I ask myself, why do I write?  I write because writing helps me think; it is a way of figuring things out, of understanding experience and life itself.  I suppose there’s a spiritual aspect to it, as if spirituality is connecting the dots, discovering patterns and sensing (or making) some kind of order in the world.  But I write not only for myself, but to communicate, to create bonds, to reach other people, hoping to foster understanding through dialogue or a conversation.

When you put your words and thoughts out in the world, you are open and vulnerable. You never know how others will react, and sometimes it’s a bit surprising. And that’s what happened when I posted my most recent article about the unexpected blessings that come from the aides who care for my husband.

The reactions I’ve gotten from my readers have been overwhelmingly positive. Some have said, “These people are often called ‘my aide’ or worse. They do the most intimate work with our bodies and yet they have no names. I am so happy you gave them names.” “My parents were immigrants too. You present this story wonderfully and honor all immigrants.” “You help all persons who have caretakers.” These comments made me feel so good, that somehow I was making a positive difference while attempting to do something good for others. 

So how surprised I was to learn that not all my aides had the same positive reaction. One of them said I should not have used their names. But wasn’t that just what I’d wanted to do? To my mind to give each of them a name is to recognize their individuality, their humanity, their significance. But she didn’t see it that way. She wasn’t comfortable having her name out there—as if she was being exposed. “Who knows who will see it and what consequences there could be for me?,” she said.  Another requested that i don’t use his picture.

You see, unbeknownst to me, while I thought I’d been posting a loving tribute in their honor, some of them instead felt like I was exposing them to potential trouble. I couldn’t imagine what kind, maybe because I don’t walk in their footsteps. The worry these aides have as immigrants, struggling to make ends meet, worrying about having their benefits taken away, etc.—all contstantly at risk, leading to continued insecurity. Only now do I realize the pressure some caregivers feel to not be too visible and faced with the need to remain invisible for self preservation.

It’s not surprising, given our current president and his administration’s attitude towards immigrants and those who don’t have means. Many Republican lawmakers want to cut “social services” that are “safety nets,” thinking that if they themselves have the safety net of money and investments or a 18k solid gold toilet created by artist Maurizio Cattelan (the Guggenheim offered it to Trump as a long-term loan in the White House)*, everyone who doesn’t is responsible for their less fortunate position. But how would Mitch McConnell feel if his wife was an aide cleaning up her incontinent clients?

Perhaps my mistake had been telling their stories while also giving a glimpse into their personal lives—the very thing that I feel connects me to them, that creates a bond between human beings, which is what I had hoped to illustrate.  But more than one aide told me that they are trained not to get personal and to just do their job. How do they do it? How do they avoid getting close to clients when they have such an intimate physical relation with them, day after day and usually in their home no less. If healthcare aides are not supposed to reveal themselves, to remain detached, to remain hidden, I began to appreciate what a difficult burden this must be.

We human beings are social creatures and have always told stories. I too like telling stories and enjoy learning about a person’s journey through stories they might share. For me, it creates a precious bond between us and tends to expand my vision of the world.  If people knew one another better by hearing about the experiences of others who are different from them, wouldn’t there be greater understanding and peace? Wouldn’t there be less polarization in politics and also racism and hate? I would like to believe so.

Yes, there’s always a risk when sharing personal aspects of our lives. And the need for boundaries, privacy, seems more important than ever these days with unrestrained social media, agencies that collect our data, cell phones tracking our every move, what we do on the internet, our emails, and so on. 

We value privacy for various reasons, but imposed privacy can be a prison (Think about why solitary confinement is the punishment for the worst offenders). For example, I know a woman from Mexico, who was a nurse before she came to the U.S., and has lived here for more than twenty years as an undocumented immigrant. Recently, she could not return home to see her dying father because she feared she wouldn’t be able to return to her family here. Another is a friend who was born in the mid-1950s, into a communist family. Her father was a well-respected doctor yet, because of the “red scare,” she grew up with secrecy, told by her family they should never tell anyone a thing about their lives. To this day, she still sometimes speaks in protective code. 

