Living with a disability often brings unexpected challenges, but for some, the battle becomes a lifelong journey filled with extraordinary moments of resilience. Today, we’re sharing the story of Kerry Jenkins, a true warrior in our community, who has faced one of the most unique and extreme cases of epilepsy ever documented.
Her story begins with a routine visit to the epilepsy monitoring unit, where Kerry went in for a 24-hour EEG (a test to measure electrical activity in her brain) that would last several days. Everything seemed normal at first, until an unexpected turn of events occurred. Early on the morning of day six, Kerry had a seizure on her hospital bed. Her heart stopped beating, and hospital staff rushed to her side, preparing to use defibrillator pads to restart her heart. But before they could act, something incredible happened—Kerry gasped for air, and her heart started beating again.
This incident is part of a much longer journey of sacrifices and hardships Kerry has faced throughout her life with epilepsy. Her journey is one of hope, perseverance, and incredible strength. And now, she’s sharing her experience with our community to remind others that even in the face of unimaginable odds, we can keep pushing forward!
The Early Years
Kerry’s journey with epilepsy started at a young age. At first, no one noticed the signs, not even Kerry herself. She would occasionally stop mid-conversation, and her eyelids would flutter before continuing as though nothing happened. It wasn’t until her aunt, a nurse, recognized these episodes that they realized what was going on; Kerry was having about 100 absence seizures a day (a type of seizure involving a brief lapse in awareness, during which a person may "blank out" or appear to be staring into space)
By the time she reached age 12, her seizures were more controlled, and doctors predicted that they would either go away or get worse after puberty. Fortunately, the seizures subsided, and for many years, Kerry lived a seizure-free life. She got married, started a family, and everything seemed to be falling into place.
When Epilepsy Strikes Again
However, at age 32, everything changed. While driving to pick up her kids, Kerry experienced a brief loss of consciousness. One minute, she was at a stop sign, and the next, she found herself two blocks away with no memory of how she got there. From that point on, her seizures returned even worse than before. She experienced various types, from grand mal (a type of tonic-clonic seizure involving loss of consciousness and violent muscle contractions) to temporal lobe complex seizures (a type of focal seizure that begins in the temporal brain region but can spread to the whole brain).
With over 15 seizures a month, Kerry could no longer live alone, losing a large portion of her independence. Still, nothing could have prepared her family for the extreme seizures she would soon experience for the next 8 years of her life.
The Heart-Stopping Seizures
One day, in the presence of her loved ones, Kerry froze suddenly, collapsing onto the floor. She stopped breathing, and her lips turned blue. Her sister’s boyfriend at the time was a trained firefighter, and he rushed to perform CPR. But before he could start, Kerry gasped for air. This was the beginning of a challenging chapter in her life where she experienced many losses; she lost her job, her marriage and most importantly, she lost custody of her daughter for over a decade.
For eight long years, Kerry continued to endure these non-breathing seizures once every month. It wasn’t until she was at the epilepsy monitoring unit, where nurses attempted resuscitation, that her doctor finally gained some clarity on her condition. Her seizures occurred in the brain area that controls her heartbeat, causing her heart to stop each time she seized. Others who experience a similar type of seizure often succumb to SUDEP (Sudden Unexpected Death in Epilepsy). However, what makes Kerry’s case truly unique is that she would always come back to life.
Finding Hope
With greater clarity about her specific case of epilepsy, doctors placed a pacemaker in her heart to keep her alive in case it stopped due to her seizures again. She also underwent an experimental procedure at Toronto Western Hospital, where doctors implanted a deep brain stimulator (DBS) in her brain. Although this device is typically used to treat Parkinson’s disease, it has shown promise in helping epilepsy patients. The device sends pulses of electricity to her brain every few minutes to help stabilize her condition.
Four brain surgeries later, Kerry has been diagnosed with some brain damage, but the DBS has greatly reduced her most dangerous seizures.
Today, while she still experiences some mild seizures, the terrifying episodes of her heart stopping have subsided.
A New Chapter: "Lightning Warrior"
Through it all, Kerry has remained optimistic and deeply resilient. Her doctor, who has spent years studying her rare case, praised her for having "one of the worst cases of epilepsy but the best mental attitude toward the condition" he has ever seen. He encouraged her to write an autobiography, which she promptly titled Lightning Warrior.
Kerry’s story of resilience and determination shows her amazing fighting spirit. With the support of her family, especially her current husband, Kerry continues to inspire everyone around her. Their love story is a testament that love knows no boundaries, even in the face of disability.
Inspiring Others in the Community
Kerry’s journey is far from over. As she works on her book, she pushes forward in life, hoping to motivate others experiencing epilepsy and other disabilities in the community.
If you would like to learn in more detail about Kerry’s specific experiences and perspectives, please stay tuned for the release of Lightning Warrior. We will announce the details of its release on this platform as it becomes available!
Acknowledgement
A deep appreciation and heartfelt thank you to Kerry for being open about sharing her incredible journey and inspiring those facing similar battles.