Tag Archives: Epilepsy

Epilepsy and Guilt

Photo by Joe Hastings (Creative Commons)

Photo by Joe Hastings (Creative Commons)

Everyone in my family feels guilty because of my epilepsy. Often the first thing I hear from someone once I begin to recover from a seizure is, “I’m sorry.” They apologize for not catching me in time when I fall. For not noticing more quickly I was seizing. For the embarrassment I must feel over the seizure. For any number of other things they didn’t do right.

Sometimes I am the one to apologize. I feel bad as I stumble groggily to the bed for messing up plans for the evening. I apologize because my wife bruised herself trying to catch me. I see the fear in my eight-year-old’s eye, and I feel responsible. I apologize to him for producing the fear.

NO MORE. We have banished apologies related to epilepsy from our house. It’s nobody’s fault I have epilepsy. My kids didn’t give it to me. It’s not their job to always watch over me. My wife is not the one responsible for keeping me safe. I am not intentionally having a seizure the hour before our Bible study because I would rather sleep.

Epilepsy is just part of our lives right now. Nobody needs to feel guilty about anything.

We all do this. We apologize for the pain of others. We say, “Sorry” that our challenges has produced scheduling inconveniences. I was thinking this morning about why we do this and realized something startling. We feel responsible for the well-being of those we love, even in the areas we have no authority, ability, or access to change.

We confuse love with ultimate responsibility, and we unintentionally play the part designed for God. God is the one who keeps us ultimately safe. He is the only one who can stop my seizures, though He chooses not to right now (for reasons I don’t comprehend). He is the one who doesn’t eviscerate that irritating supervisor at work (or is that just me?).

Guilt is always the result of trying to wear God’s shoes, because our feet just don’t fit. Let’s instead draw close to each other when the storms come. Love one another. Commiserate in pain. Hug when it hurts. Cry with each other. This is where true bonds of community are born.

It is always those who have weathered the tornadoes in our lives that appreciate the sunny days the most. Let’s make a decision to be among those who can celebrate in the deepest way as victories come. No apologies needed.

 

Adele fatigue, seizure fatigue

I hate to admit it, but we have watched several singing competition shows in our house – American Idol (first season only), The Voice, The Sing-Off, and we even tried Duets. Maybe I should not admit this in the blogosphere, but I have enjoyed most of the episodes, even with the knowledge that this causes my man card to be called into question. Something I do struggle with on these shows though is Adele fatigue: How many times can I really hear Rolling in the Deep sung in a fresh way, by a singer who “made it their own” while “staying true to the original artist’s vision” for the song (I swear I am going somewhere other than pop culture with this, so just hang on three more sentences)? At some point, I get tired of hearing the same songs karaoked over and over. I wonder at times if people feel the same way about my family when it comes to seizures. Do they feel seizure fatigue? Let me explain. Every time someone asks me how I am doing, or how my family is, I have to go through a mental checklist:

1)      Does this person know that Cynthia has epilepsy?

2)      Are they aware of my recent seizures?

3)      Was there a knowing inflection in their voice when they asked how I was doing?

4)      Was their eyebrow raised in a concerned way and/or a slight tilt of the head to express compassion?

5)      Do I believe that this person has the time or interest in a somewhat honest answer?

The truth is that the epilepsy in our family is an ongoing struggle that impacts every area of the lives of every person here in our house, as well as our extended family. Socially, my wife and I worry whether it’s appropriate to hang out with someone with my seizures fairly uncontrolled, as some people freak out over epilepsy. Since I am not driving, it puts a strain on Barbara, my oldest son and other local family members to ensure that the family gets everywhere they need to get on time. Every once in a while, I still run into a person who sincerely suggests or insinuates I am demon-possessed and should just love Jesus a bit more to get rid of my seizures – that is always awesome. Medically, the regular shift in drugs for Cynthia and I are being monitored by multiple people inside and outside our home to make sure we don’t have a dramatic increase in seizures, or break out in rashes, or have psychotic episodes, or get depressed or hyperactive.

