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WHAT FOTHI MEMBERS WANT OTHERS TO KNOW ABOUT BRAIN INJURY.
- WE
would like to be treated with dignity and respect. Sometimes we MAY
or MAY NOT know that we have problems. Others might think that we are being difficult, but we
HOPE THEY WILL BE PATIENT. We are trying to do our best with the skills
that we have left. It must be realized that SINCE our injury, many life situations are hard for us to handle.
Treat us as you would want to be treated yourself. None of us are
intentionally trying to be difficult but sometimes we need a great deal of understanding.
Sometimes “our way” is the only way we can do things. Even though
there may be a correct way or better way of doing something, according to others, IF IT WORKS FOR US
THEN LET US DO IT OUR WAY. We prefer that others do not try to humor us by giving advice
or telling us the “right way” of doing things.
We are not stupid. We do not wish to be treated as if we were misfits.
Most of us have our intelligence intact from before our injury. We merely want the chance to use our
intelligence in ways that are useful to us.
If we are not going to get better right away, next week, next month or
next year, do not give us false hope by telling us that we will recover our old selves soon. Any
inappropriate behavior or response is often due to the injury. This unsuitable behavior is frequently
misinterpreted by some people.
We prefer honesty. If we ask questions that cannot be answered, tell us
that you do not know. It is far better dealing with reality than unreachable expectations.
It takes so much of our time and energy LIVING the life of an
ABI(acquired brain injury survivor). Brain injury is not a thing that we can turn on and off like a light
switch. This is a very real and terrible way we have to live………...it takes a lot of courage.
People who give us encouragement are a very important part of our
lives. Do not take away our to try over and over again to perform a task. It may take us months or years
to remember to, say, shut off the stove for example….but do let us at least try and eventually
we might do it.
If we learn with honesty who we are today, we hope others who are close
to us will also learn to accept us. We can’t be the someone we used to be. Rather, we are someone
who must do things in a simpler way. Worth with us on this. Be honest with yourself and us.
ALLOW us to WORK with the faculties we have left.
Instead of telling us what we need, ask us what we need and then
listen to what we say. If our needs are taken seriously then we will start feeling useful and more positive
about ourselves
Don’t say: “Oh, I can’t remember things either."
or "I forget my keys all the time.” or
The biggest difference between others and brain injury survivors is that
others do these things once in a while with thought and recall. WE DO
IT REPEATEDLY WITH NO RECALL. For those of us with short term memory loss as a result of an ABI, the
preceding is an everyday occurrence. It happens every minute of our lives,
every day of our existence. Many of us function with robotic motions. We do
things as we perceive we used to before our injury, with no thought or
recollection of the exact activities. Much as someone cannot grow back an amputated limb, so it is for (ABIS) acquired
brain injury survivors who have memory loss. We may eventually learn coping
skills, but once a part of the brain has lost function, then that section cannot
grow back. So be aware to whom you are speaking when you say the words, “OH I DO
THAT TOO.” In general, most people have no idea of just how difficult life is without
the ability to instantly recall events. We rely automatically on our knowledge and expertise from before
our injury. Usually skills that we learned before our injury are still in our brain.
The word NORMAL has a different meaning for ABIS’S (acquired brain
injured survivors). Survivors Need to use life skills that work for brain injured survivors. So its hard to
say what is NORMAL.
WE do not know. If we did, we would NOT be having the problems that we
experience every day.
Empower us to explore our strengths that give our life meaning…..things
that keep us going. Aid us in finding things to dream about, things that
energize us, and things that give us independence. We need help finding things
that work for us and motivate us.
Instead of telling us what we need, ask us what we need, and listen
to what we say. If our needs are taken seriously, then we will start feeling
useful and competent.
IF we are not able to remember how to make e.g. coffee correctly, give
us many chances to learn.
Don't take the chance to try away from us. It may be considered risky, by
some, to allow us to e.g. make the coffee…. WE may forget to put in the filter and there will be grounds in the
coffee…..SO WHAT! The coffee can Be thrown away and another pot made. OR we may forget to turn the coffee on,
wait a very long time and wonder why the coffee is not ready. OR we may think
that we made a pot of coffee, get distracted and forget that we were even making
coffee. OR we may offer to get someone a cup of coffee and forget all about
getting the coffee for that person. Just continue to be patient with us and one day we just might learn how to do
that particular task correctly.
When the public works with us and assists abis (acquired brain
injured survivors) to do our best, then we can hope to fit into society better and more quickly.
Give us the consideration that you would expect for yourself. IF
your life was totally turned upside down and you were powerless to get your life back as you once knew it….just
how do you think YOU
would manage? Many of our old friends leave us because they do not know hoe to deal with
who we have become. WE do not know who we have become. What lies ahead of
us is very frightening for us.
Loneliness is a big problem for us. Brain injury often scares everyone
away leaving us very much alone. Far too often we are forgotten and
excluded from many activities because of our disability. It would be great if ABI (acquired brain injury) was understood by
society. IF this came to pass, the admission of having a brain injury would not scare people away and perhaps
loneliness would not be such a big issue for us. .
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