Saturday, April 30, 2016

Voices from the Edge: Change the World

Image result for dollar storeWe have just finished Sunday dinner--a succulent roast beef with rich gravy--when Allen pushes back his chair and announces, "I need to go to the Dollar Store."

"Okay," I say. I have given up asking my autistic adult son why he needs to do things, but he volunteers the information anyway.

"What I get is going to change the world."

Wow. Pretty tall order for something that can be bought at the Dollar Store. "See you when you get back," I say as I start to stack the dinner dishes. My mind begins to wonder, what can be had for only a dollar, but has the potential to change the world. Washing dishes, up to my elbows in soapsuds, I ponder what was going on in my son's mind. Living on the upper edge of Autism Spectrum Disorder, Allen functions well at his job and is responsible about his car and his cat. But his brain works differently than mine, and while I always attempt to find meaning in what he says and does, sometimes he is downright quirky.

Something that will change the world.

I recall small things that have made a big difference. Zippers. Velcro. Chocolate chip cookies. Those little plastic things--aglets--on the ends of shoe laces.

Dishes done, I sit down with a cup of tea and a book. A few minutes later, Allen bursts in the door, a bag in one hang. He stands in front of me with a grin and reaches into the bag. I am going to be included in changing the world. He pulls out the item and hands it to me.

Toothpicks. A round plastic container of toothpicks.

The world is changed.

Allen bounds upstairs to work on his new computer game and I stare at the plastic container. Toothpicks? How will toothpicks change the world? I know there is some connection in Allen's brain, something that makes sense to him.

About an hour later, Allen appears in the living room, dressed in his pajamas. He scoops up his cat and settles onto the love seat.

"About the toothpicks," I begin.

He gives me a bright smile. "They're for the WHOLE family," he says, obviously pleased with himself.

"Hmm," I say. "Thanks. But I don't really understand how toothpicks will change the world."

He spares me the duh, Mom, look. "Didn't you ever get something stuck in your teeth?" he asks.

"Well, sure," I say. "Happens to everyone."

"And isn't it annoying?"

"Yeah. Really annoying."

"Just think, Mom," he patiently explains, "if all the little things that annoy people went away. Then people wouldn't feel frustrated and get in fights. We could all get along and concentrate on other things."

Allen's brain may work differently, I think, but there is nothing wrong with it. This is deep.

"So, toothpicks?" I ask.

He shrugs. "Gotta start somewhere."

And that is how Allen will change the world.

One toothpick at a time.

Sunday, April 17, 2016

Tender Eyes

Leah's eyes were tender, but Rachel was shapely and beautiful.
Genesis 29:17

"You have beautiful eyes," he said, and here Dr. Scheie paused dramatically--or at least he should have paused dramatically, because what he was about to say would have a major impact on my life--"but you have a rare and serious disease. It's called keratoconus and it deforms and destroys the corneas. I'm afraid that you have it in both eyes and while we can deter the progress, we can't cure it."

It is hard to believe that it has been forty years since I heard those words, forty years since my mother and I drove up to Penn on a wintry January day. I was nineteen at the time, a freshman at Millersville State College headed towards a teaching degree in elementary education. But headaches and blurred vision, episodes of dizziness and walking into walls had convinced my parents that something more than just a change of glasses was needed. No one expected that the appointment would reveal a disease that would ultimately become a major player in the story of my life. But our lives often have unexpected plot twists. Take, for example, Leah, in love with Jacob, who was in love with the younger daughter, Rachel. Talk about a love triangle!

Many interpretations of the Bible claim that Leah's eyes were not one of her best features, that she was cross-eyed or near-sighted or--it's possible--suffered from keratoconus. But with my own eyes both my best and my worst feature, I've always identified with poor Leah, who spent years in the shadow of her lovelier sister, Rachel. According to the Hebrew  4 Christians website, "weak eyes" is not, as some Biblical scholars have stated, a negative comment. Leah, about to be forced into marriage with much, much older Esau, wept until her eyes hurt. She prayed that she might become the mother of the righteous, and God saw her tears.

I, too, have tender eyes. Many have called them beautiful. The first words my husband ever said to me were, "You have the most beautiful eyes I have ever seen." So, of course, I married him. But having tender eyes--eyes that see through misshaped corneas--is not easy. While more is known about KC--as it is commonly called--now than 40 years ago, it is still a pretty rare disease, with fewer than 200,000 cases reported per year. Common symptoms--and yes, I have them all--include ghost images, multiple images, glare, halos, extreme sensitivity to light, and starbursts. I also have the tell-tale gold riings--Fliesher's Rings--that often come with keratoconus. While not yet proven, the disease is thought to progress with pregnancy, but I wouldn't trade Dennis, Bonnie, or Allen for 20/20 vision anyway.  15 to 20% of KC sufferers will require a transplant at some point in time; I've had two.

Image result for keratoconusLeah, my tender-eyed friend, was honored by God. It was through her son Judah that both King David--and ultimately Jesus- descended, and through her son Levi that both Moses and Aaron came. The word translated as weak in the Talmud is the Hebrew word rakkot, the plural form of rak. According to the Talmud, rak--tender--connotates royalty. Leah's eyes, whatever their condition, placed her as the matriarch of a royal line.

Years ago, when I was 19, I had no idea just how big a part KC would play in my life. I did not know that I would someday--as I have now--reach a point where certain things are no longer possible for me because of my tender eyes. I do remember this, though. I remember praying on the drive home from Penn: "Lord, I want to serve you. If I will do that better as a blind person, than so be it."

I am not blind. While my vision is distorted and severe eyestrain has become the plague of my life, I still want to serve God in whatever way He deems fit. I may not become the matriarch of a royal line, but I know that I am a child of the King.

Tender eyes and all.