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Transcript:

KENDALL CIESEMIER [00:00:01] Welcome to United Bodies, a podcast about the lived experience of health. I’m Kendall Ciesemier, your host. 

We are living in a time of collective mourning. Millions of people are mourning loved ones lost to COVID, others are mourning those lost due to rampant gun violence or police brutality. And still others are mourning the smaller or slower losses, the loss of progressive illness, relationships or jobs.

Actually, it can feel like everywhere we turn there’s new loss to be found. Grief is long, complicated, isolating, and devastating. It’s also something that we will all experience. So then the question becomes, if so many of us are experiencing such profound loss in our lives, why isn’t it easier to talk about? 

Joining me today is Wanda Irving, co-founder of Dr. Shalon’s Maternal Action Project. Wanda knows grief well. After losing all three of her children, Wanda decided to channel her grief into alleviating black maternal health disparities, to specifically address the loss of her daughter, Dr. Shalon, who died from complications surrounding childbirth. For Wanda, grief sparked sorrow, yes, but also anger. And she’s used that anger to push the needle on maternal mortality for us all. 

Wanda joins us to discuss grief and how she’s used it to spark a movement. May her experience living with grief be a resonant guide and friend to all those sitting in thick, weighty and seemingly insurmountable grief. 

Wanda, thank you so much for joining me. 

WANDA IRVING [00:01:42] Thank you, Kendall, for having me today. 

KENDALL CIESEMIER [00:01:44] Wanda, I want to start where you think it only makes sense, which is in talking about your children. I wonder if you would start by telling us a little bit about them. 

WANDA IRVING [00:01:56] Well, I had three wonderful children, Kendall. Two boys and a girl. Shalon was my middle child. I lost my youngest son, who was just the epitome of joy and happiness and just loved being outside and exploring. He died when he was 20 months old in a car accident, and we were on our way to a family vacation and we were sideswiped. And he died instantly. It was really hard after that with my other two because my son at the time was nine and my daughter Shalon was four so it was really difficult trying to work through my grief along with their grief. And generally these kinds of things really affect marriages very, very deeply. And it did mine as well because we all grieve differently, and it’s hard to do it together sometimes. And so I became a single mom with two kids and two kids suffering from the trauma of losing a sibling. 

My oldest son was an incredible poet. He self-published over, I think it was nine books of poetry, just loved to write poetry. We called him “Bear” because he was big and he was just full of hugs and love, and his sense of humor was incredible. But when he was 17 years old, he was diagnosed with multiple sclerosis. Now, he didn’t let that define him. It was a very progressive form of it. 

So by the time he graduated from high school, he was going into a wheelchair. He continued on to college. It took him six years to finish, but he wasn’t giving up at all, and he continued to do his studies. He also formed a nonprofit organization called Poetry Lifeline, where he actually got grants to help kids who were having either trouble with grief or just having family issues that they couldn’t deal with. So he would put on these workshops where he would help the kids be able to get through their situations through poetry. His birthday was in February, so on February 4th we celebrated his 32nd birthday. Then on February 14th, he got notification from his mentor that he had been chosen to participate in a program with then President Obama, who was coming in. He was going to be in his Office of Disability as an intern, and he was just overjoyed. So we celebrated with him on Valentine’s Day, and then two days later, he died. They said it was a blood clot, but there was some question about the treatment because he had complained a couple of times about the way he was treated. 

So my daughter and I continued on trying our best to get through. She was a rock. She was just an incredible, incredible person. So warm and kind and just so humble. Even though she had dual PhDs and two master’s and she was, you know, a lieutenant commander in the Public Health Service. She had started her own business called Inclusivity Standards, where she was trying to bring inclusivity into being. She was just my best friend from the time she was 26. In fact, she helped me get through grad school. She talked me into it, at 57 years old, to go back to grad school because it was something I had wanted to do. But then the kids came and I just put it on the back burner. And so she said, If you want it, you go for it. I’ll be there to help. And she was every step of the way. She was in Purdue working on her PhDs. And I remember one time, this is right before she was defending her dissertation, I was having trouble with statistics and she called me and she says, “Well, mom, you know, how can I help?” And it’s like, “Well honey you have to get through your defense.” And she says, “Well, what’s the problem?” And we tried talking over the phone and it’s like, I can’t get this Shalon. And she says, “Don’t worry, mom, we’ve got this.” And she drove 12 hours. 

