Love what’s left

I am moving up in line.

I remember when I was a young teen and we went to visit my maternal great-grandmother in a nursing home. She loved it there. She said she had friends galore and that some man had told her she had “nice legs.” I liked her waist-length hair: The bottom half was coal-black and the roots to shoulder were white, then gray.

She passed away and I didn’t really notice very much.

My maternal grandmother died of lung cancer and also had Alzheimer’s. I knew her much better than my great-grandmother, though I had not seen her more than once or twice a year throughout my life. I didn’t see her toward the end when her mind raced with confused thoughts. I prefer to think of the happier times – the Thanksgiving dinners and her laughter. She was the one I talked to about Rick, my future husband, being “the one”.

She passed away and it hurt.

I have been very close to my mother-in-law, Sylvia – yes, my mother-in-law and my mother are both named Sylvia -  since I met her two weeks before my wedding. She had three sons. Rick, the middle child, was the first to marry. He sprang the news to his parents in May and we were married in July. I was immediately welcomed, the first Anglo, into a family of Cuban heritage.

Last week I visited Sylvia in a nursing home where she’s been for the past month. She did really well for about ten years after the removal of a brain tumor that was supposed to have been terminal, and had led an active life. But the last three years have been rough, with one health problem after another. Most likely it is the gradual degradation of the brain following the radiation therapy. What bought ten years, is now grimly requiring its pound of flesh.

She sometimes says a coherent, clear sentence, but mostly doesn’t speak. She cries almost constantly and tries to say that she wants to die. She can’t walk or feed herself. It is hard to know what she understands, because so often she appears to be present in body only. I visited nearly every day last week when we were in Tampa.

I talked to her about her grandchildren, fun times, and then about heaven and Jesus. I prayed with her. I hugged her. I held her hand. I gave her sips of water. She was calmer and didn’t cry so much.

I understand something very clearly: I will love what is left of her. I will love what is left until there is nothing left. I will love her until there is nothing left of me – until it is my turn to move up in the line of life.

Aspergers and us

It wasn’t until around the year 2000, that I learned of the term “Aspergers” on a documentary program, but when I did, it explained so much. It was about that time that many people heard of the autistic spectrum, which encompasses an enormous range of behaviors, including Aspergers. But I am writing now of my family and our experience with my brother, Russell. He was never diagnosed. He took his own life in 1990, ten years before this was a familiar term. Recently, I heard that one in one hundred children are now diagnosed along this autistic spectrum. What causes this? How should those who have it be treated? The answers aren’t just an interesting topic, they could be life-saving.

There are a few characteristics that children with Aspergers seem to share, though there are always baffling exceptions. One is a history of traumatic birth – especially oxygen deprivation or acute illness at birth or at least during the first few months. My brother was completely blue with the umbilical cord wrapped twice around his neck. If this is in fact a cause, we may never know and are generally helpless in preventing such happenings.

The babies appear to physically develop normally, but it is what captures their attention and how they respond to human interaction in the later months which sets them apart from others. Their interest seems inordinately absorbed by certain objects. Repetition of certain actions is noticeable. They could literally do the same thing all day, like put-a-lid-on, take-a-lid-off. Take away what they like and you might be in trouble. This tends to develop into what seems like an obsession as they grow older. My brother was interested in Legos and dinosaurs. The fascinating thing is that they truly become experts with these topics of interest. When language develops, they will talk incessantly about what interests them. The way they talk has been dubbed by some as “the little professor”. It is obvious that they are highly intelligent, because they use extremely accurate words to describe what they are talking about, but their intonation may sound odd, flat, mechanical, or cartoon-character-like.

Trying to steer the conversation into a topic other than their main interest can be met with a blank look, or just yes and no answers. This hints at the main challenge of Aspergers – interpersonal relations and communication. Ask a child with Aspergers to draw a person, and many times it will have no face. Doctors have guessed that this is because the enormous amount of information that is generally communicated via facial expressions and body language just doesn’t register. Their faces tend not to be really expressive either. The hardest thing my brother had to do was smile for a camera. It was generally a grimace at best. Doctors ask children with Aspergers to look into a mirror and practice making different looks and learn to identify what each look means, because they don’t automatically get what information is given that way.

