Until I Say Good-Bye (21 page)

Funeral

H
ave you ever thought of your funeral? Admit it!

Everybody gets one, but only one. What else in life can you say that about?

I thought about my funeral long before I got sick. My, oh my, there must be a dramatic train of black limousines. I'm a sucker for limousines. Fine canapes. Champagne. Tears.

And photos. Not just tacked up on posterboard, but professionally assembled. Set to music. A multimedia presentation.

After every funeral my mother attends, she comments on the number of people in the crowd. “All but the two back pews were filled. Must have been a thousand people there,” she would gush. As if that were the barometer of a person's worthiness.

So there must be people at my funeral.  Lots of people. My parents have scads of friends, my sister as well. Yes, we probably could raise a crowd.

After I got sick, though, I started caring less. Limousines? Where would they go? Who would even ride in them?

Funerals are for the living, I kept telling myself. And I believe the absolute worst thing that can happen to a human being is to have a child die. So my funeral should be at my parents' church, where hundreds of their friends will surround them with love.

But I am not a Baptist.

I have beliefs. That God exists in each of us.

But religion divides us. That science makes planes, but religion flies them into skyscrapers.

One of my favorite books about belief is
The Tao of Pooh
by Benjamin Hoff. It explains the tenets of Taoism through the simple view of Winnie the Pooh. I quote Hoff's book:

“Rabbit's clever,” said Pooh thoughtfully.

“Yes,” said Piglet, “Rabbit's clever.”

“And he has Brain.”

“Yes,” said Piglet, “Rabbit has Brain.”

There was a long silence.

“I suppose,” said Pooh, “that that's why he never understands anything.”

Hoff uses Pooh, a calm bear who practices minimal effort, to explain how Taoists achieve peace and power of the mind, in part by not resisting the natural order of the universe.

“That's not a religion!” the Baptists will say.

Which is precisely why I like it.

So here I was, a heathen in the Baptists' eyes. A dying heathen, who sought a funeral in their church.

And not just any funeral, but one that reflected my ecumenical respect for all. I wanted a rabbi, an imam, a Buddhist monk, and a Catholic priest. I wanted each to explain their belief in what happens after death.

I invited First Baptist Church's pastor, Jimmy Scroggins, to my home to request just that: a fully open service. A request almost as outrageous as asking him to host a keg party in his sanctuary.

I told Dad about it. He was appalled, but said nary a word to me, just communicated to Pastor Scroggins that he disagreed with my request. That's one of the first things Pastor Scroggins told me when he arrived at my house: “Your dad doesn't think it's a good idea.”

Respectfully, I made my request: “Could a rabbi, imam, monk, and priest be celebrants beside you at my funeral?”

Pastor Scroggins was a charismatic young preacher, a dear holy man devoted to serving the Lord and sharing the word of Jesus Christ. A man of faith. He looked me in the eye and said: “Susan, you can have the Rainbow Coalition stand up and say things about you personally, but not about their beliefs.”

He explained that he would not ask to preach at a mosque out of deference to the imam. “It's disrespectful.”

He was polite, concerned—and resolute.

I understood. No bitterness. His church, his rules.

I thanked him for coming.

If Dad disagreed anyway, then it should not be. I was trying, trying to inject “me-me-me” all over the funeral, forgetting that funerals are for the living. That the most comforting message my parents could hear on what might well be the worst day of their lives was the one they have heard for decades, the one they believe.

Not the one I do.

Don't overthink things, I tell myself. Be the stuffed bear.

Keep the funeral simple. A few words. A picture-and-music slide show of my life I am preparing with Gwen Berry, a multimedia journalist colleague who offered to help me. A few friends. Just a few. My family. That will be easiest on John. He doesn't like being the center of attention.

He will arrive late, anyway. Smile. My John.

He will have spent the morning wrestling three children into nice clothes. Let them wear shorts, John! Let them enjoy what they can. Whatever is best for the children—my children—that's what I ask of you.

Till then, I will live in the Taoist way: peaceful, not strident about wants or beliefs. I will live in the now.

As Lao Tzu wrote:

Be content with what you have; rejoice in the way things are.

When you realize there is nothing lacking, the whole world belongs to you.

I turn away from my iPhone and look at my backyard. Still here. Right now. I text to Aubrey: “Can you come?”

I don't tell him what I want to do: give him a hug. Or more precisely, since I can't hug him very well, I want him to hug me.

Be content. Rejoice. The world belongs to you.

Say those words if you wish, Pastor Scroggins. Or don't. It doesn't matter. Do what you feel is right.

Then donate my body to science.

Science—that I believe in.

Cyprus

June–July

Fearless

W
e arrived in Cyprus in late June in hundred-degree heat. Hot, yes, but comfortable for my Mediterranean soul.

The first visit, I had been searching. Trying to find a medical explanation, but also a history. Trying to find connections.

This journey was more leisurely. I knew who I was, both my past and my future. This time, I just wanted to spend time with my relatives. Live the culture. Soak in the colors I remembered well: white buildings, green palms and fruit trees, the splays of bougainvillea, fuchsia, red, white, and orange.

