Karen Paul

Defiance

A Year of Flying in the Face of Grief 

I have always been a rules follower. An oldest child, I was keenly aware of the need to behave—in school, at home, in the world. As a little girl, I obeyed “No Trespassing” signs…even on my grandfather’s property. Even at my most rebellious, in college, when I spent a lot of time looking for love and solace in the all the wrong places, I did so quietly and sedately, without causing much scrutiny. I smiled nicely in the workplace when men commented on my body, and never lashed out at street harassment. I got my education, got married, bought a house, had my children, in that order.

One of the first and most important rules announced to you when you have “lost” a person—that is, when a person who is close to you has died—is that you shouldn’t make any big life changes in the first throes of grief. On its face, this seems like sound advice. Mourning someone you loved deeply, your world is turned upside down, and nothing you know seems the same. Your thoughts are scattered, you’re unbearably sad, and the waves of grief keep crashing. The idea of making a huge change in your life seems not only unfeasible, but impossible. Experts advocate for a slow, sure return to the world of the living, the quotidian serving as the best route to a recovery. 

But no one told me that even when you follow all the rules, things can happen that kick your little planet off its orbit, and leave you floating, untethered, in the universe. No one told me that my healthy 52-year-old husband could go to work one morning and, on his way out the door at the end of the day, slump at his desk, be rushed to the hospital, and be diagnosed with terminal brain cancer. No one told me that, even with all our education, our beautiful home and children and our challenging and wonderful jobs, we could be catapulted into the world of illness and caretaking and slow but imminent death.

 But this is not that story. This is the story of what happened after all of that, after my husband drew his final breath, after my children lost their beloved father and spent a year learning how to go on without his love and support. This is what happened after my husband died, and left us to figure out the rest of our lives on our own. This is the story of my year of defiance and saying no—flying in the face of all the advice about not making grand gestures and big changes. For it was those changes that actually saved my life.

After the year of round-the-clock caretaking that preceded my husband’s death, I needed to leave the space in which I had been a prisoner of brain cancer. A prisoner who, by the end, when my husband was in home hospice, had learned how to dispense morphine and take blood sugar measurements and wash and change a grown man and see the person who was once my partner in life become completely disabled, enfeebled and victimized by the scourge of misaligned brain cells.

So just days after we had buried my husband, and got up from our week of sitting shiva, and begun the hard work of climbing out of our very dark place, I decided it was time to travel.

 ACT OF DEFIANCE #1: Taking a big trip with my teenage daughter that required money, planning and an adult with the wherewithal to get us where we wanted to go. Which was Israel.

 Once I decided that this was the plan, I bought the tickets with barely a moment’s hesitation. We spent two glorious weeks soaking up the Israeli sun and spending time with loving friends and family. It was the first of a series of moves I made over the course of my first year of loss that rubbed against the grain. Followed closely by:

 ACT OF DEFIANCE #2: A tattoo. Now really rubbing against the grain. I had wanted one for many years, but was kept in check by how much the idea had bothered my husband. And, to be honest, my own sense of fear about its permanence. On the other hand, I have always wanted to be the subversive mom.

So, several days into our trip, I walked into a random-but-clean- looking tattoo shop in Tel Aviv, and within an hour, sported a small hamsa on my left ankle, its purpose both to ward away the evil eye and to make me feel strong. I was the talk of the sewing circle back home, where my loyal friends were busy quilting together a pile of my husband’s handpicked t-shirts to make a quilt for my youngest son, so that he could snuggle in it and stay close to his dad. I had shocked some of my friends, made others giggle, and pleased myself no end. I adore my tattoo, and indeed it does make me feel both strong and protected.

Returning home from Israel, with the hamsa already working its magic, I was filled with energy and enthusiasm. My grief had not yet settled in, and the emotional and physical crash I was to experience was still down the road a bit. It was very clear to me that there was only one thing that would fill the hole that now existed in our home and our lives.

 ACT OF DEFIANCE #3: A dog. We had never had a dog. My husband was adamantly opposed to having a dog, grumbling every time the subject came up, that he would be the one stuck walking it on icy winter mornings. A friend told me, when I started thinking about getting a dog, that it was much more expensive than I realized. And that after a year of caretaking, I probably needed a break from having something that needed me so much.

However, I took one look at the children in my house, grieving by themselves behind the closed doors of their rooms, and knew that we needed something to be the happy focal point of our family. So off to the shelter we went, and we came home with Bo. A big, black-and-white mix of a dog, a dog who doesn’t bark and just wants his belly rubbed. Bo is a force of love in our house. All four of us are drawn to him every time we walk. He is smothered with kisses, fed inordinately well, and even has his own Instagram page. In short, we’re not sure if we rescued him or he rescued us. My third act of defiance has brought love and happiness back to our lives.

