S8E10: Finding joy while living with MS Ardra Shephard (Tripping On Air)

Overcoming MS (00:01)

Welcome to latest edition of the Living World with MS podcast. Joining me on this edition is Ardra Shepherd, also known as Tripping On Air, who is going to discuss her work and her new book, Philosophy, So to start off with Ardra, welcome firstly.

 

Ardra (00:23)

Thank you so much for having me. I’m excited to be here.

 

Overcoming MS (00:26)

And to start with, could you introduce yourself, your work and your MS journey?

 

Ardra (00:32)

Sure, 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 fell down a lot. And hopefully I’ve learned a few things along the way.

 

Overcoming MS (01:24)

That’s when I first came across you, I think 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, yeah, I can trip on nothing.

 

Ardra (01:37)

Yeah, we don’t need physical obstacles to trip over. We just go down.

 

Overcoming MS (01:40)

So could you tell us bit more about tripping on it and why do you decide to disclose your diagnosis so publicly and put your experiences out there on your blog?

 

Ardra (01:55)

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. 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 want I kind of wanted to set the record straight, if that makes sense.

 

Overcoming MS (03:13)

So your book, so you’ve recently written a book, Fallosophy, my trip through life with MS. So again, yeah, mention the tripping. So firstly, I’d just like to say it’s available, I believe in the US and Canada in paper form or presumably e-reader as well and worldwide.

 

Ardra (03:24)

Yeah.

 

Overcoming MS (03:41)

Is it audiobook and is it e-reader as well?

 

Ardra (03:44)

Yes, 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. The audio book just came out a couple of weeks ago. Outside of Canada and the US, you can order it on Amazon. It might take you a while. You might have better luck with an e-reader or the audio book.

 

Overcoming MS (04:13)

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 do you think people will get from reading a book or listening to your book?

 

Ardra (04:26)

I think what I hope that people will get people with MS maybe will laugh and see themselves and find a relatable story. I really wanted to communicate the message that a difficult life doesn’t have to be a joyless life. I don’t sugar coat 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 what I was going through and what I was feeling at the time.

 

Overcoming MS (06:00)

So you mentioned the humour, so it’s a funny book. So to give our listeners a taste, would it be possible for you to read an excerpt so we can get a feel for the style of the book?

 

Ardra (06:13)

 I’m gonna read the first chapter for you, because it’s not too long. And it’s weird when you’re like, I’m funny, and you tell people that, right? Like, prove it is what I feel like is happening right now. Okay, give me a moment.

 

Overcoming MS (06:25)

Mm-hmm.

Ardra (06:43)

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 mini skirts, 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 pregame 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 fouble double toil and trouble, release me from the corporate hustle. In the cauldrons 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 Froot 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 newt, 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.

 

Overcoming MS (09:50)

Wow, I know that was very good. I’ve not heard anyone say that potential Satanism was a cause of their condition.

 

Ardra (09:59)

It’s definitely not. 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? And I mean, it doesn’t help that there is a group of people that do believe that.

 

Overcoming MS (10:09)

Mmm. Yeah, why me?

 

Ardra (10:25)

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 definitely had some deluded 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?

 

Overcoming MS (10:49)

So you’re also a podcaster and you have the Tripping On Air podcast with Alex Hadjar. So what have you learnt from that experience from podcasting?

 

Ardra (10:54)

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 wanna say whereas 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 enjoyed it.

 

Overcoming MS (11:50)

So what would be some favourite episodes?

 

Ardra (11:55)

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 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 or experience 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. 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. There’s lots of gift guide episodes, which are really fun. They’re all great. Check it out.

 

Overcoming MS (12:52)

And the other thing that you’re connected 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?

 

Ardra (13:13)

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.

 

Overcoming MS (14:21)

And just as a final question, what would be your biggest lesson? mean, you’ve spoken to a lot of people with podcasts, 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?

 

Ardra (14:41)

I mean, I think that’s kind of the message of the book. Falllosophy, of course, is a play on words of philosophy. They sound the same when I say them. Philosophy, Fallosophy. 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.

 

Overcoming MS (14:54)

I’ll say, so I’d say, well it could be philosophy. Fallosophy and philosophy, yeah.

 

Ardra (15:10)

I think it’s important to be intentional about how we live and to take some control to create joy, 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 vabsorb when we really are kind of taught to fight this disease and we’re not always given the tools to adapt, know, to manage and control what you can and adapt to what you can’t.

 

Overcoming MS (15:59)

Okay, with that, I’d like to thank you very much for joining us. Ardra Shepard.

 

Ardra (16:04)

Thank you for having me.