Tembi Locke, Writer and Advocate, on Love, Loss, and Creating Healing Spaces

Tembi Locke is a New York Times best-selling author, actor, screenwriter, and TV producer. Her memoir, From Scratch: A Memoir of Love, Sicily, and Finding Home, which she adapted for Netflix, begins with how Locke met her husband, a Sicilian chef, on a street in Florence during a study abroad program, and follows their cross-cultural love story over the next two decades. Although it was love at first sight for Locke and her husband, Saro, his family did not approve of him marrying a Black American woman. Reconciliation with his Sicilian family began just as Saro was diagnosed with a rare cancer and Locke became his primary caregiver during his final years. The memoir also chronicles the three summers that Locke and her daughter spent in Sicily following Saro’s death as they began to piece their lives together again.

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Based on your personal experience, for people serving as caregivers, what kind of support is helpful from the community around them?

I always like to remind people to please check in with your caregiver regularly and be a really good listener. I really appreciated messages that would be left, like a little note on my door, “I'm thinking of you. You're doing such an amazing job. I know it's not easy.” Caregivers often feel unseen and unacknowledged.

If you want to be more of a crisis point-of-contact person and you feel you can commit, that's fantastic. And the crisis doesn't have to be a trip to the hospital. It can also be, if the caregiver is having a hard day, are you the person to call? I had a short list of people who I knew, no matter what time of day it was, they would take the call and just listen.

Another important thing for community is the practical, brass tacks: “I'm going to be that grocery run person for you. I saw your trash bins were out an extra day — I'm bringing those in for you.” If you're at the grocery store and you're buying pasta, buy two boxes, not one, and leave the box at the caregiver's door.

Can you tell me about a time that someone who was part of the health care team made a difference in your experience and your husband’s experience?

I had a nurse say, “You may need palliative care.” It was the first I was hearing of palliative care, so I had to Google it. [Editor’s note: Palliative care focuses on improving the patient’s quality of life.] And then she really helped me navigate the system, put in the request to have a consult about palliative care. Were it not for her, I don't know that I would have known what it was, or if it would have been offered up to us.

The other thing was I had [health care staff], particularly nurses and nurse’s aides, who recognized that we were a family unit. To care for my husband meant to check in with him, not just about how he was [physically] feeling and the smiley face scale, but, “Have you heard from your daughter today?” Acknowledging the aspects of his life that were beyond the confines of his hospital room or that particular office visit.

As the caregiver, it was also checking in with me a little bit just to see how I was doing, or even just pointing us to resources. One person said, “When you have good days, take a trip, do something that's enjoyable.” It was an invitation to keep living and to keep enjoying life. It mattered, because when you're really, deeply in it, I remember being in such a tunnel that I needed a voice from the outside. I needed someone in a lab coat or with a name badge or a lanyard to give me the okay to go do that enjoyable thing.

In your book, you talk about finding ways to bring your young daughter to visit her father in his room in the hospital, which was against hospital policy. Can you talk about some ways that health care can change to better serve us as human beings?

I think whole patient care — whole person care — is kind of the thing we all have to keep in the front of mind.

The hospital policy at the time was that a child could not come up to see her dad. But we all knew he was near the end of life. I knew as the caregiver and as the wife and mom that keeping him from his daughter and his daughter from him, was going to cause additional — and, I felt, unnecessary — emotional pain.

Once, I snuck her into the room. But another time, I had a nurse who said, “I'll help you get your husband downstairs to the lobby.” We put him in a wheelchair. We wrapped him up because he was always cold at the time, and we got him in a back elevator, and were able to get him down to the lobby, and he could see our daughter there. That was someone working outside of the norms of hospital policy. I greatly appreciated the willingness to attempt something that, quite frankly, was life changing for all of us.

As intelligent and bright and imaginative and creative and grounded as we are as a nation, as a people, and as care providers, we can find a way to make it safe for families to gather, even when people are dying. It matters a great deal. I would love to have spaces in the hospital actually designed for families to meet safely. They are supposed to be healing spaces, and there is emotional healing that can happen even when the body is not able to be healed.

You have built bridges across cultures, races, and languages. You’ve also experienced judgement and discrimination, in health care and outside of it. How do you think health care can build more bridges and cause less harm?

There is cultural competency and then there's cultural fluency. We can't always be fluent in every different cultural dynamic — we live in a very diverse nation. But we can come to the table each day understanding that we are meeting the public, sometimes at their worst and most vulnerable and often raw places, and so having some baseline of cultural competencies and beginning gentle questions [is important].

It can look like saying, “Who’s in the room today?” Taking inventory. We all come to the table with assumptions in mind. What happened to me was the assumption that I was a paid caregiver for Saro, my late husband. It was never the baseline assumption that I was his life love and partner and the mother of his child. Right away I was treated as though I were not really a decision maker, not really able to weigh in, in fact, slightly dismissed.

Eventually I put a note on the door that said, “Enter with love.” On the whiteboard in the room I wrote, “Wife is Tembi and she's sitting in the corner.” I had to direct traffic a little bit.

It would be lovely if, as a hospital system, we were to put in these little human checkpoints to remind people that you're about to go in and potentially meet a family, or group of friends, [or] a chosen family. They may not be a biological family, so no one in the room may look like each other. You have to be okay with that, and quickly understand who is the person who is speaking on behalf of the patient, and then really listen to that person.

I know that can get complicated. Hospital spaces are raw spaces. There's a lot going on, and sometimes people are not at their best. I write for television, so I know, there can be a lot of drama happening in those rooms! We're asking a great deal of our practitioners. But just taking a breath, and leading with love. Treat everyone in the room the way you would want to be treated, if you were lying in that bed.

I love that idea of a human checkpoint. We do a lot in health care with checklists and technical check-ins.

It humanizes the person there… As a caregiver, I personalized the room as much as possible. I was doing it very intentionally because I was trying to give visual clues to whoever walked into the room that we were a family. I put a picture of our daughter by the bedside. I put fresh flowers out every day. I put out a bowl of fruit, and a prayer card from Italy. I would do things to sort of say, “Hi, we're real people. We're not just the patient in room 732.”

That’s a lot for you to carry on top of everything else. Is there anything else that you’d like to speak to?

I would just say how honored I am to be in this space and to share from my direct lived experience.

I know the power these spaces have in our lives, particularly when it comes to families. How a child experiences a hospital setting will directly impact his or her relationship with medicine and the ability to trust or not trust, or feel safe or not safe, with these spaces for the rest of their lives.

It is incumbent upon us to be as loving and as grounded and kind as we possibly can. Not just for today, but for tomorrow and the tomorrows after that.

Editor’s note: This interview was edited for length and clarity.

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