APPROACHING THE PODIUM is an attractive woman with long auburn hair and a sweet smile. Some of the organizers look a little surprised, since she wasn’t on the printed program for this luncheon.
She moves the mic closer.
“Hello. My name is Ali Walensky. I’m 25 years old, and on December 15th, 2016 [she reaches up and removes what is a wig. She continues, bald head held high]… I was diagnosed with breast cancer. I’m here to thank Planned Parenthood for saving my life.
“Last August, I started having some pain in my chest; similar to a sore muscle. By September the pain developed into a lump. With my family history of breast cancer and the BRCA1 gene mutation, I knew I had to get screened. I was able to schedule an 8:30am appointment with Planned Parenthood.
“The nurse who did my exam noticed the same lump I had, and referred me for an ultrasound. ‘It’s probably nothing, but you should get it looked at just in case’. Luckily, I’m 25 and still covered under my mother’s comprehensive healthcare plan thanks to [she pauses] Obamacare.”
After the ultrasound came the fine-needle aspiration biopsy, the lymph-node biopsy, a mammogram, and more. The Planned Parenthood physician who’d ordered the tests called the next day, said Ali, to see how she was doing, and to find out if she’d found a breast specialist. “She also gave me her direct number in case I needed someone to advocate for me.
Ali was at the podium in March at a Planned Parenthood event in Connecticut; a family friend was one of the organizers. And that’s where I heard her.
We know that not infrequently (alas) Jewish women in their 40s are diagnosed with breast cancer. But several things are striking about Ali. First, her age; she’s young for her diagnosis. Then, her complete comfort with speaking about her treatment to an overflow audience of nearly 600 people, and (forgive me if this sounds old-school) her charm. I met her by chance after the luncheon in the place where all good conversation starts—the women’s bathroom. I shamelessly took her contact information—and the folded copy of her remarks she offered me. Plus, we took selfies, because.
Ali grew up in Westchester County, just north of New York City, and went to University of Southern California (“I wanted to get out of my comfort zone,” she told me over the phone a few weeks later) for an undergraduate degree in theater and psychology, followed by a stint with Teach for America. She taught fourth grade special ed. her first year, then two years of theater after that in a charter school in Crown Heights, Brooklyn for kindergarten through eighth graders (“where 89 percent of the kids get free or reduced lunch”).
In an article she wrote for Huffington Post on the selection of Betsy deVos as U.S. Secretary of Education, Ali asked, “What if the cure for cancer is trapped inside the mind of a student who will not get a proper education due to DeVos’s policies?” And she told an interviewer on New York City’s Fox News channel, “I don’t want [healthcare] to be a partisan issue, because I don’t believe my life is a partisan issue.”
Here is some of what else Ali and I talked about in our phone call.
SWS: How did you come to speak at that luncheon?
AW: Originally I was just going to be “acknowledged” and not speak. But people don’t know how much good Planned Parenthood does, and all the lives they save. I’m always someone who is very outspoken, to try to have some good come out of the situation.
SWS: What are other circumstances where you’ve spoken out?
AW: When I was a sophomore in high school, during Proposition 8 [the California ballot initiative eliminating the right of same-sex couples to marry], I started a gay-straight alliance at the school.
And then there were so many biases against the kids I worked with teaching in South Central L.A. when I was in college. All the effort and love put into these communities by parents and teachers… then in the media people held [negative] values about these communities, and really didn’t know them.
If there is something that isn’t true I feel I want to speak about it.
SWS: How did you get to be so comfortably outspoken?
AW: My mom is a very outspoken person. My sister and I were taught by both our parents that equality is important, and that you do not judge others. I was bullied a lot in school and it gave me a perspective about having to stand up—for others.
I have a need to do this. I don’t know if it’s a theater thing. Theater played a role. Growing up, my sister and I saw so many shows, we were exposed to so much culture and so much art that we understood other perspectives. I loved “La Cage au Folles,” “Passing Strange,” “Next to Normal”….
SWS: Can you say a little bit more about being bullied?
AW: I was an outgoing, unique kid, a big theater kid. I was loud. I liked attention. I listened to Broadway musicals, not [NYC pop radio station] Z100. I was just a weird kid. Other kids point out that you are a weird kid. My fashion choices were different. I just liked it—I was not hurting anybody.
SWS: You mentioned your boyfriend in your talk at the luncheon. What’s he like?
AW: I’m living with him in Brooklyn. We started dating in July 2015. He has just been so incredibly supportive. He’s a film editor, and he works from home, which has been great in terms of helping me. He has gone to every appointment with me, every infusion. He’s from Israel, and he’s now there at his best friend’s wedding. He didn’t want to go—he wanted to take care of me after my last infusion. My sister lives in Brooklyn and is staying with me while he is in Israel.
SWS: Let’s go back to the Planned Parenthood experience. How was it that this was the place you turned to first for a breast exam?
AW: My gynecologist was up in Westchester, and I had just started a new job. I had suggestions of other GYNs if I needed—but it’s hard to get an appointment. There’s a Planned Parenthood office in every borough of New York City. I could have gone to a random urgent-care place, but I knew Planned Parenthood had experience dealing with women’s issues, so I knew they would be thorough. And I felt very safe being there. You have to walk through a metal detector before you go in. And you’re surrounded by very thick glass.