As a result, a simple question can feel like a landmine, because I just assume most people don’t really want an answer on that level. Really, they are probably looking for the classic one-sentence answer, “Doing great – how about you?” It’s tough to say that, because we aren’t doing great. Some days are good, some days are bad, but none are really great yet because the specter of epilepsy is hanging over our heads in a way we are still unaccustomed to. In time, I am sure we will have days that are great, but we just are not there yet. Still, I worry about people feeling seizure fatigue if I give them an honest answer every time they ask, because then maybe they will stop asking. We all know that person who is down all the time:

ImageI don’t want to be Dr. Doom. But I don’t want to lie either. The Bible is pretty clear about the value of honesty in community, and I am a HUGE proponent of being real in relationships with one another. Yet I really feel stuck. Readers, whether you have epilepsy or not, I am sure that all of you have gone through seasons where you just sort of feel down in the dumps most days. How have you balanced being honest with preventing people from feeling fatigue from being around you?

Scripture bombs

Ever been real with someone and they respond with a Scripture bomb?

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It’s related to a Jesus Juke but is a little more defined. What happens is this: you share something personal in your life, usually something you’re struggling with, in the hopes of getting some encouragement or at least a kind ear. For me, it’s usually with someone I trust, because I tend to be a tad private and closed. Instead of kindness or hope, they quote you a Bible verse, then walk away. BBBBOOOOOMMMMM!! You’ve just been Scripture Bombed!

Don’t mishear me. I believe the Bible is the best source of hope and encouragement on this planet, but sometimes your hope needs skin. That’s what community is for, because a book, even a Holy Spirit inspired one, never gave a hug, or smiled, or shared a lunch with you. Only the Church of God can do that. Maybe that’s why the Scripture bomb is so destructive. Because we know in our hearts that we should expect more.

I never know what to do when I get a Scripture Bomb. What about you — ever been the victim of a well meaning bomb? Ever given one (I know I have)? How do you respond?

Then She Started to Hula

One of my college buddies recently found this blog and commented on it. As I read his words of wisdom to me, I realized something about the short life of this blog: it has definitely been written in the minor key of pain and sorrow. Certainly this has been due to the recent challenges we’ve faced as a family, but it’s unrealistic to write only about difficulties, because we also have a lot of laughter in our home. There is nothing that warms my heart like seeing joy – pure unadulterated joy – on my kids’ faces. Here’s some examples of what I mean, from when my kids were younger:

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Today I want to walk down memory lane with you as I recall a particularly fun day in our family history. About 6 years ago, we visited the Aquarium of the Pacific in Long Beach with my mom and step-dad, and it’s likely not a day I will soon forget. Our kids had such a wonderful time coming face to face with literally hundreds of sea creatures. The day was filled with “Ooohs” and “Aaaaahs” and “Look at that” and “Have you ever even imagined a creature like this before,” and then it got better.

Some professional Hawaiian hula dancers were visiting the mainland, and gave a demonstration to the crowd. Then, they called for volunteers…and our daughter Cynthia was chosen. She was so nervous, and a little confused. She’s never been the most coordinated person on the planet, and she has always had some social anxiety. But we cheered her on, and encouraged her, and she walked up on stage and did her best to imitate the hip gyrations of this master hula dancer. Now, she was preschool age, so she didn’t have a clue what she was doing, but it was adorable. She was hula-ing her little butt off, and grinning from ear to ear. Because of her joy, the whole family was just filled with laughter and merriment, as we watched Cynthia – daughter, sister, granddaughter – smile her head off and shake her booty. It was one of those precious moments where all seemed right with the world. Joy overcame any sorrow, and fear of future problems. It is moments like this that we live for as parents.

I would love to hear your stories – when did you kids’ infectious joy capture your heart?

God’s No, My Sorrow

I have been dealing with some health issues lately that have been very concerning. After 15 years on no medication without any seizures, I have started having seizures again over the past two months. Sometimes they are absent seizures; sometimes they are convulsive seizures; sometimes they are partial complex seizures, but what matters really is that they are seizures. This is distressing for any number of reasons – I could legitimately have problems with my job, as I am required to travel; a busy family life becomes difficult with one less driver; I feel incompetent when I need my wife to chauffeur me somewhere. But for me, this biggest source of discomfort for me is something entirely different:

I have been praying for the last 7 years that my daughter Cynthia would be healed of her epilepsy. One time recently, I even thought I heard the Lord tell me that she was healed. Now, not only is she NOT healed…neither am I!

