Tag Archives: family

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.

 

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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

Ghosts of Christmas Past, Hope For Christmases Future

I was probably eight years old, and we were at my uncle’s house for Christmas. All of us kids were in my cousin’s room. I wish I could say we were having a great time, anticipating who would get what presents, or when the hot chocolate would be ready, or if we were going to get a visit from Santa Clause this year. Unfortunately, we weren’t raised in this sort of family.

No, we were all in this bedroom, hiding and hoping nobody would notice we were gone for a while. You see, we had all been screamed at and threatened with beatings for playing tag in the back yard, so we were afraid. We didn’t know what to do.

Aren’t children supposed to happily play in the back yard during holiday festivities, we thought to ourselves? Apparently not…but we weren’t sure where that left us, so here we sat, afraid.

I wish I could tell you this was the exception, but it was not – every family gathering when I was young was marred by actual violence or its spectre, so a shadow always hung over each holiday.

Some twenty years later, its pallor still haunts me. I cannot shake the suspicion that an angry drunk man is going to come lumbering into the family room ready to take a swing at me for some imagined offense, and ruin my joy.

So I make a choice. I preempt him. I preempt joy.

Unfortunately, my kids and my wife pay for my choice. Every year as Thanksgiving rolls around, the storm cloud begin to roll in over my head. I become more short-tempered than usual. My depression kicks into high gear. I find myself crying at nothing one moment, and seething angry the next.

I made a vow a while ago to not be like my dad’s generation, to bring joy into the holidays, but instead I find myself shackled by my past. Each year, it seems like it gets a little better, but I fear progress is too slow, the scars are too deep, the pain is already settled into the hearts of my own children, the expectation of anger is already set for my own wife. I begin to lose hope, the tears start to flow, and despair mounts again. Then I recall Lamentations 3:22:23 –

Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.

This promise each year becomes the prayer of my spirit. “Oh God, do not allow your compassions to fail, or I will be consumed by my own past, as will my children. May Your compassion arise fresh and new every day in the eyes of my family, as they view me through Your grace, and see the best in me.” Slowly, I begin to conquer these demons from my past and make meaningfully good memories for my own family that extend beyond these fears.

I know now I am making some progress. Six years ago, my oldest son told me he never wanted to get married, because he never wanted to fight with anyone around Thanksgiving and Christmas the way my wife and I fought. He doesn’t say that anymore.

Now he talks about looking forward to raising his kids with his wife in a home where they will celebrate and enjoy the holidays, like we do. Sometimes even miracles takes times, sometimes decades or even generations.

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?