Wednesday, October 29, 2008

I learned everything I know about God from my retarded sister

I walked half way across Ireland looking for God. Through driving rain, down forgotten trails, across centuries old pilgrim’s paths, I searched to fill an ache in my heart to discover something, anything about God.

At a pilgrims rest I encountered a dubiously curious holy man. “What are you doing here?” His poetic voice and pointed question pushed back my tired soul causing my eyes to come up for air.

“Uh, I’m on a pilgrimage.” When I said the words in his presence it sounded more like I was trying to steal a holy relic instead of discovering something about the mystical unseen.

“Humph,” he softly snorted. His crackling blue eyes pierced into my soul, “You wouldn’t be insultin’ God by lookin’, now would ya?”

Admittedly, I have spent the best part of my life searching for an intellectual encounter with the holy. At holy wells I prayed to see the water stir. Listening to great teachers, I yearned for “the” word that offered proof. Practicing spiritual disciplines in hopes for a revelation, a word, a punctuation mark, all have left me feeling unfulfilled.

Yet, in all my travels and personal efforts the only experience of a revealing encounter with the holy has been in the presence of my little sister. My sister is wise. She’s also strangely weird, a little nuts, often somewhat silly, and frankly, retarded. In PC-ese she’s special, challenged, mentally and physically handicapped. Technically she has Prader-Willi Syndrome (PWS).

My baby sister dances with God. For some reason unbeknown to me, I get to watch. Her name is Dinah. It reminds me she was named after a biblical character. Well, that’s not true. My mom named her after Dinah Shore. But it would have been really cool if she were named after the Dinah in the Bible. Maybe Dinah Shore was named after the biblical character?

Though my sister has this public relationship with God I doubt seriously if she thinks that much about God. But, when she does, when she communicates that encounter, it’s like a waltz. Her moments with God have nothing to do with her being Prader-Willi, it’s just the way she “lives, moves and has her being” through the world. In a sense her intimacy with God is as visible as her daily encounter with the rest of us.

Dinah has these little koans, cloudy windows into her hidden world. She’s like a druid priestess reciting rituals from another world. She often says, “I not not know.” When I ask her what she thinks about God she says, “I not not know.” I mean really, I could say the same thing. What do I know about God? Nothing. I could say, well the Bible says, or this guy I heard said, or my mom said, but what do I know? Nothing. What do I really honestly know, intellectually know about God? Nothing, nothing, as in “I not not know.” Of course she says that about a lot of other things too, but that’s her being genuinely honest. I wish I were that forthright. Especially when someone asks me questions assuming I know the magical answer. I think I’ll start telling them, “I not not know?”

As in, “Gil, why do shitty things happen?” Well, I not not know. That sounds better than some dreamt up theological bullshit. Doesn’t it?

PWS is attributed to the deformity of chromosome-15. It’s random. No one knows why it happens. It was identified in 1956, the year after my sister was born, by Andrea Prader and Heinrich Willi. Characteristically, Prader-Willi’s are hyperphagia among other things. Hyperphagia? Technically that means they eat too much. On the PWS website they sell refrigerate locks, that ought to tell you something. They sneak food. Steal food. Dig it out of trashcans. And then they hide it like an alcoholic stuffing bottles in little secret drawers everywhere in the house.

When we were preteens my sister would eat two or three loaves of bread in the middle of the night. At first my parents thought I was eating all that bread. I was a growing boy so I must have been downing the midnight snacks. One night my dad stumbled into the bathroom only to find my sister stuffing herself with an entire pie. As a result of their eating disorder, PWS people become obese as children. Many of them die in their twenty’s from related obesity issues. The average PWS dies at the age of 32. The oldest survivor was 64. Today my sister is 53.

PWS also have anger outbursts. Their outbursts are a rage that is wildly unrestrained. It’s like road rage on steroids. Typically the anger is directed at themselves. On occasion Dinah has ripped off her clothes and marched down the street screaming. Dinah has broken and destroyed more of her own beloved possessions than I can remember. Obviously, the outbursts add to the stress of the individual and their families. Dinah has taken several forms of psychotropic drugs, which help in some cases. She calls them her “weird pills.”

