Category Archives: Epilepsy

When my Teacher was Dead Wrong

Photo by Thristian (Creative Commons)

Photo by Thristian (Creative Commons)

Update: My mom read this story and added some more detail which I had forgotten. I have put it into the narrative now.

It was a Wednesday afternoon in my sixth grade class, about twenty minutes before school got out. I went up to Ms. Strauss and said, “I really don’t feel good. Can I go to the nurse?” She replied, “School is out in twenty minutes. You will be fine. Now go back to your seat.” But everything was not fine.

I walked my friend-who-was-a-girl-but-not-my-girlfriend home, and then turned to walk down the road to my apartment. Feeling sleepy, I laid down on a grassy hill before crossing the street. In what seemed like a moment later, I got up and started to walk.

I was still in my postictal state, so I turned the wrong way to go home. I stumbled along for 90 minutes, crying and wondering why I wasn’t home. I started to pass a cemetery and realized I was walking toward my Grandma’s house. Crying from exhaustion and confusion, I finally made it home 4 hours after school.

As I walked into the door, I saw my mom’s face in a panic. “Oh Thank GOD you are okay! Where have you been? What took you so long to get home? I was about to call the police. I thought you were kidnapped, or killed, or who knows what else. What happened?” We both broke down crying with relief and fear.

“I don’t know. I was walking home and then I passed the cemetery by Grandma’s house. I don’t know what happened or why I got there. I am so confused Mom.”

“Oh honey, you must have had a seizure. I am so glad you are home now.”

I realized for the first time that day…I was not like everyone else.

Needless to say, my mom called the school the next day after I got home. I think she wanted me to hear her defending my safety. The principal was on the line with her. Practically yelling, she told him, “My son has EPILEPSY! You and your teachers cannot treat him like any other kid whining about his stomach. He knew he was not alright, and his seizure proved it. I expect better from you and your school. Starting NOW.”

Epileptic or not, I was so proud to be my mom’s son that day. She showed me how to love and defend and protect and care for a child. I still think back on this snippet from my life with gratitude, and challenge myself to rise up and be a parent like my mom.

Do you have any moments where you watched someone else and realized you wanted to parent just like them? I would love to hear your story.

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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.

 

Not Always Hope, Not Never Hope, But Sometimes Hope

Photo Credit: blmurch (Creative Commons)

Photo Credit: blmurch (Creative Commons)

I have had a few people ask me why the name of this blog is Sometimes Hope. “If we are called to trust God all the time,” the question starts, “why isn’t your title Always Hope or maybe Keeping the Hope?” I even struggled with this a bit myself. After some thought, here are three reasons I can only Sometimes Hope.

Sometimes I Fall Down the Stairs

Recently I was going upstairs to get my oldest son. I wanted him to clean up the kitchen. I was about halfway up, and then I had a seizure. Not that I remember the seizure. I recall walking up the stairs, then a second later being on my back with intense pain on my shoulder and back.

Having a seizure in such a dangerous place was bad enough. My kids’ response was even more difficult for me to handle. They all apologized to me like it was somehow their fault I had my seizure. As if they could have prevented my pain somehow.

To know that my children feel guilt about any seizures I have makes me sick to my stomach. My kids have enough pressures in their lives. They don’t need to feel responsible for me having seizures. But they do.

In moments like this, I want to curse God and die, like Job’s wife suggested. Questions of His faithfulness rage in my soul, like Asaph in Psalm 73:1 – 2:

Truly God is good to Israel,
to those whose hearts are pure.
But as for me, I almost lost my footing.
My feet were slipping, and I was almost gone.

In this moment, I have a choice: to trust the past faithfulness of God, or to view my current circumstances as evidence of His character. 

Sometimes I Let Myself Slip

There are days when I choose anger and resentment. Once in a while, that choice lasts a week or longer. I just let go of my kind thoughts toward God. I rage and allow my hatred to fester.

If this is how God is going to treat me, screw it! I may as well live my life away from Him. It’s so much easier to just walk my own path. No worries about this Getcha-God bringing sorrow into my life for some unknown reason!

My anger fuels this desire to step away from the God I have known for over twenty years now. Because my life is not working the way I think it should work. Because I have pain and my children have guilt. So I walk away and make my own path, in small ways.

I go through the motions of my faith without allowing any connection to my spirit. I don’t sing the worship songs. I don’t pay attention to the sermons. I let my Bible gather dust. I refuse to pray to God for any reason, even if it’s just to thank Him for our dinner. Slowly, I slip away from God and reassert myself as the master of my own domain.

What I eventually discover terrifies me though. I was not created to walk the Never Hope life. It is a land of confusion with no signposts to guide the way. Some may call this weakness, but I am not able to make my own path without the guidance of my God. Put differently, the antagonist from The Avengers movie Loki had it right:

You were made to be ruled. In the end, you will always kneel.

