A Brain Injury Is Like The Color Blue

Maybe I'm special. Not many people can say what I easily can. My life is split into two experiences of personality. I was one person up to the age of 44. Then a different person took over to inhabit my consciousness or what we refer to as 'self." Let me explain.

Blue has always been my favorite color. Everybody knows the color blue, right? Maybe not.

If someone were visually impaired or blind since birth, they may have no clue what color is at all, never mind the actual color of blue. And, for all we know, what one person sees as blue could be another person's red. When we learned our colors from our parents and teachers, they pointed to a color and said "this is blue." Whatever color you saw at the area they pointed to is now known to you as "blue." Maybe, what I see as red you call blue. Perhaps our brains don't interpret these color impulses the same and you have a totally different color-scape than I do with colors I couldn't even begin to recognize.

What if we just try to describe it. The color blue. To describe a color without using color as a point of reference is impossible. "It's blue, like the sky!" Well, if you can't see the sky, that description would not be at all helpful.

Trying to explain something to someone requires a common point of reference to base your explanation on. Without that, we cannot communicate a thought, idea or situation. Can a color be described to someone who cannot see, an aroma to someone who cannot smell or a sound to someone who cannot hear?

Which brings me to my point. Since diagnosed with a brain tumor in 1999, I have found there is no way to explain my deficits or the effects of the changes in my consciousness to someone who has not experienced changes in their brain. Having a "new brain" is far from anything most people experience. The only people who truly understand are the ones who live with it themselves. The "insiders". And, even for us, the experiences are commonly quite unique due to the complexity of the brain itself.

As hard as our friends, family and significant others try, they will never truly be able to understand. To them, it is something that happens at certain events or places or while trying to do something in particular. To us, it never goes away. We take it with us wherever we go. We don't forget it because it is part of us. It is who we now are. It is a reality that we become 'accustomed' to or learn to accept.

This is not a pity party. In fact, I have learned many positive lessons from this experience. For me, it is a brain injury; for someone else, it is being an amputee, someone else, losing a child -- everyone has, as they say, a torch to bear. As much as we want to empathize and understand what others are going through, we have to accept the limitations of our abilities to do so.

I believe accepting the fact that people can not completely understand is critical for true acceptance of our situation, whatever that may be. For me, it is time to stop trying to explain. Time to let go of the frustration that arises by the repeated unsuccessful attempts to explain why I behave the way I do, why I need certain modifications to my environment and why I react the way I do.

This realization is very new to me. I am sharing it for others in the same or similar situation because I truly believe this is a key element to full healing... not worrying so much about others understanding. Somehow, this realization is quite liberating for me.

I write this because I know I am not alone. After 19 years of this being my reality, and after 19 years of trying to get those around me to understand, I am stopping. How can I expect someone to truly understand without any point of personal reference to base their understanding on?

It is like trying to describe the color blue to someone. It just can't be done.

I have liberated myself. I hope I have helped to liberate at least one other in the process.

Patricia Rose, R.N. is a retired nurse epidemiologist who specialized in pediatric AIDS research. She is a breast cancer and brain tumor survivor. After truly realizing her own mortality, she has learned much about herself, others, the miracle of life itself and the importance of cherishing each moment. She is Buddhist and is an avid mindfulness proponent. She has spoken as an inspirational speaker at brain tumor conferences and at Harvard Medical School.