Survivor Story: Pat S.

Pat’s journey with her brain injury began in 2001. After suffering from a sudden debilitating headache, she went to the hospital where doctors told her she had a leaking aneurysm. Blood was slowly seeping into Pat’s brain, and she was at risk of dying. The news left her devastated, but determined to begin her long, uphill battle towards recovery.

Pat remained in the hospital for five weeks while undergoing several brain surgeries and treatments. Her stroke left her with weakness on her left side, an attention deficit disorder, and a mood disorder with depression that would be diagnosed two years later.

After returning home, Pat struggled to adjust to her life with a brain injury. She had to undergo multiple types of therapy to help her body and mind adjust to “the new Pat.” Through her occupational therapy, physical therapy, speech therapy and counseling, Pat began to get better. She learned to drive again and tried to return to her job as a preschool special education teacher, but found it to be too difficult since her brain injury affected her thinking and focusing. Changes after her injury also created tension between her and her husband, which ultimately led to their divorce.

“People often ask me how I could do this, meaning going through recovery after my stroke,” says Pat. “My answer is always this – how could I not! I mean considering the alternative, giving up is not an option!”

Despite the dissolution of her marriage, Pat continued on her journey towards recovery. While she was making progress on her own, she realized she needed more support and assistance from those who were facing similar challenges. Her counselor suggested she contact the Brain Injury Association of Michigan (BIAMI). She found her local support group and went to her first meeting, where she finally found what she had been seeking.

“At my first meeting, I felt like I’d come home,” explains Pat. “These were people who understood the new me.”

Pat made fast friends within the support group. They continue to provide each other with not just emotional support, but help with day to day errands as well.

“Because of my injury, I became single, had to retire and live by myself,” says Pat. “But, I’ve learned to accept the fact that life with an invisible injury has its challenges. I’ve actually found blessings in my injury, and it’s much easier to face with your support group behind you.”

As a result, Pat now faces each day with positivity and a new lease on life. She participates in panel presentations to different organizations through the Disability Network Southwest Michigan , so that others can understand brain injuries and the challenges that survivors face. Although her life has changed since her brain injury, she has made the most of it.

“I’ve learned that I can’t take my life for granted,” explains Pat. “Each day is a gift.”

Survivor Story: Kathy M.

Kathy has 30 years of fond memories from her involvement with the Brain Injury Association of Michigan (BIAMI). Although she struggled with her brain injury early in her life, Kathy has become a shining example of facing a brain injury with determination and a sense of humor.

Kathy was 15 when she was injured in a dune buggy accident. Even though she was hospitalized for seven months and had to relearn everyday tasks, she was expected to fully recover from her accident. Her supportive family played a major role in her recovery. With their help, she graduated from high school and then went on to college. Her parents encouraged her to go to a community college part time and work her way up to full time. When she accomplished that, they allowed her to move on to Aquinas College. The college helped tremendously with the accommodations she needed. She also started volunteering for the BIAMI (known as MHIA at that time) by selling golf raffle tickets. She eventually continued on to Michigan State University where she graduated with a bachelor’s degree in Social Work.

“I realize that college may not be best choice for everyone with a brain injury, but my college years were some of the best years of my life,” says Kathy.

Kathy got the resources she needed during college. With her determination, and her family behind her, she was able to get her degree. Kathy had a wake-up call when she came home and couldn’t find a job, despite her schooling. Her mom had been making connections through BIAMI’s Novi support group and realized that Kathy needed further resources due to her brain injury. They scheduled testing that confirmed although she had accomplished so much, she still was experiencing negative effects from her brain injury.

With the help of attorney Wayne Miller, she started a four-year battle with her insurance company who did not want to pay auto no-fault. Because Kathy had graduated from high school and college, they argued that she had no lasting ill effects from her injury. Thankfully, Kathy and her attorney won a settlement against the insurance company. Her settlement has allowed her to get the resources she needs.

