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.”
Christina and her mother Rezia discovered the Brain Injury Association of Michigan (BIAMI) four years ago. They have been taking advantage of BIAMI’s programs and services ever since. Christina and Rezia both value the educational workshops at the BIAMI Fall Conference. Christina, however, said the conference’s dinner dance for brain injury survivors holds a special memory for her.
“The first time I danced – since the accident – was at the BIAMI Fall Conference,” she said. “I saw a guy in a wheelchair dancing. I started to cry, then I said to myself, ‘if he can do it, I can do it.’ So I started dancing. Then my mom started crying.”
It was a moment of deep emotion for Rezia, who had been at her daughter’s side through every phase of her recovery from a TBI sustained in a 2001 auto accident. Christina’s car was T-boned by another driver, then flipped and hit another car. Christina was so severely injured that doctors told Rezia that her daughter showed no brain function and was not breathing on her own.
Rezia and other family members began a long vigil at Christina’s bedside at Henry Ford Hospital; talking to her, singing to her, and putting up photos of her 3-yearold son, Cortez. Christina spent five months in a medically induced coma.
When Christina was finally discharged to Lakeland Center for rehabilitation, she began the long struggle to put her life back together. She had lost much of her hearing as well as many significant memories, such as the birth of her son. It took her two years to be able to walk again.
One day, after Rezia broke down in tears at the doctor’s office, Dr. Gilbert Ladd recommended that they both check out BIAMI. Mother and daughter have since gained both knowledge and courage from joining the Detroit chapter and hearing the stories of other survivors and their families. “Every time I go to BIAMI everyone is so nice,” says Christina. “I can relate to everyone there. BIAMI brings everybody together, helps me to understand about my condition. I feel at home when I’m there.”
Rezia credits BIAMI for giving her the support and information she needs to be an informed caregiver. “I knew how to be a mom,” said the mother of four, “but I didn’t know how to be a caregiver to someone with a brain injury. I didn’t know how many problems there would be, especially with the insurance company.”
Christina still struggles with memory problems and pain from her injuries, but is grateful for her progress and her time with her family. “I’m so happy to be able to spend time with my son,” she says. “He’s 16 years old now. I‘ll be able to see him graduate from high school. I like to teach him about life, about God. I want to teach him to pray and to be forgiving. When Cortez was younger, he was angry at the other driver who ran into my car. I told him, ‘that’s why they call it an accident.’ That driver didn’t cause the crash on purpose.”
Because she is a parent herself, Christina says she can appreciate her mother’s care for her so much more. “I don’t know what I would do without my family, especially my mom. I don’t know if I could do what she has done for me.”
“I know I’m never going to be the same as before the accident,” adds Christina, who still faces surgery and deals with headaches and hip and ankle pain. “But, as I tell other people…continue to pray, stay strong and stay positive. Do what your body allows you to do.”
As for Rezia, she says, “BIAMI gave me my daughter back; BIAMI gave me my life back. It’s the only place I’ve found where it’s okay to be sad, okay to be angry and okay to be happy.”
Jennifer says that love and support from her husband and parents were the keys in her recovery from the 1996 auto accident that fractured her pelvis, lacerated her kidneys and spleen and wiped out two and a half years of her memories. She couldn’t remember her college graduation, her new job or her wedding to her husband Mark two years earlier. She still cannot.
Waking up from a month-long coma, Jennifer introduced her husband as her boyfriend to everyone who came into her hospital room. Mark was disappointed, but unfazed. When the couple realized that Jennifer’s memories of their wedding were lost forever, they decided to make new memories, renewing their marriage vows at a second ceremony in 1999.
First at Hurley Hospital, and later at Willowbrook Rehabilitation Services, Jennifer worked hard to master the skills she needed to regain her independence. She spent three years at Willowbrook, relearning how to shower, brush her hair, use a toothbrush and walk. She credits her family’s persistent encouragement with motivating her.
