“Therefore, to keep me from being too elated, a thorn was given me in the flesh, a messenger of Satan to torment me, to keep me from being too elated.”
Saint Paul, who cannot be accused of overabundant elation, in 2 Corinthians 12:7
I love him, but Saint Paul has always come across to me as a bit of a grump. I admit I could be biased. Or maybe I just have read Galatians a few times. I firmly believe he is a saint, but he hardly strikes me as a ray of sunshine walking into each room he entered. While contemporary pop culture idealises, and a bit idolises, the cheery disposition (c.f. Joel Osteen’s permasmile).
Saint Paul was a Holy crank. And for good reason. God, Saint Paul tells us, either gave or allowed Satan to give him a “thorn” “in the flesh.”
For about two thousand years who study Saint Paul have been arguing amongst ourselves about what his thorn was. Was it a physical ailment? A limp or stutter, something that would make his missionary work a physical torment? Was it a bodily-rooted spiritual struggle? I have read both anti-gay and Queer theologians argue for Paul’s homosexuality, either to prove it was conquerable and from Satan or to prove it’s normal. Was it a general theological comment on the condition of humanity?
I have no idea. Two days into seminary orientation I gave up my ambitions of becoming a New Testament scholar for dreams of pizza parties with young people in church basements. (Cue Galinda, “And I couldn’t be happier!”)
But this is much is evident: Paul’s body was not perfect, either because he had something specifically wrong, something culturally thought to be wrong though it wasn’t, or because it was mortal and all of our bodies are subject to the inevitable and serious flaw of dying. Our health is always really a matter of degrees, not ultimate consequence. We’re all going to die. And the process will often be unpleasant. We all have thorns. Some are more obvious. Some are more painful. But we all have them. Or will. Don’t you dare get too elated, life is going to prick you in the side.
Like all mere mortals, I’ve brushed into the brambles of corporeal sorrow. But I distinctly remember when my own persistent thorn became evident.
When I was 21, I was living in San Diego—technically part of my own country but still a stunningly foreign and confusing place with far too much sunshine and far too little sarcasm for my liking—and being a good Mormon boy, wearing my white dress shirt and rebuking the locals for belonging to apostate schisms of God’s one true church. Relevant to this discussion, though, was that doing so required “exactness and honor.” We had to wake up at an exact time, go to bed at an exact time, and do a number of hours of things in between that were mathematically impossible. Point that out, and be condemned for a lack of faith. Get sick and be condemned for “disobedience.”
The problems were always there, but for a long time I was able to feign that they were not. I knew my spiritual greatness could conquer my mere body. And for a time it did. There were the headaches. Crushing migraines that made sunshine feel like fire and slightest noise, like the phrase, “Let’s go, Elder,” particularly in a Utah accent, feel like knives in my ears. There was eating. Or rather than later affects of eating. I experimented with veganism, with going gluten-free, anything to make sure that if I were stuck on a bicycle in a suit in a tract home development miles from any welcoming bathroom, I wouldn’t need to use it. Mostly I just didn’t eat. I was 120 pounds, and my same height, back them.
But eating was just too risky (and $4/day for food didn’t go far, not even in 2004 dollars). There were the spontaneous joint aches. Random joints announcing, “Not today, I won’t,” during morning prayers. Somedays I could not open a jar but I could bicycle up a mountain. Other days I could not bend my knees, but I could open and close jars at food bank all day long. Then came nearly catastrophic narcolepsy. It usually came suddenly as a wave of exhaustion. I could not keep my head up. I could not keep eyes open. I sometimes had to pull over the car to avoid killing anyone.
This was all considered a behaviour problem. I was “disobedient.” I was called to repent by church leaders who I believed to be inspired by God. So I repented, but the migraines did not go away, the digestive system did not work better, the crashes of energy did not give way to bursts of strength. I prayed. I begged God. But I was told, and for a long time, believed, I was lazy.
My mission president rebuked me. Mormon missionary work has a strict internal hierarchy with other 21-year-olds with only a few weeks more experience are God’s emissaries over every detail of you life, among the higher ranking of them were “zone leaders.” My zone leaders became increasingly invasive and demanded I confess any deeper sins that were causing me to lose the presence of the Holy Ghost in my life. Surely I wasn’t sick. I must be reading anti-Mormon literature. Or be masturbating too much. Or be secretly gay.
