The Prevalence of Pain by Dena Dyer
Today, I picked up my youngest son Jax after leaving my non-profit marketing job for the day. The sky was grey, like my mood, filled with bulbous clouds threatening a downpour. I could smell the rain and all I wanted to do was sit and read a book--not drive around town. Texas storms can come on quickly and unleash quite the fury of hail, wind, and rain, after all. However, Jax had called me at my office earlier to ask if we could “get a drink.”
He doesn’t drive yet, and as I’d found with his older brother, Jordan, teenage boys will often talk to their momma if she provides sustenance and watches the road instead of him. In four months, Jax turns sixteen and a license awaits, and my window of connection will close further.
I pull into the garage and text “here.” Jax comes out and gets in my Kia Sportage. “Hello, Mother,” he says ultra-formally, as he always does, with a grin.
“Hello, son,” I say. “How are you feeling?”
“Not great.” He grimaces as he grabs my phone. This is our ritual; he turns off my phone’s Bluetooth connection, turns his on, and plays me his favorite music while we drive. It’s precious time, which I guard jealously.
For months now, Jax has been suffering from near-constant back pain. He’s also had nausea and fatigue, but his bloodwork, X-Rays, and scans have come back clean. We’ve tried all sorts of treatments—heating pads, chiropractor, massage, physical therapy, and even muscle relaxers at night—and still, he hurts. My husband Carey, Jax, and I are all frustrated with not knowing the root cause or having a diagnosis.
Carey and I have served in ministry to Christian churches throughout both our lives. We’ve long believed, and taught, the biblical principle that God uses suffering to make us into more compassionate, servant-hearted people. However, it’s easier to preach that when your child isn’t undergoing severe pain.
And Jax has always been a “mama’s boy.” He used to love to cuddle with me, and he didn’t like spending the night away from home until well into middle school. We’ve always been close, and we share a passion for music, writing, and theater. He introduced me to the “Dear Evan Hansen” soundtrack; I took him to see “Hamilton.”
It hurts me that he hurts.
~
When I was in elementary school, I sometimes faked being sick so I could stay home and watch the second half of “Captain Kangaroo” on CBS. Once I had gotten dressed in my corduroy bell-bottoms and peasant top, I was allowed to sit in front of our giant RCA TV with my breakfast and eat while watching one of the three channels our antenna picked up.
The Captain and his sidekick Mr. Green Jeans made every morning a little bit sunnier, but since our family of four lived on a ranch twenty miles outside of town, my little brother and I had to leave in the middle of an episode to make it to school on time.
Because I loved school and craved my parents’ and teachers’ approval, I chose these “sick” days very carefully. If an episode seemed too delicious not to finish, I stretched out on the nubby shag carpet in front of the TV, moaning softly. When Mom came in the living room to tell me to brush my teeth, she looked concerned and crossed the room to stand over me.
“Sis? You okay?”
"I feel bad,” I replied. This wasn’t technically a lie, because I felt bad about missing my show. At least that’s how I justified it.
And Mom was talented at taking care of me. She loved being a stay-at-home mother, and I think she missed my brother and I when we went to school. On my “sick” days, she made me a comfortable set-up on the couch, cooked a mean grilled cheese and soup, and pampered me as if I were a royal princess.
~
When Jax was seven, he began to suffer from migraines. About once a week, he came home from school with his eyes hooded and his usual high energy absent. “My head hurts,” he’d say, and then run to the restroom to vomit. I’d give him a cool rag and some Tylenol, and he’d lie on the couch and take a nap.
It grieved me to see him suffer like that at such a young age. Back then, all I wanted was to make Jax better. I still do.
I remember entering the waiting area of a local imaging center with him during that time. He was the youngest person there, by far.
After we signed in and sat down, he asked to borrow my phone to play a game. I handed it over, asking him, “Nervous?”
“No,” he said, tapping on the device. Then he looked up at me. “But it won’t hurt?”
“Not a bit,” I said. “It’s just loud.”
He nodded and turned his attention back to the game. When Jax’s turn came, I was allowed to stay in the MRI room while he heard instructions and got settled.
