Until I Say Good-Bye (7 page)

A
few days later, I put copies of the letters between Ellen and me in a manila folder and took them to my parents' house. To be frank, I don't remember what was said. Kinda like when I interviewed famous people. I turned on the recorder and talked on autopilot, listening from a cloud. But that day, I had no recorder.

I do remember the first of Dad's very few questions: “Where does she live?”

“California.”

“Good. Far away,” he said. “You don't want her just droppin' in.”

I remember my mother bringing out the little pink baby dress she brought me home in. And the little yellow one she brought Stephanie home in.

No, I don't remember the words. But I remember the feeling. Isn't that what really matters? How we are left feeling?

I felt sorry for them. Mom's little pink dress. Dad's paralyzed emotion.

I felt guilty. Because I knew in my heart I was going to do what I wanted, and they knew it too. It had always been that way. No guilt nor risk nor fear had ever dissuaded me from doing what I wanted.

It had always been Me, the child they could not control. And Them, the oft-appalled parents.

That meeting slowed me down, though, made me idle a while. I did not act. I went weeks and weeks without writing Ellen back.

Mom asked now and then if I had had further contact with Ellen.

“No.”

Then Mom said something that impressed me, and I am one tough cookie to impress. Mom—the woman I was convinced would cower and focus on herself—said: “Don't leave her hanging like that, Susan. She is hurting. She is a mom.”

Still, I waited.

I have often in my life been guided by invisible signs. I say, “The gods are divining this,” when circumstances allow for something otherwise unlikely.

Like the fact that, after years of trying, I was accepted into a program for journalists at Loyola Law School in Los Angeles that summer. An all-expense-paid trip to California landed in my lap.

The gods had served up the perfect cover story.

“Well, Mom,” I told Tee, “if I am already in California, I may as well meet her.”

“You do what you want,” she said. “We will support you. Just please don't tell your children.”

“Okay, Mom, I won't.”

So I wrote Ellen the letter. I told her that, yes, she was my birth mother, and that I was coming to California.

Because life, when you least expect it, is perfect like that.

I
went to California in June 2008. I am tempted to say this was a year before my ALS, but I don't know if that's true. The ALS could have been with me already, but unnoticeable. It could have been with me always, since the moment of my birth.

Suffice to say, I suspected nothing. I spent a week at the Loyola Law workshop, where the keynote speaker was the lawyer who had just won the court battle overturning the ban there on same-sex marriage. “The world is changing,” I kept hearing. “The world is changing.”

And the future so unknown.

Afterward, I visited a dear college friend in Los Angeles, Cathy, whom I had roomed with and traveled with while studying in Switzerland. We talked about old times, broke out photos of the Alps and the Hofbrauhaus and Carnevale in Venice.

I thought of all my parents had given me. They had sacrificed so much to launch Stephanie and me to college. I thought of Ellen. My thoughts pinged uncontrollably back and forth.

I have had such a good life. Why am I doing this?

This is part of you.

What will she be like? What if I don't like her?

What if you do like her?

God, I hope she doesn't lock me in a bear hug and start gushing.

If she's anything like you, she won't.

Ellen lived five hours north of Los Angeles, in Sonoma County. My wine-loving self marveled at my geographic fortune. I was raised by teetotalers, but I have always loved to drink.

A friend hired a driver to take me to Sonoma. Nancy offered to fly out and meet me for the drive. Nancy and I went everywhere together, talked about everything, supported each other through every major life event. This time, I declined. Not wanting any distraction. Wanting to be absolutely alone.

Just me, my thoughts, and Ellen. A onetime meeting. To hear details. Thank her. And leave her behind. That was my plan.

In the end, I opted to ride a crowded bus. Now that I was here, I didn't want to be alone. I put in my iPod earbuds and played one song over and over, Kate Voegele's “Lift Me Up.” Her sparrow voice rose and fell in tandem with my heart.

This road

is anything but simple.

Twisted like a riddle.

I've seen life and seen love.

So loud

The voices of our mad doubts.

