How many of us, TBI survivors, do things or say things only to wonder, minutes later, “Why did I do that?”
We go through our day-to-day lives, doing the best we can as we try to “normalize”, and we often find ourselves doing these things we think are normal when they aren’t at all. It becomes routine to do things without understanding why or thinking anything about them; including how others might think about what we have just done.
Even though we have had a brain injury, we don’t always connect that fact with the way we are behaving or the things we do.
Hopefully, we, brain injury survivors have that “aha” moment when the light bulb finally goes off and we suddenly realize the truth that has been eluding us: that the way we have been behaving has been strange at times, and it is because of our brain injury.
When that happens, a life that hasn’t made sense suddenly does make sense, if only for moment, and we think, “That’s why I do that!!” Life might not get any easier, but at least we know.
It’s like the realization you get when you go to your first support group meeting and you suddenly realize that: you are not the only one.
Evolution
What all our injuries have in common is that each of us survivors attempt to go about living our lives, not always aware of why we do the things we do or behave the way we behave. Then, at some point, we may have that lightbulb moment when we realize what we have been doing is strange or different.
In my case, I just went about living my life, not knowing why I did certain things; not even being aware that some of the things I did were looked at as odd by others.
You would think I would understand that being in a coma for month would have some kind of impact, but I didn’t always see that I was being affected by it.
I was asked to serve two-year term on my temple’s Board of Directors. I completed my term without saying more than five sentences, and the worst thing was, I didn’t think anything was out of the ordinary. I never thought it was odd that I wasn’t saying anything. Nor did it ever occur to me that the reason I wasn’t talking was because the dialogue was too fast and too confusing.
Being Appropriate
Another example was when I went to see a vocational rehab counselor, 25 years after my injury. I prepared for the appointment: afraid it was going to be hot in her office, I brought along a light shirt in case I needed to change. Without thinking, in the middle of the appointment, I stood and started changing my shirt because I was hot.
She reacted very strongly, telling me that it wasn’t appropriate for me to change in her office. I heard what she said, but still didn’t understand, because in my mind she was a doctor and this was a doctor’s office–it should be okay to change here.
There are so many things I’ve done or said throughout the years that have seemed perfectly normal and acceptable to me, but were inappropriate or wrong to other people. I had lost the ability to think outside of my own little world.
I was fortunate to work in a family business where many of the “quirky” things I did were accepted and never mentioned. One of my behaviors was this: when I was in a management meeting I would get up and simply walk out when I got overstimulated. After I had time to decompress, I would go back as if nothing had happened and no one would say anything to me about my behavior. I had no idea what I was doing was strange or unacceptable, but everyone else noticed. I heard later the secretaries in the office would say, “There goes Jeff again,” as I walked by.
The Bulb Goes Off
I had been working so hard to act as if my injury wasn’t there, just doing these type of things and not thinking anything about it, that I went a full 25 years before I began to understand. Oh, I could see the cognitive issues alright, but what I didn’t understand were the emotional and behavioral issues; the poor judgment I often exhibited, or the anger. I did not understand why I would sometimes rage, and why I raged at the things I did. I didn’t understand my frustration, and how my frustration would turn so easily into anger, even though other people would be shocked and upset.
For 25 years I knew I had a brain injury, but I didn’t really know what that meant.
After 25 years that light bulb went off my head, and the last 16 have been a time of self-discovery. I can look back at the things I have done in my life and at the situations I have handled poorly, and can finally understand.
Knowledge is the gateway to understanding, and for us, understanding is the gateway to a better life.
Thanks for reading, Jeff
Jeff,
I enjoy reading about your journey to make sense of life after brain injury. Like you not much makes sense and I have learned to not say much and to watch the people around me to measure their discomfort and to not be apoligetic for my own.
At first I overshared and over compensated. Now I am much more measured with the way I interpet my world. I do my best to approach most anything with a centered calm. Thank you for sharing your blog, Your observations are timely and appreciated.
Wow, Jeff, this post has particularly blessed me today. I have been struggling still with the inappropriate things I do now living in the wake of a traumatic brain injury. For some odd reason, I keep leaving the keys in the door only for my roommate to find this out the next day. Or I’ll just leave the house with the door partly cracked altogether. This troubles me on many levels because I was so good at multitasking and remembering everything before the accident almost 2 years ago. My life, nursing career, and many other things are on hold. You are so right about knowing that you have a brain injury and then knowing what that means. I’m beginning to truly understand my brain is not the same anymore. Thanks for sharing with us.
Another great article. ‘Why did I do that ?’ happens to me every day. It has taken a long time for my family members to understand that I will make these mistakes.
Thank you Jeff- I am hearing everything you said….everything. Thank you
Jeff, your blogs are real and relate to my 24 years of carrying on in life without any support for my TBI.
Thank you that there is somebody like you.
