Chronic Pain

What 25 years of nonstop pain does to you

I don’t know who I am anymore.

Image by Gerd Altmann from Pixabay

I go to bed in excruciating pain. It takes hours to fall asleep, because sleep depends on being comfortable, and my body resists relaxation.

I wake up in excruciating pain before I’ve moved a single muscle. After hours of restlessness, at some point I finally settle. But now I become too still for too long. So by morning, the pervasive pain is joined by stiffness a few notches shy of rigor mortis.

I spend every waking moment in excruciating pain. All day, every day. Where does it hurt? All over. Muscle pain, joint pain, nerve pain, tendon and connective tissue pain. You name it, it probably aches, cramps, stabs, stings, pinches, spasms, or burns.

And it only ever gets worse.

This has been my everyday for over 25 years.

Now, it hurts just being alive.

Let’s back up. Hi, I’m a medical mystery.

I’m a complicated puzzle that not a doctor alive can solve. Some docs genuinely want to help me, but lack the time or resources. Others do what they can, but eventually exhaust their expertise and have nothing further to offer.

Over the years I’ve seen a horde of doctors, PAs, specialists, and surgeons who’ve collectively assigned me a list of conditions as long as my arm — and all of them maddeningly vague. The problems seem to multiply, constantly giving birth to weird new symptoms and conditions, with no end in sight.

The pain is the problem.

I can’t describe all of the ways my body hurts. There’s too much of it to itemize.

One of the disorders ravaging my body has the curious side effect of making my nerve endings hyperactive. Reams of data about the sensations that every square inch of my body is feeling crush my brainpower 24 hours a day. It’s an ear-splitting clamor of cranked-up-to-eleven bodily pandemonium that never stops.

It’s every bit as exhausting as it sounds. It doesn’t just destroy you. It demoralizes you. It breaks you down, bit by bit, carving away at your very soul. It slowly extinguishes every little thing that makes you you.

Everything I was ever good at has been locked away behind doors of pain and confusion. In conversation, I strain to come up with the simplest of words. Names, dates, and events are blurry, like redacted words on a classified document. I give chase to concentration and focus, but I’m running in slow motion and they’re narrowly out of reach.

Some of my defining traits are gone. It terrifies me that they may be gone forever.

It affects a lot more than me.

Here’s something most people don’t know: I’m legally disabled. I don’t usually look it, but appearances are lies. Empty facades. Nobody can honestly claim that they don’t strive to look or act or be perceived a certain way by those around them — and that the desired perception lines up with the truth of who they are within.

I have one, maybe two good hours in me each day when I’m able to do stuff — be up and about, my body more or less obeying my commands. The rest of the time, no matter how normal I look to the naked eye, my brain and body have crashed and burned and checked out.

Thank God I’m blessed to have an understanding support system. I have an incredible, beautiful wife and two awesome kids who deserve so much more than I can give them. The truth is, I’m rarely available for them, or for their emotional needs. All they ever get is a pale reflection of the man I used to be. The stability they need? The support? The guiding hand? The stalwart example of strength, coupled with tenderhearted, unconditional love?

File not found.

They can’t access me because I’m locked inside a bubble of painful, oppressive sensory overload that I can’t hear or see out of without intense concentration.

So the physical pain and exhaustion feed into emotional turmoil and guilt — so much guilt — over all the things I can’t do, and it builds into this big, ugly storm that fuels itself in a vicious cycle.

Rinse and repeat for two and a half decades.

The science is undeniable.

For years, I had a decent handle on my condition. Chronic pain sucked, but I managed. I refused to let the hand I was dealt become my identity. I had passion and a purpose, and I would not be defeated.

Then about eight years ago, everything changed. The pain grew day-over-day, and a host of additional problems slowly popped up. Difficulty breathing. Vision and hearing problems. An entire list of gastrointestinal issues. Tremors. Inflammation throughout my body, both systemic and now turning its focus on individual organs.

Tip of the iceberg.

