macular degeneration, macular, diagnosis All I Want for Christmas – My Macular Degeneration Journey/Journal

All I Want for Christmas

Another week is over. I cannot believe how time flies! Not much happening here. Since it is the first week of December in real-time, my husband wanted to know what I want for Christmas. The house is bursting at the seams with stuff.

I certainly don’t need stuff. What I want to do is go skiing.

My husband is not sure I can. I don’t get it. It has been 10 months since my second eye went bad and he has been here with me the whole 10 months. I navigate really well but he still thinks I will run into a tree! I really have fallen over things only twice in all that time. Both times it was dark and the contrast was poor. Mid-afternoon, white snow, green tree. I think I will be good.

My friend has sort of been the same way. For weeks she has gotten out of the car and walked me into the Y. I realize it is out of concern but what am I going to do? Run into the side of a car? Cars are pretty big. I think I can see them.

I know they do not have the benefit of being able to see what I see. If they could, I think they would worry less. I believe most people think I am more debilitated than I actually am. They get afraid of my doing things I have done for years.

Some people seem to have a one size fits all notion of disability. If I am visually impaired, I must have every characteristic on the list. There are certain things that by definition I cannot do.

We all know intellectually this is not true. There is a saying in ‘the biz’: when you have seen one autistic child….you have seen one autistic child. The same could be said for AMD oldsters or those suffering from any disability. We are all different and need to be treated as individuals. We even need to be treated differently from situation to situation.

Categorizes and conceptualizations are great – I make my living using them every day – but they are primarily for the convenience of the people doing the categorizing, not for the person being categorized.

And when that categorization puts more limits on me than the condition itself, I get pissed! I hate being told I cannot do something. Especially when there is no real evidence one way or another.

Matters of public safety, of course, are a different story. I cannot be going 65 miles an hour down the road. I am not adequately visually aware. But walking across a parking lot at 3 miles an hour or meandering down the slope? I believe those are still within my realm of capabilities. I just ask for the opportunity to try.

written 12/2/2016

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