LECLAIRE, Iowa (KWQC) - Bob and Sheila met in College.
“He was that guy who talked to everybody. You know he was Mr. Social,” says Sheila smiling.
Bob Boyd grew up in Clinton and couldn’t walk a block down the street without running into someone he knew. And everyone called him Bobcat.
Sheila and Bob were friends for about two years before they started dating.
“He always jokes around that he's like, I knew I was going to marry you the second I saw you.
So he knew before I did,” says Sheila her voice resonating with a smile.
This summer will mark their 20th wedding anniversary.
“The happiest days I would say are the days our (three) sons were born,” says Sheila beaming.
“The hardest day of our marriage was January 5, 2011. And it was the day he went in for surgery. They had found a tumor the size of a fist in the center of his brain,” says Sheila.
Sheila says she saw no symptoms. Sometimes Bob would stumble, but Sheila says doctors told her the tumor had been slowly growing for about ten years. And didn’t show any symptoms until it grew large enough that it had impacted his speech. Sheila says the day her husband started slurring a little bit she took him to the E.R. with her three boys. They thought it was a minor stroke, but doctors told her Bob had to fly to Iowa City right then and there because there was a tumor.
“And he had to have a craniotomy to remove it and it was the only chance at saving his life but we didn't know what would be the outcome. So we had to say our goodbyes to each other before they wheeled him into surgery not knowing if we would ever see each other again,” says holding back tears.
“But here we are he survived it!” she says smiling.
The surgery alone lasted nine hours.
“They split his brain in half literally and then they had to go to the center of his brain to take the tumor out and then put the brain together and then put his skull back on,” says Sheila.
After being up for 24 hours straight, Sheila describes the moment as a “big sigh of relief” when doctors came out and told her they had removed the tumor.
“When they first took me back to see him, I didn't realize how different he would look or be. I just envisioned someone coming out of surgery and just being a little groggy and he could talk to me.
After surgery, Bob wasn't able to hold his wife's hand or sit up.
“At one point he opened his eyes slightly, when my sister talked to him, and that was a huge moment of shock for me, because that's when I thought, 'wow what is this.' I literally thought if he survives he's going to wake up and everything's going to be ok. And when the moment came and I realized 'no if he survives, there's still a different life there,' it was just very different, and I was scared,” says Sheila.
It was almost a month before Bob was able to sit-up.
He had to relearn to eat, talk and walk.
“Love is just acceptance really. Acceptance of the person, their situation, no judgement,” says Sheila.
“It's unconditional,” adds Bob.
Sheila says she knows how to be a wife, but had to learn how to be a caregiver.
At the same time she was adjusting to the life changes while also trying to maintain a full-time job to provide for herself, her husband and their three boys, she says with a quiet strength and perserverance.
When asked where she gets her strength, Sheila’s eyes begin to well up.
“I find my strength in God,” she says wiping away tears.
Sheila says that she also had tremendous support from her parents and even though both her and Bob’s parents have since passed she feels them with her.
“Sometimes you’re just wondering how you’re standing up,” she says referring to her time during Bob’s inpatient recovery. “And you just know something is holding you up,” she adds.
Sheila says it often felt like angels were around her during the most difficult days. And that she couldn’t have gotten through those tough days without the support of her family, friends, and the firefighting family Bob gained during his time as a LeClaire firefighter.
Sheila says insurance gave Bob three to four weeks of inpatient rehabilitative care.
And after being transitioned to out-patient care, Sheila says insurance covered three to four months of recovery.
But Bob says one his friends told him something once and he agrees with the statement, “brain injury never ends.”
Sheila says the time was helpful but not enough.
“The insurance gave us three to four months to do what we needed to do over a lifetime. I’m not a professional at this. I didn’t know anything about brain injuries before this happened. I didn't know how to take care of him. They taught me skills but at the end of the day they're the professionals and we need help,” she says speaking of all families dealing with a loved one who has a brain injury.
“The dynamic has changed because I'm his caregiver also besides his wife. It’s just a different life. Even his personality changed. (Bob feels) a bit more frustration” and Sheila says the family went from a double income household to a single income household.
Sheila says her husband was an active, outgoing firefighter, who wasn’t ready for his life to be put on pause because of a brain injury. She says the high socialization aspect of his life which in many ways defined him is now missing.
She says there are some things that haven’t changed, “his wit is still there,” she says laughing.
