'Tripping on Air,' My Life With Multiple Sclerosis
Reviewed by Brunilda Nazario on June 21, 2019
Video Transcript
[MUSIC PLAYING]
ARDRA SHEPHARD: My name is Ardra
Shephard, and I have MS,
but MS doesn't have me.
That's bullshit.
People love to say that,
and it's not true at all.
MS totally has me,
and I do my best to not let
it rule my days and nights,
but sometimes there's nothing
you can do about it.
[MUSIC PLAYING]
I first had some pain in my left eye, and I thought I was having migraines. I went to a walk-in clinic, and the doctor said you know take some time off. You're having migraines.
[MUSIC PLAYING]
Maybe about two weeks after that, I started to have blurred vision, and I knew that wasn't a migraine. It was like very, very blurry. And so I had a battery of tests. I didn't think anything was really wrong. For some reason, I thought I just needed some antibiotics. The next day, I saw a neurologist. He said, there was a 50% chance you have MS. I freaked out. I didn't know anything about MS, but I thought my life was over.
[MUSIC PLAYING]
A month later, I started having sensory issues, numbness, tingling, and problems with mobility, and I was diagnosed very quickly after that. I really lost my mind. It was crazy. MS is a chronic progressive disease that affects the brain, the spinal cord, and the optic nerve.
[MUSIC PLAYING]
I can't embrace MS as a part of my identity, but accept it, I must. Look, I'm almost glad that I can't see myself walking, because I feel like it's just gross, like Frankensteinian. OK, yep.
INTERVIEWER: If it's possible, you could take the long way around the chair. ARDRA SHEPHARD: It's definitely like way more nerve wracking for me to walk on camera than speak on camera. It's like so self-conscious. I mean, I can try. I'm probably going to hate it. But-- fair enough. Don't make me do it too many times.
CREW: Deal. This is the last time, I promise.
ARDRA SHEPHARD: I named my blog Tripping on Air, because before I was using mobility aids, I had a reputation for being kind of clumsy for falling up the stairs, for tripping for no reason, tripping on air. I swore I would never write a blog. Like it seemed like kind of a gross idea to me to kind of like blab about the most personal parts of my life, but I don't know. Here we are.
Never say never, I guess I started blogging because there came a point when I started to me mobility aids. Felt like people were really feeling sorry for me, like I was a victim, and that wasn't the story that I wanted to tell. When I started my blog, I had no intention of necessarily being an advocate for MS. Like nobody grows up and wants to be a spokesperson for a crappy disease.
[MUSIC PLAYING]
I feel sometimes like I'm a walking billboard. Every time I leave the house, and somebody asks me what's wrong with me, like every Uber I ever get into is like what happened? And because I'm young, they think I have some cool sporting injury that I'm recovering from, and it's like, just because I use a mobility aid doesn't mean I want to talk to you about it, random stranger.
Imagine the worst thing that ever happened to you, and then most days, some rando asks you to tell them about it. It's not OK.
[MUSIC PLAYING]
I wrote a blog post that's pretty popular called "Honey, I Peed the Bed." , The post is about the night where we're like up at 3:00 in the morning again, washing the sheets, and I'm just crying and devastated and humiliated. And my husband, who's such a champ, he's, like I will pee the bed, too, if that'll make you feel better, and it definitely would not have made me feel better. That's not the kind of relationship we're in.
But what did make me feel better was like finding and embracing a solution and like, that's Cathy. It was scarier than it needed to be because it revolutionized my life. We need to celebrate these things that are tools, like eyeglasses, more than vilifying them as like the things that disable us. They're not. They're actually tools that enable us.
When I started using a cane, I felt really self-conscious about it. I was really embarrassed about it. I felt like MS was trying to rob me of my right to feel pretty. So that was something I needed to take back in a way. I first started using it when we were traveling to help me get through long days.
And I remember a trip through France. And when I look at those pictures, all I remember is how in every shot I was hiding my cane. I definitely am praying to the gods of balance that I don't fall over here. My cane is hidden from the shot in the vineyards. I'm like trying to get braver, but it's still -- it's like-- it's a thing.
So I looked for role models, for fashionable people that used canes. And I couldn't find them. And I realized that I could be that example for other people. And that's where social media can be kind of awesome. One day when I was first starting to use a cane, I saw this guy, he was walking towards me, and he also was using a cane. And I don't know if he had MS or not, but we just kind of gave each other a knowing look.
I thought about this guy who I nicknamed in my head Fedora, because he looked cool, and he had a cane, and maybe I also looked cool. And it was kind of like this light bulb -- and there it is -- moment for me of realizing that I could feel good with a mobility aid if I could see other examples of people who also looked good.
Last summer, I arranged to have a super glam photo shoot with a stylist and a professional fashion photographer, because I wanted to create beautiful images of me done up as best as I could with my mobility aids for myself, but also so that I could share them on social media and sort of rally this community of people. We need to see ourselves represented.
Part of the language around illness and disease is that you have to be a warrior, and it's like, who am I fighting with? I can't use all this negative energy to be angry and be pissed at my own body all the time. It's like not healthy, and it doesn't make it better.
[MUSIC PLAYING]
I've said that even if my body breaks, I won't be broken. I won't. And I hope that's true. When I was diagnosed, I thought I could never handle that. And now I'm here, and I realize, OK, I can deal with this. I can do that. However worse this is going to get, maybe I'm tougher than I think.
People will ask me, you know, what would you tell somebody who's newly diagnosed, or what have you learned? And I feel like the answer that they're looking for is it's OK. It's better. It's not as bad as they think, that kind of stuff. But in another way, I feel like, yeah, I was right to freak out. It is a tough disease.