So, knowing what is going on in the mind and heart of a child with Aspergers can be enormously difficult. Their intelligence is generally above average, so they are acutely aware that they are different, but they will not be able to give voice to this. Frustrations have to be vented somehow. In my brother’s case, we just didn’t know how inadequate or separated from others he felt. He himself may not have understood. My only comfort is that I believe he now knows how much he was loved.

One other thing that is generally a characteristic is a more sensitive that normal gag reflex. I personally believe it is connected to the difficulty in accepting and processing what is strange or unfamiliar.

All information and diagnosis aside, basically you just have to love these children and accept them. I think being open about the topic with everyone is the best approach. Turn liabilities into assets and go with the interests and gifts the child has. Be aware that this is a whole family issue and even an extended family issue. In the end, this child could turn out to be your greatest joy.

To scan or grope? An airport dilemma.

Gee, it’s just so hard to decide….. Do I want the full body scan, or the body cavity search?

It was NOT like deciding between two flavors of ice cream. I stood contemplating the two possibilities as the clock was ticking for my flight to Newark, the first leg of my trip to Hamburg.

OK, scan it is. So, I start taking my jacket, socks, and shoes off. I fill up three plastic trays and hoist them onto the conveyor belt. Confidently, I walk through the first metal detector and immediately set it off.

Although it is completely irrational, I wonder if I somehow acquired a concealed weapon between here and the front door. I’m practically groping myself, trying to figure out what the problem is.

“Oh, it’s just my belt! Sorry!!” I apologize to the bored looking attendant, and quickly take that off. Surely, that was enough? No, I have to step to the side for a scaled-back pat-down. I then proceed to the full body scanner. There’s a little diagram to show you how to stand, spread-eagle. I push from my mind the thought of my scan going viral on the internet.

After dressing again, I finally make it to the gate and then we board a paper airplane, or an express jet as it were. I guess the little thing was going to pretend to be a plane today.

I settle in and prepare for two hours of boredom.

Surprisingly, we get the comedic flight attendant. He tells us how lucky we are to get same-day service to Newark today. The seat cushions could be used in the event of a water landing, and we could KEEP them as a souvenir! (I’m wondering how useful they’d be skidding over the tops of trees.) If the oxygen masks drop down, we are to put one on ourselves first and then pick the person we like best to give a mask to, if traveling with others. But first, we should be sure our seats were in the most uncomfortable position possible, before take off. He was so happy to be our “stewardess” today.

Nice. I was pretty sure – body scanner aside – it was going to be a good trip.

Back to the future

It was real. I was really there in Kirchsteinbek, a suburb of Hamburg. The day’s outing was over and I stepped off the bus at just the right place.

Twenty-five years earlier I got off the bus at this same stop, loaded down with school books. I was a fearful girl then, unsure of my life. What did I believe? Who was I? It was a year of getting to know myself, an American teenager in Germany. I worked incredibly hard at learning the language. I had an ear for it; I could converse almost flawlessly – until that is, I totally lost myself in an impossibly contorted sentence and forgot which verb to put at the end. And in my intense desire to appear to fit in, I would rather stay silent than risk the chance of making a grammatical mistake.

But an eighteen-year-old didn’t get off the bus this time. It was the next-to-last day of my visit back to the place of those memories, and a forty-three-year-old wife and mother stepped down to begin the walk “home”. I had talked for hours that day with my host brother, Henning. I hadn’t cared a bit if anyone heard my American accent, or if I’d gotten a word wrong, here and there. It had been a great day. Now, I was headed back to the Fitschen’s house. Hundreds of times I had walked that stretch before.

Everything was so familiar….. Suddenly, I was young again! I closed my eyes, my heart beat faster. I was that girl again. All the years ahead! A whole lifetime! But what was contained in those years? It came rushing upon me – scenes and faces, swirling around me. I felt the burning in my throat of suppressed sobs, for they were crying faces, screaming faces – mine, filled with grief.

When I had walked this way years before, I had a brother, I had a whole family, I had an unbroken body. Between this walk and the last one, they were gone. Years had stolen them.

Then, other faces took their place: Three babies, my husband.

There was no separating the pain and the joy. They were joined like an object in a picture lit brightly on one side, yet deeply shaded on the other. One object, one life: My life.

I can’t take away the bad, without doing away with the good. If it could be any other way, I would choose it.

