In the final days of her first pregnancy, Samina Ali felt that something was not right in her body. She and her then-husband suspected she had preeclampsia, an alarmingly common, life-threatening pregnancy complication, as well as cholestasis, a liver condition that can be caused by pregnancy. Her OB-GYN was skeptical, but when Ali went into labor, she began experiencing intense pain in her head and her chest. “I’d never experienced such debilitating pain before,” Ali writes in her memoir Pieces You’ll Never Get Back. “I couldn’t keep my eyes open.” Yet the doctor delivering her baby wouldn’t meet her eyes and recommended she take an Alka-Seltzer.

After giving birth, Ali’s blood pressure skyrocketed, and she had a grand mal seizure. She and her husband had correctly diagnosed both of her conditions. Later, she learned that the pain she had felt in her chest had been a heart attack, and “the head pain the doctor had insisted was me being dramatic … was the result of ischemia, [a] cascade of minor strokes.” After her seizure, she fell into a coma for days, which doctors predicted would result in her death. When she instead woke up, still alive, she was pronounced the hospital’s Miracle Girl. (Simultaneously, she and her family weren’t allowed to speak to the doctor who had overseen her delivery, for fear that they would sue.) But the extensive damage to her brain meant she suffered severe memory loss, aphasia (loss of language), and struggled to bond with her son. Initially, she could not grasp that anything was wrong with her at all.

In Pieces You’ll Never Get Back, Ali vividly recreates her state of mind through the slow process of recovery. This fragmented, elliptical memoir jumps back and forth between her childhood, her alienated experience of brain damage, and her later reflections on her experience. Despite her neurologist’s skepticism when she urgently asked him when she would be able to write again, she persisted in writing her novel Madras on Rainy Days (2004) while still suffering from serious aphasia. Although her initial attempts were unreadable, her grasp on language still incomplete, she attributes her recovery in large part to writing. “For months and then for years,” she writes, “each day I sat down at the computer, I pushed my brain to create new connections.”

In our conversation, conducted over Zoom, Ali and I discussed how writing affected her recovery, her decision to write this memoir so many years after her experience, how medical misogyny and racism affects maternal care, and more.

Morgan Leigh Davies: You’ve spoken about wanting to mirror the structure of brain trauma in the structure of the book. How did you write about an experience that is beyond language in so many ways?

Samina Ali: It was so difficult to do. I joke that the book was as difficult for me to write as it was for me to give birth to my son. It was just such a long process with so many different iterations. 

I’m trained as a fiction writer, and so the first time around, I kept finding myself trying to bring in dialogue, trying to do all of these things that you do with fictional craft. I kept falling into that trap. I wasn’t really talking about what had actually happened with the brain damage. I was more trying to create scenes; and I think, looking back, that it was a way for me to move into this story slowly, because emotionally it might have shattered me to just begin talking about it. 

So I think of it as kind of like a shark, circling and circling until you get the prey. That was the first iteration. After that, I absolutely had to deal with exactly what you’re talking about, which is: How do you get this across? How do you explain to people what it’s really like to view the world from a broken brain? 

Once again, I struggled with the language, but then I realized, we take ideas from Buddhism and different spiritual traditions, and we make them commonplace—you know, We should have a beginner’s mind. We should all see the world as though we’re seeing it for the first time. We should be able to quiet the chatter in our brain. I started to realize that one of the things I could do is take on these common misconceptions simply because I’ve been there now with my brain. I started to realize that I could talk about what that actually means outside of these commercialized spiritual values. 

MLD: One of the things that really struck me about your book was your ability to both write about religion and spirituality in a very sincere and meaningful way, but also to confront some of these tropes. You lay bare a lot of the myths or misconceptions we have about so much that is innate to human life. If the brain isn’t working, that stuff isn’t there, right? 

SA: That is one of the most important messages of the book. Our concept of the afterlife, our concept of God, our concept that we have a soul that will somehow move on after we die: These are all stories that we’ve passed down. I trace how we came upon those stories, all the way back to the ancient Egyptians. Over the centuries, the stories of some sort of soul moving on to a higher place, a better place than what we have on this earth, start to become more and more complicated. Suddenly it’s not just a different version of earth, like the ancient Egyptians thought; suddenly, we create an all-powerful being, we create souls, we create heaven with pearly gates, we create the concept of angels, we create the concept of there being multiple levels of heaven.