Telling me to pack up and leave town.

I arrived in Sebastopol and holed up in a hotel a few miles from Ellen's place. I had requested that we not talk beforehand. I'd simply appear at her door at the appointed time the next morning.

I walked halfway to her house, judging the distance, working off nervous energy. Then I hung around the Sebastopol town square, watching barefoot women with long hair and tie-dye shirts nurse their children while long-haired men smoked pot.

I bought dinner at the Whole Foods Market. The store had an odor of overripe people or overripe food. I ordered a tofu Reuben (tofu!?) and returned to the square. As I bit into the rubbery Reuben, the thought dawned on me: Ellen's a hippie!

How cool.

I gave the rubbery Reuben another bite, hoping the next one might be better. It wasn't.

A hippie. How . . . cool?

An older man approached me, looking as if he hadn't changed clothes since the 1970s, and smelling like he hadn't bathed since then either. He asked me for a cigarette.

My God, I thought, I hope she's not like that.

Now, don't get me wrong. I love the hippie spirit. And I enjoyed a little Maui Wowie back in college, notably one hazed-over semester as I lusted after a gorgeous UNC swimmer with a four-foot bong and twenty-gallon lungs.

So yes, I have the heart and soul of a hippie. But the taste of a woman from Palm Beach. I love BCBG, high heels, nice jewelry, and good hygiene. I would not be caught dead in a pair of Birkenstocks or with hairy armpits.

I handed the time traveler a cigarette and my tofu Reuben, still oozing Thousand Island dressing. “You'll enjoy it much more than me,” I told him, heading back to my hotel.

Now, when I get nervous, I get calm. Yes, I know. Makes no sense, but 'tis true. Before I do a live shot on national television, for instance, I consciously slow my breathing and heart rate. Breathe, Susan, breathe, I tell myself, slowing down.

The morning of meeting my birth mother, I passed on the coffee and did just that. I showered, gathered myself, and selected a very plain outfit. Jeans. Black shirt. No jewelry.

Hippies don't like gold chains, I thought.

But, boy, I do!

I slipped my high wedge heels into my bag. Couldn't meet my birth mama in flats, I thought, that just wouldn't be me.

Mom had made Ellen a small photo album, with a picture of me from every year of my childhood, from newborn to college graduate. Tee had taken the time to find special photos for a stranger she was so fearful of.

A precious gift for Ellen, and more so for me. That photo album was the dearest and most surprising thing Mom ever did for me. It was so stunning in its thoughtfulness and care, it overwrote her mistakes of the past.

I took a long look at that album, kissed it, breathed. I slipped it into my bag. I set out walking to Ellen's house.

And immediately felt lonely.

I called Nancy, crying. “I wish you had come,” I told her.

“I am at your side in spirit,” she said, crying too.

I walked and walked, up a steep incline, out onto a highway lined with apple orchards. I realized I had misjudged the distance. It was miles farther than I thought.

Shit. Shit! I'll be late. She'll worry I'm not coming.

Then that snarky thought pinged again: She waited forty years. She can wait a little longer.

I slowed down, getting my Zen on, staring at the orchards. The trees lined up like soldiers, protecting me. There were brown hills braided with green grapevines. White puffs overhead. It was beautiful.

At the top of Ellen's shady lane, I stopped and slipped out of the present. I pushed aside emotion and became an observer of my own life. As I walked down the short road, I started mentally recording, as if making notes for a newspaper article: bushes, mailbox, trees, sky. I stood at the top of Ellen's driveway, gazing at her small house. It was deep red and kinda looked like a barn. A vast rose garden neatly edged a small patch of green grass.

I put on my high heels, sticking my flats in my bag. As I reached to unhook the latch on the garden gate, I was surprised to see my hand shaking.

The front door stood open, the mesh screen shut. the queen is in, said a sign at the door.

Oh boy, I thought.

The wind chime tinkled.

“Hello?” I called out.

For a minute, nothing, and then there she was, standing on the other side of the screen door. Healthy. Smiling. Casual. Warm.

