Keeping the sabbath holy

I’ve written much about the spiritual crisis I started about 2.5 years ago. It got dark at times. It’s largely resolved, but featured a period of faithlessness, and a careful examining of what I believe and what it means about how I should live my life.

Church has been a constant, notwithstanding a few weeks here and there. However, since moving to Albuquerque, it’s been difficult to find the right church. We scouted a bunch of places online before arriving, and thought we’d found *our* place. Their social media presence expresses concern in the same things I care about, they’re plugged into the community, all good things. However, after 2 visits, I was unable to see any men between 25-50. The kids were shushed by a deaf lady. Instrumental versions of several patriotic songs were played to celebrate 4th of July, which made my vehement dedication to separation of church and state itch all over.

I don’t want everyone in the world to be like me, but maybe having contemporaries in similar stages of life would be nice. I still need friends. And I understand many people experience being “the only one in the room” on a regular basis, but I don’t want to be a permanent outlier in my faith community. The nursery was in disrepair-it has been a long time since toddlers were there. As a parent of a toddler with Dravet Syndrome, this is an issue.

On the drive to lunch (after ducking out a side door to avoid mingling with the septuagenarians), we all said some variation of “What if we just don’t go to church anymore?” Over Jason’s Deli sandwiches and sweet tea, Lindsay and I both confessed we missed Ogden.

I clarified. I missed people in Ogden, our old church, and the coffee shops, which were many and excellent.

Our old church, the one where we felt so comfortable? 2 families with kids, and rarely did they attend at the same time. That’s all I needed. A few more would have been nice, but it was enough. I like older (including the elderly) people, I just don’t want to hang out exclusively with old people all the time. Not only does it make the necessary evil of small talk difficult, but there’s a disconnect in values, frames of reference, and communication styles. Though this may lead to a wider perspective and deep discussions, it might also lead to me being told hip hop is just noise, and they ain’t even heard that new Chance jawn tho.

Life will never be perfect, but I’m not ready to give up trying. It may mean casting a wider net. I went to a Buddhist meditation class on Thursday. I largely enjoyed the experience, and managed to not fall asleep, even with long stretches of silence. I was a little put off by a little of the dharma talk-there was a short portion about disembodied spirits (which cause illness because they think humans mean them harm) being assuaged by offerings of food. Though that’s not the weirdest thing I’ve heard in a religious setting, it made me uncomfortable.

You see, I grew up with a stringent dark/light binary. Either you were actively reading your bible and praisin’ the Lord, or you were being molested by demons. There was a gross fascination with the occult and Satan. Demons loomed large on my conscience, and I spent more time being afraid of being possessed or descended upon by a fanged tormentor than I was trying to live like Jesus, or the distilled version of simply trying to not be a jerk. It could happen anywhere, anytime. I had anxiety and recurring nightmares about it. Listening to a Color Me Badd song, doing yoga, teaching kids about dinosaurs, watching a movie starring Kevin Spacey were all portals to hades.*I am purposely not linking to videos or articles stating a belief in these statements, because I don’t want to. Google at your own discretion.*

I’m not expecting evil around every corner anymore. Not demons or botulism or ISIS. It is freeing to not focus on negative potential events. Sure, I still lock my doors and keep an eye out for crackheads, pyramid schemes, and wolves, but bad things that might (and totally might not too, you guys) happen don’t consume all my operating RAM. It’s taken me a long time to arrive at a place where I reclaimed the right to worry about what I want to, and use my thoughts as I see fit, and I will fiercely protect it.

And any church I might consider being involved with is just going to have to deal with it.






Two years

Facebook reminded me it’s the 2nd anniversary of meeting that a-hole monster, Dravet Syndrome. Here are some of my posts from that day:

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Close Call


I had a pretty intense, crappy situation happen recently to someone very important to me, and the occurrence of which also impacted me (but not as severely). I can’t share much, because it’s private matter, and does not belong on the internet. I swear I’m not trying to be a drama hound.  When I was processing the situation, I was unable to grieve. I was in “fix it” mode, but I usually still feel all the feels.