“Mark would always say, ‘You are doing great, just do a little bit more now, just one more thing’,” said Jennifer. “I would get frustrated and angry. I would tell him, ‘don’t give me that B.S. It’s always just a little bit more’.”
Jennifer has recovered very well physically, but she still struggles with memory problems. She relies on her planner, a four-inch-thick binder stuffed with notes and reminders, to structure her days.
A few years into her recovery, Jennifer discovered the Brain Injury Association of Michigan (BIAMI), thanks to her mother’s research.
“My mom is a resourceful person,” she said. “She makes things happen. When it seems like nothing is out there, she finds something.”
The “something” that Jennifer Pilon’s mother found was BIAMI’s Flint Chapter and support group. The Pilons began attending regularly. BIAMI opened the door to educational resources such as the annual Fall Conference.
“BIAMI’s Fall Conference is a great resource for us,” said Jennifer. “I always return from the conference with loads of information and new ideas to try.”
Jennifer has attended every Fall Conference since 1999, except for the year of her daughter’s birth, only because Kimberly was due on the date of the conference that year. Kimberly is now a busy third grader. Like many children of BI survivors, Kimberly helps her mother significantly. Kimberly tells her, “Mom, you may not remember this, but I have Girl Scouts today.”
Previously, Mark was active as an officer of the Flint Chapter and on the Board of Directors. He sees BIAMI as “a terrific source of information and resources.” He advises caregivers to take care of themselves, too. Caregivers, he says, need to become advocates, by learning about the limitations of brain injury and possibilities for recovery.
“Family members need to see their role in brain Injury recovery as part of a marathon,” says Mark. “Slow and steady progress is best.”
David’s traumatic brain injury journey began on May 30, 2003, when the 16-year-old student was driving to a friend’s house. Unsure of the directions, David was on his cell phone with a friend when he missed a stop sign and was hit on his side by a van traveling on the intersecting road. David was thrown 50 feet into a field and bystanders were convinced that he was fatally injured. When an off duty police officer driving by stopped to assist, he found the unconscious young man bleeding from his nose and mouth, and he heard what he thought was David’s last breath.
After being airlifted from Dansville to Kalamazoo, David spent the next two weeks at Bronson Methodist Hospital, where he showed no signs of waking up from his coma. A neurosurgeon suggested custodial care, but David’s family resisted that course and instead opted for Mary Free Bed Hospital where they had their first glimmer of hope – being told their still unconscious son would need gym clothes!
That hope grew as the family heard about the intensive OT, PT and speech therapy schedule that David would begin the following day. However, even with that rigorous therapy, it took months before David’s first purposeful movement, a subtle one yet a sign that recovery was possible. Throughout his five-month stay at Mary Free Bed Hospital, David worked endlessly with his therapists, learning how to walk, speak, and function. Yet even when discharged, he still was not ambulatory and his speech remained unintelligible.
During outpatient therapy through Hope Network, David and his family were introduced to a new innovative treatment, AxioBionics. AxioBionics is a wearable electrostimulation therapy that has given David back some of his independence. Now, with increased mobility, David has been able to pursue recreational activities and focus on living. He continues to participate and volunteer in hippotherapy (horseback riding), as well as physical therapy, occupational therapy, speech therapy, and his favorite – music therapy.
David has also recently become more involved with the Brain Injury Association of Michigan. While he and his mother have attended BIAMI conferences for years, he now plays a more significant role in BIAMI as Vice President of the Capital Area Chapter of BIA. David told us that he loves the opportunity to work collaboratively with other board members, and enjoys socializing with people who “speak my language.”
David’s life has been an extraordinary journey. He expressed heartfelt thanks for the support and care he received from his family and friends, the BIAMI, and physiatrist Edward Dabrowski, MD. In David’s words, “The secret to life is, no matter how good I (or we) are, no one can succeed alone.” David’s positive attitude and unwavering support from family and friends have helped him grow into becoming an effective self-advocate and an advocate for other individuals with brain injuries.
In Her Own Words…
Before the injury, my life was always busy. I was a single parent to three kids, working both full and part time, and even going to the gym. I loved to read and crochet, and was always interested in learning new things. That was before the injury.
