The Unfixable Mess Inside

The Unfixable Mess Inside

Back in 2002, when my husband was injured with a severe traumatic brain injury, I struggled to make use of myself. The mess was so huge, so incomprehensible, and so chaotic that I could not deal with it. The mess was his injury, his blank stare, his unfulfilled potential, his job loss, our relationship, our mortgage, our children’s well-being, my mental health, our finances—I lost my husband, my lover, my friend, and all of it felt like a huge, unfixable mess. All of it smashed down on top of me when a car hit his bike on a sunny day in April, and I had nothing but questions without answers.

Years later, I wrote in my memoir: “Containing my nervous energy has become impossible. I often feel like I’m ready to bolt.  I begin cleaning when I feel antsy instead of fussing over Hugh. Cleaning is therapy for me—a mess that can be easily wiped up or straightened out. The results are clearly observable: order out of chaos, beauty out of grime. People begin to comment about my house being neat all the time. ‘With all you have to do, how do you keep up with it?’ They don’t know this tidy space represents a fragile island of perfection on the outside that masks the unfixable mess I feel inside.”

I knew I was constantly anxious, over-protective, hypervigilant—a walking bundle of nerves, but I did not admit it. I put on a happy face and told the world we were handling things.

If someone you care about has a loved one who has sustained a traumatic brain injury and they tell you all is well, don’t believe them. Look beyond the surface. Brain injury can take years to stabilize. Your friend may appear super organized and look like a CEO of trauma, but she is probably breaking inside. So just check in. Be present. Remind her that you care. Run errands, clean out the garden, drop off small meaningful gifts, or just say, “I’m here for you.”

Because chances are, the caregiver and family dealing with TBI is overwhelmed and deeply afraid. They no longer feel connected to the outside world where people don’t have brain injuries—where they don’t even know what a brain injury is. And people need to feel held in love when a crisis hits, even if they can’t verbalize these feelings in the moment.

Please don’t be fooled. Messes aren’t always on the outside. Sometimes we have to look deeper.

Hugh and I were fortunate enough to have attentive family members and friends that showered us with love, concern, and help. They showed up to visit us in our shiny house, and it made all the difference.

P.S. Fourteen years later, my house is not nearly as neat, and I take that as a healthy sign.

Comments (26)

Thank you for sharing.

Rosemary, thank you. I've just found your writings today. Your presence inspires me to take a deep breath. I am so glad that your husband is recouping so well from his injury ... and that your family remains intact and loving. Yes, it is a hard slog for all of us affected by a TBI. I am a survivor -- both of many blows inflicted in childhood, several bashes to the head during adolescence, and a TBI sustained three years ago. I'm in my late 50s and this last injury seemed to be the tipping point. I grieve constantly for the losses that have come -- especially in relation -- my former husband, several friends, and a few relatives. Relations are often strained to the breaking point ... and I know that in some essential ways, I am a different person. TBI in combination with C-PTSD have rendered me into a personality I don't often recognize. Until very recently, I was single, and for a time, after several deaths of loved ones, I leaned heavily on my friends with whom I used to share reciprocal relations -- my three best friends have all detached from me. The grief is overwhelming and I wonder if I will ever return to being the person I was before injury. The loneliness is devastating with brain injury -- there is no escaping it, for the brain, in a sense, is the core of who we are, as well as the organ that regulates all functions and systems. The courage of survivors, caregivers, and loved ones is supreme. Anyone who remains in relation with a survivor is a hero in my opinion. It is so easy to walk or run away. ~ A point of interest: I don't see any articles anywhere that speak to those of us who are essentially alone and must be our own caregivers. This has been my experience for the three years since my injury. Many days I am amazed that I am still here, alive. I will continue to read your thoughts ... they soothe and inspire me. Thank you so much for what you have offered through your experience and your writing. Bless you and your family.

Rosemary,

I am enthralled by your book "Learning by Accident". It is a helpful guide as navigate my son's recovery. He was hit by a cab in NYC on 1/31/16, http://nydn.us/23BLxei.

After a 10 day coma, Tim awoke and his recovery is similar to Hugh's. Everyday brings emotional waves to Kathy and I. Incredible joy in his recent advancements, which are simple for the average person to the person. Tears, anxiety, and stress on the cognitive struggles. 

