I am feeling helpless. This was not the opening for the column I planned to write this week. While this is a place for personal reflection, and where I think it’s OK to be somber, it should also be a place for moments of insight that leave me, the writer, and hopefully you, the reader, feeling as if we have arrived at a place of, if not safety, stability.
I cannot offer that today. Tragedies, both personal and societal, have me stymied.
It’s not the first time I’ve felt helpless, of course, but I have always tried to use that feeling to seek transformation. This is what happened when my now 30-year-old daughter was 8 and was diagnosed with Ewing’s sarcoma. For the four weeks between diagnosis and the start of treatment, I froze. I became a statue, the only signs of life my eyes streaming tears and my lips reciting my daughter’s treatment plan.
On the first day of chemo, I thawed. I had a job to do, many jobs. So much of healthcare is done at home these days, good for the patient but hard on the caregivers. I’m sure there were times at the beginning when my daughter would have preferred the confident hands of the nurses over mine. But I became proficient at giving shots and pills, watching for fevers, checking the functioning of the chemo pump my daughter carried in a backpack. For 10 months I administered and monitored, any feelings of helplessness a shadow.
Treatment ended, but without any certainty of a cure. With nothing to do but wait, much longer than the four weeks I had had to wait at the start, the helplessness roared back. I searched for weapons to beat it back. I wrote. Raw and unfiltered. Then I shaped every sentence into a depiction of who I had become — a warrior. I felt a little less helpless.
Eighteen months later, my daughter needed corrective surgery. It was a minor procedure compared with what she had already been through. While the surgery was a success, all went wrong during her recovery. She came out of anesthesia screaming as if being repeatedly stabbed. In the recovery room, the button on Nadia’s pain medication pump was as purposeless as Staples’s “Easy” button, an advertising gimmick I never understood. As the malfunction alarm rang, the nurses insisted the pump was working properly. They said my daughter was too old to be complaining so much. Then they blamed each other for the problem. I finally got angry enough to line the nurses up and tell them to fix it. Now! A new pump emerged. The medication entered Nadia’s veins. She calmed.
The antidote to helplessness is action. But how do you make a difference when the problems extend beyond your family and friends, when people over whom you have no control are behaving or making decisions that affect you in ways that are harmful, when those you want to help are strangers in far-flung communities, when the problems are so big you wonder how you could possibly help?
In Hebrew School, one of the texts we read was the “Pirkei Avot: Ethics of the Fathers.” One particular teaching stood out: “You are not obligated to complete the work of repairing the world, but neither are you free to desist from it.” In other words, even if you know you are powerless to fix what is broken, you can take action to affect the course of events.
Because of this adage, I am constantly asking myself what I can do. I am not only a writer. I am a teacher. Under the auspices of the Children’s Museum of Manhattan, I have worked with homeless mothers and mothers imprisoned at Rikers Island. An affiliation with Prison Writes has resulted in workshops with young women ensnared in the criminal justice system. Not knowing how to help doctors and nurses beleaguered not just by COVID but by a multitude of cracks in our healthcare system, I ran workshops for them through the Arnold P. Gold Foundation. After my experience with Nadia, I mentored cancer patients at Memorial Sloan Kettering. I show up at marches, write checks, address postcards, plant milkweed for the monarch butterflies, write letters to the editor.
I know individuals have benefited from these efforts. Mothers became more connected to themselves and to each other. Healthcare workers became vulnerable and felt less alone. Young women whose voices had never been heard finally had people who would listen. I have supported the work of visionaries.
But right now I am thinking, So what? I cry for the mothers who are still without homes, the young women who need so much more than pen and paper to achieve true freedom. The healthcare system is still rotten. A number of the people I have mentored have died.
It is hard to be at peace with the fact that I am not a visionary. I have created no foundations, no advocacy organizations, no campaigns, conducted no groundbreaking research. When there is another school or racially motivated shooting and the war in Ukraine continues, when women’s bodies are abused or stripped of their power and the mental health of our children is under siege, when another glacier melts and the right to clean water is threatened, the helplessness returns. It wears an angry face and points a finger at me, accusing me of not doing enough.
I’m not sure I can write myself out of this feeling, although there is power in sharing my thoughts with you. So I’d love to know what you do to turn helplessness into something more positive. If you’re inclined, leave a comment. In the meantime, I will do what I can to repair the shredded fabric around me, one stitch at a time. Perhaps together we can weave a whole garment.