I am a registered nurse and can only say how much I love and value the many treasured relationships with patients that have nourished my life. One of them was a man who had endured two very significant losses and then developed a cancer that eroded his entire mid-face until it became an open, gaping cavern. He isolated himself in his room out of regard for others and not wanting to frighten others with his appearance. I was only 21 when I started caring for him and I was afraid I wouldn't do right by him, so I summoned compassion and my warm sense of humor and brought him as much love as I could. We had many bright and very real conversations. Just prior to his death, he told me he had fallen in love with me. At the time I didn't know what to do with that very dear expression, but as I grew older and thought of him I felt so deeply honored. I loved him too. If there is a place where our spirits go when they leave our bodies, I hope to meet him again and tell him how much his love meant to me. Wellness is a concept that, in my way of understanding, means that a person finds the way to be their best self within the context of their experiences, happiness or suffering. In the context of your disease, one might consider you to be quite well. I loved reading your book and am grateful for all you've shared. I love this blog and therefore I love you for being real, thoughtful, and well enough to help all of us be well too. I am a young-in-spirit retired nurse at age 69 and my hair has changed from being long, straight and blonde, to thin, wiry, and silver. I miss being able to wash it and go because now it takes a bit of work to style it, even with a simple style. If I wear a beanie in the winter, it is a frightful, electrified mess when I remove it. I wear a hat when I'm out hiking on our beautiful trails here in Colorado, but have a very funny looking case of hat head when I remove it. If I ever lost my hair - and being an older woman puts me at risk for developing a cancer as I age- I would be most embarrassed to show my head because I have a permanent bump on it from where my head hit the windshield in a car accident. I'll have to name it and draw a smiley face or some other object on it to signify how glad I am that I survived that accident. My first husband died at the scene. Like you, when I recovered (mostly) from my injuries, emotional and physical, I left the U.S. for Nepal for an extended trek while my friends climbed Mt. Everest. I did this so-called crazy thing because I needed so much to be in a new, very beautiful place, away from all the well-meaning folks who wanted me to be "me" again and seemed to always be peering into my soul to see if I was really healed and not fooling them when I said I was. I enjoyed that no one knew I was a nurse, a young widow, and just wanted to stop containing my spirit in the box where being a survivor seemed to put me. May you be well, be safe, be loved. I congratulate you for being a good example of what it is like to find wellness within your struggle.
Stunning and wise. How wonderful to choose to leave all the many kindly concerns of ‘How are you? Are you any better?’ for a new place in the world of ‘Nice to meet you, too. One of my dearest friends would enjoy you so much. Like twin peas in a pod.’
Your wonderful words, Christine: …being a good example of what it is like to find wellness within your struggle.
Loss of hair…probably the most if only visible sign of fighting the big C. During my experience I continued to run my business, play soccer when I could and not miss too many beats. My friend hired me to come to her company once a week for a big project. I wore my wig, met with executives and delivered! When my hair got to the point that I didn’t have to wear that hot thing in a Texas summer any longer, I went to the office sporting my short do. As I entered the employee break room to grab a coffee, from across the crowded room, the VP of risk management yells out “whoa it takes a strong confident woman to cut her hair that short. I love it.” Only my friend knew about my C diagnosis. She was giving him the cut it gesture but he continued on. I just busted out laughing…because I fooled them all. Cancer had me but in that moment I didn’t have cancer. I was just a girl with a daring hair cut and it’s one of my favorite c stories.
Thanks for sharing this story about your secret hair-do. I had my own with neighbors who said, "Oh, new cut! What's up?" I didn't want to go into it with just anyone. But great that that you had your pals in the know and you could laugh about it. I think that if I saw someone who always had a head of hair and then she one day has a buzz cut or something really short, I'd assume it wasn't just a fun new haircut. There are so many layers to our hair and our hair stories - layers in both senses. Glad you are here to tell the story! XOX Liz
Hair layers…yes!! Being a non vain person I was surprised how much the loss of it hit me. I always appreciated the knowing warm eyes that occasionally shared their c experience …in the grocery store/just out in the world. 20 years later I’m always wondering should I be those same words of encouragement or just hush. 🤷🏻♀️It’s hard to know but humor kind of lifts me all the time. Here’s to good health and no bad hair days.