This time I brought John, in addition to Nancy. I wanted him to value this land and these people as much as I did, so that the connection would not die with me.

I also brought Ellen, my birth mother. She had asked to come, to explain her actions. Volunteered for what could be quite an inquisition from Panos's relatives.

She had no emotional attachment to Panos. She had not spoken to him since discovering she was pregnant. But she wanted, I realized, to close her own psychological loop. To address the decision she made in not telling him of me.

I had doubted her once, thinking cowardice kept her—and by extension Panos—from me. Now I saw that she had struggled, and that she was strong.

Fearless!

We went from the airport to the Hilton on the Greek side of Nicosia, a luxury hotel with velvet-upholstered couches, verandas, and a large pool.

There were gifts in our rooms from Panos's family. An antique copy of the book
Peter Pan
—Soulla loves antiques. Jewelry. Chocolates. A book about Cyprus. Phaedra, Soulla's nine-year-old granddaughter, had drawn butterflies on a beautiful card and written “Welcome.”

I instantly felt at home.

And pampered. Soulla's son-in-law, Avraam the Operator (who brought Red Bull to Cyprus!), knew the manager of the Hilton.
Voilà
, I had a wheelchair-accessible room on the VIP floor.

“Nice, huh?” John said.

“
Neh
,” I replied.

In Greek,
neh
means “yes.” So of course I immediately started using it on my poor husband.

“You have to use the bathroom?” he'd ask.

“Neh.”

“No?”

“Neh!”

“Stop it!”

Another Greek word I loved was the one for okay:
endaxi
. Or
dox
, for short.

“Dox,” I'd reply to John, and he'd roll his eyes.

Then one of my fellow Americans would crack the old “It's all Greek to me” joke. That was when I'd roll my eyes.

My first trip to Cyprus, a mere two years before, I had trundled all over Nicosia. Up the elevator to Soulla's terrace. Up the stairs to centenarian Xenon's apartment. Out to George's house. Around the historic shopping district.

At one point, George had taken us to a beach called Fig Tree Bay. The water was cold, but I didn't want to miss the chance to swim in the Mediterranean. So Nancy (reluctantly, she's a wimp about cold water) and I swam out a couple hundred yards to a floating platform. I pulled myself onto it without help. Lay there for a while, soaking in the colors, sunning, not wanting to leave.

This time, I was marooned at the Hilton. Too weak to walk, too confined in my body to swim on my own.

No bother. The Hilton had a canopied terrace with arches and tables overlooking the pool. A beautiful Mediterranean spot. My spot. Where my relatives could come to me.

And come they did, many nights of the week we were in Cyprus. Glorious gatherings with no expectations or timelines, just jumbles of drinks and food and attempts to seat our party of ten.

This time, it was the children, Phaedra and Anastasia, who charmed me.

I am hyperconscious now that I may scare young children. My wheelchair is all black with large wheels, and I sit, unable to rise or play, slurring and gnarled. I once saw a child turn and bury his face in his mother's legs when he saw me. At that age, I would have been scared too.

But not Phaedra and Anastasia. For them, my chair was a toy. When it was empty, they would hop in and push each other around. John did wheelies with them. Anastasia curled up on his lap one night as we ate dinner.

My old family and new family. Together.

All except Panos. I would have to summon his spirit once again. Would have to journey to him, as he could no longer come to me.

We visited his grave at high noon on an intensely sunny day.

“Odd that we are all wearing black,” Ellen said on the way over.

“I meant to,” I said. “For the cemetery.”

“I didn't think of that. That's not something we do in California,” she said.

We stopped to buy flowers. Nancy chose purple flowers called “Immortals,” so named because they never wilt, dead or alive.

Panos was buried in his family plot, in a cemetery in the middle of Nicosia—a cemetery so old and crowded that to make room for the newly deceased, they dig up old coffins and bag the bones, then rebury the bag.

An ancient place. A silent place, with cypress trees rising round the living and the dead.

On my first visit, I had stood alone at the graveside. Panos Kelalis. 1932–2002. I could read only his name, written in the Greek alphabet. It felt like our own secret language.

“I am proud to be a part of you,” I had telegraphed to him. “I am sad not to have met you.”

This time, I came with my husband, relatives, and friend. Nancy placed the Immortals at the grave. I rose from my wheelchair, not wanting the encumbrance. Showing respect and strength. The white marble slab reflected hot light so bright I squinted behind sunglasses.

Our guide Alina—Soulla's daughter, who came from London for our visit—asked the cemetery's Greek Orthodox priest to say a blessing over the grave.

The priest stood facing me in full sun. He had very white hair and a very red, sweating face. He wore a floor-length blue robe with a textile vestment draped around his neck, faded by the sun.

My God, he must be sweltering, I thought.

The priest held an incense burner, a long chain with bells, and an ornate orb on the end containing cinders. He chanted a monotone prayer in Greek. I understood two words and, by his flat affect, that he had said this prayer a thousand times before.

I heard “Panos” and “Theos”—God.

I felt faint in the heat and miasma of death.