So that is life. I can choose every day to live in the lit side, or in the shadow. It is only one small step from one to the other.

“Ich bin ein Hamburger”

Remember JFK’s famous line as he spoke in Berlin, “Ich bin ein Berliner”? Well, he endeared himself at once, because he said he was a pastry. Basically, I just said I was a hamburger – a very bad translation. But I can say I have left my heart – or at least a chunk of it – in the city of Hamburg, Germany.

I transferred to a different high school in eleventh grade, because it had a great art program. Since I had not yet earned my foreign language credits, I had to choose among Spanish – no, my brother was taking that,  French – no, too sissy, or German. Ok, German it is. My first day of class I was mesmerized by Dr. Love, the teacher. We saw a short film about skiing in Switzerland, and afterward the teacher came around introducing herself and asking us our names in German. I had never heard such a hideous language – TOTALLY COOL! I was hooked.

I labeled everything in my room at home, then expanded the labels to other objects in the house. My mom found one in her shoe one day. I checked out tapes from the library. I couldn’t wait for class each day. Perpetually with my hand up to answer questions, I grew impatient that other kids needed to participate also, even Butch, who came to class stoned almost every day.

Class was never dull. “Frau” Love was a chain-smoking, coffee-addicted, cock-eyed, diabetic. We never knew exactly whom she was calling on, because her eyes were looking at two different students. Occasionally, while sitting at her desk, her speech would slur, her eyes roll back, and her head would drop onto the desk. That was the cue for one of us to run to the cafeteria (next door) for some orange juice and another to race to the office. We succeeded every time in bringing her out of her diabetic coma.

That year, I tried out for a scholarship to study in Germany. I didn’t get it. It came down to me and the sister of my best friend. Her grade point average was a fraction higher, so she ended up getting it. I was crushed.

The next year, I tried again. So, in July of 1986, I found myself waving joyfully at my parents from the plane’s window as they both cried. I was on my way to Hamburg, to the Fitschen family, a name on the exchange student paperwork.

Little did I know how this would affect my life.

Great expectations

I am excited about my trip to Germany this coming week. The ticket was a gift from my former German host mother from long ago when I was eighteen and stupid. Ten days of no set agenda, no prior obligations, no parenting responsibilities. I have great expectations.

I’ve been thinking about expectations – why some are high, and others low. Unmet expectations are the stuff of disappointment . This, I feel, is the root of my “really, really bad day” last week.

Why do I expect certain things? Because of experience grounded in reality. I expect that I will rarely see the sun during a Tennessee winter, I will need a cup of coffee every morning, and I’ll have to wipe my old Boston Terrier’s butt when she comes in from outside.

I don’t get angry or disappointed with Tennessee, rant or rave when we inevitably run out of coffee, or fuss at “Bunny” for being a little on the incontinent side. In the reality of my life I have come to expect these happenings.

My view of people is, however, rooted in more than just experience. There is a deeper core of knowledge – an instinct of appropriateness of behavior – that is universal: A mother should love her baby and nurture it, a husband should protect his family, animals should be fed and cared for by their owners. News of domestic abuse of children or animals arouses indignation, horror, and pity. We could ask why we are bothered by this? Doesn’t our experience with real life tell us that it happens over and over, year after year? Isn’t it natural? Expected? Why hasn’t the fact that this is inevitable and constant in life eliminated my disappointment in this kind of behavior?

I personally believe that it is because what used to be good is now gone wrong. A world once created perfect, is now flawed. And everybody knows it. How else can you account for the fact that what we consider good behavior is often what goes against our natural instinct? Yet, this is what a hero does. A hero runs into the burning building to save the little child. A hero throws his body over a grenade and saves his platoon. A hero doesn’t eat, but gives her only food to her children. A hero works three jobs a keeps a roof over his family’s head. A hero faces another day of chemotherapy. A hero does what we know is truly right. We feel the rightness of it down in our very gut, though recognizing that it is a rightness that should be easy, but isn’t.

Why did no one seek to comfort me and my kids for that miserable hour, alone but in the middle of a busy front lobby last week? Because it was the natural thing, the easy thing to look away. Why did that disappoint me? Because in my heart, I know that people were created to be heroes every day, but we can’t do it any more. We’ve been letting other people down and ourselves since a terrible day long ago when two people, in a beautiful garden, decided that God didn’t really mean what He said. They could do better, they thought.

