Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
I look forward to your Substack above all others - the superb quality of your writing and always, such shining honesty. I relate to what you've written today but from a different perspective. My parents died in quick succession when I was a teen and I have been impacted my whole life by the sudden realization that anything can happen at any time. I've been a "searcher" ever since, reading widely, meditating erratically, trying to make sense of things (not always a good idea!) and dealing with debilitating random anxiety at times but in the end, it's just as you point out here. We suffer even more by not accepting things as they are. I've always cherished The Small Things, and my experience has certainly made me empathetic and wiser than my years. But sometimes, it's so difficult not to be fearful and overwhelmed as I obviously know you know. Your words are so encouraging.
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
This is one of those "one the one hand" type of questions for me. There are moments I would give anything to never have broken my neck or had two brain surgeries. Many times, it's when I'm watching a movie or a television show and someone does something that came naturally to me during the "before" years...such as riding a bike or running across a street in NYC, dodging traffic, to catch a bus as it pulls away from the curb. In those moments I long for my former, physically-abled self. But when I truly reflect on the life I have lived, not only in spite of, but because of, I'm grateful. Breaking my neck and the subsequent year on opiates gave me the impetus to return to school and fulfill a lifelong dream. The brain surgeries slowed me down long enough to pick back up a truer passion, to become an artist. These experiences also upended my life in a way that revealed what really matters...my own loved ones and humanity in general. I'm much more careful how I "see" and treat people now.
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
You'd never know by looking at me. I look normal. I work my full-time job and we have date night nearly every Friday. We're still pursuing adventure in life, because memories will be the most important thing we take to heaven. Cutaneous lymphoma will most likely not kill me, just annoy the crap out of me with side-effects and treatments and doctor's appointments. So we press on and pursue life with a vengeance. Attributed to Plato (with an addition by Peter Pan author James M Barrie): Be kinder than necessary, because everyone you meet is fighting some kind of battle.
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
I have become the mom in the prompt The Circus. I live in chronic pain due to an autoimmune disease. The pain was very severe for 8 months and I was unable to digest food properly. When people share their problems with me, I struggle to see what the problem is. I think, if you’re not living with severe chronic pain or illness, the world is at your feet: you can enjoy the smell of your coffee, the colors of the flowers and good conversation.
I don’t know what to say other than: I’ve learned to be grateful when the pain subsides.
I live like Suleika in a way, because I’m aware it all can be taken away at any moment. I’ve learned to share my feelings with those I love.
Mar 3·edited Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
It wasn't the house I had hated all those years as I had thought, it was myself I had hated. I gazed out the window, the 70's wood windows supporting my chin, my mother dying, my father sharing a sweet potato chili with me and there was a shift inside me, a deep understanding, a knowing 40 years in the making. We had moved to this house when I was 16, from Frankfurt Germany to Podunk USA. I had inflicted my destain of self, onto this inanimate object, complete with the wood paneling in the basement, floor covered with rust colored shag carpeting. And now, the hate has left me and I will feel the deep miss of this home as Mom will die and Dad will soon after. He is staying alive for her. And I, I will be left to mourn them both and the house I had hated.
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Suleika, what a beautiful reflection on all that you gained, all the hard-earned wisdom, through the immense suffering you endured in your diagnosis. It is truly inspiring!
It does feel strange to say, but after you’ve lived through a hard hard thing, it’s difficult to imagine the person you would be without it. My husband and I experienced 7 years of infertility, lost two babies to miscarriage, and had one failed adoption in that time. It was a time of deep suffering.
And yet I would not take away that time—as I sit here now 16 weeks pregnant with our miracle baby, I can look back in gratitude on the way these 7 years of suffering grew me into a more compassionate and empathetic person, inspired me to serve others dealing with infertility and loss, and most especially grew my faith in God and strengthened my marriage in ways I could not have foreseen.
Suffering is a mystery but if we let it, it grows us into better truer versions of ourselves. ❤️
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Thank you for the interview last week with The Real Susan Cain, Suleika. I feel very grounded when I hear these kinds of conversations. I love the deep dive into the wounds and the healing. The cuts that make us whole.
I loved, also, Lia Romeo’s story. So beautifully written. So honest and so vulnerable. The bubbles just made me smile all over the place! Brilliant and poignant.
Last week, after an absence of seven years, years of almost zero contact of any kind, I spent time with my daughter. As we talked and cried, sharing the hurts we had carried all these many years and offering each other forgiveness, I thought: If this is what it took, seven years of a broken heart and a body traumatized by it, then, thank you. I’ll take it. It was worth it. For this one moment.
For my daughter was lost. And now she’s found. What was broken is being made new. Will the journey continue? Will my daughter continue to freely choose me? I do not know. What I know is that when I held my daughter in my arms, there was only room for love between us.
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Both of these beautiful meditations felt like I was breathing my own thoughts from here inside this new landscape where everything is changed. Suleika, your beautiful phrase “has given me a jeweler’s eye” is the most poetic expression I’ve read of how cancer teaches us to see. Bless you both. I’m holding you deeply in my prayers. Xox
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
I live in an intentional community in which a British man with asperger's also lives. He only wears Scottish clothing from the 18th century - lots of plaid wool fabric draped around his body - but has been having angry outbursts lately and I was thinking that maybe he should leave the community. Then, another member said to me, "where else in the world could he live with such support and affection?" I realized then how important it is for us to do the work of love, of helping him learn to work with his anger in skillful ways - and I learned something about opening my heart.
When my husband died suddenly and I was lost in grief, something I had once heard kept me (barely) afloat: someone who has won the lottery, it seems, and someone who has lost a limb have an equal chance at feeling happy with their lives five years after the event. It seemed worth keeping on, if only to see how my life might feel five years down the road. My after-note is that it felt, at core, pretty wonderful. It was sometimes ragged, sometimes glorious, and often peaceful. The pain of grief was excruciating, but the growth it offered would not have happened without that pain. Nearly nine years later now, I still miss my husband, but I'm grateful beyond words for the ever-unfolding opportunity I've had to find myself during that time, alone.
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Beautifully written Lia Romeo and Suleika. Peace, honor, and blessings to you both for sharing of yourselves.
In re: the prompt and shift in perspective: almost immediately after marital separation and starting a divorce process, I realized we had to get along better in divorce than we had been able to in our marriage! I told myself we now have to achieve in divorce what we (unfortunately) could not achieve in marriage! Who knew! It was a long process. We took our time and did not push. The divorce was finalized with both of us intact, parent child relationships intact. Would I have consciously chosen divorce as a means to this achievement? No way. And yet the “how” on this process lives in my short list of meaningful achievements so far.
Mar 3Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
I had to come up with a word for “non-cancer people” (even the doctors), sort of like NoMaj or muggles. That distinction has helped me to cope with the things that can be said. Gives me more room for a “bless your heart”. Thinking about having cancer as some sort of super power that opens up other portals (to yourself) is a necessary perspective for my survival. I think that’s what it is, you (the universal one) has to find a way to survive.
Everywhere I go I’m surrounded by parents with typical children, women whose 12 year old daughters are going to the movies together, finding best friends, starting to discover who their unique gifts . We’ve searched high and low for schools, communities and friendships that are open to seeing my daughter’s unique gifts. Parents who have typical children can’t fathom how it feels to sit with the idea that your child might not read, might never have a romantic relationship or even a good friend, might never find the right set of exceptional people and circumstances where she can thrive. Sometimes it feels like no matter where you go you’re stuck in a place you don’t belong. I’ve realized, though, that even the pangs of grief can bring us to something at the core of being human. Somehow these experiences unite us with others who have gone through the same things throughout history, even though it was a different time, place and circumstance. There is something beautiful in all of this.
I work in an emergency room and I recently wrote this piece about being mortal:
I was put on this earth for a finite time
Every day I am reminded that today could be my last
I see people who leave their houses in the morning not knowing that they will never return
Calamities and diseases can strike at any moment.
I have witnessed lives being snuffed out in the blink of an eye
I learned to cherish every day
I appreciate my loved ones and let them know that I am grateful for them
I refuse to leave my house in anger, bitterness or with something important left unsaid
I do not allow myself to get caught up in petty annoyances.
I cling to beauty wherever I can find it.
I look forward to your Substack above all others - the superb quality of your writing and always, such shining honesty. I relate to what you've written today but from a different perspective. My parents died in quick succession when I was a teen and I have been impacted my whole life by the sudden realization that anything can happen at any time. I've been a "searcher" ever since, reading widely, meditating erratically, trying to make sense of things (not always a good idea!) and dealing with debilitating random anxiety at times but in the end, it's just as you point out here. We suffer even more by not accepting things as they are. I've always cherished The Small Things, and my experience has certainly made me empathetic and wiser than my years. But sometimes, it's so difficult not to be fearful and overwhelmed as I obviously know you know. Your words are so encouraging.
Thanks so much for sharing from your heart.
This is one of those "one the one hand" type of questions for me. There are moments I would give anything to never have broken my neck or had two brain surgeries. Many times, it's when I'm watching a movie or a television show and someone does something that came naturally to me during the "before" years...such as riding a bike or running across a street in NYC, dodging traffic, to catch a bus as it pulls away from the curb. In those moments I long for my former, physically-abled self. But when I truly reflect on the life I have lived, not only in spite of, but because of, I'm grateful. Breaking my neck and the subsequent year on opiates gave me the impetus to return to school and fulfill a lifelong dream. The brain surgeries slowed me down long enough to pick back up a truer passion, to become an artist. These experiences also upended my life in a way that revealed what really matters...my own loved ones and humanity in general. I'm much more careful how I "see" and treat people now.
You'd never know by looking at me. I look normal. I work my full-time job and we have date night nearly every Friday. We're still pursuing adventure in life, because memories will be the most important thing we take to heaven. Cutaneous lymphoma will most likely not kill me, just annoy the crap out of me with side-effects and treatments and doctor's appointments. So we press on and pursue life with a vengeance. Attributed to Plato (with an addition by Peter Pan author James M Barrie): Be kinder than necessary, because everyone you meet is fighting some kind of battle.
I have become the mom in the prompt The Circus. I live in chronic pain due to an autoimmune disease. The pain was very severe for 8 months and I was unable to digest food properly. When people share their problems with me, I struggle to see what the problem is. I think, if you’re not living with severe chronic pain or illness, the world is at your feet: you can enjoy the smell of your coffee, the colors of the flowers and good conversation.
I don’t know what to say other than: I’ve learned to be grateful when the pain subsides.
I live like Suleika in a way, because I’m aware it all can be taken away at any moment. I’ve learned to share my feelings with those I love.
It wasn't the house I had hated all those years as I had thought, it was myself I had hated. I gazed out the window, the 70's wood windows supporting my chin, my mother dying, my father sharing a sweet potato chili with me and there was a shift inside me, a deep understanding, a knowing 40 years in the making. We had moved to this house when I was 16, from Frankfurt Germany to Podunk USA. I had inflicted my destain of self, onto this inanimate object, complete with the wood paneling in the basement, floor covered with rust colored shag carpeting. And now, the hate has left me and I will feel the deep miss of this home as Mom will die and Dad will soon after. He is staying alive for her. And I, I will be left to mourn them both and the house I had hated.
Suleika, what a beautiful reflection on all that you gained, all the hard-earned wisdom, through the immense suffering you endured in your diagnosis. It is truly inspiring!
It does feel strange to say, but after you’ve lived through a hard hard thing, it’s difficult to imagine the person you would be without it. My husband and I experienced 7 years of infertility, lost two babies to miscarriage, and had one failed adoption in that time. It was a time of deep suffering.
And yet I would not take away that time—as I sit here now 16 weeks pregnant with our miracle baby, I can look back in gratitude on the way these 7 years of suffering grew me into a more compassionate and empathetic person, inspired me to serve others dealing with infertility and loss, and most especially grew my faith in God and strengthened my marriage in ways I could not have foreseen.
Suffering is a mystery but if we let it, it grows us into better truer versions of ourselves. ❤️
Thank you for the interview last week with The Real Susan Cain, Suleika. I feel very grounded when I hear these kinds of conversations. I love the deep dive into the wounds and the healing. The cuts that make us whole.
I loved, also, Lia Romeo’s story. So beautifully written. So honest and so vulnerable. The bubbles just made me smile all over the place! Brilliant and poignant.
Last week, after an absence of seven years, years of almost zero contact of any kind, I spent time with my daughter. As we talked and cried, sharing the hurts we had carried all these many years and offering each other forgiveness, I thought: If this is what it took, seven years of a broken heart and a body traumatized by it, then, thank you. I’ll take it. It was worth it. For this one moment.
For my daughter was lost. And now she’s found. What was broken is being made new. Will the journey continue? Will my daughter continue to freely choose me? I do not know. What I know is that when I held my daughter in my arms, there was only room for love between us.
I will cherish this moment of Heaven forever.
Love,
Jacqueline
Both of these beautiful meditations felt like I was breathing my own thoughts from here inside this new landscape where everything is changed. Suleika, your beautiful phrase “has given me a jeweler’s eye” is the most poetic expression I’ve read of how cancer teaches us to see. Bless you both. I’m holding you deeply in my prayers. Xox
I live in an intentional community in which a British man with asperger's also lives. He only wears Scottish clothing from the 18th century - lots of plaid wool fabric draped around his body - but has been having angry outbursts lately and I was thinking that maybe he should leave the community. Then, another member said to me, "where else in the world could he live with such support and affection?" I realized then how important it is for us to do the work of love, of helping him learn to work with his anger in skillful ways - and I learned something about opening my heart.
When my husband died suddenly and I was lost in grief, something I had once heard kept me (barely) afloat: someone who has won the lottery, it seems, and someone who has lost a limb have an equal chance at feeling happy with their lives five years after the event. It seemed worth keeping on, if only to see how my life might feel five years down the road. My after-note is that it felt, at core, pretty wonderful. It was sometimes ragged, sometimes glorious, and often peaceful. The pain of grief was excruciating, but the growth it offered would not have happened without that pain. Nearly nine years later now, I still miss my husband, but I'm grateful beyond words for the ever-unfolding opportunity I've had to find myself during that time, alone.
Beautifully written Lia Romeo and Suleika. Peace, honor, and blessings to you both for sharing of yourselves.
In re: the prompt and shift in perspective: almost immediately after marital separation and starting a divorce process, I realized we had to get along better in divorce than we had been able to in our marriage! I told myself we now have to achieve in divorce what we (unfortunately) could not achieve in marriage! Who knew! It was a long process. We took our time and did not push. The divorce was finalized with both of us intact, parent child relationships intact. Would I have consciously chosen divorce as a means to this achievement? No way. And yet the “how” on this process lives in my short list of meaningful achievements so far.
I had to come up with a word for “non-cancer people” (even the doctors), sort of like NoMaj or muggles. That distinction has helped me to cope with the things that can be said. Gives me more room for a “bless your heart”. Thinking about having cancer as some sort of super power that opens up other portals (to yourself) is a necessary perspective for my survival. I think that’s what it is, you (the universal one) has to find a way to survive.
Life’s lessons. I have struggled to learn them. You are an inspiration. Quite a slice of brave❤️
Everywhere I go I’m surrounded by parents with typical children, women whose 12 year old daughters are going to the movies together, finding best friends, starting to discover who their unique gifts . We’ve searched high and low for schools, communities and friendships that are open to seeing my daughter’s unique gifts. Parents who have typical children can’t fathom how it feels to sit with the idea that your child might not read, might never have a romantic relationship or even a good friend, might never find the right set of exceptional people and circumstances where she can thrive. Sometimes it feels like no matter where you go you’re stuck in a place you don’t belong. I’ve realized, though, that even the pangs of grief can bring us to something at the core of being human. Somehow these experiences unite us with others who have gone through the same things throughout history, even though it was a different time, place and circumstance. There is something beautiful in all of this.
“It taught me all my most important lessons—about acceptance, about presence, about love—that I would never wish to unknow.” ❤️