Dear Suleika, I read your book earlier this year, given to me by my therapist who is treating me through post BMT. I was diagnosed with AML last March and I too had my transplant with my one and only, younger brother's stem cells. Chemo prior to transplant and chemo, radiation and the transplant have been a very rough ride for me. I was devastated to learn that the disease was back for you. I could put myself in your position and just was so sad. But from reading your book, I know that you have strong will which leads to all the courage and strength that you somehow manage to dig up from within, to carry you through all the too many bad moments, hours and days. About two months after transplant and no where in the clear of feeling ok, I too had the same sentiment about my body that you are expressing today as the inspiration for this prompt. Our society is hell bent on this "perfect" body type but the perfect body type is the one that carries you through all the things this life throws its way. Whether it is an illness of some sort or just the day to day grind, or physical activities that push you to and beyond your limits. We, as a society, should move towards this outlook of our bodies where we stop focusing on the shape, size, appearance of it and celebrate how it endures, compromises, complies with what we ask it to do. Then we will always be grateful for the many days, which lead to days that our body has carried us through so that we can live, love and enjoy the gifts this life has in store for us. Thank you always for sharing with us. I, along with the world, am praying for your smooth, successful journey out of this difficult time. Hoping this time around is a shorter duration for you.
I just want to thank you for helping me to reframe the way I see and relate to my body. I am currently struggling with end stage anorexia nervosa and palliating at home. I spent years starving myself as a means of coping with trauma and other mental health issues and now my body has told me “enough!” Ironically, it is happening at a time when my will to live is so strong so I am praying for a miracle and reading your memoir and these newsletters is one of my main motivating tools for keeping my head focusing on a hopeful, healthy future for myself.
I feel so blessed to have found you and I really hope that you heal up soon and don’t have to suffer too much longer. You bring so much hope and joy and inspiration to me Suleika and one of my future dreams is to come meet you in person at a book signing because of how much your words and story have changed my whole outlook on life and my relationship to my body.
Jan 9, 2022·edited Jan 9, 2022Liked by Suleika Jaouad
Making Baskets With Nipples
———-
I was always a boobs girl.
For mine.
As soon as they started growing, I grew fond of them. Not too big, not too tiny. Always a consistent reminder when the air was cold. Always a willing participant as I got older and decided to flash someone like a good guy friend in college drunk across the bar... or my husband years later on an important business call. My boobs enjoyed surprising a few people and making them laugh.
And they had a maternal instinct too. They were very willing to nurture and breast feed two babies, one of whom would bite the fuck out of em. The other of whom would latch on
like he’d never get another meal... all while turning his head away from my body taking that nipple with him. I didn’t know a human nipple could elongate like that! So yeah, they even liked surprising me.
My boobs and I had a very nice, very long relationship. They were my best body part. Until they weren’t.
It was a difficult night when I had to tell them that they were getting cut off. My breast cancer diagnosis was a month earlier and the double mastectomy was the next morning. I spent a good amount of time that evening looking at them and thanking them for their service and friendship. And for helping my babies grow. I took pictures of them and told them I would never forget them. I knew life wouldn’t be the same, but life was what I needed... so they needed to go.
The surgery was 6 plus hours. I woke up with my sister’s face inches from my eyes telling me I was ok. My husband was telling me the news that my nodes were clear. I was so incredibly groggy but oh so relieved. I then told them what happened at the end of surgery. I said that after they amputated my boobs,the doctors were trying to make baskets with my nipples. I told my sister and husband that both docs had a nipple and took turns aiming toward the surgery trash can and doing their best to score. I think they both made their shots. I was cheering them on of course.
My husband hugged me and told me to go back to sleep.
I woke up hours later in a hospital room.
I had drains where my boobs once were.
I was flat like a fifth grade boy... but I was alive.
Chemo would start in a month along with breast reconstruction. I made it through both.
I’m six years out. I do miss those boobs. They were good to me. They were helpful. At times they had a good sense of humor.
