Groucho Marx got a lot of laughs for saying that he’d never want to be a member of a club that would accept him as a member. For people with brain injury, there isn’t anything funny about their new “membership” into the club of the “invisible injury.” However, many people surprise themselves with their strength, insight, and sense of humor — even in the face of adversity.
The best person to understand what living with a brain injury is like is somebody who has been there him or herself.
Meet these five bloggers who are on their own journeys after brain injury and want to share what they have learned along the way. So, if you are searching for encouragement, advice, or information from an authentic source, take a look at the following blogs and the amazing spirits behind them.
Kara Swanson started her brain injury blog when she realized how much she had learned through writing her book, I’ll Carry the Fork, about her 1996 brain injury.
“I have met thousands of people with brain injury during speeches and online, and I have enjoyed a wonderful new life after my brain injury,” Kara says. “I’ve come a long way from the experience I shared in my book and it has been almost entirely positive. I wanted to shout back to the people coming up behind me and let them know that “up the road the skies are clearing.”
Kara was in a car crash when a driver ran a red light. She still experiences headaches and cognitive fatigue, but has discovered many coping strategies despite her long-term symptoms from brain injury.
“My blog is the written expression of my hopeful attitude toward brain injury recovery and life in general,” Kara says. “While it covers topics that are painful, challenging, and frustrating, it has a bottom line and a consistent message that reflects my very firm belief that we are capable of absolutely rocking our lives after brain injury.”
Her blog targets long-term survivors in the brain injury community. “Because my blog is very positive and conveys a hopeful, grateful message, it usually does not resonate with people most recently injured,” Kara says. “There is a lot of anger and grief that needs to have its time and its voice. That’s important and I get that.”
“While it covers topics that are painful, challenging, and frustrating, it has a bottom line and a consistent message that reflects my very firm belief that we are capable of absolutely rocking our lives after brain injury,” says Kara Swanson.
“I try to target the people who are left, after a year or so, with stubborn symptoms and forever changed lives. The group that’s stuck between what can never be again and what is impossible to conceive,” she says.
While her advice is primarily for people with brain injury, much of it can be applied to the general public. “Brain injury or not, everyone is crippled by something. No one goes through life without change, challenge, and heartbreak,” Kara says. “Everyone will experience something that absolutely rocks his or her world sideways, and those of us with brain injury are fortunate that we have survived to recover from ours.”
Kimberly Carnevale started her blog “Hitting the Road with Brain Injury Riding Shotgun,” when she embarked on an RV trip from New Jersey to Tennessee with her daughter and her service dogs.
Originally, the blog started out as a way for her close friends and family to keep track of where she was and how she was doing as a safety precaution. That way, someone would know if she experienced a “cognitive slip” along the way, one of the lasting symptoms of her brain injury. But as she started to write, more and more people followed her along her journey.
“I had an audience I hadn’t anticipated,” Kimberly says.
Kimberly and her daughter, Sarah, turned their road trip into a campaign to raise awareness about brain injury. She started referring to her blog followers — who were mostly people with brain injury and their families — as her “butterflies,” associating their journey as one similar to emerging from a cocoon.
Their vehicle became known as the Butterfly Express. Kimberly wrote her blog address on the vehicle with window markers. At every truck stop and rest area, she and her daughter put up green paper butterflies, one to represent each of her “butterflies” and distributed pamphlets about brain injury.
“People don’t want to hear about brain injury until it’s happened to them or to someone they love,” Kimberly says.
Kimberly’s brain injury occurred in 1998 when a tractor-trailer rear-ended her car. In that moment, her dream of riding for the US Equestrian team was smashed. With the help of her faith and her first service dog, Dewey, she says she began a new episode of her life.
Kimberly launched an educational program called Canine and Abled to teach the public about service dogs. She now trains problem dogs, and hopes to start an Equine Ability Program to provide therapy using horses.
When Kimberly, Sarah, and the dogs arrived in Tennessee, she considered ending her blog. “I thought it was the end of the road, but people were very upset about it not continuing,” she says. “I felt so supported and loved by them.”
Kimberly’s blog covers many topics, and reflects the thoughts of someone with a brain injury. “It goes all over the place… like us, people with brain injury, we’re all over the place.”
With her strong faith, she says, “I don’t write, I just push the pen. God writes the words.”
Author Shireen Jeejeebhoy blogs about many different topics. While much of it is based on her books, Lifeliner and She, Shireen has started writing about brain injury, too. She brings her perspective as someone with a mild TBI.
“There is nothing out there for those of us with “mild” injuries who have internal body function problems,” Shireen says.
Written exclusively for BrainLine by Katherine Wise.