Ann Boriskie sustained several injuries in an automobile accident in 1998, but the most difficult to deal with was the one that went undiagnosed — a brain injury.
“I thought I was crazy,” she says. “I had no one to tell me why I was getting lost, why I couldn’t think of words, why I couldn’t write numbers or cursively. I was lost. I was depressed, anxious and paranoid, and there was no one to hold my hand and explain that I had a brain injury and what I was feeling was normal, and it would get better. That’s why I developed this program.”
The program is the Brain Injury Peer Visitor Association, an organization of volunteers who offer hope, support, education and information to brain injury survivors. In the past three years, peer visitors have made 2,764 hospital visits and spent 2,073 hours counseling brain injury patients at Shepherd Center and Shepherd Pathways. (They also visit patients at more than 20 other healthcare facilities in Georgia.)
Sarah Small, Psy.D., Shepherd’s director of inpatient neuropsychology, originally wasn’t comfortable with the idea of brain injury peers visiting with Shepherd patients.
“I was concerned about what patients and their families would say because even if the visitors have similar brain injuries or stories, the outcomes might not be the same,” she says. “That depends on things like their age, history and family support. I was concerned that people I didn’t know might be giving our patients too much hope or too many negatives.”
She requested that the peer visitors go through Shepherd’s volunteer training program so they would understand Shepherd’s culture.
“I thought I might have to exercise a lot of control over them,” Dr. Small says, “but they’ve proved me wrong. They’re just amazing. When they come on the floor, the peers are very structured about it, and they respond to me when they see something that needs to be addressed. It’s a very collaborative relationship. And that’s huge because families are so fragile.”
Bruce Allen, 58, a peer visitor from Marietta, Ga., says, “Our goal is to encourage and help family members to see that there is life after brain injury, and that the ‘new normal’ can be good.” Ann says that when someone is injured, family members often want to help, but don’t know what to do. Peers offer assurance from their own experience and bring with them information packets that include book lists, websites and other resources.
It also includes a letter written, Ann explains, “as if your brain is talking to you about all the things you’re going through. The more a person knows about their injury, and they know certain things are normal, it makes them feel better. They’ll think, for example, ‘Oh, that’s why I’m sleeping all the time. My brain’s trying to get better.’”
When she was injured in 1998, information about brain injuries was in “the dark ages,” she says, and even when she began gathering information in 2003, there were only a few books about it.
“It was like brain injury was a dirty word,” she says, “as if people had their tongues hanging out and were drooling. Now, she says she’s glad information is abundant.
For more information, be sure to watch a video produced by Shepherd Center in partnership with the Brain Injury Association of America. It’s called “Understanding Brain Injury” and is available online at braininjury101.org.
Although founded by Ann, the peer support program was initially run by a social worker with a grant to work with patients with traumatic brain injuries. But when the grant ended, Ann took over the program and expanded it to include all types of brain injuries.
After training with Ann and as a Shepherd volunteer, peers spend two days accompanying experienced peers on “shadow visits.” Peer visits occur twice during the week and again on Saturdays, and conversations may range from finances and driving to personal care and relationships. Peers also meet one-on-one with patients, and those relationships often continue after patients leave Shepherd.
“When we visit them in the hospital, we don’t just leave it at that,” Ann says. “We give them our business card with our number on it, and we tell them to call us night or day.”
RoseAnn Olson, 50, a peer visitor from Alpharetta, Ga, says: “The peer visitor program has allowed me to meet some amazing patients and their families. I still keep in touch with many of them after they complete their rehabilitation and return home.”
The response has been exceptional, Dr. Small says. Patients and their families are especially grateful to hear from someone who has had a similar experience.
“A lot of patients who have severe disabilities or have been in a coma meet with the peers and want to talk about what that means,” Dr. Small says. “When we check in with families and get their reactions to peer visits, they say, ‘Wow, that was informative and helpful.’”
“Occasionally, a survivor or caregiver will comment that they appreciate the opportunity to talk to someone who has been through the experience of a brain injury,” says Kris Lorenz, 64, a peer visitor from Tucker, Ga. “That makes everything I do worthwhile.”
Like everyone else, Ann is unpaid and has donated a substantial amount of her own money to pay for the information packets. She has also donated 9,811 hours of her time since 2006. She still experiences pain from her own accident, but rather than letting it limit her, she had buttons made that say “I Can.”
“You should see the smile when we give them to people,” she says. “You don’t have to explain; they get it. The point is, don’t ever let anybody tell you, you can’t do things.”
Although she was not treated at Shepherd when she was injured, Ann says Shepherd patients are “the most loyal I’ve ever met. That’s because Shepherd is such a phenomenal place. The staff at Shepherd has the same attitude we have. We believe you can get better and have an even better life. We’re about hope, and giving back is our mission. We’ve been allowed to live and give back to other people. It’s a way of repaying the Shepherd staff for saving our lives, not just physically, but emotionally and for who we are today.”
Bruce Allen, 58, of Marietta, Ga., lost his eyesight, speech, executive functions and use of his right side after brain surgery in 2008. Having regained most of his functions and 60 percent of his right side, he shares his experiences in a book he wrote with his wife. The book is Brain Storm: A Journey of Faith Through Brain Injury.
Here is his story in his own words:
On Jan. 7, 2008, I had emergency brain surgery for two abscesses that had rapidly formed in my brain. I lost my eyesight, speech, executive functions and use of my right side.
Now, five years later, I have regained most of these functions and about 60 percent use of my right side. After two years of rehabilitation at Shepherd Center and Shepherd Pathways, I found myself on disability, but wanting to help these family members and care givers.
