I’m sure she doesn’t agree, but I’ve always thought there was something innately graceful about Beth Hebron. Even though she’s got the awkward, halting gait of a person with ALS when she’s not in her powerchair, her longgggg legs can walk a little ways unassisted, which I for sure can’t do. ALS prevents her from raising her arms, but it can’t erase those long, slender fingers.
It wasn’t until the Olympics that I put my own (shorter, stubby-ier) finger on the source of her gracefulness. It turns out Beth was an elite gymnast. Strong, muscled in a world where microseconds and millimeters mattered. Just look at her fly!
Then she was diagnosed with ALS at the ridiculously young age of 25. In spring 2012, she noticed weakness in her arms. By the fall, she could no longer run. The following summer, she had lost dexterity, the ability to type, and her voice had become severely impaired. After more than a year of wondering, making excuses, and living in denial, she finally got the diagnosis.
All this time, she was working 80 hours a week as a paralegal in a DC law firm, like thousands of other aspiring 20-somethings. She was dating. She was playing kickball on the National Mall. Until she face planted. Until she got kicked out of a cab for slurring her words like a drunk when she was sober. Still, she tried to maintain normalcy — she kept working and lived alone until October 2014 until it all just became too complicated and dangerous. She “retired” and moved home to Maplewood, NJ.
Now that she’s an ALS veteran of 3 years, most daily tasks are a struggle.
“I was taught that if I worked hard enough, I could do anything,” she says. “But now, it doesn’t matter how bad I want it. It’s not going to help me or change what’s happening to my body.” All the hours spent at the gym, fixated on getting her body to rotate, turn, and flip just right, replaced with an inability to do even the simplest task of raising her arms. Thoughtless replaced by impossible, no matter how much she concentrates.
Her voice is gravelly, strained. I can tell she has so much more to say than she can manage. I’m starting to notice that in myself. It’s just too much effort and it’s tiring.
But her unique Beth-ness is irrepressible. Without speech at the center, she’s found other ways to communicate her spunk. Maybe even embraced it more, now that she’s been able to shed the standard-issue DC uniform of business casual with sensible pumps.
If you’ve seen the HBO Vice episode on ALS, she’s the one in twirling around in her powerchair rigged with little blue lights. Like she’s operating her own planetarium. Cool.
The “Many Hairstyles of Beth” include her natural dark brown on top and blond-ish on the bottom.
That is why Beth is such an inspiration to me. For all ALS has taken away, it gave her the freedom to embrace her self: her own unique style and her love of live music. Most of the photos and videos I see on Facebook, she’s rocking out at some concert in cutoff jean shorts and hiking boots.
In her story, I see parallels to mine, even though I’m nowhere near as cool. She’s trying her best to enjoy what she loves as long as she can. Her forays have led to amazing adventures and unexpected acts of kindness. She recounts one of her best days with ALS two years ago at Firefly, an outdoor music festival in Delaware that she goes to every year:
“It had rained the day before so my chair kept getting suck in the mud, which would have been stressful, but every time without fail, a group of good Samaritans would descend on us and lift me right out. During the course of the day, the paramedics for the bands noticed the sign on my wheelchair to raise awareness for ALS.net. They brought my sister and I backstage to meet one of my favorite bands, Walk the Moon. We chatted and the lead singer, Nicholas Petricca, told me he liked my chair. It was pretty epic.”
ALS never lets anyone off easily though. She suffered a major setback in March when she slipped on the tile floor in the bathroom:
“I crashed down directly on my right arm because I did not have the arm strength to brace my fall. My mom comes jetting up the stairs. I tell her I’m fine as she slowly peels me off the floor, but as I try to walk I realize ‘damn this actually hurts like a bitch’ so off to the ER we go.
Now going to the ER sucks for a number of reasons, but when you have ALS it turns into a full on circus act. ‘Step right up to the X-ray room where you will see the incredible Beth get taped in various elaborate, dangerous and painful positions to determine which bone she has broken!’ The reward for my hard work? A percocet and a diagnosed hairline fracture of the shoulder. But hey, I got through it and the day is done.”
But it was the following weeks of required immobilization of her shoulder that compromised Beth’s overall health.
“Here is everything I can no longer do on my own but could before I broke my shoulder:
- Drive a car
- Walk more than 20ft consecutively
- Cut my own food
- Take a shower
- Dress myself
- Go to the bathroom alone.
Losing this last bit of independence put me into a downward spiral, which is something I haven’t felt since I was an emo teenager.
But then the weather improved, we got a wheelchair accessible van, and I was back to myself going to brunches, concerts and everything in between. Even if I need a caregiver to assist, I’m still going to do me and look fabulous while doing it – so take that ALS.”
As usual, there’s too much to say about Beth (and her family). In Part 2, I’ll recap my race for Beth at the YuKan Run Triple Threat and talk about their incredible commitment to ALS research through ALS.net.
But for now, won’t you consider celebrating the fact that you CAN move your muscles and be a hero or she-ro for ALS? Join our virtual race on Labor Day weekend. Get your kids involved — teach them about being physically active for a great cause!