Lately, I’ve heard from several TBI spouses who are right around the one year anniversary of the injury that transformed their loved one in challenging ways, and every one of them has written me some form of: I am not happy anymore. I don’t like my life, and I feel like I’ll never be happy again.
I wish I had a magic wand I could wave to help others heal or to ease their emotional pain. And although I consider myself a writer, I’m not so sure I have the words to help because I went through these same feelings and found there’s no easy bridge over the raging first year of caring for someone with TBI. This is the hard stuff of being human, of witnessing a horrific event and Herculean struggle as we wait for time to work its magic, and maybe even a miracle.
Caregiving spouses spend a lot of time and energy praying, hoping, and wishing for their old life to return after a loved one sustains a TBI. Here are just a few of the wishes I’ve heard:
- I wish she would be the responsible mother she was before the accident, instead of a wishy-washy sentimentalist.
- I wish he would stop blaming everyone else for his angry outbursts.
- I wish she would do something—she never wants to do anything anymore.
- I wish he would better groom himself. He won’t take a shower or shave without a fight.
And, the one everyone says, “He (or she) is just not the same anymore.”
Life changes in a million small ways that others cannot see when a loved one is suddenly brain injured. Few understand why caregiving spouses are grieving. After all, you should be grateful that your loved one is still with you. Right?
Of course…and yet….
When we struggle against ‘what is’ we cannot see our lives clearly, and therefore, we cannot learn from our experience. When we constantly look for something that no longer exists, we spend precious time searching for ghosts, grabbing at vapor. And while we’re busy stamping our foot at the injustice of our circumstances, time is passing us by.
I’ve been known to say, “It is what it is,” which sounds passive, and yet when I say these words, I’m letting go of my stubborn wish for things to be as they used to be. I’m acknowledging things as they are without yearning for something else, and I usually find that I feel a little more peaceful when I accept the blatant truth. I might let out an exasperated sigh of resignation now and then, or even burst out laughing at the absurdity of life as it presents itself; or I might have a good cry—it depends on the circumstances.
Facing the truth of my circumstances while resisting the temptation to blame or feel cheated seems to make me behave differently and react differently, and that’s what I have found is beneficial. Once I accept things as they are, I find myself taking action in the flow of what is instead of criticizing, arguing against, or crossing my arms over my chest in protest.
And then I’m moving again. I’m moving forward, as they say. And in my moving, I begin to see new perspectives I didn’t notice before. I begin to listen and hear with more than my ears.
An insightful article by Olivia Downing on liv mindfully points out three ways we might respond to our problems in everyday life:
The first is Giving Up, and it includes “dropping standards, learned helplessness, being described as lazy or complacent, or feeling depressed.”
The second is Acceptance, and it includes: “Acknowledging what is, waking up and embracing life, chilled out and realistic. The typical emotion associated with this state is contentment.”
The third is Striving: “Wishing things were different, never content or peaceful. People might describe this as driven; emotions related to this state are frustration and anxiety.”
As caregivers for loved ones with brain injury, we can get stuck in the first and last states very easily: giving up or striving. Giving up might look like ignoring someone, separating or divorcing, or drifting away from those we love without caring. Striving might look like someone pushing another person to change what cannot be changed. Tension and fighting result in an endless cycle of criticism, of rehashing failure instead of seeking something valuable like a quality worth loving in a person.
But acceptance offers us a way forward. Accepting is not remaining stagnant; it is dealing with what is. Acceptance is a Zen action verb. We see what’s actually happening, and we deal with it, we move through it.
Acceptance is not giving up. It’s where I want to be every minute of the day with eyes and heart wide open. When it comes to the hard questions about being human, we can only answer them if we are looking clearly and honestly at the reality facing us and take steps to move through each situation as it presents itself. And hopefully, what follows, will be peace and maybe even contentment.
Comments (12)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
Thank you for this blog. I am a caregiver for a stroke survivor. Stroke causes a "brain injury" as devastating as TBI. My life (our lives) changed in "the blink of an eye". Your blogs are most helpful. Have you ever done an article on the "loneliness" experienced by caregivers as they take over the responsibilities of their own lives and the "new life" of the brain injured individual?
