, yes. It's like, yeah, yeah. It's not about us, it's about them. That's a them problem, not a me problem.

[B]

That's something where I feel grateful for my upbringing, where my parents instilled a lot of confidence and self worth in me. I was not born with this disability. I acquired it. And I think having that sense, that strong sense of selfworth and confidence before Ms. Entered the picture and rattled me has in a lot of ways saved me.

[A]

Yeah.

[C]

That, that chapter that Brooke is talking about, there's a few comments that were made to you. You, you reference your then boyfriend and, and his father's. Some of his hesitations.

[B]

Yeah.

[C]

About you. And that hit me to the core. It's in was like that you weren't good enough for his son. That like, who would want someone with Ms. Or what. What is he getting into? You know, like I'm, I'm saving him from something. And like that hit me to the core and I just, it rattled me so much.

[B]

Effy, did it rattle you because it was relatable or because it was surprising? Because for me, like it was. I was so naive. I was such a baby. It surprised, it shocked me that anyone would think that I wasn't good enough to date their son because I had Ms. Of course. I've learned so much since then, but I'm like, what about that rattled you, Jodi?

[C]

I think it was the relating part. I think you talk a lot about, you know, like you're upbringing about self worth, self worth and things like that. And I think so much of my own self worth has been eroded because of my physical limitations. And so reading that really hit me hard because that's probably a lot of my own internal dialogue that I'm not, I'm not worthy of it. So I, it was eye opening reading that and then reading your, your thoughts after that.

[B]

It was my like cocky 25 year old self of just being like, just thinking I was a prize and not, you know, I wasn't very disabled at that point. My symptoms were invisible. Yeah, I don't know, I don't know what to say to people who, when, when they are already like before they're diagnosed with ms, have a shaky sense of self therapy, I guess because Ms. Doesn't change your worth. It doesn't.

[A]

Well, it just so happens that I took this quote as well and the message here for me reading this, I want to say to anybody who's a parent, friend, spouse, co worker of somebody who has ms, this was on your parents strategy to make you feel worthy no matter the circumstance. You said, when people tell me they don't know how I do it, how I survive and even thrive despite ms, the answer to me lies in my inherent sense of self worth. When you are sick or disabled, the world tries to tell you a different story. The world tries to limit you, to make you smile. I was taught to never hide my sparkle. My parents deluded faith in me has given me the diluted faith I've needed in myself. And I'm like so good. Your parents, I love your parents. This, I fell in love with them totally. Like totally.

[B]

I am, I am grateful for that for sure. Yeah. I don't, I don't. It has saved me just feeling, you know, I know that I have, I'm coming into or came into Ms. With a degree of privilege. You know, I've already, I am, yeah. A degree of privilege that allowed me to feel that entitled to take up space, to have a seat at the table, to be, to be in the room. And so I hope that I can empower other people to feel that way as well. And you know, it's like when we are inclined to hide our Ms. Or to deny that we are disabled, we are inadvertently contributing to that narrative. It takes people to be able to say I have Ms. And I am disabled and I deserve to be here, you know, not I deserve to be here, but only because I can't tell you that I am impacted or need accommodations or have this disability. It's hard and, but the more people that do that, the more, the easier, the more things will change. And I want to just say while you're thinking on that, Brooke, like you guys do that, you know, you, Brooke and Jody both put yourselves out there and that takes confidence and that helps other people see themselves and take up space and feel valued as well. So thank you also for what you contribute to this community.

[A]

You've certainly inspired us to do that. I mean, you pretty much, I mean you've set the standard for a lot of other, I know it's a dirty word, influencers, advocates to give us the guts to say, if she can do it, I can do it.

[B]

It's very generous, but it's like, it's generous of you to say that, but it is like self fulfilling. Right. If I was the only one out here screaming into the void, it, it's useless. We need the community. We need more voices and, and more people saying this kind of stuff.

[A]

Yeah. Jody, you have anything else you want to. I mean, honestly, we, we seriously, we could go on forever.

[B]

I'm really excited to like meet people at signings and readings and talk about the book and you know, if anyone's doing book clubs that if you're doing a virtual book club, it'd be cool to hop in for that. Also my publicist says I need to write a book club guide, so that's something that might happen.

