So many of you reading this are affected in some way by dystonia. Many of you have dystonia and there are so many others of you that are reading this that do not have dystonia, but love and care greatly for someone who has dystonia.
There is no question that dystonia creates in most affected persons a disability that prevents them from living live in a 'normal' way. This 'normal' by our society includes walking without assistance, climbing stairs with ease, eating or using your upper extremities without rapid and involuntary movement, as well as speaking clearly and with distinction. These 'normalcies' are often times handicapped when dystonia enters the picture of the affected. These 'simple tasks' are then met with difficulty, or even impossibility. Every day life is completely altered to fit into the 'mold' of what each individuals' dystonia looks like and affects. A new life enters the picture and adjustments are made accordingly. The 'dystonic world' has taken on a new member.
What, though, about the family members? To live with, love, support, care for, and be involved in the life of someone who has dystonia is to take on the disorder as your own, in a way. Your restaurant choices are affected by handicap accessibility. Your movie going experience is limited to an almost empty theatre so that they can have the freedom to get up and walk around when their spasms begin or a miserable front row experience because they can't climb the stairs to the 'ideal' middle row. Your grocery store trip takes twice as long because you are respectful of the fact that their head won't turn to both sides, and therefore you must walk up and down each aisle twice to see both sides. Your phone conversations are no more as their voice just won't work and so your out of town trips are supplemented by texting and skype/Facetime when it is available.
(*This post is by no means to take away from or undermine the severity and reality of the dystonic individual but to open those who don't understand's eyes to a perspective that is so often missed and discredited.*)
The individual who loves another with dystonia is all of a sudden stricken by a 'disability' that they never expected. Disability holds a different viewpoint from the wife who finds herself checking the handicap accessibility of a new restaurant she visited with a friend and realizes that she can't ever go on a date to this great 'new find.' The best friend finds himself finding a new hobby because golf is no longer a sport they can play on vacation anymore. The grandchild never knows what it is like to get a voicemail from his favorite "Gram" on his birthday while he is in school, or what it is like for his "Pap" to travel to watch him play in his t-ball game.
Disability affects everyone involved and those who think it only affects the disabled, is poorly mistaken. Take the time to recognize that disability is a 'status' that is taken on by more than the individual who is affected by dystonia and other disabling disorders. "Disability" is all inclusive.