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.  

Afraid to See Again

The surgery-induced blindness in my right eye is going away. After 10 years of learning to laugh at myself when I walk into pillars, people and posts, my 15% vision is finally gaining strength. According to the optometrist, I currently have somewhere in the zone of 35% vision. I should be excited about that. 

I’m… not. I’m not excited at all, actually. 

Logically, my random vision increase helps in unfathomable ways. Driving will soon not be a terrifying prospect. Most assuredly, it’ll be nice to see what my crazy cerebral palsy impacted right hand is up to all the time. Blindness isn’t convenient. 

So why do I care?

I hate my vision coming back because I’ve gotten used to the darkness. I’ve gotten used to living in such a way that compensates for the inconvenience and pain. It’s a lot easier for me to act as if I didn’t see things that hurt my feelings, gamble away my trust, or helps the people in my life think they got away with a lie. 

As weird as it sounds, living in darkness is comfortable. As my sight increases, I’ll get over it, though. 

I’ll get used to seeing the sun come in my window, and I’ll learn to love it again.  But first, I have to trust the difference. I have to trust that I really am seeing the silouette of a friend and the differences between green and red. If I don’t let my eye try to perform differently, I’ll lose vision again. 

How many times do I do the same thing with my sin? How many times does God whisper to my heart, “I turned your heart away from that habit a long time ago. Stop acting as if you need it more than you need Me”? But instead of agreeing and living in freedom, I act like I don’t know what freedom tastes like because I’m too used to my chains. 

…and the chains are comfortable.

How much of our sin nature exists because we’re too afraid to take God up on the promise that life can be different? What would happen if we trusted Him enough to try?

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.

No Longer Expert

I never wanted to be an expert.

A friend called me yesterday to recount a chance he had to help a man having a seizure. My friend told me everything he did for the student seizing. Some things he said confidently… Some not so confidently. The questions he peppered me with were typical of someone who has never had their brain betray them. It made me smile, but then he said it again:

“I guess you’d know. You’re somewhat an expert in that area aren’t you?”

Michael sarcastically entitled the event exciting. Knowing the surrounding facts, that the kid seizing fell into the street and had never seized before, I interpreted it with the reality. It was bloomin’ terrifying. In all our years of friendship, my childhood friend had only heard horror stories and seen smaller seizures. We’d had so many conversations of “what to do if” though, during the years we lived closer, I trusted him more than I trusted anyone. 

“You did everything right, Dude. The kid should be okay. You did everything right.”

As the conversation came to a close, I muttered under my breath, “Lord, what if one of the only reasons you allowed me to have epilepsy was so Michael could correctly support this stranger? Even though You’ve given so many other blessings despite the curse, what if teaching Michael what to do was the only reason? Would that have been enough for my heart? Is my faith strong enough to say my epilepsy was worth it because of that one unseen show-casing of Your glory?”

American Christians have this habit of always asking God, “What’s in it for me?” Even in light of a disease, we justify having issues if we can see the benefit. Like getting called an expert and being given respect. Or feeling God lead us to sell everything and leave our home, only agreeing because there’s a rumor we’ll get a pay raise.

We face turmoil because we’re banking on the fact that it’ll pay off for us someday. The fact is, as followers of Christ, the pay-off shouldn’t matter. When we mutter, “Use me however You want” that should be enough. We have no idea what part our story plays in the grander plan of the Creator of the universe.

He is, after all, the Ultimate Expert.

Value More Than Love

If I’m not leading with a joke about my half-brain, quirky limp or down right weird spastic right arm, something is seriously wrong with me. 

Not kidding… If my circumstantial frustration isn’t followed up with a quip, I must be dead.

This week was different, though. This week, I fought with a vengeance to hide my shortcomings. This week, when my loved ones joked about my half-brain, instead of joining in on the fun, I silently begged God to remind me what it meant to be loving. I knew my fun-loving attitude would come back eventually, but for some (unknown and short-lived) reason this week, with every joke, my heart whispered only one thing:

What is my value, then?

My heart’s poorly timed dilemma this week took me on a totally different view of God’s love and His creation.

In Genesis, when God created both man and woman, He pronounced them “Good.” He didn’t pronounce “I love you.”

He saw in them value — whether Adam and Eve exuded perfection or not was not the issue, He spoke value over them, anyway. He looked them in the eye and said one word, “Good.”

I wonder, did Adam and Eve learn to love their Maker because He did not spare a moment in speaking of their value? Did they fall in love with Him, learn how to trust Him, because they knew their value in His eyes? 

Is it possible His love for them wasn’t questioned simply because they saw love in the value He placed on them?

