The Color of Love
Page 11
My visits were not longer than two full days unless we had to go to court. On the first day, I would visit Zeit and see what progress had been made in preparing the house to be sold. Always, it seemed, I would find both the house and Zeit in a steady state of decline.
I never saw Zeit move. I never saw him anywhere other than seated in a recliner in the living room, with his feet up. Wrapped in a blanket, no matter how warm the weather might be. The room, like the rest of the house, was overflowing with boxes that never seemed to be emptied or filled. It was like stepping into the very definition of inaction. And it was depressing. His “caregiver” was in the house, but he wasn’t really there, as he was never in the room with Zeit. He was puttering around either outside or in the kitchen. Usually on the phone. But never did I see him interact with Zeit.
“How are you feeling, Uncle Zeit?” I would ask. Just the question brought tears.
“I am tired,” he would cry. “They have taken everything away from me. I cannot make any decisions for myself. They won’t let me see Nette. They won’t let me talk to Nette. They won’t let me do anything. I wish this would all be over.”
To try to comfort a crying child is a challenge. But to try to comfort a nonagenarian who had once been elegant, commanding, and vibrant is devastating and virtually impossible.
If Paula was with me, she would often try to intervene, saying things like, “You know that this is all in your best interest, Mr. Wang. We all just want what is best for you.”
“I know what is best for me,” Zeit would snap back. And Paula would then leave the room, presumably to pretend to pack up a box out of earshot.
“I wish I could make this better for you,” I would say, “that I could bring you to see Nette, but she is sick, Uncle Zeit. That is why you can’t see her right now. We don’t want you to get sick too.”
We both knew it was a lie and that Nette’s illness was not contagious. But it seemed the most compassionate thing to tell him. And so I told the lie each time I saw him. And he let me.
I always started with a chat with his caregiver to get a sense of how his health was, and the answer was almost uniformly the same.
“His mind is fine. His body is failing. He’s old. This is what happens.”
I have never seen someone less interested in trying to make sure that every drop was being drunk out of the cup of life than was Zeit’s caregiver. It was almost as if both he and Zeit were simply waiting for Zeit to die.
I would then move on to Paula, trying to get what information she would give about the preparation of the house for sale.
“We really do need to get the house put on the market, Paula,” I would say. “Can you please give a sense of when you will complete your inventory of Nette’s and Zeit’s belongings? And where you will store them? And which real estate agents you have spoken with about the value of the house?”
“I am doing the best I can,” she would reply. “You don’t understand what a big job this is.” Paula always had an excuse, even if she was being paid by the hour out of this very estate.
“I’m happy to help,” I would offer. “I can come up and help pack boxes. Or I can call real estate agents so that we can start to get a sense of the value of the property. Just let me know what I can do.”
“You can let me do my job. That would be helpful.”
“And you can actually do your job,” I would think to myself. In my outside voice, it was always, “Thank you, Paula. We appreciate all of your efforts.”
Then I would say goodbye to Zeit. “I’ll be back in a few weeks, Uncle Zeit,” I would say. “Take good care …”
And after planting a kiss on Zeit’s damp and wrinkled cheek, I would leave. I tried to never let Zeit see me cry.
Anyone who knows me knows I am a big believer in therapy. I think it is the greatest gift one can consistently give to oneself. And as an act of self-love, it truly has been both life-saving and transformative for me. I often joke with my siblings that I’m going to give them a therapist as a birthday gift. Not surprisingly, they’ve never taken me up on it!
One of the things I have learned about myself through twenty-five years of therapy is that I created a system of defenses designed to insulate me from the many places where I felt I was constantly under attack. I insulated myself inside of my own body by gaining weight. And my emotional defenses meant living in a state where I was constantly bracing myself for the next horrible thing to happen.
I was waiting for the next racist comment to be spoken.
For the next person to tell me that I was not acceptable.
That I was an abomination in the eyes of God. (That was always a favorite.)
That I was “unusual-looking.”
I was constantly waiting for the other shoe to drop. If an animal has been abused repeatedly, its expectation is never that its owner will be loving and kind. Its expectation is that there will be another beating.
That was certainly the case for me with Nette. And during these monthly visits, my defenses, built over years, were on high alert.
I usually went to see Nette on the second day of my visit, and gearing myself up was a process all its own. I have meditated daily for more than twenty years, but on the days I knew I would be visiting Nette, I would meditate twice, hoping fervently that the peace meditation brings me might double. Knowing how particular Nette has always been about appearances, I would dress carefully. I made sure my hair and makeup were at their best so that there was no space for her to comment. Not that it ever stopped her, but in my mind, looking good and feeling good have always been intertwined, and every little bit would help. I was, as is my way, trying to set myself up for success.
Then I would get into the car.
Usually a lover of music and perpetually giving a car concert, I would instead silently drive to her facility, trying to visualize a pleasant exchange between us rather than relive every ugly greeting I had ever received. The drive usually took about twenty minutes. Sometimes I actually talked to myself aloud, hoping it might mean I would hear myself better.
