If you are of a certain age, I’ve just triggered Patty Smyth singing, “Bang bang!” in your head. You’re welcome.
If you have no clue what I’m talking about, I’ll wait while you find it on YouTube (“shooting at the walls of heartache”🎵🎵).
Actually, this isn’t a light post but that song came to mind so I decided to share the torment.
A friend’s daughter watched Cody recently when Chuck and I had to be gone for four hours for a stroke assessment appointment. As I dropped her daughter off at her house, my friend came running out her front door, “You can’t leave till I talk to you!”
I hadn’t seen her in many months, since before the stroke.
We talked in her driveway for an hour, about the stroke and about the recovery. About how hard it had been. About things that made me cry in front of her.
At one point, she told me I was strong, “stronger than 95% of the people in the world.”
But no, I’m not strong.
I mean, I was standing there crying – how is that strong?
Four years ago, I met her and five other friends one night for one of the ladies’ birthdays. I hadn’t seen any of them for months that time either, probably at least six months because I had been grieving Cody’s epilepsy – again. We had learned that his MRI had been misread three years earlier; consequently, they had diagnosed the wrong type of epilepsy, thinking it was one he could outgrow.
After a second clinic correctly read his MRI, however, we learned he will never outgrow epilepsy, never get off medication, never be seizure free. And would likely need brain surgery to get any sort of seizure control.
So, I had grieved and hadn’t seen people for quite a while.
Then, I decided to go to dinner with friends and, as I walked up to the table where they were all already seated, two of them spotted me and yelled out, “CARRIE!!!” People at the other tables looked, trying to figure out why I was receiving such a boisterous greeting.
That night I told them everything we had learned, the newest utter heartbreak we had endured. And I cried so hard at times that I’m not sure they understood everything I said.
But, with eyes wide at what I was telling them, one then another would tell me, “You’re so strong.”
No, I thought, I’m not strong. I can’t handle this! It had been six months and I still couldn’t talk about it without crying.
This summer, four years after that night, one of those same friends told me, “You’re so strong.”
I drove away from her house thinking, “I’m not strong. I’m not strong. I’m not strong! …am I strong?”
So, I’ve been contemplating for the last month if I’m strong. And I had clarity recently.
I was listening to music and a song called, “Ain’t No Grave” started playing. I looked up who wrote it because it was a newly recorded version but I was pretty sure it was an old song, which it is (almost 100 years old).
I also learned that, among the many people who have recorded it, Johnny Cash recorded a version right before he died. According to the producer he worked with, “Johnny said recording was his main reason for being alive. I think it was the only thing that kept him going.”1
Music.
It’s what he did, who he was.
And I wondered, “What do I do?”
“I fight,” popped into my head.
I fight epilepsy.
Daily with and for Cody.
But for others too.
I had that thought about a week ago. Today, it’s true again as I get ready to battle epilepsy once more.
I received a letter yesterday from our insurance provider. One of Cody’s epilepsy medications is brand because it’s so new; except now there is a generic and insurance will no longer cover the brand medication that has finally been controlling his seizures – even though he has had breakthrough seizures in the past going from brand to generic and even though he has celiac disease and we have no guarantee that whatever generic is the cheapest and purchased by the pharmacy’s vendor that month will even be gluten free.
Yes, that’s a run-on sentence – because that’s exactly how my mind is thinking it as the fear and anger are bubbling up in me.
We finally have really good seizure control, only 1-2 seizures a year for the last three years in someone who, four years ago at the age of 7, had to begin brain surgery assessments because he was having too many seizures. Whose doctor just told us last month that there is no reason to consider surgery at this time because he has such good seizure control.
We finally received good news from the doctor less than a month ago when, after an overnight EEG, she said, “This is the best EEG I’ve seen for Cody in a long time.”
He’s finally gaining weight, after completely stopping growing in height and weight for two years before we determined he had celiac disease, and we went gluten free on everything. I mean EVERYTHING. Food, beverages, toothpaste, shampoo.
His epilepsy meds.
And now insurance just doesn’t care what works for him. What keeps him healthy and safe both epilepsy- and celiac-wise. Because he hasn’t proven that taking this specific generic will give him an allergic reaction (their only criteria for authorizing coverage for the brand medication).
I got teary reading that letter yesterday.
And I actually started crying today as I dialed the insurance company’s representative – so much so that I had to not finish dialing because I wouldn’t have been able to talk to him if he answered.
I’ve been crying throughout the writing of this post.
No, I’m not strong.
But, with God’s strength, I am a warrior.
Oh, fear is a liar with a smooth and velvet tongue
Fear is a tyrant
He’s always telling me to run
Oh, love is a resurrection and love is a trumpet sound
Love is my weapon
I’m gonna take my giants down
Molly Skaggs, Bethel Music, “Ain’t No Grave”
1https://www.songfacts.com/facts/johnny-cash/aint-no-grave-gonna-hold-this-body-down
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