Beth Hebron is one amazing woman who also happens to have ALS. But I’m not just saying she’s an amazing woman because of this. I would still admire her sense of humor, creativity, and passion for life with or without the disease. I’m sure you all will too once you read her story…
Beth had never heard of ALS until she was diagnosed, which is why all of her early symptoms were taken for granted since they never seemed like serious issues. The first sign was loss of strength and coordination. Growing up a gymnast, she knew strength was measured by the effort you put in, and so just blamed herself for not working out enough.
But the weakness continued to get worse and it really hit Beth when she was on a family ski trip in December of 2012. Her legs started shaking uncontrollably when she tried to stand up and hit the slopes. No matter how hard she tried that day, she just couldn’t get up on her board. An overwhelming sense of failure and embarrassment consumed her so she lied to her family about twisting her ankle so she could just sit the weekend out.
Despite trying to hide her issues, her family started to notice little things that were off and urged Beth to go see a doctor. She was walking differently, holding a fork and eating differently, and her speech was beginning to slur. In fact, during the summer of 2013, Beth was kicked out of a cab for being “drunk” even though she was dead sober. She knew she needed to get help right away.
This started a long chain of medical tests and doctor visits in August of that same year, but it still took a couple months to get answers. Beth’s doctor ordered an EMG and after the test she googled why people get them in the first place. The first thing that came up was ALS. She started to learned about the disease, but didn’t tell her parents because if the tests came back negative, she didn’t want to worry them for no reason.
Beth decided to bring her mother with her for the results and I can only imagine how heartbreaking this appointment must have been for them. The doctor came in and said that they had evidence of upper and lower motor neuron damage consistent with ALS – she was diagnosed in October 2013 at the young age of 26.
Beth described this moment as both painful and devastating. Her mother, who rarely cries, completely lost it and started to breakdown. “It was almost more painful watching my mom go through this pain than the pain of receiving this news myself.”
A couple weeks later, everything finally sank in for Beth. She realized that she was slowly going to lose the ability to do everything. Just a year before, she was living it up and doing everything she wanted to do. Her career was just getting started, she was living on her own, she was single & dating – basically having a real life. Now, she was unemployed, back in New Jersey living with her parents, and needed round-the-clock assistance to bathe, get dressed and eat.
The progression in Beth’s words: “The first thing you lose is your spontaneity. You can’t drive, so you start taking Uber or public transit to get from point A to B. But then you can’t walk or even open a door on your own so you can’t leave the house alone and your ability to live life becomes dictated by the schedules of those caring for you. Next you lose your privacy. It starts with needing help to button your shirt or blow drying your hair, but before you know it your mom is putting your tampon in and you’re actually saying thank you because you’re exhausted from the circus act you just performed trying to do it yourself.”
When put in such a crippling situation, I’m sure it can be extremely hard to find motivation to do anything. That’s why Beth wanted to create something that would get her out of bed everyday and take her mind off it.
The Styled Mannequin
And so, The Styled Mannequin was born! TSM is a fashion and lifestyle blog where you can follow Beth’s street style (which she describes as “inaccessible city dweller and the relaxed Bohemian”), love of music, travel adventures, and journey as an ALS advocate.
“I want to encourage others living with this disease to not dread getting dressed in the morning but to embrace it. From the outside looking in ALS is often not a pretty picture because in more ways than one you’re a living mannequin. Someone else dresses you, feeds you, and wipes the drool from your chin so typically you sacrifice individual style for what’s convenient and easy. This typically means you are left with pajamas, drawstring pants, and maxi dresses. Welcome to my worst nightmare. Now don’t get me wrong I love a lazy Sunday in a cozy sweater and my flannels, but I love fashion and live my life like I’m starring in my own movie and refuse to limit myself or my closet. My goal is to prove to that ALS can do what it wants to my body but it won’t stop me from fiercely living my life and looking fabulous while doing it.”
Beth’s account is literally #InstagramGoals ❤ Seriously, check it out: @thestyledmannequin! She somehow finds the coolest spots to take pictures around NJ or whatever city she’s visiting. This girl makes a staircase look like a high fashion runway, okay? She’s a damn pro. But I think the best part about Beth’s account is the candid commentary on her captions. Some are more focused on the outfit she’s wearing, but some are a witty take on the struggles she’s facing with the disease.
Even though given every reason not to be, Beth is an optimist. She wants to experience everything she can before it’s too late. Living with a shitty-ass disease like ALS, her main focus isn’t working and advancing in her career anymore. It’s now shifted to traveling, exploring, and enjoying time with friends & family. An “early retirement” as she likes to call it 😉
Beth has also become a powerful advocate for ALS. When she was first diagnosed, she didn’t know what the disease was, and people she talked to about it didn’t either. Years later after viral events like the Ice Bucket Challenge, people are finally taking notice and want to know more. “I would tell someone I had ALS and they would stare at me blankly, then end the conversation. Now I am getting the questions. That’s what we need. We need people to be open-minded and look at what this is.”
She is hopeful for advancements in treatments and eventually a cure for this disease once and for all.
I love Beth’s story. It breaks my heart that something like this even happened to her, but I love that she is owning her situation with style, strength, and sass ;). She has an “I can and I will” attitude that is so inspirational and worth celebration. ALS may be a large part of who she is today, but she’s definitely not going to let it control her life or define who she will become. That’s very clear in all of her posts where she tells story after story of how she’s fighting this disease and defying the odds. They’re basically a big middle finger to the disease and I am here for it!
That’s what really stuck out to me when I first found Beth’s page. She’s using her platform to talk about the disease and raise awareness, but she’s doing it in her own way. Even with everything she’s been through in the past five years, she hasn’t lost her spunk! All of her posts, about the disease or not, have a unique style that are a true representation of her personality.
I can’t wait until the day we find a cure for this disease, but until then I will be fighting for a cure with Beth and every other ALS patient out there. You can bet I’ll be treating that last stretch of the Boston Marathon course as my own personal catwalk, struttin’ it out to make Beth proud!
Check out my Crowdrise page to make a contribution to the ALS Association benefitting research & patient care services: http://bit.ly/BostonBeginnings262