(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)
Question: What’s the most difficult word in the English language?
A little background. I lammed it out of Chicago and am now at my dad’s house in Florida. I can’t say that it has helped with the pain too much (i.e. I’m miserable). But if I’m going to be in pain, better it be someplace warm. My uncle is also here visiting. My dad owns a small plot of land that we call “the farm”. It’s on the outside of town and right now, a homeless friend of my dad has kind of homesteaded the place and has created a little camp site (that’s another story entirely). Yesterday my dad and uncle were going to go out and check on things which prompted this conversation:
Dad: “Hey Sal (me), you want to go out to the farm with us?”
Me: “I don’t think so. It’s way too windy for me to be standing in the middle of a field. I’ll just stay here and write.”
Dad: “You sure? It doesn’t look too bad out. And if you’re in pain, we’ll leave right away.”
Which gets me to my point. I think many of us try to be polite and not make waves or seem too harsh. I should’ve just said, “No,” but I didn’t want to be rude, and I felt I had to provide some explanation. And even that was somewhat tempered. What I could’ve said was, “No. Right now I feel as if a giant claw has clamped onto my face like in one of those vending machines at Denny’s where you can win a stuffed animal.”
Wait. Even that’s not right. I should’ve just said, “No.”
For such a small word, “no” seems to be one whose definition is better in theory than in the real world, especially when you have a chronic illness. You, the affected, feel like just saying a simple, “No,” or actually, “No, thank you,” is an insult to the asking party. That party, in this case Dad, thinks that “No, thank you,” actually means, “Well, I might go if you keep giving me reasons why you don’t think it will be a problem.”
And so we dance. Me, restating my concerns over and over again using different words. And Dad, continuing to give me reasons why I shouldn’t be concerned.
Though I know my dad cares about how I’m feeling and doesn’t want me to get worse, he clearly doesn’t understand. He doesn’t understand that even on reasonably good days I am in more pain than I outwardly show. He doesn’t know that when you have TN you are constantly assessing your surroundings for possible pain triggers. He doesn’t realize that having to “prove” why I don’t want to do something makes me feel as if he doesn’t believe me.
And it’s not just my dad, of course. Other people do it too. “Come on! We’re just going out for one drink.” “I know the wind chill is eight hundred degrees below zero, but it will be nice and warm in the theater.” “You don’t even have to dress up. Just throw on some clothes and we’ll go.”
I just want my dad, or anyone really, to accept that when I say “No,’ it’s a well thought out answer, one that I often don’t want to give. I like to do stuff. Go to the farm or the movies or an outdoor art festival. But my saying “No” is an indication that I, more than anyone else, know my limits. But I continue to have hope for those days when I can say, “yes” and worry that my declining invitations will end up in a decline of invitations.
So that brings up a couple more questions.
Do I want people who ask me to do things to keep prodding and cajoling until I say, “Yes”?
Do I want people to stop asking me to do fun things like concerts or shopping or dinner:
You see? It’s kind of complicated.