When one is living with ABI (Acquired Brain Injury) success stories shared by others can be more trouble than they are worth.
Some recent discussions reinforced for me that publishing success stories is akin to walking a tightrope. Sharing one’s success in conquering certain limitations are definitely something to celebrate. Explaining how one experiences the incremental improvements can be helpful to others. However, to claim that one is ‘cured’ of an ABI is a tough claim to believe.
To claim to have been cured is to claim one has moved from being neurologically atypical to being neurologically typical. If that does in fact happen, I would definitely join in the celebration.
When a person makes generalizations about their success story, to apply to others, I begin to cringe. What works for one person and the process of achieving that success cannot be assumed as a template for anyone else carrying the ABI label.
Let me explain. I began to work with an OT (occupational therapist) a year after my ABI. My OT is a very experienced therapist focusing strictly on MVA (motor vehicle accident) brain injuries. The first thing she told me is that no two injuries are the same. In working with me there is no template to work from. With each client she is starting from scratch.
The OT sessions which were weekly at first and later monthly focused on two things:
- The OT as the detective, finding out what factors in my life needed to be modified,
- The OT as the teacher, training me to become my own detective.
I had to learn to identify what what type of activities were causing me setbacks, or more to the point, what factors in my activities were creating sensory overload (also called flooding).
As the months progressed I learned how to adjust my expectations, the intensity and duration of my activities, the choice of environments, and other factors in order to have a successful day.
Avoiding sensory overload became one of my measures of success. (The quality of my interaction with others, the purpose of my activities was another measure.) I did not relish needing up to four days to recover from an activity that brought on sensory overload.
One of a Kind
Every brain injury is unique because no two people experience injury to the same extent or in the same area or areas of their brain. The direction of the force, the person’s body position, the amount of muscle tension at the time of impact are just some of the contributing factors determining the severity and extent of the brain injury.
The brain is a very complex system of the body. While neuroplasticity, the brain’s ability to heal itself or to compensate, can show amazing results there are limitations to what healing can take place.
No two impacts to the brain are the same. Think of a batter hitting a ball. One mighty swing and the ball goes dead in the infield. Another mighty swing connects with the sweet spot and the ball sails out of the ballpark.
Other factors that affect healing is the level of motivation that a person has, not to mention the life goals a person has their heart set on. In some cases the part of the brain that is injured directly affects a person’s ability to be motivated.
Another factor that affects a person’s rate of recovery is what responsibility they are able to shed. In my situation I have no children at home, no work demands, a caring community and a supportive extended family. I have no restrictions on my personal schedule or regular obligations to meet.
I choose to share my set backs and successes so others might learn from my experience. Sometimes my experiences help a caregiver better understand the person they are supporting. Other times I hear from others and gain a better understanding of myself.
What I find least helpful is when people make assumptions about which challenges I am dealing with.
“Oh, bright lights must bother you.” (Actually no.)
“You must be dealing with headaches regularly.” (No, that’s very rare.)
The stereo-type impressions that people have are unhelpful and often annoying.
It’s not a matter of defining different environments and putting them into neat little packages – this one works – this one doesn’t work.
Living with ABI has it’s nuances. That’s why it takes detective work to learn to live with it. Let me share a few examples.
I have been in a room with a crowd of people noisily chatting over supper. Within five minutes I need to walk out because I’m going into sensory overload. Another time I will be in a room with a crowd of people and will be fine. The difference can be as subtle as the height of the ceiling in the two different rooms.
My ability to listen to live music is very much limited. In enclosed spaces my limit might be 5 minutes. In an outdoor venue I can manage for up to an hour and sometimes longer. On the other hand, I can happily listen to recorded music all day.
Listen and ask
What I appreciate most when someone has an inkling that I am living with ABI is their willingness to ask questions and listen. That signals to me that the person is willing to learn, wants to gain a better understanding, and has taken a personal interest in my well-being. That is the building blocks for developing a supportive bond.
Love to hear your success story. Great to hear about your personal insights. Tell it with the respect that each of us have our own life to live.