20 March 2015

3 years, or when enough is truly enough

Yesterday was a milestone of sorts.  Here is what I wrote:


Today is a funny kind of anniversary, bittersweet and strange.

A little over three years ago, I went to Sierra Leone and came back with malaria-like symptoms.

Exactly three years ago -- March 19th, 2012 -- I was nearly paralyzed by an unknown illness.  And it's been a long road since then.

In the beginning, I played the "what if" game.  What if I hadn't gone to West Africa?  What if I hadn't gotten sick?  What if I hadn't eaten that burrito (the mundane dinner I had that "fateful" night)?  What if I had just finished my thesis when I was supposed to instead of extending it one semester more?

The what if's went on like a broken record and eventually wore themselves away.  It became clear to me in my grapplings that this was a futile mental exercise, resulting more in my own increased exhaustion and stress levels than doing any good.  Worry eats at you like a ... well, like a disease.  It takes hope and twists it into despair.  My family and friends in the faith reminded me to put everything into God's hands, a phrase that is paradoxically deep and shallowly cliche.  I looked around me and wondered, where are His hands?  With a day-to-day that was so tangibly painful and difficult, it was hard to see the divine yet invisible around me.

These days, I am not healed and 100%, but I am better than before.  There are good moments and bad moments, aggregating into pretty good days, so-so days, or just plain bad days as a lump on the couch.  When people ask if I'm doing better, if I'm back to "normal," my response is usually, "Not really ... it's hard to tell ... we'll see."  

What is "normal," anyways?  That word has almost become meaningless.  Before, I used to think "normal" was going back to how I was feeling before my trip, or even before the end of that trip.  Being able to do whatever I wanted, eat whatever I wanted, and do my daily work without a second thought.  Nowadays, "normal" is managing my symptoms and regulating my activities so that I can have a day I enjoy.  Despite how much I want to be healed, normal is no longer equated with wellness.  I can be "normal" and still have a dysfunctional body.

The mental exercise that has taken over, though, is the "enough is enough" game.  It reflects my frustrations with doctors without answers, chronic pain that keeps me up at night, the state of illness that keeps me from finishing my degree, friends and family who don't understand -- and just everything else that stinks in the world.  Who hasn't -- aloud or in their minds -- yelled "Enough is enough!!!!!!!" at some point, fed up with the meager portion life has doled out?

There is so much that is simply wrong.

Then there's the creeping feeling that I'm not doing enough.  When it comes to chronic illness -- particularly illness that is not very well understood, diagnosed, or agreed upon -- there is always more to do.  More doctors and specialists who might have the answer.  More research to be done, more medical papers to read that might shed light on my condition.  More super foods and supplements to consider that might help decrease the inflammation in my body -- and give me shiny hair and skin as a token bonus.  The phrase "you are your own best advocate" is a blessing and a curse: it can empower just as it twists into a despairing obsession.  There is always more, more, more to get better and you are never doing enough to get there.

There is so much that is simply not enough.

But today as I was reflecting on this illness anniversary, I realized the true genius in this phrase.  As much as it embodies angst, suffering, striving, and real sorrow, there is also a glimmer hidden in there.  "Enough" can be "enough."  "Enough" is what I'm able to do in a single day, whether it's actually do some design work on any given project, or lie in bed.  "Enough" is managing to go outside and feel the sun on my face, even if walking to the end of the block leaves me weak and dizzy.  "Enough" is remembering I have intrinsic value as a woman, daughter, wife, student on leave -- as a human being, as a daughter of God, who sustains me.

Enough is simply breathing.
Enough is simply taking one step at a time -- literally.
Enough is simply - difficultly - stubbornly - living.
Enough is simply being who I am.

Anything I put in is enough.  And what I get out of it can be enough.

Enough is truly enough.

And when I can't remember this, I will come back and read this post.  I'll talk with people who love and care about me.  I'll find people who can understand chronic illness, long-suffering, and perseverance.  I'll reread my journal, my lists of praises alongside the prayers.  I'll squint to see the glimmer in the shadows.

And then I'll remember, and take the next step.


Some interesting reading / listening:

Toni Bernhard on learning to live a full life with chronic illness

The new first world problem of chronic illness (although some would argue it's no longer "first world")

"You look so good!" and other faux pas in invisible illnesses

Romance and chronic illness, uneasy bedfellows

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