As summer changed to early fall, my manic energy started to flag. I realized that I couldn’t outrun the grief I was feeling, and even all the months of experiencing anticipatory grief were not going to replace my sitting down and wading through the muck of sadness and loss. However, I had one final burst of energy when I saw that an old high school friend, who is an artist, had a painting that was going to be in a show in Brooklyn. I decided that I could make some meetings in the city and then head out to Brooklyn for the gallery opening. I announced to our mutual band of high school Facebook friends, many of whom I had not seen in decades, that I would be coming up for the show and would love to have dinner with anyone who was around.

 This adventure reminded me of the movie, “Sliding Doors,” in which Gwyneth Paltrow’s life is shown having two separate trajectories, depending on whether she made it into the London Tube just as the doors were closing. Had I not taken a final big breath and found my way to New York that day, I would not have (re)met The English Teacher.

ACT OF DEFIANCE #4: Dating and falling in love. Although my husband had died only three months earlier, I really had been on my own for a year and three months. And when The English Teacher and I saw each other at the gallery opening, two questions ran through my head: 1) Why was he there when we hadn’t been close friends in high school? And 2) What was that funny feeling in the depths of my stomach and that frisson of pleasure that was curling its way up my body?

 Many more Amtrak miles logged and a few errant kisses later, we determined that we wanted to be each other’s person. Today, we are navigating a long-distance relationship, his divorce, my widowhood, our children and our lives. I can assure you, there is nothing sweeter than finding the new person with whom you want to share love and life after two years of sadness and toil and grief. There is guilt involved, and societal disapproval, and a sense that perhaps this has all happened  too fast. But if there’s anything this widow has learned, it’s that life is short, and you truly never know what will happen. If you are lucky enough to have happiness and pleasure find you once again, it’s incumbent upon you to grab them by the neck and hold on tight.

A less-defiant act, but still a big solo decision, was the fallout from the day that, in my still-too-tired-widowhood-stupor, I fell asleep at the wheel for two seconds in traffic and crashed my husband’s car, filled with two teenage boys and me on our way home from a soccer game. Thankfully, we were going 5 miles an hour and no one was hurt. The car was demolished, but the insurance company seemed to think that it had been in really good shape, and I received enough money to buy a big, sturdy Subaru that I adore driving, as opposed to the two small cars my husband insisted we have when he started to worry about our carbon footprint.

I must admit, I love being behind the wheel of a bigger car, sitting higher up and powerful. It was the first time I’d had to make a big financial decision by myself in 27+ years, and I relished it. Executive decision-making suits me. The awful moment of the crash was replaced by a realization that I was beginning to see some of the light that comes with starting a new life out on one’s own.

 So we rounded out the year and hit New Year’s Eve and headed into the winter and early spring. By that time I had become a grief support-group dropout; no one sitting around the table wanted to hear about my new love while in the midst of their own sadness. Plus, I had been blogging both about my year of caretaking and my first year of widowhood, and felt that every time the group facilitators raised a topic I had already visited it and processed it through my own writing. Grief group did not offer me the catharsis that it offers many, so I soldiered on alone in my Year of Defiance.

I had returned to work full time after my trip to Israel over the summer, but never felt quite normal again in my job. My employer had been more than generous, compassionate and humane in allowing me to do whatever I needed to take care of my family and myself in the midst of our two crisis years. But even a few months before I toppled down the rabbit hole of illness and widowhood, I realized I’d been feeling twitchy at work; after 10 years, it was time to re-pot.

 ACT OF DEFIANCE #5: I applied for a new job. And got it. In all fairness, this was a job I had wanted for a long time, and was prepared to tackle. The C.E.O. at my old job, when I called him to tell him that I was going to be leaving, said that he’d assumed I would need to do something new; that when someone goes through such a life-transforming experience, often what’s needed afterwards is a new start. My employer was compassionate and understanding to the end.

But the year was not yet over. I was onto the next act of defiance.

ACT OF DEFIANCE #6: Changing my name. Again. When my husband and I got engaged in 1990, I was as sure as I was of anything that my name would not change. I was raised by an outspoken working mother in the 70s, helped start a feminist newspaper in my high school, and wore my feminist bonafides proudly in the 80s, even while attending a small, elite college where sexism and chauvinism ran rampant through its fraternity system. I wrote fierce articles about campus rape, the Nestlé boycott and birth control. Once in the work world, I spoke out against misogyny and protected myself against sexual harassment, both overt and covert.

At 27, my identity as a feminist was clear, and the idea that I would even think about changing my name when and if I got married had never crossed my mind.

