Theology, Culture & M.E. Brian Schmidt, BGS, M.Ed. [& M.E.]
The following is an excerpt from my All Saints’ Day, 2007 reflections on living with M.E. after having the illness for 17 years, and a month after a dear person who had M.E. took her life after living with it for 28 years—mostly on her own, without much help, and not believed most of the time.
M.E. is a poorly understood chronic illness affecting thousands of people worldwide. It’s closely related to Fibromyalgia [FM], a disease that also involves neurocognitive symptoms, pain and chronic fatigue.
Most people, including many doctors, if they’ve even heard of it, view those who have M.E. as malingering hypochondriacs who are depressed. Few people grasp just how devastating this very real illness can be.
I recall once, when I could no longer afford the upkeep of a car, borrowing my brother’s car to go get groceries. On the way, I passed the Catholic church I sometimes attended. The 5 o’clock mass had already begun. I wasn’t particularly in the mood for church that day, given I felt quite awful, but I thought, I’ll check it out, and if I get too fatigued, I’ll just walk out and continue on to the store. But it was the type of service “just like the [Good] Doctor ordered.”
The First Testament reading was from Job 7, and ended with the verse (v.7) that declares, “My life shall end in unhappiness.” The response to any liturgical scripture reading is, of course, “Thanks be to God.” “Thanks be to God, indeed” thought I — a God who allows us to feel what we feel, to speak our truth. The Psalm and Epistle readings were much in the same vein, though I forget which they were. The Gospel “lesson” was about one of Jesus’ healings: I think it was the story of the woman who had bled continuously for 12 (twelve!) years and used up all she had on doctors’ bills. (Boy, could I relate!)
Then the priest got up for his homily. He said that Jesus didn’t heal people just to relieve their physical symptoms. Oh? That’s the emphasis that seemed to be propounded in all the various churches I’d ever attended. No, Jesus apparently healed people so they could be restored to their communities (being outcasts as sick folk often are—still, today) and to a sense of purpose and worth through being able to work again. Wow! Now there’s some Good News for those of us who suffer chronic illnesses.
Once I got my groceries and brother’s car returned, I had to phone Mark, my ME/FM friend who had a horrendous trial over disability coverage. I relayed the Good News.
Mark couldn’t resist calling a whole bunch of ME/FM folk to tell them the story. Those of us with ME and/or FM yearn, not just for physical restoration, but for a deep sense of inclusion and belonging in a world that has largely forgotten us. We so want to contribute our talents, and not be a burden on society. “Hallelujah! Praise the Lord! Thank you, Jesus—and all that!” But why isn’t that happening for us today, Jesus, if that is your Abba’s intention for us all? Why not, indeed! Because, I think, God’s answer may lie with us, in our deeds.
Comparing Sheep and Goats
At another point in my life, when, like so much of our time being reduced to watching TV to pass the time when people with M.E./FM are too fatigued to do anything else, I happened upon a religious program that again blew my mind. A minister from the UK was sharing how his church tried every evangelistic program ever designed to increase their “numbers.” Nothing worked—even though various programs had apparently been highly successful elsewhere. So his church decided to revisit the Scriptures to see what they might be doing wrong.
Eventually they came across Matthew 25: “When you fed the hungry, you fed me,” said Jesus. “When you visited the sick, you visited me.” They realized that this was the basis, according to this text, for the Final Judgment — not how many “souls they had ‘won’ for Christ.” So they began to minister to people’s needs, whatever they were, whenever they met someone in need. Soon their church was packed. They got “The Message.” Ever since that show, Matthew 25 won’t leave me alone. It now colours all I see theologically.
For one thing, I wonder: this great Healer said, “When you visited the sick, you visited me” not: “When you healed the sick, you healed me.” Why t/his emphasis on visiting?
He must have realized that not all would or could be healed, and hence be restored to work and the community at large. Some remain sick, and so he desires them to still feel included and valued for what they can still give to the world. How does that happen?
By the well going to visit the sick where they are, to enter their world, to become a part of that world of suffering and disappointment. To see, call forth, affirm, and benefit from their perspectives, insights, love. But visiting the sick, I realize, is very difficult, as I’ve been learning when I visit my father with his rapidly deteriorating health.
I may want desperately to heal my Dad, or fix things, make things better, which is all good, but to deal with his frailties that try my patience? That is so hard. And so his sickness confronts me with emotional aspects of my life that are unhealed. His sickness exposes my lack of patience, my inabilities to focus on what’s good in the situation.
I wonder sometimes if that is why God doesn’t heal us all: because the sick can be the catalysts for healing the seemingly “well”/“got-it-all-together” people.
For those who believe that Jesus is God-in-human-garb, then it’s God here saying the care of the disadvantaged and cast-offs of society are a top priority in the divine will on Mother Earth. This is certainly borne out in the majority of script-ures. It would appear from what I know of the Bible that every book from the Torah (Moses’ Law), and the Poetry/Writings, and the Prophets, to Jesus’ life and words, and those of his disciples, shows that the care of the poor, the sick, the foreigner, etc. is of crucial importance.