“I’ll be right outside,” I said when the attendant told me it was time to leave. Jax looked so small and frail beside the big white machine. For what seemed like hours but was probably less than thirty minutes, I impatiently thumbed expired magazines in a chair outside.
Thankfully, those images determined that Jax didn’t have a brain tumor, and his pediatrician recommended allergy shots and pills, which took his migraines down from once a week to once a month or less. In addition, the pre-regime bloodwork showed that he had evidently contracted mononucleosis sometime that year. He had often mentioned being tired and achy, but I chalked it up to growing pains, thinking he was exaggerating and wanting to miss school.
Looking back on that experience now, I wonder if the mono is a piece of the puzzle we’re trying to solve.
~
The sickest I’ve ever been was during a bout of mono when I was 24, and since then, I’ve never felt the same, energy-wise. Years of doctors dismissing me and handing me prescriptions for anti-depressants instead of taking me seriously have led me to learn all I can about my own health and be my own advocate.
I’m turning 50 this week (and have the AARP mail to prove it). Currently, I have an endocrinologist for Hashimoto’s thyroid disorder and a rheumatologist for Fibromyalgia. I’ve also been living with back pain since my teenage years, and a car wreck in my senior year of college led to neck surgery ten years ago. So I’ve been suffering from chronic pain and fatigue for most of my adult life, and I wouldn’t wish it on someone I despise—let alone one of my children.
This morning as I got ready for work, my legs, head, and back had been throbbing for hours. Clearly, my body was not responding to the over-the-counter pain relievers I’d taken. A catch-22 of when my conditions flare up: if I take the medicines which help the most, they make me sleepy and fuzzy-headed. I ingest the high-powered meds only before bed or during the day if I don’t have to drive (which is rare) or do anything that takes brainpower (also rare).
Today, I needed to work on an upcoming fundraising event, so I drank extra coffee and gritted my way through the day. On other days, the pain wins and I down my pills, watch Netflix, and nap.
Carey is understanding and helpful, and his job provides our family’s health insurance. I know I’m privileged in many ways, and I now have a stellar team of physicians. I’ve also found an anti-inflammatory diet and supplements which keep me on more of an even keel than in the past. Still, on certain days, my body won’t be ignored.
~
As we pull into the Starbucks drive-through lane, I pat Jax’s ripped jeans-clad leg and say, “I’m sorry you aren’t feeling good. What’s the pain level today, between one and ten?”
“I don’t know,” he says. “I hurt all the time, so it’s hard to do that scale thing.” I’ve said much the same thing to my husband before.
The barista takes our order over the intercom, and I swat away angry thoughts beamed towards Heaven, telling myself I will deal with those later. “I do wish that I could make it all better and take away the pain.”
“Thanks,” he replies. Then he pauses. “Do you think I have something like you?”
What I want to say: “I hope not.” What I say instead: “I don’t know, buddy. But we’re doing everything we can to find the answers.”
He looks out the window. “If I do, maybe Morgan will stop teasing me about missing school and work a lot.”
I unclench one hand at a time from around the steering wheel. Part of me wants to deck Jax’s best friend, Morgan, but I know his family is almost always healthy and don’t even have a regular doctor.
“He doesn’t understand,” I respond. “His family hasn’t been there— and if you do have something like me, then we’ll deal with it together. I’ll know a lot of ways to help you—things I’ve learned.”
He nods. “Okay.”
I pull up to the window, pay for our drinks and hand his over. "Thanks," he says. “Maybe I’m just a wimp.”
“You’re not a wimp,” I say, breathing in deep as I pull into a parking space. Putting the car into park, I shift myself so I can look right at him. “Seriously. You’re not. You hear me?"
He nods.
~
I’ve caught myself thinking that Jax’s health problems are something I share with him, and I’m grateful for what little commonality we have these days. Of course, I feel immediately guilty after that idea crosses my mind.
