About a year ago we got a hospital bed for my husband, moved it into the bedroom and shoved the king bed we shared aside. He lost his ability to walk after he’d fallen in the bedroom and hit his head, resulting in a small brain bleed. At first I thought I’d still stay in the room with him, but it wasn’t long before I couldn’t stand sleeping there any longer. I just couldn’t rest with his mumbling, a noise he made whenver he moved his restless stiff legs on the plastic-covered mattress. So, I moved into the second bedroom. He didn’t like being trapped in the hospital bed, with its side rails, but it was where he would be safe. He didn’t like me in a different room, either.

One evening he took off his wedding ring. I was startled, but he’d been losing weight for some time from his disease and assumed he might’ve been afraid it would fall off. Or, was he no longer comfortable wearing the wedding ring in a greater, symbolic sense? I wondered whether he was separating from me, divorcing me in a small way, even as he was becoming increasingly dependent on me.

A month ago, he wanted to take my ring off after a tough confrontation. He needed to be moved to the bathroom; I couldn’t move him, lift him, take care of him. And as I tried and kept failing, fearing he was going to fall or that I’d hurt myself, I kept shouting. Both of us got angry and by the time we were resettled in the living room, he was mad and said, “we are not compatible.”  He stopped talking and groped at my finger, trying to brush off my ring.  “What, do you want me to take off my ring?” Yes, he nodded.  “Well, I’m not going to, damn it. Not ready for divorce, after forty-seven years.” (Though, secretly I thought I’ve had enough!)

He used to say in early years of our marriage, whenever he had a bout of depression, “I want to be alone.” Sometimes he didn’t even want to read in the same room. There were times he didn’t want to go to the movies, or to a party, and I’d have to go by myself.  Now he wants me around all the time, though I’ve got to leave for work, which helps to keep my sanity!

When I realized I had to arrange a burial plot, (you have to plan for the future even if you’re supposed to live in the present), I asked him the difficult question, “where do you want to end up? New York? Connecticut? Illinois? Minneapolis?” After much prodding he would finally say, “I don’t care, I just want to be next to you.”

So I had to not only decide what to do with him if he died first, but also where I wanted to have my final resting place, as they say, though I had no idea where I might be living when the time came. Would it be New York? Would it be Champaign-Urbana Illinois where I’d taught and lived for so many years and still had friends? Would I want to be near my son and his family in Minneapolis?  The future is unpredictable. All that is certain is that some time the separations will come. Life feels like an extended, improvised dance where we repeatedly connect and detach, until the final separation in which we lie alone.

I recently went to Minneapolis to visit my beloved granddaughters for a few days. One night, from his bed in New York he kept calling loudly, “Achsah, Achsah!” He repeatedly asked our aide where I was and this went on throughout the night. He wanted to go to the airport convinced I had gone to Europe or Israel.  It reminding me of when our son was about 10 years-old and would worry I’d go away. Every night as I tucked him into bed, he’d plea with me, “Promise you’ll still be here in the morning, Mom?” This would throw me a bit off guard. Did he not trust me? Did he think I’d leave him, run off, me, the faithful mom who had read him “The Runaway Bunny” when he was a little boy? Perhaps it was more inherently primal.

Well before my husband got sick, whenever I would go out, he would say, “be safe,” as if he feared that if I wasn’t, I wouldn’t return. When I’d go down to Times Square to go dancing to Zydeco or Cajun bands, he said he was afraid I’d get kidnapped.

John Donne, one of my favorite poets, wrote so many intense lyrical poems about love, both human and divine, about his longing to feel connected with God, and the experience of human intimacy and erotic desire. But what stands out to me at this moment in my life is how many poems he wrote about separation.  He wrote “Valedictions” addressed to his lover as he was about to go on a journey overseas. For example, “The Valediction: Of Weeping” and “Valediction: of my Name, in the Window.” These poems express his fear that he will not come back, that he may die, even as he tries to assure his beloved that he will return. He gives her instructions making her feel as if stability will enable his safe return. A kind of magical thinking.   

His most famous valedictory poem “Valediction: Forbidding Mourning,” opens with death, bringing up the subject that the lovers most fear:

    As virtuous men pass mildly away,

   And whisper to their souls to go, 

Whilst some of their sad friends do say 

   The breath goes now, and some say, No: 

So let us melt, and make no noise, 

   No tear-floods, nor sigh-tempests move; 

A strange beginning for a poem offering assurances that he will return to his beloved, that their love is something higher and stronger. But that first stanza makes great sense to me. Donne reminds us, sharply, of what we don’t like to think about—mortality.  He doesn’t allow us forget that even temporary farewells are like death, a separation. Maybe this is why his great valedictory poems, even as they hope and promise the lovers’ reunion, are all obsessed with dying. For every separation is a rehearsal for death. 

I’m not a gloomy person. I love life, take pleasure in it, remembering Andrew Marvell’s poem, “To His Coy Mistress,” urging us to seize the day, with that line: “at my back I always hear Time’s winged chariot hurrying near.”  But two weeks ago, the doctor said it was time for “palliative care.” Now all I can hear is Leonard Cohen’s achingly beautiful song,“Closing Time,” playing over and over again in my head.

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