Meanwhile, my husband-to-be had different ideas. While not a Neanderthal about the status of women in the world, he held tightly to family as a priority, and it seemed logical to him that everyone in a family would share a name. And that, given tradition, it would be his name. The question of our family name became the very first Rubicon we had to cross in our not-yet-married life. Ultimately, however, our mutual need for plans and decision-making outweighed political theory, and my need to be a willing partner and, for all my belief in feminist tractate, a rules-follower, made me succumb.

 I said I was willing to hyphenate my name so that our children and I would share a name. But with the hyphen, my original name would always be first. It was the first big compromise I would make in a marriage that required compromises. I know now that every marriage requires compromise, but I felt…well, compromised. And I felt ill equipped to stand my ground. I felt like I had failed myself.

My name had been my power. Never mind that the patriarchal system of our society has made it so that a woman’s “maiden” name is her father’s name; by the time we reach adulthood, we’ve made these surnames our own. I liked the idea of carrying a name to a new generation, and I believed in the talisman of names.

And yet, despite my better angels, I duly filled out the paperwork to change my name to a hyphenate. I dropped my middle name, and my husband claimed it no longer existed. But it did. It was just hidden in an old identity, one that I missed and resented having to leave behind. My new name got mangled many times over the years, long before the Starbucks coffee cup meme.

 Many months after my husband died, I realized, from some deep reserve of personal power, that I wanted to reclaim my name. I asked each of my children if it would upset them if reverted to my original name, without their dad’s—and their own—last name attached to mine. I thought they would feel that I was lopping myself off from them. Instead, they were supportive. They felt it was my name and that I should do what I wanted, a sign that things have changed a great deal from the era when I got married.

I also worried that I was being disrespectful to my late husband. Our shared surname was an identity that had linked us, and I decided to shed it fairly quickly after his death. But I never felt that I owned this name, just that I had borrowed it.

Of all my defiant acts, the most formidable has been the name change. Names are totems. They carry powerful magic. Just as taking off my wedding rings after my husband died was not a symbol of pushing the marriage away, but actually of embracing it as a 25-year moment in my life that is now over, my name reclamation brings me back full circle to the young woman I was, learning how to navigate the world, and to the widow I am today, having graduated from an altogether different learning experience, slowly working once again to stake my life’s fortune.

We have now rounded the corner of the first year. In addition to my six Acts of Defiance, my children and I have experienced the college application and acceptance dance, my daughter’s prom, two graduations, five birthdays (one with the birthday person missing), a presidential election and the ensuing new administration that has knocked us all off center, the anniversary of our infant boy’s death (not a common “first” most new widows have to endure without their partner), yahrzeit, and, rounding out the year, the actual anniversary of my husband’s death, Father’s Day and the unveiling of his headstone at the cemetery, a trifecta of grief and remembrance all on the same day.

The children and I have reclaimed our house as a safe and happy space, and laughed a lot together. Our food systems have changed. We’ve eaten a lot of take-out. Keeping a semi-kosher home has fallen by the wayside, starting way back with my husband’s illness, when it became too hard to maintain the complicated separation of dishes and foods. Keeping kosher had been one of my husband’s requirements when we got married—his feeling that even just the simple separation of milk and meat reminded him of his Jewish identity every time he took a bite. Somehow, however, in the midst of chaos and loss, none of that seemed to matter anymore. 

My daughter is enjoying her freedom with a car; my younger son has a lovely girlfriend. My oldest is struggling with the classic question of college graduates everywhere: What do I really want to do with my life?

In fact, these words ring so true and familiar to me, even 30 years after my own graduation. But the one thing I do know, one year and six acts of defiance later, is that I want to be happy. I want to gobble up the world around me, practice loving acts and squeeze the pleasure out of every aspect of life.

I am convinced that doing all of things that I wasn’t supposed to this year has made me stronger, fiercer, better equipped to take charge of my future. There is nothing like death to make you understand the value of life, and there is nothing like being in control of your destiny, at least to the best of our very human and limited abilities, to foster a sense of being at one with the world.

One final defiant act. On the eve of my husband’s yahrzeit, I returned to the hospital where he had been treated. I felt a strong pull to walk its halls and erase the feeling of despair that accompanied me every time I had been there.

 Outside of the area where I took him for his MRIs, where we checked on the growth of his tumors, I discovered a meditation labyrinth I had never seen before. I slowly entered its circles, and walked its many loops, trying to find both comfort and strength in my steps. Circling the outer rim of the labyrinth were multi-colored Buddhist flags, each one decorated by a patient or a caregiver. On the very last flag, the words of my favorite poet, Mary Oliver, stared out at me and gave me permission to continue my acts of defiance:

Instructions for Living a Life

Pay attention.

Be astonished.

Tell about it.

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Karen Paul is a writer with a focus on essay and memoir, and a non-profit professional who has been raising money for progressive causes for nearly 30 years. She currently is the Executive Director of the Tikkun Olam Women’s Foundation.