I recall that when Gordon Campbell became premier of BC, he proposed all kinds of cuts in services to such people. In requesting prayer about this in a group email to my friends, I included scriptures from almost every book in the Bible backing up the huge God-focus in Scripture on the need to care for the disadvantaged. Of the 50 or so people I sent it to, only one friend from my past replied. Basically she admonished me by saying something to the effect that none of this has anything to do with Christ (-ianity)! I was aghast.
The Whole Truth?
In an age of a predominantly American-dominated “health and wealth” Gospel of the evangelicals, few pay attention to this predominantly scriptural emphasis! For all their insistence on the Bible being The Word of God, the whole truth and nothing but the truth, there’s lots of ignoring a whole lot of truth. Much is made of “The” biblical perspective as being the only biblical perspective: namely the early Israelite belief that if you do right, God’ll douse you with wealth and health. (This is true of most, if not all, religions to some degree, whether it involves G-D, Allah, the Universe, or karma—all of which makes me suspect this is a very primitive, engrained, survival-of-the-fittest, evolutionary mechanism we haven’t outgrown, sadly enough, but which the Bible attempts to redress.)
So by the Psalms, we see that some poets are beginning to wonder why they are suffering when they have only been virtuous. The drama of Job wonders the same thing. Then come the Prophets who declared that others suffer because of the ill-gotten gains of the rich (e.g., Amos 5.11-15). Jesus reinforced the same thing: “Woe to you who are rich” he declares in Luke’s Sermon on the Plain. The disciples (though some of the women were rich) largely experienced lives of hardship, sickness, persecution—and the wealthy Christians often gladly gave to help their poor “brothers and sisters,” or were chastised, as James’ epistle does, for not doing so.
But the sick and those who are disadvantaged pose a threat to the “health and wealth” half-truths—as well as to the healthy and wealthy! No wonder we are ignored, except to attempt to herd us into massive healing services where we are expected to give what little money we can spare to benefit the luxurious lifestyles of some televangelistic “healers.” (A corollary to the Matthew 25 passage is the Matthew 7 indictment on the Last Day: “Get away from me, evildoers. I don’t know you!” “But Lord, we healed in your name!” Hmmm. Certainly should give pause for thought and a reversal of actions!)
So in light of all this, where is The Church (at large, generally-speaking) when it comes to true healing and visiting the sick? Acute illness—someone in hospital? Great! But chronic illness? It begins to wear people down. It takes more commitment, more time—and if someone can’t be fixed, and/or if they look like us and lived like us, perhaps it’ll happen to us, too. Rather than be faced with that prospect we see incarnate in the sick, we best avoid them. Blame the victim. God’s punishing them. Why mess with God?
I don’t know if this all too iconoclastic or bombastic or whatever the term might be, but I’ll temper it all here with a bit of cultural wonderings to provide a context for the modern church and her peoples—in terms of North American Christianity, at least.
I don’t know about you, but my parents were raised on the prairies during the Depression years. Rural folk then knew that no one had the resources to buy all they needed to be a huge success, let alone just make a go of things. Everyone helped everybody else. Tractors and labour were shared. If a family was down financially or health-wise, the whole community pitched in (unless, I guess, if the person or family was the scapegoat of the community—we all seem to need at least one, after all.)
And when I was growing up, I lived in a small town and went to a small church largely made up of people who came from such backgrounds. If someone was sick, everyone helped out with casseroles and such. (If someone needed financial assistance, however, that seemed to be a different matter that Welfare was supposed to take care of.)
So I was a little shocked—no, a great deal perturbed—when as an adult with M.E., trying to work 10 hours a week for an evangelical outreach organization, that the mega-church where the popular director attended did nothing to help he and his wife when she was at home, dying of cancer.
Perhaps everyone at their “Bible-believing” church thought everyone else was pitching in to help them, but in any case nothing was being done. So, in my typical style, I wrote the pastor and asked if someone couldn’t organize a team who’d contribute meals to this couple. Fortunately, they responded. But it made me wonder if, in our largely urban world, people can fall through the cracks more easily than in rural settings.
Yet at the same time, when I have tried to advocate for others with M.E., FM, MS and the like, asking their churches or churches in their area to help in some small, practical way, these churches seem to go out of their way in order to find “legitimate” (i.e., humanly devised) cracks for the people to fall through. So the chronically ill are still left to fend (rather poorly) for themselves.
Even if these folk were highly contributing church members when they were well, once they became chronically ill, the church as a whole conveniently forgot them—unless, typically, they had a short hospital stay, had cancer, or died, in which case, the grieving family was “remembered” in prayer.
I realize this is a gross generalization, and there are truly marvelous exceptions to it, but I must say that this is what I have experienced and observed for the most part with others. Although I was active in the church, once I became ill, few, beyond some good friends—and not all of them Christians—bothered to visit or enquire if I needed help. Others who were actively involved in their churches have told me they experienced the same treatment once they became chronically ill.
