Transcript
Earlier this year, the spinal CSF leak community lost a bright light when Connie Rim passed away. Connie spent many hours raising awareness about spinal CSF leaks. Her Facebook page, called “My CSF Leak Story,” was one of the places where she shared the details of her medical journey with the world. She also posted to TikTok, creating powerful short videos that communicated her complex story in eloquent, honest detail. She shared those on Facebook, too. Her videos went into her many debilitating symptoms, and they also patiently explained the procedures and diagnostics that she experienced. She answered all of the questions she received about what she was going through, and in doing so, she helped countless patients and her general audience understand more about spinal CSF leaks, as well as the challenges that patients may face when they manage them.
Behind the scenes, she supported new and long-term leak patients alike with encouragement, with kindness, even when she was in a lot of pain. And she brought the community together, asking her followers and her viewers to share their experiences with spinal CSF leaks, helping them feel less alone. This was a post from 2021 where she asked people to write a word for what it felt like to endure the condition. This graphic was the compilation of their submissions.
Connie sustained her leak 5 years ago during spinal surgery and tirelessly rallied her body and mind in her attempts to get care, hoping to find her way back to a place of less pain. Though she underwent a long list of those diagnostics and procedures, her leak – or leaks – were not sealed, and over time her pain only worsened. Someone once said to her, “The hardest part is over now,” after a procedure she received, but she asked, “Well, how many hardest parts are there?” And unfortunately, this is a sentiment that many patients in the leak community can relate to.
Connie lived with that pain for many years. And yet, despite the pain and the exhaustion, she remained joyful where she could and wrote often about the love that she had in her life – for her family, for her community, for her husband, Darren, who we just heard from today. Towards the end of her life, her pain was constant and ruthless, and eventually, it became too much. As she noted in her writing, “The pain determines my emotions, not the other way around, as some people believe.”
A few days after she passed, her husband, Darren, posted words from Connie about her death and his own thoughts. “My heart breaks not only for the loss of this wonderful person,” he wrote, “but for all of you who follow her here. This page meant so much to her, and she loved each of you, and we loved her.”
Her passing hit the leak world very hard. Even those who didn’t know Connie personally often watched her videos or interacted with her in the Facebook groups. In my case, I was virtual friends with her for years, and we exchanged audio messages, cheerleaded each other, compared notes, and shared how we coped with a chronic leak. The Spinal CSF Leak Foundation featured Connie several times over the years, and she participated in leak week and dura dash as she could. She was generous with her time and her words – anything to help move progress along for this debilitating condition.
Connie’s legacy in the leak world is multi-faceted, and it includes her fierce advocacy and the honesty with which she conveyed her story, touching so many lives in the process. No matter how much she suffered, she never stopped trying to help. And I know I speak for all of us in the leak community when I say that we are so thankful that she spent many of her limited spoons trying to do so.
It is with gratitude, too, that we at the Foundation share that her family asked people to donate in her name, should they wish to honor her – and honor her, they did. To that end, and with the approval of her family and Darren, this weekend’s conference has been made possible in part by donations made in her memory. Her impassioned commitment inspires us here at an event that gives patients a seat at the table to share their experiences, to share their hardships with spinal CSF leak, and where patients are able to attend without paying a fee – a conference that has many physicians speaking about new research and progress, new techniques, and hopes for the future.
We at the Foundation would like to thank Connie’s family and Darren for their support and for extending such generosity in the midst of their grief.
Connie, we miss you. We will always remember you, your powerful advocacy, and your generous spirit. Thank you.