← Living Well with Multiple Sclerosis
Living Well with Multiple Sclerosis
Finding joy while living with MS | Ardra Shephard (Tripping On Air) | S8E10
00:17:17
Loading summary
Transcript33 lines
- [00:00]
A
But I do think a lot of people go through that process of, like, what did I do to make this happen? Like, did I drink too much? Was I eating the wrong thing? You know? And I mean, it doesn't help that there, there are a certain. There is a group of people that do believe that we do manifest illness and bring these things on ourselves or that it is kind of God's punishment. And so, you know, I was 23 and it was a lot to process.
- [00:35]
B
Welcome to Living well with Ms. This show comes to you from Overcoming ms, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life. Through the Overcoming Ms. Program, we interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. Receive monthly tips and ideas about Living well with Ms. By signing up for our newsletter@overcomingms.org newsletter and now let's meet our guest.
- [01:12]
C
Welcome to the latest edition of the Living well with Ms. Podcast. Joining me on this edition is Adra shepherd, also known as trippingonair, who is going to discuss her work and her new book, Philosophy. So to start off with Adri, welcome.
- [01:27]
A
Firstly, thank you so much for having me. I'm excited to be here and to start.
- [01:32]
C
Could you introduce yourself, your work and your Ms. Journey?
- [01:37]
A
Sure. I, like you said, I'm Ardra Shepherd. I live in Toronto, Canada. I was diagnosed with Ms. In 2001, which feels like a million years ago. I started blogging about my Ms. When my symptoms started to become less invisible and more apparent and I started feeling like, you know, people on the street would ask me, what happened to you? Why are you walking like that? And anyway, I started the blog called Tripping on air. That was 10 years ago, and I guess a book was the natural evolution of that. It's. It's a memoir, so it talks about my experience with Ms. It's funny. Yeah. Philosophy, it's a play on words. So, you know, I fall down a lot and hopefully I've learned a few things along the way.
- [02:27]
C
That's when, when I first came across you, I think the, the thing that stuck in my head was tripping on air. I think for people with ms, if you've got foot drop and things like that, it was very like, yeah, okay, I can. I can trip on nothing.
- [02:39]
A
Yeah, we don't need physical obstacles to trip over. We just go down.
- [02:45]
C
So could you tell us a bit more about tripping on it? And why did you decide to disclose your diagnosis so publicly and put your experiences out there on your blog.
- [02:55]
A
Yeah, it's really interesting because I did share my diagnosis when I was first diagnosed, and that was a learning curve also because it did limit me in some ways. I did face some stigma, some lost opportunities. And then for a while, I started keeping it a secret. And then when I started blogging, it was like my Ms. Was changing and becoming more apparent and I couldn't really keep it a secret anymore. I was getting asked these questions. And so writing the blog was a way for me to kind of control the narrative or at least put my own version of things out there, because it was really startling to me to have kind of lived my way and been experienced by the rest of the world one way, and then to suddenly feel like strangers were interpreting me as something to pity and feel sorry for and something that was like, broken and wrong. Like when somebody asks you what's wrong? What happened to you? Repeatedly, like when you get that every time you leave the house with a mobility aid, it can get in your head. And so I. I kind of wanted to set the record straight, if that makes sense.
- [04:12]
C
So your book. So you've recently written the book Philosophy My Trip Through Life with Ms. So again, yeah. Yeah. So firstly, I'd just like to say it's. It's available, I believe, in. In the US and Canada in paper form or presumably E Reader as well. And worldwide. On Is it audiobook and is it E Reader as well?
- [04:37]
A
You can get it on in paperback, like in bookstores in Canada and North America. Of course, you can order it online. You can ask your local independent bookstore to order it. It's available on E Reader. It's the audiobook just came out a couple of weeks ago. Outside of Canada, in the US you can order it on Amazon. It might take you a while. You might have better luck. Luck with an E Reader or the audiobook?
- [05:05]
C
Yeah, certainly. It's certainly available on audiobook, definitely. So could you tell us a bit about the process of writing a book and what. What do you think people will get from reading your book or listening to your book?