Suleika, as a Lymphoma/BMT survivor, everything you share about your Leukemia “experience” really resonates with me. You have such an amazing way with words; your insight is spot-on, whilst gently nudging me (and countless others) forward- exploring and finding peaceful meaning in our own personal challenges. As a Nurse Practitioner, I never took my health/my body for granted. I would literally thank the universe aloud, for my own strength & wellness, as I left the hospital after my shifts. I thanked my body by treating it, feeding it, moving it the best I knew how. Yet still, cancer snuck in. I felt so betrayed, by my own body turned on me. So angry.
Then came the humbling. The vulnerability was overwhelming; I was ashamed at my neediness, my weakness. It has taken me more than a few yrs. (and lots of therapy, journaling, and learning about radical compassion) to appreciate my body for actually carrying me through some of the hardest things a body can endure. Then, I read Between 2 Kingdoms. I continue to heal in ways I never even knew I needed, or imagined possible. Thank you.
Thankyou. I have a love/hate relationship with my body. However, when I was ilI I realised how much loyalty it had given me over the years. As I recovered I returned to the self criticism! How to let go of this body negativity!? It’s such a pity.
“It’s now that my body is at its most vulnerable, I am seeing its strength.” So beautifully said and felt, Suleika. My son was 4 y/o …25 years ago today…when he was diagnosed with ALL. He’s a survivor and we just presented my memoir (Standing at Water’s Edge) together this week at a local Indie bookseller. He shares his perspective in the book through drawings, dialogue, and writings. Now I’m the one with severely compromised body parts, and the one finding strength in its vulnerability and appreciation through the love of others.
Thank you for this journal prompt and all your offerings…I find myself grateful for being “older” now because I don’t have to worry so much about my bodily imperfections that may have been unacceptable as a younger woman. I can embrace my aging body with a sense of gratitude. I don’t worry about not being thin and smooth enough anymore. My large breasts are no longer the main attraction and I can hide in my larger sized clothes to divert attention from the neck and up. When I was a teenager and through my college years, my breasts were a source of shame for me. Their large size would make me look fat and disproportionate. I wanted to be able to do all the things small breasted women could do without a problem, like run and wear small tops with just a cute bra instead of my mammoth sized DD bras with large straps and underwire. Who wanted that at 14? My breasts made me feel self conscious and acutely aware of how men would notice them and me. I was not ready for all that and it made me very uncomfortable. It took a long time for me to get more comfortable with my breasts. I remember that when I had my first child, they swelled to proportions I did not imagine possible, and it was really difficult to handle. Over the years and into my thirties, my body changed and they were much less prominent. I felt better being able to wear smaller clothes and even enjoyed their sex appeal once in a while. Once I began having regular breast cancer screenings in my late thirties and into my forties, I actually started feeling grateful for my breasts. I began to love them. I really love them now. They look just right on my body. I don’t know if this changed because I began loving myself and accepting my imperfections, or because I have had partners who have helped me overcome my self consciousness. What I do know is that it is a relief not to worry about what other people think of me anymore.
Let’s talk about my lower back. Specifically my 62 year old spine at L3 or L4 or whatever hurts all the time. My back is a metaphor and a physical thing. The metaphor reflects decades of work, renewal, tension, and activity. This spine hikes and this spine had babies. Not to mention driving across country, sitting in meetings, and occasional bits of athleticism.
My spine holds anger, bitterness, and a desire for flight.
Had I listened to my spine in August, my pain in January might be less. Maybe. Because we’re all a little crazed because of the ongoing COVID pandemic. A distant epidemic in the east two years ago is now a worldwide phenomenon of sickness. And my back is a small character on a body aiming to avoid respiratory illness. I had bigger fish to fry when my twitch evolved into muscle weakness.
Bone-tired and ready to scream, I am. Carefully regulated responses are now endangered because I neglected my back. The cure requires physical therapy. The cure means daily stretch. Not to mention new shoes!! Footwear that doesn’t assault L3 and L4. Heels to cushion my daily steps.
