The written prescription: facing impotence

I feel helpless. This was not the opening of the column I had planned to write this week. While this is a place for personal reflection, and where I think it’s okay to be dark, it should also be a place for moments of insight that leave me, the writer, and, hopefully, you, the reader, feel that we have arrived at a place of stability, if not safety.

I can’t offer that today. The tragedies, both personal and societal, have blocked me.

It’s not the first time I’ve felt helpless, of course, but I’ve always tried to use that feeling to seek transformation. That’s what happened when my daughter, now 30, was 8 years old and was diagnosed with Ewing’s sarcoma. During the four weeks between diagnosis and the start of treatment, I froze. I became a statue, the only signs of life my eyes streaming with tears and my lips reciting my daughter’s treatment plan.

The first day of chemo, I thawed out. I had work to do, lots of work. Much of healthcare these days is done in the home, which is good for the patient but difficult for the caregivers. I’m sure there were times early on when my daughter would have preferred the confident hands of the nurses to mine. But I became proficient at administering injections and pills, monitoring fevers, checking the operation of the chemo pump my daughter carried in a backpack. For 10 months I administered and monitored, every feeling of helplessness a shadow.

Treatment completed, but without any certainty of recovery. With nothing to do but wait, much longer than the four weeks I had to wait at first, helplessness resurfaced. I looked for weapons to repel him. I wrote. Raw and unfiltered. Then I shaped each sentence into a representation 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 to what she had already undergone. Although the operation was a success, everything went wrong during his recovery. She came out of the anesthesia screaming as if she had been stabbed repeatedly. Nadia’s pain pump button in the recovery room was as useless as Staples’ “Easy” button, a gimmick I never understood. When the malfunction alarm sounded, the nurses insisted that the pump was working properly. They said my daughter was too old to complain so much. Then they blamed each other for the problem. I finally got mad enough to line up the nurses and tell them to fix this. Now! A new pump has appeared. The medicine entered Nadia’s veins. She calmed down.

The antidote to impotence is action. But how do you make a difference when problems extend beyond your family and friends, when people you have no control over behave or make decisions that affect you in harmful ways, when those you want to help are strangers from afar… abandoned communities, when the problems are so great that you wonder how you could possibly help?

In Hebrew school, one of the texts we read was the “Pirkei Avot: the ethics of fathers”. A particular lesson stood out: “You don’t have to complete the work of repairing the world, but neither are you free to give it up. In other words, even though you know you’re powerless to fix what’s broken, you can take action to influence the course of events.

Because of this adage, I constantly wonder what I can do. I’m not just a writer. I’m a teacher. Under the auspices of the Children’s Museum of Manhattan, I have worked with homeless mothers and imprisoned mothers at Rikers Island. An affiliation with Prison Writes has resulted in workshops with young women trapped in the criminal justice system. Confused about how to help doctors and nurses beleaguered not just by COVID but by a host of cracks in our healthcare system, I organized 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, I write checks, I send postcards, I plant milkweed for the monarch butterflies, I write letters to the editor.

I know people have benefited from these efforts. Mothers have become more connected to themselves and each other. Healthcare workers became vulnerable and felt less alone. Young women whose voices had never been heard finally had people who would listen to them. I have supported the work of visionaries.

But right now I’m thinking, So what? I cry for the mothers who are still homeless, the young women who need more than a pen and paper to achieve true freedom. The health system is still rotten. A number of people I have mentored have died.

It’s hard to be at peace with the fact that I’m not a visionary. I created no foundation, no advocacy organization, no campaign, 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 sanity of our children is under siege, when a another glacier melts and the right to drinking water is threatened, powerlessness returns. He puts on an angry face and points a finger at me, accusing me of not doing enough.

I’m not sure I can shake this feeling off, although there is power in sharing my thoughts with you. So I would like to know what you are doing to transform helplessness into something more positive. If you are inclined, leave a comment. In the meantime, I will do what I can to mend the ragged fabric around me, one stitch at a time. Maybe together we can weave a whole garment.

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About Alex S. Crone

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