Rita Smith-Wade-El was not about to be slowed down by a 2008 diagnosis of triple-negative breast cancer.
There was a year’s worth of chemotherapy for the Millersville University professor. There was radiation, and there were clinical trials. Through them all she taught, guiding and advising class after class of students in psychology and in African-American Studies — a course of study she developed into an academic minor and for which she served as director.
And then there were six years during which her doctors deemed her to be in the clear. Six years of traveling to conferences with students, six years of arranging for noted speakers to address the university about diversity, from poet laureate Rita Dove and playwright August Wilson to political advocate and philosopher Cornel West.
She continued her work for social justice and racial equality in Lancaster city and beyond, and her work for programs that serve people with mental illness and those in need. Through the church she loves — Sacred Heart Roman Catholic Church — she served as a lector, Eucharistic minister and visitor of the ill.
But triple-negative breast cancer, Smith-Wade-El notes, tends to return. And return aggressively.
In 2014, it did.
That meant more treatments, more driving herself to Philadelphia for rounds of chemo before rushing back to her job, her family and her community commitments. After each cycle, the “all-clear” span was shorter than the one before, and the cancer continued to creep through her body. Once breast cancer spreads beyond the lymph nodes, a development called distant metastasis, it becomes incurable. Though the spread may be slowed, the outcome is inevitable.
In the spring, doctors found the cancer had spread to her brain.
In the midst of yet another chemotherapy cycle this summer, Smith-Wade-El said enough was enough. She would, she decided, forego any further medical treatments.
“It didn’t seem like it was being very effective,” she says, “and it made me miserable.”
We talked to Smith-Wade-El in early August about her life’s work in education. On a sweltering August afternoon, Smith-Wade-El, a Crispus Attucks Essence of Humanity honoree, also was wrapping up an online developmental course for graduate students.
And she was in the midst of planning a public “Celebrate Rita” party, held Sept. 16 at Millersville University to mark her retirement, as well as her Oct. 1 birthday, when she will turn 70.
“For some people, they’ll have a last chance to see me,” Smith-Wade-El said in August, “and there are two scholarships I’m trying to get to $25,000,” because then they can be permanent awards at MU.
One is in her own name: the Rita Smith-Wade-El Social Justice Scholarship. The second, named for her late parents, is the Eva Mae and James Edward Smith African-American Studies Scholarship.
And, just this week, Millersville trustees voted unanimously to rename the university’s intercultural center in her honor.
This interview has been edited for length and clarity.
How important is it to you to leave this kind of legacy — the academic legacy, but also for your family? Has that always been your plan?
I actually started the African American Studies minor (at Millersville) and have been director of it. That constituency of students —students in the social justice (field) and in the minor — has always been important to me. So that’s kind of the legacy I want to leave.
Is the way you have to deal with this phase of the illness now, is there a point at which you can kind of ignore it?
Usually I had to go for chemo every week or every other week. You can’t really ignore it. And it wasn’t particularly exhausting. Up until the brain tumor, I actually (drove myself) down (to Philadelphia) and back. It is only recently that it has been something that in any way shut me down. I have not stopped working, I’ve not taken days off in the 10 years (of dealing with cancer).
It’s only since I stopped chemo (in early July), I’m tireder and (have) loss of appetite. That’s why I’m trying to get all of this done (as soon as possible). ... because soon I’m going to be experiencing more end-stage stuff: more loss of appetite, not swallowing, trouble breathing ...
What bothers you most right now?
I’m pretty OK. Probably what bothers me most is the people around me aren’t OK. (A co-worker) cries every time I come to the office. Makes no sense to me. Some of my students from way back start to cry. Or I’ll go, ‘I probably wont be here on this date,’ and they’ll say, ‘Oh, don’t say things like that!’ I don’t understand quite the need for us to pretend that I’m not dying. I don’t understand it.
Is that an extension of what I sense as your very practical outlook?