Then, as I pulled up, I would look in the rearview mirror and give myself a pep talk. “You can do this, Marra,” I would say aloud. “You can do anything. An hour with Nette is going to be a piece of cake.” The irony of that turn of phrase was not lost on me, given how often Nette criticized me for my weight—and how much she secretly had always loved cake herself.
The visits always began in the same way—with some version of an unpleasant comment, an eye roll. A combination of passive and aggressive as only Nette could be. And they often ended in similar fashion.
“It’s you,” Nette always said. “Again.” Sometimes the tone was angry. Sometimes it was annoyed. But the words were almost always the same.
“Yes, it’s me,” I would say. “I’ve come to check on you and to see how you’re feeling. How are you feeling?”
“With my hands. How do you feel?” What had always been a joke told by my dear uncle Harold, accompanied by an affectionate tousle of my hair, was biting sarcasm coming out of her tiny, thin mouth. Although Nette by then had what was considered advancing Alzheimer’s, she was fairly lucid—at least when it came to remembering me.
I would then try to get close enough to do my version of a wellness check. To find Nette in fresh clothing and with her hair clean became something of a victory. And that victory only came after I had carefully let Paula know that these things were critically important.
After looking her over, I would spend some time checking in with Nette’s caregivers, asking about her progress and moods and really just cooling off.
“How are her visits with Paula going?” I would ask.
“She really doesn’t come very much. Maybe she comes once every four or five weeks. And she comes for a few minutes, looks at her, asks if there have been any changes, and then she leaves.”
As much as I love being right, I hated being so right about this.
Finally, I would take Nette to the TV
room, where I could defuse her nastiness by trying to chat with the other residents. During my limited interactions with them, they never seemed to have visitors, and they welcomed conversation of any kind.
Unlike my aunt, they were thrilled to see me. Always. It is heartbreaking to see people left alone to slip into the darkness of Alzheimer’s. Perhaps their families could not bear to watch them deteriorate. Perhaps they didn’t have families. In any case, seeing the other residents sitting alone was always what propelled me to try to engage with Nette.
“Is there anything special I can bring for you the next time I come?” I would ask. “Hopefully, we will be bringing you to Chicago so that you can be closer to my mom very soon. Are you sure you don’t want anything?”
Typically, my questions were met with silence.
I would try to file her nails or brush her hair. My touch always caused her to recoil, as if I were burning her skin. The dance, at least, had become familiar.
“Do not touch me!”
I was always amazed that no one ever came running down the long, narrow hallway to see what might be going on. To see why Nette was shouting. If I might need some assistance. But no one ever came. There seemed to be little interest in saving either one of us.
No matter how complicated and ugly our relationship was, I was there. And I was doing my best. Whatever that meant for the day. When I could take no more, I would leave. In spite of my meticulous preparation and double meditation routine, I found that I could handle visiting with Nette for an average of only forty-five minutes at a time. And really, I wanted to leave after about fifteen minutes.
The ride back to the hotel was similar to the ride to the care facility. It was made in silence. But the ride back was always driven through a veil of tears. They always came. I tried to tell myself that she didn’t deserve my tears, but really, I wasn’t crying for her. I was crying for myself. And the sheer madness of the situation in which I had willingly, and somehow not at all regretfully, put myself.
Chapter Fourteen
IT TOOK ONLY A FEW MONTHS FOR AN UNFORTUNATE sense of routine to take hold during my monthly visits to San Francisco. My time with Zeit was always sad because he was so sad. So broken. And so aware of all of it.
My time with Paula was profoundly frustrating because I was forced to swallow every word I truly wanted to speak, forced to bite my tongue until it was raw, and forced to allow her to control the process. My time with Nette was like badly prepared icing on an ill-made cake. It was simply unpalatable.
During one visit, Nette was especially agitated. She could not sit still and was constantly shifting in search of a comfortable spot. On a good day, I could do nothing right. But on this day, I was simply … wrong.
“It’s just not right that I have to have you handling everything,” she said. “Where is your mother?”
“As I’ve told you, Nette, she is sick,” I said. “She has a rather serious kidney issue, and she cannot travel back and forth. I am the only option.”
“Do you even know how to do things right?”
“I am a genius. Remember? In the literal sense?” Insulting my intelligence was a new thing. Even for her. And it was not something I was willing to take lightly. “I’m quite sure I can figure out how to manage you and your care. And if you want me to continue, I’ll thank you to stop insulting me.”
“At least be sure to close the door all the way when you go.”
I gladly closed the door. Loudly. And I left. For both of us, it was definitely time for me to go.
The next month, I put on my figurative armor, gearing myself up for a visit that would be as bad as, if not worse than, the last. It had been, after all, an endless stream of contentious, stressful visits. I had no reason to think four weeks would change anything for the better.
I took the long walk down the dark, narrow hallway and opened the door.
“Who are you, pretty lady?”
I was greeted by a docile, sweet voice. For a moment, I thought I might be trying to enter the wrong room. Then I looked around to see whom Nette was actually speaking to because I was positively sure she was not speaking to me. I guess I had forgotten that she had Alzheimer’s. I had forgotten that, at some point, the disease would do deeper work and change her. And that the routine would then change. I had heard that it happens in an instant. That one moment someone is “there” and in the next moment they are gone. And that is exactly how it happened.