We are only on day-22, yet it seems like we've been here for a year. Your book gives us hope, but at the same time sets realistic expectations, as daunting as they may be. 

Thank you  !

my other half and I were in a HEAD ON ACCIDENT, I had a brain hemorrhage, he had a big bang on the right temple. I made it through with all injuries, broken neck, head, 7 broken ribs, collapsed lung (Im 68) and he had 2 neck operations, and head injury, he's not mentally doing well, he is also a brain tumor survivor. He has TBI, I have PTS, IT IS DIFFICULT, HE IS NOT THE SAME SMART MAN I KNEW, I'm having a hard time understanding, but your words helped, THANK YOU

I have goosebumps...I have the tbi and my house is super tidy, (I reckon if I got a box of matches, I'd probably tip them out and organise them by the size of the match head) but as soon as I'm avoiding, under pressure, stressed, I clean, clean and clean. Yes your right, by doing this it masks all the unmanagability in others areas. (The important ones, like insurance paperwork!!)

Thank you for this post. My husband is less than 8 months out from his severe TBI and I can relate to what you say. I try to just put one foot in front of the other and do all I can to aid his recovery one day at a time.

Interesting to read from your side...I have a tbi (massive hydrocephalus) from too many concussions, and cleaning something that's been needing it a while (shower, car, cat's litterbox) is one of my better coping tools. Proves I can still do something useful.

this article explains our situation exactly. Our son was involved in a four wheeler accident where he had hit the side of a pick up truck on Nov.12th 2012 at the time he was 14 years old. This turned our whole family upside down. My son who once enjoyed hunting and fishing and loved to play sports had come to an abrupt halt. My wife is an RN and without any hesitation she quit her job so she was able to stay home to take care of him.I wish I was able to help a lot more than I have. My wife pretty much does it all to keep everything together. She takes our son to school on Mondays, Wednesday and Fridays. Then off to therapy on Tuesdays and Thursdays. She is always doing something to enhance the quality of his life. What I am trying to convey is this woman is totally the most caring person that we could ever ask for. She stays home with our son every single day and very rarely complains about anything. To make a long story short, we as a family who has a child with a severe traumatic brain injury takes all of our time and attention for him and very little time for our two daughters or for each other. This is a life changing event that I would never wish on any other family..it will test you and it can do you in if you allow it to. I could go on forever about brain injuries, but it does change you as a person on the inside. We try to let our friends and family know that everything is alright when most of the time that is far from the truth. I am not putting this up here for anyone to feel sorry for us this is our story and I wanted to share it.

❤️, so darn true I do the cleaning thing but I'm the 1 with the brain injury but that's a good thing it makes me feel accomplished knowing I'm becoming more independent after a SAH & stroke in 2010 & still only having the use of one hand just yet 😊

I suffered a TBI several years ago and as I pushed forward to recover and be me, both me and my wife concluded the recovery by going together to counseling.  Our counselor asked us both the same question one night, "what is it you hope to achieve through this counseling?"  My response was, "I hope for my wife to recover because she had been through hell dealing with a husband who wasn't the husband she married, and I worried that whereas I may recover and be me again, that she might not."  You see, my wife was a person who needed to be in control and because of that turned away help from others.  This put her into a position she couldn't control and I recognized that she put up the facade.  I did recover, faster than most and to a level that I am more me than I was before, but my wife didn't recover and sadly we are no longer married.  So, yes,  be that person who does not accept that "everything is ok" statement and not only offer help but push them to accept the help because they do need it despite what they say.

This also holds true with brain cancer. Thank you for letting me know that I am not alone.

such a powerful message and something we need to hear. Thank you.

You have managed this so much more than I did. 6 years ago my husband was knocked off his motorbike and was severely injured, but neither of us put it down to a brain injury. I should have - his helmet, on his head, had hit the road 3 times with him in it. I know that he thanked the stars that he was alive, with nothing - as he was concerned - more than a dislocated shoulder. Later he had a mini-stroke, and he still ignored that. Three years later he walked out on me, just before I ended in hospital for surgery on my brsin aneurysm. I had a stroke after that, which claimed my language. It's taken me 2 years since then, living on my own and with most of my friends walked away, to have recovered a lot of my language. But, many days, I still live alone and I can never be sure that I have won. My ex moved overseas, I am still considered severely disabled and this is my life. My best wishes to you. Live well and love your life ❤

This brought me to tears.  You just put words to how I'm feeling right now.  Thank you for sharing!  