Her relationship with God isn’t a result of the drugs she takes. She’s always lived in that thin place with God between this world and the next. Dinah’s interchange with God apparently is real and fully functional.

We were on a walk in a mountainous area of Arizona. It was a summer day when the clouds were rolling in and rain was threatening. A dark clouded thunderstorm signaled a downpour was a few minutes off. The sound of thunder was crackling through the trees causing us to jump with every demonstrative bone rattling snap. In fear we were walking as fast as we could to get back to our cabin.

Out of breath and still a ways from the cabin, Dinah stopped. She glared up at the sky. “God,” she hollered out. “Dat enough.” She waited as if God would say, “Oops, I’m sorry about that,” and stop the storm. Instead another rattle of thunder roared through the trees. Dinah shrugged her shoulders and smirked as if to say, “Well, I said my peace that’s all I can do.”

Ok, I get it, or think I do. I can say whatever I want to God, just realizing God’s not Santa Claus and everything’s not going to work out just like I want it to. In fact God may not be in control of the thunder and lightening. Still, I can say my peace. That’s good enough. Then I can go on and keep walking. At least that’s what Dinah does.

Adding to Dinah’s genetic complications she had a temperature of 108 degrees during the first week of her life. Yes, you are right, my sister should have died a long, long time ago. The speech area of Dinah’s brain was affected most by the life threatening temperature. Consequently, she has about 25 words the average person can understand. She also has about another 25 or so words and signs that she uses to communicate with her family and closest friends.

When she and I were little guys there was Dairy Queen near our house. My parent’s drove us past the Dairy Queen each week on our way to and from church. My dad rarely stopped at the Dairy Queen. One day, out of the blue, on our way home Dinah started saying “I Cee,” and curling her index finger up and down. My parents have always worked hard to clue into Dinah’s attempt to communicate. It didn’t take too many times driving by the Dairy Queen with Dinah’s insistent “I Cee,” and wriggling finger for us to discover she was telling us she wanted ice cream. Her finger signal was mimicking the twist on the Dairy Queen sign on top of the building. I was really glad about her persistence because we got ice cream a lot more often after that breakthrough.

I can’t understand what God is trying to tell me. All the clues and the signs in the Bible and the cosmos leave me baffled. As with Dinah, though, I just can’t give up. There’s something about the mystery of it all that lures me into continually straining to hear and to see. I don’t get it very often, but the few times I do break code the intensity is revealing and worth the effort. Thanks to Dinah I got a lot of chocolate dipped cones. I wonder if God has soft-serve?

Instead of sweet ice cream sometimes life smells like shit. You know, really it does. When an event that smells like a four-day rotten egg invades our life, Dinah will hold her nose and say “keyqankey” Try it. Hold your nose and say, “key-qank-key.” You got it? No? Well, get a pot out of your cupboard. Get a wooden spoon and smack the bottom of that pot with the wooden spoon. That’s qank. Try it again. Hold your nose and say key-qank-key. I defy you to tell me there is a better description of something that smells really bad. I mean it sounds more realistic than saying, “boy that really stinks.”

When life goes south, stinks, really sucks do what Dinah does. Hold your nose and say, “God, keyqankey.” See if you don’t feel like God might be getting the picture a little better. When I pray, it’s all I can do to hope, at the depths of the pit I’m in, that God can smell the same foul order.

There is no excuse for boring and emotionless prayers. Dinah paints a picture for God. The nasal sound she utters lets me and I am pretty confident God, as well, know that the shit that just fell on my head is putrid and disgusting. When she speaks to God her feelings are all she has to speak with and they are undeniable.

Still, more often than not, Dinah is silent. When we go to dinner at her favorite restaurant we spend the evening like most siblings. We talk about our parents. She wants to know how my wife and kids are doing. I ask her about her friends at Art Works. I have learned to be comfortable with her silence. There are times she just wants to be quiet. She draws me into her silence. She has the ability to allow all thoughts to drift away like fragrant incense. She bundles the thoughts and sets them aside for a while. Her silence is restful. I wonder if that’s what it’s like sitting with God? Maybe, at least for me it is, sitting with Dinah is like sitting in the presence of God.