I cannot tell you how timely and kismet this last journal session was - I re-read it several times because I was so stunned by its grace and its vulnerability. I've struggled with ED diagnoses, general disordered eating, and body dysmorphia almost all of my life. As I think most journeys with the body go nowadays, it wasn't until these things began to significantly impact my vital organs that I began to question why I was at war with myself, and from what depths the violence came from. When I wasn't in active treatment, my strongest and healthiest coping mechanism over the past fifteen years was fantasy character-forming and writing. At first, it was something I kept incredibly close to my heart out of bashfulness, but the world I created grew over the years, as did my self-awareness and healing, and now I'm on the verge of venturing into publishing with many loved ones cheering me on. The characters and their journeys are all different parts of me (something I didn't even recognize until much farther down the line), and the many moments of catharsis I had while creating their stories was, and will always be, sacred. Even when I reach low points now, I find myself looking to them for encouragement. I feel a little goofy saying that, but your honesty inspired me to do the same. I cannot tell you how validating and exciting it was to read your words, and know that other people are doing the same kind of healing. Thank you so much for everything, for always. Seeing your name in my inbox has always been the brightest light. :) Sending love.
Jan 13, 2022·edited Jan 13, 2022Liked by Suleika Jaouad
I’ve always had food problems. Peanut, wheat and strawberry allergies as a kid; anorexia as a teen; lactose intolerance in college; tried being gluten-free in my 20s when food was just still not comfortable. Finally, in my early 30s, I was at a new low - unable to stop losing weight and utterly out of ideas about what food category was causing all the offense. When your weight is approaching dangerous lows, other things start to go wrong in your body - and your mind. For me, I began to lose the energy to care.
Part of my despair was a disorienting feeling of incredibility. So many strangers would praise my body, so many women would shun me for having a priceless gift, so many of my loved ones would tell me I should really eat more. Everyone had advice, but no one would listen. Really listen. I would have loved to eat more, but the pain, or the fear that I would be in pain shortly thereafter when I was supposed to be in a nice dress for a party, was ever-present. I was always trying to manage, and yet it seemed I was managing nothing.
At my new low I summoned the energy to assert myself with my doctors and get an appointment with a GI specialist. After eight months of testing I was diagnosed with IBS. It’s a term that conjures up gross images, uncomfortable pauses and/or confused pity. I first heard of IBS from the movie “Along Came Polly”, when Ben Stiller has the kind of episode on a date in a restaurant that resembles many anxious sleepers’ recurring nightmares. Through my testing and diagnosis, though, I learned that medicine has only recently invested in the science to understand IBS and support people who have it. Looking over the timeline and considering the interplay of gender and healthcare over the last century, I could easily see how most of my food issues since childhood, and a good share of my self-image, were symptoms of IBS. If only we had had the data, and the words.
During my decline and my early treatment I conjured up a character who I call the Incredible Shrinking Woman. She is the woman inside me who steals the calories that seemingly disappear when I eat. She is the woman who glories in the deceived envy, jealousy and mistaken praise of strangers who only see a magazine cover when I change clothes at the gym. She is the devil who laughs when my loved one yell at me for lying when I say that I’m not trying to lose weight. She is the tiny, elusive elf who holds my dreams of a strong body hostage, knowing what is actually going on. She is in control, and I and the rest of the world are not.
My Incredible Shrinking Woman is teeny-tiny, spindly, garishly made-up and her hair is a little wild, a little too young for her. She is wholly malnourished but she is not beaten down. Instead, Incredible Shrinking Woman reflects the world’s darkest desires for the female form back at it. She transforms my anger, confusion and powerlessness into something wiley and shoots it straight somewhere that it counts. She holds the thing I need in order to be everything she is not - strong, full, whole - but she won't let me have it until I crack some code, some puzzle that I just can't name.
As I began to get a grip on my condition, slowly regenerate my body and altogether get back on my feet, Incredible Shrinking Woman got quiet. But she isn’t gone. She’s been knocking on some doors, pots, pans over the last year of this isolated insanity. I’m curious to see what she might share if I look at her straight, in my healthier body, and give her the floor.
