My relationship with traumatic brain injury

I’m ready to talk about my relationship with TBI. Relationship may sound like an unusual word to use, but TBI, for me, has some of the features of a relationship. There is struggle, familiarity, times to defend its presence and times to wish it far away. I want to be clear, though. TBI does not describe all of me. It is not my essence or my soul. It does not reflect my deepest thoughts or desires. It does not describe or define me. Similarly, my spouse isn’t me. We are connected, but not synonymous.

Rough spots

Like any relationship, mine with TBI has had rough places and hard times. I spent the first several years in a blame/anger state. Why am I feeling as I do? Why doesn’t it leave me? What did I do to bring it on? What mistakes did I make? During these years, I also expended a great deal of energy strategizing how to disguise the presence of TBI in my life from others, and likely myself.

Oh, I’m fine. Thanks for asking. Yes. Much better now.

Of course, I can do that. NO, I’m not too tired.

Could you just remind me again of those directions?

I’m just going to rest for a little bit.

What a goof. I slipped again. I must be more careful.

I had trouble sleeping last night. That’s why I seem so tired.

The guise went on and on.

I spent an inordinate amount of time reviewing and replaying the incident that led to my brain injury. It was like a tape, stuck on repeat. Nothing, of course, could change because the incident had already happened. Yet, I went over every detail I could remember, and invented scenarios to change the end result.

Have you ever driven someplace while reviewing what TBI has done to you? I have. During these loop times, I don’t remember what I’ve driven past, and have often missed even very familiar stops. Sometimes hours can go by, and then I realize that I’ve spent all of that time in my mind, absorbed by what has already happened.

I didn’t know for some time that there were tangible and harmful neurological consequences from this constant loop of rumination, blame and recrimination. I confess that I continue to struggle with understanding these neurological processes. What I know is that engaging in constant rumination, review, and worry has a detrimental impact on brain functioning.

Growing a compassionate heart

Neuroscience research also describes the impact on brain functioning when savoring positive emotions. While brain injuries can cause permanent damage to parts of the brain, it is also possible to develop new neural pathways and to mitigate some of the consequences of the injury, through techniques such as Mindful Meditation for Stress Reduction and exercising compassion for self.

For me, compassion for self means making peace with the many dimensions of my relationship with TBI in order to live as full a life as possible. This is the hardest part. If you live with TBI, you need to find a way to live in some sort of harmony within it; find joy within its parameters; find self-love within its limitations. A maxim of so many traditions is that yesterday is no longer and tomorrow is out of sight. It is in today that we live and must find satisfaction.

Making peace involves coming to terms with the existence of TBI in our lives. It’s here and is not going anywhere. I want a life, now, with joy and the only way to reach that is to find some sort of reconciliation with TBI; to be gentle with myself, and demonstrate kindness for those I love who are also touched by my brain injury.

From this invisible illness, the challenge is to find a way to inhabit a gentle heart so that the symptoms don’t merge into fury; memories of whatever led to the injury don’t morph into a never- ending movie, always set on replay.

While TBI may be a permanent state, we can exercise agency over its progression. Learn to observe your thoughts and when the ruminations start, remember to breathe, be kind to yourself, focus on what is before you, and find a new thought that brings you joy.

It is hard work and requires attention and practice. As do all relationships.

#invisibleillness #traumaticbraininjurysurvivor #mindfulmeditation #compassionateheart #shewritespress #resilience #healing #ptsdsurvivor

JoAnne Silver Jones is the author of Headstrong: Surviving a Traumatic Brain Injury. To read an excerpt go to

Author of Headstrong: Surviving a traumatic brain injury, Professor Emeritus, Springfield College, Massachusetts, love family, friends, the ocean and my dog

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