Part of me doesn’t want to tell my sob stories. Stories of tragedy are a dime a dozen via electronics in the Information Age, so much so that our empathy engines seem to overheat and stall sometimes for pretty good reason. We just can’t digest anymore sad-bad stuff. But there’s still something to telling a true story, I hope, to being known and attempting to know, to being human and sharing it. I’ll put my drop in that bucket today.

For me, this sob story–Trigeminal Neuralgia or TN–ties for third out of my eight most challenging ailments during adult life. TN, for those unfamiliar (most people, I assume, since this pain affects only .000125% of the population), is nicknamed The Suicide Disease. So for me, the suicide temptress ranks third or so. Suicide alert. Third-ish. (Don’t cue the violins. This point is just crucial to my next one.)

When this is your story (recap: suicide watch is only third worst), even the Cliff Notes version tends to send people running for the hills. So, even those I know and love best will probably be surprised today, because I’ve rarely told the full story. I’ve found there’s a threshold to every relationship’s ability to conversate about pain without imploding. “Hey, you wanna have lunch and talk about that suicide disease thingy again for the fiftieth time, since I’ve been in pain every single second since I’ve known you? And then we’ll move on to challenges ranking #1 and #2, since they’ve been happening simultaneously, like, since I’ve known you? You do? Great! Be there with bells on!” These are sentences spoken by no one ever.

If I sound self-pitying, hold the horses. I only mean to acknowledge the validity of everyone’s varying abilities to focus on what hurts. Debby Downer challenges us all for good reason. Nobody wants negativity all the time. And we do sometimes have trouble distinguishing between when the negative thing coming at us is a God’s honest, unfortunate circumstance over which someone has no choice (deserves real compassion) versus a pessimistic attitude chosen perpetually over manufactured crises (which idiot compassion enables). At any rate, I understand limits in capacity to hear about pain.

So, what do you do when you want to respect others’ pain tolerance but your own threshold is constantly surpassed to the point of bursting? What if speaking of it for ten minutes each day feels like chronically droning on to someone near you, but you’re expressing only a tiny fraction of your experience? What then? You try to be the best darn person you can be despite, not lay all of your burden on everyone around you and respect any inability of anyone to listen or respond. Even the encouragement champs (and I’ve met a few empathy heroes) have to endure their own stuff as well. So, you remember your pain is ultimately yours to carry. Help is great, but the buck stops with you. You try to strike a balance in communication that favors the other person’s well-being. In essence, you make peace with being partially known, by everyone but your Maker.

Anyway, I won’t even tell you what caused my (TN) damaged nerve to start screaming “I hate you!” at my face, because you won’t want to go to the dentist ever again. And more often than not, I’m pro dental hygiene.

So, let’s just go straight to the technicalities: “The trigeminal nerve is a mixed cranial nerve responsible for sensory data such as tactition (pressure), thermoception (temperature), and nociception (pain) originating from the face above the jawline ….” (Source: Wikipedia. I know, I know, but it’s good enough for our purposes today.) Basically, it’s a multi-pronged nerve that runs through the side of the face from the brain.

They say “typical” attacks of TN pain are intense and shorter and “atypical” attacks are less intense and constant. Overachiever that I am, I went ahead and combined the two into constant, intense pain. For several years, I rarely found a solitary hour without increasingly murderous pain on the left side of my face. To attempt (and fail) to describe the sensation, it’s stabbing, burning, crushing, shooting, like Mike Tyson giving you endless right hooks. It’s mostly that last thing.

Imagine, for example, someone puts a vice grip around both your cheeks and squeezes, hard. Then someone puts a vice grip on your eyeball and squeezes, hardest (gross, sorry). Then someone puts an electrically conductive vice grip on your chin and top of your head, squeezes only hard-ish but then plugs you in. It’s hard to see (partly because having your eye open is excruciating). Chewing hurts (the baby food month of the journey was particularly interesting). Talking hurts. Hair touching the cheek hurts. The wind can hurt. Sitting and staring dumbly at the wall can hurt. You get it. Enough of that.

To be fair, because I’ve taken a solemn vow to never exaggerate woes on my blog, once in a while steroids did take the edge off for short reprieves. (But, then I started bruising endlessly and having allergic reactions to them and had to stop them suddenly without weaning, going into withdrawal and a sort of shock, under which circumstances I flew to a destination wedding and got married, visibly shaking. But that’s a whole ‘nother day’s tale.) OK, fair disclaimer to thwart exaggeration rendered.

