This week’s guest post author, Rob Dunn, talks about the consequence of when families try not to acknowledge that a brain injury has changed their loved one. In his case this was taken as a caring response to a dreadful event. However denial might feel like a way to protect a survivor, but it’s not, as it doesn’t help improve their reality. As Saint Bernard of Clairvaux said, “The path to hell is paved with good intentions.”
ABOUT ROB DUNN: I HAD TBI IN 1988, AGED 10, BUT ONLY GOT CONFIRMATION OF PARTS OF BRAIN DAMAGED IN 2012. THAT’S 24 YEARS LATER. THAT IS A LONG TIME TO NOT KNOW WHY I SEEM TO BE FINDING PARTS OF LIFE SO HARD. AND TO ALWAYS BE TRYING MY BEST, WITHOUT THE EXTRA SUPPORT/HELP I NEED. 24 YEARS OF NOT REALLY UNDERSTANDING WHY I DIDN’T LIKE BEING IN LARGE GROUPS, WHY PEOPLE COULD DO THEIR WORK BETTER THAN ME. WERE THEY TRYING HARDER THAN ME? WHY WAS IT EASIER FOR THEM? TURNS OUT, I WAS/AM TRYING HARDER THAN THEM, BUT NEED REASONABLE ADJUSTMENTS, RESTS, BREAKS, EMAIL CONFIRMATIONS, TO MAKE MY WORKING LIFE EASIER.
March 1988 was a special time for me. My life changed. I was struck by a Jeep with bull bars. As I lost my memory, I don’t really know how it changed. I was only 10 years old, so I’m sure I would have changed anyway, but at least I’d have known how.
But going from being very clever, bursary level at private secondary school, to not knowing why writing pages had lines on them, was irritating for me and very difficult for me and my family. I still remember being asked if I knew what our house was when being driven back from hospital, and the unsettling, unknowing answer I had to give…no. I didn’t know. Don’t you understand, I’ve lost my memory. Denial.
I don’t remember much about being in hospital, or not knowing my parents, sister, family. But I think that’s mainly because of post traumatic amnesia!
Now this was 30 years ago, so I must have learnt how to live with brain injury by now. For first 25 years, I got no help in understanding the parts of my brain that were injured or how to make reasonable adjustments. No help. Why wasn’t I given any help? Denial. Why did I get the impression I had to be the same as I was before? Denial. I lost my memory, so had no idea what I was like before anyway!!
It makes me think how much I accomplished in first 25 years of injury, managing to hide my brain injury from everyone, employers, colleagues, me, and how much I’ve accomplished since, learning to use reasonable adjustments in my work and home life. My wife noticed how I needed extra help remembering things, and she suggested I get my brain looked at. Why didn’t my parents suggest this sooner? Denial. Some of you may have noticed this is the fourth time I’ve mentioned the word denial.
I vaguely remember discussing denial with one of the neuropsychologists I saw, 25 years after brain injury, a few months after a MRI scan. The neuropsychologist told me that families are often in denial, as it’s easier for them to cope with the situation, and they think it will make it easier for you, to treat you the same as you was before. I think it’s often easier for close relatives to pretend there’s nothing wrong, as it’s easier for them to deal with. In their eyes, that helps you be the person you were, you were meant to be. But a big, difficult part of brain injury is realising we are the people we are now, post injury. And we are still the people we are meant to be. Survivors; strong, determined people, who will learn to happily live with a brain injury.
Extra effort to concentrate is tiring, and some things are confusing if I lose my concentration… I’ve learnt/been told, that after I feel confused/loose concentration, I should rest for a few minutes. Thanks, occupational therapist!!
And there are benefits to having poor attention.
I can watch the same programme, over and over and over again. Or read the same book, over and over again. I can use my reasonable adjustments at work, without anyone knowing. Being discharged by occupational therapist felt amazing!! Being able to achieve things makes me feel special. Think of all the things you’ve achieved post injury. How special does that make you feel? Living with brain injury does get easier. Sometimes, it might even feel normal.
When I think of how tough, confusing, difficult our paths can be, I remind myself of how proud I am, that I am a survivor, and I can get through any difficulty thrown at me. We are all survivors, and we can get through any difficulty thrown at us. Even if friends, families try to help us, by denying we have hidden injuries and do need extra, reasonable help/adjustments. We are survivors.
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10 replies on “Guest post: Rob Dunn on family’s denial of brain injury”
Hello Rob, wow you are a warrior!
What a difficult time you have had all those years, knowing something wasn’t right, then having to deal with it all later. I wonder if your family had looked into your brain injury if you would be any different? You seem to be a resilient and have adapted so much in your life before getting the professional help, that’s amazing!
Unfortunately unless you know what it’s like living with a brain injury, people have no idea of the daily struggles, people assume a lot, because you look ok.