Ah vanity, thy name is Woman.” I read that quote in a book of photography paired with quotes back in college in the early 70s when I had not considered my own vanity. Later in life as I grew into myself I was able to acknowledge that I was indeed vain not in an unhealthy obsessive way but in the way that underwrites a desire to present ourself to the world in the best packaging we can muster in each given day. Presentation of one’s self is a primal instinct, connected to mating and perpetuation of species- in essence connected to the primal need for connectedness. Survival and a place to belong.
The assurance that my hair would fall out after the transplant drugs was just another fact that accumulated with all the other new facts of cancer and bone marrow transplant. I found myself grateful for a “nicely shaped head”- the only compliment folks can come up with in the absence of hair, better yet was “ you look bad-ass” . On day 100 my hair follicles heard the Ding-time to grow bell, little hairs sprouted and I watched the progress diligently. You can in fact watch paint dry but you can’t watch your hair grow. Now, four and a half months post Ding, I am “rocking the pixie” and grateful for “a nicely shaped head”. The new look, new color and style is the outward reflection of the self that has undergone a spiritual and physical journey of major significance. It is currency in the new community to which I never aspired to belong yet found a dimension and fulfillment I would never have gained otherwise.
Thank you for sharing this incredibly eloquent and moving "hair story." I'm glad you're through the treatment and that you are rocking the pixie. A nurse in the radiology dept. -- where I first removed my "cancer hat" -- said, "You're rocking the hair." These are not words one ever expects to hear, but WOW, they are great when they come.... Got my fingers crossed for your good health and your good hair. THank you for participating in this important conversation... #MeMyHairAndI -- <3 Liz
I started writing a short novel about losing my hair and deleted it. The only thing I really feel about my chemo-related hair loss is that the falling out was worse than the being bald. And no one tells you that it hurts, but it hurt me. Physically. My husband is also bald so we shared that trait for a while! Suleika, I am praying so hard for your complete recovery. Thank you for sharing this journey.
Thanks for sharing your hair story -- and for taking a crack at writing it. It is SUCH a personal thing, even without it being tangled up (pun intended) with chemo/cancer. Sounds like you are well again and no longer sharing a hair-do with your husband. :) Glad you are here! XO ~Liz
I was honored and thrilled when Suleika asked me to provide a hair prompt for today! She wrote a wonderful personal essay, "Hair, Interrupted," for my 2015 anthology about why women are so obsessed with their/our hair. Two years after the book came out, I had my own encounter with the 2 C's -- cancer and chemo -- and faced some of the hair issues and mortality issues that Suleika has written and spoken about so movingly. I thought of her wisdom and generosity often while I was going through my own travails. So I'm especially grateful that we've "met again" to talk about hair -- but her own circumstances now fill me with concern and compassion. I'm grateful to her, to Carmen Radley, and to everyone here today who has offered their stories and their appreciation. Love and thanks to the community that Suleika has created here, and of course to her in this difficult period. XO Elizabeth Benedict
Hi Suleika, It is so generous of you to share your experience with us while you are going through it. It brought back memories of going home after my SCT for AML. For me it was a mixture of relief, fear, gratitude and anticipation. It was physically and emotionally grueling. When I read what you write (expressing the experience so perfectly) I think “damn, she is so strong and brave.” It’s just starting to occur to me in a tiny little whisper of a voice in my head that I was strong too. Maybe that’s the whole point. Thank you for giving me a mirror and an opportunity to see myself differently.
My hair comes from my father's side but like my mother I have kept it long for most of my life. My choice has mostly been practical - I needed to make a bun for ballet; I needed some feature to show my femininity; I needed to get it off of my sweating neck in tropical climates. Now, I have been in a multi-year boycott against the pink tax for hair so I go to a female barber once every 18 months and have it cut a little shorter than I like so that there is room to grow in while I maintain my image of being low-maintenance, and quietly hope no one invites me to anything too fancy.
My father has four sisters, one of whom is a carbon copy of me. She wore her hair long for the longest time in my memory, but adopted her sisters' fashion of simple, short backdrop to great artisanal jewelry in her late 30s or early 40s. One of her sisters, an artist, now cuts her hair so short that it's basically the same cut worn by her brother, my father.
My mother has worked hard to maintain her long, blonde hair over the years. She has regular appointments to try out new looks. She spends at least five minutes - no more, but no less - on her head and face each day. She apologizes when the result isn't perfect.
