We Are Stories, Not Symptoms

by

The physician’s assistant (PA) was sharing the results of an evaluation of Linda. We were seated at a table, with Linda beside me and the PA across the table.

Looking at me, the PA said coldly, “Mr. Carder, your wife is no longer the person she used to be.”

She went on to describe the symptoms of Linda’s dementia—lost memory, disorientation, confusion, agitation, inability to focus and solve problems, loss of language skills, etc.  All the while, her eyes were on me, as though Linda didn’t exist.

I noticed Linda’s growing agitation and restlessness–the glare in her eyes, the rigidity of her body, the scowl on her face.  I knew that look. The PA was about to learn something she missed in medical training.

Linda straightened in her chair, looked squarely at the PA. Slowly, firmly and deliberately, she said, “Talk– to– ME!”

Taking Linda by the hand and smiling proudly, I said to the stunned expert, “You just met Linda.”

I added, “She isn’t a disease or cluster of symptoms. She’s a person you don’t know. You only see her symptoms. I know her story.”

Regrettably, the PA reflects a prevalent lens through which people with dementia are viewed. They are seen as a medical diagnosis, a disease that robs them of identity. They’ve “lost their mind!” They aren’t fully human. They have impaired memories, so they have no identity. They can’t produce, so they have no value. They can’t reason and relate, so they don’t belong.

Here’s the point:  We are stories, not symptoms or categories or labels!People never fit neatly into the margins of any lens or label or category. Stories are always complex, multilayered, intertwined, and unfinished.  And, we don’t really know another until we know his/her story.

We try to force others within our narrow margins of perception, especially those not like us. Those outside the margins of our theology, politics, class, race, ethnicity, culture, or sexual orientation are treated as objects of our margin-justification efforts. We speak past them, about them, against them, around them, and down to them. We seldom speak to them and almost never listen to them, learn their stories.

I’m learning anew that every behavior has a story behind it. When Linda was first admitted to Bethany, she was awakened every night by another resident who kept coming into her room, turning on the light, adjusting her pillow, and speaking garbled words to her. It was frightening to Linda and disruptive to staff. The intruder’s behavior didn’t make sense. Or did it?

Mary (not her name) was a retired nurse! Her behavior now made perfectly good sense; she was working the night shift and Linda was one of her patients.

Shortly after Linda entered the memory care facility, I wrote a letter to the staff. In that letter, I shared some of her story and why she is important to me. I wanted them to see her as a person with a story worth knowing. Treatment of her changed. They came to see her as more than a category called “dementia.” They see beyond the symptoms; they see her as a person.

Here is the larger point: We don’t know another until we see him/her as part of God’s Story. God’s Story simply will not fit neatly into any of our categories-medical, religious, doctrinal, cultural, political, or otherwise!

Until we see others as part of God’s Story of Creation and Redemption, they will be but identified symptoms and labeled categories. As symptoms and categories, they can be pushed aside, devalued, scorned, defeated, and feared.

But they/we are participants in God’s unfolding Story of creation, liberation, reconciliation, restoration, and transformation. That’s our identity, our worth, our dignity, and our destiny.

Retired United Methodist Bishop Kenneth L. Carder current serves as chaplain at Bethany memory unit at the Heritage at Lowman senior community near Columbia, S.C. He blogs at Shifting Margins, from which this post is republished with the author's permission.