For the last 10 years, Kathy has shared her journey with her injury as a standup comedian. She has also brought awareness about brain injury to elementary schools with the message to treat others the way you would like to be treated yourself – reminding students that we are all more alike than we are different. She shares with them the difficulties it took to overcome her injury, always with a sense of humor.

“I’ve always loved making people laugh,” explains Kathy. “What better way to connect with people about brain injuries than to make them laugh?”

Today Kathy is still very involved with the BIAMI. She has taken part in the Bridge Walk, Capital Day, and Spring Fling just to name a few. She is also very involved in the recreational activities provided by the Macomb Chapter. Kathy is grateful for Rehab Pathways and the help they provide so that she can live independently. She also loves being employed at Cassell & Associates.

“Every brain injury is different and just a fraction of an inch can make such a difference in your outcome,” says Kathy. “The kind of support, resources and activities that BIAMI provides make a world of difference for survivors like me.”

Survivor Story: KJ G.

Survivors of brain injuries face the unique challenges in their daily lives with great determination, strength and perseverance. Fourteen-year-old KJ and his mom, Mary, are no exception. Mary and her husband, Kenneth, have two children, Haylee (19 years old) and KJ (14 years old). Both children are caring and kindhearted beyond their years, but KJ suffered a trauma as a baby that would last a lifetime.

Twelve years ago, Mary was playing softball for her work team while her husband and children looked on from the stands. Suddenly, a foul ball sliced toward their direction and struck 18 month-old KJ in the head, resulting in a traumatic brain injury (TBI).

The first few years after KJ’s injury were difficult as he struggled with balance and behavioral issues. Like many people dealing with a TBI in their family, Mary also struggled as KJ’s main advocate. “KJ had to relearn the simple daily skills a child his age has already mastered, from eating to walking and everything else in between,” explained Mary. “I felt so alone trying to find the next answer, the new doctor, or the newest information. I stayed awake many nights just to make sure he was still breathing.”

Making sure KJ had all the help he needed was a constant struggle for Mary. When KJ started attending school, educators did not understand his TBI. His teachers did not know how to handle it when he shut down emotionally, and oftentimes made the situation much worse.

After several problematic incidents, Mary decided to move to Michigan in the hopes of getting him into a school that would better understand his TBI. Mary did her homework, and found a school that fit his needs.

“I found a school with the sweetest teacher I have ever encountered, Mrs. Carol Stacy,” said Mary. “Not only did she understand what I was going through, but she was also walking in the same shoes as me. They say people are put in our path for a reason, and I believe she surely was.”

While Mary had finally found the educational support that KJ needed, she also found an advocate in the Brain Injury Association of Michigan (BIAMI).

“I found the BIAMI through Diane Dugan, another angel,” explains Mary. “Help and support started flooding in. I felt so blessed! I was now learning to breathe again, and was no longer alone.”

Just when it appeared that things would continue to get better, they got worse. The school KJ and Mary had grown to love closed, and they were back to square one in finding the right environment for KJ. Mary again struggled to help educators understand KJ’s TBI. After many shut downs, suspensions and misplaced diagnoses, KJ was charged with assault after hitting a teacher during an emotional outburst.

However, the judge in KJ’s case listened intently to testimony from KJ, who explained in detail the symptoms and particular challenges of his TBI. It was after this explanation that the judge dismissed the case completely.

“He won both of his court cases by telling the truth and being a strong boy,” explains Mary. “He has a traumatic brain injury and he is the best he can be, and more! He is understood by some, but misunderstood by so many.”

With KJ now in 8th grade and moving onto high school next year, Mary is understandably worried about the challenges that will accompany that change. She will have to again be his main advocate, making sure that educators understand his TBI, and using the strategies that have worked for him. KJ, though, continues to demonstrate strength in overcoming the obstacles his TBI has brought him and is determined to do his best. One thing is for certain, both KJ and Mary will face the challenges they come up against with strength and perseverance.

Survivor Story: Steve C.

“Remember the old TV show ‘Gilligan’s Island’?,” said Steve. “Remember how Gilligan would get hit on the head with a coconut and lose his memory? Remember how the Skipper would take him to the Professor and the Professor would say, ‘Just drop another coconut on his head, and he will be fine,’ and sure enough, that second coconut brought Gilligan back?”