I saw fifteen dental professionals who tried to solve the problem the way it was caused, i.e. by doing nine more oral surgeries on or around two “bad teeth.” These were to my TN detriment, because they never diagnosed me correctly and were treating the wrong thing, doing woeful damage to my jaw and neck vertebrae all the while also (which caused aforementioned problem #2 and years of virtual muteness. But again, that’s a story for a different day.)

So, of course, I did the appalling thing and diagnosed myself using the internet and then scheduled an appointment with a neurologist, who confirmed it. I have on good authority this was appalling, because my last oral surgeon said, “It’s appalling to diagnose yourself using the internet. The diagnosis can’t be right, because you smile too much and people with this illness have guns to their heads.” (Great word picture, doc. But maybe next time go with, “My, you’re handling this challenge awfully well. Good job.”)

The most effective treatment is occasionally-semi-successful, chalk-full-of-side-effects anti-seizure drugs for life. There’s also surgery. I’ve heard nothing good about splicing and dicing nerves to the brain. Maybe that will change. Maybe it’ll be perfected. But for those who know me, you can see my answer to ’em coming: “Um, no, bye, thanks, no thanks, bye bye. I won’t let the door hit me ….” I was also trying to get pregnant. Anti-seizure meds almost offer a written guarantee for birth defects. So I defected saying, we’re doing this another way (I could fairly refer to us in the plural at that point, my trigeminal nerve and I, since it had declared full independence from cooperating with my face). Another way it is.

What way? Nobody has a way. All these professionals can’t find a way. Please professionals, find a better way. I’m just me. I have an accounting degree. Blood makes me pass out. I’m not a brain surgeon. Is it too late to become a brain surgeon? I’m only 27. Wait. Brain guts would make me pass out. What is going on here? There’s no other way.

So, here, fourteen years later, is where maybe I get to make an important point in keeping with what I promised this blog would be. To see the promise, go to my post “Spoiler Alert (An Introduction to My Blog).” Here’s where I get to redeem this particular pain.

There’s always another way. There’s never no way. Choose the way that doesn’t make you feel like you’ve just received a soul-crushing death sentence along with all your dreams. Go that direction.

My chiropractor listens to The Healer–to whom I’d been praying incessantly–and was bold enough to suggest I go against all the previous advice. The little-h healers couldn’t compete. This doctor who cracks my neck cracked the code to stopping the maddening downward spiral. (Thank you, Dr. Chris Turnpaugh.) But the damage was done, and it would take another year or so to calm the nerve down to only occasional pain.

And there it stays to this day. When it’s bad, it’s bad. (Shall we review the vice grips and electrical outlets?) But it sometimes responds to ibuprofin now, and when it’s gone–the majority of the time–it’s gone, except for a constant sense of vague numbness that I can usually ignore. It does distort my eye and half my face just enough, especially when I smile. I can almost forget it most days until I see a picture of myself or put on make-up, then the micro (to others) differences jump out at me. They’re subtle reminders of pain and pain conquered, mostly. (I still mourn my now less symmetrical face sometimes. Women.)

Do I know exactly why The Suicide Disease doesn’t torment me anymore quite like so many others? I don’t exactly, but sort of. Though telling you exactly how to lick it isn’t my most important point, I can tell you that nature-made, unadulterated food heals. Music and meditation heal. Cranio-sacral therapy heals (when Ms. Beth Shover does it, anyway). Acupuncture and qigong heal. Chiropractic neurology, reflexology and massage therapy heal. Nutrition supplements heal (not all, buyer beware). Love heals. The Healer heals.

Ask The Healer, and then follow directions and do the work, whether you have this problem (chances are slim) or another one. You’ll likely have to spend money you’re not sure you have. You’ll have to show up to many appointments. You’ll have to be open-minded. You’ll have to get over thinking someone owes you the succinct answer on a silver platter and that insurance will pay for it. You’ll have to accept that there are good doctors and poor doctors, meaning you have to engage your mind and intuition and practice the word no when you’d rather stick your head in the sand and submit (because the lie that it’s easier to just go along to get along is insidious).

And then you’ll have life again. One way or another, here or in the hereafter, there’s always a way. Don’t throw in the towel easily (use it to Epsom salt soak your poor face instead). With a disease known for taking its victims prematurely, I’m feeling pretty lucky to have been bullheaded enough to pursue another way right here. Your chance at stubbornness is right here, too.

With Hope and Heart in Hand,
Carolyn

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