In 1980 , just two days after coming home from the hospital for an emergency C-section birth, my husband sustained massive TBI and many other complications.I understand the whole messy life.  My story is long and has not a happy ending so i won't bother you with that. The point, i know your pain. I feel it still after all the years of dealing with  "IT".  Take care of YOU . I did not.  GOD  Bless you and your family..... Nicolette G  Parsons..

I enjoy your description of the shiny house being a island, in the middle of chaos. Your feelings are very well put and very well understood by me, the victim of a traumatic brain injury. My prayers for you and your family.

Thank you for sharing.  It's been 17 years since my son's TBI and I understand.  He is now 43 and has improved amazingly, but I know and I see and I pretend.  I've just begun acknowledging the pseudo-life I've lived since his accident and it does feel good on occasion to recognize myself again and to let go of the anger I've felt over the years.  You have put into words that which I couldn't.  "The Unfixable Mess Inside" can be acknowledged and feelings worked on.  May God continue to watch over you and your family.

I'm a severe TBI survivor, January 2003.  I found your post touching, you found an eloquent way to share a situation that is all too real.  I thank you for writing it, you have an incredibly perceptive view, I've never met someone who's a caregiver that has had such a clear understanding of our struggle?

Some of us with the TBI are aware of this also but unable to change or help the situation...  We see what it is doing or has done to the lives of those around us and we have to live with this everyday also.  

Thank you, now I know what to do, even though my TBI survivor doesn't live in my home, he NEVER leaves my mind.

Thank you for this!  It is spot on!  

This said it all for me. When I am sweeping the porches, I thought how relaxing this is. I wish it were that easy to sweep tbi away from us. I have been alone in my struggles with my husband being a survivor but I have managed somehow and with my Heavenly Father's help.

Thanks for the tears, and for putting words to my feelings. Sadly, it's comforting to know I'm not alone in these feelings.

Thank you for sharing. I feel each and every emotion and situation you just wrote. The only difference being the injured was my son. He was 15 at the time and didn't want to receive any help or intervention and continually assured me that he was OK and that I was just overreacting. 5 years on I can still see the effects this injury had in him, he still suffers with memory recal lissues and is much more short tempered than he used to be. I feel I'm continually trying to smile on the outside yet I know his issues are going to haunt him but he is now a 20 year old young man and I feel helpless.

Rosemary,

Of course "all is not well." Depending on the timeframe of accident, a TBI is not something a caregiver or the sustainer of such, adapts to well, immediately. It takes time and sometimes he or she never gets comfortable with the sudden change that has occurred. Many circumstances are in play as to whether it is an infinite journey of the heart or a modicum of mercy comes forth an allows the perception to travel the necessary timeframes for the adjustment of the refractory lens. Quite a mouthful included in that line but it is an astute assessment of what lays ahead of the journey. For the journey is not some hypothetical gerrymandering professed by an MD. It is "real" an all alone sits, stands, the sustained, of a TBI. Take ownership immediately!!! AC

Rosemary,

The human instinct of survival sets in. You feel absolutely lost but slowly the terrible calamity faced causes the mind to slip into gear and somehow approach this unthinkable event. And now, thinking back, you don't know how you managed to cope and deal with the problem.  But you did ... and turned what seemed like a "severe undoing of life"  into something never imagined ... it is what it is because it is ... we find the "is" in time ... space and time encompass this life when you think about it. You filled it with a progression of acts never could have wished on anyone ... an you survived and grew ... inward an outward you grew. Turned what could have been a devastating occasion into something that resembles a balancing of the karmic wind that swirls continually amongst us all. East, West, North, South ... bring it on, is the cry, for thou is not shy in the face of the fallen scepter. Rise, rise, rise, I must ... for the light to return in the eye of the beholden, Hugh, who once knew a story of old. Now, the page has turned and begun anew goes Hugh ... with Rosemary!!!

Art