Dear Suleika, I read your book earlier this year, given to me by my therapist who is treating me through post BMT. I was diagnosed with AML last March and I too had my transplant with my one and only, younger brother's stem cells. Chemo prior to transplant and chemo, radiation and the transplant have been a very rough ride for me. I was devastated to learn that the disease was back for you. I could put myself in your position and just was so sad. But from reading your book, I know that you have strong will which leads to all the courage and strength that you somehow manage to dig up from within, to carry you through all the too many bad moments, hours and days. About two months after transplant and no where in the clear of feeling ok, I too had the same sentiment about my body that you are expressing today as the inspiration for this prompt. Our society is hell bent on this "perfect" body type but the perfect body type is the one that carries you through all the things this life throws its way. Whether it is an illness of some sort or just the day to day grind, or physical activities that push you to and beyond your limits. We, as a society, should move towards this outlook of our bodies where we stop focusing on the shape, size, appearance of it and celebrate how it endures, compromises, complies with what we ask it to do. Then we will always be grateful for the many days, which lead to days that our body has carried us through so that we can live, love and enjoy the gifts this life has in store for us. Thank you always for sharing with us. I, along with the world, am praying for your smooth, successful journey out of this difficult time. Hoping this time around is a shorter duration for you.
I just want to thank you for helping me to reframe the way I see and relate to my body. I am currently struggling with end stage anorexia nervosa and palliating at home. I spent years starving myself as a means of coping with trauma and other mental health issues and now my body has told me “enough!” Ironically, it is happening at a time when my will to live is so strong so I am praying for a miracle and reading your memoir and these newsletters is one of my main motivating tools for keeping my head focusing on a hopeful, healthy future for myself.
I feel so blessed to have found you and I really hope that you heal up soon and don’t have to suffer too much longer. You bring so much hope and joy and inspiration to me Suleika and one of my future dreams is to come meet you in person at a book signing because of how much your words and story have changed my whole outlook on life and my relationship to my body.
Thank you thank you a million times thank you 🙏
Making Baskets With Nipples
———-
I was always a boobs girl.
For mine.
As soon as they started growing, I grew fond of them. Not too big, not too tiny. Always a consistent reminder when the air was cold. Always a willing participant as I got older and decided to flash someone like a good guy friend in college drunk across the bar... or my husband years later on an important business call. My boobs enjoyed surprising a few people and making them laugh.
And they had a maternal instinct too. They were very willing to nurture and breast feed two babies, one of whom would bite the fuck out of em. The other of whom would latch on
like he’d never get another meal... all while turning his head away from my body taking that nipple with him. I didn’t know a human nipple could elongate like that! So yeah, they even liked surprising me.
My boobs and I had a very nice, very long relationship. They were my best body part. Until they weren’t.
It was a difficult night when I had to tell them that they were getting cut off. My breast cancer diagnosis was a month earlier and the double mastectomy was the next morning. I spent a good amount of time that evening looking at them and thanking them for their service and friendship. And for helping my babies grow. I took pictures of them and told them I would never forget them. I knew life wouldn’t be the same, but life was what I needed... so they needed to go.
The surgery was 6 plus hours. I woke up with my sister’s face inches from my eyes telling me I was ok. My husband was telling me the news that my nodes were clear. I was so incredibly groggy but oh so relieved. I then told them what happened at the end of surgery. I said that after they amputated my boobs,the doctors were trying to make baskets with my nipples. I told my sister and husband that both docs had a nipple and took turns aiming toward the surgery trash can and doing their best to score. I think they both made their shots. I was cheering them on of course.
My husband hugged me and told me to go back to sleep.
I woke up hours later in a hospital room.
I had drains where my boobs once were.
I was flat like a fifth grade boy... but I was alive.
Chemo would start in a month along with breast reconstruction. I made it through both.
I’m six years out. I do miss those boobs. They were good to me. They were helpful. At times they had a good sense of humor.
But here I am.
