Stylish Woman who has MS, an Invisible Disability does an interview

Meet Ardra Shephard:

Ardra Shephard is a devastating illness expert, having lived with multiple sclerosis for more than 15 years. Her blog Tripping On Air is the irreverent, insider-scoop about MS that manages to inspire without ever being saccharine. It’s frank, it’s funny, it’s what you’d want your best friend to tell you about what it’s like to live with chronic illness. Ardra was named one of the Top 50 MS bloggers “in the universe” by feedspot.com, one of the Top 25 MS bloggers by healthlabs.com, and was featured on Sickboy Podcast (October 2017).

How did you learn you had MS and how did you originally cope with the disgnosis?

It can take years to get an MS diagnosis, but I nailed it in just 6 weeks. I was 23 and woke up one day with a stabbing pain in my eye, and for about a week I was tired like I’d never been tired before. I’m talking, fall asleep at Starbucks with a venti in my hands next-level tired. I thought maybe I had a migraine. Epic hangover was also a possibility. A week later I couldn’t see out of my painful eye and was suddenly deaf in one ear, so I walked to the emergency room.

At this point, I knew it wasn’t a hangover, but I really thought I just needed some antibiotics. Several tests, and 5 weeks later, I’d lost vision in both eyes, my feet and face were numb, I was having trouble walking, and an MS diagnosis was confirmed.

I was stunned. I thought my life was over. I cried a lot. If I really think about it, it’s still kind of stunning.

What was the impetus for you to go public about having MS and write your award-winning Blog, “Tripping on Air?”

So many reasons to not write a blog. I was initially open about my diagnosis, and this had consequences I hadn’t expected. I’d never seen myself as less-than, but suddenly others did. I clammed up and began to reject the idea that MS could have anything to do with my identity.

Eventually, I realized this was giving MS a different kind of power over me. By not speaking up, I was contributing to the very ideas I was rejecting.

I never wanted to be an activist, but we need to collectively change our minds about how we view disability. My blog is a way for me to declare that, yeah, I have MS and I’m actually pretty kick-ass. I’m not going to fade into the background, and I will not be othered. I will not let anyone tell me who I am.

What are your current physical challenges and how do they impact your everyday life?

You don’t want to hear about my weak, spastic legs, painful purple feet, unreliable GI system, the ins and outs of self-catheterization, or how boring MS fatigue can be. Nobody does. It’s such a drag to lay it all out.

Everything about my daily life is planned around MS. Advancing MS can be a moving target, but when things are relatively stable, disease management becomes habit, automatic, like brushing your teeth. You find a routine, and even this fucked up situation becomes kind of normal.

It’s amazing what you can get used to.

In articles you have written in magazines, and on your Blog, Tripping on Air, you demystify the connection between disability and beauty. Why is this important to you?

It’s important for me to demystify the connection between disability and beauty for totally selfish reasons, like, I refuse to stop being pretty just because I have MS. It never occurred to me that this was something I was expected to give up, but that is kind of what society demands.

So, again, I’m not going to let anyone else tell me who I am, and I’ve learned that, at least to some extent, people will believe what you believe about yourself. It’s tough, but we need to be the ones who stand-up (or sit-up) and say, we’re here and we’re as entitled to beauty, and sex, and joy, and life as much as everyone else.

If I can empower other women with disabilities to feel this, and to be able to say this about themselves, well, that’s everything.

What do you wear that makes you feel confident?

I love my closet and whole-heartedly believe in the transformative power of fashion. As far as a go-to piece, it could be anything from my Soia and Kyo moto jacket, to a pink cocktail dress, to my favourite, worn-in yoga pants.

I’m a mix between investment pieces and comfy lounge wear, but I try to love everything in my wardrobe. I’ve struggled with what standing behind a mobility aid does to my appearance and have even tried to dress my Nexus (rollator) up by painting the orange, plastic knobs with a gun-metal Dior nail-polish.

It’s all in the details. These things matter.

Favorite non physical activity?

I’m a nerd for learning languages. I speak four and would love to learn more. But if I’m being real, it’s Netflix. Like, how were we ever happy before Netflix?

Favorite book?

My all-time favorite book would have to be Anne of Green Gables (LM Montgomery). Anne Shirley had a profound impact on me growing up. And I could read A Prayer For Owen Meany (John Irving), again and again.


Personal motto or favorite quote?

“If all you can do is crawl, start crawling.” (Rumi)

14 Comments

  1. Great stuff, Ladies! My favorite take-away “I refuse to stop being pretty just because I have MS” (in my case, CMT). Words to live by!😘😘

  2. Thank you Lainie and Ardra for this encouraging blog. I really appreciate how you both speak with open candor. I have CMT 1A and have to wear AFO’s to get around. I also like to “look good” when I go out and feel that my disability may slow me down, but it doesn’t define me as a person. Here’s my favourite quote:

    Why should we be in such haste to succeed, and in such desperate enterprises? If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears however measured or far away.
    ~Henry David Thoreau

    • Awesome quote. I’m always telling myself to slow down. Even though I couldn’t move quickly if I tried, there is always pressure when you’re moving in a crowd to keep up and for me, that is def when I’m gonna trip and fall.

  3. I have known Ardra for a short time, but long enough to know she is beautiful inside and out and funny as heck too. I don’t know many who can be so active and yet be going through so much. Ardra you really are an inspiration to everyone, those who know you, and those who meet you for the first time. Hugs.

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