I have been struggling (a lot) with this turn of events. Doubt whispers little lies into my ears—

What kind of God does this to you?  How is making things worse showing love?Maybe it’s your fault that you and Cynthia have seizures. If you read your Bible more, or prayed more, or sang that new Chris Tomlin song more, then this wouldn’t be happening. God must be mad at you. You are not good enough to be healthy.

Now, I know none of these things are true, and I am not entertaining them (for long), but the issue remains – how could this happen? I have started slowly telling some folks about this change in my health, folks I trust with my heart, with my weakness, with my sorrow. Most have been very considerate, and have strayed away from those unhelpful trite things we think are in the Bible but aren’t. But one person unexpectedly dropped this gem on me:

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After a moment of struggle, I decided against destroying him and wiping his memory from the planet, because I know he meant well, and he just did not know how to respond to my news. But, it motivated me to look again at what God DOES promise in the Bible about sorrow. Now maybe you are thinking to yourself, “Dude, you are not sorrowful, just messed up about having seizures!” But sorrow is just one more word that we have misunderstood in our society. Sorrow does not mean deep dark suicidal depression, which is what we typically image in our minds. Rather, it is uneasiness or pain of mind which is produced by the loss of any good, or of frustrated hopes of good, or expected loss of happiness. So my newly ‘discovered’ seizures are indeed cause for sorrow in my heart. Now that we have that cleared up, I want to share with you the journey I went on through the Scriptures to understand God’s heart and His actions toward sorrow. Hope you enjoy the ride – let’s start with Psalm 34:15-20:

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We see here that the Lord watches over us and listens for our cries, and that sounds great. But here is where it gets a little confusing. He is near to the brokenhearted, but rescues the crushed spirits. Then we read we will face many troubles, but the Lord will keep our bones unbroken. So, what’s the difference between crushed spirits and broken hearts, and why are bones more important than hears anyway? Seems like more questions than answers really, but I will hold those questions in tension while we move to another passage, Matthew 11:28-30:

28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.30 For my yoke is easy and my burden is light.”

At first glance this looks great, especially if we only read verse 28. It seems like we get to trade burdens for rest, thanks to Jesus. SIGN ME UP! Then it quickly gets less exciting though, as we move into talking about yokes. You might not know this, but a yoke is the implement that is used to guide a beast of burden, like a mule. Jesus offers for us to come and….be a mule beside Him? That sounds less exciting, because the burden will still clearly be there. Then He says that He has a burden too, and will share it with us. Now it feels like we are moving in entirely the wrong direction. I wanted to throw my burdens on Jesus, but He is sharing His with me. Wait just a second here! Still more questions than answers, I am afraid. Let’s see if another verse helps:

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Oh boy – now we are promised trouble – not an improvement. Maybe I am just not looking at the right verses? Well, a closer look at this verse might help a little, because there is another equally powerful promise. We will have problems, but Jesus has overtaken the world. But what does it mean that He has overtaken the world, and why aren’t my problems history, if my God has the victory? That is a long question involving some pretty heavy theology, and maybe worth another post in the future, but frankly I don’t want to dive deep into Kingdom of God theology today, so I will try to keep it simple. Jesus is saying that He is the King, He is on the scene, and He is going to win the battle in the end; in the meantime, pain will come, but we can rest assured that victory is assured.

This isn’t always as inspiring as I would like it to be, because I want God to have complete and total domination over all the harshness in my life. This is where the other passages come into play, because my desires and God’s don’t align. I want the easy life, but God wants intimacy. I want no sorrow, but He wants me to be close enough to hear His whispers. Sometimes, there are no easy answers, and God seems distant in the midst of my sorrows, but I have learned that drawing close to Him always brings me peace, every time.

Do YOU Believe in Back-Handed Grace?

Have you ever found yourself grateful to God that things aren’t worse? I used to think of that as back handed grace, and almost offensive to the goodness of God. It just never seemed like I was operating from a place of strength when I said something like, “Well, it could always be worse. Thanks God, for not letting it be THAT bad?” I have lots of opportunities to practice this type of praise, as we have some pretty tough weeks with my daughter’s epilepsy and autism, not to mention our three boys. My wife has been telling me for years that I am missing an opportunity to exercise my gratitude muscles by not recognizing the goodness of our present circumstances in this way, but I have never believed her…until this week.