It also became apparent that church friends were often quite glad to have me visit them (which involved at least 30–60 minutes of me driving across “town”), but made few or no attempts to visit me (according to Jesus’ hopes), even if they were visiting others in my “neck of the woods.” When I no longer was well enough to go to them, the friendships basically withered despite my attempts by phone or email. Made/makes me feel really valued! Not!
In any case, while the church and society at large does recognize the need to serve the mentally challenged, those with AIDS/HIV, and the like, and even provide services to immigrants, the homeless, addicted, prostitutes, etc. —attempting not just to meet their basic needs, but also to enrich their lives—those with ME/FM/MCS are seen as not really needing anyone’s friendly help. (Myalgic Encephalomyelitis, Fibromyalgia, and Multiple Chemical Sensitivity [which often overlap] for those wondering about the abbreviations!)
The Public Perception of CFS/ME
I think part of this is due to the fact that we can look quite well and able at times—and enough times to make people think we’re pretty much capable most of the time. The label “CFS” is a misnomer by and large, and does us a great disservice, since 1/3 of the population think they are chronically fatigued, but continue to work, take their kids all over the place, and attend church, concerts, and meetings, etc. So why are we so “lazy?”
“ME” is far more appropriate: the –itis (inflammation/disorder) of the Muscles (myalgic), Brain (encephalo-) and Nervous System (myel-): Myalgic Encephalomyelitis.
(Now there’s a mouthful! I sometimes think that a better term might be “E.D.S.”: Energy Deficit Syndrome.)
An Analogy that might help
Those of us with M.E. can acquire enough energy through enough long-term rest to engage in short-term activities. It’s rather like having a bank account, only in energy-units instead of monetary ones. So going to a concert might cost us $10 of energy. We may have that amount, but only that amount. So we go, and we look as able as people with $1000s if not millions of Energy Units. But those people get to go on to do much more afterwards. It barely costs them a thing. For those of us with M.E., it might cost us everything—and if we borrowed from the Adrenaline Loan Institution, we may be paying back for some time in crashing and rest(or)ing before we can “purchase” another activity.
But no one sees us housebound and in bed for the next few days or weeks afterwards. Nor do they see all the neuro-cognitive disruptions—such as inner body vibrating—that can go on for days after some expenditure of effort. They might just see us the next time we’ve saved up enough energy or have borrowed more adrenaline to go shopping for groceries, and think, gee, like me, they must be okay. And with most doctors and other professionals still thinking this is purely a psychological syndrome (sic), it’s no wonder we aren’t believed when we say it’s as bad as we say it is.
Until there are simple, inexpensive tests that governments ap-prove to prove physical markers in our bodies (as was eventually found with MS), none of the expensive scans which do show our M.E. brain abnormalities, or complicated lab work which indicates our M.E. chemical anomalies will be utilized to verify our experiences. Our condition will likely continue to be seen as “depression” — despite all the studies out there that show internal markers that distinguish our condition as being quite different from those who are depressed, as much as the outward signs and behaviours may appear similar! (See footnotes.)
In the meantime….
We need people to take those of us with M.E. seriously. As with any illness, there are some who have a dual diagnosis of having M.E. and of being “nuts.” But the two are not the same thing! Just as someone with schizophrenia can get cancer, mental illness is not the cause of cancer. The same is true of M.E. It strikes people of all shapes, sizes, races, backgrounds, from young to old, singly and sometimes in clusters—which would suggest a viral aspect and/or a toxic environmental one. In any case….
It has tragic consequences on the lives of people who get M.E. Believe us! Hear us out! I hope no one else with M.E. feels they have to take their life because they weren’t believed or helped enough to have a life that matched their vibrant, gifted selves!
While everyone admires someone like Christopher Reeve with his super(hu)man attitude towards his disability, think about it: he had a very loving wife, fame, wealth, and very influential celebrity friends. He could afford round the clock care with the best and latest medical treatments and equipment. Everyone admired him. Would he have had the same wonderful spirit if all that was taken from him, and he had to struggle with it on his own?
Laura Hillenbrand has M.E. She’s the author of Seabiscuit. She wrote it in the midst of her horrible vertigo—just one of her M.E. symptoms. But she was able to do so, I think, because she has a caring partner who does all he can to provide for her. If he hadn’t been there for her, would we have that wonderful book, and subsequent movie, to inspire us?
All those who have M.E. need similar help. Most of us get very little support, if any.
Please consider how you might make a difference in the life of a person with M.E. in your circle. After all: WWJD?
Theo + logos = God + logic or word. “In the
beginning was the Logic, and the Logic became flesh and dwelt among us….[and
said,] ‘I only do what I see my Abba doing’.”
See my research summary comparing M.E. & depression published on www.mefm.bc.ca
Click on this medically oriented website
for lay people to check out the latest on M.E.: http://www.ahummingbirdsguide.com/themesymptomlist.htm
Their index/home page will also lead you to research, tests, resources, etc.