To the Gates of Hell

My story of trying to fix debilitating chronic pain via Western medicine

You’ve probably seen it before. Your friend is a broken wreck, they can’t work, their life is steadily plummeting towards the abyss. They get diagnosed with fibromyalgia, CPTSD, hypermobility/EDS, or early onset arthritis. You give up hope they’ll ever be normal.

Then all of the sudden, out of seemingly nowhere, they start drinking celery juice every day and all their problems disappear! (This one actually happened to my mom, bless her heart.)

Or they go gluten-free. Or find Jesus. Or see a $500/hr chiropractor who’s written a book about ghosts. Whatever it is, it "fixes" them.

You roll your eyes. But also… you kind of want it to be true. Because maybe you’ll finally get to stop listening to them complain. Maybe, just maybe, the cloud of misery around them that has slowly pushed away you and everyone else in their life is finally parting, and you’ll get to see them be happy for the first time in years.

Modern chronic pain causes an incredible amount of misery. The typical cited prevalence of chronic pain is somewhere around 50 million people in the U.S. daily experiencing at least some pain.

Now when you think of someone with chronic pain, you probably picture an old mill worker with a bad back, or hips, or knees. Perhaps all three.

But chronic pain doesn’t just hit the old, the worn down, the obviously crippled. There are also people like me, not so long ago. A 23-year-old man sobbing silently as his tongue goes numb, his jaw locks, and he tries to decide whether or not to call 911 for the third time that month.

That kind of moment where you stare death in the face is characteristic of what the medical field calls “high-impact” chronic pain. The dry description of “daily activities are significantly limited” doesn’t quite capture how it feels from the inside.

When you look at these stats and medical phrases, it’s easy to distance yourself emotionally. But if you’ll allow me, dear reader, I want to give you a bit of an inside look into what it’s like to go through crushing, daily, seemingly inescapable pain.

How all of your worst fears seemingly become realized.

You stare down decades of living as a cripple.

When your own body betrays you constantly, forcing you to go from a bright energetic youth to a shuffling old man over the course of a couple of years.

How you think you’ve finally found a cure, only to have the hope cruelly ripped out of your weak grasp over, and over. And over.

Hopefully, this inside look can help you understand and sympathize with those unfortunates who, like me, have dealt with the hell we so clinically call “chronic pain.”

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23 Years Young, Staring Death in the Face

Sitting on the bed at my mom’s house, at 3 o’clock in the afternoon, the soft afternoon sunlight streamed through the window. At the age of 23, I thought I was about to die.

My tongue burned all down the left side, then promptly went numb. It felt like a snake had lodged itself in my throat all of the sudden, and started to swell. The muscles along my jaw bunched, locked and then started to spasm. I fought for breath.

Rushing in after hearing some of the noises I was making, my mother panicked and asked if we needed to go to the E.R. I told her no, by shaking my head of course. I wasn’t capable of speech at this point.

You see, I had already been to the E.R. once for something similar, just a few months ago. They made me wait for hours, spent five minutes looking at me, told me I was ‘normal’ and then pushed me out, charging me close to $1,000 for the pleasure. Would’ve been five times more if I had called an ambulance. It was not covered by my insurance via work at the time, of course.

Then I had gone to urgent care a few times. Similar story. At least those docs gave me some drugs, to try and make me feel better.

So I told my mom no, and got up and decided to walk with her. In my head, though I was convinced that the reaper stalked behind me, about to pounce, I wanted to see the sunlight one last time. We opened the door and strolled through the afternoon sunshine. Oh, the light was so beautiful. It brought tears to my eyes. At the time I still subscribed to a sort of half-hearted atheism, but if I had believed in God I likely would’ve dropped to my knees and sung out His praise.

I’ve done that a few times between then and now.

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Talking shit till I get lockjaw

A$AP Rocky has some good lyrics, okay?

Rewinding a bit, my official diagnosis for the numb tongue and the locking jaw was TMJ, or temporomandibular joint dysfunction. It began a few months after my first job out of college, a stressful, boiler-room-esque sales job where we were expected to make close to 100 ‘touches’ (calls/emails) a day to potential customers. Not horrible, as far as volume of entry level sales goes, but horrible enough to break me.

The first time I felt any issue, I thought someone had hit me in the head, or something. A lightning bolt of pain shot across my face, and a good proportion of the muscles from the side of my lip up to my right eye went numb. I was on a sales call at the time! To my credit (perhaps) I finished the call, though slurring a bit, called my manager, and told him I was taking the rest of the day off.