Besides not understanding God I have no idea what to say to God. I struggle trying to get the right words to communicate my feelings, emotions, desires, angst – well, Dinah has taught me to just go for it, do the best I can, just say what I can say and trust God will understand me.

It’s been our tradition at Thanksgiving that my mom asks me to say “a word” and then my dad prays for the blessing of the food. That’s been a standard ritual at our Thanksgiving gatherings for as long as I can remember.

A few years back my mom said she wanted to start a new tradition. Oh God, here we go, change. I like change about as much as the next guy, which means not at all, much less around the treasured holidays. I say a word, my dad says a prayer, we eat, and we watch football. Right? Not, not.

Mom tells us the girls are in charge. Well, I’m ok with that, sort of. My mom has it all lined out. First my daughter reads a poem. That’s good. Then my wife reads something from the Bible. That was ok. So I figure my mom is going to pray. Not, not.

My mom says that Dinah is going to pray. My parents have taken us to church from before memory, but, truthfully, I’ve never heard or seen or even thought about Dinah praying. She has an IQ of 45. Her vocabulary is limited. What is she going to say?

She bows her head. I’m watching her. I can’t bow my head and close my eyes. I have to drink this in, experience every moment. She bows her head as I imagine she’s seen us do before thousands of meals. Now what?

“God!” Here we go again. This time, though, I sensed God was there, present, at attention and listening with attentive ears. God had been summoned. God was paying attention like never before.

“God!” She repeated. There was a long silence. I could tell she was trying to gather up every ounce of intellectual and spiritual energy within her being and soul. Then it gushed forth like champagne from a freshly popped bottle. “I thank.”

Thankfulness? What was Dinah thankful for? Not only had she been dealt a bad hand. Someone had dealt her cards from the wrong deck. While we hope for a straight or a four-of-a-kind, she was playing poker with Old Maid cards. She would never experience many of the things that bring joy to this life. Yet, I heard her say, “I thank you God.” For what?

“God, I thank. Mom, Dad, Gia, Cafu, Nee, Esika…” What came after our names was a flood of emotion from every eye and heart in the room. We were the objects of her prayer and our lives were now the thankful ones. We had been blessed by Dinah’s beckoning of God into our midst. Fixated on my sister, I was pretty sure I had finally seen the face of God.

To me, that must be prayer. Dinah puts it out there. No begging or pleading for rescue from the inconveniences of existence. She didn’t want anything to be magically made better. Nothing to be fixed, or protected or made right, she only offered thanks in what appeared to be the cold absence of the reasons to be thankful.

I’m a very slow learner. It seems I have insulted God by looking for God. It took me two seminary degrees to realize that everything I really know and understand about God has come from my sister. Not from learned teachers, mystics or professors. I’ve read hundreds of books about God, what I’ve gained from them is miniscule in comparison to what I’ve gleaned from Dinah, who can’t read. I’ve been fortunate enough to hear some of this generation’s best thinkers give their finest oratory about the things of God. Every word I’ve read and heard spoken has been filtered through Dinah’s 50 words. The best I can truly say about God is, I not not know.


Ollie said...

First of all, what a great story. For myself, it made me reflect on my current situation and how I take it granted at times. I have a wonderful wife, and two wonderful children who are both turning 3 years old in February, and good health. I have a great house, neighborhood, career.....and I still find ways to complain about things that I really should be grateful for. The next time you feel like complaining, take a quick look around you and take in what you have, and I am sure when you think of this story, be thankful for everything you have.

hmshore said...

loved reading about your journey. I know it's a personal thing but I wonderful why you would ever call Dinah your "retarded" sister? It just sounds so demeaning and offensive.
As the mom of a child with special needs, hearing the word retarded used like that is very painful. I've only experienced the world of special needs for 12 years. You've been dealing with it your whole life. You have the right to call it whatever you want, I just wonder why.

Jackie said...

Wow, this was incredible.It really makes you feel like God is here with us and that he really does have a plan. I think it's so easy to get caught up in worrying about someone who got dealt a bad hand but maybe they're that way because they are supposed to be? They are really here to teach us and be amazing.

Roboseyo said...

Hi. I'm rob, a friend of Tamie's. She sent me here to read this. Thank you so much.