Beautiful Fear, Bearable Pain

I was 16 the last time I witnessed to a nurse in the operation room.

It was 4:30 in the morning and right before he put me to sleep for my third and final brain surgery, he asked me if I was scared. Apparently, when I answered that I “couldn’t be,” that was enough to delay the surgery for a few minutes while I explained the power of Jesus. I don’t remember what I said. I don’t remember how he responded to the Gospel truth.

I just remember realizing my pain was a beautiful gateway to Hope. I had to come to grips with the fact that the sleepless nights, tears and unknowns were being woven together not so I could benefit, but so that I could be available for someone who I’d never see again. 

Three days ago, I went in for what was basically a low-end emergency surgery. The implanted technology that manages my epilepsy treatment was as dead as a doornail. The medical team could either replace it now, or I would go without treatment for up to three months due to scheduling complications.

I’m not usually a skittish person when it comes to surgeries. I’m skittish about other things like love, careers and the idea of motherhood, but emergency surgery? Meh. It happens all the time. I’ll be fine. Only this time, my fiancé and I had 12 hours to process the news of the surgery, let everyone know, fill out the paperwork and get to the hospital on time. We didn’t have time to breathe, think, or process.

This was also the first time I was leaning on my abundently-capable future husband for something completely out of my control. I trust him, but can I have a girly honest moment here? No one wants to have a memory of looking at their fiancé and saying, “You’re my primary emergency contact. No big deal. Nothing’s going to happen, it’s just paperwork… but, um, since you’re basically my spouse, you, um… I love you?” (It’s especially awkward when you’re making these statements at 5:30 in the morning.)

Three days ago, fear was incredibly present. 

When the lead technician came to investigate my implant, she acknowledged my tattoos, trying to get me to relax. Somehow, we went from talking about ink to talking about how she wants a tattoo that will remind her not to waste her life. “I’m just sick of wasting everything, ya know?” 

She was a genius medical technician, and she felt as if her life was worthless. Immediately, my fear left me as I reached for my fiancé’s hand. My life wasn’t wasted. My life wasn’t pointless. I was facing unknowns, but my pain had led both he and I into that room that very early morning for a reason.

We were given a very real moment to silently pray for a woman who felt invisible. That gave me hope. My pain has never been more beautiful.  

My Battle With Shame & Jesus

There’s unspeakable shame in being disabled. No one would ever say that, but every disabled person struggles with not believing the lie. (My dear friends, it is in fact, a lie.) Every time their body leads them to a hospital, sleepless nights, scary conversations, backing out of responsibilities, or even merely asking a friend to help in an otherwise simple task, their tears can be summed up in one word:

Shame.

It’s hard to understand the shame; as it should be. When loved ones whisper to their disabled family member, “You did nothing wrong,” all that’s said in return is, “I’m sorry, I’m so, so sorry.” Sorry for inconveniencing, sorry for causing worry, sorry for being a burden…

The shame leads to fear. I wish it didn’t, but it does. Questions like, “Why do you love me?” become mental thermometers to that person’s value because, well, obviously no one would want to be be coupled with the “perceived shame” of a disabled person. The best effort is made in making sure the discrepancy is never seen, or if it ever is, only through the veil of humor and lighthearted playfulness. 

Battling that shame as a Christian is a minute-by-minute battle. I cling to passages like John 9 when Jesus declares that the man in question was born blind in order to show God’s glory to those watching. We live in an imperfect, sinful world. Somehow, God uses those imperfections to make His name famous. He doesn’t make mistakes.

… I’m not a mistake…? When my body forces me to need my closest companion, I sure as heck feel like a mistake. 

1 Corinthians 12:22-25b says, “On the contrary, it is much truer that the members of the body which seem to be weaker are necessary; and those members of the body which we deem less honorable, on these we bestow more abundant honor, and our less presentable members become much more presentable, whereas our more presentable members have no need of it. But God has so composed the body, giving more abundant honor to that member which lacked, so that there may be no division in the body, but that the members may have the same care for one another.”

No one wants to be the “weaker link.” We often laugh at that concept because we want to tell ourselves we aren’t the “weaker one.” But when we are… this passage becomes simultaneously comforting and terrifying. 

It’s comforting because we’re constantly reminded that God sees us. Its terrifying because we have to come to terms with the fact that our  “discrepancies” are more for the benefit of someone else rather than ourselves. If God gave us these limitations in order to sow the body of Christ together in a more genuine way…

How dare we feel shame?
 

Living Beyond Assumptions

All he did was asked questions over an article. 

His eyes got as big as saucers as I explained the medical journey behind the 1,800 word synopsis being offered to a publication company. One explanation led to another… And another… And another. The questions were painfully typical and mundane. I felt as if I was answering the curious questioner in my sleep. My writing had led me towards this type of impromptu interview before. 