KENDALL CIESEMIER [00:06:51] Oh, my gosh. 

WANDA IRVING [00:06:52] 12 hours to get to New York, where I was going to school to help me pass a statistics test and then turned around and drove back and defended her dissertation. Wow. That was the kind of person she was. That was the kind of friend she was. People still stop me and tell me how much they they loved her and how much she helped them on their road. And, you know, the mentors she was to people and just the light that she brought to every situation. She was just incredible. So my kids were amazing. And I’m so grateful that I had the opportunity to be their mother. 

KENDALL CIESEMIER [00:07:34] Hmm. Oh, my goodness. Wanda, first of, I just have to say, I’m just so deeply sorry that you’ve had to suffer such a profound loss in your life. And the emotion that I hear in your voice and see is such a beautiful reflection of the love that you have for them and the memory that you keep alive. And I just want to say that I find that to be very beautiful and important, that you allow yourself both to experience that emotion and also to share it with other people because I can imagine that I can feel vulnerable at times. And so I just wanted to say I appreciate you sharing that with me. 

You know, I think the thing about loss, about grief, I mean, you know, that you’ve endured what is, I think, unimaginable grief to so many, is that it is a force that exists kind of always in our lives. Right. It doesn’t ever go away, but it changes. How has your grief changed over the years and in what forms have you seen it take? And maybe what has surprised you about the ways that it has moved through your life? 

WANDA IRVING [00:08:58] It’s you know, sometimes it’s hard to explain that. I think after my first son died, it was just such a shock. It was so intense and relentless. I walked the streets. I just got up in the morning and luckily at that time, I could leave my other kids with their grandparents and I would walk the streets like 8:00 in the morning till four or 5:00 in the evening, just walking aimlessly around because I didn’t know what to do with myself, where to go. It was just so incredibly all-encompassing. As I, I started to get through it because you don’t get over it. You never, ever get over it, but you can get through it. And as I started to get through it, I found myself being extremely protective of the other two. It was like they couldn’t go outside without me panicking or being right there because of the fear that came with the grief. And I just over the years, it manifested itself in so many different ways, on his birthday or on the anniversary of his death, you know, sometimes I wanted to celebrate because that was a life, that was a gift. And I wanted to make sure that he was never, ever forgotten. And I made sure that my older kids knew, you know, their brother, even though he was only 20 months. We talked about him. We never, ever left him out of any family kind of celebrations or whatever. And his birthday, we would always get a cake. And my daughter would always joke that we had to have peanut butter and jelly sandwiches on his birthday because that was his favorite. But it had to be the jelly side down. So we would do that every single year. 

KENDALL CIESEMIER [00:11:08] I love that. 

WANDA IRVING [00:11:09] And then when my older son, because this was probably, what, 20 years, 30 years later, the grief from my youngest son was still there. And it just hit me in the face again with my oldest son. And it was like a punch to the gut. It’s like it, all of the air just went out of my body. But my daughter understood and she sat with me and we got each other through that. And that’s the only way I think I would have gotten through, because at some point you just want to pull the covers over your head and say, “Forget it, I’m done.”

KENDALL CIESEMIER

Yea.

WANDA IRVING
“I’m ready to go now. I can’t take any more.”

KENDALL CIESEMIER [00:11:52] And that would be a reasonable, that’s a reasonable response. 