“Hello. I'm Susan.”

“Hello. I'm Ellen.”

“Sorry I'm late. I walked. It took me longer than I thought.”

“You walked all the way in those shoes?” she said, pointing at my heels.

“No, I have sneakers.”

When she heard of my shoe switch, Ellen later told me, she knew I was her daughter.

Ellen opened the screen door, and I stepped inside. She did not hug me. Nor I her. We simply stared at one another, time downshifting into slow motion.

Her eyes. Her small blue eyes. They were mine, just bluer.

Her calves. Her ankles. All my life, people had complimented me on my calves and ankles, and there they were on her.

Her shirt featured three glasses—white wine, red wine, champagne. “Group Therapy,” it read. It felt like me.

Ellen asked me to sit down. The sofa was plaid, a folded blanket on the back. Bright yellow walls. A lamp with a pink-fringed shade like you might see in a boudoir. Some modern glass knickknacks. Some Asian-inspired pieces. Books, books, books. And outside, visible through a window, that gorgeous rose garden.

“My mother made something for you,” I said, crying, and handed her the photo album.

And just like that, it began. An easing of the soul. A way to a better understanding of my personality. My quirkiness. My directness. My little bit of hippie with a sense of style.

A
year later, on our way to Hawaii in the summer of 2009, John and I spent an afternoon with Ellen. So much for thanking my birth mama and leaving her behind. She was a part of my life now. I wanted John to meet her. I wanted to know her better.

We went to a beach park. We took off our shoes. John laughed when he saw our feet side by side, bunions bulging, the same French fry toes. “Now I know you two are related,” he said, as he took a picture of Ellen and me from the ankles down.

I told John and Ellen I wanted to write a book. “You should call it ‘Bunions in the Sand,' ” John said.

I had noticed my withered left hand only a few weeks before. I didn't mention it on that trip, but as I searched for medical answers over the next six months, I realized the serendipity of Ellen appearing when she did.

Ellen came to Florida that year for Thanksgiving. She was visiting her daughter, a crew member on a yacht docked in Fort Lauderdale. (I met her daughter, who was more than ten years younger than me, a few times. Attended her wedding in Seattle. But we've had no contact since then.)

Afterward, Ellen stayed for a few days at a hotel near my house. I had respected my parents' wishes and not told my children about her, but I took them to the hotel, knowing she would like to see them. We swam. We lunched. We took so many pictures Marina asked, “Are you, like, a relative or something?”

“No, I'm just Ellen,” she said.

I showed Ellen my hand. I questioned her about her medical history. Neither she, nor any member of her family, had had anything similar.

I cherish that, especially now, above all Ellen's other gifts: the peace of mind, knowing my ALS isn't genetic. My children will inherit many things from me, but they will not inherit my fate.

Family Reunion

M
om never talked about Ellen. She didn't ask any meaningful questions about our meeting. She didn't understand Ellen's importance to me, and the relationship hurt her. Tee dealt with that hurt through silence: the kind that says more than words.

Her feelings can be summarized in the question she asked Nancy when I wasn't around, the same one she had asked me months before: “Susan still loves us, doesn't she?”

My feelings crystallized around a short cruise Mom and I took together in February 2011. This was four months before my diagnosis, and a few weeks before my trip to New Orleans with Nancy, when I consciously admitted to myself for the first time that I probably had ALS.

Still deep in denial, I spent the cruise on the ship's pool deck, icy beer bucket beside me, thigh-to-oiled-thigh in the sun-worshipping crowd. The international belly flop contest was on: large, hirsute men from Ohio flung themselves aloft into the pool as I led the sideline vocal scoring.

“Ten!” I'd holler out for the biggest splat of skin.

Mom passed her time in our cabin, struggling to relax. The crowds, the heat, the noise, it was too much for her to handle. She was way, way afield of her comfort zone—the one where she controlled everything.

So she found problems. The ship's housekeeping staff had folded our bath towels into animal shapes. Marina loved the cute monkey. Tee promptly unfolded the monkey so the towel would be ready for her use the next morning.

