Estelle Spencer, an upbeat grandmother and mother from a small town in Virginia, has been living with paralysis for several years, even though it was a slow progression. With an injury caused by a benign tumor, she slowly became paralyzed over a series of surgeries. Now 49 years old, Estelle reflects on life with a spinal cord injury and shares how she’s been able to transition into living life as a paraplegic.
Slow March of Paralysis
A spinal cord injury doesn’t always happen instantaneously. Estelle, a T5 paraplegic, was paralyzed slowly, with her mobility first being lost in 2000. “I went to a neurologist and they said I was just stressed out. Over a couple of years numbness started coming up my legs. Fast forward 5 years later, I went to an ortho doctor (I had tore my ACL). He told me ‘Yes you tore your ACL, but something is going on with your spine.’”
The doctor sent Estelle to another doctor and they gave her an MRI. “It took awhile but finally they said that I had some type of swelling in my spine. They thought it was very odd seeing I had not ever been in an accident. I had a thoracic laminectomy.” After the procedure, her doctors sent the biopsy to John Hopkins Hospital to see if the tumor was malignant or benign.
“Thankfully it was benign and then I was told they would do radiation therapy and I should be fine, or that I would probably have a limp but that would probably be it. After the radiation, my limping kept getting worse. They couldn’t explain it and decided to send me to Duke University for the hyperbaric treatment.” Estelle says that surgery didn’t work either. “They also said some of the tumor may be left, so they did a second thoracic laminectomy. By this time, I was using a walker but still getting worse. The 3rd surgery and last one on my back did nothing but push me to a wheelchair.”
Finding a New Path
When Estelle started becoming limited in her mobility, she was 26 and the mother of 2 children ages 10 and 12 years old. “I took my kids out and did all kinds of things including swimming, amusement parks, and concerts,” Estelle says while she waited for the results of her tumor. She was in college at the time as well and studying to be a Medical Assistant. “I had two weeks left in my internship and I was working at Target.”
Once she needed to use a wheelchair, Estelle went to the Shepherd Center for a month. “I had self-taught myself 3/4 of life things,” she says, explaining her shorter stay. “And our home was pretty new as well so the doors are wide enough for my chair.” Estelle also credits her family and kids for helping keep her smiling and positive. After going home, she was also able to return to work and worked for several years after her injury until 2018, when she lost her job.
“I never missed a beat with life until I lost my job,” she says. “I think it was because I had something to do to take away from sitting around dreaming about life.” “I questioned why me originally, but afterwards I knew ‘why me;’ I was built for this.” She admits however that when her daughter grew up and became pregnant, she began to doubt her abilities. “I worried about holding her. Right now I get really nervous when I watch them. I am soooo scared something will happen and I won’t be able to get to them. Its rough because my heart could not handle if anything happened on my watch.”
After losing her job, Estelle started working as a driver for Uber. “The job helps me out with social skills,” she says. She also has her eyes set on self-improvement. “I’m hopefully looking into working out a gym soon. I definitely want to get in shape. I used to be an athlete.” Since Estelle lives in a small town, adaptive sports teams are no where nearby. “I did play (wheelchair basketball) in a little tournament in our neighboring city a couple of years ago,” she says, and she also played while at Shepherd.
Looking to the future, Estelle has three goals – enjoying her grandkids, finding a partner and traveling. “I would love to travel more,” she says. “And I want to get up the nerve to travel by myself.” “I never went to Europe or China. I just want to explore.” Estelle is also hoping to change her single status to attached. “Find me a fine husband,” she laughs. As for if she think she’ll ever walk again, she doubts it will happen, but “never say never,” she says, hinting at technology advances.
And Estelle has wisdom to share for anyone with a spinal cord injury reading this: “Never forget that you’re still here for a reason.”
— Follow Estelle on IG @ https://www.instagram.com/koolaid_44