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.
“God-logic”
I want to preface my account of living with
M.E. with a bit of theology, because that has been an engrained part of my
being from early childhood on. And
because theo-logical questions are also a huge part of my struggles: Where (on earth) is God in all of this? And, is there even really a God who cares? (And, where are
all the people who care?)
Syn-chronic-city
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.
“Cult? Sure!”
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.
Ecclesiastic Crack
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
Or simply click here. Then click
on the LH column links “What Is ME?”
& “Research”
You may wish to copy the
two articles while that site is still up and running.
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.
I appreciate this article. I too have been convicted by Matt. 25, but forgot about the sick to some degree. Thanks for the reorientation; and may more visitors come your way reguarily.
Posted by: Cheryl Berto | March 05, 2008 at 10:01 PM