Who am I now? Searching for Pieces of My Former Self After a Traumatic Brain Injury
By, Meg Scaling/OTRL
Life Skills Community Rehabilitation & Associates, LLC
You are not alone. I hear the same stories of sadness over and over again as I work with individuals who have suffered a traumatic brain injury. Stories of individuals who worked 50 hours or more a week, managing large corporations, scientists who were working on specialized patents, attorneys who were partners in major firms, teachers, nurses, mothers, fathers, and students… all setting goals and working hard contributing to the world in their own unique ways.
I hear stories of those same individuals who once hosted large corporate events, and lavish dinner parties for friends and families. They once took great joy in watching their families pack into their much too tiny houses to gather round for special holidays. They smiled as laughter and conversation filled the air, the aroma of the perfect combination of foods were somehow thrown together with what felt like little effort, and the children danced through the house trying to avoid tripping over the room full of individuals sitting and enjoying the company of others.
I hear the stories of how one day it all changed. BAM! The impact of the car was so sudden, it all felt so foggy. Some were completely comatose unaware that their life was barely spared as their injuries were so severe and others were able to walk away with what seemed like just whiplash, a headache, or a bit of confusion or fatigue. Some had multiple crush injuries and were barely recognizable to their family visiting the ICU, and others were able to even give a report to the police officer, and felt at the time that they got away without physical damage to their body. For some the residual effects of the accident were apparent immediately, and for others, their symptoms and job performance seemed to worsen over time.
For most, residual pain, headaches, and muscle spasms prevented them from enjoying even the most relaxing event. Sleep was intermittent at best with many individuals reporting that they would often only spend 2-3 hours a night sleeping. During the day, they would experience fatigue from even the simplest of tasks, for instance, having to plan a meal, pick out the right clothes for the weather outside, or for simply sorting the mail into piles. For some, their memory was wiped out completely and they weren’t sure who their old self was, and for others it was an evolving personality change that included irritability, anxiety, depression, and a desire to shut out the outside world. Family functions no longer felt like joyful events, but rather painful bouts of sensory overload. Too loud. Too painful. Too crowded. Too many people talking at the same time. Too much food. Too many decisions. Too much work…
Lives changed in an instant. Personalities changed. Families changed. Mothers and Fathers no longer able to be the caring, nurturing parents to their children. Their special talents and gifts wiped away and replaced with outbursts, anger, depression, irritability, anxiety, confusion, pain, and the knowledge that their old life is gone, and their new life really doesn’t feel much worth living.
This is a story I hear time and time again. I hear multiple suicide plans. Plans that involve wanting to end their life so that they are not a burden to their loved ones. Wanting to end their life because they are in too much pain, or because some fool told them that the functional gains they will make will most likely occur within the first few months or years, and after that they need to just accept their new self and move on. I’m here to tell you that JOY can be returned to you. LIFE can be WORTH LIVING again, and gains can be made 20+ years after the injury. Your brain is an amazing organ that wants to heal itself. It wants to return the injured you to the old you. It just needs to be challenged and supported so that it can begin the process.
If you have a brain injury and are reading this, or are having a family member read this to you, then the most important thing I can tell you to do from a therapists perspective is to STOP avoiding what is hard. Begin by making a list of all the things that are difficult and all of the places that you avoid going to. Begin by finding a good occupational therapist that will be able to reach out to you where you live and who can begin to work on these goals one at a time. I have had multiple clients tell me when they first met me that I was wasting their time, because there was no way after 5, 9, 11 years of living with their brain injury that they would ever be able to walk without their brace or cane, learn new skills, or shop or drive independently. They had all been told this is as good as it gets.
What they didn’t realize that it is only as good as it gets if the brain is not motivated or stimulated to do better. The brain is a highly efficient organ. It will become lazy if not challenged. It wants to burn as few calories as necessary in order to conserve energy, but if put to the challenge; it wants to make those challenges easier so in the long run it once again uses less energy. For example, if a person has never played tennis, had a brain injury, and then decided they wanted to play tennis, the brain would have a very difficult time coordinating the vision center of the brain, with the balance center of the brain, as well as the motor planning part of the brain in order to do all the things the body needs to do to be able to time it perfectly to hit the ball with the racquet, let alone get it over the net and in bounds. It will take the brain a lot of work and energy to do this task, and the brain (and body) will be very tired after trying this task. If that same person however, decided that they were going to practice this skill every day, the brain would work on reinforcing those neurological connections and create a stronger pathway of communication between the various portions of the brain required to play tennis. Over time the brain gets good at it so that it doesn’t require as much work, and over time, clients that once could not jump over a line or swing a racquet, are playing in adult tennis leagues and even coming in first place (true story!) Don’t ever believe that you are as good as you are going to get, because you are only as good as you are going to try.
I am aware that here in the state of Michigan we have an amazing rehabilitation system for individuals who are involved in motor vehicle accidents, and that nationwide and worldwide; therapists are not able to follow individuals into the community as their insurance coverage limited and/or are generally expired once they are discharged from an outpatient clinic. I also recognize that I have had an amazing opportunity to follow my clients over a period of 11+ years and some are now 20+ years post injury and are still making significant gains every day. I have the luxury of gathering the data and following clients from their home, to their work, and into their new vocational adventures. We have set up this website and will continue to expand it so that resources, information, and inspiration can be shared across the web and across the world.
If you or your family member or friend has suffered from an acquired brain injury (be it traumatic or mild), please know that you can find joy again. It will take time, tremendous effort, and support, but you can do what you set your mind and body to do. Please feel free to contact our office for additional support and utilize our discussion board and blog to meet up with other individuals who have suffered a brain injury like you. I found that when I treated even the most depressed and suicidal individuals, once they got a small taste of success, they wanted more. Once they realized that they did something today, that they couldn’t do yesterday, they felt that they were once again regaining bits and pieces of their old self. Once they tasted true Joy again while celebrating even the smallest of successes… it became something that they set their new life mission to achieving. Finding Joy in life… regaining pieces of your old self… it is possible, and don’t let anyone tell you differently.
Meg A. Scaling/ OTRL