I’m on a “recovery group” mailing list, where we discuss many different things, including life after Mormonism. I posted news of my affliction to the group. Here’s part of the posting that didn’t go up on my weblog yesterday:
How does this relate to Recovery from Mormonism? Sometimes, when I’m deep in the throes of an attack, I find myself screaming inside my head “why me, why me?” There is no answer. Occasionally I wonder if, since this occurred after my break with Mormonism, if this is God’s punishment for an unbeliever.
Yet I view the TNA [Trigeminal Neuralgia Support –MPB] web site. Many millions of people suffer this disorder. Some are almost surely faithful LDS. The logical part of my brain knows that the failure of the myelin sheath on my trigeminal nerve is a totally natural process that is simply a failure in the way the human body has evolved. Perhaps in earlier times, it was a “neutral drift” in evolution that allowed these to happen, since although it’s incapacitating, it’s not fatally so. Or, maybe, this is a result of a car accident I was in 16 years ago, which resulted in partial and temporary loss of hearing in one ear, great pain and soreness on the right side (same side!) of my head for a few days, and reduction of my height by about one inch. Who knows?
I’m on a “recovery group” mailing list, where we discuss many different things, including life after Mormonism. I posted news of my affliction to the group. Here’s part of the posting that didn’t go up on my weblog yesterday:
How does this relate to Recovery from Mormonism? Sometimes, when I’m deep in the throes of an attack, I find myself screaming inside my head “why me, why me?” There is no answer. Occasionally I wonder if, since this occurred after my break with Mormonism, if this is God’s punishment for an unbeliever.
Yet I view the TNA [Trigeminal Neuralgia Support –MPB] web site. Many millions of people suffer this disorder. Some are almost surely faithful LDS. The logical part of my brain knows that the failure of the myelin sheath on my trigeminal nerve is a totally natural process that is simply a failure in the way the human body has evolved. Perhaps in earlier times, it was a “neutral drift” in evolution that allowed these to happen, since although it’s incapacitating, it’s not fatally so. Or, maybe, this is a result of a car accident I was in 16 years ago, which resulted in partial and temporary loss of hearing in one ear, great pain and soreness on the right side (same side!) of my head for a few days, and reduction of my height by about one inch. Who knows?
Yet the primitive part of my brain still cries out for some kind of father or mother, and the safety and reassurance of not having to think inside the Church, which can make everything all right. A part of me wants the reassurance that “Perhaps this is a trial of your faith; endure to the end and you’ll be rewarded.”
Nobody can make it all right, though; we can only operate, or give me drugs, or try to help me manage my pain.
That sucks.
I received some really great responses to my posting; I’ve edited them slightly. It’s been a tremendous lift, though, to know there are rational people out there who think like me, and can help me see past my pain.
This from “Candle Magic”:
I am so sorry. It does sound like it sucks. I understand chronic pain. I have three herniated disks in my back. I use self-hypnosis for pain control, and when it is really bad, I resort to pain killers and pull the covers over my head. Even though I left the Mormon church, some of the old threats of eternal punishment comes to mind when things go wrong. Brainwashing can have lasting effects.
Best wishes and I hope you find a treatment option that will relieve your pain.
This next, from “Carol” (emphasis mine):
Matthew, I totally understand your pain. I have Glossopharyngeal Neuralgia, and the pain is often so excruciating and there is absolutely nothing that I can do for it…..pain pills won’t touch the pain…..it’s raw nerve pain and there is nothing worse and it isn’t something anyone will understand except those who suffer.
Fortunately my episodes come and go so my pain isn’t constant. I can always tell when it is going to happen because there are warning signs……I have been getting head massages (from someone who does rolfing work) when I feel it coming on and it seems to help alleviate the pain some. Good luck to you.
–Carol
I asked Carol for an explanation of her affliction:
Yeah, that’s the most maddening thing. I way overdosed on Midol, Tylenol, and Aspirin all in the same day, and none of them seemed to have *any* effect. I was totally unused to this, I mean, usually Midol cures my headaches or whatever, but that kind of medicine did absolutely zero for this.
That was really frustrating. I finally decided to do some reading online to find out what matched my symptoms. My teeth ached, you know, but it didn’t feel like “rotten tooth” or something that needed a root canal. The pain is way, way back in the jaw, and the fact it made my teeth hurt seemed like an afterhtought. I found out some common causes (TNA being the most common), lined up my symptoms, saw what matched, and I think I already knew what it was before walking in the doctor’s office. Once I described what it was, he almost immediately said it was TNA which was gratifying because I don’t think I told him what I thought it was. Go, go, Internet! Power to the people.
What medication are you on? My doc put me on Neurontin, and after using it for a day, so far there seem to be few effects except I feel really light-headed. The pain isn’t constant like it was on Saturday, and the severity of the episodes (that I can feel coming on, too — it’s weird, it’s like the small little tingle and you know it’s turning into a storm) has diminished somewhat, but I’m still hauling out my hot & cold packs regularly…
What exactly is “Glossopharyngeal”? Something to do with the pharynx?
It is another rough thing; people just don’t understand the severity of this pain. They can’t see it. I mean, my wife is really compassionate, but when I’m in the middle of an attack and just moaning in my chair, I can see in her eyes that she doesn’t understand this pain that nobody can see, and it bothers her.
Glad there’s someone on the list who understands.
This was her response:
Glossopharyngeal neuralgia is another form of occipital neuralgia, (occipital of course meaning from the neck up…there’s a web site dedicated to explaining all forms of occipital neuralgia).
My episodes begin with little twinges, and often a sore throat on one side. Before long, the sharp nerve pains begin, which can last anywhere from 3 days to 3 weeks. Swallowing soon becomes something that I dread doing……there is no rhythm nor pattern to the pain…..just that it soon takes over my whole life and there are times that I wish my life would soon end. It is so dreadful.
