For The First Time

Have you ever had the experience where you come across something time and time again, but never really notice it? Maybe it is the house that you have passed by on your way to work day after day looking at it each morning until one morning you really see it, and think, "I have never really noticed that house before. How could I not have seen it before this?".

That experience happened to me yesterday. Except that it wasn't about a house. It was about a disabled woman....

Elizabeth and I happened to stop in at Giant Eagle (a local grocery store) to pick up a few items. On our way into the store we passed by a woman getting a wheelchair out of her car. I thought nothing of it because, to be quite honest, I never really think anything about people in wheelchairs except maybe, "Oh, look - there is a person in a wheelchair. I really hope one of my children doesn't say anything too embarrassing." (Let me get real here for a minute - by "children" what I really mean is I hope that Elizabeth doesn't say anything too embarrassing.) Then I will usually go on about my day never giving that person a second thought.

This time though, we bumped into the woman and her caregiver in the produce section, and for the first time I really saw what it mean to be handicapped in this country. My thoughts immediately went to Sarah. The woman in the wheelchair had a caregiver for her not because she was mentally incapable of shopping for herself, but because, like anyone who is wheelchair bound or maybe even dealing with dwarfism, the stores shelving did not accommodate her. This woman will never be able to reach the lemons on the second shelf in the produce isle or the milk on the top shelf in the dairy isle. She will never, without assistance of another human being, be able to reach her favorite brand of spaghetti. How crappy is that, that this woman - a fully competent woman by any other measure -will always need someone to go with her to any store or any other number of places because the able bodied world doesn't think about people such as her when creating the layout of a store. Again, I thought of Sarah.

My thoughts played out what her future might be like not only as a potentially blind person, but also as a potentially paralyzed person - which is very much a possibility for her as well given the nature of NMO. That woman has not left my thoughts for more than a few hours since I encountered her yesterday because I so very much saw my daugther's future in looking at this woman. Up until recently, I had no reason to relate to someone with her circumstances. I am surrounded by able bodied friends, family, acquaintances, and do not know of anyone who is not so. In seeing her, that woman I will never know by name, I saw Sarah. I got a glimpse of all of the things that she will not be able to do if this disease gets the best of her. Not only will she have to struggle with her own symptoms of this terrible debilitating disease, but she will also have to learn to navigate in a world that does not have any desire to allow her some dignity such as being able to shop on her own.

I think that the biggest heartbreak in all of this for me is that I knew that she would need to learn to do some things differently in her life to be able to function "normally". I just didn't realize just how many things she will need to learn to do differently that I, and all able bodied people,  take for granted every single day.