In October 2001, I was driving to my aunt’s home when a car coming from my right failed to stop at a stop sign and broadsided my vehicle. My head instantly shot forward and then the force of the air bag just as quickly pushed my head back. I remember being transported to St. John’s Hospital in an ambulance and at some point losing consciousness. Once stabilized, I was told I had a traumatic brain injury plus an enlarged pituitary gland.
Since my injury, the challenges have been many and frequent. I have more headaches than I care to mention. I need to be given specific instructions on how to get to and get back from a place I have never been before. I have short-term memory loss and bright lights bother me, so I’m forced to work in a low-light environment. I often can’t focus enough to complete tasks, so I have to do a little at a time.
I can’t spend hours reading books as I used to. I become irritated if I’m around a lot of noise. I sometimes become easily frustrated. And I feel ashamed when people ask why I can’t do certain things. I respond that I have a TBI, but I do get tired of having to explain my limitations. I look normal – as do many TBI survivors – but it’s a constant struggle to keep a positive attitude and not focus on what I can’t do. I have some hearing loss in my right ear and some loss of peripheral vision in my right eye, which gets a little worse every year. I still think about the “what if’s” – especially if I had been offered resources when I was released from the hospital that day and not just sent home with pain meds.
As far as advice to other survivors, I would say that being patient and believing in yourself is an important start. So is not being afraid to ask for help. You learn that here are good and caring people in the world who want to see a TBI survivor thrive and prosper through their journey in life, as I have found in the staff and other survivors at the Brain Injury Association of Michigan. They are a Godsend.
In His Own Words…
Before my accident, I owned my own insurance agency and was an award-winning district manager with Colonial Life Insurance Company. I was also completing a master’s degree at Central Michigan University, involved in a relationship, and looking forward to a bright future!
On October 5, 2010, my life changed forever. According to a coworker with me in the car – I have no memory of the event – we were on I-96 when we noticed traffic stopped for an accident that had already occurred. As I slowed down, a car going 80 MPH hit us from behind. My vehicle was then pushed into the next lane where another vehicle hit us at 70 MPH, and then a third one careened into us from behind.
Original reports stated that I “died” at the scene. Fortunately, a passing nurse helped revive me, and during the ambulance ride three more resuscitation’s were necessary before arriving at Sparrow Hospital and immediately being taken in for emergency brain surgery. My mother, who arrived at the hospital shortly thereafter, was told I had one of the most severe brain injuries they’d seen and was not expected to survive the night.
The hospital staff further informed her that I’d been placed on a ventilator, had a tracheotomy, and had a feeding tube placed. The critical injuries I sustained included a broken back and neck, a damaged spleen which had to be removed, a collapsed lung, a stroke, seizures, neuropathy, shattered ribs, a blood clot in one leg, paralysis on the left side, and being in a coma. Post-surgically, I experienced hearing loss, nerve damage that affected vision, bladder problems, short term memory loss, cognitive problems, speech issues and balance problems.
These deficits were expected given my initial Glasgow Coma Score (GCS) was a 3/15. Research indicates that after 24 hours, only 7% of individuals with a score of GCS of 3 or 4 will recover with at least moderate disability.
After over a month in a coma, I began a miraculous recovery process at Special Tree Rehabilitation System in Romulus, Michigan where I was a resident for almost seven months and had to relearn the basic functions from dressing and bathing to walking and talking.
My in-patient therapy at Special Tree was so remarkable, that at my discharge on April 12, 2011, 30 employees, including the owner of the company, stopped by to wish me good luck!
Today, even after additional outpatient therapy and medical treatment, I still deal with deficits – hearing loss, short-term memory problems, difficulty finding the right words, anxiety, and depression. Throughout by recovery, my mom and sister have been my strongest allies. Were it not for them, I might not have gotten involved with the BIAMI and become the Vice President of my chapter, where I’m able to lend support to others.
For Brandon’s website click here.