That blog about the lonely man with TBI, was powerful.
How are you with memory or anxiety when handling with a lot of grief in a short time? I have had my Brain Injury for over ten years, the last three years I feel myself really going backward to the point where I had to learn tools for living a life with Brain injury, but now doing it alone. I have been falling lately, last year was diagnosed with Brain Cancer. Thankfully I found it early. Had surgery and radiation and have given me the good news I am cancer free. It was stage one. I feel our local brain injury society has put the brain injury members on the back burner and consibtrating on the homeless as they do get a lot of funding from BC housing. My friend was one of the founder of the society here. The main focus was on helping people with brain injury. Now there are programs cut, one being our ladies group who have been meeting for ten years plus, and since they stopped it we have all been have emotional, memory, and the unity we had. My problems have started when the society closed down our group. Thank you
Judie, Handling grief or anxiety when you’ve had a brain injury can be very difficult. I found that anything that happened in my life that added to my daily stress was difficult to deal with. I went out of my way to create a life I could understand, and when something messed that up I was in trouble. To me, the key is finding ways to avoid stress. However, that is to always possible so we have to develop and understanding of how we react to the stresses in our life so we can better deal with them. I know, that’s much easier said than done, but we all have to find the ways that help us live the best. Look for ways to return to the person you understand.
my lightbulb went on after 48 years and i am stuck.
my working room is always messy and i reject any offer of help to tidy it as I know I’ll never find anything again. I get angry when confronted and feel worthless. I feel overwhelmed most of the time and have problem finishing things or even staying on task. Ive lots to do but don’t. How can I stay motivated?
You can stay motivated by having a purpose, by developing a reason for the things you do. You have to work at finding a purpose…your reason for being. You might want to start by looking for things that inspire you and drive you to be a better person. It’s hard when you have a lot of personal stuff that seems to be getting in the way (disorganization, anger), but concentrating on something outside of yourself will help get you out of your own way.
My light bulb went off in September 2016. I had asked many doctors if something had happened to me as a child. There had been a rumour which my mother denied that I had a near-drowning and was in a coma for 3 weeks.
Five years ago I suffered a concussion and was knocked out, my head bled, suddenly I was feeling the cold badly – the empty mind-state that I had suffered 30 years earlier returned with a vengeance and I became a stranger to myself. I was reactive, tearful, felt no joy and of course this impacted my marriage. A very ugly divorce ensued, my stress levels were beyond control. My doctor was reluctant to put me on medications for fear I would get much worse with an impending trial ahead of me. Friends dropped me like flies, my then husband goaded me and pushed every button from my childhood.
Unknown to me I was having a sensory overload melt down. I was so frightened I took myself back to my doctor only to be told I had indeed suffered that near drowning, a severe head injury and coma for 3 weeks … I was 2 at the time of the accident, I am 59 today.
After the initial shock anger replaced it – why had my family refused me such important information? Why? My past started making sense, the hopelessness and despair that would appear from nowhere, the bouts of anger for no reason, how after every surgery doom would fall upon me weeks later.
My doctor said my family and the NHS had failed me hugely, there were surgeries I should never have been put through, medications I should never have been given as they are known to affect brain function – WHY? – because those little words NB Age 2, near drowning, severe head injury, coma 3 weeks, residual unequal pupils had never been lodged at the top of my medical notes. In 2006 I was diagnosed with low-grade lymphoma and underwent every imaginable test for 6 months, meanwhile I was saying to my doctor I believed I was just suffering from severe anxiety and all this testing wasn’t helping – guess what, I had suffered an intense asthma attack a few months earlier. In the midst of all this testing someone made reference to my childhood injury, obviously I was a conundrum, all tests were coming back negative and low and behold after much discussion it was decided to reverse the lymphoma diagnosis – yet no-one thought to tell me. I suffered a further 10 years not know why I was who I was yet I knew something was wrong. I have now accepted brain injury and actually commend myself getting this far not knowing. I achieved much during my working years and was proud of my good days. Sense is finally make sense of nonsense, labelling me as my family did, lying to me as they did has made me want to have nothing whatsoever to do with them – how different could my life had been had I known. My lostness led me to ask my mother if there had been a twin that died at birth – I was called a drama queen.
Well now I know I wasn’t, the pictures of me before and after my injury are of two quite different children. Thank you Jeff for expressing all I have felt so eloquently. I am determined to rise from the ashes. Namaste xx
Jeff,
I cannot thank you enough for your blog. I am moved to finally comment today on “So That’s Why I Do That!!” because in November my daughter will mark her 25th year as a TBI survivor. She was a junior at Gallaudet University in 1992 when a car crash upended her life and although she has come a long way, she has yet to have that AHA! moment. You are the best company we could have on our journey!!
Every good wish,
Judith
It is an honor to be of service. Thank you Judith.