My wife, Laura, and I are now very active with the Brain Injury Peer Visitor Association. We lead family support groups at Shepherd Center on two Saturdays each month, as well as at Shepherd Pathways during the week. Our goal is to encourage and help these family members to see there is life after brain injury and that the “new normal” can be good.
I am active in my church choir, small group Bible study, MUST Ministries (food distribution to those in need) and Unlimited Possibilities, an area-wide group of 55 or more brain injury survivors and caregivers who have breakfast together once a week and meet monthly. Investing yourself in others who are struggling where you have struggled is very fulfilling. I’m too busy now to work at a job!
Peer visiting led us to recently write a book, Brain Storm: A Journey of Faith Through Brain Injury, which tells our story from the viewpoint of both the survivor and the caregiver. Nine stories of other brain injury survivors are also told to encourage readers. Resources such as books, websites, movies, etc., are listed to help those on the journey to find much-needed and sought-after help. For more information, see www.BrainStormAllen.com.
Kris Lorenz, 64, from Tucker, Ga., sustained a traumatic brain injury in an auto accident in July 2004. Unable to resume her career as an architect, Kris says volunteering with the Brain Injury Peer Visitor Association and helping others has filled a void in her life.
Here is her story in her own words:
In July 2004, while traveling for my employer, I was in a traffic accident that left me with a traumatic brain injury. I am an architect by profession and lived for my work. As a consequence of the accident, I lost my job and my work, leaving me with a feeling of emptiness and even uselessness.
I then decided to volunteer my time to anything that might be constructive, for me and hopefully for others. First, the ACLU and then Shepherd Center offered me the opportunity to contribute some time and effort. Shepherd told me about the Brain Injury Peer Visitor Association, which also presented a full opportunity to put my experience with a brain injury to a positive use.
The volunteer work helps to fill the void left by the loss of my work and gives me the opportunity to make a positive contribution to other people who have experienced a similar life challenge. Occasionally, during a peer visit, a survivor or caregiver will comment that they appreciate the opportunity to talk to someone who has been through the experience of a brain injury. That makes everything I do worthwhile and meaningful.
RoseAnn Olson, 50, of Alpharetta, Ga., sustained a brain injury after nearly drowning while snorkeling in April 2006. After her recovery, she and her daughter Courtney joined the Brain Injury Peer Visitors Association in gratitude, RoseAnn says, for “getting my life back.”
Here is her story in her own words:
On April 7, 2006, I drowned during a spring break vacation in Grand Cayman. I was snorkeling with my family. To this day, I am not sure why I went under water and cannot remember anything about the accident at all.
Luckily, my son, Zach, who was 19 at the time of the accident, pulled me from the water and two strangers who knew CPR worked tirelessly to resuscitate me. I had no pulse, and my lungs were filled with seawater. I stopped breathing several times in the ambulance, but an ER doctor from Texas rode in the ambulance from the beach to the hospital with me and used life support equipment to keep me alive.
Although there was a hospital on Grand Cayman, it was not equipped to handle my injury effectively, and after a brief stay, the doctors said, “Due to the lack of oxygen to her brain (anoxia), she will likely be a vegetable for the rest of her life”.
My husband, Loyd, arranged to have me transported by an air ambulance to Northside Hospital in Atlanta, where I spent 10 days in intensive care.
On April 19, I was admitted to Shepherd Center. When I arrived, I had a tracheotomy, catheter and I couldn’t walk, feed myself, read or write. It was at Shepherd where I received the necessary speech, physical, recreational and occupational therapy required to help me begin my road back to a normal life.
I walked out of Shepherd unassisted on May 8, 2006 able to talk and feed myself.
After completing Shepherd Center’s inpatient program, I entered Shepherd Pathways outpatient program, where I spent another month working hard to further refine the progress I made at Shepherd.
In August 2006, I passed my driving recertification test, and at that point I realized everything was going to be OK. Today, I continue to improve. I use several tools to work on memory, balance and writing.
The Shepherd Center doctors and therapists, who were dedicated and committed to helping me get my life back, will forever hold a special place in my heart. I will always be grateful to Shepherd Center.
After my recovery, I truly wanted to do something to show my gratitude toward Shepherd. After researching ways to give back, I found Ann Boriskie, director of the Brain Injury Peer Visitor Association. Ann developed an amazing program for brain injury survivors and their families/caregivers. She trains volunteers like me who have been affected by a brain injury to meet with patients/caregivers. Our goal is to offer hope by sharing our stories with the patients and families we meet.
I visit Shepherd’s ABI and Neurospecialty units and The Scottish Rite Children’s Brain Injury Unit once a month. My daughter, Courtney, also wanted to show her gratitude to Shepherd Center, so she went through the Brain Injury Peer Visitor Association training and joins me on my visits when her busy college schedule allows.
The Peer Visitor program has allowed me to meet some amazing patients and their families – many of whom I still keep in touch with after they complete their rehabilitation and return home.
Thanks to Shepherd Center and their optimistic approach to my rehabilitation, along with the support of my family and friends, I was able to get my life back. I volunteer, garden, cook, travel, snorkel, and love being a wife and a mom.
Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, spine and chronic pain, and other neuromuscular conditions. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. In its more than four decades, Shepherd Center has grown from a six-bed rehabilitation unit to a world-renowned, 152-bed hospital that treats more than 740 inpatients, nearly 280 day program patients and more than 7,100 outpatients each year in more than 46,000 visits.