Samina Ali, PIECES YOU'LL NEVER GET BACK: A Memoir of Unlikely Survival
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[0:44]Semina Ali is the author of pieces you'll never get back, a memoir of unlikely survival.
[0:50]Semina is also the author of Madras on Rainy Days, which won the French pre-premier
[0:56]Romal et Tolge award, and was a finalist for the Pen Hemingway award infection.
[1:01]She is also a recipient of a Rona Jaffee Foundation Writers Award.
[1:05]She's a public speaker, and her TEDx talk, What the Quran Really says about the hijab,
[1:10]currently has over eight million views.
[1:12]Her writing has been featured in various outlets from National NPR to the Economist.
[1:16]Welcome, Semina.
[1:17]Thank you so much for coming on Totally Booked with Zibi to talk about pieces you'll never
[1:22]get back, a memoir of unlikely survival.
[1:25]Congratulations.
[1:26]Thank you, and thank you for having me on.
[1:29]Oh, it's my pleasure.
[1:30]Your story is so powerful.
[1:32]I mean, after reading it, I was just like, it was a grippier heart, wow.
[1:37]Like, whoof, kind of story, I just cannot believe how much you've gone through.
[1:42]I am so impressed you wrote it as a book.
[1:44]I love how you did it with these super short chapters that are sometimes only a paragraph
[1:49]at length to sort of mirror your mind and all that, and oh my gosh.
[1:52]So tell everybody what happened to you and how you turned it into a book, but basically
[1:57]what happened?
[1:58]So I was 29 when I delivered my son, Ishmael, and at the time, because I was 29 and
[2:06]because I was very healthy and I didn't have any, you know, health issues at all, I was
[2:14]not considered high risk.
[2:16]And I want to emphasize that even though I was born in India, I live in San Francisco.
[2:21]So I was at one of the best hospitals in the nation up here at UCSF, Stanford Hospital
[2:27]for my care.
[2:28]But very early on in my pregnancy, I just kept thinking that there was something wrong.
[2:33]And I kept bugging the doctors and the doctors kept assuring me there's nothing wrong.
[2:37]You're young.
[2:38]You're healthy.
[2:39]Ignore it.
[2:40]And by the time it got to the ninth month, I think they were kind of sick of me,
[2:45]saying that there was something wrong.
[2:47]And during labor is when things just went crazy, all of the complications in the
[2:54]eyebrows.
[2:56]And during delivery, I was complaining of chest pain.
[2:59]I was complaining of this debilitating headache that was worse than the physical pain of
[3:06]giving birth, which as you know, the physical pain of giving birth is immense.
[3:11]It's intolerable.
[3:12]And I kept saying, I think there's something wrong because I'm feeling more pain in
[3:18]my head and in my chest than I am down there and something's wrong.
[3:23]But the OBGYN who was on call didn't take it seriously.
[3:28]He kept dismissing me for the chest pain.
[3:31]He gave me Alka's ulcer.
[3:33]And then when I kept complaining of my head pain, they gave me nitrix oxide, you know,
[3:37]the gas that you put over your face so that it numbs.
[3:41]It takes, it kind of takes the edge off delivery.
[3:44]But 20 minutes after I delivered my son and thank God it was 20 minutes, I had what is called
[3:50]a grand mal seizure, which is the worst seizure that you can have.
[3:54]And it cut off oxygen to my brain for 30 seconds.
[3:58]At that point, they thought, maybe there is something wrong.
[4:01]And then they started to investigate.
[4:04]And that's when they did an MRI of the brain and they found that I had massive hemorrhaging.
[4:10]I had a subarachnoid hemorrhage.
[4:12]My brain was swelling.
[4:13]I had multiple organ failures and the, my blood stopped clotting.
[4:19]I had liver failure.
[4:20]I had given a failure, I had pulmonary edema and that the chest pain that I was complaining
[4:25]to the doctors about during delivery in which they'd given me Alka's ulcer for turned out
[4:29]to be a heart attack.
[4:31]So at that point, they told my parents and my husband at the time, my son's father that
[4:39]if she's lucky, she'll just die because, yeah, because if she's not lucky, then one
[4:46]of you is going to have to decide who is going to be caring for her long term because
[4:50]she's, you know, they pretty much thought I would be a vegetable.
[4:53]I cannot believe, I cannot believe it.
[4:56]And you wrote that your son was also sick and turning blue at his abgar score was so
[5:02]low because nobody knew you had preeclampsia and that Scott, all of a sudden was like, I
[5:08]might lose my wife and my son at the same time and you didn't even know any of this until
[5:13]years later.