When I sleep, I have a dream which haunts me: Carey and I are speaking at a marriage retreat held at a conference center, something we are occasionally invited to do, but we’ve lost Jax. After taking a nap in our room, we awake to find he isn’t there. Panicky, we start to search the property. In this part of my dream, he is a toddler and I’m scared for his safety. However, when we find him in one of the playgrounds around the center, he’s morphed into a handsome young man. “Hey, mom,” he calls out. He is surrounded by children of different ages and a couple of teenagers. “These guys needed help leading some kids’ activities,” he says, pointing to the teenagers. “So, I volunteered.”
~
Jax has a girlfriend named Madeline. She’s truly lovely: polite, cute, laidback, and sweet. The two of them like to watch “Brooklyn 99” or listen to music, and since neither of them can drive, they either spend time at one of their houses, walk somewhere, or get dropped off at Chili’s.
Since Jax’s older brother Jordan hasn’t dated much yet, I haven’t had the chance to go through the whole “my son has another woman in his life” transition until now, and I’m having a hard time with it. Truly, the first time I saw Madeline lean her head on Jax’s shoulder while they were holding hands, I felt a sudden, primal urge to yank her away from him and accidentally scratch her with my fingernails. The depth of my emotions surprised me. It was as if a huge mama grizzly bear lay dormant inside me, ready to be awakened at any sign my cub might be taken away from me.
Over the holidays, we visited out-of-town family. Several times at both my parents’ house and my in-laws’, Jax sat on my lap—all 160 pounds of him. Though my thighs went numb after a minute, I didn’t make him get off for a long time.
As essayist Mia Freedman wrote, “Your son growing up will feel like the slowest break up you've ever known…while we know they love us, their lives no longer spin around their mother as their main axis. We are not the sun around which they spin. Not anymore. It would be weird if we were. I know that. Logically.”
I read that essay over and over because it makes me feel less alone. Sure, I’m happy my son is happy—but Jax now inhabits a planet with Madeline, not me. I get invited for quick visits, but I don’t get to stay. Though our Starbucks trips and common physical challenges keep us connected, I can’t help but feel left out.
However, he has surprised us over the past year with his newfound discipline about music (he’s taught himself several instruments and now plays in two bands), his job, and school. He’s mostly kept a sunny disposition even though his pain is consistent and often severe. Yesterday, he got into his dad’s car after school and said, “I ate a tube of lip balm today at lunch for $10.”
Carey laughed and shrugged, which is why he’s the favorite parent. I don’t know whether to be more horrified or proud of my son's creativity, since we’ve told him he has to save a certain amount before we’ll help him buy a car.
My heart wants him to keep his carefree spirit and not have to endure unrelenting pain.
I talked to his doctor yesterday, and he told me that nothing showed up on Jax’s latest MRI (he’s had three now). It looks like the neurologist will be referring us to a pain management physician at the children’s hospital.
~
Not him too, I plead towards Heaven.
At the moment, God and I are in the middle of a stare-off. I can feel him asking me to trust, but I’m being stubborn. It’s easier to not worry and accept hardships when it’s about me. But when it’s about my kids? That’s another level of surrender altogether.
The Bible teaches that the trials we go through develop perseverance, which develops character. I’ve found that to be true, but it really, really makes things difficult.
Shouldn’t there be an easier way to build character? I want a shortcut, at least for my children. No, scratch that: I want a shortcut for me.
~
“Don’t forget your appointment next week with Dr. Giroula,” I say to Jax, sipping my matcha latte and pulling back onto the road in front of Starbucks.
“What day again?”
“Thursday at 2. He’ll talk to us about the next steps, probably the pain management team.”
Jax sighs, his upper lip covered in whipped cream. “That’s stupid.”
I pause, translating teen-boy-speak. “You don’t think it will help?”
“Maybe. Maybe not.”
I take his left hand with my right. “I know we wanted a simpler answer, with a quick fix.”
“Yeah,” he says.
Gently, I squeeze his hand. “I’m sorry, and I get it.”
He looks at me. “I know.”
Dena Dyer loves Jesus, her family, all things literary, coffee, and British television. She’s an author of ten books and hundreds of articles and essays. Her credits include Incourage, Christianity Today, Writer’s Digest, The Writer, and Proverbs 31. She and Carey, her spouse of 26 years, live in Texas. They have two young adult sons and a rescue dog, Sully.