Suleika, as a Lymphoma/BMT survivor, everything you share about your Leukemia “experience” really resonates with me. You have such an amazing way with words; your insight is spot-on, whilst gently nudging me (and countless others) forward- exploring and finding peaceful meaning in our own personal challenges. As a Nurse Practitioner, I never took my health/my body for granted. I would literally thank the universe aloud, for my own strength & wellness, as I left the hospital after my shifts. I thanked my body by treating it, feeding it, moving it the best I knew how. Yet still, cancer snuck in. I felt so betrayed, by my own body turned on me. So angry.
Then came the humbling. The vulnerability was overwhelming; I was ashamed at my neediness, my weakness. It has taken me more than a few yrs. (and lots of therapy, journaling, and learning about radical compassion) to appreciate my body for actually carrying me through some of the hardest things a body can endure. Then, I read Between 2 Kingdoms. I continue to heal in ways I never even knew I needed, or imagined possible. Thank you.
I’m in this with you, girl. You got this❤️
Thankyou. I have a love/hate relationship with my body. However, when I was ilI I realised how much loyalty it had given me over the years. As I recovered I returned to the self criticism! How to let go of this body negativity!? It’s such a pity.
“It’s now that my body is at its most vulnerable, I am seeing its strength.” So beautifully said and felt, Suleika. My son was 4 y/o …25 years ago today…when he was diagnosed with ALL. He’s a survivor and we just presented my memoir (Standing at Water’s Edge) together this week at a local Indie bookseller. He shares his perspective in the book through drawings, dialogue, and writings. Now I’m the one with severely compromised body parts, and the one finding strength in its vulnerability and appreciation through the love of others.
Thank you for this journal prompt and all your offerings…I find myself grateful for being “older” now because I don’t have to worry so much about my bodily imperfections that may have been unacceptable as a younger woman. I can embrace my aging body with a sense of gratitude. I don’t worry about not being thin and smooth enough anymore. My large breasts are no longer the main attraction and I can hide in my larger sized clothes to divert attention from the neck and up. When I was a teenager and through my college years, my breasts were a source of shame for me. Their large size would make me look fat and disproportionate. I wanted to be able to do all the things small breasted women could do without a problem, like run and wear small tops with just a cute bra instead of my mammoth sized DD bras with large straps and underwire. Who wanted that at 14? My breasts made me feel self conscious and acutely aware of how men would notice them and me. I was not ready for all that and it made me very uncomfortable. It took a long time for me to get more comfortable with my breasts. I remember that when I had my first child, they swelled to proportions I did not imagine possible, and it was really difficult to handle. Over the years and into my thirties, my body changed and they were much less prominent. I felt better being able to wear smaller clothes and even enjoyed their sex appeal once in a while. Once I began having regular breast cancer screenings in my late thirties and into my forties, I actually started feeling grateful for my breasts. I began to love them. I really love them now. They look just right on my body. I don’t know if this changed because I began loving myself and accepting my imperfections, or because I have had partners who have helped me overcome my self consciousness. What I do know is that it is a relief not to worry about what other people think of me anymore.
Let’s talk about my lower back. Specifically my 62 year old spine at L3 or L4 or whatever hurts all the time. My back is a metaphor and a physical thing. The metaphor reflects decades of work, renewal, tension, and activity. This spine hikes and this spine had babies. Not to mention driving across country, sitting in meetings, and occasional bits of athleticism.
My spine holds anger, bitterness, and a desire for flight.
Had I listened to my spine in August, my pain in January might be less. Maybe. Because we’re all a little crazed because of the ongoing COVID pandemic. A distant epidemic in the east two years ago is now a worldwide phenomenon of sickness. And my back is a small character on a body aiming to avoid respiratory illness. I had bigger fish to fry when my twitch evolved into muscle weakness.
Bone-tired and ready to scream, I am. Carefully regulated responses are now endangered because I neglected my back. The cure requires physical therapy. The cure means daily stretch. Not to mention new shoes!! Footwear that doesn’t assault L3 and L4. Heels to cushion my daily steps.
Each literal step lifts my mood.