[5:15]I didn't know any of it.
[5:16]I was in a coma and I was in the near ICU and he was, you know, going from the NIC ICU where
[5:26]they placed Ishmael up to the neural ICU.
[5:30]So he was going back and forth and back and forth and the doctors actually finally just
[5:35]gave him the recovery room on the delivery ward, which should have been mine and said,
[5:40]stay there and he stayed there for that week going up and down and up and down.
[5:47]Yeah, it was, he was in shock.
[5:49]It was a very traumatic time for everyone.
[5:51]And you're right.
[5:52]I was the one who didn't know what was happening.
[5:55]I didn't understand.
[5:58]And in the book, you say, you know, was I ignored because I am brown.
[6:04]Is that it?
[6:05]Why was I not taken seriously by this, you know, Australian resident or whatever?
[6:10]Of course, they were quickly threats of lawsuits and, you know, the hospital realizing
[6:14]their mistakes.
[6:16]How do you feel about all that now?
[6:19]You know, Zippy, it's healing is a very strange and lengthy process.
[6:26]And everyone goes through that process differently and, you know, one of the concepts of Buddhism
[6:32]that I talk about in the book is Bardo.
[6:36]And Bardo is that a concept of death and often when we think of death in the Western world,
[6:44]we think of, you know, the end of life.
[6:46]It's that big thing that we have to all endure at the end of our life.
[6:50]But Bardo is really the kind of smaller deaths that each of us endure throughout life.
[6:57]So getting a divorce, losing a job, you know, having, being diagnosed with something
[7:03]like cancer and, you know, anything that kind of makes you feel like the rug has been pulled
[7:09]out from under your feet and your life is different.
[7:12]Your life isn't going to go back to the way it used to be that that sense of an ending
[7:18]is Bardo.
[7:19]It's a sense of those little deaths and then the new beginnings.
[7:24]And I had many, many moments where I had to keep beginning again and beginning again and
[7:32]beginning again.
[7:33]And for me, it's, I'm not looking to sue the hospital or anything like that.
[7:41]What I am hoping to do is let other women be aware of, you know, help syndrome and preeclampsia.
[7:50]It's, it is not only the most deadly complication of pregnancy, but it's also the most common
[7:58]complication of pregnancy and the fact that so many women don't know about it.
[8:02]And the fact that so many women are dismissed when they go into the doctors, we really
[8:07]have to begin to learn to advocate for ourselves.
[8:11]And so that's one of the things, one of my hopes with this book.
[8:14]I have many different hopes, but that's one of my hopes.
[8:17]Hello.
[8:18]When you, when you recalled your appointments and how there was always an answer to something
[8:23]like why am I itching this way and why is this happening?
[8:26]And it turned out you were right.
[8:27]And you're like, my husband and I two creative writing people who have no medical training
[8:31]figured this out.
[8:33]Why didn't nobody else?
[8:36]1999.
[8:38]So this was pre Google.
[8:40]So we figured it out based on that, this book that was called what to expect when you're
[8:45]expecting.
[8:46]And it was like a very, very end, like in the appendix and we're like, right, these
[8:51]kind of sound like the symptoms I'm having.
[8:54]So yeah.
[8:55]And even then we brought in the book.
[8:57]We showed it to them.
[8:58]And even then I was dismissed.
[9:00]And yeah, I do think that I'm so sorry.
[9:03]Yeah.
[9:04]Definitely plays a part of it race, definitely plays a part of it.
[9:08]It's just, it's really unfortunate.
[9:10]Oh my gosh.
[9:11]And so it didn't, of course, end in the hospital.
[9:14]You had a very long recovery where you have to put your brain back together again, that
[9:19]you still have so many memories that will not come back, that you like into seeing pictures
[9:25]of yourself as baby.
[9:26]And like, you know, it's you and people tell you it's you, but yet you have no memory
[9:31]of it.
[9:32]It doesn't come back.
[9:33]What does that feel like now?
[9:34]Or just get angry about it?
[9:36]I get very sad.
[9:38]I get very sad about it.
[9:39]I had a, when I spoke earlier about how there are different seasons of grief and different
[9:45]moments when things come back, after I had my daughter, for instance, 10 years later.
[9:52]And I wanted to be there for her during those early months because I couldn't be there
[9:58]there for my son.
[10:00]That was a, there was a lot of grief in those days because on the one hand I was overjoyed
[10:06]to be caring for this newborn and to have the opportunity to do it because I didn't before.