WANDA IRVING [00:11:56] We kept the different programs going that he had. We paid for them and we kept them going. We would work with kids in the city. We got a grant from Nike, actually, to help with some other programs, so we wouldn’t let that die. And then my daughter’s… ooohh…my daughter’s death, probably. I think at that point I was so angry and that caused me to lose faith because I couldn’t understand why my children had to be taken the way they were taken and that they were such incredible people. My daughter looked forward to having her child. She had done everything right. She had prepared so well and just wanted her baby girl so much and she would have been an incredible mother because that’s the kind of person she was. 

And that, I think, angered me more than anything else. That pain turned to intense anger at what had happened to her and why it happened to her. And so that is what has propelled me and kept me upright, because if not for that and for the beautiful little girl she left behind, I wouldn’t have gotten out of bed. It’s like, forget it, I’m done. I’m just done. 

KENDALL CIESEMIER [00:13:32] Your children are amazing forces, I mean, and they live in you and the work that you do in the world, which we will be talking about. The anger is an interesting note that you mention, because I think oftentimes people will think that, oh, I can’t be angry. Angry is a negative emotion. I don’t want to turn into anger. But in many ways, you know, anger is what you attribute to is being helpful –– to helping you move through your grief. Did you always feel that way about your anger? Did you think it was going to take over you and keep you from relationships with people? Another part of grief that’s that is so troubling is that it’s so isolating. Were you worried about the anger becoming an isolating force? Or did you always experience that as a force that could be harnessed for action? 

WANDA IRVING [00:14:41] That’s a very good question, Kendall. To me, the anger was what kept me going. I didn’t see it as negative at all. What I saw was that this child had been taken and she was a wonderful, wonderful person, contributed so much to society and unfairly. Taken and a preventable death at that. And that’s what angered me more than anything. And what the anger meant to me is that it it kept me focused on not allowing her death to be in vain. That is where it brought me. I didn’t see it as isolating because I think her village and my family understood more than anything what I had lost. And it didn’t isolate me from them. It I think it brought us closer together. If nothing else. And from the very beginning was a positive thing, I think. 

KENDALL CIESEMIER [00:15:56] When did the idea of creating Dr. Shalon’s Maternal Action Project, when did that formulate and come to you in the process of experiencing your anger? What was the what were the steps like? Take us through. Dr. Shalon dies and you’re devastated. And then you realize that this is and perhaps you already knew this is a systemic issue. It’s not a singular experience in America. What was that process like and when did it formulate into the work that you do today? 

WANDA IRVING [00:16:32] When my daughter died, I wasn’t aware of the maternal mortality crisis in America. It was the fact that I had lost my daughter, and it took two years for me to get to a point where I could accept that I was in denial for a while. So it took probably two and a half years for me to get to a place where I could where I realized I don’t think I even accepted it. I realized that that was not going to happen. And that something had to be done because that death was totally preventable and there’s no way she should not have been here raising her daughter. 

And that’s when I started to read. I started to learn more. I started to educate myself on what was going on and what was happening to Black women. And I, I was flabbergasted that this was going on and it had been going on for decades. And that just it totally blew my mind. I just couldn’t fathom that something like this would be allowed to continue. Shalon had an amazing, amazing village. She had people from all across the country that loved her, that were there, that supported me through those two dark years that still support me to today and that are trying their best to do whatever they can to keep the memory of their friend alive, keep her legacy going. And so her her best friend, Bianca Pryor, and her were pregnant at the same time. They had children –– Well, Bianca’s child came two months early and he was in the NICU and Shalon was just devastated when that happened. And she was in tears. And it’s like, “Mom, we’ve got to do something.” And three weeks later, she died. And so one afternoon, Bianca and I were talking about Shalon and her legacy, and we said, we can’t let her death be in vain. We have got to do something to keep other women from dying. And that because that’s what she was all about. 

