I’m Fueling Support: Lisa O’Leary
Lisa O’Leary’s has a unique capacity to articulate even the most excruciating, difficult-to-hear details of her experience as a caregiver to a brain tumor patient. Her willingness to share the unvarnished details of her story, and listen to that of others, has made Lisa a go-to source for peer-to-peer support in the brain tumor community.
It wasn’t always that way though.
“I shut down, and for the most part, did not speak honestly about what I was going through,” Lisa says.
Lisa lost her beloved husband, Patrick, to glioblastoma in 2015. The location of Patrick’s tumor caused complicated seizures that resulted in prolonged episodes of altered consciousness and psychosis. His personality changed. He slipped dramatically in and out of lucidity with little warning. Frankly, he often turned angry and cruel — the polar opposite of the man he was before his diagnosis, polite and exceedingly respectful. But Lisa vowed never to leave his side. When the end was near, she stayed by his bed, exhausted emotionally from the impending loss, physically from the constant transferring of Patrick between his bed and wheelchair, and mentally from refusing to sleep, unwilling to let Patrick slip away while she wasn’t awake.
In a blog post titled “The Final Days” Lisa describes this experience in agonizing, heart-shattering detail. It gives a window into the toll the loss of her love and partner took on Lisa.
Lisa is open about these impacts, including her struggle with PTSD stemming from the experience. She’s open because she wants others to know that it’s okay to seek support and that (in large part, thanks to her) there are now new avenues to do so.
“The idea that I might be helping someone to feel like their voice matters and that they have a safe place to talk about whatever they need to is incredibly rewarding,” says Lisa. “I do not want people to suffer in silence like I did.”
In 2019, Lisa began co-hosting the Brain Tumor Support Conversations with GBM patient, Adam Hayden offering a virtual platform where patients and loved ones can talk about the feelings and emotions that accompany any aspect of the brain tumor experience in a safe, welcoming environment.
The program was specifically developed to meet some of the unmet needs Lisa and Adam had encountered during their own experience, including the desire for peer-to-peer support, easy access to the group, and a ‘big tent’ audience.
“I hope that people who may have once felt like they were walking this path alone start to feel connected and supported,” she says. “We want to reach as many people as we can, and provide as much support as possible. Feeling like no one understood what I was going through was one of the worst parts of my own experience during Patrick’s treatment and after his death, and if we can lessen that burden for people, that’s what it’s all about for me.”
Lisa is “moving from pain to purpose” and FUELING SUPPORT for brain tumor patients, survivors, caregivers, and family members.
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