[10:12]But on the other hand, my presence in her life made me so aware of my lack that I wasn't there
[10:18]for my son that I couldn't be there for my son. So it's, it's the absence of many things
[10:26]in my life to continue to create sadness. I have to brothers and sometimes when we get together
[10:34]we'll talk about things for my childhood. And I just, I don't say I don't really remember that.
[10:41]I can't really remember the three of us doing that. I just play along and I laugh because it
[10:46]makes people uncomfortable and it makes me uncomfortable and it's, you know, those are the things that
[10:52]I've lost, you know, and that's why it's the title is Upper Poe, you know, the pieces you'll
[10:58]never get back. But I, you know, it's, we all lose things in life. You know, we, we grow, we develop,
[11:06]we mature, we change and, you know, mine just happens to be a little bit more exaggerated and a
[11:13]little bit more permanent. My gosh. And what was that recovery like? And now you wrote a whole
[11:20]book about it about it. But, you know, just sum it up in a couple of sentences. What recovery is
[11:27]on glamorous, recovery is repetitive, recovery is excruciating. It really is a time in your life when you
[11:38]have to make the decision to recover over and over and over again. And I didn't talk too much
[11:46]about that in the book at the very end about the recovery process just because it is so repetitive.
[11:52]It is, I mean, yeah, you make the same steps over and over again. How many scenes can I have
[11:58]showing that or, you know, you write a book over and over again. And it's just a repetitive,
[12:06]unglamorous, tedious, really dark space to be in. And you have to find it inside of yourself
[12:15]to keep moving forward and to keep moving on. And remember, I was doing this while I was supposed
[12:20]to be caring for a newborn. So on the one hand, you know, early in the process, I saw him as a competitor
[12:30]to my recovery because my mom had stayed back. She didn't return to Minneapolis. She just
[12:35]stayed to help care for me. And any time she cared for him, it felt to me like, wait,
[12:42]you're my mom. You should be caring for me. And so I was in that place where I was in the
[12:49]animal reptilian part of the brain, you know, where I was just in survival mode. And it took a long
[12:55]time. It took a long time for me to get to that place where I could. My body was no longer in
[13:01]recovery. My organs were functioning again. And things were back up and running. And I didn't have
[13:06]to be in survival mode. And I could look at my son. And I could start taking care of my son.
[13:12]But it was a very, very long road. And I want to emphasize that, you know, my neurologist says that
[13:20]in brain damage, especially with something as severe as mine, there is no arrival point,
[13:26]there is no recovery. So I will still have moments of aphasia. I will still continue to have
[13:32]moments where I lack my short term memory and different things will continue to pop up.
[13:39]And yet, despite all of this, you've written a beautiful book, which many of us without brain injury
[13:46]struggle to do. How did you do that on top of everything? When were you doing this? How were you
[13:55]doing this? Oh my God. So when I went to my final neurological follow up exam three and a half years
[14:05]after my son was born. At that point, I passed all of the neurological exams they did, you know,
[14:12]touch your nose, walk and hop on one foot, those kinds of things. But my brain scans also
[14:18]finally came back as normal finally. My brain depleted back to a, you know, I was wrinkly, beautifully
[14:24]wrinkly again. And at that point, my neurologist said, you know, I've never in my 25 years of experience
[14:36]have seen anyone go this far and then actually come back. And that only did you come back,
[14:43]but you happen to be a writer. And he was the one who put the idea in my head and suggested that
[14:49]I write this book that I have to admit to be. I walked out of that appointment. I was like, hell no.
[14:57]Visiting that time, I am not doing, I am just walking away. I'm going to, you know, and it's part
[15:03]of healing, right? Just kind of say I'm putting that out of my head. I'm walking away. And so I
[15:09]did that for years. And after my novel came out, I didn't go back, I left writing for many, many years
[15:19]because anytime I thought about writing, I just kept seeing myself. You know, the process of writing
[15:25]that book was so difficult because when I would go to the desk and sit down, it required so much
[15:35]effort for my brain to put together sentences that it would result in these massive headaches. And I
[15:42]would have to literally turn from my chair and just kind of collapse onto the ground and, you know,
[15:50]in a fetal position. So for years afterward, every time I thought about writing, that's the
[15:56]image that came to my mind over and over. And I was like, I can't do that. So I went out and I did a
[16:01]lot of other things, a lot of other projects. And then at a certain point, I realized that the story
[16:08]wasn't going away. And my neurologist words kept ringing in my head. And I came back and
[16:14]I decided to write it. And you know, it's not an easy process. It took many years. And for a long
[16:21]time, I wrote it all the way through like it would be a, you know, a narrative of any sort. But I kept
[16:27]thinking, you know, something's not right. Something's not right. Something's not right. And it was
[16:34]after many, many drafts and many walks through the park. And that I finally realized that I had to
[16:40]break the structure and do what, you know, you called out at the very beginning and have
[16:45]the chapters mirror the different islands of my brain so that the structure actually mirrored
[16:52]the story. Wow. That's amazing. Well, the end result is incredibly powerful. And I'm, I'm really
[17:02]glad you wrote it personally because, you know, not everybody goes through, not most people don't
[17:07]go through this, right? So, and a lot of people who do then can't end up, end up writing about it.