I Remember Whose I am

The moment always comes. Like Samson, who shook himself and realized he was without strength because his hair was cut. Like Peter, who heard the rooster crow and realized Jesus knew the denial would come. Like Asaph in Psalm 73:23-26, I realize what a fool I’ve been:

Yet I still belong to you;
you hold my right hand.
You guide me with your counsel,
leading me to a glorious destiny.
Whom have I in heaven but you?
I desire you more than anything on earth.
My health may fail, and my spirit may grow weak,
but God remains the strength of my heart;
he is mine forever.

I belong to God, and He is mine forever. Even when I fall down the stairs and curse God, I am still His treasure. When I consciously avoid any smidgen of goodness dropped down from heaven like rain in my life, I am still His chosen one.

So I hope again. Not always, because I slip and lose my way. Not never, because I am my Beloveds and He is mine. But sometimes hope.

Why I’m Proud to Wear My Superman Shirt

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Photo Credit: Klobetime (Creative Commons)

It was a hot summer Arizona day. The smell of barbecue burgers was making everyone wish it was lunchtime already. The joyful screams of children playing in the swimming pool filled the air as the adults lounged twenty feet away, enjoying the respite and the shade. Out of the corner of my eye, I saw my daughter Cynthia jumping into the water. Then her body went limp in mid-air as she started into an absent seizure.

I threw my sandals aside, dashed to the pool and jumped in after her. I saw her body face-down, lifelessly floating downward in the pool. I grabbed her and rose to the surface fast as I could. As we neared the edge, Cynthia remained in her seizure. I pulled her out of the pool with me and cradled her in my arms for about three minutes, as she stared off into space.

As quickly as it had started, the seizure was over. She looked up at me, completely confused. “Poor girl,” I thought. “She has moved into her postictal state, and is probably done swimming today.”

Not exactly….she smiled and said, “Dad? Thanks for hugging me, and I love you too. Can I go back to swimming now?”

I let her go swim with her friends, and stayed on the side of the pool, silently weeping prayers of gratitude.

What would have happened if I had turned my head to the left instead of the right and missed her jump? What if nobody noticed and my daughter slowly sunk to the bottom of the pool?

There is a possibility that my daughter may have died if things had been different.

It’s not very often that we have true life-or-death moments in parenting, but this was one of those rare moments in time.

Every day I don my Superman shirt, I think of that warm summer day, and thank God that I had the chance to play a superhero for an afternoon.

Even now, just thinking of that causes all the emotions to flood back into my mind though. The panic. The fear. The relief. The gratitude. I would be lying if I didn’t tell you that a tear is running down my cheek as I write this.

When have you been a superhero?

 

Originally posted as Fear, Trust & Parenting 1 of 4

Graffiti & Family Fun Time For the Win?

Graffiti Run

 

I declared 2013 the year to overcome, but what does it mean to overcome? The truth is, I don’t really know, but I will share as I learn, and I hope you will do the same.

Yesterday I learned that overcoming means facing multiple fears at the same time: fear of extreme dirtiness, fear of 5K events, and fear of seizures in dangerous public places.

We signed up as a family for the Graffiti Run, which is a fun 5K event where you have loads of colorful chalk-based ‘graffiti’ thrown at you while you run, walk or hula hoop your way through the course. Did I mention I don’t like being dirty, and I am out of shape? These are the small fears though, compared to what happened on Saturday.

The day before the race, I had two distinct and unique types of seizures that I have not had in the past. So my wife and I had a decision to make. Will we allow caution to win the day? I could legitimately have had a significant seizure during the Graffiti Run, with disastrous results. Together, we decided that fun would lead the way.

I ran the race without any seizures, and as a family we had an absolutely amazing time. If we had chosen to be overcome by my seizures, we would have missed the sheer joy, color, exhaustion, bewilderment, and nasty tasting graffiti we all experienced yesterday.

I would be lying if I said it wasn’t stressful, but it was worth the risk. Overcoming always is.

What can you do right now to face multiple fears and overcome in your life?

There is No Plan Q, Not Even a Plan B

I have been dealing with epilepsy for 4 months, averaging 2 seizures a day. I expend energy every day trying to find the imaginary pattern to my seizures.

 Do I have a seizure when I sleep less?

Does it happen when I sleep in too late?

What if I drink too much milk?

What about coffee in the afternoon?

Does stress produce seizures?

How about flashing lights?

 The list goes on indefinitely.  Each day I come to the same conclusion – there is no discernible pattern right now. My epilepsy is a part of who I am and is not going away. I can stay up late. I can sleep in. I can drink coffee. I can be stressed. I can watch flashing lights. Or I can avoid all of these things, and it won’t matter.

Until we find the right medication mix there will be seizures. This goes against my natural inclination to be the fixer. I want to solve the problems that are placed before me. My personality is to identify multiple solutions to a scenario and plot the best way forward.

http://flic.kr/p/hELVX

Photo Credit: Pfly(http://flic.kr/p/hELVX)

Most people have a Plan B. I have a Plan Q for everything. But not with my epilepsy. There is not even a Plan A. I just survive, relying upon my God to get me through each day. Relying upon my family to keep me safe. Relying upon my friends to give me encouragement when I need it.