At home providers and adult day programs are both options, but can be costly, and are especially difficult for many single income households.
“Most insurances don't see it as a medical condition, and when it's not a medical insurance they don’t cover it. If he had medical needs it would be different,” says Sheila.
She says family members take time spending time with Bob while she’s at work. But she always longed for something that would help Bob continue to grow and succeed.
And eight years later, Sheila says the Quad Cities is finally getting a clubhouse that is giving her hope.
“Empower house will fill the void of getting these people the continued rehab that they need versus just sitting at home because if you don't use your brain it just will regress,” says Sheila.
Sheila says “Empower house is not a rehab but a place where individuals can continue their growth.
And for a social butterfly like Bob who couldn't walk down the street without running into someone he knew, Empower house is much more than just a place to visit while Sheila is at work.
“Everybody (at Empower House) wants to belong and wants to help each other,” says Bob. “Because you're with people that are in the same situation you are. Yeah, just a place to belong,” says Bob.
Right now Empower house is in a temporary small space.
But they are currently fundraising to move into a Clubhouse space.
Members meet every Thursday afternoon at Sacred Heart Cathedral in Davenport.
The Clubhouse space like the temporary space will offer a workplace where brain injury survivors can assign and complete tasks, stimulating their brain and helping in their continued growth.
The brain is more powerful than we realize
“here's a lot of confusion about brain injury and a lot of it is 'what can you do?' type of thing but you learn to adapt,” says Empower House member Quinton "Q" Graham. He survived a brain injury after both a motorcycle wreck and cancer.
Empower House Co-founder Missey Heinrichs says “the brain does not stop healing once therapy is done.” She and her twin sister Mickey Owens are therapists and have been specialized in brain injuries for over two decades. They say in the last few years, science has advanced to show that the brain can continue to develop and create pathways if it is stimulated.
And that’s one of the many reasons they created Empower House. It’s a clubhouse where members who have acquired a brain injury are assigned to complete tasks.
The acquired brain injuries “could be either by an accident, a stroke, brain tumor, aneurysm, stuff like that. As long as we keep stimulating and providing environments where people use their skills they do gain and get better,” says Heinrichs.
Owens and Heinrichs say there are about 18 brain injury clubhouses across the country.
“The tasks that I typically do for the clubhouse is I keep the meeting notes,” says Jennifer Soppe as she takes a break from typing on her computer.
Graham says he’s currently on his third task. He’s counted money from the last fundraising event and is sealing the goody bags for the next fundraiser.
All four of Empower houses co-founders are therapists. But Owens says Empower House “is not therapy. It’s a therapeutic environment but therapy is not provided here.”
Soppe says Empower House provides a sense of community.
“I'm so relieved that I'm able to connect with other brain injury survivors because it's one thing to connect via social media or online, but to be able to connect with someone who's face to face is huge,” says Soppes.
The clubhouse belongs to the members, and staff is present to assist if needed
“Right now we're working on barn-dancing actives, but on a weekly basis we're working on recording donations in an excel spreadsheet, another that record attendance,” says Heinrichs.
And this is only the beginning.
“I'm proud to be a part of the group that is just getting started,” says Graham.
“We are looking for our forever home, around 10,000 square feet and inside we will have that work order size kitchen, because on a daily basis they will plan and prepare a meal, and a business unit where they will take care of tasks and a business unit, and a maintenance unit,” says Heinrichs. Another long term goal might be to provide housing for members.
The typical clubhouse hours of operation will be based on traditional working hours.
It’s “a place where they can work on job-related skills and eventually may re-enter the job force,” says Heinrichs.
“A lot of brain injury survivors don't get outside of the home beyond their therapy so they don’t really have an interaction at large, so here we get a smaller community interaction that prepares us to go out in the community at large,” says Soppe.
In a room filled with witty banter, hard work, cooperation, and laughter, it’s clear Empower House is much more than clubhouse.
“We're one big happy family,” says Graham.
“You can be a part and you can do your part at the clubhouse. You can be yourself and nobody is here to judge you. A lot of times you feel self-conscious but you don’t have to here, you can be yourself,” says Graham. He says for brain injury survivors having an “outlet where you can be yourself,” is essential.
Graham than says “you have to love yourself before you can love anybody else, and if you can't be yourself then,” how can we love ourselves or anyone else?
Cofounders say they just want people to come together and help one another live their best life