I was a chaperone for my son’s overnight Outdoor Education field trip, in which all 6th grade students in the school experienced nature first-hand.

(For the record, all parents who voluntarily spend 24 hours with 100+ 6th graders without pay deserve to share Parent of the Year honors. Perhaps on another post I can share with you the cacophony that exists in such events, the patience that is needed to survive such events, the power of earbuds in such events, and the…but I digress.)

I was responsible for six boys: my son, four of his closest friends, and a high functioning autistic boy I will call Bob. His name isn’t Bob, but I don’t feel comfortable giving names of folks outside my family; you will soon learn that Bob is my default name for males, while Susie is my default female name. Bob reminded me so much of my daughter Cynthia, from the emotional immaturity to the extreme discomfort with loud noises to the misunderstanding of social cues resulting in embarrassment and confusion. I was really drawn to him, to try and give him some sense of hope, of joy, and of acceptance.

This was harder than I thought, for a few reasons. To start with, Bob wandered off on his own a lot, despite clear instructions from teachers and others to stay as a group. His natural curiosity got the best of him, so I had to go find him regularly. This resulted in some frustration for me and him. Bob just wanted to explore, and I just wanted to manage my kids from a single location.

Beyond that, his lack of social skills resulted in some very interesting moments. At one point, he was running up and down the dorms in only his underwear, undulating his belly and growling at anyone who would come near. I had to redirect him as kindly as I could while stifling laughter. Then it got real for me.

As Bob was in the bathroom, a few kids were talking about him. One said that he just didn’t understand Bob, and thought he must be gay since he’s so weird. I let the boys talk a few more moments along this line, hoping one would recognize their ignorance and callousness, but no such luck. Actually, the language got ruder and ruder. I stepped in, explaining that Bob was autistic not homosexual. I tried to explain high functioning autism as best I could to a 6th grade boy, describing that Bob’s brain is just wired a little differently, and that he struggles to understand how to interact socially. The kids responded to me with such hatred and anger in his eyes as he said, “Kids like Bob should be put somewhere, so that normal people like me don’t have to deal with them. He sucks!”

In that moment, my heart broke – for this boy, for his parents who have obviously not taught him to love, for his peers who all accepted this statement as right and good, for the teachers who try to step in and coach kids to care when the parents don’t do it, for our society where fear of those who are different is still the norm…but mostly my heart broke for Bob.

I recalled watching him through most of the day, and the consistent loneliness and rejection he received. An entire table of kids moved when he sat down for lunch. When we were in wet lab, he had 7 kids tell him no before he could find a lab partner. On the bus ride there, he ended up in the front of the bus with the teacher because things were just too loud and crazy for him. He asked to sleep above me because he was afraid someone would hurt him while he slept, unless he was on my bunk. I found myself in that moment wishing I had tried harder to be his friend, that I had allowed kindness to ooze out of my heart toward him every moment I was his chaperone, that I could teach his peers that he is a wonderful kid. Bob talked to me at lunch for 15 minutes about an idea he had to make hydrogen energy plants affordable, and how this plan would solve the energy crisis our country faces by minimizing our dependence upon foreign oil. He is brilliant…but none of his peers know that, because all they see is different, and difficult. They miss the uniqueness that God placed in this young man. I fear that this special gift, this treasure that only Bob has, will be lost underneath the weight of sorrow and despair.

As I considered this things and sorrow filled my heart, slowly a new-found back-handed hope also sprung in my spirit when I thought of my own daughter. Like I said, Bob and Cynthia are very alike, and she is only one year younger than him. Yet her school experience is very different. There are two or three girls who genuinely enjoy Cynthia. Her class does not judge her for her autism, or her epilepsy. Last year, it was her classmates who took the lead when Cynthia had a seizure in the cafeteria, because the lunch staff was unprepared. They care for her, they watch out for her – dare I say, some even love her.

Now, I wish I had answers for why Bob doesn’t get the same kindness my daughter does. I will be regularly praying for Bob, looking for opportunities to talk with him, and likely talking with a teacher about the cold-heartedness I saw in his peers. What I appreciative of is that God’s goodness for my own daughter was highlighted for me in the midst of my sadness for Bob. I am often confused by God’s ways, but I know I am not alone in this. It was the prophet Isaiah who said, “As high as the heavens are above the earth, so are My ways higher than your ways, and My thoughts higher than your thoughts.”

