What's it like living with a traumatic brain injury?

This is a question that I get a lot. What I really want to say is just f*** off! Its none of your business. It’s my life my body my experience that no one else needs to know about. When I tell people that I don’t want to talk about it they suggest blogging or vlogging (which is very popular where I live). How do I tell them that I need time to process my thoughts before I even think about vlogging or blogging. Any suggestions???

I will be honest, this question has never been asked of me in 11 years?..I find that odd?
I guess over the last past 4 or 5 years I might be able to answer better, because it being so complicated…

If it bugs you that much, I guess come up with a sarcastic answer that sends a warning shot right back at someone!..Kinda just a generic but snarky rebuttle, if people keep asking you, let them understand it bugs you.

This then to work through them all to come to a logical response is a challenge. Often my initial response to questions is ‘short and sharp’ but sometimes I’ve found that the ‘sharp’ component comes across too sharp and can be taken as offensive,. It’s not my intent, but at times my tone can override the content. So, I just say "…ohh, it’s ok…"
If people probe a bit further then I use my previous knowledge of disability and explain it as 'Everybody’s different, ‘cos every injury is different. So same with the results, all different,’ There are obviously those who think they know all about it. They don’t. The sooner I came to accept that fact, the less offended I was by some comments. I’ve lost count of the number of “Ohh I have a friend who…” or “I have a family member with a brain injury…” but as I’ve said previously “If you haven’t been here personally, knowing this personally is impossible”. Some people make comment to ‘comfort’ (despite our interpretation). Now that I’m a bit more aware, I just grin and bear it. I’m the one who has to manage it, nobody else.


If you feel the need to explain your TBI you could express how your mental connections go haywire and from this you feel mad inside. Also, because of your TBI, you may feel more “storm-tossed” than you did before. For me, when my mental connections go haywire I will feel violated and overwhelmed, powerlessness and hopelessness, shameful and misunderstood, inadequate and defective, self-doubt and emotional vulnerability, secretive and then hide from people. I have deep emotional reactions, the madman attacks, and if I fixate on these emotions the inner commentary always lets me down. If I can catch myself just before the commentary I try to let go, to act on principles rather than my moods, and move into objectivity rather than subjectivity. This place just before the fixation plays itself out, just before I feel like a victim or extremely self-conscious, I will admit is hard to catch. Yet if I can catch myself just before I feel profoundly cut off from others or life and let go of my inner deficiency it usually creates this act of kindness. It seems create an act of kindness, rather than a misguided search for myself.

I would welcome inquiries on my ABI and life after it; however, I cannot recall one person asking me “What is it like?” No one, and that is a sadness in and of itself.

Everyone, even non-BI persons have that one intrusive friend or family member who asks too many personal questions. My response to probing questions is to simply speak my truth. I will say, “I am not comfortable discussing this subject with you.” Or, “I find your questions intrusive, would you please stop asking me about it.”

How you decide to address this concern is ultimately your choice, I do wish you well.


I get the same question asked to me too. I change the subject. I really don’t want to be reminded how it all started. What caused my brain injury. I can tell you the honest truth my brain injuries was not my choice to have TBI. It all started back when I was seven years old…through the decade of all the years I had a few brain injuries. I feel my dreams after my brain injuries has changed my life but it also part of my life now…so I had to learn to accept it and learned to live with it and not control my life. I don’t have the family support from my children or siblings…I more distance myself being around people. It is what it is…it happen…I may cannot change the situation of how my brain injuries came about…Just have to try to do my best living with TBI. Every day is a challenge in all I do and say. As the person who caused my brain injury goes on living their lives…and don’t understand why at times I am moody, why I have racing thoughts…I had many comment directly to me that I have a one track mind…I can’t think two things or do two things at one time. As much as I wish I was normal and my brain injuries…I accepted it and trying to move on to live a productive life as best I can. You don’t need to share or answer any questions unless you feel comfortable to answer the people who asked.

Imagine that your mind has all of the capabilities and experience of an adult AND now it operates with the restraint, control, foresight, and calm of a three year old who missed his nap and just ate fifteen chocolate bars. Sometimes that kid is fun and cute and happy. Even able to play well with others. The rest of the time he is at best out of control. And it only goes downhill from there. He is mostly unpredictable and very hard to care for. That is your mind now and he is always there. Some days you don’t participate with the fun. Other days you do. So you laugh and cry more than ever before. And sometimes you are out of control and sometimes you aren’t. And a lot of the time you watch the three year old in utter amazement that this is the situation that you are in. And then the day is over and you try again hahaha.