I have never liked the unexpected. I don't like surprise parties, I am not spontaneous, I hate when my plans get changed at the last minute. I am not…entirely rigid, but yeah, I like to know what's what and when and why and no, I really don't much like flying by the seat of my pants.
It means that I'm virtually unbearable right now.
I know that it's normal.
Last week, I read an e-book by a woman who has RP. In her book, Believing is Seeing, Laura Lawson describes the grief of this diagnosis - and it was almost a relief to see some of the feelings that have been bouncing around in my head expressed by someone else - a relief to have a shred of normalcy, that oh, feeling this way is probably a totally legit way to feel in this situation. (Note: Laura's blog is here. I'm so glad my friend told me about her and pointed me towards her blog - because a) what are the odds that a friend of mine knows two people with RP? and b) I'm a little less scared when I see all that she's doing - reassuring to know that I might be able to hang on to my camera, you know?)
We don't need permission to feel the way that we feel but when you're dealing with something unfamiliar, it's kind of a relief somehow to know that the set of emotions somehow does match the circumstances. The emotionally evolved side of me knows that whatever set of emotions I should happen to feel would also match my circumstances - because our feelings are our feelings and blah blah blah - you feel what you feel. But my gosh, sometimes I am sad and angry almost in the same breath and what do you even do with that?
In short: You go on.
I go on.
On the toughest days, I know that I must radiate some kind of force field of emotion that repels those I encounter. I don't know that there's a "right thing" to say to me, but I have found a thousand wrong things.
I am not easy these days. And I want to be. I want to be the strong person some people think that I am, but the reality is that the same person who hate surprise parties and hates not having a plan really hates this knowledge that my retinas are dying and are going to continue to die and what do you even do with that knowledge if you think about it too hard?
I admit, I have always been a bit of a pain.
"You're the worst kind; you're high maintenance but you think you're low maintenance."
"I don't see that."
"You don't see that? Waiter, I'll begin with a house salad, but I don't want the regular dressing. I'll have the balsamic vinegar and oil, but on the side. And then the salmon with the mustard sauce, but I want the mustard sauce on the side. 'On the side' is a very big thing for you."
"Well, I just want it the way I want it."
"I know: high maintenance."
But these days? I'm probably a lottle bit worse. And I'm sorry. But. Forgive me? I'm hoping that time will give me a bit more of the strength I need.
*Lottle - More than a little, less than a lot