I'm going to continue to be my badass self. I'm, like, bossy, and I'm not going to let the world tell me what disability is supposed to be and what it's supposed to look like. I don't accept that. So this is my version of it, and I guess I'm just imposing it upon the world.
[MUSIC PLAYING]
[MUSIC PLAYING]
I first had some pain in my left eye, and I thought I was having migraines. I went to a walk-in clinic, and the doctor said you know take some time off. You're having migraines.
[MUSIC PLAYING]
Maybe about two weeks after that, I started to have blurred vision, and I knew that wasn't a migraine. It was like very, very blurry. And so I had a battery of tests. I didn't think anything was really wrong. For some reason, I thought I just needed some antibiotics. The next day, I saw a neurologist. He said, there was a 50% chance you have MS. I freaked out. I didn't know anything about MS, but I thought my life was over.
[MUSIC PLAYING]
A month later, I started having sensory issues, numbness, tingling, and problems with mobility, and I was diagnosed very quickly after that. I really lost my mind. It was crazy. MS is a chronic progressive disease that affects the brain, the spinal cord, and the optic nerve.
[MUSIC PLAYING]
I can't embrace MS as a part of my identity, but accept it, I must. Look, I'm almost glad that I can't see myself walking, because I feel like it's just gross, like Frankensteinian. OK, yep.
INTERVIEWER: If it's possible, you could take the long way around the chair. ARDRA SHEPHARD: It's definitely like way more nerve wracking for me to walk on camera than speak on camera. It's like so self-conscious. I mean, I can try. I'm probably going to hate it. But-- fair enough. Don't make me do it too many times.
CREW: Deal. This is the last time, I promise.
ARDRA SHEPHARD: I named my blog Tripping on Air, because before I was using mobility aids, I had a reputation for being kind of clumsy for falling up the stairs, for tripping for no reason, tripping on air. I swore I would never write a blog. Like it seemed like kind of a gross idea to me to kind of like blab about the most personal parts of my life, but I don't know. Here we are.
Never say never, I guess I started blogging because there came a point when I started to me mobility aids. Felt like people were really feeling sorry for me, like I was a victim, and that wasn't the story that I wanted to tell. When I started my blog, I had no intention of necessarily being an advocate for MS. Like nobody grows up and wants to be a spokesperson for a crappy disease.
[MUSIC PLAYING]
I feel sometimes like I'm a walking billboard. Every time I leave the house, and somebody asks me what's wrong with me, like every Uber I ever get into is like what happened? And because I'm young, they think I have some cool sporting injury that I'm recovering from, and it's like, just because I use a mobility aid doesn't mean I want to talk to you about it, random stranger.
Imagine the worst thing that ever happened to you, and then most days, some rando asks you to tell them about it. It's not OK.
[MUSIC PLAYING]
I wrote a blog post that's pretty popular called "Honey, I Peed the Bed." , The post is about the night where we're like up at 3:00 in the morning again, washing the sheets, and I'm just crying and devastated and humiliated. And my husband, who's such a champ, he's, like I will pee the bed, too, if that'll make you feel better, and it definitely would not have made me feel better. That's not the kind of relationship we're in.
But what did make me feel better was like finding and embracing a solution and like, that's Cathy. It was scarier than it needed to be because it revolutionized my life. We need to celebrate these things that are tools, like eyeglasses, more than vilifying them as like the things that disable us. They're not. They're actually tools that enable us.
When I started using a cane, I felt really self-conscious about it. I was really embarrassed about it. I felt like MS was trying to rob me of my right to feel pretty. So that was something I needed to take back in a way. I first started using it when we were traveling to help me get through long days.
And I remember a trip through France. And when I look at those pictures, all I remember is how in every shot I was hiding my cane. I definitely am praying to the gods of balance that I don't fall over here. My cane is hidden from the shot in the vineyards. I'm like trying to get braver, but it's still -- it's like-- it's a thing.
So I looked for role models, for fashionable people that used canes. And I couldn't find them. And I realized that I could be that example for other people. And that's where social media can be kind of awesome. One day when I was first starting to use a cane, I saw this guy, he was walking towards me, and he also was using a cane. And I don't know if he had MS or not, but we just kind of gave each other a knowing look.
I thought about this guy who I nicknamed in my head Fedora, because he looked cool, and he had a cane, and maybe I also looked cool. And it was kind of like this light bulb -- and there it is -- moment for me of realizing that I could feel good with a mobility aid if I could see other examples of people who also looked good.
Last summer, I arranged to have a super glam photo shoot with a stylist and a professional fashion photographer, because I wanted to create beautiful images of me done up as best as I could with my mobility aids for myself, but also so that I could share them on social media and sort of rally this community of people. We need to see ourselves represented.
Part of the language around illness and disease is that you have to be a warrior, and it's like, who am I fighting with? I can't use all this negative energy to be angry and be pissed at my own body all the time. It's like not healthy, and it doesn't make it better.
[MUSIC PLAYING]
I've said that even if my body breaks, I won't be broken. I won't. And I hope that's true. When I was diagnosed, I thought I could never handle that. And now I'm here, and I realize, OK, I can deal with this. I can do that. However worse this is going to get, maybe I'm tougher than I think.
People will ask me, you know, what would you tell somebody who's newly diagnosed, or what have you learned? And I feel like the answer that they're looking for is it's OK. It's better. It's not as bad as they think, that kind of stuff. But in another way, I feel like, yeah, I was right to freak out. It is a tough disease.
I'm going to continue to be my badass self. I'm, like, bossy, and I'm not going to let the world tell me what disability is supposed to be and what it's supposed to look like. I don't accept that. So this is my version of it, and I guess I'm just imposing it upon the world.
[MUSIC PLAYING]
