When Aides Are A Part of Your Life, Part Three: Unexpected Reactions

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