Neither I nor my doctors know what to do about any of it. This would be overwhelming already, but the chronic pain tips the balance, overstuffing my rucksack until it’s too heavy to carry.

Aside from the psychological effects, studies show that prolonged chronic pain alters the physical structure of the brain. It causes a breakdown in communication between brain cells and receptors, which can modify the very shape of your brain. Among other things, this handicaps your ability to process emotions, and can transform your baseline personality. In extreme scenarios, it can cause memory impairment and put you at higher risk of developing dementia.

The implications are glaring: The human body is not built to tolerate intense pain for decades on end — not without dire consequences.

So here are the questions I ponder daily: How much worse must the pain get before I crack? At what point do I become an actual raving lunatic who does weird stuff because the voices told me to? How many more years of this until I’m not me anymore?

Photo by Usman Yousaf on Unsplash

I don’t want to be angry all the time… but I am.

Imagine the neighbors throw the party of the century, and hundreds of people show up. There’s a DJ cranking techno music, and it’s loud and nonstop. Helicopter-hovering-over-your-house kind of loud. A deafening roar that’s drowning out absolutely everything. Your whole life is overpowered by the noise, every little thing you do, right down to your ability to think.

I live at that party. Everything is taking a raucous beating 24/7 — including my capacity for hope. It leaves me precious little ability to feel anything but a primal, medieval brand of anger. No one knows the full extent of how much I’m holding back.

I can’t overstate this, because it’s one of the most crucial results of 25 years of pain: I’m not cross, or irritated, or in a mood. I’m one moment away from an explosion of shocking ferocity, aimed at no one and everyone, that I cannot control.

Why? For starters, the pain has drained me, leaving a profound deficit of hope.

That’s a remarkably awful thing to say given the countless blessings I’ve received in my life. I’m a middle aged Christian man whose mind was stuffed with biblical knowledge and spiritual wisdom from the start. And I have benefited from God’s grace and the kindness and generosity of others more times than I can count.

Please understand that this is not about gratitude, or a lack thereof. This is about me not just hitting the wall representing how much I can withstand, so much as slamming violently into it. Maybe even through it.

I’ve been swatting down this pain for decades, pushing through it on will power. But it’s grown too big, stolen too much of my strength. I can’t slap a happy face sticker on it anymore.

I know this anger isn’t reasonable. It may offend you. It’s not proper. It’s not very Christian, and it doesn’t measure up to responsible adult standards.

But I’m choking on it with every breath, every step, every movement of every muscle.

So what do I do? This can’t be my life now, can it? I can’t feel like this, and be this useless, until the end of the road. I can’t.

I need to know that better days are ahead. I need hope. Will I one day move past this? Will I find joy and peace once more?

Or is it too late? Have I sustained too much permanent damage to ever feel like myself again?

All I can tell you is that God’s silence is devastating.

The man in the mirror is a stranger.

What’s wrong with me? This kind of unbridled, fuming bluster isn’t how a God-fearing man behaves. Everyone knows we believers endure with a dependable, well-polished grace.

Until recently I’ve done my duty and pressed on toward the mark, maintaining as much perspective as possible, always projecting a jovial self-awareness.

(Well, self-awareness at least.)

That’s important. When you live with chronic pain, society expects you to suffer in a very specific way. You must display dignity and bravery as you persevere, head held high. People have to see you, in public, doing a requisite amount of smiling and laughing to prove you’re able to rise above your circumstances. Above all, you must hide the truth about how you truly feel, because etiquette demands that you behave as if you experience the world no differently than anyone else.

You must never complain.

These expectations are heightened under the magnifying glass of the church, where appearances hold greater market value than anyone admits. We are more than conquerors who fight on our knees, but if today’s sermon hasn’t pushed your guilt buttons quite enough to send you running to the altar for prayer, no matter how much you may need it…

Well, such unwillingness to surrender to the prompting of the Holy Spirit can leave your witness — Christianese for your spiritual reputation — in question. Think of your “witness” as a kind of currency inside the church; the stronger your witness, the more spiritual capital you have stored up, making you a more reliable prayer warrior, and a more dependable, trustworthy servant of the church and its congregates who are in need.