Just look at us, your children.

All we have left is a knowing, deep inside, that it is supposed to be better than this. We are supposed to be better than this.

My really, really bad day, the final chapter

I wish I held up better under pressure, but I collapse like the thin plot of a B movie.

I joined Ross in crying and my older two groaned in misery. Then the seven-year-old asked if I had keys, any keys at all. “Sure, here take them. They’re a set for the other car, but have at it”, I said as I handed them to him. Maybe by some miracle Chevy made a key exactly fitting my Ford. Who knew? That idea was shot down quickly.

Tick, tock, tick, tock….. My enemy, Time, was going forward leaving me behind.

I called my husband, who responded reassuringly and calmly as he always does in a crisis. We are polar opposites:  Little things send him over the edge, but he is my rock when I am a blubbering pile of goo. He would head home for the keys right away. The only problem was, that meant 1 1/2 hours of waiting. Nonetheless, I was going to need him if I was going to make it to work later at all.

Work….oh brother. I was still wearing yesterday’s clothes. Now with the stress I had two nicely pronounced sweat stains under my arms. Lovely. I sat on the floor near the entry, across from the front desk of this Christian fitness center with my head in my hands, thinking. I would try a lock smith. Barely able to speak, I rose and went over to ask for a phone book.

I finally found a locksmith to come in 20 minutes, but with all the time that had already passed, there was no way I could go home before work. The only feasible plan for the evening would be if Rick met me so I could pass off the kids. Now to call him to bring me a care package from home.

Rick is partially colorblind. I was going to have to stick it out in my present outfit, because there was absolutely no way I could describe clothes in enough detail that he could figure out what I was talking about. So I asked for a toothbrush, toothpaste, hairbrush, sanitary pads – yeah, that would start today – and comfortable shoes.

To make a long story short, or shorter, the kids made it home and I made it to work after a restaurant naturally messed up my order. By this point it was feeling like an out-of-body experience and I faced the next minor occurrences of the evening as if under an anesthetic.

When I finally got home at 11 pm and crashed onto the bed, I thought back over the day. I had survived. Yet something really bothered me:  When I had broken down with three kids in tow at that fitness center – that “Christian” fitness center of a major denomination – people just walked right past me crumpled up there on the floor. The three people at the front desk who gave me the phone book that I asked for with teary face and broken voice never once asked me what was wrong or if I needed anything. I guess the Bibles on the lobby tables were just for show – like coffee table books. Because of this experience, I am more resolved to be willing to enter into someone else’s pain and bad day, should I see it happen.

God help me to not be a “coffee table” Christian.

My really, really bad day, part deux

So how do you kill seven hours with a seven-year-old when you’re waiting for your older two to finish a writing conference ? First, I decided to drive over to work, get everything set up to make it easy to stroll in later that evening. That way, I would be able to rest a little longer at home before going in. I work at a store where I or one of five artists walk a class of adults through how to make a painting in the course of two hours. You bring your own wine or booze of choice and have a fun night out with the girls or guys. It’s a job custom-made for me.

It seemed as if the day would turn out profitable enough. The next order of business was to get this kid some clothes. Disposable ones would be perfect, but a thrift store or Kmart would do. Anything to get him out of the high-water, holey pants he had on.

So by two-thirty, we completely ran out of energy and things to do. I parked outside the large Christian Fitness Center where the conference was located, leaned the seat back, and closed my eyes. Ross lasted an entire fifteen minutes in the back seat before nearly losing his mind, so it was time to head in and find another way to kill the final forty-five minutes.

Yay! It was over and four weary souls headed toward the exit. I had just enough time to get home, grab something to eat, change clothes (which by the way were yesterday’s if you read the last blog), and rest a few minutes before the long night of work ahead of me. I just need to find my – WHERE ARE THEY? Oh, God, did I lock the keys in the car?

The short answer was, yes.

Mental calculation: If my husband left work immediately, drove home for the keys, turned around and came here, we’re looking at 1 1/2 hours minimum. It was at this point that the dominoes of misery began to tip and fall.

To be continued.