I understand that.  For I grew up with a strange father, in an unusual family (to put it mildly!), and felt I always needed to hide my past, a past that was full of secrets. What would happen if anyone knew? But that also meant having to hide myself. Finally, after many years (and experiencing success in my profession), I got tired of hiding. I knew I had to write my memoir, even though writing my story meant writing my family story and my father’s. Exposing everything I’d tried to conceal. Now, I’m on the verge of publishing it. It will be out in the world, and I won’t be able to control how readers respond to it, even my beloved family. What will happen? I do not know how some will react and whether my book will stir up hate rather than building bridges or promoting love and understanding.  It’s scary. There are unpredictable consequences of opening myself up, of choosing not to be invisible. 

And so, I understand how several of my aides worry about losing the invisibility that is a necessary burden and on this upcoming holiday I will be thankful for all of them and all that they do.  

*the toilet isn’t in the white house, but now resides at the birthplace of Winston Churchill

When healthcare aides enter your home, some leave quickly. They say it’s too much work or the fit just isn’t right. And some leave for unexplained reasons. But with the good ones, they come in as strangers, but can become part of your life, almost like family.

I find myself learning from them. Most have had hard lives and lacked the advantages I’ve had.  But they’ve been schooled by life; they have wisdom and stories to tell if you’re willing to listen. 

All of our aides are immigrants. They come from Ghana, Nigeria, Jamaica or elsewhere. Doreen, our wonderful aide from Jamaica, said, “do you ever see a white person doing this job? They think they are above cleaning up bodies.” My father, as a homeless young teenager in the Ukraine, washed the filthy underwear of the rich to survive. He told us many times, all work is honorable. He, too, was an immigrant in America.

How could I manage my husband’s care without immigrants? It sickens me that our president insults them as rapists, drug dealers, criminals or would-be terrorists. He wants to build walls to keep them out. If he has his way, America will no longer be a refuge for the exiles, the poor and “tempest-torn,” as Emma Lazarus’s poem on the Statue of Liberty declares.  The aides that we have had come bearing gifts and blessings, as they tend to bodies and minds that are troubled. It breaks my heart that they work so hard for so little money.

Hannah, from Ghana, was the first who came to us more than a year and a half ago, after my husband had been released from rehab. I was terrified, even thought Tony might die at any time. But Hannah said “Only God knows when it’s a person’s time. You can’t get so upset. You have to stay up or you’ll bring him down.”  Soon she told me her story—how twelve years earlier, she gave birth to quadruplets. The last to be born, a tiny girl, had so much wrong that the doctors didn’t expect her to survive. She spent a long, long time in the hospital, and for much of her life has been in and out of their care, but increadibly, not for the past two year. He story was an inspirational miracle. Hannah, a person of deep faith, told me how she’s taken care of Nora all these years with never any respite. After so many hospitalizations and a trachea that has to be kept clean, Nora needs 24 hour nursing care that Hannah has had to fight for. “You have to be strong, Achsah,” Hannah said, “and know it’s not all up to you.” I knew from the first week that Hannah was an angel sent to teach me patience, which doesn’t come naturally.

When I needed more help, particularly during the night, Hannah brought me her brother Aaron, a gentle man, and her sister-in-law Mary, who comforts me when I get afraid, sharing what she knows about what might lie ahead, but assuring we can deal with it. She has spent time doing hospice care, sitting by people, holding their hands when they die.  Mary sometimes looks so serious and somber. Just recently, she told me that when she was sixteen, her beloved twenty-year old sister died. Now, she holds people who are dying, comforting them, doing for them what she couldn’t do for her sister, She becomes attached to these people, as if they are the sister she still mourns, who is always in her thoughts. 