Tee came to me twice at the pool. Once to announce to the men and women around me that I was married. The second time to remind me that if I did not turn in my towel, I would be charged $20, and she would NOT be paying for it.

We were cruising to the Bahamas to attend Mom's family reunion in Nassau. She had paid the way for me and Marina, a generous gift. But she was drawing the line at towels.

It was a serious family reunion, not one of those barbecue-in-the-park deals. During the next day, we did a walking tour of the old family sites and the graveyard, my legs still strong. Two of our relatives' graves were unmarked. We placed flowers. My parents talked of hiring a stonecutter to mark the graves.

A Greek Orthodox priest gave a history of the faith on the island. Tee's father's family had emigrated from Greece to the Bahamas and Florida. The Damianos clan had been among the seminal Greek Orthodox families in the area.

Even though Tee's mother had raised her Southern Baptist, Tee never lost her Greek heritage. In one of my favorite childhood memories, Mom would tickle me, bury her pointy nose in the corner of my eye, and wiggle it around. Her Greek nose, she called it. Even noses, in memories of my childhood, were Greek.

We returned to the ship to rest before the formal dinner. The day had gone well. We had enjoyed being together.

Then Tee decided she wasn't going to the dinner. I'm not sure why. Perhaps she was tired. More likely someone had said something that peeved her. My dad followed suit. Then Tee's sister, Sue, elected not to go, followed by Sue's daughter and grandson.

It was a seated dinner at the Nassau Yacht Club, which the organizers had gone to great effort and expense planning—a full buffet and bar, a photographer to shoot each branch of the family.

“It's rude not to go,” I barked at Tee.

No matter.

Marina stayed behind to hang out with her cousin. I set out alone.

My mother's older sister, Ramona, was there with her daughter and son-in-law, Mona and Mike. Ramona is the matriarch of the family and its biggest cheerleader. She keeps up with cousins near and far. Family means everything to her. And there Ramona sat, at a huge festively decorated table, essentially alone.

At the buffet, I struggled holding the plates. My left hand was near useless, and I had trouble cutting my food. I put down my utensils and looked around the room. I saw the large family pods packed around other tables, laughing and chatting.

I had a few cocktails, which was a bad idea. It made our predominantly empty family table seem sadder.

A speaker recounted our family's Greek heritage. Then the emcee asked people to come to the microphone and share memories.

I wanted to share the story of how I had recently discovered my birth history, which included true-blue Greek ancestry. I wanted to tell them how proud I was to be a Damianos. How much their support and kinship meant to me.

I went to the mike, looked out over the faces, looked at our near-empty family table, and started crying. Bawling, really, in front of the crowd.

Mike sent Ramona to stand by me. A cousin, Flora, also came up to stand by my side. They put their arms around me. I eked out something and sat down, appalled at my public blubbering.

“Greek or not, we'll keep her,” Ramona told the crowd.

A few minutes later, thank goodness, a cacophony of whistles, drums, trumpets, and cowbells filled the silence. The surprise of the evening: a Bahamian junkanoo band!

The performers were festooned in feathers and sequins, their headdresses towering over us. They shimmied, bopped, the bass drum
boom-boom-boom
ing, the leader's whistle shrieking to start and stop them parading about the tables. A sinewy young girl performed what I call a booty dance, gyrating her hips just so.

Maybe it's best Tee's not here after all, I thought.

I stepped outside, away from the noise and spectacle. For Tee, the noise and spectacle—especially her daughter's spectacle—would have been too much. She did not understand how much I was struggling.

The next morning, Mom asked me how the dinner was.

“Very nice,” was all I replied.

I
suppose I hoped my illness would close the distance between us. That because I was dying, Mom and I would talk. I wanted to resolve issues from my childhood that poisoned our relationship.

I wanted to tell her that Ellen changed nothing. That she was still my mother, and I loved her just the same.

Instead, Mom closed off. After my diagnosis in June, she did not reach out to me, either for information or to comfort. She would come by for short visits, always leaving after a few minutes. The talk got smaller, not bigger. Sometimes, she barely looked at me.