[A]

Wouldn't it be cool if it was a book club that didn't have a single person who had Ms. In it?

[B]

Oh, wow.

[A]

Think about that.

[B]

How would we make that happen? We don't know the, what a learning.

[A]

Experience that would be.

[B]

I have had like this experience where I have heard from people with no point of reference for Ms. A friend of mine had given the book to her uncle, a guy in his 70s, knew nothing about MS, wasn't even going to read the book, but he was like, oh, my niece gave it to me, it's her friend, I'll just skim through it. And he ended up devouring it. Sent the nicest note of just how much it impacted him. And so that was really, that was.

[A]

Really cool because that is cool.

[B]

Yeah. It is nice to think that it might help people think about disability a little bit differently, but also for people with Ms. To be like, feel seen for sure.

[A]

Right, right. I think anybody who ever thought they knew who Ardra Shepard was needs to read the book so they can really see who you are. Not that you're everything that you don't put out there isn't real. But I think the depth of this book, it. I feel like I know you so much better. I, I have even more respect and I think you're even more hilarious. And I think, you know, and like I said, the kind of unveiling of who your husband was and is through this whole story, it's a lot. It is. It's a love story, too. Like, it's all the things. Like, it could be a movie. It seriously could be a movie.

[B]

I love that you say that. I definitely did try to write it with that kind of storytelling in mind. I've worked on a couple of development deals of turning the blog or a version of, like, based on the story into a television show. It's a tough market out there right now, but that experience of writing with a couple of different production companies taught me a lot about storytelling. And really, when I was writing it, I almost thought of myself as a character. Like, I almost had this, like, out of body kind of experience. Let me write it in a way that I hoped was going to be entertaining and funny and engaging because, I mean, who, like, otherwise, who wants to read a book about ms?

[A]

Right? Right. And that's the thing. It's not just about Ms. So if anybody is shying away from this book because it's a book about somebody who has ms, it's so much more than that. There's travel and intrigue and just, you know, other storylines woven within the Ms. Story. You know, it's not some, oh, my God, this chick has Ms. It's not like that. Oh, so it's funny, right?

[B]

You guys laughed out loud, right?

[A]

Oh, my gosh. I. I saw so much of myself in you. We have a very, very similar sense of humor. So many times I said, that's exactly what I would have said. That's exactly what I would have done, you know? Yeah. Yeah. So.

[B]

But I think that's cool, too, because I think it's like, I don't think that my story is that exceptional. I think a lot of us handle Ms. The way I do. Like, maybe what's unusual is that I got to put it in a book, but I don't think I'm like, this unicorn who has secrets about Ms. I think I'm just able to articulate what so many of us are going through.

[A]

Yeah.

[C]

You know, Arjer, reading the book, one. One thing that I really loved, it's what Brooke said. It's not. It's not like, here's 25 years of AR's life. Like, every single detail. Like, you weave in and out. Like, there's a. There's. It's in a chronological order, but there's snippets. And there might be, like, a few years Missing and stuff like that. And I have to say that your book touched me, like, reading it, it actually has inspired me. My husband, for a long time has said that I should write my story. And I have to say, after reading your book, I started making my own little notes and writing things. Like, what would a chapter look like?

[B]

Like, I love that. Yeah, that makes me so proud. I love that. Totally do it. I will say, from, like, a technical standpoint, writing a blog for so many years really helped me figure out my voice. It helped me understand what readers connected with it. It just helped me get better at storytelling. And before that, just writing a diary. Like, I think you can see them behind me. Like, I couldn't have written this book if I hadn't kept a diary. So that would be my. My other tip for you is. But, yeah, so, like, do it. That's. There's so much value in that, Jody. That'd be really exciting.

[C]

No, thank you for. Thank you for the inspiration and the tips. And I know I'm not the only one that's going to feel like that, because I. I think, you know, we all might have the same diagnosis, but we all have a different story, and we all have. We all have a voice. And I think so much of what you've done with your blogs and the book and just your Instagram posts, you have given the we'll say the disabled community or the chronically ill community a voice. And I think it. I think it means so much because our. Whether it's our own internal dialogue or what society tells us around that. That we don't have a voice and we're not worth taking up space because we don't look like other people or we don't. Our bodies don't work, you know, whether visible or invisible, they don't work like everyone else. So I think what. What you offer in so many different ways is inspiration for so many of us to. To not settle.

