While my husband was recuperating in the cancer hospital, in between wiping his forehead, holding ice chips to his lips, or pushing blood clots through plastic tubing, I sat on a chair in the hallway and watched other patients. There I could overhear what other partners were enduring, whether their husbands were peaceful or struggling, if loved ones coped by crying, as I did. I wanted to know if their partners had come out unscathed. Mine hadn’t.
In a few minutes during a medical error, he’d lost the memories of his life. An anoxic insult—an acquired brain injury—removed him from his past, took his language skills, altered his personality, wiped out his identity and sexual history, and left him with a permanent disability. In that brief moment, my hard-won relationship with him as an equal, a lover, a co-parent and a friend of nearly three decades was erased too. I became a caregiver.
We lived in the cancer hospital for a month, and I watched the women: the ones who delivered news, slippers and quick consolation before retiring to their lives, and the ones who grittily endured days and nights of routine tests, suffering screams and lousy food, all while appearing respectable. I sat on the plastic chair in my mini-skirt and flip-flops, an unread novel on my lap, watching to see if there was a model for who I might become. Not one would arrive.
I should have known that there couldn’t be any. The female caregiver only has two options—leave or become the martyr.
In marriages where brain injury occurs, the divorce rate is higher if the marriage isn’t well-established when the trauma occurs. Some couples can find their way back to each other after a profound identity change. But most don’t, and some simply stay together out of a profound guilt.
Years after our time at the hospital—after I’d taken us on adventures around the world, taught him how to communicate, educated him about sexuality, even introduced other lovers to our relationship and then written a book about our experiences—I’d realize I was experiencing who we were as lovers no longer bound by our personalities.
“You make choices that subvert the storyline of the caregiver,” a friend said. I knew what she meant. I resisted prescriptive female sacrifices like never speaking my frustrations, or enduring mediocre sex. Instead, I talked with my newly innocent husband about my desires. I’d been a feminist in our relationship before, but I hadn’t lived as a sovereign woman. Now everything from how we managed our financial affairs to where we lived was in my authority. I encountered judgment from others because I was so commanding. Richard had few preferences. I could not have remade his masculine assertiveness—one that had dominated our previous marriage—if I tried.
“Where do you want to go on our date?” I’d ask, week after week.
“What do you want to do, sweetness?” he’d volley back on this and all matters related to home, family, love.
After years of grief, I saw the freedom of not living with a past.
I didn’t want the virtue of the good wife. I was trying to be good to myself so I could stay committed to us, whomever we were now. Even when Richard didn’t know how to articulate his wishes—due to aphasia and the indifference brought on by a kind of identity-neutral state—we were aware that this marriage was ours to claim. How we defined our partnership was up to us, as who we were now, not any ideal others (or my nostalgia) might have for us.
As a woman partnered with a man, in a patriarchal culture, to give up societal approval of being seen as the upright, sacrificing, loyal wife is to give up status. Every story where a woman is available for a male’s use or enjoyment, or where it’s evident that loyalty may be extracted in exchange for a set of moral behaviors, has another purpose—to reinforce the doctrine of stand by your man. And to warn of the consequences when a woman—especially a wife—acts out.
Conforming to an enduring-at-all-costs caregiver role affirms the privilege possible when we act out of ascribed feminine norms. The benefits of trading goods and services for sexual fidelity have been evident since the beginning of marriage contracts, but amongst those in situations like mine, only one kind of woman is honorable—the one who sacrifices everything.
I didn’t know if my desires would be the ruin or the saving grace of my marriage.
No fear bound my husband to a story of himself, which allowed me to leave behind societal restrictions that didn’t serve. His lack of judgment liberated me to do what was right for me, and for us. When I was able to care for myself, I became the best kind of caregiver for him. We found ways to support each other’s self-interest, to care for each other with our authentic selves intact. In this way, I learned I was indeed good.
In the years he’s been recovering from cancer and a brain injury, I’ve heard female caregivers tell stories so intimate they made me weep. Of giving their husbands enemas when their digestion stalled, of never missing their partner’s thousands of medical appointments. I have witnessed women holding scarred bodies as they screamed with hurt that would not relent. I have watched them stay through their spouse’s death and then go on and make meaning from their own lives. None of them had to be confined to an all-suffering role to be good.
The events of caring for another’s body, of helping another survive an illness or trauma, makes us into something beyond righteous. We become whole.
Sonya Lea‘s memoir, Wondering Who You Are, was a finalist for the Washington State Book Award and has garnered praise in Oprah Magazine, People and the BBC, who named it a “top ten book.” Her essays have appeared in Salon, The Southern Review, Brevity, Guernica, Los Angeles Review of Books, The Rumpus and more. Sonya teaches writing to women veterans and trauma survivors. Find her at www.wonderingwhoyouare.com.