Me, window gazing in May 2008.
Spoke with my dad briefly on the phone yesterday. I called to say “Happy Anniversary”. It’s been fourteen years since he married my stepmom. The conversation was awkward, as is pretty usual with him these days, but it became laughably dark, too. When I mentioned the trip to Chicago, he cut me off with being tired and not expecting my call and then changing the subject to Thanksgiving. It was rude. It was clumsy. It was way beyond avoidance to all out “Nah, nah, nah, nah, naah! I don’t hear you!”.
Later, Zoe and I spent some time with Jenny, my brother Joe’s wife. I told her about the offputting exchange with my dad. She shared that she has a strong aversion to witnessing people being chronically ill and not being able to help. If someone was lying with their leg hanging off gushing a blood geyser, she would jump in and get all EMT on them. A child with cancer going through chemo? She can’t even stomach an online photo. Perhaps that was part of my father’s problem, she pondered? That my dad cannot, for the life of him, face that I’m actually sick.
Later, as I discussed with her the tests I had done in Chicago, and the procedures I’d have to undertake if I go through the stem cell transplant, Jenny stiffened. Then she blurted out, “If things are better, why do you still walk around like you have a stick up your ass? I mean, you walk like you’re drunk.” I shot her one of my “WTF?” faces.
Now allow me to pause here. Perhaps you’re thinking that was, to use “Clueless” lingo, “Way harsh”. Like, too harsh. And blunt. Well, yeah, I agree. But I want to make clear that is Jenny. She’s an Iraq vet who was raised on a farm and likes hiking, camping and by her own description is not “soft”. So that’s just her.
Plus, as much as it pains me to say it, I know plenty of others are thinking it and don’t have the nerve to say it. I *do* walk funny. I wouldn’t say like I have a stick up my hind regions but I get the drunk part. It’s true term is “foot drop” and it’s because my sense of feeling in my feet is severly diminished. It’s the whole “sensory neuropathy” thing. So yeah, I’m sure others think (and say, out of earshot) some of the same things and wonder why do I go through IVIG and plasmapheresis to only walk around like I threw back a few too many. Um, allow me some sass here when I say, “So I can, you know, WALK.” While in Chicago, I realized how blessed I am through the testing. I get up from chairs without thought and can stand on my tippy toes. Some of the other patients were wheeled in and had oxygen tanks attached to their sides. Neuro diseases are serious, folks.
Anyway, when I got home, I was caught up in the convos I had with Dad and Jenny. I thought of how my Dad refused to hear anything about Chicago and how Jenny, as I actually did talk about it, pretty much threw a grenade on the convo with her questions. I guess I’m like that cancer kid to her. There’s nothing for her to patch or mend. Even worse, I was sitting right next to her. At least with an online photo, she could close out the screen. She did the next best thing. She closed out the discussion.
I kept thinking and thinking. Overthinking really. Thinking how once I get past the sting of being told I regularly carry myself like Britney Spears circa 2007, I simply don’t have the grace or strength to be other people’s character builder. I mean, so my dad *should* learn that he needs to get past his feelings of weakness to be “here” for me. According to every Christian movie ever, this *will* happen as God uses me to refine his character. And stuff. Yeah. Except as I just wrote, I don’t have the fire to help melt away my dad’s fear. I don’t. Nor do I really want to.
I’ve received a number of messages of how brave I am. I feel shocked and honestly, a bit embarassed, when I read them. I’m an introvert by nature, so receiving so much attention is draining for me. I truly appreciate these notes of encouragement, though. I just feel taken aback by the sentiments.
After Jos’ death, I wrote “I fight sins not tragedies”. I felt I had to declare to the world that my sister-and me- aren’t mere cautionary tales. She isn’t some prop to be trotted out as an example of… well, whatever. She was a real, flesh and blood person with good qualities and bad. Not some flat cardboard stand-in for whatever vice or virtue in some lazy latter day morality tale.
Yesterday, I felt trapped. Trapped because I know as much as I loathe being some lesson to my family, friends, or well, you, as you read this, I am. It’s what happens in this world. More importantly though, it’s what God calls us to do; to live and love and commune with each other. As a Christian, it is my duty to allow God to work through me as a tool of refinement, just as others help refine me.
I’ll be honest, though, I don’t have the strength. Thank God for Christ, who does.