It only took a decade, but I finally understand what my wife has been trying to tell me. In the past, I could only hear her say it is good to thank God that things aren’t worse, but that wasn’t her heart at all. Instead, she was saying that I should look for the evidence of God’s presence in my life, even when it doesn’t look the way I want it to look. It is in the discovery of these divine kindnesses that I will learn to have the heart of God, and be more like Jesus to the next Bob that comes into my life.

How skilled are you at parsing out the good gifts God places in your life? Any tricks of the trade you want to share with a recovering cynic?

We misunderstand HOPE

This has been a tough week for me, so I was thinking last night about hope and feeling a little sorry for myself in the process. As I started spiraling a bit into sadness, I was brought up short when I realized that I was not focusing on my true hope…and I am pretty sure that I’m not alone. Hope is one of the many words we misunderstand in our jaded culture, and to our own detriment. Because we misrepresent it to ourselves, it is easy to think we are bereft of hope, and this is a horrific place to find ourselves in. Truly, anyone who is in Christ cannot be without hope. Yet we do not apply this promise to our lives, because we think hope is something different than it actually is.

Sometimes we think of hope as a wish or a preference. “I hope the Arizona Cardinals win 14 games this season.” This type of hope is almost trivial. Nothing bad will happen if the Arizona Cardinals don’t win 14 games this season. Sure, we may be temporarily bummed, but nothing is lost.

Other times we attach hope to something that sounds more like lust. Christmas gifts are the best example of this. “I hope I get the new iPhone as a gift this year.” Really what we mean here is, “I really want an iPhone.”

Yet another parody of hope is a desperate but unfocused longing for a better future. This is when we need something to happen to maintain some emotional stability, or to avoid pain, or to enhance our security. “I hope my mom beats cancer.” This is no small thing. If this hope is unfulfilled, pain and sorrow will most certainly follow.

But WHO CARES if we misunderstand hope? Why does it even matter? Good question. If we misunderstand hope, then we will find ourselves disappointed, not only in hope, but ultimately in the God who claims to be our hope. We all give lip service to the idea that our hope is found in Jesus, but this often becomes nothing less than a platitude we unhelpfully share with those in real pain. Romans 5:1-8 gives us a clear picture of where hope is grounded, how hope grows, and what the proof of hope is –

Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ, through whom also we have obtained our introduction by faith into this grace in which we stand; and we exult in hope of the glory of God. And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us. For while we were still helpless, at the right time Christ died for the ungodly. For one will hardly die for a righteous man; though perhaps for the good man someone would dare even to die. But God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us.

Hope is grounded in the peace with God we have access to through Jesus. This is good news indeed. No matter how dark the paths we seem to traverse in our life might become, our peace is settled. We do not have to convince God to love us, or even like us.

Hope grows through trials. I wish this wasn’t true. I want to grow in hope while experiencing nothing but joy, but that’s just not how it works. When everything is going our way, we forget Who is blessing us, and we end up taking credit for all the great things happening in our lives. When all our own abilities to manage a situation fall short, we are left with a choice: Will we trust that God is still for us, on our team, loving us, caring for us…or not? Each time we choose God, our hope is strengthened. But this is no easy decision. It is far simpler to forget the proof of our hope.

Our hope is proven in the sacrifice of Christ while we were sinners. We should never lose sight of the fact that Jesus took the penalty of our sin upon Himself before we made any efforts to prove our worthiness for this love. This fact stands firm and unchanging, no matter how difficult our circumstances. Before we even have the capability to earn anything from Jesus, He proved Himself as our hope by settling our debt of sin.

So I was considered all these things, I found comfort. Yes, there are things that I do not understand in my life. Yes, I wish I could feel the presence of God a bit more some days. Yes, I want my daughter to not have any more seizures, I want her autism to go away, and I want to understand why in the world my epilepsy would resurface. Instead of these wishes, what I get is the reality that the very same God who created the universe with a word, who came up with the ideas of gravity and planetary rotation and solar flares and waves…is for me. This is what real hope looks like, even if I am left stumbling in the dark in the meantime. When you find yourself at the end of your hope, where do you turn?