At age 14, Rebecca visited a doctor who gave her some answers to questions she didn’t even know she had at the time. What was supposed to be a normal physical for high school sports ended up being a serious diagnosis for a rare condition. Rebecca could bend and stretch in ways that weren’t natural. She could move both her arms in complete circles. While it seemed like a cool party trick, her small town doctor recognized it for what it was: Ehlers Danlos Syndrome. A collagen disorder, EDS results in weakened connective tissue, hypermobile joints and high bruisability. The condition is degenerative and has no cure.

That doctor gave Rebecca advice she follows to this day: “You’re going to have doctors who think they know more than you about this condition. But you need to fight for yourself and just listen to your body. You know what’s best for you.” He quickly added some restrictions – under no circumstances should Rebecca ever do any of the following without risking death: horseback riding, bungee jumping, skydiving, or child birth.

Rather than let her condition limit her, Rebecca used it as motivation to live every moment to the fullest. She knew that sooner or later, EDS would catch up to her and take away many of the activities she loved the most.

Fast forward over a decade later and Rebecca was walking into her first encounter with Chive On California, one of the original self-forming Chive Nation groups. At the time, she was already feeling the degenerative effects of Ehlers Danlos. She always tired more easily than others but exhaustion was starting to become ever present. In theCHIVE community, however, Rebecca found a second home and a place she could be herself.

“My whole life I’ve been sober,” Rebecca recounted. “Could you imagine Gumby being white girl wasted? What theCHIVE community provided was a social aspect that I craved. And the more I learned about the charity aspect, the more I became involved.”

Rebecca was there to help carry bricks on Michael Sexton’s living space renovation. She was there helping run and organize the very first meetups that raised money for Chive Charities.

In fact, she and Ron Coleman were the first Chivers to bring a check to the Venice office with Chive Charities’ name on it. “I remember John Resig holding the check with a confused look on his face, asking what it was,” Rebecca recounted. “It’s from a little party we threw so you can help more people like Zoe Lush and Michael Sexton.”

“I’ve built life-long relationships and friendships through theCHIVE. Krissy and Heston Stein have become some of my best friends over the years. They always saved a VIP badge at the Green Gala so I could have a safe space to rest.”

THE SLOW AND STEADY DECLINE

In the end, Rebecca always knew her Ehlers Danlos would overtake much of her everyday life. Nowadays, she needs to plan every action out carefully. From what she eats to every time she moves.

“From the outside, I may look fine — but inside, everything is loose, unstable, and prone to falling apart without warning. My joints dislocate easily, my muscles constantly overcompensate, and even basic movements can cause pain or injury. There’s no structural integrity — no predictability. I have to think about every single action I take, whether it’s walking across a room, opening a door, or sitting down in a chair.”

One simple misstep can land her in a boot for months followed by months of phantom pain. And even more frustrating for Rebecca is the fact that every injury never fully heals. It’s just managing her new normal time after time. 

“The truth is, I’m exhausted,” Rebecca admitted, “physically and emotionally — from holding together a body that feels like Jell-O in a people mold.”

HOW THE TURN TABLES

Rebecca now relies partially on a wheelchair to get around, a second-hand wheelchair that wasn’t fit to her needs. They’ve had to self-modify it to make it work. And it’s also manual so she only goes so far before her energy gives out and she becomes stuck. “I can’t tell you how embarrassing it is to sit in the middle of the grocery store for 15-minutes without moving while I try to regain my energy while people constantly ask if I’m okay.”
  
Nowadays, she feels like she’s a burden to all those around her. 
“I often find myself wishing I could just sit — truly rest — without hurting.”

For someone who spent much of her life alleviating the burden of others in their greatest time of need, that just won’t fly around here. When one of our own reaches out for help, we answer the call.

With a $8,645 grant from the Chive Charities donors, we’re getting Rebecca a custom fitted TiLite Z chair with power assist. For Rebecca, it’s not just a mobility device, it’s a lifeline. “It would preserve my joint health, reduce pain, and give me back the freedom to move through the world with safety and dignity. And one day, I dream of using a racing wheelchair to return to the RunDisney events I once loved.”

I asked Rebecca what she loves about Chive Charities recently and her response sums up what we do best around here. “When you change a life, it sticks with you long after the impact comes and goes. The recipients become family and the impact actually lives forever.”

From one Chiver to another, Rebecca, I want to personally thank you for inspiring this community. You’re the embodiment of what it truly means to be a Chiver. You’ve always been there with a smile, through the ups and downs. You’ve put in literal blood, sweat and tears for others so they could be just 10% happier. You’ve given everything you could. And on behalf of everyone else around here, I’m happy to extend the hand back to you in your time of need. 

Help reach out a hand to the next Chiver who needs it by donating to Chive Charities RIGHT HERE

Thank you,

-Brian and the Chive Charities Team