Such a gorgeous conversation, and so very wise. Also very powerful to hear this chorus of voices saying, “Yes, THIS” or “Yes, THAT” or “My situation isn’t exactly the same, but these words still resonate.” What a gift you’ve given, dear Anne and Suleika, and what a gift this community gives in return ❤️
Mar 10, 2022Liked by Suleika Jaouad, Carmen Radley
After battling both Covid and breast cancer in 2020, last summer my darling husband and I moved in with my elderly parents to get more caregiving support as I continue to be debilitated by long Covid.
The mutual gifts of this experience are countless, one of the most surprising being the renewed sense of purpose it has given my parents to be able to care for and help support us. It is writing a new chapter in their lives that no one saw coming.
I also often wonder how painful it must be for them, and for my husband, to see my life so derailed, to see me struggle daily to try to regain it. Your conversation will help me explore this with them.
Thank you as always for your brave and giving heart. 💛
Mar 10, 2022Liked by Suleika Jaouad, Carmen Radley
What mirror do we give to a sick person? This question is so helpful to ponder. As a caregiver to 3 elderly parents I have struggled with this. Am I being too upbeat? Am I truly hearing how they want to embrace or deny the implications of their illness. Each day is different and I think being open and flexible in my response (mirror image) is one if the hardest pars of the journey. These are adults and although I am now their caregiver they are not my children and have to be treated differently. Thank you so much for this dialogue and providing a new lense to look through.
Mar 10, 2022Liked by Suleika Jaouad, Carmen Radley
Every time I get an email in my inbox from the isolation journals I drop everything I’m doing. I quiet my mind into a space where I can absorb every word like a sponge.
There’s so much wisdom in everything you say.
It’s a wonderful thing to witness such a loving and respectful relationship between you and your mom. Such honesty.
I’m so glad to hear that this time around everything is a little easier for all of you.
Sending lots of light and love in your direction, Suleika and Anne!
Dana, it is the same for me! I relish these journal entries from Sulieka. It is uncanny how each one seems so right in step with some aspect of my own life!
Mar 10, 2022Liked by Carmen Radley, Suleika Jaouad
Let’s start by saying the treatments haven’t tarnished your extraordinary ability to write and connect with others!!
You are incredibly blessed with touching others with your words.
I so appreciate your mother’s perspective and thoughts. It’s encouraging to hear her views from the front line and to think about her reflections on then and now. I bet she never wanted a repeat performance, but this hospitalization and treatment shows an experienced, confident mother supporting you as needed, yet realizing she needs to keep herself energized and composed.
I’m thankful you both have shared these words and experiences.
Mar 10, 2022Liked by Carmen Radley, Suleika Jaouad
"It was so painful to see you so upset, and really heartbreaking because it changed things for you. You were trying so hard to be a normal young person, and it was the moment you understood you couldn’t be." So beautifully said, Anne. As an oncology nurse and mother of a childhood ALL survivor, I feel both of your heartbreak as well as your determination to be present for each other, while respecting and encouraging independence. Such a beautiful dance you share. In my memoir, I share my struggle to let go of the responsibility for keeping my teen-age son survivor safe. Afterall, I was the cancer nurse who knew what he should be doing for his body. But he taught me that we need to live from our heart as well as our head. Blessings to you both in these precious moments you share.
