Tuesday, May 13, 2008

what is suffering?



I cannot fully grasp the suffering in China, Myanmar, or even in Oklahoma after the tornadoes…

I always have a sense that because I have suffered personal tragedy I do not want to turn my back. In a way it feels hypocritical to have cried out to the world in moments of despair to now stick my fingers in my ears and deaden myself to the fact that others are trapped and suffering. I cannot be there to pull anyone from the rubble. I understand that physically this is not my place in the world anymore. What I can do is to try to pull down or understand suffering at a human level. (current massive tragedies are at the global level).

Here’s what has been going on in my personal world. Something that has affected me and I still struggle with. My goal or purpose is not to preach, just to make you think. I will return to happier Mondays soon (next week?) but today I’m just trying to sit with the sadness.

I had been away from Melissa’s room for too long. There’s something about the smell of pee and human feces that will do that. There’s always a fan blowing those smells around and stuff stuck to the floor. This day was different. Notes for the staff had been re-written and lined up on the cork strip above the bed. There were fresh new photos of smiling faces, a little girl in a pool with her dog both wearing goggles. The nightstand always littered with handiwipes, straws and sponge swabs now it was decorated with flowers. Melissa’s Bible sat tattered and frayed keeping order. (Usually it had been overturned or inadvertently stuck in the fall-between places in her wheelchair or adjustable bed). Lying underneath the bed were boxes of Melissa’s favorite snacks; Oreo cookies, Nutter Butter cookies and a case of pop. Items hard to come by in a nursing home and general standing requests to anyone coming in from the outside world-“Could you bring me some Oreos?”

"Melissa have you had a visitor?" I couldn’t make out the words in her reply. Like I said I’d been gone too long. Melissa’s words are something that take time, patience, and persistence. They take practice to catch. My ability to catch them had atrophied away like a muscle. Counting the number of family photos I quickly guessed “was your mom here?” Melissa said nothing about her visitor from Georgia. She didn’t need to this sign said it all “Melissa’s teeth are to be brushed and flossed everyday.” I should have known only her mother would have the audacity to add the “and flossed” like a school teacher’s marking to the paper. Melissa was seldom visited, often forgotten. Something sad that happens when you’re 1,000 miles away and in a nursing home?

So much for mothers who lift the bumpers of cars off their dying children I guess. If I could have penned a note, here’s what it would say- Dear Melissa’s Mom. Your daughter is dying. How important is the floss?

Mom had visited.

There was an overdue notice from the public library stuck to Melissa’s side. She let me know that the social worker had taken her to the library. The notice read Crash. That’s not an easy movie to follow for someone struggling with focus and sometimes foggy thinking. I asked Melissa how it was, she said she enjoyed it. I smiled not for the movie review but imagining her moments of freedom in the outside world. "What was it like for you busting out of here for a couple hours?" Frustrated, I couldn’t understand Melissa’s response. Since I’d been away her speech had declined, the words were more garbled. In a panic, in a haste, I went to the TV to look for the DVD. I thought I might return it or stick it on the nightstand with the notice for someone to see. Maybe even a sign PLEASE RETURN ME.

I walked over to the TV sitting on top the second-hand dresser and looked up. There’s a Hospice certificate on the wall? Fear and dread stuck in my gut. Melissa had requested Last Rights. This request received and granted. Why did they only listen to this one and not the millions before?

Melissa is more at peace now. Not because she’s achieved this through spiritual practice or religious study but because her disease is progressing. She reached a point where her body has failed to provide her with the energy for her fight and struggle. Some folks say this is a blessing. It’s when the healing within the dying finally starts to occur. Their care givers feel relaxed as their loved one finally rests. No! (the word screamed in my head) I see this as a painful injustice. She never had the chance to be heard and actually live out what she was fighting for…What did she want? What was her struggle? She wanted to get laid. Wanted to shop and have people over for dinner parties. Wanted to be listened to when she expressed her intelligence. Wanted to be heard when she expressed a simple need or preference.

All gone now that her acting out behaviors left her without people around her who could practice patience before listening. She was left in a position of no adult intimacy or connection. Something I’ve tried to provide her with…one area of my life where I have clung desperately. (Where I have not failed!)

How long will this continue? It’s a frequently asked Hospice question. Thankfully they provide answers. Six months is a typical Hospice stay. With Melissa I wonder if this is true. It is just as likely that those in charge would have consented to Melissa’s request just to make her stop asking. This could be like watching a prisoner needing multiple zaps to die in the electric chair.

Melissa’s condition is worsening but she’s a fighter. only repeated ignorance and neglect seem to really take her down.

The lesson I’m learning in watching her death?


I’m afraid of her dying, I’m more afraid that this won’t happen.

(The above photo is Melissa's Bible. she's asked me to fix it before my next visit, uh any suggestions?)

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