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The Transfiguration by Raphael (1516-1520). A boy with epilepsy is depicted in the foreground

The Transfiguration by Raphael (1516-1520). A boy with epilepsy is depicted in the foreground.

I forgot about lent, and I really wanted to do it this year. After a period of confusion and mere survival, it seemed an exercise in devotion and focus would be therapeutic and  constructive. I didn’t grow up observing the lenten season, like most people who grew up in protestant camps. Wednesdays don’t usually capture my attention, and Utah isn’t exactly known as Mardi Gras central, which didn’t help. Ultimately, I was too busy and focused on my own junk, and did not make lent a priority.

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For a while now, my faith belief in God has been intellectual. I’d read a lot of books and had many personal experiences, to include what I believe to be interactions with the Holy Spirit. Dealing with Paloma’s epilepsy and trying to continue living has really shaken me up, and caused me to reevaluate a lot of what I thought I knew about myself, how I fir into the Universe, and what it all means. As a result, I wanted to be done with God.  I imagined my life as an Athiest, and practically what that would mean in raising my kids. Would I still engage injustice? Would I still care for widows and orphans? 

What it looked like, instead of the grass being greener, was just laziness. It wasn’t for me, at least not the blasphemous, hedonistic, mean-on-the-internet kind of Athiesm.

Also, there was the pesky, continued belief in a benevolent creator still involved in our daily lives.

I begged God to leave me alone.  I wanted to feel alone. I declared that although I still affirmed the Nicene creed, I no longer called myself a Christian. I’m still not entirely comfortable with the cultural cache it carries.

I had gone spiritually feral.

There’s a song by Aussie hipster-worship powerhouse Hillsong United called “Oceans”.

Let’s backup a bit.

I started going to church in the mid-90’s, and at the time, most “Christian” music was heavy on the Christian and pretty shoddy on the music. I still played in bands at the churches I’ve attended.

At around 2006, I noticed that Christian music had started to suck less, and a big part of that for me was discovering Hillsong United. This was around the time I was returning to regular church attendance after a few failed attempts had soured me on the idea.

This music was important to me, it wasn’t bad art praising the most creative entity, and was significantly less corny, out of touch, and dorky.

Last year, in our early days of epilepsy, before we even got a specific diagnosis, our church attendance started tapering off out of necessity. We still prayed every time she had a seizure, but after it didn’t work several times, I stopped. 

One morning, Paloma had a seizure right before we were to go to church.We had to rectally administer a valium gel, which made her understandably miserable. She would moan and wail for hours, and we’d have to drive her around to soothe her.

I heard “Oceans” that day. I’d heard it previously, but the chorus particularly stood out to me:

“So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine”

And I couldn’t bring myself to sing along, because it was a straight-up lie.

I hadn’t done that. I could not do it. This power-pop ballad was setting an untenable standard for how I handled crises.

I stopped listening to “Christian” music intentionally at that time. I also stopped playing in the band. Yes, I felt closer to God when I did, but I refuse to be a spiritual Milli Vanilli, a playacting sham, manipulating people. When I read my bible it was detached and didactic.

I declared myself an unfit vessel, and that was that.

Today, I went to church with the 2 older kids. It was reluctant, I looked for a thousand reasons to not go, from bad parking to attempted bribery .

They played “Oceans”, and I felt bitterness well up.  I remembered Romans 8:1 “Therefore, there is now no condemnation for those who are in Christ Jesus”, which I’d heard applied as an injunction against negative self-talk.

 I don’t think that clause applied to me anymore. I had taken back my heart from God, and no longer harbored excitement, or ardor, or devotion. Perhaps I initially did it as a protective measure, but solidified it when I *REALLY* was trying to force myself to stop believing in God, or any god, or the possibility of a god.

I had reduced the God that invented baby giggles and volcanoes and puffins and photosynthesis to a cold, hard fact. God was no more important to me than gravity, which goes on whether you believed in it or not.

God had become an “it”.