There is no Plan Q. I am learning each day to be more okay with that. I am growing to understand what it means to trust my God more. I am learning how to lean upon my family and friends more deeply. I am learning this is a good place to be.

2013 – The Year to Overcome

Wish I could tell you that I am big into New Year’s resolutions, but I am not.

Wish I could tell you that I choose I key word or phrase to define what I want to accomplish for the coming year, but that would be a lie.

I usually view life more as a continuum, and see each moment as a chance to become someone better (or worse) than I was. But this year is different.

This year, my diagnosis of epilepsy in November has put me and my family in a bit of a crisis mode. The normal way of doing business just is not going to cut it. Something has to give.

I am not foolish enough to sit here and tell you that 2013 will be the year that I conquer my epilepsy, because that is not up to me. There is too much guesswork. The right medication. The right dosage. The right timing. The right positioning of Saturn in comparison to Venus.

I can decide how to respond to my epilepsy though, and starting today, I am not going to be overcome by it. I may continue to have 3 seizures every day for the rest of 2013 (God, I pray it’s not so). These seizures will not rule me.

I will not be overcome by this circumstance, no matter how much it just plain sucks.

Many years ago, God used Romans 8:31-39 to draw me into a saving knowledge of His Son Jesus Christ, and tonight He is using it to draw me back into a full assurance of His good intentions toward me. It’s a long passage, so here is just a snippet of it:

If God is for us, who is against us?…But in all these things we overwhelmingly conquer through Him who loved us. For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.

Won’t you join me? What do you need to overcome this year?

Lost Memories

 

http://www.flickr.com/photos/stuant63/2255781557/

Photo by stuant63 (Creative Commons)

Part of the struggle with being epileptic is that memories just disappear sometimes. No warning. No pattern. No rhyme. No reason. No hope of regaining them. They are just gone.

Like a very targeted amnesiac.

This can be infuriating, especially for a person like myself who (used to) pride themselves on having a great memory, and even relied upon this memory for many things in the past – my work, my parenting, my family, my joy, my love life. Everything.

Now my memory has betrayed me. It is just untrustworthy. It has…betrayed me. Sometimes I get very angry at this betrayal. I curse and scream at it. Sometimes I become sullen. I cry uncontrollably, “How could you do this to me?”

At the end of the day, though, I have to figure out how to deal with this new reality, and it is a wild wilderness for me. The way I have live the last thirty plus years of my life no longer apply. I must figure out a new way to operate, because my primary tool is now broken.

Lately I have forgotten some pretty important things. Like calling my step-son on Christmas Day. Like where I put my wife’s other Christmas present I bought her in August, before my seizures started. I have a feeling this won’t go away, so I need a plan, but I don’t have one.

I have only been an adult epileptic for a few months now – this is a new world for me, and one that is a bit frightening for me. Let me pose this question to the ‘veteran epileptics’ out there:

How do you know what you don’t know, what you used to know, and what you should know?

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?

Epilepsy brings out the mean in people sometimes

I don’t generally direct my irritation toward individuals or specific sites in this blog, but I came across something today that is just grossly upsetting.

ImageIt comes from this site: http://illogicopedia.org/wiki/Advertising_Epilepsy, which might be one of the meanest things I’ve come across in years on the Internet. I wish this site was the exception, and in a certain sense it is, because it is so rude as to be obnoxious, but I’ve learned people are afraid of epileptics.

When people are afraid, they say and act weird, or cruel, or just plain avoid you altogether. Unfortunately, this is what we’ve experienced in my family, especially now that we have TWO epileptics rather than just one. It’s like we are creatures from another planet. Some people struggle to see my daughter as anything more than this:

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but that’s not the whole truth. Truth is, she took this picture when she was trying to figure out her iPod, and it came out pretty funny. It makes her smile, so she kept it. But she not just some weird face with a creepy eye – she is also this:

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She just a precious girl, made in the image of God, who happens to have seizures for some unknown reason. Her smile can light up a room. Her laughter is contagious. Her innocence is something we could all learn a bit from in this dark world. But some people can’t see past the seizures, and she becomes a label with skin on, a statistic with bones, an anomaly without feelings….but that’s just not true. And now that I am also officially diagnosed with epilepsy, I worry that I will be minimized in the same way. Even worse, that my whole family will be ignored, shoved to the side, mocked, feared, and belittled, like the website above.

My prayer is that we will find those will are not just tolerant of our epilepsy, but go beyond that; friends who understand the difficulties our seizures can create, but don’t judge us for them; individuals who see us as more than the sum of our diagnoses.

I am sure that at least one of you reading this has to deal with labels that seem to define you to the outside world. How do you deal with that? Overcome it? Rise above it? Teach those around you to see more than the problem and find the real you? Any thoughts on how I can help my daughter deal with the mean bigots of the world?