Skip to content

The Long Defeat

July 25, 2015

There are things people tell you when you have a painful chronic illness to keep you from falling into a depression over your circumstances. They say, “This too shall pass,” altogether ignoring the “chronic” element of your condition. They tell you, “Well, you look great,” which is only rewarding if you enjoy busting your ass to keep up appearances while you suffer. They say, “Other people have it worse. Think about how those folks have to get up every day and face the world without a leg, or with cancer,” or whatever else it is they fear might happen to them one day. Those fears are always worse than what you have because what you have, they will not face. At least, not when it is happening to not-them.

A few years’ back, at the end of my regular appointment, my rheumatologist asked me, “How do you stay positive and hopeful about all this? You have a good attitude. I have some patients who just can’t seem to cope.” For her, “coping” meant something different than it means to me. “Well, I’ve had RA since I was two years old. I guess maybe when it’s all you know, it’s easier to deal with?” I said, theorizing as I have many times before when I encountered someone who was devastated by a mid-thirties diagnosis. My answer felt inadequate, so as I was paying the bill, I doubled back, with the words of the apostle Peter in my head, “Always be prepared to give an answer to everyone who asks you to give the reason for the hope that you have.” I popped in as she was wheeling her computer into another patients’ room and told her, “I have hope because of Jesus. That’s really what it is.” And it’s true, but not because He makes me H-A-P-P-Y like a pastor I know used to say. Jesus helps me cope because in Him, I serve a disabled God.

cross

I know what my doctor wanted from me: a prescription she could give her struggling patients. I’ve been lobbying alongside rheumatologists for several years now and one of the reasons they go into rheumatology is the challenge of the discipline. Rheumatic diseases are a moving target that affect entire systems, not just bones and joints. Every rheum doc I’ve met has an investigative mind. They love the puzzle. Every visit includes at least one reference to “the literature,” journals and conferences they have devoted themselves to, in search of elusive treatment options. The medicines they give us also kill us, in a way. Immune suppressants work precisely because they shut down a system God made to protect the human body from outside attack. How do you shut down an attacker from the inside without harming the patient? Rheumatology is all about trade-offs. There are wins, but they are always risky and usually temporary.

Your doctors know that, as do your caregivers. They sit with you while you weigh the risks of each regimen. “This drug means more lab work. That one could cause ulcers. I have to have that special eye test with that one. What did the other pamphlet say about cancer?” These are conversations no one wants to be having.

Your caregivers see you suffer. They know your battle better than almost anyone. Like the doctors, though, they still see it from the outside. Like the doctors, even the most empathetic caregivers will falter in their support. Their frustration over the disease will manifest as a frustration toward you. They know that you’re prone to fatigue, but that won’t necessarily prevent them from occasionally telling you to “get off your butt and do something.” Outsiders can forget and disability brings an incredible amount of scrutiny in our culture. Frauds are everywhere, they think. It’s too easy to fall back on those ableist ideas. Even I do it to myself most days.

Your caregivers and doctors are also well-aware that chronic pain can trigger depression. Despair is not irrational in this situation. In fact, it makes perfect sense that a life of physical pain would send your emotions and thoughts to darker places. Yet this fact frightens outsiders more than all the drug risks do. An immune system turned against the body is far less daunting than a mind turned perpetually inward. As little as we know about rheumatic disease, we understand even less about mental illness. Sometimes they will want to talk you out of your emotional pain, distract you with other things, like they do with physical pain, when they tell you to turn your head as the needle goes in. They don’t want you to grieve even when grief is inevitable. They have an abled understanding of health, so they want you to be problem-free. Fixed.

healed
My rheumatologist wanted to know what she could say to her patients who cannot cope because to her coping looks a certain way. Calm on the surface. But that kind of coping only renders invisible the feelings about invisible illness. That coping is a cover that makes outsiders feel better, not the patient. Honest coping is not without struggle. It is not without loss. Many times it involves staring straight at the loss and naming it; wrestling it all the way down to the ground like Jacob until we are blessed by it. Like mine, Jacob’s hip was broken in the battle.

This is one of the reasons my answer to her that day was Jesus. He understands death and disappointment. He understands having to explain suffering over and over again, and still have the hearers deny its truth and its value. He knows what it is to entrust your body to people who will likely abuse it in pursuit of a cure for disruption (even when they don’t realize that’s what they are doing). He knows what it is to watch your people leave when it gets most physically painful. He knows what it’s like to have a few of them who stay to watch, bewildered and devastated by what is happening to you. Christ knows what it is to be scrutinized, examined, stripped down and humiliated. And He knows how exceptional it is to be anointed, lovingly attended by those who see you as sacred. He’s been where I’ve gone and where I’m going. He knows the struggle is real, and wailing and wallowing in an otherwise lovely garden are a necessary step in the journey.

When well-meaning people try to pep-talk me out of the struggle, I usually nod my head and smile. Sometimes if I have the energy, I’ll push back…hard. I unload every worst-case scenario I can imagine. In those moments of rage and grief I’ve been told by the frustrated party, “there’s no winning with you.” Believe me, I know what it’s like to contend with a foe that is full of bad news. It would be nice every now and then to have someone from the outside join the long defeat.

Lyrics, Sara Groves, “The Long Defeat”

I have joined the long defeat
That falling set in motion
And all my strength and energy
Are raindrops in the oceanSo conditioned for the win
To share in victor’s stories
But in the place of ambition’s din
I have heard of other glories

And I pray for an idea
And a way I cannot see
It’s too heavy to carry
And impossible to leave

I can’t just fight when I think I’ll win
That’s the end of all belief
And nothing has provoked it more
Than a possible defeat

[Chorus]

We walk a while we sit and rest
We lay it on the altar
I won’t pretend to know what’s next
But what I have I’ve offered

And I pray for a vision
And a way I cannot see
It’s too heavy to carry
And impossible to leave

And I pray for inspiration
And a way I cannot see
It’s too heavy to carry
And impossible to leave
It’s too heavy to carry
And I will never leave

Advertisements
No comments yet

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: