One of the first jobs I had right out of college was at a residential treatment center for children. The section of the center that I worked in was called the shelter care unit. We took children, ages 3 to 12, who had been removed from homes with unimaginable situations, or children who had been in multiple foster care placements due to severe behavioral problems.
In any residential treatment center, there are pros and cons in how the assessment process is carried out. All employees in the shelter care area were responsible for tracking behaviors in a variety of ways, all very structured. Each case manager, myself included, had 3 or 4 children that we were specifically assigned to pay special attention to. When a month had passed we had the heavy responsibility of writing a behavioral assessment, which had the potential to impact the child’s life for years to come.
Reading the case files for many of these kids was heart breaking. The damage that was done to some of the children by adults, was indescribable. If I could write here the things that I read there, you would be tempted to say it was fiction, no person could possibly be so cruel to another. When you hear about the “cycle of abuse” it’s not just a term that is knocked around with no purpose. It is the enemy that we were trying to disrupt and break down.
The longer I worked in this setting, the more I realized that the people who had worked there for years, with the exception of one amazing woman, had been warped. They expected complete obedience to all the rules and regulations, and when a child was non-compliant on any level, it was noted in a negative way. It was most often documented as non-acceptance of authority. If this independent thinking was established as a pattern of behavior it was often viewed as pathological non-compliance.
For example, at playtime, a child was expected to pick a task like Legos, or Nintendo and stick to the same thing for twenty minutes. If they didn’t want to pick anything, or were bored with the Legos after five or ten minutes, then they were marked as either non-compliant or as having trouble with attention. Every behavior was documented.
Being a kid fresh out of college, I dared to say out loud one day, that I thought it could be good that a child coming from a situation where they had been beaten down and told they were nothing, or far worse, refused to pick a task, or still had the where withal to tell another adult that they were bored. It seemed “normal” to me that a child would do this. I would have done it.
Judging by the looks on most of the staffs faces you would have thought I had said something like all of the children were birthed by Alice in Wonderland, or something just as absurd.
So what does this have to do with losing vision, or chronic eye disease? It has to do with our view of what is normal. My “normal” is blowing things up on my computer to see them well, or to grab a magnifying glass when things are too small. If I come to the place where I believe that everyone else sees similarly to me, and they don’t, then my perception of reality or “normal” has become warped, just like the well-meaning staff I worked with.
I write about this because I think that is important to be resilient, to remain optimistic about what I can see, but it is equally important to be realistic, to gauge my vision using a standard beyond my small world. If I come to the place where I believe that everyone else sees similarly to me, and they don’t, then my perception of reality or “normal” has become warped. We can’t become like the staff of the residential treatment center who had worked with children under artificial conditions so long, they’d forgotten what real normal children were like. It’s easy to forget what normal vision was like, or what life before this illness was like. But, it’s important that we don’t, or at least try not to.
If we aren’t in tune, at some point, we may have a reality check when someone decides for us that it’s time to take the car keys away or to relieve us of certain responsibilities that we can no longer do well. I don’t know about you, but I would rather make this decision myself, rather than suffer the humiliation of someone doing it for me. I have made the decision not to drive for certain periods of this disease, and under certain conditions, sometimes I currently won’t drive. I have given up tasks that were hard to give up. I don’t view this as quitting. I view it as caring, not being so stubborn trying to be “normal” that someone else has to intervene.
Be a hard worker, live life to it’s fullest, and look at things through clear lenses, and try not to lose sight of normal so that you can have a good standard by which to measure when making sometimes hard decisions. In my opinion, it’s one of the keys to living happily with any chronic illness, including eye disease.
Live happily. Keep sight of normal.