Patience

I just reread my last blog post and it got me thinking about how difficult it is to understand the intricacies of a healthy human body, let alone one that isn’t working as it should. A few months after my diagnosis I was talking to a friend about what I had learned about my particular illness. She commented on my proactive response, saying that if it were her she’d crawl into bed and pull the covers over her head. I responded that I had done that until I got bored a few hours later. Everyone is different and each of us must find our own way to respond to tough breaks. For me, gathering information was a way to gain a measure of control over something that felt completely out of my control. Information gathering has a downside though; you might not be ready for some of the information you find. (One also must be careful that the information is accurate, but we’ll leave that for another day.) So if you fall into the category of those who don’t want to find out every little thing (or every little potential thing) about what is happening to you, it makes it really difficult to understand it for yourself, let alone explain it to other people. Add on to that the fact that there is a whole lot that isn’t known about various illnesses and the way those illnesses affect us, well, let’s just say that there are a lot of opportunities for misunderstanding. It ain’t easy to walk in somebody else’s shoes. (I’d encourage you to give it a shot anyway, what have you got to lose?)

Another challenge is that sometimes I don’t want to have to explain to people; explaining can feel like I have to justify what I’m experiencing. Sometimes I want to say something along the lines of, look, if I tell you that I can’t do something, please just trust me that I’m telling you the truth. And it might be that at any particular moment, I just don’t feel like talking about it; it’s not terribly fun dwelling in that place all the time. Not too long ago I came up with a shortcut – IRI, or “illness related incident” – if I say IRI, please don’t ask me to explain, just trust me that I’m having a hard time and bear with me.

I want to say one other thing – just as I’d like you to walk in my shoes, I do try to walk in yours. I know it is difficult for other people to get what is going on with me; it’s tough for anyone to understand what someone else’s experience is like for them. And we live in a busy culture; it’s not often that we stop and take the time to even try to understand. That makes it even more important that we do try.

Vox Pop, my much mentioned local coffee shop has a lot of regulars. One of them is a man who lives at a local assisted living facility. Not long after Debi, the woman who runs the place, and a good friend, started working there he would come by and ask for various things; sometimes a few coins (he likes to round his change up to a dollar, makes sense to me), sometimes to check the lost and found, sometimes for a pastry from the day old bin. When I first met him it was very nearly impossible to understand his speech, at some point in his past he suffered a significant brain injury. As busy as she was, and still is, Debi always takes time to stop and listen hard when he tries to communicate. All of us who know him are amazed at how different he is now, almost a year later. The change really is quite remarkable. Not too long ago, I was at Vox Pop, sitting outside when he came by for one of his visits of the day. He never speaks to me first, I have to acknowledge him before he’ll say anything to me (that makes sense too). So I did, as I always do and this time, instead of a nod mid-stride he came over to where I was sitting and said something that I couldn’t understand. I asked him to repeat his question (I figured out that much at least), which he did. I apologized that I again couldn’t figure out what he was saying and asked him to try one more time and I promised that I would try really hard this time to get it. I did – he was asking me to tell him my name. Well, duh, I realized that in all of this time I hadn’t ever introduced myself. So I told him my name and a bit later watching him leave I hollered out my goodbye. Not slowing his stride at all, he looked over his shoulder and in a completely clear and articulate voice said, “Goodbye Angela.”

A mighty fine reward for a bit of patience.