When I look 15 years ahead I see a short, no-nonsense coif. But I don't recognize the woman looking out from it yet. Perhaps I should buy some artisanal jewelry before I turn 40. Perhaps I should try "a look" with my long hair while I can. Today, though, I'll take a shower and get curious about what shape it will dry in all by itself.
THanks for sharing this multi-generational story! I am so curious about all of you and trying to imagine the hair, the jewelry, the ballet, and the tropical climates you've visited or lived in. Thank you so much for taking the time to tell us your story through your hair. It is endlessly fascinating.... XOXO ~ Liz
Thank you Liz - focusing on a specific part of the body opened up so many doors, and as a woman I found a lot of interesting directions for hair. It's so personal, and the question of its relationship to femininity is SO thick and winding. This, and your feedback, gives me some more writing ideas... :) thank you for your observations and comment!
Thanks for your lovely reply. I edited a book of essays in which I asked women to talk about a favorite gift from their mothers, as a way to talk about their relationships with mothers. It was based on a scarf my mother gave me at the end of her life and which I'd become obsessed with. I had a story about our relationship to tell THROUGH the scarf, and I asked about 30 women to do the same. If I had asked them to write about "your relationship with your mother" they would have had a nervous breakdown, right? because it's too broad. But focusing on one gift -- like one body part -- gives the story a beginning, middle and end. Though with hair, well, it's an ongoing story and often out of control and frizzy! But so glad the prompt meant something to you. (PS, FYI: Mother anthology is: What My Mother Gave Me: 31 Women on the Gifts that Mattered Most). Good wishes for the writing & <3 Liz
Thank you Liz - haha, I have been in a thicket of mother-daughter dynamics and have another 12 months to go with some big life events coming up. This book sounds like a wonderful gift - to read, and to share. Thank you for the rec, I can't wait to check it out! Be well :)
I LOVE the idea of a 100-day project and will gladly join in on one of my own. The way you push through such daunting physical challenges and commit to creativity really inspires me. My challenges are more psychological—perhaps biochemical, as I believe I live with low-level depression most of the time. But, your example makes me feel like maybe I, too, can chip away at a project a little bit each day. See how your openness, the way you share yourself, spreads hope?
I'm so glad to hear that you've gone home from the hospital! Continued healing vibes will be sent your way.
I appreciate your mixed feelings about your freedom day from the hospital post transplant. I've had both an auto and an allo SCT. for lymphoma in my case, not leukemia. I especially identified with your notion about on the one hand being happy to get out, but on the other feeling seriously insecure about leaving the 24/7 care. I know the next part will be hard too, but you have an Amazing support network. You'll get there. My allo was 6+ years ago....I'm 70. And am doing fine.. Everyones case is different, and our underlying diseases are different, but i am confident you can do this. And thanks so much for sharing this journey. Your words are inspiring always, and beautiful
My heart goes to you during this time. My daughter has been going through her own big health battle since January. Which has led us to have multiple stays and surgeries since. The segment of this post regarding what you felt about being there is the same way we felt. We've become friends with many of the nurses and various staff which have for my daughter and been there to really help both of us through what has been quite the emotional journey. God speed with many blessings out to you for a full recovery.
Yay to reaching this milestone!!! What a memorable send off. I could picture everything you shared with us just so perfectly. Thank you for sharing this time with us. May those positive memories of your connections with nurses and staff be bits to contribute to your daily healing. With an illness that’s as awful as this one is, transitions, however scary, which many are in this scenario, are one of the ways we can see progress even though we may not always be feeling better. While much of these transitions, like leaving the hospital, taking your own million pills and no more doctors or nurses around can be so terrifying, they are also a sign that there is some progress, some distance between you and this awful disease leaving your body and this time staying away for good.
Please continue to hang on to the little tiny progressions getting you closer toward Day+100. Even if you are dealing with some new and awful thing each day. Just hang on. Hang on Dear Suleika.
PS. Hope you miss Scotty and never have another Scotty around again. :)
Dear Elizabeth,
Thank you for sharing your experience and how you dealt with the loss of your hair. It is important that everyone gets a say so on how they want to deal with that part of the treatment. For many, shaving is not the first option or an option ever. It’s ironic that while dealing with mortality and feeling ill, we are simultaneously having to make decisions about hair. For me, at first, this wasn’t even a thing I was going to deal with. I was so focused on trying to get better. But then, I started to see big clumps of my hair on the pillow and sheets and see clumps of hair wrapped onto the wheels of my IV pole, and I had to make daily decisions of how to deal with something that was coming on faster than I was ready to deal with. Thank you so much for this prompt, and giving us a chance to reflect. May you and your family be well, always.
Thank you for these incredibly kind, generous words and for taking such care in responding. There are so many ways that our concern with our hair can seem frivolous or superficial, but it is such a fundamental part of our identity, never more so than when it's doing something it's not supposed to do: falling out! So we're frightened about our mortality because of the illness and about something that should be much less serious but that turns out to take up a lot of room in our heads--not just ON on our heads.
A breast cancer doctor I know said that some patients are more upset about losing their hair than about having cancer. That wasn't at all how I felt, but the hair thing was much more complicated than I had imagined it would be. And I was so touched when my sister offered to take hers off with me. People rise to all kinds of occasions that they never think they're capable of -- as we see every hour on the news these difficult days, and as we read Suleika's incredible accounts of what she's been through -- and all she does for this community.
First, I have to say how very much I love you, Dearest Suleika, your Mom, Jon and your entire family, and your love and deep embrace for one another!!!
Now about hair: As a now older woman with curly, blonde, (now bleached blonde), hair, who has spent thousands of dollars through the years on gorgeous haircuts and dye jobs, (while my husband is now my pro bono colorist, albeit on a temporary pandemic basis), i have thought a great deal about issues of attachment, impermanence and loss, regarding my hair and all matters of relationships and the heart. I think daily and deeply about my hair, the investment i have in it, the idea of being too attached to it, for after all, isn't loss an inevitable part of life and loving...
loss the other, existential, if you will, side of loving deeply and fully.
and, so, my relationship with my hair: as with all matters of the heart, (some more serious than others)....i live in the land of love, attachment, fear of loss, actual loss, symbolic loss, impermanence, and i always circle back to that which i deeply love and cherish.
And i circle back to you, our Dearest, Always Beautiful, Suleika. Sending you very much love and strength this Sunday March morning.
I could write a book about hair and I’m sure I’m not alone! I think of my mother, my daughter, myself. These are some words I wrote shortly after my daughter Casey’s death.
The Haircut – She asks to cut her hair before it falls out. I watch her. She sits bravely, utterly, still. Fluorescent light floods the room rendering it angular and hard. A white cape obscures her small rounded shoulders and her skin appears luminous. The expression on her face is indecipherable. Chunks of chestnut hair fall soundlessly to the grey linoleum and the perfect shape of her skull emerges. Her hair becomes a dark cap, tight to her head. I see a beautiful soldier, preparing for battle.
grateful that you are out of the hospital. May your strength and resilience continue to allow you to shine and share your wisdom! The world needs it. Be well, my friend! HUGS!
The other day I was noticing a spot on my scalp that pretty much only has baby hairs left where I pull my ponytail back. I stopped and studied it and it made me feel sad as I realized that my physical person is changing due to the betrayals of aging and the fact that my entire life, I have pulled at this spot to get my hair out of the way. Get it out of way .... interesting. My hair is the initial element I prepare to ‘get ready’ when going out. My hair is the thing I want looking on point in a photo. My hair makes me feel feminine. My hair is a defining part of my physical person that now suddenly terrifies me I may be losing. Literally, slipping though my hands. So, I wonder why when it’s just me and my hair, do I want her out of the way? And now this balding spot is her way of communicating to me: you want me gone …fine. Quite an aggressive message, but …received, loud and clear. So, here’s a message back her (my hair): I am sorry that I haven’t been gentler with my approach. I will commit to less hot tools and for not letting you feel the freshness of suds and water as often as you probably need. And finally, no more treating you with an ‘out of the way' attitude. Let your hair down, you’re doing the most, and I think you’re beautiful.
I am a registered nurse and can only say how much I love and value the many treasured relationships with patients that have nourished my life. One of them was a man who had endured two very significant losses and then developed a cancer that eroded his entire mid-face until it became an open, gaping cavern. He isolated himself in his room out of regard for others and not wanting to frighten others with his appearance. I was only 21 when I started caring for him and I was afraid I wouldn't do right by him, so I summoned compassion and my warm sense of humor and brought him as much love as I could. We had many bright and very real conversations. Just prior to his death, he told me he had fallen in love with me. At the time I didn't know what to do with that very dear expression, but as I grew older and thought of him I felt so deeply honored. I loved him too. If there is a place where our spirits go when they leave our bodies, I hope to meet him again and tell him how much his love meant to me. Wellness is a concept that, in my way of understanding, means that a person finds the way to be their best self within the context of their experiences, happiness or suffering. In the context of your disease, one might consider you to be quite well. I loved reading your book and am grateful for all you've shared. I love this blog and therefore I love you for being real, thoughtful, and well enough to help all of us be well too. I am a young-in-spirit retired nurse at age 69 and my hair has changed from being long, straight and blonde, to thin, wiry, and silver. I miss being able to wash it and go because now it takes a bit of work to style it, even with a simple style. If I wear a beanie in the winter, it is a frightful, electrified mess when I remove it. I wear a hat when I'm out hiking on our beautiful trails here in Colorado, but have a very funny looking case of hat head when I remove it. If I ever lost my hair - and being an older woman puts me at risk for developing a cancer as I age- I would be most embarrassed to show my head because I have a permanent bump on it from where my head hit the windshield in a car accident. I'll have to name it and draw a smiley face or some other object on it to signify how glad I am that I survived that accident. My first husband died at the scene. Like you, when I recovered (mostly) from my injuries, emotional and physical, I left the U.S. for Nepal for an extended trek while my friends climbed Mt. Everest. I did this so-called crazy thing because I needed so much to be in a new, very beautiful place, away from all the well-meaning folks who wanted me to be "me" again and seemed to always be peering into my soul to see if I was really healed and not fooling them when I said I was. I enjoyed that no one knew I was a nurse, a young widow, and just wanted to stop containing my spirit in the box where being a survivor seemed to put me. May you be well, be safe, be loved. I congratulate you for being a good example of what it is like to find wellness within your struggle.
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Thank you for sharing, Christine. Your words give me a sense of your loving spirit.
Stunning and wise. How wonderful to choose to leave all the many kindly concerns of ‘How are you? Are you any better?’ for a new place in the world of ‘Nice to meet you, too. One of my dearest friends would enjoy you so much. Like twin peas in a pod.’
Your wonderful words, Christine: …being a good example of what it is like to find wellness within your struggle.
Loss of hair…probably the most if only visible sign of fighting the big C. During my experience I continued to run my business, play soccer when I could and not miss too many beats. My friend hired me to come to her company once a week for a big project. I wore my wig, met with executives and delivered! When my hair got to the point that I didn’t have to wear that hot thing in a Texas summer any longer, I went to the office sporting my short do. As I entered the employee break room to grab a coffee, from across the crowded room, the VP of risk management yells out “whoa it takes a strong confident woman to cut her hair that short. I love it.” Only my friend knew about my C diagnosis. She was giving him the cut it gesture but he continued on. I just busted out laughing…because I fooled them all. Cancer had me but in that moment I didn’t have cancer. I was just a girl with a daring hair cut and it’s one of my favorite c stories.
Thanks for sharing this story about your secret hair-do. I had my own with neighbors who said, "Oh, new cut! What's up?" I didn't want to go into it with just anyone. But great that that you had your pals in the know and you could laugh about it. I think that if I saw someone who always had a head of hair and then she one day has a buzz cut or something really short, I'd assume it wasn't just a fun new haircut. There are so many layers to our hair and our hair stories - layers in both senses. Glad you are here to tell the story! XOX Liz
Hair layers…yes!! Being a non vain person I was surprised how much the loss of it hit me. I always appreciated the knowing warm eyes that occasionally shared their c experience …in the grocery store/just out in the world. 20 years later I’m always wondering should I be those same words of encouragement or just hush. 🤷🏻♀️It’s hard to know but humor kind of lifts me all the time. Here’s to good health and no bad hair days.