- [05:17]
A
Well, okay, I'll answer those in reverse. I think what I hope that people will get people with ms, maybe will laugh and see themselves and find a relatable story. Story. I really wanted to communicate the message that a difficult life doesn't have to be a joyless life. I don't sugarcoat how hard Ms. Is. It's really effing hard. And I think, you know, other books that I have seen and read about chronic illness or Ms. In particular, sometimes don't tell that side of the story. So it's very real. It's very vulnerable and raw. But at the end of the day, I also want to make the point that, like, life is hard, it can still be beautiful. I think that's true for everyone. We are all going through something, whether we have Ms. Or not. In terms of the process, I've always been a reader. I've always kept a diary. There's no way I could have written this memoir that spans, like, 20 years of having Ms. If I didn't have diaries that were, like, spilling all the dirt of what I was feeling at every point throughout this. This process of having Ms. It's funny, like, you can't really trust your memory. We really do remember things differently. And so that was really interesting for me to go back and read those diaries from 20 years ago and just see in my own words, like, what I was going through and what I was feeling at the time.
- [06:44]
C
So it's. You mentioned the humor, so it's. It's a funny book. To give our listeners a taste, would it be possible for you to read an excerpt so we get a feel for the star of the book?
- [06:57]
A
Um, I'm gonna read the first chapter for you. Cause it's not too long, and it. It's weird when you're like, I'm funny, and you tell people that. Right? Prove it is what I feel like is happening right now. Okay, give me a moment. Chapter one. Dear Satan, I don't exactly believe in witchcraft, but I'm open to a free consultation. I light more candles than is safe, considering the fake cobwebs that overwhelm my already cobwebby apartment. My girlfriends sit in a circle on the living room floor, laughing and chewing on candy necklaces. They're dressed in miniskirts, high heels, and heavy makeup, Their cowboy hats and cat ear headbands barely qualifying their skimpy outfits as costumes. It's Halloween, and we're about to hit the club where the bartender works. But first we pre game over several bottles of red wine, not caring that it's a Tuesday. I dim the lights and join the coven, opening a book of hocus pocus incantations I picked up. I don't even know where. I look for spells that might fix my life like double, double toil and trouble Release me from the corporate hustle. In the cauldron's bubbling moan boil and bake my student loan fire burn in all its splendor. Why am I sleeping with a bartender lizard's leg and Owlet's wing. Somebody clean my apartment. It's not our intention to ask the underworld for anything truly evil. We're just looking for a few shortcuts that will make us skinny, improve our credit, and give our enemies acne. Unfortunately, the book of spells turns out to be useless. All we can find are some Glinda, the Good Witch Meditations that promise to release negativity through the power of visualization. I definitely bought it at an Indigo in the suburbs and not on the Dark Web. We do a round of shots and make up our own spells. We give up on potions because all I have in my pantry is table salt and a half eaten box of Fruit Loops. Plus, I don't have a cauldron. I don't even have a soup pot. In fact, I only have one pot and it's just big enough to heat up a can of Zoodles. Never mind that it's not even clean right now. I don't own a dishwasher. I could ask my neighbors if they have any Eye of Newtown, but I wouldn't know where to find a lizard's leg. I'm not sure what an owlet is, but I'm pretty sure it's endangered. My friends and I may not be competent witches, but intent matters and our objectives weren't exactly innocent. A few weeks later, I will think back to that drunken night and consider that my attempted conversation with the underworld and the shady deals I tried to strike with the Prince of Darkness somehow led to my diagnosis. Random shit doesn't just happen. Bad things happen to bitchy people. And it couldn't just have been terrible luck that I'd gotten Ms. There had to have been a reason. And for a few years, I will believe the reason is me.
- [10:19]
C
Wow, that was very good. I've not heard anyone say that potential Satanism was a cause of their.