My really, really bad day, part 1

So many bad days start the day before and just bleed through the fabric into the next. I drove home late from work Thursday night, white-knuckled through pelting rain, to a very dark house: No electricity. The living room was decorated in “Early Crypt” with a dozen candles all around.

I wearily undressed, lay down, and couldn’t sleep. I finally drifted off about five minutes before every light in the house came on, like some kind of cruel light shock therapy. Well, at least I would be able to shower later. We would have to rush the next morning to get to an all-day writing conference for my two teens on the other side of town. Hopefully, the youngest could have a play date with his bud. I would get so much done!

That was the last happy thought for the next 24 hours.

The electricity pooped out after my shower. Ross, my seven-year-old, came crying hysterically to the bathroom door, “Ryan and Risa drank all the milk! Now I can’t have cereal!” The words were barely intelligible through the sobs. Since lowering my eating standards with the third child, I couldn’t blame him: He’s hardly known a hot breakfast and was completely disoriented.

“Don’t worry, I’ll stop at McDonald’s,” I said as I grabbed the only non-wrinkled clothes I could find – the ones I had worn to work the night before. I’ll change before I go in to work tonight. I’ll have time, I thought.

Since the drive-thru had an incalculable number of vehicles, we went inside and it was there that I got a good look at my kids. Ross was wearing pants that were about two inches too short with the knees completely ripped out. You can imagine the teens who weren’t able to shower before we left: Just plain greasy.

On the way to the conference, I find out that Ross will be spending the day with me. It seems that the stomach virus had reared its ugly head at his friend’s house. I was determined to not let that get in the way of my day, by golly. Surely that would be the only glitch…….

To be continued.

 

The fourth necessity of life

“Tell them, dear, that if eyes were made for seeing,

Then Beauty is its own excuse for being.”

- Ralph Waldo Emerson, “The Rhodora”, 1839

There are three absolute essentials for life: food, clothing, and shelter. I want to put forward another, after those have been met. Without this element, humans actually suffer.  I think there is death of the spirit when it is absent.

It is beauty, expressed as art.

Think about cultures and ages past. As soon as those three basic needs were met and there was any time whatsoever left, what did the people do? They made something beautiful. Sometimes they took a utilitarian object, like a pitcher or a bowl, and added the unnecessary. At least we could view it as insignificant, but perhaps the color or the design etched upon it was just as important as the usefulness of the object itself.

Come with me now to another place in time – the “Dark Ages”. Disease, hardship, and poverty made feudal life hard, but the church or cathedral was an escape from the drab and mundane. You couldn’t understand the Latin liturgy, but your soul could be fed by the beauty of the architecture and art through murals, stained glass, or sculpture. Thoughts would soar as high as the arches and windows.

Traveling now to the country or the wilderness, one could argue that viewing nature would be enough; that raw beauty would satisfy the soul. Archeology testifies against this theory. Man and woman felt the compulsion to make their own beauty, even if merely imperfectly translating a design from nature. Jewelry, ornamental furniture, musical instruments – not really needed for life, yet vital for life lived in a satisfying way. The tedious beading or embroidery of clothing and shoes added nothing to their functionality. More than just the doing – the planning and meditating about the design or use of color – the result was to be enjoyed. The purpose was simply pleasure in the seeing.

It is not just the need to create. It is the need to create something lovely. Something that has no purpose or meaning beyond the satisfaction of the need for beauty.Throughout all centuries and cultures this has been the case. It has only been in recent history that beauty has been abandoned by some groups in society, yet more in theory than in practice, because the need never went away.

It is most clearly revealed in the link between spirituality and art. When people abandoned God or their gods, they abandoned their guide, their meaning center. Men became god and realized that now the world didn’t make sense. Paintings broke apart. First in little pieces – Impressionism – then in chunks so large that what had once been recognizable now must be interpreted, as in Cubism and Postmodern art. Eventually only line and color remained. Art became a Latin liturgy.

So what feeds the spirit now? It’s all about “decorating”. The human need for beauty must be satisfied somehow. So, we decorate our homes, dress our dogs, do our nails, color our hair. Somehow this prefabricated, fast-food beauty doesn’t fully satisfy. Vitamin-infused beauty is the result of labor, effort, and skill.  Some of it is learned, the rest just a gift that must be nurtured. We are artfully malnutritioned as a culture and our spirits are dying.

What legacy of beauty will you leave behind?