But then, he said it:

“Wow. I guess you’re really not that frightening at all. Listening to your story, hearing you explain it, everything that made you super uncomfortable (to be around) makes so much more sense. I never would have guessed… Like, geez, you’re great.”

He smiled the smile of a man who wanted to be applauded for a gracious compliment. I smiled a smile that threatened to whisper, “Because I love Jesus, I won’t break your nose when I punch you.” I’m 26-years-old and people’s fears over my disabilities still make me crumble to the ground in tears. Being afraid of my disabilities is understandable.

But if you suffer silently through those fears, all you’re saying is that you’re afraid of me

I can’t say I’m much better than this poor man who has become a victim of my sarcasm. I giggle at the differences within the disabled community because, even though I may feel uncomfortable at times, I feel accepted. But don’t you dare ask me to be open in other areas.

My biggest fear and struggle is learning how to talk to an addict like an equal. They’re my equal? Wait… You mean they can hold a conversation?

This isn’t a discussion about right or wrong, normal or abnormal. Our society has become such a culture of hiding behind assumptions we have become our fears. 

My young friend saw my differences the moment he met me a year ago. He was too afraid to ask.

I have reasons to be afraid anytime I’m around a person who abuses drugs. I’ve been at the mercy of certain addicts’ evils before. But believe it or not, when you can get them talking, they simply want to be seen and reminded of their value. I often forget that because I can be too afraid to write an exception to my self-righteous rule.

I learned a long time ago that God never told me my comfort was His first concern. His command is to love those around me no matter the cost. 

If I live in fear of the unknowns, I’ll never experience the joy of living fully by loving those I don’t understand.

Melodic Memories

It’s just a piano, but it represents so much. As a toddler, it signified naptime at my mama’s feet. As a child, it was my fortress in endless games of sibling tag (read: sibling torture). As an ill teen, it signified time to unravel the harsh truths of loving music but being too sick to share a God-given gift with the world.

As an adult, it was just friendship. Hours and hours of my mom playing through every chorus and hymnal we could find. I’d practice artistic liberty while my mom bit back a smile when it didn’t sound so grand. Hymns like It Is WellSoftly and Tenderly or Sweet By & By brought on “remember whens” of the days playing piano was two females’ only respite from a cruel, confusing disorder.

It’s just a piano, but every time I see one, I smile. I unexpectantly choked back a laughing sob today when I realized how much this holiday season will change my perception of my mama’s piano.

Instead of just my mama and I, God is humorously and joyously adding a male singer to that duo… Wait. What? In all my years of tickling the pages of a hymnal, I never thought three people around my mama’s piano would be a reality.

Instead of closing the hymnal and promising to come back and sing more next week, I’ll be begging God for another chance to sit and make music around the piano with my mama at least annually. Wait, what? My mama’s piano is one of the only childhood memories I can recall without assistance. Getting to giggle and sing with my music-making mama once a year doesn’t seem like enough.

My pensive laughter turned into awe when I realized why I’m so shaken over this year’s changes. Sure, I’m focusing on my mother, her piano and holiday traditions, but I still can’t believe the grace of God these transitions represent.

I never thought I’d make it to 26. I never thought I’d be able to act on my dreams and talents. I never believed I’d live long enough to have to figure out Godly relationships, let alone get to figure them out.

I never thought I’d grow out of being the little girl whose only release was at the piano.

Yet as I prepare to embark on an insanely unexpected holiday season, I can only hear God chuckle and pull me in as He whispers, “I’ve given you all of this and so much more. When will you learn your life has purpose?”

It’s just a piano, but it signifies dreams that were written and left unspoken by a 15-year-old, only to be told years later by the Master of Heaven Himself. 

Stuttered Leadership

“Your stutter disappears when you sing. It’s like Moses – so cool!”

To be quite honest, the very first thought upon hearing my acquaintance’s thoughts weren’t very nice. I handle being observed a lot better 1-on-1 than I do in a Church crowd. I wanted nothing more to deny I had a stutter at all. It only made me stutter more. 

Though I somehow got through the totally unexpected comment, I walked away with only one question on my mind:

Why? 

The man was right. When I sing, you would never know I struggle with English. When I sing, no one has time to ask questions about my authority in being on stage. I always wanted to be a singer. Up until I was 19, there was nothing I wanted more.

Why couldn’t God agree to re-writing my story so my life and career could be something I’m comfortable doing like singing?

As it stands, I’m pursuing a career in writing and secondly in ministry – two things I’m highly uncomfortable doing but have been firmly called to do. (We would include the whole bit about what God has called me to in relationship here, but that’s just not gonna happen) Every time I step into ministry, I’m nervous. Every time I write, I can hear myself questioning what the heck I’m doing. 

I feel incredibily inadequate in the shoes God has commanded me to fill. The sweet congregant’s comment about my “stutter” just made me realize it in a different light.