SWS: Who else was there? Did you meet other people in the waiting room? Any other young women being treated by Planned Parenthood for breast cancer?
AW: I have gotten there at 8:10 for an 8.30am appointment, and the whole waiting room was already filled. Privacy matters a great deal there—you can’t hear why other people are there. I saw one woman who was [visibly] pregnant, there with a man. It seemed they were going for prenatal care.
SWS: Were your friends surprised that you turned to Planned Parenthood rather than to a private gynecologist?
AW: They weren’t surprised. Many friends go the Planned Parenthood as their gyn. People are worrying about insurance.
SWS: Do you worry about now having your identity linked to cancer? Are you worried about being a poster child for breast cancer?
AW: I’m definitely up for speaking out about breast cancer. I think everyone has to do their self-checks every month. And there are 11 other signs of breast cancer besides the lump. And if you are young, and your GYN tells you “It’s benign, no need to worry about it. It’s nothing. Just keep an eye on it”—always insist for any lump that you get a second opinion, and get a biopsy with every lump. Breast cancer is so uncommon until you’re 35 or 40 that doctors don’t even think of it with young women.
My sister [four years older] was screened right after my diagnosis.
SWS: Do you have specific advice for young women dealing with a diagnosis like yours?
AW: For those facing this diagnosis, it’s OK to be selfish. It’s your time to be selfish. People had to push me to play the cancer card and to be selfish. If it’s a friend’s birthday and you don’t feel well that day, stay home! If you feel really debilitated and need everything brought to you…don’t feel bad about needing this.
SWS: You started a new job just before you were diagnosed. How have you managed work?
AW: I’m now working for the Child Mind Institute—I changed careers to go more into the research side. My job was incredibly accommodating. Luckily, I had a job where at times I could work from home. I would either take my sick days, if I was not well enough to work, or my boss (male, but it would not have mattered) told me to take my computer home and just let him know day-to-day if I would be working at home or not.
SWS: What else has been helpful to you? I ask because people often don’t know what to say or what to offer a friend who’s sick.
AW: Friends have been great. They’ve brought me socks, coloring books. When you get sick and when you talk about it, other people who are also sick will kind of confide in you. It’s interesting to see what secret personal lives people have had—it’s their right not to talk, of course—but you never really know what someone is going through.
I would also say to continue to include someone who is sick in plans. Even if we can’t come, it’s nice to be invited. Don’t bring up our illness unless we bring it up and try not to seem so scared or worried if we talk about it nonchalantly (which I know is easier said than done). Let the person who is sick take the lead and follow their tone. If you’re not sure what to do or say, it’s okay to ask.
At USC I played flute in the marching band. It was a big community, and someone who was my teaching assistant in band created a really beautiful wreath of clothespins—there had to be about 100 clothespins—and had people send her messages. She wrote them on the clothespins and sent the wreath to me.
SWS: How could you do all this in college? Band, school, teaching in South Central L.A.?
AW: I like to be busy. I kind of always have, even when I was little, [I had] chorus and band and Hebrew school and theater and jazz club. I like piling on the activities. My third year teaching, I was musical director for a musical; I ran a three day field trip to the Catskills for 44 fifth graders; I prepped kids for theater programs in high school, and ran a math club which won a team competition. All in addition to teaching. And I created a theater curriculum for the school. They hadn’t had one before.
SWS: You mentioned Hebrew school. Can you say a little more about the Jewish piece? AW: I went to Hebrew school at Larchmont Temple. At USC I was part of JAGs—Jewish Alliance for LGBT and Straights, which won an award for the best religious organization on campus.
SWS: Sharsheret is an organization especially for young Jewish women with breast cancer. Is there any support group you have turned to?
AW: I don’t know about Sharsheret. I’m part of an online group, Stupid Cancer. I’ve asked them, for example, “I’m traveling. How do I pack my wigs?” They said to turn the wig inside out and put it into a fabric bag.
Every time I ran my hand through my hair it fell out in clumps. I actually shaved my head on Facebook Live the day before I got my wig. By the way, insurance will cover wigs. They’re called “cranial prosthetics.” Getting the wig was actually a nice experience. They trimmed the bangs, and so on. I left with a few different pieces. I have one with real hair (the auburn one) and a blue bob, which my boyfriend bought for me. And a “halo”—the hair shows through the hat.
I now volunteer at the school where I used to work—when I am feeling like I’m having a good day—to get out of the house. There, I often don’t wear a wig. Many of the 7th and 8th graders right away jumped to cancer. A 7th grade boy asked how I felt when I shaved my head—a very empathetic question from a boy in 7th grade. I told him that I felt very pretty without my hair to hide behind. It was liberating. But now I’m ready to have my hair back. I had my last infusion this week.
I’m very excited to eat whatever I want and not worry about how I will react. To eat and not worry! To go out without being tired and needing to sit down! When I start feeling more like my old self, I will find what I want to do.