This Woman Went Through Countless Surgeries to 'Untether' Her Spinal Cord, After Being Born With a Rare Disorder
As a kid, Claire Raymond was super active. She played sports, loved the outdoors, and stayed outside with the neighbors until the streetlights came on. That all changed when she was 11 years old and started to experience intense pain in her back.
Raymond soon found out the cause of the pain: tethered cord syndrome, which meant that her spinal cord was tethered in a tumor. Specifically, she had a lipomyelomeningocele—a fatty, non-cancerous mass under the skin—attached to her spinal cord, pulling on it and causing pain. It was a condition that she had unknowingly been born with, but the diagnosis only came when the pain began during a growth spurt; as her body tried to grow, the tethered spinal cord was being stretched.
When she was in fifth grade, Raymond had surgery to remove the lipomyelomeningocele and free her spinal cord, allowing her to grow without pain. The surgery gave her relief for a few years.
Then, things changed when she was in eighth grade and started to experience the pain again. This time, however, it was due to scar tissue her body had developed around the spinal cord, a phenomenon called "retethering" that had the same effect as the original fatty mass. She had a second surgery that year to address the retethering, but after that procedure, the scar tissue only began growing more quickly. She experienced less than a year of pain relief before her spinal cord was yet again tethered by scar tissue, requiring another surgery.
Each time she had a surgery to scrape away the scar tissue, there was more of it, and her doctors had to make larger incisions on her back. Throughout her time in high school, she had frequent surgeries; in fact, when she reached her 13th spinal operation, she stopped counting them. For a decade, Raymond had repeated trauma to her spine, making it extremely difficult to move to the point where she found herself unable to even roll over. She says that, during this time, her pain was at a "level 10" and that she went sleepless for days.
She also explains that the trauma wasn't only physical, but also mental and emotional. Raymond started having trouble going back to the hospital; she experienced flashbacks to past procedures, as well as intense moments of full-body panic. She developed depression and so started seeing a therapist once a week. Eventually, she brought herself to tell her therapist that she was suicidal. "That took a lot of courage for me," she tells Health. Her therapist pointed her in the direction of a group therapy program.
"A lot of my childhood was in and out of the hospital, and I had to start reframing how I viewed myself; what made me, me; what made me happy," she says. Besides going to therapy to get the mental health help she needed, Raymond also found ways to fulfill the innate competitive drive she has that had once been satisfied by playing sports like soccer. She began dance, performed in show choir, and took up theater.
"For me to be able to escape my own traumas, be able to take on someone else's story, and get on the stage to perform and just completely let go, that truly changed my life forever," she says.
She worked with the schedule that her surgeries allowed to be in those theater performances, making sure to give her body the time it needed to go through the procedures and heal. If she had surgery scheduled for the spring, she'd perform in the fall musical.
Each time Raymond had scar tissue removed through surgery, she was told that she was done growing and that it'd be the last surgery. But the surgeries kept coming, and so did the retethering. "My surgeon could see that the traditional surgery of removing scar tissue was not going to work long-term for me," she recalls. "While we explored alternative solutions, I would deteriorate to the point of being bed bound." For two years, she was only able to sit long enough to eat a quick meal before needing to lie down to recover from the pain.
During that time, whenever she did move her legs, it pulled her spinal cord, causing leg and back pain. Raymond had to find a way to best support her spinal cord, which meant using a wheelchair. At first, she used a wheelchair her grandfather had previously used, which she could barely push herself. It wasn't until she got her own custom-made wheelchair that she could push on her own that she says she truly felt "freedom." It was the first time she was able to sit for more than 10 minutes at a time. "My world completely opened up for the first time in years," she says.
In March 2020, doctors put a pain medication pump in her stomach; it delivers medication to her spinal cord 24/7. The hope was that it would completely free her of pain, but it only helped so much. She could still sit in her wheelchair for no more than 30 minutes and needed to lie down for hours after to recover.