The door to understanding was closed.

In September, a week after Nancy and I planned the trip to the Yukon, John and I had a small party.
Dateline
was airing a piece on Dalia Dippolito, a local hottie who'd tried to hire a hit man to whack her hubby. I was one of the featured experts, as I had covered her trial extensively in the spring. I had filmed my
Dateline
segment the day after my ALS diagnosis.

“With me,” I told the producer, joking about my slowed speech, “you won't have to worry about filling an hour.”

Mom was excited: she loved to call all her friends when I was on TV. She wasn't coming to the party, but she offered to make her delicious Greek salad, with olives, feta, and her special homemade dressing.

As she handed the salad to me that afternoon, I noticed that the whites of her eyes seemed yellow. I started to say something, but in that moment someone called to ask directions, or Marina asked if she could go to a friend's house instead of hanging out with adults, or Wesley asked out of the blue, “Who's your favorite character in
Lilo & Stitch
?”

When I turned back, Mom was gone.

I got a call from Dad two days later. “We're at the emergency room,” he said. “Mom is jaundiced and vomiting.”

I zipped straight there. Mom was lying in an examining room with a little throw-up vessel handy. She was dressed in a red shirt, jeans, and . . . yellow.

Her eyes. Her face. Even her hands were yellow.

You have to understand, a week before, Mom seemed in perfect health. Even at seventy-one, she walked miles each day. She knew most of the residents on her route, she had done it so long and so often. She led an exercise class at her church. She ate healthy, didn't drink, and absolutely never smoked a cigarette.

She was the cleanest-living person I knew. You had to cajole her to take a Tylenol for a headache. Mom was so healthy, in fact, she didn't even have a doctor.

Jaundice is usually associated with a liver problem. Mom had never drunk alcohol or engaged in any remotely risky behavior, so her problem must not be a big deal, right?

“There's something pressing on her bile duct,” Dad told me. “Something on her pancreas. That's what's making her jaundiced.”

“Is it pancreatic cancer?” I blurted out.

“I don't know. I hope not,” Dad said, steely as ever.

The doctors told us the only way to know was to remove the growth immediately. The surgery nearly killed her—twice. From that moment until four months later, my mother never left a hospital or medical facility.

There were times in the intensive care unit when things were so grave, we scurried to her side in the middle of the night. Times when I held my iPhone up to her ear and played her favorite hymn, “Holy Ground,” convinced she would die that day.

At one point, Stephanie, Dad, and I talked of planning a memorial. “I want a Celebration of Life, not a funeral,” Dad said.

Stephanie still says the saddest thing she's ever seen was me hobbling down the hospital corridor on my weakening legs, trying to reach Mom before she bled out and died.

Mom survived. A miracle to the few, like me, who saw her on the ventilator, unable to breathe on her own.

It was brutal. A time of stress and worry. Of fearing the worst. I would spend whole weeks unable to sleep and days without food.

It was a time also of reflection, for being at the bedside of an extremely ill loved one, when you are extremely ill, stirs thoughts. I saw myself on that bed, with the tubes, the ventilator to breathe for me, the distraught loved ones. When we had to make hard decisions, Dad had no idea what Mom wanted. She had certainly never discussed anything with Stephanie or me.

I decided not to drag my family through that. To plot everything out, with specifics. Medical orders. Hospice. Living will. “I don't want a feeding tube,” I told John after seeing and smelling Mom's. “I don't want to be kept alive when the doctors say the humane things to do is let me go.”

It was also a time of devotion. Of togetherness with Dad and Steph, who were constantly at Mom's side. In his grief, Dad spoke to Steph and me more than ever before. We held our own family reunion, right there at Mom's side.

Those days reminded me how lucky I was to have a family. I felt their love and drew strength from it. These were the people who had always been with me.

And Tee was a part of that. She was my mother. At her bedside, I felt a closeness to her I hadn't felt in a long time. I realized how much she meant to me, as it devastated me to see her suffer so.