“That’s not what happens,” said Steve. “That is so not what happens.”

Steve knows the struggles of recovery from harrowing personal experience. He has fought his way back for nearly 30 years, ever since a youthful trek to Windsor, Ontario, left him with a traumatic brain injury. After his auto accident there, he spent 11 days in a coma and five months in the hospital and in therapy at the Rehabilitation Institute of Michigan at the Detroit Medical Center. He came home just before Thanksgiving. Despite his injuries, he appeared to be fine. It was hard for everyone – including Steve himself – to understand that his brain that had suffered severe damage.

After graduating from a vocational school in computer science, and marrying in 1988, Steve struggled to deal with stabbing headaches, vertigo, and mood swings into depression and despair. Stress of a job loss in 2008 and dealing with his TBI contributed to the end of Steve’s marriage. He had worked hard for many years to provide for his family, not fully understanding the scope of his own brain injury or how no-fault insurance works.

When his physiatrist, Dr. Sherry Viola, asked him who his nurse case manager was, it was an eye-opener for Steve. Until then, he did not know he should have a nurse case manager who would share expert knowledge about both traumatic brain injury and no-fault insurance with him. Linda Leone became Steve’s nurse case manager. She became the liaison between him, his care team and the insurance company. Having someone in his corner was a key to turning his life around and getting the help he desperately needed.

He was divorced, jobless and practically homeless. Linda Leone referred him to Community Links (now part of NeuroRestorative Michigan), where he found help getting an apartment, furniture and furnishings.

“People always ask me if I wish I had known more about auto nofault sooner,” said Steve. “I say ‘yes and no.’ It would have been easier if I hadn’t had to struggle for so many years on my own, but in some ways, it made me stronger.”

Steve is the former president of the Wayne-Oakland Chapter of the Brain Injury Association of Michigan, where he continues to share his “never give up” message with other TBI survivors and family members. Steve found that sharing experiences with other TBI survivors helped him understand what had happened to him. He knew that it was his turn to give back to other people who were suffering.

“Being part of BIAMI is awesome,” said Steve. “I never would have imagined that I would be a chapter president one day, helping people who are facing many of the same problems I faced. I volunteer for BIAMI because I can share what I have learned about brain injury and it helps me to help others.”

Survivor Story: Dan M.

Dan was knocked to the ground when an improvised explosive device (IED) exploded near his US Army unit in Afghanistan in 2006. He suffered back and neck injuries and- as later discovered- a traumatic brain injury (TBI).

Headaches, balance issues and disorganized thinking were compromising his performance. Following a medical discharge, he returned home to his family in Arcadia. Dan didn’t tell his wife about the IED, just that he was getting treatment for migraines. However, Lezlie knew that something more was wrong.

“Dan was different,” Lezlie remembers. “He was not comfortable being around people. He was angry. He was drinking more. I knew he needed help. Our kids had to deal with their dad and stepdad while I was at work,” said Lezlie. “The kids became the parents. They would say, ‘Dad, don’t forget to take your medicine,’ or ‘Dad, remember to turn off the oven’.”

Lezlie said that the strain of dealing with her husband’s TBI and post-traumatic stress injury nearly ended their marriage. “We almost filed for divorce three or four times,” she said.

When the family met Major Rick Briggs (US Air Force, retired), then the Veterans’ Program Manager for the Brain Injury Association of Michigan (BIAMI), Dan came to see that his issues were related to his encounter with the IED and his TBI. It was a trust issue that prevented him from seeking help sooner.

“Men and women coming out of the war zone are already in a precarious mental state,” says Dan. “You have to gain their trust before you can try to help them.”

Rick put the family in touch with Eisenhower Center, where his problems were finally addressed. At the BIAMI Fall Conference in Lansing, the couple met Dr. Debby Feinberg, of Vision Specialists of Michigan, who prescribed “prism” glasses for Dan, which he says “help the brain perceive the information that the eyes are sending it.”