Anonymous replied on Permalink
Your saga gives the perspective of the caregiver and also the insight of the responsibility thrust upon one which exhibits how a TBI does not affect one person only...the caregiver is stuck between a low and lower place, also. Caregiver can only "feel" and observe the actions taken...be they right, wrong, good, bad...but know, oh caregiver, the more effort extended is not always the correct path to plod...pullback sometimes and loosen the grip. Allow for pain and rejection to flow forward to your loved one...less can best, at times...a TBI is pain personified...so, let that pain be experienced as it should be...it is a constant an it can become a friend if allowed, in time. Antipathy on your part does not reduce what is felt...overcrowding one, psychologically may help the caregiver but doesn't help nor hurt the person afflicted by TBI...it is useless energy, stagnant. Distance oneself, slowly...and in time, nature will have filled the void...!
Art C
Anonymous replied on Permalink
Your comment is very encouraging to many! Thank you for sharing your indomitable spirit! Rosemary
Anonymous replied on Permalink
That was very helpful. Thank you.
Anonymous replied on Permalink
I suffered a traumatic brain injury in 1995. I felt I was mourning a death of my persona and my identity. It took many years to overcoming these feelings, but once I took control and accepted the new me I blossomed and became ten times stronger. It wasn't easy having to re-learn all the basic things we take for granted in life however it was empowering and challenging and I am here today feeling a great sense of victory.
Anonymous replied on Permalink
Great words!!
Anonymous replied on Permalink
Beautiful article, Rosemary! It is beautifully written and such beautiful sentiments. The Serenity Prayer is one of my favorites and this illustrates that process of discernment (knowing when to accept).
Anonymous replied on Permalink
Great article. My first TBI was Oct 11, 1978. My second was Jan 31, 2014. Most folks don't realize about either. I have noticed several things about me that are different since the second. I have written a simple book for caregivers & their Loved Ones. "I Didn't Die Because God wasn't Finished With Me Yet" on Amazon. It was written from the TBI perspective to maybe help others. There is another chapter still to be written. It needs editing. There's a lot wrong with it but some helps can be gleaned.
Anonymous replied on Permalink
What a great article this is. I have a brain injury following Encephilits and its a very hard road to come to a place of acceptance but i have found that to really be here in this moment and to accept what is in that moment is the only way i find peace within. Some days i still fight against what is and i suffer for it, fighting the realisty of what is only makes me miserable when i can accept how things are here and now not looking forward or back i find a peace more amazing than i've ever known before so there are gifts in Being with what is. Loved this article and to see this being spoken about. thankyou.
Anonymous replied on Permalink
I also received a TBI in 1991 ~ the 24th anniversary was a little over a month ago.
For many years I was stuck in a mindset that I would return to what I was doing before my accident. I had been on the road to the fast-paced working world. I don't have obvious injuries and people told me there was nothing wrong with me. And though I still had drive, my tolerances for life had changed. Along the way I was diagnosed with 'major depression' but still tried to resume the life I had prepared for. After many attempts and failures, I realized that God had me where He wanted me. It was only then I was able to accept my lot. It's been a couple of years and I believe I've grown in many ways, I like my new road.
Anonymous replied on Permalink
Clearly stated. Thank you. This is true for all caregivers/advocates of people who have sustained an ABI. It takes some time to come to this place of acceptance where patience and a sense of humor take the place of frustration and anger.
Anonymous replied on Permalink
I suffered a TBI in 1991 and I know that acceptance does not mean defeat. I lost all the motor skills on the right side of my body, my balance is terrible, I see double a lot and am just all around "different." I had to learn to do all sorts of things differently, and there are things I can't do anymore, but I believe I am a better person now than before my TBI. Once I accepted that I would never be the same (it took a while, and was a gradual thing) I freed myself to look for new ways to accomplish the things I had done w/o thought before.