Last week was crap. I apologize for how terse and negative that may sound. One of the things I learned as a hospital chaplain was language often perceived as ‘off limits’ in polite conversation, or that otherwise would simply come across as a lack of creativity and intelligence in one’s speech, is very suited to naming certain realities where human suffering is concerned. I don’t promote cursing as a matter of course. Context is key however, and in the context of profane suffering, curse words seem to find their proper use and can actually function redemptively. So, as a chaplain attending to acute suffering at the bedside, I never once thought to censure those present for cursing, despite how visibly uncomfortable it made others in the vicinity. In fact, the proper naming of profane realities with the language that suits them can actually open us up to sacred theological realities. Sometimes it’s our tentativeness to be honest that keeps us from participation in the triune grace present in all situations. But I know there are some who are persistently offended by such language no matter the context and still others who will think if I said what I really wanted that I was simply going for the shock value of such a statement. No need in turning people away with the first line, right? Perhaps there will be some consolation that this particular phrasing – “Last week was crap.” – is actually an attempt to be attentive to the sensitivities of others and represents an editing of what I really wanted to say (use your imagination).
The crappy nature of last week was actually very predicatable. In fact, I saw it coming. Unfortunately, well developed foresight in this instance wasn’t enough to stave off its crappiness. One reason I saw it coming is I have, over time, discerned that the periodic fog that I encounter in all facets of my being – physically, spiritually, theologically, emotionally, etc – is a particular manifestation of what is commonly called the “dark night of the soul.” Many mistake this fog for depression, and while it can be accompanied by depression, it is not synonymous with it. I have learned that the “dark night” is a part of my spiritual rhythm, and at this point in life I can usually tell when it’s coming. This time around the precipitation for the “dark night” was the advent of the season of Lent, which is entirely appropriate I think. It is in the fog of the “dark night” that I am acutely reminded once again of my embodied human finiteness and limitedness. It is Lent that teaches me “ashes to ashes, dust to dust,” that I come from the ground and it is too the ground that I will return. Surprisingly to some, this reaches me as good news – gospel type news in fact! I am indeed thankful for this news. If it seems like many fail to realize the good news in this, it may have to do with the desire and attempt to forgo the malaise of the fog and all that it represents. But there is no circumventing the fog. No going over, under, around, or avoiding it. The way to thanksgiving, that is at least if we are being “emplotted” onto the narrative of Christ, is through suffering and lament.
As second reason why last week was crap is because Christie and I were on the heels of what seemed to us a major victory. Yes, though it may sound counter intuitive, you read that correctly. I learned as well from the patients I was blessed to render pastoral care, is the reality of the post-victory crash. It is very often that news of a helpful diagnosis, a successful medical treatment, or even the news that one can leave the hospital and go home can result in a low ebb or a valley, even depression, as the energy spent fighting for even the smallest victory gives way to yet another readjustment and reorientation. There is joy to be found, not by going over, under, around, or avoiding the post-victory fog, but only by following the path through it. In our case, the victory was that we got to see a specialist about Christie’s Fibromyalgia.
To better understand, here’s some of the backstory. In August of 2009, right off the heels of graduating from seminary and a joint ordination service from our church in Abilene a few months prior, our family moved to the Houston, TX area. Christie began her work as a resident chaplain at St. Luke’s Episcopal Hospital and Texas Children’s Hospital at that time and did two years of residency. I can’t say how much she loved chaplaincy and the sacred task of pastoral care with the suffering. We had suspected she had Fibro previously, but at the time the symptoms weren’t near as severe and the new medical insurance we had from her position as a chaplain secured medical care that helped … at first at least. Due to the stress of being a chaplain, the excruciating long hours, and the oppressive cocktail of Houston heat and humidity she went into her position as a chaplain being able to walk, to needing a cane about halfway through, to finally requiring a motorized wheelchair to function. There is no miracle cure for Fibro, and the debilitating pain presents differently for those afflicted, but the regular medical care is what kept her going. When we finally had to leave Houston due to her failing health, we also lost that all important medical insurance.
Now, I love my home state of Texas, but it’s a very difficult place to live if one gets chronically sick without health insurance. The support structures are almost non-existent and what does exist is poorly funded and riddled with catch 22s. In the end it means that people get frustrated and give up, which in turn means less money that is paid out by the state to folks that need it. Texas is also one of the worst places to file for disability or collect medicare benefits. Furthermore, though I was able to find full time employment, the insurance plans my new employer(s) offered were long on out of pocket costs and short on actual medical coverage, such that it would have taken nearly 40% of my monthly income to afford the basic, no frills, doesn’t pay for anything plan. This sort of thing I learned from a friend who worked for a large (perhaps the largest) insurance company in Texas, and knew their inner workings well, informed me that even with the ACA, this sort of thing would still afflict us. His reasoning: medical care is the USA is by virtue of the beast for profit. Insurance companies don’t make money by covering disabled persons and they do things purposefully (while still being ‘legal’ of course) to be able to exclude them by default.