- [10:27]
A
It's definitely not. Can Val. I can validate that it's not, but I do think a lot of people go through that process of like, what did I do to make this happen? Like, did I drink too much? Was I eating the wrong thing? You know, and I mean, it doesn't help that there. There are a certain. There is a group of people that do believe that we do manifest illness and bring these things on ourselves or that it is kind of God's punishment. And so, you know, I was 23 and it was a lot to process and I. I definitely had some diluted ideas of, you know, I'm not sure I really seriously thought that that was happening, but it did go through my mind of like, what did I do to make this happen to me?
- [11:18]
C
So you're also a podcaster and you have the Tripping on Air podcast with Alex Hajar.
- [11:26]
A
Yes.
- [11:27]
C
So what have you learned from that experience? From podcasting?
- [11:32]
A
Podcasting is really different than writing, and I was really nervous to get into it because writing, of course, is. So it lets you take your time and articulate what you really want to say. Or as podcasting is less polished and more off the cuff. So I was nervous about that. I really liked working with Alex. His wife has ms, and so that show allows us to kind of explore the impact of Ms. On the person living with it, but also on relationships, on a marriage, on the family, that kind of thing. It's been really great. Yeah. I don't know exactly what I've learned, except that I really have have enjoyed it.
- [12:15]
C
What. What would be some favorite episodes?
- [12:18]
A
I think one of our most popular episodes actually is one that we did on smoldering ms, which is a really hot topic in the Ms. Space right now. We interviewed my Dr. Ji Won, who's the head of the Barlow Ms. Center here in Toronto, really explaining that kind of confounding phenomenon that a lot of us with progressive Ms. Are experiencing of like, why am I getting worse even though I'm not having relapses? That was like an information heavy episode that I really liked. Another one about dating with Ms. I haven't dated in a long time, but I know it's on a lot of people's minds. And we interviewed my friend Darcy, who is a full time wheelchair user, when she met the love of her life. And I felt like that was a really important story to share. Um, there's lots of gift guide episodes which are really fun. They're all great. Check it out.
- [13:12]
C
And. And the other thing that you're connects with is fashion. So fashion's a big part of your identity. So could you tell us a bit about your TV show and the increasingly available adaptive and inclusive fashion and beauty products?
- [13:31]
A
Absolutely. So when I again first started needing a mobility aid, I looked for stylish examples of people my age using mobility aids. This was like 2017. So the landscape has changed. You can find these communities now on social media, but really almost nothing in 2017. And I pitched a show here in Canada called Fashion Dis, which is a makeover series that is completely dedicated to people with disabilities. It highlights adaptive and inclusive fashion and beauty brands and just like celebrates people in a way that we don't always see the disability community represented on screen. There's no like B roll footage and sad soundtrack, hospital trauma kind of stuff. It's all just about how we use fashion to celebrate our identities, our personalities, our creativity, and how that should be available to everyone.
- [14:35]
C
And just as a final question, what would be your biggest lesson? I mean, you. You've spoken to a lot of people with a podcast, a big online presence. So what would be your biggest lessons or takeaways from living with Ms. And all that you've learned and being part of the disability community?
- [14:56]
A
I mean, I think that's kind of the message of the book. Philosophy, of course, is a play on words of philosophy. They sound the same when I say them.
- [15:07]
C
I'll say, so I'd say, well, it could be philosophy, philosophy, philosophy, philosophy and philosophy.
- [15:14]
A
Yeah, there's so many lessons, it's hard to narrow it down to one. If I did, it would be the one that I mentioned. A difficult life doesn't have to be a joyless life. I think it's important to be intentional about how we live and to take some control, to create joy, to create opportunities, to invest in relationships. And also that adapting to Ms. Doesn't mean giving in. That it's not. It doesn't mean that you have failed. I think that's a tough message for us as patients to, to absorb when we really are kind of taught to fought fight this disease. And we're not always given the tools to. To adapt, you know, to manage and control what you can and adapt to what you can't.
- [16:12]
C
Okay with that. I'd like to thank you very much for joining us. Sadra Shepard.
- [16:16]
A
Thank you for having me.
- [16:19]
B
Thank you for listening to this episode of Living well with Ms. Please check out this episode's show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Mav Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share, email us@podcastvercomingms.org we'd love to hear from you. The Living Mob with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community. Community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.