Cluster Headaches: Doing Theology with an Agonizing Head

For the past 20 years or so, I’ve suffered from a neurological disorder called cluster headaches. The name comes from the fact that attacks tend to come in ‘clusters’, usually at the same time of year and at the same time of day. For me, it is usually in the summer or early autumn and at between 3am and 5am, lasting about one to three hours. A 'cluster' used to last about two weeks. Recently, they've become longer... a lot longer. I live in terror that, one day, the 'cluster' will simply not end...

The term ‘headache’ might seem self-explanatory, but I actually hate that part of the name.  When the average person thinks of a headache, they think of a dull ache, a nuisance, something that makes other tasks that little bit more difficult. But please believe me when I say that the word ‘headache’ does nothing to convey the severity of the pain of a cluster headache, which many medical researchers have described as the most severe pain a person can experience. I’m in the midst of a wave of attacks now, so they’ve been front and center in my mind for over two weeks now- yes, this cluster is longer than previous ones. For my own sake, I have tried to come up with a description:

The pain is centered in the left eye, specifically in the tear duct and the right-hand top of the bone of the eye socket. Attacks come on extremely suddenly, within a minute or two, usually waking me out of a sound sleep. The sensation- as best I can describe it- is of a small centipede, about an inch long and the diameter of a coffee stirrer, with a hard, sharp, bony exoskeleton and sharp, grinding mandibles, gnawing at the bone at the top of the eye socket. The insect then burrows its way into the skull of the forehead right above the eye, gnawing as it goes. While this is going on, I cannot think; I cannot speak; I slur my words; I can’t keep still but it is agonizing to move; my mouth contorts into a wide grimace and my jaw feels locked. I can feel myself making noises at the back of my throat but I don’t really ‘hear’ them. My left eye begins to tear profusely and my nose runs excessively.

Treatment, for me, involves lying flat on my back with an ice pack tied tightly over my left eye with a bandanna. I’m also helped immensely by a range of medications called ‘triptans’, used for certain migraines and cluster headaches. They take between 15 and 30 minutes to work, and they are so effective it’s almost eerie; they literally turn the agony off like flipping a switch. The centipede's exoskeleton disappears, leaving it soft and white. It’s still moving but it is swimming rather than burrowing, and it makes its way around the back of my face and is gone.

An attack leaves me feeling physically and emotionally drained. It also can leave me slightly irrational; if I fall back asleep, the first feeling I have when I wake up is a slight panic, a desperate attempt not to think about the attack, a fear that thinking about it will in some way ‘anger’ it, ‘wake it up’. This passes as I gain a fuller consciousness, and I feel merely weak and listless, not particularly interested in getting out of bed. 

So yes, ‘cluster headache’ is a rotten term. Words that do come to mind, in a free association sort of way are:

Screaming;

Agonizing;

Terror;

Grinding;

Bone;

Raw.

Beyond what the attacks do to me physically, part of the pain is what my attacks do to my family. My wife has a hard time sleeping with me when I’m in the midst of an attack, usually ending up on the couch. She’s incredibly understanding about it and very caring, but it’s upsetting to me. I homeschool my daughter, and now that summer is here, my son is out of school and home as well;  if I’m down with an attack, they’re basically alone until I recover. Moreover, this wave of attacks has been much more sporadic than ones in the past- day, night, more and less severe- and this wave has been longer. I’m into the third week, which is very unsettling.

Finally, this wave of attacks has been made much more difficult for all of us as we now live in the US and I have no medical insurance. I took myself to the doctor at the beginning of this wave ($120) and she gave me a prescription for a box of nine pills ($30). This might not sound like a lot of money to some, but it’s a very significant expenditure to us. Simply put, an ongoing chronic illness is not in our budget. On top  of that, in the US you’d  better make sure you’ve phoned around a number of pharmacies and done some price comparisons of the meds you need; they were $30 at one, over three times that ($98) at another! In Northern Ireland, the doctor visit and the meds would have both been free. Dealing with chronic illness was so much easier with that social safety net; It was such a load off my, well, head…

As I lay in bed, unable to sleep after an attack, I began theologically reflect on all this. I was reminded of Matthew 25:36. In this parable of Jesus regarding the judgment of God, the righteous are told by Christ, ‘I was sick and you comforted me’; the unrighteous are told that ‘I was sick… and you did not comfort me.’ The only difference between the two, according to the biblical text, was not ideology, doctrine, or beliefs; everything hinged on what they did and did not do. The message is clear: beliefs can only be judged by their practical implementation in our daily lives and in how we treat our neighbours. Our beliefs about God, the Bible, faith, righteousness, and Jesus are essentially meaningless on their own; they only become worthwhile in light of what we do for  others.

In James 2:15-17 we read: 

'If a brother or sister is without clothing and in need of daily food, and one of you says to them, "Go in peace, be warmed and filled", and yet you do not give them what is  necessary for their body, what use is that?  Even so our faith, if it has no works, is dead...'

The Christian Gospel must have a social outworking or it ceases to be in any way ‘good news’.

We must constantly ask ourselves, ‘what would be good news to those around me? Those that are hungry, ill, homeless, imprisoned?’ But even more importantly, we need to ask the hungry, ill, homeless, and imprisoned themselves what would be good news to them.  It is in that communion between humanity that the Gospel of Jesus becomes alive and powerful. In doing so, we open ourselves to be converted to Christianity- by those who may or may not even be Christian.

So, what would be ‘good news’ to me, someone who lives with a chronic health condition, working at a job that provides me no health benefits and living in a state that provides me with no  health care? Well, it would be nice if the state of Montana would accept the Medicare expansion offered by the federal government to ensure that people like me have access to basic healthcare. In a fit of ideological pique, Montana's state officials turned it down, leaving me- and thousands like me- in the lurch, dealing with any number of medical issues on our own. It’s infuriating and deeply troubling; every time I drive by a political poster for a candidate promising ‘more freedom and less big government’, I read ‘pay for your medication yourself; new windshield wipers for the car or meds. Hey, freedom of choice! THAT’S America!’ I realize that in thinking that, I’m putting myself at odds with probably everyone in my Church, most of whom are socially-conservative and upper-income bracket. That in itself often makes for an alienating worship experience…  

I’m not advocating for one political party or another; I’m advocating for a theological outlook that transcends ideology and puts the needs, the hopes, the dreams, and the lives of people first. Our theology must begin with people; everything else follows on and is necessarily secondary. In the biblical text, humans were created in the image of God; the way we best mirror that image is when we become more human. Jesus was not the perfect image of the Father because of where he came from but from what he became- a man, a carpenter, a poor villager, part of a family and a community. The divine spark in us is precisely that part of us that is most human. 

Anyway, I got another nine pills today- another $30. I don’t know how long they’ll last. But I’d give anything to be able to take one every time I needed one and not try to gauge if the attack is severe enough to merit one.

THAT would be real freedom. That’d be real Good News…