Bill “Trout” sustained a brain injury from a cardiac arrest and a fall on March 18, 2010. Kathy, his wife of 20 years, had some idea of how their lives would be turned upside down. (Bill’s mother had also suffered an anoxic brain injury following a heart attack 15 years earlier.) However, she could not know what new directions her own life would take.

Kathy became a caregiver that day, a role that would demand her tenacity, her organizational skills and her passionate advocacy. She found an ally in Kathie Sell, Information and Resource Coordinator at the Brain Injury Association of Michigan (BIAMI).

An internet search led her to BIAMI. “Kathie Sell became a ‘go to’ person for brain injury resources,” she said. “I felt a connection with Kathie, perhaps because she, too, has a family member who has had a brain injury.”

Bill spent two months in St. Joseph Mercy Hospital, two months at Mary Free Bed Hospital, nine months at Lakeland Center, and three months in an adult foster care home. He also worked with the Recovery Project where, despite the behavioral problems that can be common to brain injury survivors, Kathy said, the staff “just rolled with us.” At the same time, Bill was also under the care of Dr. Owen Perlman, another excellent resource.

For over 20 years, Bill had been a successful automotive sales manager. Now he worked just as hard at his “new job” of relearning speech, coordination and balance. And Kathy was literally right by his side, visiting him every single day since his original cardiac arrest and fall.

Then, 16 months into his recovery, a second heart attack tragically ended Bill’s life. He was 44 years old.

“Bill never gave up,” said Kathy. “He pursued every phase of his recovery. He was able to walk assisted with a walker and was able to talk. He was oriented to person and was beginning to be oriented to time and place. He was just beginning to initiate activities, suggesting, for example, that we take a walk instead of just passively going along with a plan I made. That was exciting to see.”

To honor Bill’s strength and spirit, his wife and family established the William C. Smith Doctor of Physical Therapy Scholarship at the University of Michigan – Flint. After Bill’s death, Kathy decided to start down a new path, and is now completing her master’s degree in occupational therapy at Eastern Michigan University. Last fall, she served on the committee that planned the 2014 BIAMI Survivors’ Conference.

“I was glad to hear the speaker on disability rights at the (November 2014) Survivors’ Conference,” she said. “Having that speaker showed that the association is being more responsive to families who do not have auto no-fault benefits.“

Kathy believes that family caregivers need to be “center stage” with survivors. She would like to see patients and family caregivers on panels when new care modalities are discussed at future educational conferences.

Kathy wants other families to know that “you, as the family caregiver, are the coach. The others are on your team. Those care providers who understand that they are players on the team – and not the coaches – are excellent.”

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