I wonder how many times we say “I love you” simply because it’s culturally relevant and expected. Though it’s an excellent aspect to share (I really love love, I promise), how many of us ask to hear “I love you” and really what we’re asking is affirmation of our value?

How many of us assume that everyone knows their value when in reality, God is asking us to be His voice for them because the world has deluded their ability to hear their value and believe it’s actually theirs?

Sometimes, proclamations of value speak louder than reminders of love. 

Ironic Purpose, Meaningful Life

“You’re letting me die and I haven’t even been kissed, gone to Prom or gotten my driver’s license. Okay.”

Tomorrow it will have been 10 years since I mentally went through and prayed about the things I thought I’d never experience as I was being prepped for brain surgery. Those three things were what stuck out as important… and those were the three things I was more than willing to give up if it meant God would take me Home instead of “making me” live.

Oh… How things have changed.

1o years later, none of those things are drastically important to me. I had to laugh this morning as I remembered my almost 16-year-old brain thinking my life was incredibly boring because I didn’t have those things. I was so enraptured by the lack of those experiences I even dreamed about them… I thought those dreams were all I’d have before looking my Savior in the eye.

This morning, I was humbled by the fact that such a memory brought joy, not mourning. Then I heard my heart cry, “You have so much more for me to do, Lord. Keep me here. Find me faithful. I’m not done yet.”

It’s been 10 years of joys, trials, tears and laughter, but God kept me here for a reason. I used to happily tell people my life’s purpose was to be a testimony of how to suffer and die with joy. Not kidding. Now, I’m starting to believe that I may be the last person God takes Home, simply because He really enjoys irony.

The idea of “knowing your calling” as a Believer in Jesus Christ has become a dramatically important thing. There are so many books on the topic (Thank you Os Guiness…) I’m fairly certain it has its own section on the self-help shelf at bookstores. I often feel as if I disappoint older Christians when I don’t tell them specifics in regard to what my “calling” is. Wife? Mother? Writer? Journalist? Teacher? … Hobo???

Who knows. But my ultimate calling has been ironically and beautifully defined. I have been called to plan for the moment yet live for an undefined, God-filled future. A future that I couldn’t dare to dream about as I signed a Do Not Resuscitate order 10 years ago. 

Come what may, I know the price of living on my deathbed. Now my God is giving me the right to discover the epitome of what it means to truly live.

I Dread Nothing

I took one look at my right hand this morning and choked back a sob. Its presence is small, almost unnoticeable, but it exists. It’s only one, but it’s a scratch mark. They’re back. 

Memories of my right hand riddled with scars from night seizures filled my mind. It’s been at least six years since my hand was marked with scratch scars. I never knew the arrival of one scab could fill my heart with such dread. 

I’m 98% positive the scab is from a bug bite I had just scratched absent mindedly through the night. But it’s the possibilities, the fears, the what-ifs of the remaining 2% that held my heart captive. 

I’ve learned not to beg God for a revelation of the future. The few times I could actually say I “saw something coming” were never for personal gain. But just the memories of a terrifying past filled with medical mysteries make my tongue ache with a desire to scream at the Heavens: 

“What?! What next?! Am I… When will I… Can I…? What’s my future, Jehovah?!”

Quietly, the reality of a bug bite flooded my mind. The fear of unconscious seizures gently slipped into the category of “imagination” & I felt my Heavenly Father-Daddy wrap His arms around my quaking shoulders. 

Child… Trust Me. Your future is filled with dread because you rely on fear to feel in control. Trust Me. Learn what it means to smile at the future simply because your past and your future share one thing: Me. 

Warped Healing

Just about every disabled person has a “healing” story. To be quite honest, disabled Christians can very easily sit around and crack jokes about “that one time I got prayed over.” Well, some of us crack jokes. Most of us cry while we try to joke because there’s nothing else we can do.

Asking God for healing for a disabled loved one is a beautiful thing. I’ve done it myself. There’s something amazing about realizing you’re entering into the Presence of the God who has the power to heal. I believe physical healing still happens today. But, Americans especially, have skewed the Biblical meaning of healing quite well.

I was six years old and the church we attended was my favorite place to be. Everyone knew my disabilities and everyone, for the most part, accepted me despite the fact that I “looked funny.” A darling, godly, older woman approached me one Sunday, took hold of my hand and said, “If you have faith I know that what I’m about to pray will heal you. If you don’t have enough faith to capture that healing, I believe I have enough faith to stand in the balance.”

What I heard?  (Remember, I was six) “Cassie, it’s all your fault if you don’t wake up in the morning without Cerebral Palsy. But I have this magic trick we’ll praise God for that will totally heal you because God is love.” I woke up the next morning and my Cerebral Palsy wasn’t gone. … I spent the next while doing my best to not be alone with the well-intentioned woman because I didn’t want to have to look her in the eye and ask her if she thought my child-like faith just wasn’t enough. I was afraid of the answer.