Finally, after months of things getting ever worse, I was put on a plane home, to be immediately unemployed, homeless, and cut off the church’s health insurance.
In Massachusetts, I spent months trying to reconstruct a life, accepting I was a failure at being a Mormon missionary, a thing which had already been the cause of my entire education being on hold for years. I was sick. I was depressed. And I had to work hard enough long enough to get health insurance if I were to ever take care of either of those things.
Fully a year and a half after my mission in San Diego had ended, I finally could afford a doctor’s appointment. Nothing was better, yet, on the other hand, I was not dead. The doctor took my symptoms seriously, thoroughly tested to rule out AIDS or cancers, and told me, “I am diagnosing you with CFIDS.”
Chronic Fatigue and Immune Deficiency Syndrome. Also called Chronic Fatigue Syndrome. Sometimes confused with or overlapping with systems of fibromyalgia. It is a disease that remains primarily known by its self-reported symptoms, which makes all too many doctors suspicious and dismissive, but it is not mere laziness. There are a clear pattern of symptoms most of us mostly share.
The Centers for Disease Control defines it as:
1. Having severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis, and
2. Concurrently having four or more of the following symptoms:
◦substantial impairment in short-term memory or concentration,
◦tender lymph nodes,
◦multi-joint pain without swelling or redness,
◦headaches of a new type, pattern or severity,
◦unrefreshing sleep, and
◦post-exertional malaise lasting more than 24 hours.
So many things made sense once my doctor said that. Things I had seen as an independent list of complaints, things that in the aggregate all made me even think of my self as lazy and/or a hypochondriac were all systematically related, even if not understood. Things that were not crises on my mission, but real, also made sense. The idea of just having a generally suppressed immune system helped understood all the “childhood” ailments I persistently get as an adult. Ear infections are just for children some doctors claim, but they are an annual tradition in my ear canal, for example.
At the moment, treatment still just comes in the form of treating symptoms as they arise, hopefully without counteracting other treatments. I also have been diagnosed with depression and ADHD, and that is common for CFIDS patients. The lines between some symptoms are blurry, and the cause and effect relationships are not always clear. I treat the joint pain. I treat the migraines. I modify my sleep schedule. I treat the diseases that come up. Medically the diagnosis itself has not been particularly helpful.
Psychologically, spiritually, however, the diagnosis saved my life.
I stopped blaming myself. I wish I could say that family or church leaders or friends all were supportive and kind. They generally weren’t. Mostly I decided to just never really tell anyone. Openness generally lead to one of two equally unappealing responses, incredulity demanding my defence or an excess of pity. The incredulity often came in the form of not understanding the randomness of my own personal lived experience with CFIDS. I am not lazy. I can be very high energy. People have seen me work 16-hour days. People have seen me climb mountains. People have seen me dance until 2 am with hundreds of high schoolers at a church camp. So when I had flare ups of joint pain or crushing fatigue, they would tell me I could just put my mind to it, that I obviously did the things I liked and was making excuses. The excess of pity was no more helpful. You are sick. You are disabled. Go get a disabled licence plate. Go sign up for disability cheques and stop worrying about going to school or having a career.
I knew I had to find a middle way. I had a thorn in my side, but I was not impaled. Other people be darned, I had to find a way to live in the dual reality: this thorn is real, this thorn does not define me.
When I was first diagnosed with CFIDS, I had failed at high school, I had failed at a Mormon mission, I had failed at some jobs. I was a failure, and had no shortage of powerful people to remind me of that.
Since then I have earned two Harvard degrees, a master’s at Yale, and am ploughing through a PhD. I have kept up, mostly, with two nine-year-olds since their birth. Studies and schooling combined are probably an average of sixty hours a week, mostly unrelenting, for the last ten and and a half years now. (Also, I happened to switch churches.)
CFIDS is a prick, for sure, but does not run my life.
