One of the hardest things with Dystonia is trying to know when you can go out with the family and do something, go somewhere or for how long. I know for most people if they want to go to get something or go somewhere they can hop in the car and go without a second thought, but for me that is not the case. We have to look at the weather forecast to see if there are going to be any storms we have to know how much noise will be there what kind of acoustics will the room be in, and for some reason when we ask these questions some get offended and tell us that if we do not want to come then don't, but we are not trying to find an excuse not to come we are trying to find out if it is a possibility. Sometimes it is and sometimes it is not, and sometimes we do not know so we give it a try.
for example I had a good week a couple weeks back and my wife had some things to do so we decided that I would go, and we always know the risk of my having a storm in the car, or not being able to walk through a store or many other variables. We went to a Local Ihop and thought we would eat something, which we can rarely do anyway, and I started to twitch a little and my eyes would roll into the back of my head, but through this we stayed because we wanted to have time together, and my wife is not embarrassed at all by what might happen, because that is our normal, but I began to notice grown adults just staring at our table. I do not mind a glimpse, because if you see what was going on you would have looked as well, but to have the whole Ihop stop and stare is a little rude, I think anyway, and everyone was doing it. They could not take there eyes off of me. I do not mind if this happens, but it makes my wife upset because she sees this as our normal.
That is just one example this has happened many times to me and as grown adults people should have learned that everyone is different what one person considers normal may not be another persons normal, but to stare and gawk I thought we left that back in high school, but I guess not. My point is God made everyone different and just because someone is different in a way that can't be helped they should not be made to feel uncomfortable in whatever sitting they find themselves, And as we were walking out and my wife was helping me because I was having trouble walking, not one person offered to help my wife, and anywhere we have gone that I have had a storm or a trouble walking not one person has offered to help my wife, besides our family and church family. Why is it this way?
As you go through your day there may be people you meet that are different, but do not stare, and if you see that they need help lend a hand! because if we do not help who will? can we not take our eyes off of ourselves long enough to help someone else? even people we say we love. We will see them going through a rough time, but we will pray that God would send someone to help, when we ourselves might be that person, because if not you than who? Don't point a finger Lend a hand a song written by Rodney Griffin of Greater Vision, because he saw the same thing. Many people will send thoughts, but few will act.
So next time you see an opportunity where you can help instead off stare try it it may just make someones day to know that there is someone out there who cared enough to help. You never know what someone else is going through.
The struggle is real for Dystonia patients because believe when I tell you that I get stared at, pointed at, and laughed at during my storms that I have in stores, and I expect that from little children, but not grown adults, and to be truthful that is why I do not go many places with my wife because I do not want her to have to see it and get upset, and I am sure that anyone who is different from the normal person feels the same. they would rather stay at home than see the awkward stares and giggles from other people. It is easier to stay home. So do not be a gazer be a helper!