Did you find yourself going into that “problem-solving researcher” mode when you were diagnosed?
The first time, yeah, I looked up a lot of stuff on triple-negative (breast cancer) and, pretty much, I knew there was a chance it would come back.
Does that knowledge drive your work?
Corpses don’t work well either, you know? So this concept of, ‘Well, (cancer) interferes with my job’ ... nothing like death to interfere with your job. You really need to kind of ... do it.
Is that what constitutes a "good death" for you? Being able to be yourself for as long as you can?
Yeah. But I’m pretty much myself (all the time). That’s who I am. (Losing that ability) would be the hardest part for me, because it seems they have planned for enough painkillers to dose a rhinoceros. So I don’t think I’m going to be in pain.
Sometimes people get delirious; that’s going to bother me. Being forgetful? I’m an academic; those kinds of things are probably going to bother me most.
More than the physical manifestation of cancer ...
So the desire to have things "taken care of..."
My casket is red. I like red. Have eight pallbearers, all women. Got my songs picked out. (Ismail) is going to be one of my people doing my eulogy; Barbara Stengel is going to be the other. My other son (Ayodele) is going to be the lector (doing the readings) ... (I have) a really great headstone, got that paid for and done. Have music that I want played at my viewing. Taken care of all the insurance stuff.
Sounds like that’s kind of, as difficult as it is, kind of a satisfaction?
What I think what it was is, I’m an only child. My mother (the late Eva Mae Smith) couldn’t read and write so I had to do everything when my father died. And then when she died some 20 years later, I had to do everything. So I really didn’t want (my sons) to be stuck with doing all of this.
Also, I wanted it my way. See, they might have have actually buried me in something green or gray or blue ... (“We really wouldn’t have, but that’s OK,” Ismail chimes in from the dining room. “We know you and red. You’re not subtle about that ... the couch, the cars, the kitchen cabinets...”
"I don’t know if I’m subtle about anything,” Smith-Wade-El responds).
I tease my students about my children, that I don’t think my children appreciated (getting everything taken care of). I said I just didn’t want them going, ‘Aruba? (or) Mama’s funeral? Aruba? Mama’s funeral?’ Because they’d probably pick Aruba, if you know what I mean!
So I figured I’d pay for it all so they didn’t have to choose between this fancy funeral and going to Aruba ... funerals are expensive!
What has your experience with death been up until this point?
My father (James Edward Smith) died at 59, then my mother lived with me (until her death). I think her death had the most effect on my older son because he was about 17 or 18 when she died. ... She had kind of been like ‘the mother’ when I was the breadwinner. He took that (death) very hard. I couldn’t touch her room until he went off to college. I couldn’t do laundry because I didn’t do it like Grandma, so he did the laundry.
Unlike most people, since I had a relatively small family, there wasn’t a lot of people to die. (My parents) both came from very large families, families of 13, and I don’t think I felt particularly devastated by the death of any of my aunts and uncles.
Do you believe that dying is the end of your story?
No. I’m a devout Roman Catholic. So I not only believe in life after death, I believe in purgatory. So yes, my family’s been Catholic since slavery.
So I tend to have typical Catholic beliefs, probably a little radical for up here because I was educated by Jesuits. So me and the Pope get along perfectly fine; the rest of the Vatican seems to get upset with him regularly ... but I grew up in D.C. Things weren’t as conservative.
Does that faith come up in your daily thoughts (about having terminal cancer)?
I’m a secular Carmelite, which means I have to do morning and evening prayer and office, and also contemplative prayer. But I’ve been doing that for a couple of decades, so that’s just part of ... so that’s kind of been my thing.
Do you think that facing death at the age you are now, that you would have faced illness and death differently when you were 20, or when you had small children?
I don’t know. I think it’s really difficult to say what you would have (done). I think I would have been most affected when I had small children, do you know what I mean? Because they didn’t really have fathers and that around, you see what I’m saying? Even though I had husbands, they just weren’t (active fathers). And remember, I had children later — Ayo at 32 and (Ismail) at 41.
