Epilepsy Sucks, and God is Good
I don’t post about our family journey with epilepsy very much, but today, March 26, is Purple Day — an international day for epilepsy awareness — so here’s a snapshot of our story.
Becca’s Epilepsy
My wife, Becca, was diagnosed with epilepsy almost nine years ago, when she was 35 years old. Turns out she had been having v. small, misdiagnosed seizures since she was in college, but we didn’t learn that until her seizures got much worse in 2017; she had her first GTC/grand mal that November. She was sitting sideways in a kitchen chair, and I was giving her a back rub. She fell backwards, and I caught her and held her and panicked and prayed and called 911 after she stopped convulsing.
Since then, she’s had hundreds of partial seizures (we call these “focal seizures” because they’re focused in one part of her brain), six GTC or grand mal seizures (these are the big, full-body, drop-to-the-ground convulsions that everyone thinks of when they think of seizures), and countless additional, tiny auras — countless because there are so uncountably many of them.
Since this started, we’ve been in four different hospitals, including Mayo Clinic. Thankfully, the doctors have finally figured out how to stop most of her worst seizures with a concoction of pharmaceuticals. Most of the seizures, but not all of them: Last week, she had another seizure and again can’t drive.
This has been unbelievably hard for all of us, and especially for Becca. She’s her driver’s license several times, driving (in total) just over two years of the last eight. Her memory has become noticeably bad; her seizures originate in her left temporal lobe, which houses language and memory function. She’s confused a lot. She’s been unable to hold a job. Even one seizure can knock us all back on our heels and rearrange our plans for several days while Becca is tired and sore and foggy. So far, she’s been spared the worst, though: She keeps her balance and can stay standing during her focal seizures, and I’ve been there to catch her for all of her grand mals; she hasn’t injured herself during a seizure, and her quality of life is remarkably good overall.
Still, we’re anxious and on edge all. the. time. We’ve had to get used to saying new words, like “postictal” and “disabled.” The kids have seen more than any kid should see, and they’ve been responsible in ways that no kid should be responsible. We’re all tired and, to be honest, we’re scared.
I’m crazy proud of Becca. It isn’t easy, and both of us have v. bad days, but I’m proud of her. She’s a champion. She’s been through a lot. She handles it with grace and humor, and she’ll be the first to tell you that’s probably because she’s entirely and blissfully unaware of her seizures.
The picture on the left, above, is from one of her two stays at the hospital’s epilepsy monitoring unit. They hooked her up to machines for five days of 24-hour live video surveillance and digital monitoring, then took her off her meds and waited for the seizures to come so they could record them and rush her down the hall for brain imaging. And the picture on the right is of our drive home just a couple days later; I snapped it at a stop light after we left the hospital. Look how beautiful she is! And look how happy we seem. If I didn’t know what she’d just been through, I almost wouldn’t believe it.
Please Excuse a Little Theology
Of course, we couldn’t make it through this without Christ holding onto us. We don’t know why this is happening, but we do trust that God is using it for good. We’ve already seen that in so many ways. It’s been my experience that suffering has brought us closer to God and that we more clearly feel and know and understand the sustaining love and comfort of Christ through this.
The truth is, my ultimate hope for Becca is not that she will be healed of epilepsy. I wholeheartedly believe that God can heal her epilepsy in this life, and I plead with him in faith every day to do so; I am confident he will heal her fully, in the next life if not in this one. But I do not place my hope or my comfort in her physical healing or in her victory over epilepsy. The Lord Jesus Christ has made it possible for her to have life and have it abundantly, even while having seizures.
Any expectation of a coming breakthrough in Becca’s health is thin and watery gruel compared to the bountiful feast of the gospel — the sure and certain promise that God is near her in her suffering, that God has through Christ made satisfaction for her sins and will one day make her whole, that he is working even in this disability for his glory and for her good, and that she will look upon the goodness of the Lord in the land of the living even if she has epileptic fits until the day God calls her home, where she will behold at last her savior’s face. This is the glorious hope of the gospel, the good news that a hurting and broken world needs to hear.
If you don’t yet know the saving love of God, please don’t wait: repent of your sins and trust in Jesus, who delights to save sinners like you and like me.
None of this theology is to say that it’s easy — only that we know God is good, and we trust that he’s using even epilepsy to accomplish his good purposes. In the meantime, please pray that we would have the faith to say, with Job, “Shall we receive good from God, and shall we not receive evil? The Lord gave, and the Lord has taken away; blessed be the name of the Lord” (Job 2:10; 1:21). And, while you’re at it, please pray, with Moses, “O God, please heal her — please” (Numbers 12:13).
What You Can Do
If you have even a few minutes to learn the basics of seizure first aid — Stay, Safe, Side — you can do so at epilepsy.com/firstaid. Learning how to respond in the event of a seizure can be helpful for the more than 3 million people in the U.S. who have epilepsy.
And, of course, Becca and I covet your prayers.
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