These wonderful beings watch over Tony, caring for him during the day, keeping him safe all night, attending to him when he calls out not knowing what he needs. Aaron has been with us more than a year but I only now learned that his children and wife still live in Ghana. A necessary family separation that enables him to support them. One evening, he said, “how wonderful it is in Ghana. My big family, we all get together.” They sit around, talk, eat and relax, enjoying each other, not staring at cell phones. Aaron’s eyes lit up as he described life there—so different from life here in America. Christians and Muslims get along. “There is no stress. All of us who come over will return to Ghana when we retire. We work here to support our families. But we all want to go back.”

Elijah is from Nigeria. We had a problem when he first came. Tony was having a bad day and Elijah put his hands on him: “Jesus loves you. Don’t worry.” Tony freaked out; he has a big problem with God, let alone Jesus. Elijah knows we are Jewish, but he was hurt. I thanked him for his care, but said he was upsetting Tony. Next time Elijah brought a pamphlet of Paul’s Epistle to Romans, and offered it as a gift to Tony as he was leaving. “Elijah, I’m sorry, but Jews don’t do Jesus!”

Elijah wants to share Jesus, but I’d rather share food. He often goes off to work an eight-hour night job after leaving us. He never brings food. I don’t know when he eats or sleeps. Elijah has his pride, but one evening I asked him to share our dinner. At the table, he began to tell me about how frightening his life was in Nigeria. “Islamists want to make it an Islamic country. There is so much violence; they hate us Christians.” Armed men have surrounded his house at night, invisible in the bush. They might attack his family at any time. He had to get out before they were killed. So a year ago, he came to America with his wife and three young boys. In Nigeria he had been an accountant. He knows many languages, including French and Arabic. But here in America he must work menial jobs. He’s underpaid and struggling, not just to feed his family, but to bring over his 100-year old father from Nigeria, the only one left behind.

Then there is Michael, from Ghana, with a soul as beautiful as his smile. Hannah brought him to us, when she and Mary and Aaron were all going to Ghana for a month. “You will love Michael,” she said, and she was right. Michael took over the 10-hour nights for five weeks. I saw the way he was with Tony—patient, tender, calm, strong and gentle. Night after night, whatever the situation was—whether Tony slept or whether he called out all night -- Michael was steady and calmed him down, displaying the model of patience and kindness.

I liked him so much. The moment he walked in, the spirit in the apartment changed. He was quiet, just did his kind job with grace and competence, while never raising his voice or giving commands to Tony. I longed to know who this remarkable person was. From just a few comments, I knew we shared the same values, despite our different backgrounds. Michael had something I wanted—calm, joy and patience.  Every night when he came in at 10, I asked, how was your day? “Wonderful,” he said, smiling, radiating a peaceful happiness.  Because of this I wanted to learn more about Michael the person. Did he live alone? Did he have a family?  “I’m a lone star,” he said. An introvert, but high on empathy. He told me he tries to put himself in the place of his patient; and he listens. To listen is not to judge, but to understand. Just before he left, he finally told me a little about himself.

Michael lives a simple life; works almost every day of the year, often 12 hour days, then goes home to his small apartment, makes oatmeal, showers, and goes to bed, luxuriating in his sleep. He has three good friends, but that is enough because his needs are met. I’m not sure I’ve ever met a person so at peace, so happy, but he’s worked for it. As a young man, he admitted, he was angry, but then something happened and the anger left. He told me of his experiences with white people he’s worked for. Some people were unkind and made assumptions about who he was just because he was black. But he refused to mirror that prejudice in generalizing about whites, or Jews. “You know, who worked for black civil rights?” he said the morning before his final night with us. “White Jews! Why should I hate them?’ Michael, with his beautiful black skin and his gorgeous white smile, is my model of kindness, empathy, patience, wisdom and goodness.  He is someone I aspire to. Knowing we were going to miss his presence terribly, we took pictures that I’ll always treasure.

Such caretakers are angels; they appear, they leave a message and eventually leave altogether. Many of them have biblical names: Hannah, Aaron, Mary, Elijah. Michael never would tell me his last name—and I said to myself, well that’s how it was in the Bible, when angels came, they didn’t carry a last name with them either.