Voices from the Edge: Comfort Zones

It is Thursday and I need to be at a class in half an hour, but Ron has taken the car out to the drugstore and is not yet back. I tap my foot, both in impatience and indecision. Allen is home from work; I could ask him to drive me.  As his Thursday schedule stipulates, he has fixed supper for the family tonight--even now the sliced turkey and gravy with their watery mashed potatoes sits congealing in a casserole dish on the kitchen table--and gone upstairs to rest. Interfering with Allen's schedule or asking him to change it in any way is taking a big risk. I never quite know how my autistic adult son will react. In the year since his diagnosis, I've learned a lot about living on the edge of the autism spectrum. With some help and support from Occupational Vocational Rehabilitation, he's learned to hold down a full time job and interact in limited social situations. But it all takes a lot of energy, and early evening naps are now an ingrained habit.

The clock ticks away and I decide to risk it. One tap on his bedroom door, one softly-voiced query. So I make the move, and he--astoundingly--answers. "What?"

"Dad's not home yet," I explain. "And I need to be to Kingswood in half an hour. Can I borrow your car? Or can you take me?"

There is a long, long pause. I see the second hand on my watch spin around the circumference twice, but I do not tap again. One does not rush Allen, who needs time to process and time to answer.

"Just a minute," he says. It is good news. He has not ignored me nor gone back to sleep. True to his word, he appears with his sneakers in hand, dressed in his flannel pajamas with a sweatshirt pulled over his head. "I'll take you."

"Great!" I say and gather my two book bags together, giving him no chance to change his mind. We make it down the steps in tandem. Allen bargains me into buying him a Monster drink and a pretzel at WaWa. "Sure," I say and we step out into the May evening.

Things are going well. So well that I venture to ask another question. I begin hesitantly. "I know it's not on your schedule..."

He shakes his head. "Then I can't do it." End of discussion.

I try again. "Just listen, please. I know it's not on your schedule, I understand that, but could you possibly do the dishes? I know you cooked and all, but I won't be home until 8:30 and I don't want to face the dishes then."

"I wish I could," he says, "but it's not on my schedule. So, no, I can't." I can picture the schedule on the refrigerator, the elaborate spreadsheet that helps my son function in a world he finds alien.

"Just this once," I cajole. "I do things that aren't on my schedule all the time. Can't you--just this once--be flexible?"

Even as I say it, I know it is wrong of me to expect a positive response. Allen does not stick to his schedule with engineering precision because he wants to; it is because he needs the order it provides to him. As Therese Jolliffe--a psychologist with autism--observed, the routines of autistics introduce order into the confusing reality of life. The carefully structured weekly map keeps unexpected changes, which have the potential to throw Allen into a meltdown, at bay.

And I have already asked Allen to step outside of the safe schedule today. He is in the car, in his pajamas, ready to drive me to the class I need to teach. He is already outside his comfort zone. I am, I realize, pushing my luck.

But I push a little further anyway. "I understand the need for your schedule, " I tell him. "I really do. But sometimes I need a little more help than your schedule permits. Just once in a while. That's all. I do things that aren't on my schedule all the time."

My son shakes his head a bit sadly. "I wish I could," he says. "But I'm not like you. We just have to deal with it. I do the best I can, Mom. Honest."

"I know. Really, I do know that," and my mother's heart aches for this child who lives his life in a world foreign to him. "I like you the way you are. Schedule and all. Thanks for taking me. I know you had to change your routine for me."

He grins at me, his blue eyes sparkling. "You are I are real different, Mom. But I like you the way you are, too. And I wish--I really do--that I could be more like you."

I reach for my seat belt to fasten it in place, distracted by the two hours of class time ahead of me and the congealing casserole the cats are probably feasting on as we speak. "And how am I?" I ask, pretty sure that controlling and demanding is somewhere on the list.

"Amazing," he says as he puts the key into the ignition. "You are just amazing. And I..." he turns the key and the engine purrs to life," am lucky to have you."

Playing by Memory

Monopoly at the dining room table was, for several years while the kids still lived at home, an almost weekly event. Various teens and twenty-somethings would gather around, soda and popcorn at hand, and battle for hours over the right to rule Monopoly world. We even had a small trophy awarded to the winner each week.

