Advocacy For Care:
Advocacy for life:
We all understand what is meant by quality of life. It embodies the concepts of self-actualization, fulfillment and individual happiness, or at least, the ability to pursue these goals.
Advocacy for life is the struggle to provide an environment in which both long-term caregivers and brain injured individuals enjoy a quality of life which provides them with the greatest opportunity to achieve the maximum functionality possible.
In order to achieve this goal, it is important to become involved in the brain injury community.
How does one become involved?
Brain Injury can be a very isolating event in a person's or family's life. But you are not alone. The brain injury community is a very large and growing part of our population. Only through involvement can advances be made to address the challenges of brain injury and to minimize the devastating effects brain injury has on so many lives. There is no "cure" for brain injury, but we can battle it through prevention education ( for example; promoting the use of bicycle helmets).
You may feel overwhelmed by the life you lead; the responsibilities and decisions, and feel you don't have the energy to contribute. Believe me, we've all been there. However, for most of us, involvement has been the best therapy. The brain injury community is a very close community which includes people from all walks of life. It is not only dedicated to advocacy but to assuring that no member be without meaningful support.
You need to know what you are entitled to, what your rights are, and whether or not your treaters are doing what is best for you. One of the ways you can assure the best treatment is by talking to other survivors. They have insight into medications commonly prescribed, which professionals have the greatest understanding of brain injury, and coping methods which only a survivor may understand the need for.
A personal note:
During the critical phase of brain injury, you will be surrounded by professionals, friends, and other families coping with the same issues which you are facing. Everyone understands the emotional turmoil in your life and how all encompassing the tragedy may be.
As time passes, support fades. You may not be dealing with the medical establishment on a regular basis, and if you are, the experience may be a little frustrating. Friends return to their normal lives, and even family members may not understand why you, the caregiver, or you, the survivor, cannot simply "Get on with it".
There is life after brain injury, but brain injury is forever. Your life may not change drastically, but it will change. Sometimes the effects of "mild brain injury" cause more long range problems than a "severe brain injury", which is why we prefer the use of the term "brain injury" to describe all types of injury. If the survivor cannot return to the level of functioning he/she had before the event, then the effects of the brain injury are devastating, whatever the level of severity.
Don't be afraid to educate those around you. Did you understand brain injury before it touched your life personally? Most people are willing to learn or at least make an attempt at understanding. Many professionals in the medical field are not experts in brain injury or its long term effects. If your doctors are not familiar with brain injury, educate them. If they are unwilling to learn, find doctors who are.
Don't be afraid to reach out for help. There is a substantial body of information on the internet, and a great deal of support and wisdom. And when all else fails, learn to laugh a little; where there is laughter there is hope.
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