A Balancing Act: Ataxia and Living
The dictionary offers many definitions of the word balance. Perhaps the most commonly used description refers to the harmony and equilibrium that occurs through the synchrony of parts working together with equal force. When parts work together there is evenness and a sense of stability; when they dont, there is disequilibrium or loss of balance.
The hereditary ataxias change the way that the area of the brain controlling coordination and balance performs. As a result, these diseases physically disrupt balance. From information in the National Ataxia Foundations Frequently Asked Questions About Hereditary Ataxia, the word ataxia comes from the Greek word ataxis, meaning without order or incoordination (2000). But balance can occur even when order is disrupted, as long as something also acts as a counterbalance.
It is not uncommon that disabled individuals get more stares than the average person, and the stares are often not rooted in kindness. Comments made out of ignorance or callousness still hurt. And even when the stares are not unkind, the scrutiny tends to place more marks in your personal "minus" column than in your "plus". It takes personal time to weed the ugly people from your life, and many are too preoccupied with what has happened to them to be able to do that. It is easier to retreat into the safety of a closed world where no one has to know that something is wrong with you. It may be easier to let others think that your slurred speech and staggering are the result of drugs or alcohol, or it may be easier to justify these indulgences because it hides your handicap. Fear can breed isolation, but detachment creates a loss of self. And suddenly, you truly lose your balance.
You must know and respect your limitations but not allow them to keep you from putting forth your best effort. The choice to accept the freedom to live to the best of your ability is much more powerful than constantly embracing your limitations or others expectations. Yes, there are certain inevitable changes that must be faced. Certain activities may become impossible to do safely, but many other activities can be adapted to an individuals capability. There are always choices to be made, but they need not revolve around expectations. A disability does not define a person. Only the person can do that. Constantly questioning the whys can interfere with the time that can be better used to appreciate those things around you, those things that give you enjoyment, those things that help you to live to the best of your personal ability. One must find what they are capable of what works for them. What works for one person may not work for another without adaptation. Adaptability is the key to balance.
Healing Through Helping Hands
One of the greatest support mechanisms to those affected by hereditary ataxia emerges as a result of the awareness generated through patient health and education services like Genetics of the Acadian People forums. Open to the public and free to all who care to participate, this event presents the latest information in medical research and treatment. It provides access to physicians and other professionals dedicated to increasing educational information and offers break-out sessions designed to answer questions in specific topics areas, ranging from medical ethics issues to diet management. It puts a sharing process into motion. Professionals share their expertise and the latest information with their audience, and audience members share their personal experiences. There is a real sense of family fostered by the amount of caring and sharing that goes on at these events. And the sharing and caring allows healing.
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