She had this tremendous, tremendous desire and passion for women’s health. She was known for her work in health equity and health equality. And we said, we can’t let that die with her. What can we do? And so that’s when Dr. Shalon’s Maternal Action Project was birthed with Bianca and myself as co-founders. And we, I think we started talking in September of 2019. We also brought in a friend of mine who had, well, she became a friend because she saw my TEDx talk. And so she came in and we started sitting down and talking about it. Dr. Cari Jackson came in and we said, “okay, this is the group that’s going to form it.” And it was December of 2019. We filled out our paperwork. I think it was the 23rd of December. By January 17th, we had gotten our 501 C3 from the IRS. And it was just amazing to us that we got it in like three weeks. That was just practically unheard of. So that in our mind solidified the fact that this is what we should be doing and this is how we’re going to move forward. 

KENDALL CIESEMIER [00:20:26] Wow. Thank you for tracing that for me. You have said this many times on major networks like Good Morning America. TED Acts that you just you talked about your TED talk. Shalon was far from alone. In 2017, the CDC found that black mothers in the U.S. die at 3 to 4 times the rate of white mothers, one of the widest of all racial disparities in women’s health. 

WANDA IRVING [00:20:53] That’s correct. 

KENDALL CIESEMIER [00:20:54] I mean, how did knowing these stats and understanding the lived experience yourself? How did that arm you for action to really call out the problem and to actually work to fix it? One thing that I loved that you talk about a lot is that Shalon’s mantra was, “I see inequity wherever it exists, call it by name, and work to eliminate it.” How have you lived that through this project? 

WANDA IRVING [00:21:25] I think that is our motto and mantra as well. We’ve taken up that mantle. It’s strange because like I said, we started operation in January of 2020. We had a plan to get out into every community, starting in Atlanta, working our way up the Eastern seaboard and and moving over. We were starting to form groups that we were going to be working with, started joining forces with different organizations. And then, of course, the pandemic hit, which changed everything for everybody. It was just––we knew we had to pivot because being in the community was not a possibility anymore. That’s where we saw ourselves in the community. So we started looking at ways that we could carry on that mantra in more of a digital way. So we set up roundtables, virtual roundtables, where we actually brought in women via Zoom and talked about the issues and what they were going through and how their pregnancies went. What were some of the things that went wrong? Where can we––where can we best find ourselves helping women? And we had, I think, four of those the first year. We had one on Grandparents Day and we talked to mothers who had lost their daughters, said, okay, how are we as grandmothers going to do something about this? Because we have got to stop it. If not us, then who? 

KENDALL CIESEMIER [00:23:09] Mmm I love that. 

WANDA IRVING [00:23:12] So we’ve had those kinds of conversations and then we decided, okay, one of the things that we want to do is get an app out there so that it can reach more people because we can’t reach everybody. So we worked with––Bianca, designed it, we worked with IRelate, which is a company that has a platform on depression. And so our app, which is called Believe Her, is located on that platform. And it started to reach women. It gave them a place, a safe place to come in and talk about some of the issues that they were facing. We have doulas who are available that can talk to them. We are now connecting with a lot of different types of organizations to make it more seamless to get to other fields like mental health. There are, I think, if I’m not mistaken, over 5000 therapists that are available through the app and 90% of them are African-American. The app is also available in 54 languages. So that was one of the other things that we did. One of the things we have done lately is we formed this amazing, amazing partnership with Microsoft, and they have made a commitment to continue to work with us to improve the app and make it into a 2.0 with AI and also a lot of video capability. So we’re really looking forward to what’s coming with that. And I think we’ve formed a partnership with Sutter Health. The other piece to that, though, is to not only help and educate and build awareness, but to also start training on how do we form the coalitions that are needed to change policies? That’s where the problem is. I mean, we can continue to put Band-Aids on the symptoms and all of that, but until somebody starts disrupting and dismantling the racist systems we have in America, nothing is going to change. And that’s what I’m starting to realize. You know, it took me a while. I was like, oh, we are working so hard. We’re going to change this. And then my daughter’s, well it’s what she’s not, it’s not seven years yet, but in January it’ll be seven years. I don’t see any great any great changes, any great advancements in those seven years. And that’s what made me start to realize until we change some of these systems that have been in place since slavery, nothing is going to change. Nothing. 