Truth is, and I know it's cliche, but I know the Monopoly board like the back of  my hand. My brother and I found an old set of my dad's in our grandmother's attic, and with no rule book to follow, we taught ourselves the game. We whiled away many summer days, while Mom was working, in the basement loaning each other money so the game would last until Labor Day. I know just where Luxury Tax is on the board and that the green spaces--North Carolina, Pacific, and Pennsylvania--are the most expensive to develop and seldom result in a winner, while the railroads--B&O, Shortline, Pennsylvania, and Reading--can provide a lot of income.

We hadn't played Monopoly in a while. All but one of the kids had moved on with their own lives, but last Saturday Allen dusted off the board and set it up hopefully in the kitchen. We actually own six versions of Monopoly--my favorite being Star Wars--but this one was the America-opoly. This version had no dog as a token, so I took the hat and began my quest around the board.

And found that, even though I knew the game and the board, I couldn't read a thing. The dots on the dice blended into one blob of something, and while the spaces were familiar, I couldn't read the price or the names. It was a bit disconcerting to realize that my continuing battle with keratoconus had cost me the ability to see the board.


But it had not erased my memory. Memory is a powerful thing. 2 Corinthians 2:9 tells us that God's "grace is sufficient, my power made more perfect in weakness." My eyes are weak--tender, even--but that does not mean that God has finished with me. The Apostle Paul, author of this Book, wrote that he, too, had a thorn in the flesh that kept him from becoming boastful. While it is not known just what this infirmity was, many scholars feel that it may have been a visual ailment, a notion borne out by Paul's use of scribes to write his work.

I may no longer see the Monopoly board as clearly as I once did, but I remember the hours of enjoyment playing the game. I know the game well enough that I can still play, with or without full sight. Like Paul, I have often of late mistaken what I have seen. While I have never called a high priest a "white-washed wall' (Acts 23-3-5), I have mistaken a dried leaf brought in by the dog as a mouse and just last week thought a mailbox was a man waiting for the bus. When you think about it, it can be downright funny.

It would be easy, I guess, to become bitter. As a teacher and a writer, I depend upon my vision. But I every day, I try not to let a bitter root grow (Hebrews 12:15). I know God has his plans.

As long as I can remember, I will continue to play the game.

Voices from the Edge: Change the World

We 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.

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.

Leah, 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.

Share Your Scars

 Originally published in the Word Girls Newsletter, February 2016          

In the years following my husband’s horrific car accident, summers took on a familiar pattern. With my teaching load halved, I had more time to write. The pile of journals grew as Ron battled physical and emotional ailments and I found solace in the healing act of writing. Somewhere along the way—probably sitting in another emergency room —I’d allowed my daughter to read some of the entries. She looked at me with tears and said, “Mom, it’s a story you need to write.”

            I tried to rise to the challenge. I plotted out story lines using Freytag’s pyramid, and imagined a perfect heroine to live our own version of a Greek tragedy. I wrote draft after draft, crumbling them all into balls and bouncing them to the cat.

            But try as I might, the events of the last 14 years refused to be molded into anyone’s pyramid.  Because, of course, they were not fiction. It was real, it was raw, it was my life. I went back to the research of James Pennebaker, professor at the University of Texas, and realized that writing about my own scars was only half of the healing process. The other half—the half that could help others to heal as well—lay in opening the wounds. I thought of Alice Sebold, who needed to write the true story of her own brutal rape in Lucky before she could create Lovely Bones. I spoke with Ron’s therapist who assured me that the universality of pain could help others through my writing. Still, I dragged my feet.

            It struck me very suddenly, sitting on my back deck one early July morning. God was calling me to write. After Ron’s accident, Dr. Huffman had occasionally asked me to speak with the wife or husband of another accident victim, to let them know that life would go on. Who better, she said, than one who had survived. So I plunged in, pulling out whole sections from my journal and posting them on my blog.

            People responded. They wanted to hear more. I plunged in even further. If only one person could be helped, I told myself, if just one other woman could see that a changed life was still a valuable life, it would be worth the work. I spent a year culling through the journals, adding poems and Bible verses. I kept blogging. And in June of 2015, Crazy: A Diary was born.

            Writing it had been hard, harder than writing my doctoral dissertation. It had required me to open up old wounds and bleed onto pages. I had published it with little fanfare and it reached a limited audience.

            But it reached who it needed to reach. One night, about six months after Crazy was out, an unknown reader from another part of the country e-mailed me. This is what she said:

            “Your book saved my life. I was about to give up, but I think now that I can go on. Thank you.”

            No. Thank God. .