“Who are you, pretty lady?” Nette asked again.
Still, I stood there. Silent. Dumbfounded.
I did not know how to respond.
When I was a young girl and teenager, I wanted to be pretty. No—I wanted to be told I was pretty. Instead, I was routinely told I was smart.
“You’re so brilliant,” people would say.
“You’re so creative.”
But no one really told me I was pretty.
What I really wanted was for certain people to think I was pretty. And for the longest time, Nette was at the top of that list. Given what I considered to be her maximum level of glamour and style at all times, to be deemed pretty by her was my dream. I gave that up, of course, the moment she told me that nothing was worse than my very existence.
I moved closer to make sure she could see me, and I simply said, “It’s Marra.” I waited for the Nette I knew to roar out of her tiny mouth. “How are you feeling today, Aunt Nette?”
Nette didn’t answer immediately. Instead, she smiled a smile as sweet as her voice. After a few moments that felt like an hour, she spoke again.
“I’m feeling fine. Why are you here today?”
Again, I was struck silent, paralyzed in a new land where Nette did not know me, where I was a “pretty lady.” And where I no longer knew her.
You really are very pretty.
She had said it once before—on Alisa’s wedding day. But that was a different Nette, with a very different voice. That time, it was a sneer. Not a compliment. And it did not feel good to be on the receiving end of it. In that moment, I started to shift my understanding of external validation; her comments taught me well that it is far more important for me to define and own who and what I am than to allow that to be dictated by the praise or vitriol of others.
Nevertheless, to hear genuine words of kindness—a compliment, no less—come out of a mouth that had hurled pure racist hatred was stunning. And a bit scary, for I was not sure in that moment if it was real. Or true.
The only thing I knew was that it was different now. Nette was different. That’s the thing about Alzheimer’s. You never know when your person will change. Or how. You only know that once it happens, nothing will ever be the same again.
Anyone dealing with someone with Alzheimer’s knows of the transformation that takes place. So often, people with a loved one living with Alzheimer’s talk about how the disease turns that loved one into a horrible stranger. A person who was once loving and kind might become angry. Vulgar. Violent. The disease brings out the darker, uglier sides of our humanity, thereby making an already heartbreaking decline all the more so. I cannot imagine the pain of watching someone who was once gentle and nurturing become different. And I’ve read many stories about how powerfully sad it is the first time the eyes looking back at you don’t recognize you at all.
But in my upside-down world, Alzheimer’s turned an abusive, mean woman into someone docile. Sweet. Complimentary. And the eyes that no longer recognized me no longer saw me as ugly or inferior. The disease turned Nette into someone I had always hoped she was. Because of the way I experienced it in Nette, I have often wondered if Alzheimer’s and dementia simply bring people back to who they are on the inside, before the world changed them. Perhaps, like the disease itself, each stripping away of memory and persona is different. Perhaps this was the universe’s strange gift to me. A way of letting me see that there was a loving being inside her angry shell. I took it as a validation of a theory I have always held: that we are all born as loving beings. Eventually
, some people let life bury that love inside of an angry, mean exterior.
I’ll never really know why it happened this way. Years later, I find myself still wondering why.
Chapter Fifteen
NO MATTER WHAT ELSE I MIGHT SAY ABOUT NETTE, I do believe that she lived in search of love and romance, and that in the end, she found the best love of her life in Zeit. Of her many husbands, he was the one she was married to longest—and that union lasted for nearly forty years.
Theirs was, to say the least, an unconventional marriage. But I like to think that much like the people who were in it, it was authentic and honest in a way that many marriages are not. Even when it was—perhaps mostly when it was—at its most uncomfortable.
Nette nodded to it herself at my sister’s wedding. That she, as a white, Jewish woman, had elected to take a Chinese husband during the 1960s was considered, at best, scandalous. At worst, it was viewed through the same ugly, racist eyes that had proclaimed my beautiful family an abomination. Either way, it was not warmly embraced.
They were childless. They travelled the world extensively and tirelessly. They were champion ballroom dancers. Nette absolutely had attachments, emotional and sexual, to other men, which Zeit knew about and, on some level, supported.
For them, it worked, even when they were screaming at each other, hurling insults that would certainly belie the idea that love existed between the two of them. It worked. And in a society that can draw “successful” marriages at times in two-dimensional, almost cartoonish terms—always including romantic proposals, white weddings, monogamy, and some level of approval of the match and lifestyle from family and friends—Nette and Zeit defied all of the norms. And they did so without apology.
In many ways, the authenticity of their union inspires me today as I search for something that authentically works for me and my eventual partner. While I don’t wish to have the level of conflict that seemed to be an everyday energy in Nette and Zeit’s marriage, I do want to have a relationship that is about my partner and me—and not about what everyone else believes is the “right” way to do things. I’ve known only one man willing to delve into the, at times, deeply uncomfortable but honest discussions that this kind of relationship requires, and he was very special. I think it truly does take a lot more than most people realize to defy societal norms when it comes to things like marriage and family.