KENDALL CIESEMIER [00:26:06] You’re exactly right. And, you know, I think it’s such a burden that we put on Black women to push for revolution and push for radical change. It’s always been that way. Black women have always been at the forefront of every movement in America that has been for the expansion and liberation of people, period. When I think about that, and I think about the loss that Black women in particular experience. That’s another level. Whether we have Black mothers grieving the loss of children from gun violence, from police brutality, disproportionately people of color have poorer health outcomes with COVID and other health conditions. What would you want to say to other Black women, in particular, but also to the ways in which white people, people with more privilege, people with more access, people with more power, what can we do to be good allies? So I guess, you know, both your message for Black women in particular and then your message to everyone else who really needs to be locking arms with you and taking up the mantle. 

WANDA IRVING [00:27:19] I think for Black women, the main thing I would say is educate yourselves. Better understand what’s going on, how long it’s been going on and why it’s going on, and then start joining organizations that are in fact in the forefront trying to make the changes that are necessary. You know, educate yourself on the policies that are being developed in your own state. We just have to become more aware and we have to take better control. Vote. We know that is a big one. But make your vote count. You know, find people that are actually going to do things that are in your best interest. And that takes some research. You can’t just vote because someone tells you to or because they’re the same color as you or because they look like a good person. Look at the history. Look at what they voted for in the past. Allies. We need allies. We need us to join together. You know, until all what is it? A rising tide raises all boats. We have to understand that. You know, and I think if we were more in tune with each other and understood that a little bit more, Roe versus Wade wouldn’t have been overturned. We would have been in place to make sure that that did not happen. And there are just rights that are being taken away slowly, one by one by one. I’m waiting on the voting rights to be taken away. It’s like it’s all coming to a head and we don’t realize what’s happening. And we got to wake up. 

KENDALL CIESEMIER [00:29:10] Absolutely. We absolutely have to wake up and pay attention to what’s happening, not even just at the national level, but at the local level, because a lot of. 

WANDA IRVING [00:29:20] That’s right. 

KENDALL CIESEMIER [00:29:20] A lot of the stuff is happening at the local level. And, you know, I guess what I wish for Black women is rest, honestly, awareness for their own safety, but other than that rest, you know, I really think that it’s up to the rest of us to really take on that fight, because it should not be one group of people’s burden to bear. It’s too big an issue to put on already marginalized people who are just trying to live their lives. So that’s my personal appeal, if you will. I wonder, Wanda, how this justice effort that you’ve taken on has changed your grief?

WANDA IRVING [00:30:04] The grief is still there. It’s still there. There are days where I just sit silently and weep. But I realize now, looking at my granddaughter, that I’ve got to do everything I can to make changes so that she doesn’t face the same kind of experience her mother did. And so that grief is being put to use as far as making sure that we do what we can do to help the children. The grief is also in in watching the children of the lost mothers and seeing how hard it is for them and how traumatic it is for them. And I see that through my own granddaughter’s eyes. It’s a difficult road and there are so many children that are left without mothers, and that hurts my heart because there’s no reason for that. They should have their mothers by their side. And I know you had mentioned about, you know, putting on marginalized people the burden. And that reminds me what my daughter used to always say about victim blaming. We didn’t cause this problem. That’s right. We you know, why do we have to bear the burden of it? You know, the problem exists for one thing only because of the color of our skin. 

KENDALL CIESEMIER [00:31:30] Racism, right? 

WANDA IRVING [00:31:31] That’s it. I would say it’s an American problem. And we all have to take a bit of responsibility and do our role and make sure that we change the system, because that’s the only way that we’re going to be able to eradicate the problem. 

KENDALL CIESEMIER [00:31:53] Mm hmm. Absolutely. In many ways, it feels like your work shrinks the distance we have from death, which I think is really hard for people to reconcile, that we all have our own inherent fear of mortality. It’s coming for all of us. No one is immune. And in a lot of your work is working to shrink that distance that we have, the desire we have to look away from something as ubiquitous of a reality as the experience of death. What do you think we have to gain from shrinking that distance? 