I know that’s wrong. I know a more abundant life awaits me. Also, based on my judo experience, gravity totally exists and matters a great deal.

For the past few years, the Holiday season was something I got very excited about. I had gotten really plugged in to the community. I was managing winter homeless shelters, getting in there and learning people’s stories. I was as excited for Christmas as I had been when I was a small boy. I started getting recognized as “one of the good ones” by street people. I felt I was investing my life in something meaningful, that I was living how Jesus would have. I went to a shelter to wash homeless people’s feet on Christmas. I have a thing about feet, I think know they are the very worst, and these feet were especially nasty. It was God alone that allowed me to wrangle these supernasty monkey feet, talk story with people, affirm their humanity, preserve their dignity, tell them I loved them, and give them a fresh pair of socks. I didn’t throw up, even though the homeless feet water splashed on me. I was excited, and it was contagious. Them feets were contagious, too, but everyone involved had a blast.

I want that. Not to feel important, but to be able to get out of my own head. I want to be less self-centered and have goals that shake the bonds of poverty, and substance abuse, and violence, instead of making a little ripple immediately around me.

I’m ready to come home. It won’t be the same as before, and there will still be issues (Gays, the environment, institutional racism). Still, I know it’ll be a big deal; God will put a ring on my finger and throw me a huge party, and while I’m not one for being fussed over, I’m ready.

Rational thought no longer satisfies me.

I’ve always fancied myself a man of science.  That is, if I encountered a new fact about something, I would adopt it and adjust my understanding. I would wrap my brain around this new idea. This would apply to something like bird migration or electromagnetism. I would accept this new truth as a revelation from academia, and embrace it as the new “is”, and be comforted that I had the most up-to-date beliefs.
However, I no longer derive ideological comfort from this. Before, the cold, impersonal facts of the universe imparted to me a kind of romantic dependence on systems and their conflicting chaos and order. It was simply how things were, and to have feelings abut it was irrational.

And that’s where the friction is- rational doesn’t cut it for me anymore. Rationalism is not an idol for me. Being a rational thinker, and thought of as a rational thinker no longer appeals to me.

Faith does not, in my mind, contradict rationalism- it’s a different instrument capable of playing the same piece of music. I’ve always seen the hand of God in photosynthesis, the change of seasons, in Beethoven’s Ode to Joy, in bison on their spindly legs, in spider silk that seemingly sticks to everything but spiders.

Paloma’s care has caused me to not only question, dispute, and experiment with how medicine is perform, but many of the methods and motivations of medical science. It’s also forced me to embrace as fact many things I cannot understand or fully articulate.

Because I didn’t want to be seen as an anti-science Luddite, I’ve made a point in the past of distancing myself from the anti-vaccination crowd. However, the people I once viewed as misinformed, jabbering goons are starting to make a lot of sense. I find myself part of a non-mainstream, untrained group of people making life-and-death choices regarding their children, such as implementing strictly-regimented diets, or weaning kids off powerful anti-seizure medication that was prescribed by an honest-to-goodness neurosurgeon. 
I am now the kind of person who trusts their intuition over the recommendations of brain doctors.

One of the reasons for this is that we keep discovering or proving they were wrong. Paloma had her first seizure after getting a vaccination.  In corresponding with other parents of Dravet Syndrome kids, this is a fairly common occurrence.  I’m still not super anti-vax, but perhaps something to do with the reaction to the shot initiates seizure activity, which was pre-existing but dormant.

I have personally stopped a few of Paloma’s seizures with essential oils. One Two of them stopped just by letting her smell the oil (eucalyptus) as I waved the bottle under her nose.

There is a correlation between seizures and the Lunar cycle. Paloma has a long, intense seizure every month during the same phase of the moon. Some people attribute this to intestinal parasites, but I’m not willing to go that far. Yet.

These are my experiences and conclusions.  I cannot explain them, but they are my new facts.

I am still highly skeptical, even regarding my own leanings.

But I know there’s something more, it’s more beautiful than entropy, and I don’t need to affect stoicism to appreciate it.