Likewise, if your faith comes under public fire, it’s almost enough to bankrupt your reputation for good, which equates to evangelical excommunication. Judgment is notably easy to find inside the church, and rarely more than a sideways glance away.

So if you can’t fake your way past your pain, if you can’t cope while exuding peace, if you insist on doing your distasteful suffering out in the open instead of behind closed doors…

My goodness, what are people to think of you? You’re damaged goods, best kept a safe distance from, because you don’t care about how you appear in public — or how that reflects on your family, your friends, even your church.

Society at large brands you a whiner that nobody wants to be around because all you do is complain. Among the holier-than-thou crowd, you may even find yourself on the receiving end of condescending ridicule and laughter.

Screw that.

All of it.

After 25 years of decorum in the face of ever-worsening ailments, ineffective treatments, and complication-filled surgeries… I couldn’t care less who has an unsavory impression of me. They haven’t walked a mile, so their opinion is worth less than nothing.

I’m forced to an uncomfortable conclusion.

I’m mad at God.

There. I said it. I’m not proud of it, I don’t like the way it feels, but I can’t shake it off, and denying it would be pointless.

So then. What kind of big-headed, self-absorbed egomaniac would have the audacity to lob fury in the direction of the Almighty? I didn’t speak the universe into existence! I didn’t breathe life into dust.

Everybody knows it’s unacceptable for a created being to question his creator. It’s well documented that he doesn’t take kindly to it, either.

Yet I’m not the first human to feel this way. The Bible is full of people who became angry with God while never losing their belief in him.

It comes down to the age old problem of God’s omnipotence vs. our suffering.

The math looks like this.

Human Suffering ÷ God’s Power = Our Happiness

In other words, if God has the power to prevent terrible things from happening… shouldn’t he? Doesn’t he have a moral obligation to use his power to do good?

Spider-Man’s iconic motto is with great power comes great responsibility. It’s a moral axiom: if you have the ability to help a someone who’s suffering and you don’t, that makes you no less culpable than the person who caused the suffering in the first place. A crime of omission is still a crime.

Is it not logical, therefore, to assume that with absolute omnipotence comes a responsibility to use that power to help those in need? To prevent suffering?

These are dark questions that tug at the nature of our existence in ways that the church frowns on pursuing. Maybe I’m making you uncomfortable by posing stating then aloud. But I’m at a place where I feel that I must.

Opting to put God’s all-knowing sovereignty over my pride has been the foundational bedrock I’ve taken comfort in for most of my life. I’ve exercised faith that God has a greater plan, that his plan is far better than anything I could imagine, and that serving that plan means not every prayer can be answered the way that I want.

That was enough for then. Today I need more.

Why has God allowed the amount of suffering I’ve lived with for the last 25 years, when I know beyond a doubt that he could have healed me, or at the very least provided relief, at any time — today, a week ago, or two decades ago.

You know you want the same answers as I do, so spare me the judgment and false humility. We all suffer, and bear witness to the suffering of others. This is a much bigger question than one man’s pain.

9/11. The Titanic. Chernobyl. AIDS. Sandy Hook. Katrina. Pompeii. The Holocaust. The Covid-19 pandemic we’re living through as I write this.

If you believe in God and that he has the power of creation at his command, then you know that God could have stopped any of those tragedies from happening.

He didn’t. Why?

Whether it’s history’s greatest disasters, or one guy’s chronic pain, God always has the ability to do something, but much of the time, he actively chooses to do nothing.

Today, in the middle of my pain, I‘m having a hard time reconciling his refusal to act with 1 John 4:8.

Don’t platitude me.