Suleika and Natasha,
I cannot tell you how timely and kismet this last journal session was - I re-read it several times because I was so stunned by its grace and its vulnerability. I've struggled with ED diagnoses, general disordered eating, and body dysmorphia almost all of my life. As I think most journeys with the body go nowadays, it wasn't until these things began to significantly impact my vital organs that I began to question why I was at war with myself, and from what depths the violence came from. When I wasn't in active treatment, my strongest and healthiest coping mechanism over the past fifteen years was fantasy character-forming and writing. At first, it was something I kept incredibly close to my heart out of bashfulness, but the world I created grew over the years, as did my self-awareness and healing, and now I'm on the verge of venturing into publishing with many loved ones cheering me on. The characters and their journeys are all different parts of me (something I didn't even recognize until much farther down the line), and the many moments of catharsis I had while creating their stories was, and will always be, sacred. Even when I reach low points now, I find myself looking to them for encouragement. I feel a little goofy saying that, but your honesty inspired me to do the same. I cannot tell you how validating and exciting it was to read your words, and know that other people are doing the same kind of healing. Thank you so much for everything, for always. Seeing your name in my inbox has always been the brightest light. :) Sending love.
I’ve always had food problems. Peanut, wheat and strawberry allergies as a kid; anorexia as a teen; lactose intolerance in college; tried being gluten-free in my 20s when food was just still not comfortable. Finally, in my early 30s, I was at a new low - unable to stop losing weight and utterly out of ideas about what food category was causing all the offense. When your weight is approaching dangerous lows, other things start to go wrong in your body - and your mind. For me, I began to lose the energy to care.
Part of my despair was a disorienting feeling of incredibility. So many strangers would praise my body, so many women would shun me for having a priceless gift, so many of my loved ones would tell me I should really eat more. Everyone had advice, but no one would listen. Really listen. I would have loved to eat more, but the pain, or the fear that I would be in pain shortly thereafter when I was supposed to be in a nice dress for a party, was ever-present. I was always trying to manage, and yet it seemed I was managing nothing.
At my new low I summoned the energy to assert myself with my doctors and get an appointment with a GI specialist. After eight months of testing I was diagnosed with IBS. It’s a term that conjures up gross images, uncomfortable pauses and/or confused pity. I first heard of IBS from the movie “Along Came Polly”, when Ben Stiller has the kind of episode on a date in a restaurant that resembles many anxious sleepers’ recurring nightmares. Through my testing and diagnosis, though, I learned that medicine has only recently invested in the science to understand IBS and support people who have it. Looking over the timeline and considering the interplay of gender and healthcare over the last century, I could easily see how most of my food issues since childhood, and a good share of my self-image, were symptoms of IBS. If only we had had the data, and the words.
During my decline and my early treatment I conjured up a character who I call the Incredible Shrinking Woman. She is the woman inside me who steals the calories that seemingly disappear when I eat. She is the woman who glories in the deceived envy, jealousy and mistaken praise of strangers who only see a magazine cover when I change clothes at the gym. She is the devil who laughs when my loved one yell at me for lying when I say that I’m not trying to lose weight. She is the tiny, elusive elf who holds my dreams of a strong body hostage, knowing what is actually going on. She is in control, and I and the rest of the world are not.
My Incredible Shrinking Woman is teeny-tiny, spindly, garishly made-up and her hair is a little wild, a little too young for her. She is wholly malnourished but she is not beaten down. Instead, Incredible Shrinking Woman reflects the world’s darkest desires for the female form back at it. She transforms my anger, confusion and powerlessness into something wiley and shoots it straight somewhere that it counts. She holds the thing I need in order to be everything she is not - strong, full, whole - but she won't let me have it until I crack some code, some puzzle that I just can't name.
As I began to get a grip on my condition, slowly regenerate my body and altogether get back on my feet, Incredible Shrinking Woman got quiet. But she isn’t gone. She’s been knocking on some doors, pots, pans over the last year of this isolated insanity. I’m curious to see what she might share if I look at her straight, in my healthier body, and give her the floor.