This holiday season I find myself wishing for the very thing I wish for every day of the year: peace. Peace, in times of turbulence, is something many of us wish for on a global scale. But peace also exists in small forms, beginning at home, and certainly within families who are struggling to stay unified.
Before brain injury, my husband, TC, and I found peace easily with one another. We fought occasionally and complained of small, meaningless annoyances from time to time, but our home was truly one of solitude. We were happy in our roles as spouses and new parents and were fortunate to live without many of the underlying tensions or stressors that plague other families and relationships. But as the story goes, brain injury did much to disturb the peace in our family.
In giving a quick snapshot of our post-TBI life, I tend to claim that the first year was all about TC’s physical recovery – it was an exhaustive, all-consuming effort to keep him alive and make gains while simultaneously trying to prevent everything else in our lives from falling into complete disarray. Little did I know, the hardest work was still ahead. The second year was about assessing the damage. For us, this was the movie scene in which the dust clears, leaving the survivors standing, caked in dirt and shell-shocked as they examine the extent of the wreckage. And in the world of TBI, it is an unfortunate coincidence that families often land in that moment of wreckage at very nearly the same time they’ve become depleted of their own energy, resilience, and patience.
For the first twelve months of recovery, I did a pretty good job of maintaining reasonable expectations of my husband. Because TC’s injury was so severe and the recovery so arduous, I did not expect him to take care of me as he once did. I did not expect him to walk perfectly, or speak in full, coherent sentences, or successfully manage his relationships with family and friends. I knew these tasks were too much to ask, and so I powered on, picking up the extra weight he once carried; and I learned valuable lessons about how to care for myself. But at some point, I got tired. And when I got tired, it became abundantly clear that the wreckage of our lives was extensive and that we had most certainly lost our peace.
In the second year of recovery, I learned how to be married to a survivor of brain injury. More truthfully, this is the year I learned how to be married, period. I learned what it took to work for peace amid great tension and I discovered what marriage looks like in moments when things aren’t going very well. To be sure, TC was improving rapidly, but this unquestionable blessing sent my own expectations spiraling. I was ready to be taken care of again, so why couldn’t he understand my needs and feelings intuitively? Why did his aphasia make it so difficult just to hold a simple conversation? Why was he doing so well and yet it never felt like enough for us to be happy again?
I began finding myself tempted into stupid little arguments, determined to correct TC’s speech or prove myself right in some way. I was ready - anxious and impatient - for us to be healed again and so I picked at the things that weren’t perfect, deluding myself into thinking this was helpful to TC’s recovery. Our fights began to sound familiar – the type I had heard from my own parents in those moments where one of them could not let something go or resist the urge to prove their viewpoint correct. I detested these fights as a child, took them painfully to heart, and here I was: engaging in the very same warfare. The message I needed to hear, I’d known all along: being right is not the same thing as being happy. My desire for perfection, which spawned my urge to nitpick, was doing very little to restore the peace in our family. Simply put, I needed to learn to let things be.
My husband is a survivor of brain injury. And like me, he is also a human. He was not born perfect, although my pre-TBI memories often seduce me into believing this myth. Alas, he was not perfect then, and he is not perfect now. He overloads the washing machine and puts delicate cookware into the dishwasher. He has trouble tracking the events on our calendar and sometimes he can’t think of the word he wants to say. On his bad days, when he’s fatigued and confused, he sometimes shuts down and blames me for being the confusing one. Some of this is challenging, some of it is silly and inconsequential, but most of it is best left alone. I am not perfect either, and I have no doubt TC has his own laundry list of complaints.
Letting it be isn’t just a task for spouses. Rebuilding our lives has also meant learning to tread peacefully in fractured relationships with family and friends. Traumatic events don’t always encourage people’s best behavior, so as we attempt to repair relationships and heal sore wounds, it’s been important to step back from old grudges and abandon that ever-alluring self-righteousness that threatens to skew our perspectives. Life is not a scoreboard boasting our victories. It’s an expression of how we see ourselves and how we treat others.
Learning to let things be is a lifetime task. Some days I do very well, and other days I’m so shortsighted I can’t see past my own nose. What I’ve noticed, however, is that on the days I simply let go and allow myself to accept imperfection or walk away from an impending battle, I am at ease with life and peace flows organically. During a season that often seems to uncover and amplify old wounds, it is especially important to remember that brain injury has left us each with our own post-traumatic scars. Caregivers struggle to understand survivors. Survivors struggle to understand caregivers. The best we can do is to allow ourselves an extra breath to ask, “What’s really important at this moment?” and then let go and let be, if necessary. Our lives and the people in them are full of imperfections, but if we can acknowledge each other’s scars and be generous in our assumptions about the people we love, peace will no longer be a thing for which we need to wish.