I know all the stuff you want to say. I was raised on it, a diet of scripture and song and study from infancy to adulthood. Went to a Christian school from kindergarten to high school, and attended church on Sunday my whole life. I know every Bible story, I’ve heard the wisdom of the great theologians, I’ve sung all the hymns and modern worship top 40 hits. I’ve read every upbeat proverb ever plastered on a bumper sticker, t-shirt, or motivational poster.

I may have even contributed a line or two, in my day, to the lexicon of feel-good churchy slogans.

So whatever verse or worship song or C.S. Lewis quote you want to send my way… It’s a waste of time. I won’t be able to hear it over the cacaphony of this pain.

Photo by nikko macaspac on Unsplash

Anybody got a divine intervention I can borrow?

I believe miracles happen. They don’t happen by coincidence or chance. They happen by design. The God of the universe deliberately chooses to reach out his hand and modify a natural outcome.

So why does he choose to intervene for some and not others?

Is it a question of worthiness? Do I not measure up?

He’s the greatest multitasker in the history in the universe; how far down on his to-do list am I? Perhaps he’s too busy preventing nuclear wars, or keeping the mechanisms of the universe oiled and running properly, to be bothered with the likes of me — an ungrateful questioner.

Is it all a grand whim to him? An astronomical shrug from a being too big and indifferent to invest in the suffering of one who’s cosmically insignificant?

Or are my questions so insolent and audacious that their very existence guarantees that they’ll be ignored, the way a teenager so expertly exudes unspoken disinterest?

What I need is a chart that shows exactly how big faith has to be, or the number of prayers that have to be racked up, or the perfect recipe for Christlike personality traits I should maintain at all times, in order to procure a miracle. Surely someone out there has reliable measurements to go on?

Don’t mind me, just spitballing. After all these years of a status quo consisting of intense, uncompromising pain, it can be hard to care about things like the boundaries of proper reverence.

I don’t care anymore. I don’t know how to move forward without answers.

What you see is NOT what you get.

I’m a big ball of messy, jumbled emotions, so if you see me in person, I may come across as moody and erratic. I hate that that’s the impression I sometimes give. Please know that that person is not the real me. The real me is a lot more likable, I think. Funnier. Happier. Lighter, more open and caring.

The real me…

Hm. Do you suppose he’s buried under layers of pain? Or do you think he’s lost? Gone for good, replaced by this broken wreck of a human shell?

I want to believe that all of this will eventually, in the story of my life, be a challenge that led to triumph on the road to becoming the person I’m supposed to be.

But today I’m stuck in a marathon of unbearable pain that I’ve been running for over 25 years. I can’t concentrate (you wouldn’t believe how much I’ve rewritten and edited this), much less reflect and gain perspective.

What I need.

Please pray for renewal. I want to be the old me again. I don’t like this guy that’s drowning in pain so intense that it keeps him perpetually angry.

Please be patient with me. It took 25 years for the flood waters to break this dam, so it’s not going to be easy to rebuild. And I can’t even attempt that kind of architectural feat until I get some relief from the physical pain.

Please grant me grace and understanding. If I don’t perk up when our eyes meet, if I forget to smile, or if I miss something you said entirely, I beg your pardon and ask you to please not take it personally. It requires every ounce of concentration I have to hear above the din, and I lose the battle more often than I let on. If it’s any consolation: if I choose to focus on you at all, it means I value you.

Please make allowances for the things you can’t see. If I look like I might be feeling good today, I’m not. I never feel good. The “good” days are when I’m able to fake it with more proficiency than usual.

Please don’t assume your normal is my normal. I’m always pushing harder than you can imagine just to be wherever I am, doing whatever I’m doing.

And please overlook my anger. Until something changes, deep wellsprings of rage are the only source of energy I have left.

Hi. Thanks for reading! I’m Robin Parrish, and I’m the one to blame for the unconventional collection of words you just read. Read more of my hair-brained ideas right here.

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Robin Parrish

Robin Parrish

Survivor. Storyteller. Got wrecked by life; now trying to rebuild myself. There’s still so much I don’t understand.