WANDA IRVING [00:32:32] It makes us more aware of what––how little time there is. Life is short, you know, and there’s a lot to be accomplished in it. And I think if you understand that a little better, it makes you more open to doing what’s necessary rather than sitting back and letting someone else do it and just coasting it really, it focuses things for you. It puts things into perspective, I think, more than anything. 

KENDALL CIESEMIER [00:33:06] Yeah, I think. It’s such a natural human reaction to want to kind of stay away from that. But I actually think that in walking towards the fear and walking towards the danger, if you will, we can actually realize that the strength of the force that keeps us from looking at these things right, is actually of our mind. It’s like an elusive force that if we actually stared in the face and say, you know, I’m not afraid of this, that we can, we can actually be free to really make change and really attack problems. I wonder, as we wrap up here, you know, you’re reimaginer or you’re a visionary. You are seeing you see a problem and you say there is a better way. How would you reimagine support for dealing with societal level grief? 

WANDA IRVING [00:34:06] That’s an excellent question. I’m not sure I have the foresight to say.

KENDALL CIESEMIER [00:34:12] What could or would have helped you or still help you in your experience?

WANDA IRVING [00:34:19] You know, in my experience, I think the hardest part for me was not having the support of someone who actually understood, who actually had walked in my shoes, not having that kind of access to someone. And I know there are a lot of mental health people out there. I know there are a lot of psychiatrists and psychologists. In fact, I went to a psychiatrist after my first child died, you know, after walking the streets and losing all that weight. They put me in with a psychiatrist. But it didn’t help because it was a man. What did he know about losing a child that you birthed? I went to a woman. All they wanted to do was give me pills. So, you know, that kind of thing. Better understanding or listening to women and believing them and helping them get through this with someone of like experiences would be very helpful. A lot of the things that have come with the extension of Medicare definitely is very, very helpful. 

KENDALL CIESEMIER [00:35:38] Yeah, I was going to say accessible mental health care, what could be potentially––accessible, culturally responsible mental health care? Yeah, it could be a really important feature. 

WANDA IRVING [00:35:50] And doulas for everyone, I wish I had known about doulas. I would have gotten one for my daughter. I didn’t know anything about them. 

KENDALL CIESEMIER [00:35:57] Yes. And also, you know, I think so much of this relates to the care economy and the lack of infrastructure we have around caregivers.

WANDA IRVING

Yes. 

KENDALL CIESEMIER 

Yeah. I mean, I think there are actually a lot of policy things we can do to make grievers more supported in our society. And I think, you know, you’re so right that starting with providing access to folks of people who really understand their circumstance is like one of the most profound and important things that we can give to give to people. 

WANDA IRVING [00:36:32] And if policymakers would bring us to the table when they’re making all these decisions because they’re making them for us, but they are not listening to us, they don’t know what kinds of things can help us bring us to the table. Let us tell you how best to formulate whatever policy or plan you have in mind. 

KENDALL CIESEMIER [00:36:51] Absolutely. Absolutely. Wanda, it’s been such an honor to speak with you. I really appreciate you taking the time to share your children with me, your work, the way in which you’ve used your anger to fuel a justice effort and your vision for the future of grievers in our country. I’m just––I am deeply in awe of you and just really am grateful for you sharing your time with me today. 

WANDA IRVING [00:37:25] Thank you so much, Kendall. I’m just trying to be like my daughter. I want to be my daughter when I grow up. 

KENDALL CIESEMIER [00:37:31] I think you are. I think you are. I want to be like you when I grow up. Thank you so much. 

WANDA IRVING [00:37:37] Thank you. 

KENDALL CIESEMIER [00:37:39] Thank you so much for listening. You can subscribe to United Bodies wherever you get your podcasts. If you enjoyed this episode, it would be so helpful to us if you would rate and review the show that helps more people like you find us. We’ll be back next week with more. 

United Bodies is Ms. magazine and Ms. Studios production. The show is created and produced by me, Kendall Ciesemier. Michele Goodwin is our executive producer.