[17:13]So it's a service you've done for a lot of other people as well. And a novel. I mean, I saw that
[17:18]on your website and everything. I mean, oh my gosh. Wow. Well, so how old are your kids now?
[17:25]My son is 25 and my daughter is 15. Wow. Oh my gosh. And have they read this book?
[17:33]They haven't read it yet. I just got the copies in the mail. Literally,
[17:41]yesterday. So I did, I unpacked it yesterday and, you know, I will be sharing the book now.
[17:48]Wow. How do you think they'll receive it? I think they will have different
[17:53]responses. I think for my daughter, it's, you know, she's 15 and I, you know, I think she's not
[17:59]quite cognitively buried. I think she's just like, thank God you survived mom. That's amazing,
[18:05]you know, but I think for my son, a much older and it's kind of our story. And so I think
[18:12]you'll have a much different response. I think you'll, you'll feel the impact and
[18:17]you'll see it. Hopefully you won't feel guilty about any of it because, you know, one of the things
[18:21]that I want to highlight is that it is, it was such a difficult time in my life. But one of the
[18:31]things that I want to get across in the book is that we all experience these dark times and many
[18:37]people are experiencing these dark seasons right now in life, whether it's because of the LA
[18:44]fires, whether it's because of anything else that's happening in the world. But we need, you know,
[18:50]I think that what I want to show is that we're resilient and we're strong and we can make it
[18:56]through and, you know, to trust trust in our bodies and trust in what we can do and trust in humanity
[19:03]and trust that we can bring the light that we want to see. So for me, this isn't a tragic
[19:10]story. I think it's miraculous story. That gives us hope, hope that we can endure the dark times.
[19:18]You mentioned earlier that one of the things you wanted readers to take away was to advocate more
[19:24]for themselves in the in the medical space. And if there's something wrong and you know it,
[19:31]that you have to keep speaking out for yourself. What, and you said there were there were many
[19:36]messages where there any other messages that you haven't shared yet with me today. I think you
[19:43]you know, the message of hope, I think is really important for me, the message of resilience
[19:48]of hope of holding on and making sure that, you know, even in the darkest times that we're going
[19:53]to endure. But I also think that, you know, having experienced what I did.
[20:00]You know, almost dying or dying, coming back, having to really reengineer my brain, put it back together, put back together to different parts of my organs.
[20:13]It's difficult to come, it's impossible to come back from an experience like that and not be changed.
[20:19]And then I let the core messages that I want people to understand too is, you know, the connections that we all have as humans.
[20:30]And that's really at the bottom of it, you know, our, the way that we are all bound to one another, the way that we're all connected to one another and to get beyond the divisions.
[20:42]And so I think that faith is one of the important themes of the book, and I talk about Islam, but I also talk about how Islam is connected to other legends, whether it's Christianity or Judaism or Buddhism, all of these concepts that we believe in and to allow those concepts at the core, because they are essentially the same to allow those things to bring us together.
[21:09]So, and then even beneath that, you know, it's beneath that whole beneath the spirituality and just recognizing that we're just so connected on such a cellular level.
[21:23]So I think that that's where I went, I went down to that cellular level in order to rise up again.
[21:31]So that was one of the things that I came back with.
[21:34]Well, bravo.
[21:37]It's inspirational, really inspirational, and thank you so much for sharing it.
[21:42]And I'm sorry you had to go through all that, but obviously you've found your way through it and to a place that can help the rest of us.
[21:52]Thank you.
[21:53]Thank you.
[21:54]Thank you so much.
[21:55]You're so welcome.
[21:56]Okay.
[21:57]That was nice to meet you.
[21:59]Thank you.
[22:00]Okay.
[22:01]Bye.
[22:02]Bye.
[22:03]Bye.
[22:04]Thank you for listening to totally booked with Zibi, formerly Momstone, I have time to read books.
[22:08]If you loved the show, tell a friend, leave a review, follow me on Instagram at Zibi Owens, and spread the word.
[22:16]Thanks so much.
[22:17]Oh, and bye the books.