I have also tried Neurontin, with no success, and I don’t like the side affects. During each episode, I rant and rave and holler and cuss and say “why me?”, knowing that it happens to many others, just not many people I know. I have a pretty high tolerance for pain, but not this pain. And how do we describe it to others? It’s not possible. I hope this bout you are having leaves you soon!
This from “Kathleen”:
OMG! I am so sorry Matthew……………I had the same thought. “Oh of COURSE, he’s going to get this the minute he doesn’t believe anymore!”
What a joke!
There is an exmo [former Latter-Day Saint – Matthew] that I know of who got MS just weeks after leaving the church. His whole family believes it’s a punishment from gawd for denouncing the truth.
Matthew you KNOW that isn’t the case. You really know it with all your heart. It’s just the f’n luck of the draw.
It sounds like there is some kind of help for this down the road?????
Kathleen
My response to Kathleen:
Thanks so much for writing me back, Kathleen… my post was definitely a plea for sympathy and support in knowing this isn’t some God-given punishment for rejecting the Church.
I announced I was an atheist in August of 2002 (over a year ago.) The timing now is difficult, though, because I just recently made “the next step” — not wearing garments, not paying tithing, etc. I intend no further steps; I’m comfortable in the knowledge that I am not financially supporting an organization I don’t agree with.
But anyway, people are going to assume “dude, this is what happens when you stop paying your tithing”. Ugh. It’s that old rule of “counting the hits and ignoring the misses”; how many Mormons get debilitating diseases? How many who’ve left Mormonism are perfectly healthy?
This was just what I needed to hear! Thank you!
I’m on a drug called “Neurontin”. Turns out my neighbor, who is a non-garment-wearing but active Mormon (OK, go figure on that, but she’s a really cool gal with her head on straight that I think goes to church for the social aspect), has similar nerve problems, but in her leg, and takes the same medication. It’s wonderful to have someone face-to-face I can talk with about this.
For most people, the symptoms come and go. So I’ll be on this drug for 2-3 months, then we’ll try to see what happens when I stop using it. If symptoms recur, we try again, perhaps with a different drug (there are about six different ones to use with varying effectiveness and side effects — it really seems to depend on your body chemistry which one works). Surgery is an option, and at my age some would say the preferable option, but I’d prefer to exhaust drug alternatives before people start slicing me open and shifting my nerves around!
Thanks again for writing back, Kathleen.
And Kathleen’s response:
Well I’m so glad I could kick your ass for the morning!! :-))
I’m really glad to know there is help, and that you have support right next door. That’s great!
Hang in there bud!!
–Kathleen
“Amy” sends me her regards:
I am just a lurker on the list, but wanted to let you know I found your letter regarding Trigeminal Neuralgia of interest. My nevermo [Never Mormon — MPB] husband has suffered from this condition for years. Just recently has it been properly diagnosed and treated with medication. It has given him a new lease on life. I feel for your pain and suffering. I know that my husband went through hell with his condition.
Reading your description of what you are going through gives me an additional perspective on the condition. I am sad that I wasn’t more understanding and helpful over the past years as my husband suffered with the problem. He mostly suffered in silence, but even that got to be a drag.
Thanks again for sharing your story.
–Amy in Texas
Kaye has this to say (note that the acronym “TBM” or “tbm” stands for “True-Believing Mormon”, a term commonly used by those who have gotten out of the Church for those who are still active in the Church):
What a terrible illness! I’m sorry for you, truly.
Your feelings of “being punished for apostasy” are very much in line with mine from time to time. Although, I always am afraid that my “punishment is coming.” My fears always run in the direction of my kids being taken away from me or harmed in some way. It is irrational, but hard to shake those ingrained “boogey-men.” My tbm mom came right out and told me about a year and half ago that my father (now deceased and residing in the Celestial Kingdom) is angry with me because I am not raising my kids in the church and depriving them of the fullness of the Gospel. So, the kernel of fear that was already inside, got inflamed again by my mother who helped place it there in the first place.
I am putting together a book of exit stories (as I have mentioned form time to time.) Anyway, one of my favorites is about a man who suffered from chronic and terrible arthritis while he was a tbm. He was so sick that his wife had to help him in and out of hot baths that gave him a little comfort. His job was lost, his fortunes ruined, and this was all while asking for “healings from the brethren.” They came to his house countless times and you know what they did, right? They made it worse because he not only was in terrible agony, but he had the added guilt of thinking, “if I was just righteous enough, then the power of the Priesthood could work for me.” He went into a terrible depression, not from his illness, but from the guilt.
So, I just wanted to remind you of this – something you already knew – but maybe forget. It not only wouldn’t be better in the church, it could easily seem worse.
But, having said that, I want to just offer my condolence again. I hope you find answers and solutions that help you feel better. I know nothing about the condition you described, but I work in a hospital and will now keep my ear to the ground to find out everything I can.
Kaye
I know not everybody agrees, but online support groups are wonderful. About 80% of what passes there is just pure crap, debate, speculation, opinions, flaming, you name it. But that remaining 20% is sincere and precious, and this amazing ability to put up our own news sites, and communicate with people with common interests from around the world, and to give and receive support from them, is just wonderful.
Ten years ago, if I’d have this pain, not only was it not well-understood, it was considered largely untreatable except with some drugs with pretty horrific side effects on one’s blood. My only resource for information would have been my doctor. Today, I can find the research myself, figure out what’s wrong, and engage in dialogue with my doctor over effective treatment strategies, based on my own research.
Nobody on this planet cares as much about taking care of my body as I do.
What a noble, ennabling thing this communications medium is!
–Matthew