Comments (10)
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Anonymous replied on Permalink
Love reading your blog thanks so much for sharing your life warts and all!
Its 2 years for us now I'm still in shock at that .... 2 years! We have just ticked over the 2 year mark.
My partner Smiley suffered an acquired brain injury after a brain surgery of a removal of a benign brain tumor. He suffered catastrophic post operative complications & 10 days later and fell in to a coma in which he has never regained consciousness he remains in a minimal conscious state needing 24/7 care.
It gives me hope to read of others "recovering". I will always be here to love and support my partner he is the love of my life.
I am the point now after 2 years where I'm realizing that self care is important... its taken time.
Stay strong,
Regards
Deanna #SmileyDee
Anonymous replied on Permalink
This post brought a lump to my throat. How very true it is, that the first year is dedicated to physical recovery, and the hardest part follows.
My loved one who had a TBI is my young son. I have so many fears for him as he grows and develops, and the differences between him and his peers become more and more apparent.
I want to FIX him, but then I remember, I cannot fix him. I can just love him and support him and be the best mother I can be.
Thank you so much for the reminder to just let it be!
Sephora S.
Anonymous replied on Permalink
I appreciate reading your blog. though this is the first time commenting. I am the mother of a 30 year old daughter with a TBI. She was diagnosed with Post Concussion Syndrome after multiple concussions during high school both from sports and car accidents. We just received results form her third neurological exam, this one was much more extensive than the other 2. We have been struggling to get her the correct therapies to be able to go on with her life. I can relate to what you post about caregivers and have used your information to educate my family a little bit more. It is a slow process. Thank you for your insight.
Anonymous replied on Permalink
I love what you wrote, it exactly how I feel. My husband had a TBI a few months ago and thankfully he's doing amazing, but there are still hard days.
Anonymous replied on Permalink
Awesome so perfectly presented thank you
Anonymous replied on Permalink
I feel for both of you, and your families . The T.B.I is a struggle but also care givers struggle to . For both were not planning a total new way of living . So yes we must TRY, try and keep trying to make a life out of what we have been thrown into. Boy the brain injury survivor wishes really, really this has not happened to me . And the care giver is waiting for all this to come to a total back to where we were before brain injury . Both sides come together each day, some good days and others frustrating as heck . I give you lots of praise for hanging on to your hearts love . You both are giver's in many ways . I am a T.B.I. in 2013 accident . I wish I could go back and start that day over without an accident . But wishing has not worked . What has is the care giving of my husband and all my therapies and doctor's . Plus me letting go of the old me and be okay with the new me . Oh sure I slip back some crying where am I . Plus I can do things with out help. No, no I do need help and glad I can have it . Bottom line is we T.B.I.,s are struggling to be who we are now, and need help . We are sorry the care giver our love ones must go through heart aches . It hurts us, really does. Take care of yourself first and we will be happier knowing you first are okay. Thank you for sharing . GLF
Anonymous replied on Permalink
I pray that you hang in there. I know exactly were your at because this makes it my number three .yep three years and i have put my soul mate through so much i don't mean to. But i had blood on and under my brain what a mess because of this accident I have fallen down and broke both feet knocked teeth out got diabetes because of me not being able to do anything it's three years and i still have nothing but troubles I have a good woman but i have almost ruined it. So please hang in there don't let the man go through all of these changes that could be coming my partner has really had it I tell you two one thing after I fill nine feet on my head I could look down through red hazy clouds and look to the left and right and see white wings the Lord gave me another chance yep I love the Lord I pray all the time and they do come true. So thank you very much for listing to me that is another thing I can't shut up God Bless the both of you sincerely Max Griffith it's my third year.
Anonymous replied on Permalink
Wonderful insight and advice for any marriage or relationship. My husband is almost 8 yrs post injury. He's 62 yrs old and never regained his motor skills or speech. He's like a baby that will never walk or talk again. I'm just beginning to realize that I need to move forward with life and still remain his primary caregiver. I'm not sure what that looks like, but I have come to terms with the severity of his TBI. And I'm looking forward to the future.... Well what's left of it anyway. I'm 57 yrs young. The runway is looking a little shorter everyday. Lol
Anonymous replied on Permalink
Yes understand your battle with spouse I two have a tbi and it's been 9 years of recovery and learning how two fit in my new world. It very scary being a new person , just remember we do understand it not just about us and If we could go back and fix our brain we would ,I feel bad every day how hard it can be to communicate.
Anonymous replied on Permalink
wow, this resonates so much with me , it echoes how i feel most days although its only one year for us since everything changed .. i haven't got to the stage of being able to let things go just yet but i'm working on it. my partner , who has the brain injury and i have been finding life really difficult over christmas so it was heartening to read this blog and know we're not alone in feeling this way ; so thank you x