I was blessed with participating in meaningful volunteer opportunities at a young age. It all started with confirmation hours in eighth grade... I went on every trip to the soup kitchen and the Christmas wrapping days, I also signed up to help people with disabilities participate in recreational activities. And so began my first lesson on people first language. Perhaps you have heard of it? It is that whole idea that when you are introducing or talking about a person, you should always address them by name first. So for instance, if I were talking about my favorite TV show, and I wanted to talk about Max and his disability, I would introduce the topic by saying something like: Max, the boy with asperger, NOT: the asberger boy Max. This language has become so common to me, even writing the second statement makes me extremely uncomfortable.
So, I was having a discussion about how people hang flags in front of their houses, or put bumper stickers or messages on the back of their cars. We were discussing the motivation behind such displays, and this is where I tell you we put WAY to much thought into all of this!!! Anyway, this all came up because a truck was driving down the road with the ten commandments written on the back of it's vehicle, and it lead us to a broader discussion of those bumper stickers and flags I mentioned earlier.
It got us talking about how we perceive people we don't know, when the first thing we are introduced to is that one piece of them they put on display. We had differing theories, but this made for a more substantial and meaningful discussion. It also made me delve deeper into my thoughts about disclosing I have MS to people. First I want to say that I haven't made a ton of new friends since I have been diagnosed with MS. As a matter of fact, there is only one notable new person in my life, since I have been diagnosed. I made the conscious decision to not tell this new friend that I have MS right in the beginning. It simply wasn't relevant... And then she saw my shot, after I had known her for several months. This was the point in which I disclosed the fact that I have MS. It was an interesting conversation in which she told me she was going to ask if I had a stroke or something because my eye was droopy and she saw me stumbling. I laughed, we moved on, and we sometime talk about the fact that I have MS, but we primarily don't, because that isn't all I am... Or is it?
I don't care who you are, or what people say... When you are told you have some sort of chronic disease, regardless of the prognosis, there is a period of time when you simply can not live in a world where the people first language makes sense for yourself. What does this mean? Since I have been diagnosed, MS simply comes up first. Why is this? Because I give it that power. I'm not saying this is right, and I'm not saying this is how I want to live in the long term... I'm simply saying that it is!
I have recognized this, and it is precisely why I have my MS free months. I do that so I can reacquaint myself with, well, myself. It is also the time I give the most amazing friend I have known, a break from my meandering about MS. Unfortunately, this month has not been declared MS free, because I had my annual check up, and so it has been the center of my world with her again... Is this fair? Nope, but again, it is...
Anyway, because of all that I mentioned above, my relationships with other people have been tested. The most important people have become even more important, and I think they all know that. The most important relationship in my life, my relationship with myself, has been tested in the most dramatic way, and although I have my daily struggles, I know that at some point I will live in a world in which I can view myself through the lens of people first.
For now, I embrace and love any person who is willing to process through my struggles with MS, so I can get back to that place! Remember that those relationships that challenge you the most are the ones that give you the most reward!
So, I was having a discussion about how people hang flags in front of their houses, or put bumper stickers or messages on the back of their cars. We were discussing the motivation behind such displays, and this is where I tell you we put WAY to much thought into all of this!!! Anyway, this all came up because a truck was driving down the road with the ten commandments written on the back of it's vehicle, and it lead us to a broader discussion of those bumper stickers and flags I mentioned earlier.
It got us talking about how we perceive people we don't know, when the first thing we are introduced to is that one piece of them they put on display. We had differing theories, but this made for a more substantial and meaningful discussion. It also made me delve deeper into my thoughts about disclosing I have MS to people. First I want to say that I haven't made a ton of new friends since I have been diagnosed with MS. As a matter of fact, there is only one notable new person in my life, since I have been diagnosed. I made the conscious decision to not tell this new friend that I have MS right in the beginning. It simply wasn't relevant... And then she saw my shot, after I had known her for several months. This was the point in which I disclosed the fact that I have MS. It was an interesting conversation in which she told me she was going to ask if I had a stroke or something because my eye was droopy and she saw me stumbling. I laughed, we moved on, and we sometime talk about the fact that I have MS, but we primarily don't, because that isn't all I am... Or is it?
I don't care who you are, or what people say... When you are told you have some sort of chronic disease, regardless of the prognosis, there is a period of time when you simply can not live in a world where the people first language makes sense for yourself. What does this mean? Since I have been diagnosed, MS simply comes up first. Why is this? Because I give it that power. I'm not saying this is right, and I'm not saying this is how I want to live in the long term... I'm simply saying that it is!
I have recognized this, and it is precisely why I have my MS free months. I do that so I can reacquaint myself with, well, myself. It is also the time I give the most amazing friend I have known, a break from my meandering about MS. Unfortunately, this month has not been declared MS free, because I had my annual check up, and so it has been the center of my world with her again... Is this fair? Nope, but again, it is...
Anyway, because of all that I mentioned above, my relationships with other people have been tested. The most important people have become even more important, and I think they all know that. The most important relationship in my life, my relationship with myself, has been tested in the most dramatic way, and although I have my daily struggles, I know that at some point I will live in a world in which I can view myself through the lens of people first.
For now, I embrace and love any person who is willing to process through my struggles with MS, so I can get back to that place! Remember that those relationships that challenge you the most are the ones that give you the most reward!
Comments
Post a Comment