If you ask any elementary school age student what the highlight of their day was, the answer is almost always “recess.”
But that was never the case for me as a young girl. Unlike my peers—who literally counted down the minutes until they could run, jump and play—I dreaded those activities and secretly wished for rainy day “indoor recess.” I was embarrassed to be the slowest runner in class or the kid who came in last for everything.
After painful nerve conduction tests in 2nd grade, I learned that I had Charcot-Marie-Tooth (CMT): an inherited progressive neuromuscular disease effecting the peripheral nerves that falls under the Muscular Dystrophy umbrella.
I inherited CMT from my mom (as did my younger sister), who passed away suddenly this January. Our mom taught us that “everyone has something,” and we have to live our best lives with what we were given. My mom was an amazing example, as she refused to use her condition as an excuse for not looking her best or putting on a brave face. Even though she struggled to put on her own clothes and get in and out of chairs, she was always put together and never missed a lunch date with her friends.
It’s because of her strength and positivity that I was able to find a way to break through my own struggles with CMT and help inspire others to do the same via my blog and website Trend-ABLE—but more on that later!
When you live with an “invisible” physical disability, the constant feeling that you’ll never quite fit in is just as mentally and emotionally draining as it is physically. For a very long time, I let CMT rule my life. I used my disability as an excuse to avoid social obligations. When I was asked why I couldn’t do seemingly simple activities like run or go for a hike, I’d say I was in a ski accident or tell another lie that provided some cover other than the truth: I was born this way.
My fear of failing (or being seen as less than perfect) prevented me from growing both physically and emotionally. I was a young girl who wanted to be accepted so desperately that I was literally crying out for attention. And as I got older, my CMT worsened. The onset of Foot Drop Paralysis and worsening balance meant I fell down— a lot. Even though I was terrified to start wearing bi-lateral AFOs, I grew tired of cleaning up my bloody knees and felt there was no other option.
I decided that I needed to stop worrying about the things I could not control. For the first time in my life, I would focus on what I could control—and I never looked back.
First, I earned my Master’s Degree in Social Work from the University of Michigan. My first real job as a therapist and group facilitator allowed me to help teenage girls and women with self-esteem-related issues. I started regularly participating in physical activities like going on long walks or taking Pilates and spin classes.
As soon as I decided I was a person with a disability and not a disabled person, everything else sort of fell into place.
One of my biggest confidence boosters had always been fashion. In my mind, there are few things as uplifting as that perfect outfit or a killer pair of shoes. Now as you might imagine, my bulky CMT leg braces were not a welcome addition to the wardrobe of a self-proclaimed fashionista. But I was determined to find a solution that adapted my disability to my lifestyle—not the other way around.
After going through five different types of braces and brands, I finally found the Allard BlueROCKER™ AFO. It’s been a game changer for me as the size and design allows me to wear trendy clothing and shoes that were once impossible with other AFOs.
My wardrobe now has everything from cute stretchy skinny jeans to maxi dresses without sacrificing the support and stability I need to live an active life. The Allard braces gave me renewed confidence. It was because of this—and watching my mom struggle over the years—that I decided to use my strengths, knowledge and experience to help others.
Trend-ABLE is a lifestyle website for “perfectly imperfect” women with invisible physical challenges and disabilities. The website explores ways to feel and look confident in the body you have while finding humor in everyday challenges. From skinny jeans that work with AFO braces to dating and cocktail party tips for women who wear AFOs and have hidden disabilities, I’ve tried to provide support for all aspects of life—especially the parts when a condition like CMT can have such a big impact on self-confidence.
Through the website and daily posts on social media, Trend-ABLE.com has already empowered hundreds of women searching for creative ways to look and feel their best with physical disabilities and challenges.
Launching Trend-ABLE has also proven to be a therapeutic experience for me. It forces me to let go of my perfectionism (maybe for the first time in 47 years) and be truly raw and vulnerable. It has no doubt been scary, intimidating and frustrating at some points. But those fears are always trumped by the satisfaction I feel knowing that I’m providing hope and inspiration to others.
And while I’m not quite sure where this new adventure will take me, I know that if I can give just one person a way to escape the self-deprecation and doubt that their disability may fill them with, all the hard work will have been worth it.
My journey has taught me that a person is only defined by what they choose to define themselves with. I choose not to define myself by my disability. I am not simply a CMT patient. I am Lainie Ishbia: wife, mom, friend, blogger, licensed therapist and fashionista.