There are elements of Parkinson's Disease that are rarely discussed. When outsiders think of the disease, their mind often flashes first to the always-lovable Michael J Fox and his great demeanor and positive outlook. Optimistically, we prescribe to his Always Looking Up mentality, but in reality, there is a whispered side of Parkinson's that those in the community live every day.
Parkinson's Disease is the world's second ranking neurological disorder, yet other than the textbook tremor, many people are unfamiliar with the symptoms. It would be a great case study to examine how people who are unaware of the disease can treat a person who has the disease. When we go out as a family, we notice these people. We feel the stares, hear the loss of patience, and see the rolling of the eyes. We can imagine what is whispered. We've heard questions asked if he is drunk. We listen to the obligatory, "I'm sorry" once we disclose the diagnosis to new acquaintances. We are aware of both friends and strangers relief, thankful it's not them.
As parents, we witness our children's response as they look down to the ground, awkwardly wishing the moment would pass. Children are best at observation. They quietly read body language, posture and tone. They understand differences. They are forever processing. They are honest in their assessments and when they relay things back there is often no filter.
Our youngest daughter innocently asked, "Why do they think dads unseen" and in a recent journal entry she wrote: "People tret Dad like hes invisible and think he is werd. Like when people see him they make mad and bad faces"
It pains my heart that at 7 she understands that people glance over her dad, but yet she can't process it. Here's the man who she loves and thinks is amazing, but at the same time, struggles with others recognizing that there is something very different or strange about him. He has had Parkinson's her whole life, and she knows that his disease at times can be limiting and hard. She is innately kind and patient, but each instance questioning why others find this difficult to do. Through her eyes I see the disconnect.
I don't have an answer for her.
I could tell her it's ignorance.
I could tell her they don't know better.
I could tell her she was wrong and excuse away the behavior.
I could tell her they are just having a bad day.
I could tell her it doesn't matter.
But we won't.
It (he) does matter.
Ignorance is not an excuse.
In 2015, regardless of what someones ailment is, they should know better.
She does understand and their behavior is wrong. What she is seeing is real -- insensitive, unkind, inexcusable, thoughtless people are among us. She watches her father fight everyday to do things he once took for granted, from small things such as buttoning a shirt and writing to much larger things like walking, talking and keeping his balance steady. She sees him. He is not invisible. His love is as real as his challenges. He's not "werd" (weird). He's just dad.
It's a shame to say that people's perceptions of us can affect our daily lives; that negativity and neglect could shape our children. Our goal is to make sure our girls never lower their expectations of how they should be treated and vice versa. Circumstance has taught my girls strong lessons, and I am grateful for the virtues that they now hold.
Treat others how you wish to be treated yourself.
No one is irrelevant.