Chasing Peace after Treatments Bring More Pain
As a high school junior, Sara Gehrig was laying the groundwork to play college basketball. Then her first reconstructive back surgery at 17 sidelined her, and she had to work with tutors from her bed. This experience would be far from her last surgery—and the procedures she hoped would improve her pain ultimately made it worse.
Sara, who lives in Wisconsin, was likely born with chronic spinal stenosis, and it worsened in middle school. Now 42, Sara has dedicated much of her adult life to personal training, yoga, and nutrition. At one point, she had her own yoga studio where she taught classes on top of working with individuals dealing with pain and recovering from medical events.
Despite her healthy lifestyle, Sara dealt with increasingly difficult limitations requiring multiple surgeries. After she woke up from a spinal fusion surgery in 2018, she knew something was terribly wrong. She could barely move her right leg.
“I’m trying to move,” she shares, “and I can feel all the hardware.” Shaking and experiencing intense pain, Sara repeatedly asked to see the surgeon. But he was nowhere to be found. Sara was given a pain reliever and sent home to recover.
But the “shooting, stabbing nerve pain” in her leg wasn’t dissipating, and her numerous attempts to contact her surgeon for help were dismissed.
“I was getting sicker, and no one would help me,” she says. “My body was failing, and my mental health was getting worse. The pain kept me up most nights, and I got to the point that I knew why people took their own lives from pain.”
Finally, Sara was able to see a new surgeon and learned that her previous surgery had trapped a nerve in her right leg. Because of the length of time that had passed, Sara would have permanent nerve damage in her right leg and lower lumbar.
She also discovered that the pins and screws weren’t installed properly, and one of the fusions was never administered during the surgery. Additionally, Sara had contracted a serious staph infection that had run rampant for almost six months. The infection was due to the use of an unsanitized surgical utensil on Sara and other patients that day. Her surgeon was made aware of the breach of sanitization shortly after her surgery, and kept this information from Sara. The surgeon eventually was fired, but now is practicing in another state, Sara says.
TRYING TO HEAL THE DAMAGE
Sara has since undergone two corrective surgeries, a failed implant procedure, twice-daily antibiotic infusions, years of physical therapy, and numerous spinal injections.
She also has had to process unsurmountable anger and grief surrounding what happened to her, fighting to be seen and taken seriously. At 38, she was sidelined from working in the professions she loved and went on disability.
“My body was my career as a personal trainer and yoga instructor,” Sara says. “I no longer could do any of those things. I was worried about being stigmatized for being so young and on disability, so I know this is really when my depression and shame [began]. This is when my rock bottom started.”
Her losses extended into relationships, too. Sara came out as a lesbian years ago after having been married to a man. As a single mother—albeit one with a great ex-husband and co-parent—to two amazing sons, Gavin and Connor, Sara was looking for a loving partner. But her health has made that challenging. One woman couldn’t emotionally cope, and others found themselves being mistreated by health care providers.
Perhaps the most glaring instance was when Sara was inpatient and was censured by a nurse for having her partner hug her. “I was shaking due to the shock of the pain, and [the nurse] gave us a very cold look,” shares Sara. “She told my partner it was not appropriate to hold me like that in public. Mind you, she just had her arms around me to stop me from shaking because it made my back hurt worse.”
In addition to chronic spinal stenosis, Sara also lives with failed back syndrome, chronic neuropathic pain, pelvic floor dysfunction, chronic sacroiliac joint dysfunction, and depression. She is allergic to pain medications but gets some relief from anticonvulsant medications. She has found meditation helps her the most, but her pain typically remains at about a 7 out of 10.
Sara’s nerve pain can feel like numbness, pins and needles, and burning down into her feet and toes. Sometimes it’s electric, sharp, or achy, “like a toothache,” she says.
A once extremely active person, she now finds that some days, even existing is hard. “Never assume what is happening on the outside of someone reflects what is happening on the inside,” she says. “Our outer canvas only paints one picture for the world to interpret. We are trying harder to do the little things, and we are exhausted.”
Feeling as though she had lost her purpose and not knowing what to do now that pain consumed everything, Sara hit rock bottom. In a moment of complete darkness, as she wept out in prayer, she got her answer. “I heard plain as day, ‘Sara, you’ve done all you can; it’s time to come home now,’” she says. “I knew at that moment, I had to make a choice. I had been clawing at life, mad as hell, stuck in sadness, grief of that past, but I was never going to move forward like that.”
She realized that her anger was making her health issues worse, adding extra muscle tension and pain to an already torturous situation. “I moved from ‘I’m going to continue to suffer’ to surrendering to it,” she shares.
CREATING A NEW LIFE
“This has been the worst and most beautiful thing that has ever happened to me,” Sara explains. She has let go of things that didn’t serve her, limiting her circle to those loved ones who are truly emotionally close to her. “I learned that my calm, my peace, is expensive.”
Sara works closely with her ex-husband as they care for their now 18- and 17-year-old sons. Both Gavin and Connor know her 2018 surgery didn’t go well and Mom needs more help, but to the extent that she can, Sara tries to keep her pain and health issues private. “I don’t want them to feel burdened by me or worried for me, especially during their fun high school years,” she shares.
Sara went back to school, obtaining her doctorate in theology. She is an active volunteer for the U.S. Pain Foundation and runs two support groups: one for the LGBTQ+ community, and a Wisconsin-based group. “The U.S. Pain Foundation saved me when I was at my rock bottom,” says Sara. “I realized if I could help others, it would also help me to continue to heal.”
Sara stands up and advocates for herself now, especially when it comes to her sexuality. “I’ve tried to educate my providers,” she shares. “I know I am not the only LGBTQ+ patient they see.” She talks with her providers about how her injury affects her dating life, and how frustrating it is that those treating her never ask about her relationships. Says Sara: “You need to ask me about my sexual function because it does affect my nerves.” She encourages others to discuss their sexuality, gender, and sexual health with providers, too.
Sara is resilient and urges those dealing with pain to keep going, despite the challenges and roadblocks. “Use your voice and keep speaking what you know to be true about your body,” she says. “Only you know your body. If you don’t like what you heard from one [doctor], keep moving along until you get a pain team that is best for you and your body.”
Like all too many individuals living with chronic pain, Sara’s journey is ongoing. She has had to begin again and find that new normal.
“Ninety-nine percent of the time, there is joy,” she says. “There may not be happiness, but there is joy.”
Perhaps there, too, is hope.
“Never assume what is happening on the outside of someone reflects what is happening on the inside. Our outer canvas only paints one picture for the world to interpret.
We are trying harder to do the little things, and we are exhausted.”