Skip to main content

Life behind the surface

When I first read the quote in the heading of this blog, it was in Floyd Skloot's memoir, The Night-Side: Chronic Fatigue Syndrome and the Illness Experience. As someone who has this poorly-named condition (also known as Chronic Fatigue Immune Dysfunction Syndrome or Myalgic Encephalomeylitis -- CFIDS/ME), Sacks' comment gave meaning to my life at a time when I was struggling to give meaning to losing my health, career, social life, and financial and physical independence. Even if I was sick, I was still a writer. I still had a mind (even if it didn't work as well as it used to) to make sense of the horror and wonder I was living that my peers were not.

As I thought about titling a blog in a way that would best describe all the disparate parts of me, this quote eventually came to mind. While it refers to the illness experience, the title "behind the surface" could also describe what I do as an academic studying American Evangelicalism and the Israel/Palestine conflict. When people find out what I study, I am peppered with questions and spend a lot of time explaining what is happening behind the surface of CNN or The New York Times.

Being poor and going through the disability process allows one to also see behind the surface of a welfare system set up to discourage truly helping the poor. One that seeks to punish the poor while maintaining the barest minimum of aid a civilized society can give and still claim to be civilized (though I'm not too convinced by said claim). Through my sister Tammy, I get to see a bit behind the surface of black America and just how racist a society we remain, as well as the hope and love in people working to soften its impact.

As a Christian who grew up evangelical Baptist and converted to the Byzantine Rite of the Catholic Church on Pentacost of 2000 (is that not the coolest chrismation date ever?) but who is also learning about Buddhism and Taoism through treatment for CFIDS/ME, as well as spent a lot of time learning about Islam when I studied Arabic and Judaism when I studied Hebrew, I'm trying to learn to look behind the surface of the literalism I grew up with and towards the dynamism of a relationship with God. This is particularly challenging for me as an academic who has been trained to think critically. To deconstruct any text (and you'd be surprised at what I can turn into a "text'). At the moment I'm working at trying to be less intellectual about my faith and to feel it a bit more.

So, here's to life behind the surface...

Comments

Anonymous said…
hI, mICHELLE,
i AM FROM THE cfsfmeXPERIMENTAL LIST.
Glad I checked your blog out.
"Feeling it" is not a big enough concept for faith although that is part of it. The experiencing of it, I find, is, yes, feeling, but something more that I don't know the name of. Another category of experience.
Also, doing faith is a critical part of it.
Adrienne
3D said…
Hello,

Read your blog. Sympathize with your plight, been there, done that.. years ago, when you were automatically considered a hypochondriac and referred to shrink. Medical community is no longer in denial, but Tomato Effect is still alive and well.

Mine was precipitated by pesticide exposure in my home. Only sheer, dumb luck, or Divine Grace, led to my discovery of it while doctors were clueless. This led to a whole host of sensitivities.

On the mold issue, that came later, nearly killed me. Again, grace or luck, and I discovered it along with some more banned pesticides.

Same problems with books, and newsprint, and...I was in grad school for library science.

In any event, this link will take you to an article from a librarian's newsletter. Don't let the date deter you, the content is relevant. Librarians know everything!

http://palimpsest.stanford.edu/byorg/abbey/an/an18/an18-
6/an18-602.html

Good luck. And take control of your own health.
Jack Stephens said…
Hey Michelle, I caught your comment on my blog post "Students Stranded in Gaza" at Alas, a blog. I checked out your blog and like it a lot. I myself have my own blog, "The Mustardseed." at http://www.mustardseedblog.com

I'm a Christian myself. I'm a postulant for the priesthood of the Episcopal Church and I study mostly Liberation Theology and white privilege. I'd e-mail you but I don't see it anywhere. Let's keep in contact my Christian sister. Peace.
Anonymous said…
What a fascinating story. I'm glad I found you!

Popular posts from this blog

The Dying Days

Healer of my soul Heal me at even Heal me at morning Heal me at noon Healer of my soul Keeper of my soul On rough course faring Help and safeguard my means this night Keeper of my soul (John Michael Talbot) There was an episode of the X-Files -- one of the later ones -- where the villain was this guy who would kill his victim by sucking the life out of them. He'd open his mouth and you could see this gaseous form, the person's spirit I presume, slowly come out through of the mouth of the victim and then suddenly they'd collapse dead. That's what having CFIDS is like. Yeah, I never die, though there are days when it feels like I will -- the Dying Days. Like someone is sucking the life out of me just like that guy from the X-Files. Like someone missed something somewhere and now I'm going to slip away. It has happened. Casey Fero of Wisconsin, who had been diagnosed with CFIDS, died in his sleep last summer. The autopsy showed that he died of ...

A fat girl goes wooing

Some of my earliest memories of doctors involve the pediatrician we saw when I was seven or so. He put me on a diet in which I couldn't eat corn (my mom only cooked three kinds of vegetables: green beans, carrots, and corn so that eliminated a third of my vegetable choices) and had to drink these Sego shakes that tasted like chocolate and vitamins mixed together. I also wasn't allowed to eat the candy hearts my Girl Scout leader gave me for Valentines Day while my skinny sister could. At ten years old I was pushing 120 pounds and the new pediatrician I had was particularly peevish about obesity, as the nurse in a quiet, frightened voice warned me after weighing me before he came in. Dr. P scolded me in a voice that was about as scary as my browbeating stepfather. He demanded to know how much I was eating (not any more than my scrawny siblings) and how much exercise I was getting (two-mile-round trip walks to school as well as kickball at recess). "You're lying," h...

The gifts of illness

It's the annual CFIDS Awareness Day (well, tomorrow is but today was the lobby day -- which I did "virtually" at the CFIDS Association ). Last year I shared what I've lost having CFIDS, but this year I thought I'd be a little more upbeat and share what is good about being sick. My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet. An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cra...