My family are great, they’ve seen me at my worst and know when I am struggling. Friends are different, many times if I am struggling in an situation, they seem to think just turn the music off, or go and get some fresh air and you will be fine, I’ve given up explaining now, that everything has a knock on effect and the damage is done now, I need to go and lie down away from everything and I will probably feel like this for days now.
I like that you are proud of how far you’ve come, we can sometimes forget this. Best wishes. Joanne
Hi Joanne
Thanks for your kinds words and support.
I sometimes think about how different I might have been if my brain injury had been looked into in more detail at an earlier stage. (Well quite often if truth be told!)
But, there’s nothing I can do about it now. All I can do is make the best of the understanding of I now have, thanks to neuropsychologists and occupational therapists.
Whilst, it is sometimes frustrating to see how easily people/colleagues respond to queries, etc., and thinking I could have/should have been like that. I have to let it go, and appreciate the situation I am in now, and work with my brain injury, not against it. And be proud of all of my achievements.
Kind wishes,
Rob
Dear Rob,
It would appear you and I share similar families. I am three months off turning 60. 16 months ago I was informed by my doctor I had suffered a near-drowning when I was 2. There was also a severe head injury and I was in a coma for 3 weeks.
For years I asked my family if something had happened to me, I felt “odd”, but was merely told I was being a drama queen. There have been further “concussions” in the intervening years, none of which I followed through medically, so further damage to a very sensitive, under-developed brain.
Things are beginning to make sense now, the deep depressions from nowhere, the speech aphasia, the no holds barred honesty I was so proud of but now cringe in hindsight.
My siblings still deny it ever happened despite it being all over my medical notes – why was I never told?????? I am angry, I could have protected myself from further damage, like you I question how different a life could I have had ????? Betrayal by those you love and trust …… WHY?
Yes, we have done brilliantly getting this far without the rehabilitation which was our right. Yes, we have a right to our anger and despair. Yes, we should feel a sense of pride that we have overcome such a level of adversity that so easily could have been so much worse.
I raise a toast to you Rob, well done – your resilience befriended you and brought you thus far. Big hugs xxx
I really hope that we can re-educate the world to stop making these mistakes with their children. They say children are actually very resilient and adaptable, but only when you take the time to tell them the truth.
Rob, Thanks for sharing. I can definitely relate. My TBI went undiagnosed for almost 58 years (I’m 66 now). I fell off a playground slide at age 5 onto a hard blacktop surface (to me, one of the biggest achievements of the 20th century was the realization that concrete is probably not the best choice of playground surfaces, ranking right behind the discovery of the automobile and aeroplane). Apparently because I didn’t show any external signs of injury, no one thought there could be any internal damage (realize this is 1956 before MRI’s, CAT Scans, or really much brain trauma awareness and treatment).
Unfortunately my father didn’t realize that my resulting “abnormal” behavior was symptomatic of a brain injury and concluded that childhood rebellion and self will was an accurate diagnosis and in those days corporal punishment was the best behavioral remedy. Only it didn’t work, but not for a lack of “effort” on his part. It wasn’t till I ran away from home at age 16 that the physical and emotional abuse stopped…from him.
One thing that I realized from very early on after my brain injury is that my struggle was not just with trust issues with my parents and authority figures – being punished for doing things that I didn’t understand were wrong because my brain didn’t process things properly anymore, but that I had trust issues with MYSELF. My own brain, my ego, my mind was leading me astray without my permission or knowledge and getting me into trouble. Talk about confusion and choas. Being a toddler is challenging enough, having to learn new skills, learning to make decisions, but to be a child who is being physically and emotionally abused and forsaken for what he does not understand or willingly choose as a result of a TBI is a recipe for an emotionally dysfunctional adolescent and an irresponsible, emotionally disabled, distraught and decimated adult- which I became. But now that I know the real reason why I was the way I was and that I wasn’t at fault makes it easier to live with my past and present reality (and to forgive those who abused me thinking they were somehow “helping” me). Knowledge really is power.
Another sad story of how families can get it so wrong ?
Our struggles seem so similar, and yes, knowledge is power.
I leave you with this quote I now hold dear to my heart = The truth brings the past into the present and prepares us for the future.
That’s what truth does/ (Maya Angelou)
Hi rob when i read ‘I can watch the same programme, over and over and over again’
i had a giggle to myself
i see it as my superpower, i know what films i like, but can’t remember the details or story, so watched so many films time and time and time and time again.
it’s a Super Power not a Deficit .
After reading your story, it sounds similar to mine. I too had a road accident when I was 10 back in 1984. Like you I was, as I put it patched up and sent back into the world. My physio was not specialised I remember going to a class that had old women and a boy who had broken his leg!! I had 6 months off school. But like you the proceeding years I developed determinination to be as good as my peers. However I am now breaking down the emotional wall I have built to hide my injury from the world.
Sounds like you’re going through a difficult but important process. Hugs xox