Amen: good health and no bad hair days. AND HUMOR!!!!!!!!!!!! <3 XOX Liz
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Ah vanity, thy name is Woman.” I read that quote in a book of photography paired with quotes back in college in the early 70s when I had not considered my own vanity. Later in life as I grew into myself I was able to acknowledge that I was indeed vain not in an unhealthy obsessive way but in the way that underwrites a desire to present ourself to the world in the best packaging we can muster in each given day. Presentation of one’s self is a primal instinct, connected to mating and perpetuation of species- in essence connected to the primal need for connectedness. Survival and a place to belong.
The assurance that my hair would fall out after the transplant drugs was just another fact that accumulated with all the other new facts of cancer and bone marrow transplant. I found myself grateful for a “nicely shaped head”- the only compliment folks can come up with in the absence of hair, better yet was “ you look bad-ass” . On day 100 my hair follicles heard the Ding-time to grow bell, little hairs sprouted and I watched the progress diligently. You can in fact watch paint dry but you can’t watch your hair grow. Now, four and a half months post Ding, I am “rocking the pixie” and grateful for “a nicely shaped head”. The new look, new color and style is the outward reflection of the self that has undergone a spiritual and physical journey of major significance. It is currency in the new community to which I never aspired to belong yet found a dimension and fulfillment I would never have gained otherwise.
Thank you for sharing this incredibly eloquent and moving "hair story." I'm glad you're through the treatment and that you are rocking the pixie. A nurse in the radiology dept. -- where I first removed my "cancer hat" -- said, "You're rocking the hair." These are not words one ever expects to hear, but WOW, they are great when they come.... Got my fingers crossed for your good health and your good hair. THank you for participating in this important conversation... #MeMyHairAndI -- <3 Liz
I started writing a short novel about losing my hair and deleted it. The only thing I really feel about my chemo-related hair loss is that the falling out was worse than the being bald. And no one tells you that it hurts, but it hurt me. Physically. My husband is also bald so we shared that trait for a while! Suleika, I am praying so hard for your complete recovery. Thank you for sharing this journey.
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Yes, my head hurt when it fell out! Tingling and weird pains.
Thanks for sharing your hair story -- and for taking a crack at writing it. It is SUCH a personal thing, even without it being tangled up (pun intended) with chemo/cancer. Sounds like you are well again and no longer sharing a hair-do with your husband. :) Glad you are here! XO ~Liz
I was honored and thrilled when Suleika asked me to provide a hair prompt for today! She wrote a wonderful personal essay, "Hair, Interrupted," for my 2015 anthology about why women are so obsessed with their/our hair. Two years after the book came out, I had my own encounter with the 2 C's -- cancer and chemo -- and faced some of the hair issues and mortality issues that Suleika has written and spoken about so movingly. I thought of her wisdom and generosity often while I was going through my own travails. So I'm especially grateful that we've "met again" to talk about hair -- but her own circumstances now fill me with concern and compassion. I'm grateful to her, to Carmen Radley, and to everyone here today who has offered their stories and their appreciation. Love and thanks to the community that Suleika has created here, and of course to her in this difficult period. XO Elizabeth Benedict
Hi Suleika, It is so generous of you to share your experience with us while you are going through it. It brought back memories of going home after my SCT for AML. For me it was a mixture of relief, fear, gratitude and anticipation. It was physically and emotionally grueling. When I read what you write (expressing the experience so perfectly) I think “damn, she is so strong and brave.” It’s just starting to occur to me in a tiny little whisper of a voice in my head that I was strong too. Maybe that’s the whole point. Thank you for giving me a mirror and an opportunity to see myself differently.
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My hair comes from my father's side but like my mother I have kept it long for most of my life. My choice has mostly been practical - I needed to make a bun for ballet; I needed some feature to show my femininity; I needed to get it off of my sweating neck in tropical climates. Now, I have been in a multi-year boycott against the pink tax for hair so I go to a female barber once every 18 months and have it cut a little shorter than I like so that there is room to grow in while I maintain my image of being low-maintenance, and quietly hope no one invites me to anything too fancy.
My father has four sisters, one of whom is a carbon copy of me. She wore her hair long for the longest time in my memory, but adopted her sisters' fashion of simple, short backdrop to great artisanal jewelry in her late 30s or early 40s. One of her sisters, an artist, now cuts her hair so short that it's basically the same cut worn by her brother, my father.
My mother has worked hard to maintain her long, blonde hair over the years. She has regular appointments to try out new looks. She spends at least five minutes - no more, but no less - on her head and face each day. She apologizes when the result isn't perfect.
