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Sunday, February 21, 2010

Music from another room.

I need this space, this new Blog, this place where I can gather my thoughts and write through my experiences with hospice. I've often thought deeply about those moments when I am sitting next to another human being who is dying, while I am reflecting on who I am now, and who I hope to be when I die - as if I can assume my death is so far off into the distant future that I would have time to transition into who I hope to be when I die.

I think often about what music I would want playing, who I would want in the room, what I might have just recently eaten. Those questions might seem bizarre, but they are questions I thought about with one patient in particular. Her name was Susan.

On our first few visits, Susan was awake, cognizant, and what most of us would think of as living, not dying. We talked about what she liked to do and I soon learned that she was an avid Yahtzee player. We talked about her family, a sister-in-law who lived far away, a brother. She didn't mention kids or parents, and I didn't ask. Her sister-in-law was a teacher.

I would leave from visits with Susan with little knowledge about her life, other than her cravings for raspberry iced tea, her relationship with her sister-in-law, and her interest in playing Yahtzee. I didn't know much, but we were building a relationship.

A week went by, and I went to visit Susan again. We talked about the blanket her sister made and sipped raspberry iced tea. I brought her a Yahtzee game, but Susan was too tired to play, so I put the box up on her dresser, suggesting there would be other visits when we would play. While I was setting the game aside, Susan began to cough and reach for her bowl. I watched helplessly as her frail body heaved, and she threw up her raspberry iced tea. I quickly grabbed some towels and patted her mouth dry, while I tried to breathe out my nose to block the smell. It was in that moment that I realized I could never be a nurse. I quietly coached myself not to think about what was happening so I wouldn't start getting sick as well. Susan finished vomiting and looked into the bowl. She smiled and laughed, feigning pride in her ability to throw up iced tea when she had nothing else in her system. She smiled at me and I smiled back, though we both knew that in this moment, it was quite the opposite of pride that Susan was feeling. I took the bowl away and washed it out. Susan decided she needed to sleep, so I went home.

The next time I went to go see Susan was after I had received an email that Susan was on her final days. Doctors concluded that Susan was most likely within 48 hours of her death, so I went to sit with her during her final moments. I arrived at 8:30 on a Friday night and sat down next to her bed. Her eyes were half closed, her mouth half open, and I reached for her small, cold hand. The illness had deteriorated her body, so that her bones were visible on her face and hands, but her arms were swollen from excess fluid. Her disproportionate figure suggested that she was in pain, but her deep breathing sounded peaceful. I held her hand and stroked her arm, telling Susan that I was there by her side. After a few minutes, Susan opened her eyes, and although I assumed her breathing was peaceful, her eyes told me that she was afraid. Open wide and unblinking, Susan's eyes finally rested on me. "Susan, it's me Sarah. I'm going to sit with you for a little bit tonight. Okay?" Susan nodded, but didn't say anything. We sat there for a while in silence and every few minutes, Susan's eyes began to soften and the fear seemed to be lessening.

I asked Susan if she wanted me to play some music. She nodded, and I selected a CD from her nightstand. I turned the CD on, and ragtime music began ringing into her room. I stopped before going back to my seat, trying to decided if I should put a new CD in. I couldn't help but think how bizarre it was to play old ragtime, get-up-and-dance music, while this woman was laying here dying. I wanted desperately for her to be at peace but that seemed impossible with the music I had just turned on. I turned the volume down slightly and turned to Susan. "Is this okay?"

Susan didn't respond.

I decided to just sit down and hope that my presence and hand-holding would provide the comfort the music might not. And while Susan dosed off, I began to seriously consider what music I would want to die to. I don't consider this thought to be morbid. We will all die someday - that's why the title of this Blog - "as WE lay dying," but do we all think about that moment before it happens? What was Susan thinking? Did she ever imagine she would die to ragtime music? Was this music playing when she was experiencing something earlier in her life? Did she have her first kiss to this song? Break up with her first love? Stay up all night with her sister-in-law reminiscing about the good ol' days? And what does this music do now? Comfort her with old memories? Remind her of a past she'd soon like to forget? Inspire her for a future she cannot have?

Eventually I was preparing to leave, so I turned off Susan's CD. I sat back down to tell her I was leaving soon. She spoke for the first time that night. "Wake me up if I fall asleep. I want to be awake the whole time you're here." I told Susan she could sleep, that I wouldn't mind, but she insisted I keep her awake. Susan also told me she didn't want to be alone.

I couldn't help but be reminded of the kids I used to babysit in Las Vegas. They too, did not want to sleep when I was there, afraid they might miss out on something, and they often didn't want to sleep alone, afraid to be by themselves. And here was this woman, who was much older than both of those children and myself, asking for the same company. I told her I could stay for a few more minutes and that I would be back the next morning to visit.