What's Next?

And who's that little fellow in the corner?

When our flames touch, we have nothing to fear.

“I’m so scared,” Cora whispers. Her threadbare voice sways between us, delicate and fragile as a cobweb. I take her narrow, blue-veined hand in mine and caress her paper-soft palm with my thumb. Cora grips my hand with surprising strength, her gold wedding band pressing into my knuckle. Her big eyes are wide open, two grey lakes shimmering in the pale landscape of her face. Amidst the ravages an aging face must endure, why do eyes remain so much the same?  Shining through them, I still see the hopeful young woman she once was. I also see the calm depth of her intelligence. She still exudes confidence in her thinking—despite the tangled fireworks that sometimes engulf her brain.

Cora gazes at me with the solemn eyes of a five-year-old who expects some explanations. Is there a monster under my bed? Why did I have that scary dream? Are you going to make me safe again? 

“It’s ok to be scared,” I say. “You are not alone! I’m here to sing for you today. How does that sound?” I tell her I know her son Matt, that we had been friends in high school.

I point to the old photograph taped to the wall at the foot of her bed. Matt and a man who must be Cora’s husband lean against Matt’s first car, smiling in a long-ago moment of sunshine.

She contemplates the photo and then turns her gaze back to me. “Did you have a crush on him?” she asks. This makes me smile. For a teenage moment, I did have a crush on Matt all those decades ago. How did she know?

I had first met Cora several months earlier, but I didn’t expect she would remember me. “Where have you been for so long?” she asks. She does remember!  “You have such a beautiful smile,” she says. “It’s so good to see a kind face.” 

I sing a bit for her, but she wants to talk. She cannot feel her feet. Her neck is killing her. “I never knew I was such a coward!” she says.

“We all get scared sometimes. We never know what’s happening next,” I say. “Remember, you’re beautiful and strong and brave! And you’re not alone.” I hope the music might ease both the emotional distress and the physical pain. I tell her I’ll ask her nurse to check to see if she needs more help.

Cora keeps reaching out for physical contact, so I lean my guitar against the bed and take both her hands. An old folk song I used to sing with my sister and father comes to mind. I sing softly, still holding her hands.

Little Birdie, Little Birdie
Come and sing me your song
I’ve a short time to be here with you
And a long time to be gone.

“Do you think it would be ok if I had a little nip?” she asks with a mischievous smile. “It’s fine with me,” I say, although I know there is no secret pocket flask hidden under the bed, no airplane bottle of gin tucked into a purse. No purse anywhere nearby—just a bed in a room. Did Cora used to have a little nip when she needed to numb her fear? What has she been afraid of? Why does she think she is a coward? Has her fear, now raw and unmuted by alcohol, always been there?

Cora suddenly sits up a bit, her body becoming rigid. “Who’s that little fellow over there?” she says, pulling one of her hands from mine and pointing to the far corner of the room. “He’s right there, in the shadow!” I follow the invisible line from her finger with my eyes. “He’s been with me awhile,” she confides.

Who is that little fellow in the corner?

As we contemplate the corner of the room together, I imagine a squat, smiling gnome, the genie of the place keeping an eye on Cora. “He looks friendly to me,” I say. “I don’t think you need to be afraid of him.” She nods slowly, continuing to stare at the little fellow only she can see.

Cora says that people here are good to her, but she wants to go home. “I will get out of here!” she says, pressing a fist into her blanket.

She is right. Her residency in the nursing home will come to an end. Sooner rather than later, there will be a final day. It’s obvious that she has always a been a determined and strong person. Feeling the intensity of her longing, I almost believe that she will get out of here alive—I want to believe her.

But I know the truth. She will never return to the life she used to live. She will never again complete the New York Times crossword puzzle. She will not even remember what it is. She will never have a conversation with her husband about the news or a book they both read. She will never remember the names of her grandchildren.

She knows this plain room with a bed is not “home,” but she also doesn’t remember what home looks like. It is the feeling of home that she misses. A deep longing so strong that she vows she will find her way back. I feel a stab of sadness for this terrible loss, this degradation of such a vibrant and intelligent personality. 

But that makes me wonder: what is a personality, anyway? Is my personality merely a distillation of everything I say and do? Are personalities only elaborate costumes we present to the world?

I am a dog person.
I am a doctor.
I love jazz.
I’m a conservative.
I listen to NPR.
I am an artist.
I have bipolar disorder.
I am an Episcopalian.
I’m an excellent driver.
I tell it like it is.
I can’t stand broccoli.

And on and on and on, over and over.

Our personas provide a conduit for social engagement, a way to connect to others and place ourselves in society. But what is behind all this personality, all these self-definitions? Could there be a pure flame burning within us that has nothing to do with all we say and think that we are? Does this flame keep burning, no matter how much we are ravaged by illness and pain—even dementia?

All the bustle, all the layers of ego, all the “little nips” and other addictions can never entirely obliterate the fear we wish to silence. Maybe we keep busy constructing our personalities to avoid some faceless dread we hide behind our masks. It is scary to let the intricate trappings of Self drop away. It is probably even scarier when you don’t have a choice, as is the case with Cora. 

I may be more functional than Cora. I may know facts and concepts that she can no longer grasp. But we are not so different: we both face the unknown. We both suffer. We both face death and the deterioration of our bodies. People with dementia are often more fully present in the moment, especially with music as a connecting thread. Like small children, they make intense eye contact without embarrassment. Because they have forgotten to hide, they can simply be present.

Dementia steals from people and devastates families, but it also can bring small graces. Cora may be changed, but she is still here. When I am singing and looking into her eyes, she meets me completely. The encounter is beautiful, priceless. She reminds me that we can shelve our agendas and plans and personas. We can just be.  

Cora falls back into the pillow and closes her eyes. She needs to rest. It is time for me to go. “I love you!” I say, stroking a wisp of grey hair from her forehead. Her face softens and calms. I imagine her mother stroking this same forehead many years ago when it was supple and unlined, perhaps flushed and damp with fever. A woman I have never met, long dead, is momentarily in the room with us. I remember the soothing touch of my own mother when I was frightened or sick. A gentle presence of love settles around us.

For now, the fear has evaporated from the room. “Come back,” she calls to me, looking up dreamily from the pillow. “Come back soon!” 

Cora, I don’t know who is standing in a shadow in the corner of your room. I don’t know what happens when we die. I don’t know what will happen next in my life or your life. Sometimes I am scared too.

But then I remember the pure flame of love inside me, inside you. When our flames touch, we have nothing to fear. 

Tahoma sunrise off the Steamboat Island Bridge