Our brain is unable to perceive the end of life. It is unable to see that at some point the brain will simply turn off and we will no longer be here, thinking and imagining and doing all of the things that we’re doing right now. So our brain dreams, and it dreams that it will live on in some sort of afterlife. It’s part of the process of having a brain. I trace it through different world religions and show how each monotheistic faith borrows from other faiths and continues these ideas. All of these faiths, we think of them as being so different, but they’re so interconnected and linked; if all of the different faiths are different branches of the tree, they all go back to the same trunk and the same roots. 

MLD: I’m curious about living with this enormous narrative, whether there’s a temptation to push that away so that it isn’t defining. But also how to acknowledge that your story isn’t about how everything miraculously got better.

SA: You never recover. I still deal with aphasia; I still find words, whether it’s in my email or even when I was writing this book, that I don’t notice the first time around, that only during revision, I’m like, Oh, where did that come from? I still have memory issues. I still haven’t fully recovered all my memories from the past. There’s a lot of little things that people don’t actually pick up on, unless they’re living with me. 

I’m hoping that people understand that the book is really a hopeful message where I’m saying: Yes, I did recover, and we, as humans, have the ability to confront struggles and things that might hold us back. That we can dig into ourselves, whether it’s by finding faith or finding some sort of resilience; that we have the ability, as humans, to overcome our adversities, our struggles, and to become better for it. At the same time, I will say that for many, many people in my life, they didn’t know that I went through this, and so they’re finding out now. The book has come out, and I have been getting messages from friends left and right, going, Well, I didn’t know this about you, I didn’t know what this about you, and I can sense that there is a level of betrayal that they feel because they’re like, Was I just not close enough? Why didn’t you tell me? 

But in fact, our society just doesn’t know how to handle illness. We don’t know how to talk to people when they’re dealing with illness. When we hear that someone has passed away, our first thought is not to give condolences. Our first thought is, Oh my God, what? How do I say the right thing? It’s about us. Even when people heard initially, when I did tell a couple of people about what I went through, you could tell how uncomfortable people get. They look away or they grow silent or they change the subject right away, or in extreme cases they just say, I don’t want to talk about this. 

I think, as a culture, we have to get to a place where we can talk about our grief and our losses and our illnesses and what we’re coping with. I think we have to get to a place where we aren’t just expected to be super healthy 30-year-olds. As humans, we’re going to face different challenges in life. How do we talk about those things and how do we give comfort to one another and how do we create a circle where we can provide solace? So one of the main reasons I stayed silent was not because of me. It was because I was trying to protect other people from my story. 

MLD: You’ve said that you started working on this in some form when you were pregnant with your daughter. What was the decision like to have this document, both as a thing for yourself but also as part of a part of your public life?

SA: When I went in three-and-a-half years after I delivered my son for what became my final follow-up exam with my neurologist, he was the one who, at that point, encouraged me to write a book. He said that as doctors, they can look at a patient from the outside and tell a patient, this is what you’re going through based on medical textbooks, but that as someone who had recovered, I could really give some insight on what happens inside the brain. And I remember walking away from that and thinking, hell no, I’m not going to go back and revisit this story. 

When I became pregnant with my daughter, my son was about eight, and I had remarried. I went back to the same hospital where I delivered my son, because they had all my charts. This time, I went to the chair of OB-GYN, who was a woman, and I said, You have all my medical information, can you safely take me to the end of this? And she did a careful review and she said, Yes, I am willing to do that. But the first time around I’d been 29. I’d never had any sort of medical emergency. All of that helped in my recovery, but this time around I didn’t have those [advantages], and it really could mean that I didn’t make it. 

So the idea that this growing fetus was a ticking time bomb was very painful and scary. I was frightened throughout my pregnancy, and the only way I could deal with the fears was by journaling, and I wanted to leave a record for my son. So that was the first iteration of it, and then it still took me a while to go back to it after that. When I did eventually go back to it and realize it had to be written as a memoir, I knew right away that it couldn’t just be a story of recovery. I mean, who cares? It’s just my personal story. It had to have meaning for other people, meaning that they could take from it that was larger than me.

MLD: So obviously you had a competent professional team for your second pregnancy, thank God, compared to the tremendous amount of medical neglect you experienced in your first pregnancy. But all these years later, preeclampsia remains a very common condition.

