I’ve been listening to the Penny and Sparrow album Struggle Pretty on repeat through this week. It took me a while to catch the Luke 15 allusions. Open the playlist and listen for yourself. Every song can be interpreted through one of the three characters in the parable of the prodigal son.
My love for the song “Fantine” is only amplified by this. The song that comes before it on the album is “Honest Wage” which ends with the lines, “But you’re not always fair to me, no, like I wish you would be…He’s the one who left home I’m the one who stayed./I just get so angry when/You say you love him so,/I wanna be more like him/I wanna know there’s hope.” Boy, do I feel that deeply. But also I feel the “Fantine” line “Until the day I know I’m no better alone/I guess this is just what it takes.”
I’ve got a lot of struggles, and while they don’t feel pretty to me, I take great comfort in the line from “To Haunt, To Startle” as I listen to my heavenly Father “When you hear nothing…/And you feel less…/Your struggle is pretty,/Sit still, and know that I know what is best./You will: Hear me start screaming,/You’ll know: Me by my voice.” Listen to me carefully, my struggle is not a punishment. My disability is not punitive. God isn’t waiting to heal me until I learn some lesson about suffering.
But I have a possible pressure sore developing on the pad of my foot. It’s the exact same place that turned into an ulcer a year ago. I’ve had to stop walking on it and am watching closely to take care of my body. It’s taking a toll on my heart.
I had a really good conversation about it with Brandi on the way home from physio last week. Anja looked at my foot and offered some care suggestions before treating the leg muscles that have been reacting all week possibly in response to pain my brain can’t feel because of the neuropathy. Nerve damage sucks, y’all. I wish that I could always be posting about huge gains in my physical progress, but the beauty of real life involves the mess of nerve damage. My body is unpredictable in a lot of ways because of my disability, but I’m working hard not to let that hold me back.
I listened to a parent on Thursday saying, “I wish you could have seen my daughter before this medical condition reduced her capacity,” and it took a lot of self restraint not to step in and clarify that’s super demeaning to the capacity and ability she currently has. My heart hurt at the comment because I spent years trying to defend my current ability by justifying how much more I used to be able to do before my accident. Right now I can still do a lot. I don’t want to live haunted by what I lost in my accident. I want to live in celebration of the poetry I wrote this past year, the textbook I wrote that’s officially been approved for use at BFA, the students who asked to come over for dinner, the alumni who texted to set up a call to talk about cool kids and writing, the other alumni who stopped by yesterday for safety and schnitzel.
There’s still a tension that I’m learning to articulate – that’s what Brandi and I processed this past week. You see, the potential ulcer sucks. The series of emails and calls I’ll have to go through to get my new braces and shoes approved sucks. The extra appointments in a second language suck. The leg spasms suck. The painful cramping sucks. The inability to walk or function fully below the belly button sucks.
But my life doesn’t suck. See two paragraphs above. See seven, going on eight years of blog posts about recovery and successes. The poem a couple weeks ago was a cry to sit in the tension of the faithfulness and fatigue. I had one friend respond that he thought I was sad; I thought I was being honest. Brandi has adjacent experiences to disability, and I lamented to her the difficulty I have explaining to others how I’m not sad when I’m honest about my struggles. I know my struggle is pretty if I’m pointing to Jesus. But I also know a lot of people feel uncomfortable with how I live out my joy in the Lord while sitting in a wheelchair in various levels of physical discomfort. I won’t lie about the limits I’m facing and the reality of my struggle. I’ve hidden a lot of it because of my embarrassment or insecurity in sharing openly how hard some things are while I have no insecurity about God’s goodness. I could throw up my hands and move into a cave, but whatever it means to be made in the image of God, it has to do with relationship, so I’m sticking it out, growing in my ability to communicate with others.
Hear my heart, my literal heart, for myself, my students, and each of you readers.
Let’s remember also the hope we have of a loving Father who wants us right where we are at.
God is love. God loves me. I also have a sucky disability that presents many more limitations in my life than in the lives of the majority of able bodied people. There’s a lot that’s difficult to make sense of between those two statements, but my security in God’s character is unwavering. I don’t doubt God’s love. I doubt a lot of other things about how people treat me and how I’m supposed to live in this world, but I don’t doubt God’s love for me.
This isn’t a sad post. This is a complex celebration of God’s goodness in light of the current reality of my physical limitations.
