Beyond Diagnosis – Causes of Life

“Your mother must be proud.”

“My mother is dead,” I respond. I used to respond tentatively, voice lowered to reduce their embarrassment of asking a totally legitimate question that quickly blossomed into awkwardness without them knowing what they were walking into.

“I’m sorry.”

Now what do you think happens next?  My mother has been dead for some time now but when I was younger, the next question was almost always the same.

“What did she die of?,” they’d sincerely ask.

My response was so well practiced and was so easy to recite because that’s where all conversations about my mother began and ended: “Brain cancer.”

The concern with how someone died—or the death diagnosis—isn’t just about what happens in conversation with strangers. When my son was younger, he would see pictures of my mother around the house, and innocently ask, “Who is that?”

“That’s my mother.  Your grandmother.”

“Where is she?”

“She’s dead.”

“How did she die?”

“She died of brain cancer.”

He then continued his line of questioning, got down on the floor and reenacted what he believed must have happened.  “Did she die like this?”—picture him lying on the floor arms spread out.  “Were her eyes open or closed?,”  he genuinely asked without knowing he was walking into territory everyone thinks about but no one dares enter.

Since my mother’s death, I’ve found myself stuck in a modern paradox I didn’t anticipate: How can I explain my mother’s life when that means explaining who she was and how she impacted me—not how she died?

. . .

I have to confess that I broke a sacred rule of the digital age.  I threw away all of the images of my mother when she was dying.  Don’t get me wrong.  I had the privilege of spending the summer with my mother and father at home—as she bravely endured radiation treatment to no avail.  I didn’t destroy the images because I was embarrassed. No.  My pictures of that summer only showed what she was losing—her ability to walk. Her capacity to move.  Her memory.  Personality.  Voice.  Sight.  Before I got on the plane saying my final goodbye to mom—I decided to destroy my images of her that summer because I was simply afraid that the images of her dying would get stuck in my mind and prevent me from remembering anything else about her.

I was wrong.

It’s not simply our images that shape how we remember those we love, but it’s also the way we allow illness diagnoses to be the beginning and ending of how we talk about and understand our loved ones.

“What did your mom die of?”

“What type of cancer did your mother have?”

“What was the exact type of brain cancer—was it glioblastoma?

“How old was she when she was diagnosed?”

“What stage of cancer did she have when she was diagnosed?”

Medical diagnoses are incredible tools for pinpointing, with detail and precision, what is wrong and where it is occurring in our bodies so we can efficiently marshal technological resources and experts to respond.  But what I’ve learned over the years is that the power of medical diagnoses also shapes our individual and collective memories long after death.

In the 21^st century, all of us will be diagnosed with something.  Medical diagnoses have become the universal rite of passage as the proliferation of conditions and diseases and cancers advertise our incredible ability to map the seemingly unending terrain of the human body.  But diagnoses don’t only shape our attention and responses before death.  Their power lives long after death in ways that make it more difficult for us to create understandings of our loved ones beyond medicalized terms.  Beyond cells.  Beyond body parts. Beyond pathology.  Beyond cause(s).  Beyond diagnosis.

. . .

Untangling my own memories of my mother from her brain cancer diagnosis has been a work in progress.  I’ve spent years trying to rethink our culture’s preoccupation with causes of death.  Talking about diagnosed body parts and pathologies can connect us to one another as we find commonality through a shared enemy.  But this is just one way of talking about our loved ones—not our only way.

I no longer speak of the causes of death.  I speak of the causes of life. Strange, I know. Trust me, I get lots of weird looks from well-intentioned people who want to know why my mother died so young. In other words, they want to know what she was diagnosed with that led to her death.

My way of re-claiming my mother from medical terminology means flipping the script of questions that we’ve all willingly recycled because it’s become our default way of talking about death.  It looks simple enough, but it’s really hard—or let’s call it awkward at first—to talk about causes of life rather than death.  Most of the time, I find myself responding to questions that no one ever asks me, so I just interject them.

So when I’m asked, “What type of cancer did your mother have?,”  I give them the obligatory response of brain cancer. Then, I then keep the conversation going by responding to one of the following questions that, sadly, no one ever asks me . . .

What moved my mother? 

Who moved her?

What motivated her?

What connected her?

What inspired her?

Who did she inspire?

Connecting my mother to what connected her to life—family and friends and religion and writing—helped me get unstuck from the trap of medicalized language that locates my mom as if she were reducible to her diagnosis.  Trust me, it’s led to some awkward interactions but when I leave the interaction, I’m more fulfilled.  I feel more whole.

I even flip the script with my children (this process of learning how to talk about my mother has taken so long that I now have two children).  I will show them a picture of my mother and begin explaining the wholeness of their grandmother that can’t be understood by parts—but by her connections to others . . .

“Who is that?”, I ask them both.

“That’s your mommy,” they respond.

“Yes, she’s also your grandmother.  Do you know what she lived for?,” I ask.

“No?”, they respond in unison.

“Family. Did I tell you the story when my own siblings and my mother . . .”

My mother died of brain cancer. This is important to know. But my mom lived for so much more. This is important to know and remember too.  Death diagnoses, like brain cancer, are essential to advancing medical knowledge.  But, after death, medical terminology isn’t enough because it’s designed for technicians—not sons, daughters, mothers, fathers, and friends.

Explaining how and why my mother lived is what I now lean on to explain my mom to the world.  She was my storyteller.  Now, I know I’m continuing her story because her story can’t be contained by diagnosis alone.  It’s not only a story of cells and body parts.  It’s a story about mom and me and so much more than can ever be seen under a microscope.