I had dealt with some chronic pain previously, mainly in my sciatica nerve down the side of my leg. That one, I thought, was easier to explain though. I had been doing hardcore ballroom dance competitions, it came on over a period of time, and I must have overstressed the leg. This time was different - a bolt out of the blue in a completely near area of my body, that had never felt any pain like this before.

That episode started the first of my four FMLA leave periods from sales jobs, in a five year span. While I do complain about the Western medical system, I have to admit the Family Medical Leave Act is pretty amazing. It gave me a lot of flexibility when I needed it most.

So, what do you do when a random, major illness strikes you out of nowhere? Call the doctor, of course! So I did. I went to my primary care doctor. They referred me to a TMJ specialist at a big, national name hospital nearby. Of course, all of this took over a month, since every new specialist takes between 2 and 6 weeks to even get the first appointment with.

It was during this waiting period that the drama above unfolded.

Anyway, this doctor saw me a couple of times, warned that I may need surgery and may never heal, and sent me off to a dentist who specialized in TMJ. One of the handful in the country, who happened to be in this medical system that my insurance actually did cover.

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Side note: It’s completely insane how many doctors will just off-handedly tell you that you may need surgery, and/or that you’ll have to live with something forever. I would be told that at least a dozen times throughout my medical journey.

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I was one of the lucky ones, despite the difficulty. So far I was in only a few hundred bucks, chump change.

So I saw this dentist who specialized in TMJ. He calmed me down, told me that things would be ok. That he had dealt with cases as severe as mine plenty of times, and no I wouldn’t need surgery. He molded a night guard for me to sleep with to stop me clenching my jaw all night, sent me to a specialized TMJ physical therapist (who cost $150 per session, uncovered by insurance) and prescribed me a benzodiazepam. Klonopin, to be specific.

Now, all of these treatments together actually worked quite well! I wasn’t back to 100%, but I was able to go back to work in a few weeks, and get rid of the impending sense of doom that whispered that I was going to die, or never be able to talk or eat again. The Klonipin caused me some… other problems, but that’s a story for another post.

Sadly, the TMJ was only the beginning of my story with chronic pain.

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The Carpal Tunnel of Love

Great song, by the way. Some of Fall Out Boy’s best.

After my first successful foray into getting medical treatment for my issues, I returned to work somewhat hesitantly, but things seemingly turned around for me. My focus and drive returned, even leading to me getting promoted after another few months in the job.

However, about a year after having to take leave for TMJ, I found myself forced to quit the working world once again.

The next problematic area was my hands and wrists. When I say problematic, I don’t mean the next painful area. At this point I had already started to develop tons of pain in my low back, hips, and legs as well; despite all the physical therapy, working out, and yoga I was doing. It got to the point where they started calling me the “old man” around my office, despite the fact that I was in my early 20s.

Either way, the combined stress of a high-pressure laptop job and me gaming a ton, led to my wrists basically completely blowing out next. I pushed through the pain for a while, but ultimately had to call it. Another dramatic discussion with my bosses about taking leave, this one FAR less friendly. Luckily however, they were legally obliged to let me take more FMLA, as a year had passed since my last medical leave.

So off I went, back to stay at home for a month, stress about doctor’s appointments, and generally just convalesce. I didn’t handle this period of time off work as well as the last. My strategy to cope with the pain had increasingly become mixing my anti anxieties with alcohol and cannabis in order to basically numb myself out of whatever I was feeling at any given moment. As the reader likely knows, that strategy doesn’t pan out well in the long run.

Anyway, I had continued working with my physical therapist this entire time, despite racking up a bill of thousands of dollars with him in over a year of weekly treatments, so I got him to give me some referrals to carpal tunnel docs.

Same old shtick. Took forever to get an appointment. When I did, they told me I would likely need surgery, and sent me off to another specialist. One of them spent months trying to prescribe me mild muscle relaxant type drugs like cyclobenzaprine, gabapentin, or flexeril, which are weak beer when you’re in so much pain you can barely lift a glass of water to your mouth with both hands.

I started to get all sorts of fancy diagnoses at this point. Early onset arthritis. Fibromyalgia. Hypermobility (EDS). CPTSD. Et cetera.

My FMLA leave quickly got eaten up, so I had to go back to work. I started using a program called Talon Voice in order to control my computer almost entirely via my dulcet tones. It was actually really cool, my friends even started calling me a cyborg for a minute there. I got an eye tracker to move my mouse and everything, like a real disabled person!