[B]

Yeah. Do not settle. I love that. Thank you, Jody. You know, it's not that unusual for bodies to fall apart and fail us. My launch party, the book launch was, like, such a big deal for me. It was such an exciting night. My family flew in from the East Coast. It was just kind of a dream come true. My best friend had Covid and couldn't be there. My husband had the flu, and I wouldn't let him come in the apartment. He had to stay at a hotel so that he wouldn't get me sick. Those two key people in my life could not be there because their bodies had acted like bodies, you know, and like they couldn't have guilt about that. They couldn't be there. He, like she had Covid. He had the flu. I'm thinking like, if this was somebody who couldn't make some important event because Ms. Like the guilt and we would give ourselves when just like, you know what happens to everyone and sometimes you miss stuff and life goes on and, you know, it's still. It's okay.

[A]

So true. So true. Well, Ardra, we are going to. And of course I mentioned the name of the book in the intro Philosophy Fall Osophy. So good. So good. This book. That's the other thing. This is not, you know, this book is not this thick. It's like between 250 and 300 pages. Like, it's, it's. But it's like the best two and a half days I had of reading a book in the longest time. Seriously, I was really on the edge of my seat in the. In the best way, not in a scary way. And like, oh, give me more, give me more kind of way. I kind of didn't want it to end, but it did. But I get to talk to the author. How cool is that?

[B]

Amazing.

[A]

We're gonna have links to your blog, your everything, all your social media. We're gonna have all of that. We'll have direct links to the book, of course, but we can't. Thank you enough for coming on. Jody and I both are just like, thrilled beyond. And you deserve all the accolades. Can't wait to see what awards you might get for this because if you're not on some list somewhere, you should be. And thanks for having the balls to do it.

[B]

I mean, honestly, it's kind of a dream come true. I do want to add that it has been very delightful to work with my publisher who is keen on making the book accessible to everyone. So there is a large print version available also when you're ordering. And I'm going to be recording the audiobook actually starting later this week, so that should be available. I don't know how long they take to get it edited and stuff, but. But the audiobook is coming. If you're not in Canada or you or the United States, we are still working on international rights, so hopefully that will be coming soon. But you can also get it on E Reader. Of course.

[A]

I am so glad. That was one of my questions. Is this going to be on audible anytime soon or, you know, just because that's typically how I listen to things. That's the other thing. This is the first book that I've read that not listened to in years.

[B]

Oh, my God.

[C]

Amazing.

[B]

Thank you.

[A]

Read a book. I can't, like, be doing laundry and everything else. Well, I have to actually sit down in one spot for. That's why I said to my husband, okay, leave me alone. I have to concentrate. And I loved it. I loved it. But I love the fact that the Audible will be available. That's great.

[B]

Thank you.

[A]

And are you. Are you record. Is it going to be in your own voice?

[B]

It will be awesome.

[A]

That's awesome. Awesome. All right, well, anything else, Jody, from you?

[C]

No, I just. I love the fact that you're doing the Audible book and it will be in your own voice. Because I know when I was reading it, I almost felt like you are in my head, but, like, just to. To hear you say your own words, it packs such a. It packs more of a punch when it's your own.

[B]

So much for saying that. Thank you. Yeah, I don't want to trash.

[A]

Thank you so much. Good luck, you know, going forward with all of your endeavors. And, you know, who knows, maybe somewhere down the road there'll be another book. I don't know.

[B]

Oh, God. More stuff would have to happen.

[A]

No. Anyway, thank you so much. The. The podcast is thrilled. I can't wait. How about it, Jody? I can't wait for our listeners.

[C]

No, I know.

[A]

I think.

[C]

I think so.

[A]

Read the book.

[C]

Top listener. Oh, yeah, for sure.

[B]

Thank you guys so much. Thank you for your enthusiasm and for reading it. I really appreciate it. It means so much to hear from. From inside the community. It's. It's really been lovely. Thank you.

[A]

Thank you so, so much. Thanks for tuning in to the MSGYM podcast. You can find information on the Ms. Gym on YouTube, Facebook, Instagram, [e-mail].