I started pitying Moses. I mean, he was probably a blastedly good shepherd. Exodus shares that he was a shepherd for 40 years. I betcha a million dollars that man ruled the whole sheep-thing. He was probably really comfortable with his dumb animals in the desert.

But regardless of his comfort level, God, in His infinite wisdom, put the stuttering shepherd in front of the Egyptian King and in charge of an entire nation. Poor, poor Moses. The guy just wanted to be comfortable. But… You can’t challenge a king and a nation without talking, stutter and all.

Moses really wanted God to pay attention to the fact that he stuttered. God paid attention to it and made him the leader of exiled Israel anyway. Again… Poor Moses.

Again… WHY?!

I struggled the rest of the day (okay, I’m still struggling) with the fact that, according to one man, my inadequacies are out in the open but God still has me up front in a leadership role. I would love to now leap into a long, divine monologue God gave me late at night answering every deeply seeded need in my heart. But I can’t, cuz hallelujah, He didn’t give one. I was only reminded of one very hard, incredibly gorgeous truth:

When I am seen as inadequate, people are led to look at Christ who is more than adequate. 

No Longer Beautiful?

As an epileptic teen, I had a body that made the models jealous. When you have a seizure 20 times a day for 5 years, fat doesn’t have time to accumulate on your frame. My parents tried everything. There was a season where my daily diet included potato chips and a large strawberry milkshake. (To this day, my mother harkens back to how bad of an idea that was because she had to get a milkshake, too.)

No luck, though. I was 18 years old, 85-90 pounds and I had muscle in places that made people talk. I loved it, to be honest. I thought it was funny. In secret, it became my identity — My claim to fame outside of the doctors and blood draws.

 Now though, in my mid-twenties and relatively healthy, I read off those stats and I get that beautiful glance that says, “It’s not polite to tell you you’re lying, but there’s no way you… Yeah, no.” Whereas once upon a time I felt as if I could lift anything, now I’m thankful when my arms are free of anything.

I cried when I put on a size 2 jeans my freshman year of college at 19 years old. Cried. As in, oh my word, my world is over. I’m a frikkin’ size 2. I was always told my size made me beautiful. Maybe the well-intentioned souls that uttered those words meant it made me more beautiful. Who knows. That sentiment ends depending on the number of your jeans and the letter in your shirt, apparently?

When I put on a size 6 at 22, I’m fairly certain I had the fleeting (not acted upon) thought, “Jesus, 5 seizures will make me lose a size; whatdya say?” Needless to say, I never got my wish (halle-frikkin’-lujah). A size 6, to be fair, would be heavenly these days. Just sayin’. 

I hate to admit it, but after 18 years of not having to work at turning heads, there are days it’s all-consuming to realize I’m not someone who stands out in a crowd. Americans have completely re-written the definition to “beautiful.” 

I’m not saying it’s wrong to work towards being healthy. By all means, dang it, do it. But someday soon, can we stop only reserving the word beautiful for the women and men that look like they belong in a fashion show?

 As Christians, it’s very easy to see what the world has done to beauty and stand around critiquing the critique of the critique. Why do what we can to change things when we can just put our 2-cents in and walk away without any responsibility in changing what’s wrong with our world?

I challenge you, I challenge myself, to live with the Biblical definition of beauty written on our minds.

Love for others and love for God. That’s it. That’s all beauty really is.

Don’t Touch My Butt

Though humorous, the question is never easy for me to answer.

“Why’dya touch/hit/grab my butt?!” I’ve heard that question a million times. If I didn’t like being alive so much, I’d answer sarcastically just to hide my blush and/or deep desire to laugh and cry simultaneously.

I tell people not to scare me. It used to be because my epilepsy was a ticking bomb and scaring me made the bomb go off sooner. But I can’t blame this one on my epilepsy. I wish I could. “Sorry, Dude, before I have a seizure, I have to touch someone’s butt.” I’m not a creeper.

Unfortunately, it’s due to the joys of having hyper-tension spastic cerebral palsy. Basically, all that means is the verse that says, “Don’t let your right hand know what your left hand is doing” is quite Biblical in my li’l body. Yep. 

The tension/spasticity  gets worse when I get scared and don’t have time to literally talk my limbs out of moving. I sound like an idiot, but there are days when a siren scares me to death and I can be heard mumbling, “No, no, no. Stay where I put you…” If you ever hear that, just ignore me.

Some days, I think I’ve conquered the whole “be humble and filled with the Holy Spirit” thing. Then I’m reminded by my disobedient limbs that I still have a ways to go. 

It’s moments where the “butt question” is raised where my pride is hurt but my heart is shouting, “Jesus! I don’t want this to be about me… Please. (Make me disappear for 30 seconds).” Being humble is a constant pursuit. For whatever reason, my Creator decided I needed my very own, permanently attached reminder.

But I’ve also learned that when all else fails, breathing deep and laughing anyway works better than attempting to explain it away. 

Heck, what else am I gonna do?