Saint Paul reminds me us we’re all prone to thorns. Other people have far worse challenges. Other people have more minor ones. I am not sharing my story to compete in tales of suffering or tales of overcoming. I am sharing for two reasons:
- Because the experience of our bodies seemingly betraying us is pretty darn near universal, even if its exact manifestation is always quite personal.
- Because as a university chaplain, I have a lot of students struggling with chronic mental and physical illnesses (or maybe even things like CFIDS which could be some of each!), and I want to real about what has and has not worked for me. Not to prescribe a one true path, because there isn’t one, but to offer one example that may provoke ideas and hold out hope.
The most important thing about thorn management in my life is to emphatically declare, I did not start working harder. I did not improve my work ethic. I did not stop being lazy. I never was lazy. My work ethic was not the problem.
That is important because well-meaning people who saw me as a high school drop-out and who saw me giving a graduation speech at Harvard have complimented me on turning myself around or getting my act together. I’d love to take that credit, but I can’t.
I will offer a few tips in thorn-in-the-side management, though.
- Whatever the thorn in your side is, it is real, and nobody else gets to tell you it is not. Denying other people’s struggles is a key strategy for feeling good about our choices not to help. Ignore that nonsense. It is real. If you have pain, you have pain. You do not need to prove it or justify it to everyone else for it to count.
- Relatedly, you get to decide who gets to see any thorn in your side and when. The degree of urgency, the intimacy of the relationship, and the sense of privacy of the person all play into whether or not you’d take your shirt off for another person to see any actual thorn lodged into your side. The same balance applies to telling others about your struggles. There may be times you need someone to know something so they can help. There may be times you want them to know because if they don’t your relationship feels too distant. There be times you want to keep your darn shirt on because you should never have to defend your right to be modest. All options are yours to make. This blog is being moderately open, for example, and it’s about thirteen years after the worst. That’s the balance I went with.
- If you can’t change your condition, change your context. This, not a renewed work ethic, is what saved my academic life, my professional life, and allowed for the eventual existence of my parenting life. Public high school and Mormon missionary life were not ever going to work with CFIDS. I cannot be contained in a certain space and immoveable schedule in ways that don’t let me pick when I do which tasks or when I go to the bathroom or even when I sleep. In college, I only had to be awake for three or four hours, at most, in a row. I was not required to be present five days a week from 7:30-2:30. I can’t speak for everyone with CFIDS, but I can nearly always muster, with the aid of naps and caffeine, short bursts of reliable energy. I have even managed 16-hour days leading youth group tours if I can sleep in the next day, or 13-weeks of church camp with no days off if I can sneak naps while kids are in workshops. In my case, I have no problem working a sixty hour work week. I have no problem writing long papers. I do have problems doing it all according to someone else’s schedule. So I have found ways to make my education and my professional life work accordingly. As a pastor, for example, I am paid for 36 hours of work a week. I very seldom work only that many, but that’s a different blog topic. What is relevant to managing CFIDS is that in my “36” hour week, mostly weeks, 50% or more of the work I am expected to do is not required at a particular time. Yes, some meetings and church services are at set times, but most preparatory (sermons, lesson plans, shopping) and communications work can be done any time. So if I up writing at 1 am or napping on my couch in my office at 2 pm, all is well. My body decides. I would note that I am so privileged this is all possible for me, that I was able to find work that works with my medical challenges. I know not everyone can. I couldn’t always. But if you can, and when you can, it is a blessing to cherish.
- There is no holiness in bodily self-abuse. There is no greater morality in lack of sleep, in lack of eating, in lack of exercise. Whatever frailty affects us needs to be dealt with, and sometime dealing with it means sleeping, or eating, or getting fresh air.
I am in love with what God lets me do in my ministry. There are days when the one-on-one pastoral care appointments get so real and honest, the social events get so intimate and supportive, the Bible studies get so deep and challenging, that I come home and cry with joy. But to keep me from being too elated, a thorn was given me in the flesh, and sometime my body says, you’re falling asleep now, your left knee cap is done for today, your right wrist will not type another word. I’m not thrilled about it. But I have a thorn called CFIDS, a vocation that works through and against and with the body my creator gave me, and somehow I’m still elated. Just not too elated.