The Cycles of Joy, Despair, Acceptance, and Healing

Sally Laux for BrainLine
The Cycles of Joy, Despair, Acceptance, and Healing

It has been eleven years, eight months, three weeks and six days since my brother Matt’s automobile accident in Louisville KY that changed his life, my life, and many lives, forever.

I don’t count the days, hours, or minutes anymore except for articles like this. I used to count every hour because time was altered and distorted from the life I had been living only days before. This year, the day of the accident passed without my even remembering the anniversary.

That was a miracle. I couldn’t imagine that day would come.

The word miracle is defined as “an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to the supernatural cause.”

Yes, it is a miracle that I am less consumed with Matt and his residual life as a traumatic brain injury survivor.

Yes, it was a miracle that Matt survived, and yes, the level of his trauma, the day of his accident, did surpass all known human and natural powers. And yes, there are days I wish he had not survived. That is the dark side for families living with brain injury. It is a thought and a conversation saved for only those who live and witness the exhaustion of living with, caring for or loving someone with brain injury.

Matt does not live with me, and I do not care for him day to day. He lives in a beautiful facility here in Delaware where we live. I lived here before his accident, and I moved him when his marriage ended, and I became his guardian for life.

This brings me to all of us who love a person with a brain injury. To all the moments early on when glimpses of them began to emerge. To the joy of hearing them speak for the first time—the relief of watching them breathe without a ventilator—the thrill of seeing them sit up, hold a cup and swallow. Loving them through the despair that sets in over time when you realize that life will never be the same for anyone. The exhaustion of having the same conversation over and over. The frustration and anguish of losing your patience with them when they need it most. The depth of sadness that crashes over you remembering who they were and how life was. The persistent grief of losing your loved one over and over as you recognize “they” are never coming back. I have finally arrived at acceptance…sort of. The cycles of joy, despair, acceptance, and healing go round and round.

Time blurred as I floated through the early years of adjusting to Matt’s new way of being and my new way of being with Matt. It did not / has not come easy, but life has calmed down and resumed a rhythm of its own. On an ongoing basis, I meet people who have “brain injury” in their family. Those of us who love someone with TBI are always relieved to find someone who “understands” the toll it takes. The unexplainable nuances of moment to moment worry, keeping at bay the emotions that tumble, and navigating all the lives newly constructed in relation to the “injured.”

 

I have learned many things over the time since Matt’s accident. With hope, I learned, and offer to you, that the most change doesn’t only happen in the first year. Matt has incrementally improved every day and every year since.

I have learned that brain injury is a family injury. All of life is different from that day forward. Our parents have passed away. Matt’s children are now grown. My two sisters and I are older and worry about the ongoing care of Matt and what will happen should something happen to us. As for Matt and many TBI survivors, he is stuck in time. He perseverates of moving back to Columbus, Ohio with his friends and returning to work. He can tell you years have passed, but in his mind, the concept of time doesn’t translate. Another loss settles in over-time as friends fall off and isolation set in.

Today, all these years later, I feel lucky, inspired, and blessed. My family stayed strong and united in aiding Matt. Many families don’t “survive” the accident. I have become inspired to better myself since coming to understand deeply how quickly life can change. I am blessed to have people in my life who understand the crazy up and downs of loving someone with a brain injury. I wish for you all the same as you calculate moving forward in your life. All the best.

Live with courage,

Sally

Posted on BrainLine January 25, 2016.

Comments (12)

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Wow, this was so powerful to read! I'm only one year caring for my husband after he suffered a massive stroke and life has changed so much that it's hard to believe it's all a reality.

Thank you for the article. Sobering. I have found a lessening of my mTBI symptoms with a much cleaned up diet. In fact, I can now actually function. I am a believer in lemon water in the morning, lots of clean water, low sugar, bone broth, cutting out all dairy, gluten, and junk processed food and getting some greens. I think enzymes and HCL (hydrochloric acid) help break down our food so our gut can process it. Also, stimulating the vagal nerve. Crazy, but yes, new findings in science show there are things we can do to help our gut which directly impact our brain. Neurological deficits can be reduced. Please give it a try. 

I will be 27 years post tbi this summer (car accident ) and often getting my family to talk openly has been difficult, I mostly contribute that to the fact I was so young at the time. This article was a great read, thank you for sharing.

Thank you for sharing. We all need to know that we are not alone. My son's accident was 10/21/07. A diffuse axonal injury that resulted in a non medically induced, 27 day coma. Hope for a better tomorrow is all we have.  Positive healing thoughts for you and yours. xxoo

Beautifully written and being a Survivor who's family struggled as much yet differently; I appreciate your honesty about living with someone with a brain injury. I know my family suffered great losses as well. Thank you for this important insight into what families go through. I can't wait to read it.

The details, although summarized, perfectly describe my life over the past 8 years!  My husband has diffused axonal brain injury and his accident occurred 05/22/08.  I have gone through, and still go through, EVERYTHING you've described as my husband's caregiver.  I have tried to walk away, but his mother pleaded with me to stay, and in essence, how could I walk away from the love of my life?  Keith is aphasic, so the last words I heard him speak were on the morning of 05/22/08 when he left for work. I am exhausted... physically, emotionally and mentally; but I have not lost my hope.

Thank you for writing this because I needed to read it, which gives me encouragement that EVERYTHING I've felt, you have too, and those feelings are perfectly normal for this situation.  I am thankful for a wonderful support network, but sometimes I hate having the same conversations that I've had over the years and the feeling that "what if" he didn't survive.  I know I'll never have him back and I wish I could make people research and understand TBI because it seems no matter how many times I tell the SAME people over and over... Keith will NEVER be the same... no, he will NEVER be cured of brain injury, no one ever does fully recover.  It's difficult to have patience when speaking to people about Keith, but I manage by God's grace.
  
So, thank you very much for writing this... I needed to read it and I'm glad the Spirit led me to read it this morning.  All of my prayers and God's love to you and yours!

I am deeply touched while reading this. My son is three years post injury, and my heart hurts just as deeply for his two younger brothers. Thank you for sharing your perspective. I believe your openness will help other's who are facing the same journey. Much love to you and Matt. 

Sally, thank you for this. We are sorry for the toll our injury has taken on you, our family. Know that we never wanted you to have to go through this, I our behalf. But thank you for standing by and taking care of your brother ("us"). May you be rewarded great riches in heaven, where we all will be made whole. God Bless, Andi (a fellow TBI survivor)

Awesome article

Living with tbi over 3 yrs. Maybe as a caretaker acceptance, just as the one with the tbi, is something you shouldn't rush or expect. let it be a process of anger, let yourself feel what you want to feel. It's a normal thing to have those emotions, do you feel guilty for him or you shouldn't feel it? feel it, and still take care and do what you can.. And maybe get help if you just can't that's also okay..

Thank you for sharing.  It is so encouraging.  Sometimes you think you are the only family going through this, you know you are not , but reading about others and their lives now that are so similar to your own helps a great deal to cope.  Thank you, and all the others that help the rest of us get through the day, remind us that we are only human and make mistakes, and do the best we can. God bless.

Thank you.  I needed this today.  My son is 5 1/2 years out.  We live in Dublin, Ohio.  I can not accept this and I am driving myself crazy.  I know all the things I "should" do and all the reasons I "should" be happy.  I can't do it.  I have never said that about anything in my life.  How do you learn to accept it?  Thank you for taking care of your brother!  You are an angel!