Karuna Grand Opening Speech - World AIDS Day 2008 

 

Stories to Live By: 
(World AIDS Day 2008 and the Grand Opening of Karuna)

by

Jenaia Morane 

Barry Lopez, award-winning author of Arctic Dreams, has this to say about stories: "If stories come to you, care for them. And learn to give them away where they are needed. Sometimes a person needs a story more than food to stay alive."

 

Once upon a time, in the last bright days of summer, a leggy sunburnt child of eight  - whose parents despaired of ever getting her to wear shoes or eat anything but pizza - acquired a new friend.  The friend's name was Sarah.  She was six, but with her enormous head, gray-green eyes sunk deep in their sockets, and wispy blond hair, she looked ninety.  In order to walk, Sarah had to wear braces on her legs, and she moved with the jerky, uneven steps of a badly controlled puppet.  Sarah, her mother explained, had a disease called Alexander Syndrome, which meant that her brain was gradually becoming too large for her skull.  When that happened, Sarah would die.

 

But what Sarah lacked in physical ability she made up for in exuberance and imagination.  It wasn't long before the two girls were leaving cookies for faeries under the pepper tree and pretending to be ponies prancing around the yard.  And, because the child was eight and still drenched in life, she refused to believe in the possibility of Sarah’s death, filing it away at the back of her mind in a shadowy corner. 

 

The two girls played almost every day all the way through September. Then one afternoon, in the midst of making mud cakes, Sarah’s face turned suddenly gray and her eyes refused to focus.  "“I have to go now,”" she whispered. "My head hurts.”

 

Sarah's mother was called, an ambulance summoned, and Sarah was whisked away to the hospital.  Two days later the child learned her friend had died and Sarah's family was moving away.

 

It was 30 years before I encountered another Sarah.  By then I had grown from that lanky child into a woman who not only wore shoes but willing ate almost everything BUT pizza.  One thing, however, had never changed – - the memory of my young friend’s face as she shifted her attention from life to death.  It happened in an instant, but was both unmistakable and irrevocable.

 

Unlike Sarah, Ernie'’s death was not imminent when I met him.  A 5’'8" ball of mocha brown energy, he was clearly enjoying life - one of his favorite ways to enter a room was by hugging everyone he met.  Ernie made his living counseling drug addicts and swam every day at the local Y.  Nevertheless, the look in Ernie’s intense brown eyes was uncomfortably familiar.  You could have his full and undivided attention and still know that part of him – some element of his being - was focused elsewhere.  I thought I knew where, but was afraid to ask. 

 

Fortunately, Ernie wasn't afraid and wasted little time on what he called the “niceties” of friendships.  "I ain’t got time to mess around," he announced during our second meeting.  "Either you want to get to know me you don’t, but let's cut the social chit chat."”  Over alarmingly strong coffee laced with honey he told me the story of how he contracted AIDS and revealed he was recovering from a second bout of pneumonia.  "They tell me I might live a couple more years,” he said with a shrug.  “We’ll see.  I ain’'t dead yet.”

 

It was from Ernie that I learned what it means to live your dying.  Knowing his body was failing, he was unabashedly honest about all bodily functions and had no qualms about asking you about yours.  "So how’s that PMS thing working out for you?" he once inquired while we were standing in line for the movies.  In a similar fashion he would discuss almost any topic with anyone – his favorites being reincarnation and abortion.

 

Ernie's honesty could be brutal.  He had absolutely no tolerance for drama and would flat out tell you to “"cut the crap”" if he thought you were being an idiot.  He also developed a fondness for Rumi, interjecting random and often disconcerting quotes into breaks in conversations.  “"You know about circumcision here.  It’s full castration there!”  he once barked aloud.   As the whole room fell silent and all eyes turned his way, he looked innocently around and said, “What?!  You don’t like Rumi?” 

 

Near the end of his life Ernie got very quiet, but he liked to hear poetry read aloud.   I used to sit with him for hours, picking and choosing poems from his favorite authors - – Rich, Pastan, Dickinson, Oliver, Frost, Keats, and yes Rumi. He would listen, eyes closed, a small tired smile on his face as I read slowly, letting the words sink in.  Here is one of his favorites - one that sums up what I think Ernie would have said about ”World AIDS Day and Karuna if he could be here.

 

It’’s a poem by Mary Oliver, entitled  “Long Afternoon at the Edge of Little Sister Pond.”

 

As for life,

I’m humbled,

I'm without words

sufficient to say

 

how it has been hard as flint,

and soft as a spring pond,

both of these

and over and over,

 

and long pale afternoons besides,

and so many mysteries

beautiful as eggs in a nest,

still unhatched

 

though warm and watched over

by something I have never seen ---

a tree angel, perhaps,

or a ghost of holiness.

 

Every day I walk out into the world

to be dazzled, then to be reflective.

It suffices, it all comfort –

along with human love,

 

dog love, water love, little serpent love,

sunburst love, or love for that smallest of birds

flying among the scarlet flowers.

There is hardly time to think about

 

stopping, and lying down at last

to the long afterlife, to the tenderness

yet to come, when

time will brim over the singular pond, and become forever,

 and we will pretend to melt away into the leaves.

As for death,

I can't wait to be the hummingbird,

Can you?


Copyright 2008 by Jenaia Morane (Jena Ball). All rights reserved.