Then, to further alleviate some of the pain and to improve her quality of life, Raymond had her T12 vertebrae removed in October 2020. By removing the vertebrae and shortening the length of her spine, her spinal cord was given some slack, which means that it isn't being pulled as tightly. Today, she can tolerate sitting in her wheelchair for hours.
Now, at the age of 23, the California resident is enrolled in college so that she can become a therapist; she hopes to help fill the void of disabled and queer therapists she found existed when she herself sought therapy. She's also started hand cycling and has begun to dance again.
"There's something that's so magical about putting on a song, choosing how you want to convey the emotions of that song, and then letting your body move… If your body doesn't move like everyone else's, it doesn't matter because dance is truly for everyone," she says.
She posts her moves to Instagram to prove that there's no one way that dance has to look and to "show other people who've been told they can't do something because it looks different that it's up to your interpretation."
Instagram had already become a place of community for Raymond before she started posting her own videos—a place where she could follow other people with disabilities and see that she wasn't alone in her experiences. Seeing others be so open about their physical, mental, and emotional struggles inspired her to talk about "the good, the bad, the ugly, the funny" of her own life. But when she started posting clips of herself dancing, the negative comments came: Anybody see her foot move? She's lazy. I can see her body moving. She's faking it.
That's when Raymond decided to make a video of herself crossing her legs while sitting in her wheelchair, saying that not all wheelchair users are paralyzed and that "doesn't make their need for a wheelchair any less valid than someone who does have paralysis."
"Showing that ambulatory wheelchair users do exist, that was important for me… just because I can move my legs doesn't mean I don't need a wheelchair," she says.
The video, which she posted on February 15, 2021, went on to get 8 million views.
And that's the main goal of her Instagram account: to educate. "We're not taught about disabilities growing up. We don't see disabilities accurately represented in the media… If you're not educated in disability culture growing up, that's not your fault—that's the society we're raised in," Raymond explains.
Now, she doesn't only post videos and photos that touch on tethered cord syndrome, but also other disabilities, so that she can spread awareness and help normalize other conditions. To do this, she's highlighting other disabled people as well as children's books that address disability.
"If you're a doctor, a fitness instructor, a teacher, we're all going to come across disability in our lives, whether it's yourself or whether it's someone close to us," she says. And by educating yourself about disability now, Raymond says that you can be better prepared to address disability in the future—whether in your personal or professional life. "So I encourage people to follow activists and just everyday people on Instagram that do have disability so you can immerse yourself in that community and learn how to better be a good ally going forward."
Another thing she does is proudly shows her scars. The scar from her spinal surgeries started small, with just two lines on her lower back. But after so many operations, it now goes from above her bra line down to right above her tailbone. She says that showing her scars is her way of pushing back against the curated perfection that floods Instagram.
"I really stopped caring what anyone else felt about [my scars] because it was my body and it showed the journey that I'd been on physically… And it became important for me to own my body and not feel shame from it because I think as women we are taught to make our bodies fit a certain mold, to look a certain way, but when my body got to a point of my condition being disabling, there was no more opportunity even to try to fit the mold; I physically couldn't," she says.
The decision to post photos of her scars gave her a feeling of freedom. "I stopped trying to arch my back in a certain way, or suck in my stomach, or do a certain angle at the camera. No, this is my body. It has gone through hell and back, I have fought to be here, I am proud of it. My scars are tattoos that life has given me, and why shouldn't I be proud of it?" she continues. By showing her confidence, she hopes that others, especially those with disabilities, will be encouraged to feel confident in their own skin.
The scars serve as reminders of what she's been through to manage her tethered cord syndrome, and she still experiences effects from the condition every day. Even though she has a pump to provide relief, she lives with daily chronic pain in her lower back and legs.
People sometimes ask her what she would do if she didn't have her disability or have to sit in a wheelchair for one day, and her answer to that is simple: She's doing everything she'd want to do already. "If you take away my disability from me, you take away so many key components of me because of what it's taught me… My whole life has led me to be exactly who I am today and I don't take any of it for granted."
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