I asked to leave, for standing at the grave of my birth father—in cool weather or hot—made me feel no closer to him.

I saw more of him in the ocean painting he loved, in the worry beads he thumbed, in the photos of him, especially as a young adult when he looked like me.

I felt closer to him in the land he considered his home, not the marble tomb where he now lay.

Like all of us, Panos lived in the people he left behind, including me and my children, descendants he never knew.

That night, we convoyed in cars to my friends George and Yioula's beautiful home in the countryside. Their son, Stelios, had grown a foot since I last saw him, more into the handsome man he was bound to be.

Oh! I hope Marina likes him one day, I thought.

George and Yioula graciously hosted a dinner for the fifteen of us, even though they were leaving on their own vacation the next day.

We sat outside overlooking the surrounding fields. I explained to George I could no longer drink like I used to. My language is so slurred, one drink and I am unintelligible. “But when the talking is over, bring it on!”

Some Cypriot journalists came, friends of George, who is a documentary filmmaker and operator himself. As a former journalist, I felt sorry for them, parachuted into the middle of the saga, struggling to understand.

“Let them ask the questions!” I said, shushing the group, which was overloading them with details.

Nancy had brought gifts and handed them out after dinner. Seven-year-old Anastasia, the smallest child, piped up: “Where is mine?”

I love kids!

I had brought one gift: Panos's Bible. I wanted to present the Bible to Soulla that eve, while I was still strong. I knew I could not speak the words without crying, so I wrote them down on my iPhone and asked Nancy to read. As Nancy took my phone, I began to cry, sniveling so loudly I bowed my head to hide my face. Nancy read:

Dear Soulla,

I will write these words to you, as my voice is weak and my will not to cry much weaker.

At the same time I learned who my birth father, Panos Kelalis, was, I learned he was dead.

Then I parachuted into your life, a true foreigner with an unbelievable story, asking all about him, prying really.

I feared that no one would believe or like me, suspect me of being a gold digger, reject me.

Rather, you responded kindly and shared so much.

Naturally, we talked much of his ex-wife, Barbara, on our last visit. And you mentioned you were disappointed when she came for Panos's funeral and did not bring the family Bible as you asked . . .

“If you meet her, take it!” you said, perhaps in jest, perhaps not.

Barbara remained a curious figure in my mind, not so much for her egregious actions but rather to see who this American princess was who hijacked my father's heart.

I wanted to learn from her something about how he loved.

Nancy read the whole story of Pat's help and Barbara's response. She read:

As I sat on her living room sofa one day, I squinted in the bright sunlight.

“You are squinting just like Panos,” she said.

So, in the end, Barbara believed in me. Which was not nearly as important to me as having the Bible.

Which I now give to you.

Your goodness has engendered so much more goodness, peace, and strength in my life. Your sharing of Panos has helped give me absolute peace of mind that I do not have a genetic form of ALS, that I don't have to worry my children will suffer it one day.

I love the stories of how fearless Panos was. They help me feel stronger today. . . .

Soulla, you have filled out in my mind who he was, made me proud to be part of him, made me sad not to know him. Today, I have stories of his personality, photos, personal objects of his, thanks to you and Ellen.

I have an image of him I admire much. I hope, hope to meet him on the other side of life.

I am not fearful of death. I am fearless.

Thank you. Efcharisto.

Soulla sat in stunned silence.

Nadia, the spitfire, asked to see the Bible. “No, I don't think that's the one,” she chirped right away.

Avraam inspected it and discovered something Pat, Nancy, and I had missed. A highlighted passage, in fluorescent yellow, about how a wife is to do the husband's bidding.

Ack! It's Barbara's Bible!

“Well, it's the thought that counts!” I said to the group.

We all had a good laugh. And in that moment, the embarrassment turned into another memory, another story to share under the Chickee hut like wine.

Stelios, George's son, invited us to a piano recital inside. He played “The Star-Spangled Banner.” Anastasia stood by, conducting. I about had Marina married off to Stelios by the end of it. Roll your eyes, Marina, but 'tis true.

George, Nancy, and I had been students together in the University of Florida's graduate journalism program. Nancy and I had posed as actors in some short films George had to make in his TV production course.

George had found the films and played them for us.  There was Nancy twenty years younger, the only difference her hair three times bushier then.

And there was me. So very, very different. My hair blond and bushy, my face plump, not sunken as it is now. And my hands.

The video was of me making a Greek salad. The camera zoomed in on my hands, holding the tomato, cucumber, and onion.

My fingers nimble and thin, the natural nails long and smooth.

Fingers now curling as the muscles weaken. Nails untamed and often dirty, as I am unable to manicure them myself.

What do I do?

What do I do in such bright-line moments, where my handicap whomps me over the head?

Dwell in what there remains to be grateful for.

My hands are snarled, but I can still touch. I cannot hold, but I can feel. I have my connection to the world, which ALS will never take away.

I had one more journey to take in Cyprus. A journey home. A trip full of sights. Sounds. Tastes. Touch. A journey to delight my senses.

Senses forever mine.