People can even code with this software, it’s wild:

Via a combination of wrist braces, new drugs, quitting all video games and recreational use of my hands (listened to a lot of audio books), I slowly managed to get back to a ‘functional’ place with my job. Of course, none of this would’ve been possible without the patient and loving support of my girlfriend, to whom I owe an incredible amount for sticking with me through these difficulties. I shudder to think what would’ve happened if I didn’t have her by my side.

Either way, at this point I was several thousand dollars down the drain, and still partially crippled. Unfortunately, life wasn’t done with me yet.

The Sound of Silence

Hello darkness, my old friend…

When I first lost my voice, I like to think my girlfriend was secretly relieved. I do talk a lot, after all!

At first I thought I just had bronchitis or something, so I took a few days off of work to just let my voice recover. Surely it’s just a bug, right? Though in the back of my head, fear was rising that something even worse was coming for my already fractured health.

So I went back to work after my voice had recovered and, lo and behold, after just a couple days on the job, the voice went again. By this time I knew the drill, so I immediately researched the most well-regarded vocal therapist in the area, and scheduled an appointment.

Of course, it took multiple weeks to even see her, so I had to go on FMLA leave again. At this point I was starting to seriously eat into my savings I had carefully built up. Have I mentioned that FMLA leave is unpaid?

Regardless, given that my computer use had switched over almost entirely to voice, and I was still talking for my sales job, I suppose losing my voice was inevitable. At the time though, the defeat was crushing. First my legs hurt, then my jaw, my hands, and now my ability to even communicate with other human beings. What would God take away from me next?

I sunk into a pretty deep pit of despair at this point. I had struggled with suicidal thoughts as a teenager, but it’s a different animal contemplating suicide past 25 due to medical complications that multiple doctors have told you are essentially incurable. Admittedly, the drugs and booze probably didn’t help.

So I went to the vocal coach, added another set of tasks to my daily exercises to manage my various conditions, which at this point had ballooned to over two hours a day of stretching, doing vocal warm ups, doing specific exercises, self-massage via tennis ball, and resting in various positions to take the stress out of certain muscles.

At one point during this time, at the advice of my vocal coach, I completely stopped talking for two weeks. The idea was we could perhaps “reset” my vocal cords, and help me learn to speak in a more “natural” way. At first, this was brutal. I had always been quite chatty, and the silence was agonizing the first few days.

But after about a week of no talking, something strange started to happen. For the first time in a LONG time, I didn’t feel quite so hopeless. I couldn’t have explained it to you at the time (because I was silent, duh! ;P), yet I just started to get this sense of silliness. That even though my body was falling apart before my 30th birthday, my relationship was on the rocks because I couldn’t even talk to my girlfriend, and my managers were looking for excuses to fire me, there was a sort of… underlying okayness to the whole thing. I was able to laugh, and relax, despite my circumstances.

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The Gates of Repentance

This priest has the best voice ever, seriously. Check out this chant, it’s amazing.

A little before the voice loss I had stumbled upon some people in the Talon Voice community talking about chronic pain being a spiritual/emotional issue. Up until now, I had sort of brushed this off while thinking eh, even if this is an emotional issue, how am I going to fix my emotions? I was already doing therapy as well and that barely helped.

So there I was, over $15,000 and years of my life spent on medical treatments that amounted to temporary bandaids at best, with little to no understanding of the deeper roots of my chronic pain, or how I was going to fix it. I had some inkling that maybe there was an emotional or spiritual issue, but I barely took it seriously. From a ‘logical’ perspective, things seemed quite bleak.

Something in the silence spoke to me, though. Despite my utter lack of belief in anything beyond the material, physical reality, I began to feel as if a presence was watching over me. I didn’t know it at the time, but looking back, it’s obvious to me that it was Christ reaching out, now that my heart had finally been humbled enough to hear Him.

Thomas Merton says:

In silence, God ceases to be an object and becomes an experience.

Perhaps he’s right.

While it would take a while for my heart to fully turn around, the bitterness that had consumed me slowly started to lift. Possibilities began to open up, doors opening that had seemed firmly shut. Before I began to believe in Christ, or even the supernatural, I started to believe in myself. In Life. From seemingly out of nowhere, a hope blossomed in my chest. A hope that I wouldn’t be a cripple, that I’d get to live a good life, despite my troubles, that somehow, some way, I would be able to overcome the various illnesses that had plagued me from my youth.

Glory be to God, that hope has been fulfilled. That’s a story for another time.