Sharing Stories of Healing and Hope

Blake, right, hugs his doctor, John M. Tew, MD, Clinical Director of the UC Gardner Neuroscience Institute, at an event in 2005. Photo by Mark Bowen.

Blake, a survivor of a medulloblastoma, is in law school, engaged to be married, and approaching the seventh anniversary of his diagnosis. Joe, a survivor of an oligodendroglioma, exercises daily, assists with support groups, and has marked his sixth anniversary. And Charlene, a survivor of a glioblastoma, writes song lyrics, takes care of her mother, and gives thanks daily as she approaches her sixth anniversary.

If it’s January, then it’s that time of year when we check in with current or former patients who have shared their stories of healing and hope for our Web sites. It is an exciting time, when we find out how they are doing, what they’re up to, and how their experience with disease or injury continues to shape their lives.

All is well with Jeff (ruptured aneurysm/airway reconstruction) and Christine (stroke). Courtney (spinal trauma) is a student at the University of Cincinnati, and Andrew (neurotrauma) just graduated from UC and is looking for a job. Matt (neurotrauma) has begun working as an occupational therapist assistant, a career he never would have considered prior to his injury.

Patients who tell their stories publicly have a few things in common. They tend to be extroverted and interested in the science behind their healthcare. They also share an altruistic streak, in that they want their stories to inspire and give hope to others. Inevitably, they are grateful.

“You can use my story in any way that helps someone have hope with Parkinson’s disease,” Jim wrote in an e-mail. “Miracles do happen.”

Some patients, like Blake, use the opportunity to express thanks.

“Objectively, getting the tumor was a terrible situation,” Blake said on a recent visit to Cincinnati. “But God has brought the best out of it in giving me a life direction, waking me up to the wisdom that there is more to life than living for what you want to do.”

Outcomes aren’t always perfect, and in telling our patients’ stories, we don’t minimize side effects or unpleasant residual effects from their disease or treatment. We do encourage patients to share their methods of coping with illness, uncertainty and discomfort. And they routinely astonish us with their ability to turn illness or injury into an opportunity for self-discovery and renewal.

Blake’s physical trials have continued since his surgery and the radiation treatments that followed in 2004. The radiation treatments impacted his thyroid and caused fatigue, which likely will remain a lifelong companion. Blake needs at least 10 hours of sleep each night, which can be a challenge for someone in law school.

Blake continues to find strength in God, however, and the setbacks are minor in the face of his determination to pursue a law career devoted to the eradication of human trafficking. “One of God’s callings is to care for the widow, the orphan, and the oppressed,” he said. “What does God require of man? To act justly. I think that encapsulates what I feel, that pursuing justice is the essential mission in life. It is the calling I feel.”

Every patient’s story is unique, of course, and individual patients may respond to treatment in different ways. Outcomes are influenced by many factors, including a person’s unique genetic makeup, and may vary from patient to patient. Not all patients survive.

The UC Gardner Neuroscience Institute would like to thank all of the individuals who have shared their experiences for the benefit of those who inevitably will follow in their footsteps.

— Cindy Starr

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