“Can I ask you a question?” For most people this is an innocent question. For someone with a physical disability, this usually makes us hold our breath and wait for what we know will be asked. “What’s wrong with you?” “What happened to your ….?” “Why do you …?” “Do you have … ?”
I was born with Sacral-a-Genesis (SA) which is a neural tube defect that basically means I don’t have a complete spine. Because I don’t have a complete spine, I don’t have completely formed hips, and also have bladder and kidney problems as well. All in all, my birth defect is on the mild side as I am able to walk, though I do have a nasty limp. Many with SA are wheel-chair bound and suffer constant back pressure and pain.
Growing up, I hated that question. You see, it was a reminder that I am broken. A reminder that as “normal” as I might feel – I am not normal. If you look at today’s church you usually don’t see many people like me. Yes, there are the elderly for whom the blessing of long life has included degeneration of their bodies. Yes, there are the few who suffered an accident. But those of us born with a physical disability are few and far between.
Why? Looking back at my life, I think there are two reasons. First, our abortion culture – no explanation needed. Second, our church’s misunderstanding of how to interact with people who have such “issues.”
Brokenness makes people awkward. They either say too much or too little. Usually those who say too much also say the wrong thing. “Don’t be embarrassed!” “God doesn’t make mistakes!” “You’re perfect just the way you are!” “May I pray for your healing?” These are all well-intended comments, but if I’m honest with you, they don’t help. Then there are the comments one is not meant to hear. The rumors of what happened to you from people too afraid to ask. The church worker who comments sympathetically about how sweet it is to see you try to do something because it must be so hard for you. The discouragement from the mother of a potential boyfriend about pursuing you because you might have children who aren’t perfect. Words said out of awkwardness, ignorance, or an attempt to comfort that simply hurt. This doesn’t even touch those who say too little. Those who ignore you because your brokenness is simply too much.
Reconciling the goodness of God and the brokenness of my body has been a complicated journey.
For a long time in my life the Lord gave me the gift of “oblivion” – I simply denied there was anything wrong with me and therefore didn’t talk about it. I would get offended if/when anyone asked me about why I walk the way I do.
For 22 years of my life I lived in this “oblivion.” In that time, I was the picture perfect girl at church. There every time the door opened, avoiding the no-no’s (sex, alcohol, and dancing – haha), willing to pray aloud, eager to serve, good at school, and completely lost in my sin; swallowed up by pride in my ability to do good. I may have a broken body, but I was determined to be perfect in every other way.
When I was 22 the Lord was kind to remove me from this state. Through the testimony and counsel of others, prayer, and bible study I finally began to understand that God is good, regardless of the state of my physical being. In fact, my physical being screams God’s goodness. The fact that I can walk though I am missing a large section of my spine is crazy. The fact that I only have a limp despite both of my hip sockets being malformed and basically perpetually dislocated is mind-blowing. The fact that I do all this relatively pain-free is a marvel medically. I also realized that my broken body was really the smallest problem I had – my broken soul, full of sin, was a terminal disease.
Now at age 34, I wish I could tell you that during these past 12 years as a follower of Christ the Lord miraculously healed my broken body – no more SA! But that would be a lie. It’s still there, annoying as ever. But so is the Lord’s grace.
If you have a story you would be willing to share, I would venture to guess that we could benefit from it. Please contact me via the “contact tab” above.
Melissa, thanks for the reminder. Your vulnerability shows. Most of us work pretty hard at disguising ours. You’ve reminded me that taking off that mask is the only real way to connect with others.
Melissa, I love your perspective about condition of your soul being worse than that of your body. You have a wonderful way of sharing openly about not only your physical condition but your spiritual condition & I’m sure that you & I could be good friends!!
Oh, and thanks for the tips on what (not) to say! Sometimes it’s hard to believe people would be as insensitive as they are & then I find myself sticking my foot in my mouth too! Not so long ago I made a friend & coworker upset when her mother had passed & because she had told me she was a “daddy’s girl” I made a stupid statement about her not being as close to her mother as her father! I think it’s just that I didn’t know what to say & that’s what came out!
The reason I think we could be good friends is that you seem to have an endearing way of helping people to not only understand your perspective but to put them at ease enough so they don’t have to blurt out the completely wrong thing to say!
Thank you, Kate, for sharing this. You are another one that puts people at ease b/c of your loving acceptance!