SA: I think that’s another myth in our culture, that [since] women have been giving birth since the dawn of time, there should be no issues, you know? Women have been giving birth since the dawn of time, and women have been dying giving birth since the dawn of time. I remember when I was interviewing several OB-GYNs at UCSF when I was writing the book, one of them—this didn’t end up in the book—said that whenever a patient comes in early after they’ve just discovered they’re pregnant, they come in and they’re all giddy, and she said she has to watch herself because her immediate instinct is to say, Pregnancy is a sickness! Because the fact is that the U.S. is the only developed nation in the world where maternal mortality and maternal morbidity are on the rise. It’s crazy. There are places in the U.S., cities and little towns, where our maternal mortality rates are equivalent to those in sub-Saharan Africa. 

It is that bad, and a lot of it has to do with doctors not being well-educated enough to understand and see the signs, and also, I think, unfortunately, women are just dismissed. We’re dismissed all the time. There is a sense that we’re being overly dramatic, that we don’t really know our bodies as well as the doctor somehow knows our bodies. These things contribute to women having to go home and suffer, just as I suffered.

I think the common rage that we are feeling as Americans right now against the health industry is legitimate. It’s very legitimate. We do need to overhaul the medical insurance industry. Why is it a profit industry? It makes no sense. We have to make sure that doctors are aware that even preeclampsia, which is the most common complication of pregnancy, comes in different forms, that it doesn’t always manifest as high blood pressure and protein in the urine. Mine certainly didn’t. We’ve just got to start changing things, but until then, I think that we, as women, have to educate ourselves. We have to feel comfortable pushing, and we have to be comfortable with words like, Oh, she’s nagging; Oh, she’s a bitch; Oh, she’s loud; Oh, she’s coming back again; Oh, she’s persistent. Let them call it that. 

MLD: I was really struck reading the book that you and your then husband had correctly diagnosed multiple conditions and were completely dismissed. I think that’s really common, frankly. 

SA: Unfortunately. Obviously it doesn’t always lead to such a horrible outcome, but sometimes it does. Women who go into the ER because they’re having indigestion, and it’s a sign for women that they’re having a heart attack, but because she’s not having numbness in her left arm like men, she’ll get turned away and go home and die. 

MLD: It’s really hard to stand up against authority figures, including medical professionals, especially  if you’re in labor, which you know. 

SA: It’s a place where two different things start meeting. So it’s the place where the racism and misogyny in the medical system intersect with how women are taught to behave in society. We’re supposed to be polite, we’re supposed to be quiet, we’re not supposed to speak up, and so it’s this intersection where, wait a minute, I have to actually speak up, I have to do the very things I’ve been taught all my life I can’t do, and it’s really unfortunate. 

MLD: I want to go back to the role of language in this book. You partially retrain your brain by writing, and writing and language are threaded throughout the book. I’m curious about that experience and the role of language throughout these experiences.

SA: It goes back to that same idea of gaining as you’re losing, and the sense of everything being so bittersweet. Because when I wrote Madras on Rainy Days during the brain damage, when I was experiencing such severe aphasia and experiencing so much loss, what happened is that I would hear everything in Urdu. So I was hearing the narrator speaking in Urdu, I was hearing my characters, obviously, in Urdu; it was in India. What I would do is, I would have to then translate the Urdu into English and then transcribe it onto the page. 

One of the ways that I had to force myself to relearn English was to begin to use it in my everyday life, not just when I was writing or not just when I was speaking to people around me in the U.S. I had to start really learning to think in English. And then I had to make the conscious decision to speak to my son in English, which for me, for many, many years, was one of the biggest losses imaginable, that he could not speak to me in my own native tongue. 

Interestingly, when he was in college he got this Boren Fellowship through the Department of Defense, and they trained him in Urdu. And when we could speak in Urdu to one another, he suddenly said to me, Mom, it feels like a whole new side of you has opened up. I never knew this part of you. We are different people in different languages. 

So I think for me, the biggest loss has been that Urdu now has become in some ways my second language, only because it’s not the language I think in anymore. It’s not the language I use with my children. I use it only when I’m speaking to my parents or my relatives in India. Sometimes I will miss it so much that I will actually put on Bollywood movies just to hear the language. It’s so interesting, isn’t it, how language is so much a part of our identity.