It had nothing to do with my “faith-level” and it had nothing to do with my friend’s ability to “perform healing” well. Nothing. It had everything to do with the fact that healing me was not to benefit God’s glory nor was it actively proclaiming His presence to anyone that needed that proof. 

I’m going to say something that may get my fellow comrades ready to kill me. The reality is, God has “shown up” for more nonbelievers by keeping me in this wretched body than He probably could have by giving me a story that sounds very much like a “once upon a time, you’ll never believe it, but…”

At the same time, God has come into more conversations because people quickly figure out I don’t form my hand in that uncomfortable position because it’s “fun.” If I didn’t have my body and seizures as a prop, I’m seriously convinced God would rarely come up in conversation. People say I’m outgoing and bold. The only successful vehicle God has used to make me that way is my deformed body. Why would He make something obsolete that He’s using so well?

Don’t stop praying for healing for those God has laid on your heart to pray for. But don’t be surprised if you feel as if His answer is a loving, yet firm, “no.” Healing is often prayed for out of convenience yet we promise God we’ll “praise Him forever if…” That is not the original intention of the miracle and gift of healing. 

What it boils down to? When you pray for healing, God’s greatest, eternal gift may be the healing of a broken, bitter and confused heart.

The Bet I Lost

No one ever though to warn me about survivor’s guilt. I don’t blame them… It’s only something that has overwhelmed me the last few months. 10 years ago, it was most likely the last thing to cross the psychologist’s mind as he did a post-operation evaluation. But it’s real. It’s hard. It’s the stuff of nightmares.

When you do life with people who have chronic diseases, you get used to fighting with all your might for the next breath, the next smile, the next anything. My friends and I made pointless bets about who got to Heaven first. We weren’t obsessed with dying. We were ready for life.

Recently, I sat and talked with a father of a friend who “beat me” at the betting game. He and I talked about the fact that, on Saturday, it had been 9 years since my last life-altering brain surgery. 9 years since my parents had to literally tell God He could have me if He deemed it necessary. It’s something to celebrate, really, and my friend’s father helped me do just that. We celebrated.

But then, almost instantaneously, his smile changed and there were tears in his eyes as he hugged me tighter and changed the subject.

I miss her. I barely knew her, but our struggles united our prayers more than any sister-like friendship ever could have. I miss her, I want her back but wouldn’t ask her to sacrifice her eternity with Jesus just because I want her now. Her parents feel the same way, which gives me freedom to have a relationship with them.

However, there are days when I feel guilty. Guilty that my parents’ tears didn’t join the others’. When I make eye contact with someone who knows full well healing after a death never goes away… my longing for Heaven slips and there’s only one thing that fills my heart:

Jesus, Jesus, Jesus. Thank you for giving my friend life and allowing me to stay longer… but he or she could have done so much better. Why were you done with them when it makes so much more sense to be done with me? Why am I still here? 

Though it’s done out of love, compassion and mercy, I never feel justified for asking that question. If anything, I walk away with my eyes filled with tears and God whispering in my ear, “How dare you? How dare you act as if you know your friend’s role on this Earth better than I do? Who are you to strip a family’s time of sanctification and redemption simply because it’s temporarily easier on your hearts? Child, ask your questions, but trust Me.

Survivor’s guilt is real. So is God’s mercy. So is God’s grace. So is God’s joy in anticipation. I’m not the One who wrote this story, but I’m learning to trust the One who did.

Abnormal Perfections

“Do you ever miss being normal?”

If I’m incredibly honest, I’ve wondered that same question when people with particular disabilities wander into my life. Whatever their ‘normal’ is, it appears to be the epitome of uncomfortable, so my ever-curious brain forms the question. Though I don’t voice the question; the underlying implied “truth” speaks volumes.

Obviously, my normal is better than yours. You poor thing.

Recently, a young individual was explaining to me their experience with a disabled friend. In complete innocence, they included the fact that this friend’s ‘sister is normal, though.’ I chuckled… and then I choked back tears. Without invitation, my mind started ranting over how easily we unintentionally allow our hearts to declare a person less than

Less than what? Normal? Less than us? Subhuman? 

Oh, may I be more careful with my words. May I remember that for every innocent phrase uttered with implied intention rather than loving purpose there is someone’s heart which will pay for my carelessness. 

“Normal” is just a phrase to many people, including me. But for many, it’s a slap in the face and a reminder that their surrounding culture has stopped remembering they have dreams, emotions, aspirations, joys and sorrows. 

Our concept of pitied abnormality is often times God’s concept of honorable perfection.