The couple’s 13-year-old twins, Anthony and Kaona, were just toddlers when their father came home. Along with their stepbrother, Marcus, and stepsister, Jordan, they learned compassion by helping their dad. Anthony used to be sad that his father couldn’t play baseball with him “for more than about ten minutes.” He was frustrated to always have to remind Dan to do things. Now, Anthony enjoys spending time with his dad on his grandparents’ farm. Kaona had to explain her father’s behavior to her peers. “He’s just yelling at me because he wants me to understand something,” she remembers telling her cousin. Now, father and daughter enjoy drawing and making pottery together. “Dad and I are artists,” says Kaona. The teens say they would tell other kids in similar situations to “never give up on your parent, spend time with them, let them know you love them.”

Couples counseling has helped their marriage. “Go for counseling yourself, if your spouse will not go,” Lezlie tells other spouses. “Remember that the brain injury survivor needs more time to process information. Sometimes people think that the survivor isn’t responding, but he – or she – is just taking time to process. Don’t expect an answer right away.”

The family’s challenges are not over, but Lezlie says that they are grateful for the help they have received and that “we can always call on BIAMI for help.”

Survivor Story: Pam H.

Pam is a living example of courage pushing away fear. Pam is a TBI survivor who has fought her way back from the ravages of brutal violence to a place of healing and hope. She finds meaning for life in her efforts to help others, and credits the Brain Injury Association of Michigan (BIAMI) for helping her put her life back together.

Pam woke up from a two-week coma in May of 2011. Although overwhelmed to find her body hooked up to machines, Pam did not have amnesia. “I knew who I was and I knew what had happened to me,” she said. Pam was the victim of a vicious attack by a former domestic partner.

Pam hovered near death, with multiple stab wounds. She had suffered a hiatal hernia, spine damage and a displaced hip. After two surgeries to repair the damage,and several weeks in Harper Hospital, Pam began the long journey of recovery. She spent a year in physical therapy at the Detroit Medical Center (DMC), first using a wheelchair, then progressing to a walker, and then a cane.

It wasn’t until about four months after the attack that the cognitive effects of her brain injury began to manifest themselves. Her speech, concentration and thinking had slowed down. An MRI confirmed a traumatic brain injury. That’s when Pam called BIAMI.

Diane Dugan, BIAMI’s Program Outreach Coordinator, helped Pam find the resources she would need to move forward. Diane gave Pam the Michigan Resource Guide (MRG), which Pam has used to explain brain injury to doctors, judges, her union and even the Social Security Office. One judge read from the MRG during a Social Security hearing and thanked Pam for educating her on brain injury.

Diane put Pam in touch with BIAMI’s Detroit Chapter, led by Roderick Arnold, also a TBI survivor. Pam has been an active chapter member ever since, sharing experiences with other TBI survivors and family members. According to Diane, “Pam has made remarkable progress during her recovery and is an incredible advocate for herself and others with brain injury. She has recruited others to attend support groups and to contact us.”

Last September, Pam attended BIAMI’s highly regarded Fall Conference in Lansing. “It was a huge challenge to deal with meeting all those people,” said Pam, “but going to that conference gave me my self-esteem back. As a TBI survivor, you want to be a whole person. You want to work. You want to be who you used to be.”

Pam worked as a product control coordinator for an auto manufacturer before her injury. She was constantly multitasking: scheduling workers, contacting vendors and training new employees.

“My ability to do that job was washed away by my brain injury,” she said.

Through Michigan Rehabilitation Services, Pam has taken classes to train for other work, but is unable to work full-time. Now on disability, Pam volunteers for various domestic violence survivors’ groups, crime victims’ groups and for her church. Doing readings at church has helped her learn how to speak in front of groups again. She was recently cleared to drive again. Through BIAMI, Pam has become active with a consumers group regarding the Affordable Care Act.

“People need to know that you can get a brain injury from an assault, not just from a car accident and that not all domestic violence injuries are visible ones,” says Pam. “If you have a brain injury, get in touch with BIAMI. It is a great place to start.”

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