When I look 15 years ahead I see a short, no-nonsense coif. But I don't recognize the woman looking out from it yet. Perhaps I should buy some artisanal jewelry before I turn 40. Perhaps I should try "a look" with my long hair while I can. Today, though, I'll take a shower and get curious about what shape it will dry in all by itself.
THanks for sharing this multi-generational story! I am so curious about all of you and trying to imagine the hair, the jewelry, the ballet, and the tropical climates you've visited or lived in. Thank you so much for taking the time to tell us your story through your hair. It is endlessly fascinating.... XOXO ~ Liz
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Thank you Liz - focusing on a specific part of the body opened up so many doors, and as a woman I found a lot of interesting directions for hair. It's so personal, and the question of its relationship to femininity is SO thick and winding. This, and your feedback, gives me some more writing ideas... :) thank you for your observations and comment!
Thanks for your lovely reply. I edited a book of essays in which I asked women to talk about a favorite gift from their mothers, as a way to talk about their relationships with mothers. It was based on a scarf my mother gave me at the end of her life and which I'd become obsessed with. I had a story about our relationship to tell THROUGH the scarf, and I asked about 30 women to do the same. If I had asked them to write about "your relationship with your mother" they would have had a nervous breakdown, right? because it's too broad. But focusing on one gift -- like one body part -- gives the story a beginning, middle and end. Though with hair, well, it's an ongoing story and often out of control and frizzy! But so glad the prompt meant something to you. (PS, FYI: Mother anthology is: What My Mother Gave Me: 31 Women on the Gifts that Mattered Most). Good wishes for the writing & <3 Liz
Thank you Liz - haha, I have been in a thicket of mother-daughter dynamics and have another 12 months to go with some big life events coming up. This book sounds like a wonderful gift - to read, and to share. Thank you for the rec, I can't wait to check it out! Be well :)
I LOVE the idea of a 100-day project and will gladly join in on one of my own. The way you push through such daunting physical challenges and commit to creativity really inspires me. My challenges are more psychological—perhaps biochemical, as I believe I live with low-level depression most of the time. But, your example makes me feel like maybe I, too, can chip away at a project a little bit each day. See how your openness, the way you share yourself, spreads hope?
I'm so glad to hear that you've gone home from the hospital! Continued healing vibes will be sent your way.
Suleika,
I appreciate your mixed feelings about your freedom day from the hospital post transplant. I've had both an auto and an allo SCT. for lymphoma in my case, not leukemia. I especially identified with your notion about on the one hand being happy to get out, but on the other feeling seriously insecure about leaving the 24/7 care. I know the next part will be hard too, but you have an Amazing support network. You'll get there. My allo was 6+ years ago....I'm 70. And am doing fine.. Everyones case is different, and our underlying diseases are different, but i am confident you can do this. And thanks so much for sharing this journey. Your words are inspiring always, and beautiful
My heart goes to you during this time. My daughter has been going through her own big health battle since January. Which has led us to have multiple stays and surgeries since. The segment of this post regarding what you felt about being there is the same way we felt. We've become friends with many of the nurses and various staff which have for my daughter and been there to really help both of us through what has been quite the emotional journey. God speed with many blessings out to you for a full recovery.
Dear Suleika,
Yay to reaching this milestone!!! What a memorable send off. I could picture everything you shared with us just so perfectly. Thank you for sharing this time with us. May those positive memories of your connections with nurses and staff be bits to contribute to your daily healing. With an illness that’s as awful as this one is, transitions, however scary, which many are in this scenario, are one of the ways we can see progress even though we may not always be feeling better. While much of these transitions, like leaving the hospital, taking your own million pills and no more doctors or nurses around can be so terrifying, they are also a sign that there is some progress, some distance between you and this awful disease leaving your body and this time staying away for good.
Please continue to hang on to the little tiny progressions getting you closer toward Day+100. Even if you are dealing with some new and awful thing each day. Just hang on. Hang on Dear Suleika.