So, we were relegated to a poorly funded low income clinic with a doctor who didn’t even believe Fibro was real. These clinics are good if one has a cold or needs their blood pressure checked. But, even as they told us, they are ill equipped to provide managed care for a debilitating chronic illness. They even tried to refer us to specialists on a number of occasions, which we couldn’t afford due to lack of insurance, which ironically was the reason we came to them in the first place. And what about the ACA, shouldn’t that help our situation? Well, because we are from Texas, not exactly. Because the powers that be in Texas have refused the Medicaid expansion in funding that comes with the ACA, we could in theory get insurance by law but still not be able to pay for it. I have circumvented, of course, a rundown of a lot of rather nasty politics in all this – and this is on purpose. The larger purpose here is to give an indication of the rather perniciously vicious circle we found ourselves in, with little in the way of viable options.
[I would ask that the politics not be rehearsed in the comments. Briefly, my opinion is that as long as healthcare in the USA remains for profit and insurance remains the magic key that unlocks access to decent care, we are going to have these sorts of problems, and people that need care are not going to be able to get it. The result here long term will be shorter life spans due to lack of access to managed care than for those who have the means to get insurance. Furthermore, both Democrats and Republicans I think have chosen political expediency and/or ideology over the well being of their constituents and those that need care, and as a result have (even if unintentionally) colluded with each other and the insurance industry and preyed upon the fears of American voters to create the healthcare mess the USA finds itself in today.]
All this resulted in no small amount of desperation. I had several former professors who suggested I check out UK PhD programs. Being intimidated by the prospects I had never followed through. One afternoon though, during the London 2012 Olympics, I was looking over a list I had itemized to see what it would cost of we took out bank loans to get Christie the care she needed. Between medications, tests, seeing the specialist, etc., I actually ended up tearing the list up in disgust. I found that, even with my rough underestimations, a year’s worth of this arrangement would be far more expensive than a year’s worth of tuition, fees, and living expenses while doing a PhD in the UK. What this means is that my subsequent application to PhD programs in the UK, while resulting from a sincere discernment worked out in community with others to take this step in theological vocation, was still yet at least in part, a measure of last resort as well. We really had no options left (God works that way sometimes).
The result is that we landed in Edinburgh on August 26, 2013. Thanks to the National Health Service in the UK and Scotland we were able to get access to basic medical care and obtain medications that we needed for her and would otherwise pay out of pocket. And six months later on February 26 Christie was able to see a doctor that specializes in Fibromyalgia. Not only that, but this doctor was perhaps the most knowledgeable that we had seen, and most of all she listened well (I’ll repeat for emphasis, She listened well! I can’t overemphasize how important this is) and pointed a way forward for Christie’s treatment plan (whereas the GP we saw at our surgery just said there was nothing anyone could do). This was an inestimable victory as it was the first actual specialist she has seen in about three and half years. That’s an eternity for a chronic illness like Fibro. But there was also the hard wall of reality that we hit – there is still no cure for Fibro and despite the referral to the Edinburgh pain clinic, there’s a three month waiting list. Make no mistake, we hold a profound thankfulness and gratitude for the NHS and Scottish generosity. We are at a hard fought net gain from where we were. The NHS is working for us (with some prodding here and there from us), it’s just working slowly (if we’re being honest).
[If you want to hear about this in Christie’s words, along with an unfortunate experience we had with a bus driver and wheelchair accessibility with the local bus service (whom we've had mostly a positive experience with thus far) last Monday afternoon, click 22:50 minutes into the video below.]
One of the things I want to say in reflection on our hard fought journey here (and I've only told a portion of it here) and the crappiness of last week in particular, is that the victories are always worth celebrating and giving thanks for, even while it seems these victories are always tempered with stark realities that deserve their rightful laments at the same time. Thanksgiving and lament are not opposites but sojourners and companions. It seems to me in a world chocked full of hurting people we do them a disservice in turning the gospel message into some sort of positive, cliché self-help inspiration in the name of ‘relevance.’ I read this from Glenn Pemberton’s Hurting with God: Learning to Lament with the Psalms this last week and it resonated with me:
I share Brueggemann’s alarm for what passes these days as worship, that a faithful relationship with God requires endless platitudes and songs of joy when our world and our lives are in chaos. I grieve over our loss of faith language of lament and am concerned for how our practice of praise and worship is shaping us as individual believers and communities of faith.
But more than just raising an alarm, I want to explore another way to live and relate to our God. I believe we are ready to hear and restore the ancient biblical language of lament and in the process provide a much needed resource for believers living in rising waters. If what I have found in university classrooms and churches is a reliable indicator, believers are aching for words to express the realities of their lives, to speak the truth to God instead of putting on a charade of repetitive and empty praise clichés that ignore or deny the relentless storms. Christians are ready to learn a new, more faithful and authentic language. (25)
Thanksgiving and lament not only grow from the same soil of faith but are part of the same organism. The practice of thanksgiving grows out of the prior practice of lament, so the loss of lament actually threatens a second type of faith talk: thanksgiving. (26)
It would seem far more relevant for us to form ecclesial communities of care that seek to give place to the expression of the deep lament in people’s lives, especially when done so in a way that liturgically emplots them into the narrative of Christ. I think this is a grammar people can understand and resonate with (though for some it may be too profoundly intimate for them to withstand at first). But not only that, I think Pemberton is spot on here, if we fail to lament (and to properly name the crap in life) we run the risk of forgetting the grammar of thankfulness as well. We end up losing the grammar which names our participation in the grace of the divine triune life and enlivens our ecclesial witness to a hurting world as a thankful people who lament well.