(Part One)
It’s been almost three months since my autoimmune disease diagnosis, one that took around 10 years to figure out. By the time all the signs were there, ankylosing spondylitis (AS) had taken up permanent residence, bought furniture, covered the walls in calcification, and launched an all-out assault on my spine.
What started as unremittent back and hip pain morped into repeated bouts of iritis, chest pain that came out of nowhere, an inability to lie on my back (as in what one does in shavasana or whilst in a park on the grass, watching the clouds float by), sensitivity to light, numbness and tingling in my hands, and gnarled fingers. My knuckles are growing bone spurs. My wrists sometimes burn. The tension in my lumbar spine crawls up my spine and into my neck and shoulders, and every day by 5 pm I have a headache that I’ve dubbed The Helmet.
“The helmet’s back,” I say to Sandy before microwaving a heating pad and heading to bed
This rheumatological disease causes systemic inflammation (inflammatory arthritis) in joints and tissue. It first attacks the lumbar region, then often moves to the cervical spine. Sometimes the thoracic is involved as well, but the most common progression is back/hips to neck/shoulders. My lumbar region was already bad, with a “locked” L4-L5 caused by my body attacking the inflammation and calcifying around it. My pain had only increased in the past year or so, until finally the MRI revealed the spondylitis.
Thank goodness recent xrays revealed healthy discs in my neck, save for some evidence of bone spurs on C4-5. What I was experiencing, what was creating such pain and discomfort in my neck, was indeed the AS, but it was radiating up my spine and my muscles were in knots. Finding out that I didn’t have any irreparable (save for surgery) damage in my neck and that what I needed to do was stretch all the time, get regular massages, yoga, don’t baby it, no matter how much it cracks and pops – I cried with relief, I truly did.
I do NOT like having the part of my body that supports my head compromised. It makes me very cranky. Pain is bad enough, but something about neck pain throws me into, as my mother would say, a tizzy.
There are lifestyle changes too that I’m chafing against but must make if I’m going to live a long life. And I want to. I want to have so many more adventures with my wife and our animalia – the van is our ticket to that. Plus I’m not exactly the most fit person in the world, and with COVID concerns compounding everything, I just have to keep doing what I can to keep this body from breaking down.
Ingesting inflammatory foods or drinks or smoking can greatly increase one’s levels of inflammation. My doctor has made it clear that this is not a disease that can be “cured” by diet or exercise or speaking in tongues (joke), but I can at least help things along by reducing my consumption of said irritants. The hardest one for me to relinquish, of course, is beer.
Yes, there is the reality that complete sobriety is the best path forward. Then there’s the reality that I’ve been steeped in this culture for more than 20 years, and I’ve worked in it, too. My passion for craft beer is so much more than the liquid in my glass – if you know me at all, you know the people in the beer industry are my #1 species. I’ve learned so much about life and how to live it (well) from them. There’s just something about that corner of the craft beverage world that (generally) fosters camaraderie and good vibes like none other.*
Talking to people, learning what makes them who they are, what’s happening in their worlds and what gets them out of bed in the morning – that’s my kind of learning.
Social I am. Not drinking when I’m mostly at home and not out in Denver’s big beautiful beerverse isn’t all that hard. But. I’m still trying to work on being as sober as possible, and most of the time, I succeed. I was on the path of lessening my alcohol intake before this diagnosis, as I had the time and energy to focus on it and shift into better habits, more sustainable and healthier habits. Right before Thanksgiving I hung a calendar on the fridge, and every nondrinking day got an X in the date box. The drinking days got squiggly lines. I amassed 35 days straight of not drinking that way, and in the midst of it, I received the ankylosing spondylitis diagnosis.
Without those 35 days, I wouldn’t have the perspective I have now. As hard as it can be to completely eschew alcohol, I like who I am when it’s not around all the time. My mood improves, my patience is greater, I can think more nimbly and clearly, no hangovers, no time lost to feeling like shit. I’m having a harder and harder time justifying the use of a substance that I also put into my car, albeit in a different form.
I also had to look squarely into the face of my family’s dependence on booze, the way it has shaped our interactions and caused much strife for most of my life. I realized that I didn’t want to be a part of that dynamic anymore. I don’t want to feel like I have to drink to “deal.”
“I need a drink,” I’ve said about 500 times over the course of my adult life. Need being the operative – and incorrect – word. What I needed was something to settle my central nervous system, calm me the fuck down. To an outside observer I may not have appeared jangled, but inside I was one huge nerve, trembling.
In time I learned that “I need a drink” was a default that too often served no purpose other than to temporarily divorce myself from handling my own shit. Sitting in it, as gross as that sounds. The only way out is through, and drinking burned the bridges I needed to navigate the darkness. Moments of illumination, and temporary heat. But the fire never lasted, the darkness returned, and I stumbled again and again toward the radical self-inventory that pulled at me and terrified me.
NEXT TIME || Where I am these days with booze, how friends can get too enmeshed in one’s sobriety journey, and why I’ve grown to despise the term “alcoholic”.
*Admittedly, the craft beer industry also has A LOT of systemic issues, not the least of which is a gross lack of diversity and inclusion. More about that at some point, but here’s some recent evidence of said lack. This happened last week.
Everything is Always Over 