“If you are the caregiver or survivor you most likely understand what I am referring to. “
““I think everybody saw what happened in Game 2 against Toronto” DeBrusk said"…”
There are so many things we still do not understand about brain injuries. Recoveries are quite different depending on the injury and the recommended treatment plan. Scientists have noted similar injuries do not respond to the same treatments. Furthermore, recurring symptoms have a large impact on the functioning of a survivor.
When we were in the pediatric intensive care unit doctors explained this phenomena but it was so difficult to grasp. If you had a broken leg a doctor would treat the break and give recommendations so why wasn’t this happening now? I recall standing in the hospital room and asking every doctor, resident, nurse, and therapist if Olivia would wake up and what the recovery plan would entail. They kept repeating the standard response, “We don’t know if and when she will wake up. If she does, we will evaluate at that time.”
We have continued on this unknown path for over 17 years and are still full of questions.:
When will ‘this’ stop?
When will ‘this’ start?
How do we correct?
Can she …….?
Why hasn’t ‘this’ gotten any better?
I have been reading articles about frontal lobe injuries. Olivia has a frontal lobe injury in both hemispheres as well as a bleed on her occipital lobe and shearing. Studies relative to frontal lobe injuries have recently been published and have begun to address our questions.. Frontal lobe injuries are more difficult to diagnose and less obvious to the outside world. Many brain injuries are invisible but those affecting the frontal lobe are harder to diagnose and therefore, treat. The symptoms can be masked temporarily giving the survivor and others a false impression. Medical testing does not always uncover how the patient is recovering or what areas can be treated. Caregivers get frustrated because the behaviors they witness may not be diagnosed appropriately.
Olivia’s injury did not leave any physical scars. She is the classic definition of a person with an invisible injury. Outsiders witness her in the community and assume she is fully recovered. Many have approached us over the years and commented they are glad she recovered, fine, or things worked out so well for us. We usually smile, nod, and continue on.
Many adult survivors desire to return to work once the recovery phase is over. They are devastated when they realize working in their prior profession is not possible. Another loss to grieve and they are left to wonder what they will do with the rest of their lives. How will they provide for a family, socialize, gain confidence, or independence.
Our introduction into brain injury transpired 17 years ago and, in some ways, the researched has advanced but I am still surprised it hasn’t advanced further. There is so much we don’t understand about the brain, our most important organ. The following article https://www.technologynetworks.com/neuroscience/articles/frontal-lobe-paradox-where-people-have-brain-damage-but-dont-know-it-315494 explains this paradox and gives a few recommendations but we need more research on this area. The goal is to get survivors back to their full functioning selves.
Suicide Risk Higher For Traumatic Brain Injury Survivors
A disturbing, yet not surprising, article was published in the Washington Post today. Although short the reporter detailed a Danish study conducted on young adults who either had a Traumatic Brain Injury or a mild injury sometimes classified as a concussion. Unfortunately, the outcome was not a surprise at all.
For a few years, I have worried about this type of event happening in our family. There has been a large increase in suicides especially among teenagers and young adults. We have tried to be as proactive as possible. Ignorance is not bliss. I think our society has to do more. Traumatic Brain Injury patients and others suffering from mental health issues need support and care. The health insurance companies need to grant this care to those in need.
We need to share our stories. Not just the good ones. The heartbreaking narratives have to be told and heard. I believe we all have a story to share. Sometimes the most heartbreaking ones have the most impact.