What is it about Americans that makes the present and being in that present moment absolutely unbearable such that people only want to talk about either the past or the future to get out of the now? It is always amazing to me around meals. Many people cannot stay present with the food they are eating. A friend pointed this out to me many years ago when we went out with a couple of food writers. The talk immediately turned to other restaurants and meals instead of being able to savor the fantastic food and drink we were enjoying in the moment.
But what started this post is that I am tired of getting long winded pep talks about the future if I am honest with someone about what is happening with my brain in the present. Being honest and open about a difficulty does not mean I am complaining or feeling hopeless or anything else. It means this is what is happening now. That is all.
Way too many times when I speak to people and discuss my deficits regarding memory, organizing and planning….the common response is, “that happens to me all the time and I don’t have a brain injury”. So where does it leave me…more isolated, feeling more misunderstood than ever. I guess it’s human nature for people to want to make you feel better, by minimizing the deficits that a person struggles with, but it’s like someone telling someone who just lost an arm…”don’t worry you have one left” 🙂 G. on TBISN
** All the quotes in this article are from members of the Traumatic Brain Injury Survivors Network (TBISN).
The majority of the time I am fairly sure that the response comes out of the persons own discomfort with reality and feelings, or it comes from an upbringing that says it is impolite to discuss anything that isn’t charming and delightful – unless of course it is gossip. But gossip is about someone else so it is not uncomfortable. However the same information given by a person about themselves is what a listener can’t handle. Why is it that we can talk about someone but not listen to someone? What is it about our culture that makes people so very uncomfortable with a person saying truthfully what is going on for them?
I’ve been quiet for the last month contemplating life, working at rehab and trying to accept that I really may not ever be the same. This is scary stuff and trying to grasp everything in a comprehensive way has taken a toll not only on me but also on those who love me as well. I have internalized this and I am unable to find an answer. I really do feel alone. Trapped in a body that once did some very complex tasks but now can’t remember to get a light bulb even though I have sticky notes everywhere reminding me to do so. — TK on TBISN
People in the rehab field are very present with patients. Yes, they will give encouragement for the future; a sort of reassurance that things can improve overtime. They will comment on gains and progress. But they do not negate what the person is currently dealing with. That honoring of reality is one of the biggest reasons why the rehab department is a place of sanity for a TBI survivor; sadly sometimes the only place of sanity.
Do you ever find yourself wondering if your brain will ever, EVER get it together?? It’s like being stuck on the Tilt-a-Whirl at the carnival. Just when I think I’ve got something figured out, or have learned to cope with yet another “interesting challenge” that carny cranks the ride up again and off we go, into the wild TBI yonder… The view is unusual, to say the least, and the experiences can be startling. Even after 30+ years, I still struggle with things that others (non-TBI) find easy. But at least I am alive and able to keep up the good fight. I may not be able to get off that darn Tilt-a Whirl, but I know I’m not the only one stuck on the ride. Popcorn, anyone? — KZ on TBISN
The majority of people with Traumatic Brain Injuries stumble through life on a double edge sword. While those of us who have no obvious signs of disability such as speech or movement impediments are usually quite thankful, the very “normalness” of our appearance can be the biggest bane.
It’s hard when people look at you and you Look normal, but they have no idea of the physical and mental stresses you deal with daily. I can’t remember someone’s name the first time I meet them, or meeting them for that matter. I’ve introduced myself to a few of my boyfriend’s friends multiple times. — TD on TBISN
I now look ok and talk ok but oh do i wish sometimes i have “brain injury” tattooed on my forehead as people expect too much of me and don’t understand the things that are going on in me that they CANNOT see. — LL on TBISN
My encouragement to anyone who does not have a TBI or any other difficulty? Stop, pause, and question yourself the next time you want to offer encouraging words. Did you actually hear what the person shared? Did they complain or did they explain?
Explaining is asking you to hear them. Explaining is asking to be understood.
Many people like myself, who can walk, talk, socialize etc…. are looked upon as though they can do anything. So many times I would walk into stores and ask someone where something was…. then get a look…because I’d stand there for a while, because I forgot what it was I had asked to find. If I was in a wheelchair and had a serious speech issue, it would be obvious. I am so lucky that I have my body relatively intact, although sometimes, it in itself, can get you the looks from people that your spaced out…maybe drunk or whacked out on something. So please remember that many of those issues a person deals with are invisible to you, and when a person asks for help, do what you can. G on TBISN
What is going on inside of your own heart, mind and body in response – or in reaction – to what the other person just said? What is making you feel you need to give them a pep talk or minimize the issue?
Here is a worthwhile thought; “Intelligent people know the answer; the really intelligent people know where to find the answer; the most intelligent people know when and which questions to ask but above all the supremely intelligent people will know when to say nothing!” R on TBISN – (I don’t know who he was quoting.)
