WINNING DURING DIFFICULT TIMES
The Kids We Saved Following Brain Injuries
Tough detours in life sometimes benefit others
Nobody knows how their online behavior may impact others.
In the mid-2000s my daughter sustained several mild brain injuries. ‘Mild’ is a subjective word. After the first, patients have increased susceptibility to more as their vision, balance, or judgment may be impaired. Sustaining several head injuries has a compound effect, like interest rates.
Every brain injury, like every person, is different. Some get up, dust themselves off, and have no lasting problems. Others may experience a relatively minor injury, localized stroke, or encephalitis and become permanently disabled.
This story focuses on the wins.
Brain injury pokes its ugly head into our lives
Alex’s first accident turned out to be the last day I worked in the office for a long time. With a strong background in systems analysis, some knowledge of neurology and the medical field, and computer skills, I dove into research and advocacy.
It didn’t take long before I became an admin for an online TBI Survivor’s Group and established a Caregiver’s Support Group.
Many of the stories of injuries, disease, and congenital defects were stories of struggle, depression, and frustration. Getting the proper tests, diagnoses, and treatment plans is difficult at best. But families and individuals adapt to a “new normal” following the initial shock, and there are daily wins as well as losses.
In our case, one of the things I initially missed the most was sharing a joke with Alex. Her cognitive, memory, and multi-tasking skills were impacted by pain as well as the head injuries. Her smiles were faked, if present at all for months. Finally, she had a friend over one day to watch a movie. As I walked by I noticed a gleam in Alex’s eye.
Alex’s friend was notoriously gullible.
“Mom, tell Jo how I get a radio station from my implant.” Her encouragement was all I needed to channel Robin Williams. Poor Jo.
The online caregivers and survivors cheered when I recounted the story.
Teacher Bruce, patient Billy, and mom Beth
Bruce came into the scheduled caregiver’s chat session looking for answers. He was a high school teacher in Allentown, Pennsylvania. One of his favorite students, 14-year-old Billy, was involved in a bad car accident and was in a coma.
“Welcome to the club no one wants to be a part of,” my friend and co-moderator Sharon typed.
Six of us asked questions about Billy’s diagnosis. What part of the brain? Diffuse axonal, closed-head, or open-head localized damage? Responding to stimuli? What tests have been performed? How old is he? What was his health like before the accident?
“Does he have decent health insurance?” Sadly, this matters.
I’ll skip the graphic details.
We were pros with a vast wealth of information. What we didn’t know, we could access via a vast network of resources.
The chats could be intense. I held my breath through each long pause as new information was imparted. Our goal was to be supportive and helpful, but lying was out of the question. There are some clear indicators when a patient is declining, and parents and loved ones need to understand if there are alternative therapies, consultations, or options to consider.
Not knowing what’s going to happen next is often the hardest.
The chats
Billy was stable and Bruce was a superhero in the making. He found us within a few days of the accident and came to each chat prepared with a list of questions. What kind of stimulation is okay? Touch him? Talk to him? Play music? What kind? Allow friends to come? When, and how many? What about lights, temperature, and familiar things from home?
At the top of everyone’s list are often the unanswerable questions: “What should we expect? Will he be okay?”
Four times a week, for about two hours each time, we answered Bruce’s questions. One woman’s husband had sustained similar damage in the same region, and we recruited two smart survivors who’d also been through similar experiences. Before long, several of us were exchanging emails with Bruce and pointing him toward the latest research and resources.
We coached him on the latest therapies and warned him not to over-stimulate the boy.
Bruce takes charge of educating kids
Bruce was truly wonderful and very dedicated. He was equally concerned with how to support Billy’s friends and family. Together with a caregiver teacher, he worked with local resources to establish a program to educate youngsters about risky behavior and gave them appropriate information on head trauma.
Sharon organized working with Bruce and other caregivers and survivors with experience in creating educational materials. Together with other teachers and administrators in their school district, they established a curriculum to help avoid the spread of misinformation.
One of the girls involved in the accident with Billy hadn’t survived. The accident was witnessed by several students near school, during the day. Counseling, fund-raising, and supportive communication links were established for the large number of kids who were impacted or staying abreast of Billy’s case.
The local newspaper covered some of the events and honored Bruce’s involvement along with others who helped.
Tough family choices
Billy’s family was ever-present at the hospital, taking shifts.
Sometimes, there comes a point when the doctors say it may be time to turn off life-sustaining machines. Medicine has come a long way since the mid-2000s as more soldiers have sustained TBIs, and I suspect monitoring equipment has advanced as well. Kids’ outcomes are especially hard to predict. Since the brain isn’t fully developed until an individual is in their twenties, their brains are both more pliable, but also more fragile.
The caregivers and survivors involved were so focused on Bruce and our own roles as (often exhausted) caregivers, that it didn’t occur to us he was printing out the chat sessions. He shared them with Billy’s parents. They shared them with some of the therapists and medical students.
Beth, Billy’s mom, came into the chat session one night and asked if we thought it was time to let Billy go. My heart cracked as a few of the caregivers chimed in with sentiments that ranged from, “Do what you feel is right in your heart,” to “ABSOLUTELY NOT!!!”
A few days passed without a word from Bruce or Beth.
Losing people was always a recognized outcome. Some prayed, some cried, and some were stoic and pragmatic.
I wondered how long I could survive in all this pain.
The happy ending
Thursday night I let out a sigh of relief when I saw Bruce join the chat. He posted heart emojis.
“There’s someone here to talk to you,” he wrote. “I’m going to type for Billy.”
I’m convinced you can feel some intense emotions coming over the internet. About a dozen people lost their collective minds.
“Thank you.” is what Bruce wrote for Billy.
A bunch of cheering, bawling strangers celebrated.
Billy’s mom came on and said she was rushed but wanted to thank us, followed by several other family members.
The waiting game may be over once a patient wakes up, but everything else speeds up as more tests, therapies, and needs are identified.
Bruce gave us sporadic updates on Billy’s recovery over the next couple of weeks. Kids are resilient, and Billy had a lot of support from places he couldn’t even imagine.
Information spreads to Bob’s family
About two weeks later Beth joined us.
“You guys won’t believe this!” she wrote. “A few days ago, I was waiting outside Billy’s room while they got him ready to transfer out of Intensive Care. Bruce was here and we were going over his chat logs. How would you guys feel about Bruce publishing some of them?”
We all agreed it would be okay if identifying details about ourselves and our families were changed. I’m not sure if anything ever came of that.
Beth continued.
“There’s more. A scared couple sat down nearby. I could tell they were in the same hell we’d been in. Their son was in a motorcycle accident and the doctors told them he might not make it. They started to talk about organ donations and discontinuing life support. Bruce and I talked them into waiting. Their son is awake! We don’t know what’s in store for Bob, but at least there’s hope.”
We heard through Bruce that the young man was making progress, but I’m not clear on his recovery.
Billy had several months of therapy and was able to return to school. In fact, Bruce wrote me three years later to say he had the honor of giving Billy his diploma.