Don’t know how I would have felt at 20. Probably less bothered than most people think 20-year-olds are. ... I could see a lot of young people would be angry. I don’t know if I would be angry. But some feel anger because they feel they’ve been deprived of these chances ...
Feel they’ve been cheated.
Feel they’ve been cheated. And certainly, at this age, I don’t feel I’ve been cheated. No. I think some of my students and friends feel they’ve been cheated with me going ‘early.’ Now, I’ll be 70, so I’m not sure how ‘early’ (it is to die), but since people live to be ripe old ages, I guess they consider that early.
My mother died at 75, so I will have died younger than my mother did but older than my father did.
Do you find that your activities are slowing all at once — though it seems you’ve been able to maintain a lot of it. Do you still get to go to church, for example?
Well, at this point (in mid-August), probably in the last week and a half, I’m having people (from church) bring me communion every day, do you see what I’m saying?
But I was at a conference in Atlanta that I took 10 students to at the end of May, then we had our family reunion almost at the end of June, and we traveled (to Athens, Georgia) for that. ... So up until three weeks ago I was doing everything I’d always done.
Do you find that the impetus is even stronger, to keep teaching, to keep going?
I think at this stage, as I’ve gotten rid of the chemo and I’m heading more toward end-stage, I’m going to be tireder, I’m not sure. Because I would usually teach five courses (a semester) — no, I know I’m not going to be able to do that.
Americans and a lot of Western society have a very divided view of death. Many believe it’s something to be frightened of, or ignored or kept in the background. And you don’t subscribe to that.
No. We’ve changed. I know people who don’t want to take children to funerals. Now, maybe a century ago, when most people lived on farms, life and death (were) part of the cycle.
So I don’t subscribe to (the notion that) kids shouldn’t know about death. Part of what we’re getting is this concept of, let’s hide this. As if some of us have figured out a way not to die.
Crispus Attucks Community Center has named the recipients of its Ruby M. Payne Cook and Essence of Humanity awards. The awards will be presented at the annual Martin Luther King Jr. Breakfast.
And people often aren’t sure how to address it.
I think that’s new. There was a time that people couldn’t avoid the subject of death. In a rural setting, the animals were born; they died. Most people died at home. When most people died at home, surrounded by their family, children saw grandparents die and so on, I think it was different. Death was obvious.
... If you were poor or rural, you didn’t have money for long hospital stays. The urban poor ended up in the poor people’s home; the rural poor ended up dying at home.
(Today), if you have real money, (you go to a top-tier nursing home).
I’m guessing your preference would be to die here (at home).
Yep. I told (my sons), if they put me in a nursing home, I’ll haunt them. My mother had promised to haunt me if I put her in one.
And that used to be very much a cultural attitude among African Americans, Italians, you know, most of the ethnic groups believed if there was any way (to do so), people got to die at home.
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What would be the most important thing for people to remember you for? Is there one thing?
(long silence) I guess being a giver. And what I give would depend on who you were. Even for my students; different students need different things ... I’d like to believe, I’d like to feel, I left a legacy of giving and doing for people.
Is that something that was always inherent in you, or has death made that clearer?
I don’t think those kinds of things are inherent. But my dad was like that. Shirt off his back, and we were pretty poor, but my dad was ... yeah. Mom was more practical. My dad was ‘shirt off his back.’
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Do you and your sons have conversations about your death?
I don’t know (turns to Ismail). Do we have conversations like this on a regular basis?
Ismail: We talk about it pretty regularly these days, yes.
Rita: But often the business end of it.
Ismail: We don’t talk a lot about — I mean, sometimes we do — but not a lot about grief. About things that need to be done next, things that need to be taken care of ... she’s gonna have her bed here (gestures to a sun-filled dining room), so things like getting the dining room cleared out.
Rita: Yes, very much the practical side.