An injury that is not visible to the naked eye effects approximately two percent of the U.S. population, and, in my opinion, is fairly often neglected when referring to the disabled community. I suffered this during my first hospitalization and no one had any clue it occurred until I regained consciousness.
A Traumatic Brain Injury (TBI) is not observed due to its clear internal damage, but they are detected through their effects. A TBI transpires when an external force or internal event damages a specific portion of the brain, and the effects of TBIs are wide-ranging and every single person’s injury manifests in unique ways. External forces take place through blunt force trauma, such as falls, collisions, vehicle accidents, assaults, etc. Internal events include chemical damage, infections, tumors, strokes, and if there is a loss of oxygen to the brain.
During the chaotic and stressful hospitalization at Barnes Jewish Hospital, my brain lost oxygen for an unknown period of time. The moment – or time period – there was a loss of oxygen has never been fully understood, but it could have been anywhere between five surgeries on bypass, being on an extracorporeal membrane oxygenation (ECMO) multiple times, having the same breathing tube for two months, having a 108 degree fever, and being revived over seventy-five times. The doctors could not come to a consensus of its occurrence, but they all are unified in my diagnosis: a cerebellar brain injury.
The month following my initial moments of consciousness were a mystery to every health care professional. My wife would later state that she had no idea what was wrong with me, and the doctors commented that there were no clear signs of what was happening. Since traumatic brain injuries commonly do not get diagnosed until after consciousness, the staff would need time to properly diagnose the injury. That month revealed my symptoms, which would later assist doctors diagnose me with a hypoxic brain injury.
A partial loss oxygen to the cerebellum creates a hypoxic brain injury. The cerebellum is located right above the brain stem, and it controls speech, balance, fine and gross motor skills. This particular section of the brain is necessary for reactionary tasks, so it can go unnoticed and underappreciated.
The common symptoms of a hypoxic brain injury are tremors, staggered walking, decreased muscle strength, slurred speech, and loss/worsened balance. Immediately I knew all of those side effects applied but the doctors needed time to verify. It turns out that the coma forced muscle atrophy, which worsened some of the side effects of the brain injury.
Lifting a hand sent the entire arm into severe tremors, handwriting became futile, and feeding myself turned out to be dangerous. There have been posts about my inability to speak, but there was no mention of how communication occurred. With tremors persisting, there was a number system developed to communicate common needs (pain, bathroom, suction the tracheotomy, and ice). As far as standing and overall movement, it was obvious that my leg muscles were to weak to stand on my own. When I was assisted by two physical therapists to stand up, it was clear that any shred of balance was lost.
The time spent in the hospital focused on showing any improvements in those areas but progress was slow and steady. The two months at The Rehabilitation Institute of St. Louis (TRISL) helped improve every side effect of the brain injury. As we transitioned home, out-patient rehab continued the progress from TRISL, and there was short rehab was facilitated through Mizzou’s Department of Physical Therapy. And finally, after my heart triansplant was successfully completed, there was period of time spent at the Shirley Ryan AbilityLab. So, it’s hopefully clear that TBIs require plenty of time of treatment.
As important as quality rehab is in recovery, I believe that was goes unnoticed is the emotional toll a brain injury creates.
Coping with the multitude of physical side effects has been difficult, but handling the emotional side effects has proven to be equally challenging. The emotional side effects were not immediate but over time they grew. The emotional side effects came through two specific avenues.
1. I felt worthless.
I have struggled for the past two years with comparing the man I was before all of this and the man that I am today. I sometimes become angry that I can’t do the things that I loved anymore. I usually list off what I feel like was taken away from me: teaching, preaching, working, singing, writing, sports, etc.
Whenever this list forms in me head, which can happen instantly by simple visual or audible cues, I immediately feel worthless and useless. Or at the best moments I feel simply less useful.
2. I withdrew from people.
It became easier to stay away or create distance from people. Repeating my story turned into a task and – to be honest – it became annoying. Yes, rehab is important for treating the brain injury, but having an emotional support system has become vital in my future growth. Discussing my story has become routine, but my story of sickness and TBI do not define the entirety of life today.
But, withdrawal became easy at times because some people had a time being involved in life after the TBI. Feelings of resentment developed into apathy. Withdrawal developed easily because of the withdrawal I perceived from others.
Sharing those two emotional side effects of life after a TBI are not directed at any specific person. Sharing that is merely meant to describe how others might not see how individuals with TBIs might silently suffering around you. The physical side effects are easy to spot, but it must take love for the person to seek out the emotional side effects. Everybody, including me, has a duty to love those with TBIs with both physical and emotional suffering.
For anyone reading this who might be struggling with your worth because of a TBI or not, I hope you take this to heart:
“But he said to me,“My grace is sufficient for you, for my power is perfected in weakness.” Therefore, I will most gladly boast all the more about my weaknesses, so that Christ’s power may reside in me. So I take pleasure in weaknesses, insults, hardships, persecutions, and in difficulties, for the sake of Christ. For when I am weak, then I am strong.”
2 Corinthians 12:9-10
Jacob Luis Gonzales