PS. Hope you miss Scotty and never have another Scotty around again. :)
Dear Elizabeth,
Thank you for sharing your experience and how you dealt with the loss of your hair. It is important that everyone gets a say so on how they want to deal with that part of the treatment. For many, shaving is not the first option or an option ever. It’s ironic that while dealing with mortality and feeling ill, we are simultaneously having to make decisions about hair. For me, at first, this wasn’t even a thing I was going to deal with. I was so focused on trying to get better. But then, I started to see big clumps of my hair on the pillow and sheets and see clumps of hair wrapped onto the wheels of my IV pole, and I had to make daily decisions of how to deal with something that was coming on faster than I was ready to deal with. Thank you so much for this prompt, and giving us a chance to reflect. May you and your family be well, always.
Dear Pioula,
Thank you for these incredibly kind, generous words and for taking such care in responding. There are so many ways that our concern with our hair can seem frivolous or superficial, but it is such a fundamental part of our identity, never more so than when it's doing something it's not supposed to do: falling out! So we're frightened about our mortality because of the illness and about something that should be much less serious but that turns out to take up a lot of room in our heads--not just ON on our heads.
A breast cancer doctor I know said that some patients are more upset about losing their hair than about having cancer. That wasn't at all how I felt, but the hair thing was much more complicated than I had imagined it would be. And I was so touched when my sister offered to take hers off with me. People rise to all kinds of occasions that they never think they're capable of -- as we see every hour on the news these difficult days, and as we read Suleika's incredible accounts of what she's been through -- and all she does for this community.
Thank you again. ~XOX liz
lovely xo ty
First, I have to say how very much I love you, Dearest Suleika, your Mom, Jon and your entire family, and your love and deep embrace for one another!!!
Now about hair: As a now older woman with curly, blonde, (now bleached blonde), hair, who has spent thousands of dollars through the years on gorgeous haircuts and dye jobs, (while my husband is now my pro bono colorist, albeit on a temporary pandemic basis), i have thought a great deal about issues of attachment, impermanence and loss, regarding my hair and all matters of relationships and the heart. I think daily and deeply about my hair, the investment i have in it, the idea of being too attached to it, for after all, isn't loss an inevitable part of life and loving...
loss the other, existential, if you will, side of loving deeply and fully.
and, so, my relationship with my hair: as with all matters of the heart, (some more serious than others)....i live in the land of love, attachment, fear of loss, actual loss, symbolic loss, impermanence, and i always circle back to that which i deeply love and cherish.
And i circle back to you, our Dearest, Always Beautiful, Suleika. Sending you very much love and strength this Sunday March morning.
I could write a book about hair and I’m sure I’m not alone! I think of my mother, my daughter, myself. These are some words I wrote shortly after my daughter Casey’s death.
The Haircut – She asks to cut her hair before it falls out. I watch her. She sits bravely, utterly, still. Fluorescent light floods the room rendering it angular and hard. A white cape obscures her small rounded shoulders and her skin appears luminous. The expression on her face is indecipherable. Chunks of chestnut hair fall soundlessly to the grey linoleum and the perfect shape of her skull emerges. Her hair becomes a dark cap, tight to her head. I see a beautiful soldier, preparing for battle.
Thank you for sharing this. My heart goes out to you. <3 Liz
❤️
Beautifully written.
❤️thank you
grateful that you are out of the hospital. May your strength and resilience continue to allow you to shine and share your wisdom! The world needs it. Be well, my friend! HUGS!
The other day I was noticing a spot on my scalp that pretty much only has baby hairs left where I pull my ponytail back. I stopped and studied it and it made me feel sad as I realized that my physical person is changing due to the betrayals of aging and the fact that my entire life, I have pulled at this spot to get my hair out of the way. Get it out of way .... interesting. My hair is the initial element I prepare to ‘get ready’ when going out. My hair is the thing I want looking on point in a photo. My hair makes me feel feminine. My hair is a defining part of my physical person that now suddenly terrifies me I may be losing. Literally, slipping though my hands. So, I wonder why when it’s just me and my hair, do I want her out of the way? And now this balding spot is her way of communicating to me: you want me gone …fine. Quite an aggressive message, but …received, loud and clear. So, here’s a message back her (my hair): I am sorry that I haven’t been gentler with my approach. I will commit to less hot tools and for not letting you feel the freshness of suds and water as often as you probably need. And finally, no more treating you with an ‘out of the way' attitude. Let your hair down, you’re doing the most, and I think you’re beautiful.
Fabulous prompt♥️
Thanks so much! I was thrilled that Suleika invited me, and so glad so many people have shared their stories and enthusiasm. ~ Liz