Mar 10, 2022·edited Mar 13, 2022Liked by Carmen Radley, Suleika Jaouad
Oh Suleika once again you have nailed it for us. I have two sons with wives whom I've come to love as my own. So far cancer has stayed clear of this little family cohort but my daughter-in-law and I have shared a similar spinal cord issue that has very nearly killed us both over the past eight years. The big difference between us is that I am now 70 and she is 39. Her drive to resume every aspect of her life from insane fitness routines to a draining, stressful but highly meaningful career scare me so much for her. We have talks where I try as gently and non-intrusively as possible to slow her down. Other times I scream out in my fear, “What the fuck, Sara!” When reading your book (3 X now), I often find myself reading it from the perspective of a mother of adult children. It is sooooo hard to be us at times. Well done, Anne. You have raised an amazing daughter. What I have finally understood about my beloved Sara is that she is 39 and I am 70. We bring different energy levels, different stamina and different aspirations to our situations. I will always support her and most importantly my son who is her husband and primary caregiver but I have learned at the same time that I must honour my own life, my own marriage and my own distinctly different aspirations I have for the years I will yet be given. Sara and I developed this enormous kinship not just because she married my son and before her illness gave me a beloved grandaughter but because we had so much in common careerwise. In terms of our diagnoses we were the only people we knew who understood what spinal cord deterioration and that kind of nerve pain and the drugs being pushed at us ...well, what that felt like and how we could make best decisions for our own healthcare. Unfortunately what our intense closeness caused for me over time was an emotional estrangement from my son, her husband and primary caregiver. He came to feel that I was only there for Sara and had no idea the burdens and challenges he was dealing with. Sara had me and her own mother and sister and friends. There was no one like that there for him. Fortunately, and I do not recollect how this came about but we decided to see a therapist together. Over 3 or 4 sessions (at $300 per hour so we’d get down to business fast) I learned how desperately this 40 year old man needed his mother in his corner too. He learned what my illness had done to me and how empty my own bucket was both physically and emotionally. Understanding these things about each other changed everything for us. Sara already has a most excellent mother. She does not need any mothering from me. We share specific intelligence about our health but she already has the mothering covered elsewhere. I refocused my energy on making MYSELF well and rebuilding my relationship with my son. His version of me was still the Superwoman of his childhood. Now he came to understand how fragile I had become, how PTSD and multiple regimes of drug infusions then opioid withdrawals had drained me. Nonetheless I was now able to give him the understanding that I would ALWAYS be in HIS corner FIRST. We don’t need to be 70 year old superwoman marathon runners to meet our adult children's needs. A voice at the end of a telephone line can do it. Thankyou Suleika and Anne. God bless you for the conversations and understanding you are facilitating.
Mar 10, 2022Liked by Suleika Jaouad, Carmen Radley
I am a lucky one who is cancer free. But I have so many friends in various stages of cancer so your clear and honest writing helps me know how to be a better friend and support. Particularly your gift today about what are we mirroring. I have to deal with my own fears and discomfort so I can really be there with my friends. Thank you for continuing to give your gifts to us all through your hardest times. I am truly grateful.
Mar 10, 2022Liked by Suleika Jaouad, Carmen Radley
Between 2002 and 2010, as an oncology nurse, I had this realization about how the caregiver role is the most difficult and now that I am a recent breast cancer survivor myself, I can see how much it is true from another perspective.
Our loved ones can only imagine what our reality is and their human nature bumps up the perceived intensity. It’s the reason Alfred Hitchcock never needed to show any actual blood and gore in his motion pictures - he knew that his audience would create in their minds eye something more gruesome than he would have been able to portray on film.
I am very fortunate to have both my now-82 year old mother and my now-29 year old daughter in my life. Their support has been amazing. I am grateful every day for their efforts to support me as I heal from my treatments.
Sending you and your dear mother much love, Suleika. ❤️
Love this insight about how we imagine the worst--how it wasn’t necessary for Hitchcock to add the gore, because he knew our minds would go to the worst. Seems very true.
Mar 10, 2022Liked by Suleika Jaouad, Carmen Radley
I appreciate both of your candor and love. In 1997 when I had breast cancer (age 41), my mother went to one support group for parents. She said that she too needed support. One of the best coping mechanisms for caretakers, 'take care of yourself,' and then be there for your family or friend.
Mar 10, 2022Liked by Carmen Radley, Suleika Jaouad
That was a wonderful piece. Thank you so much for sharing this. All of the things you shared resonate with all mothers letting their adult children go. It is a difficult world out here and it is hard to see your child struggling. Thank you for the idea of good worries.
Oh, Suleika and Anne, how this spoke to me. The startling adjustment and courage necessary to find a whole new Suleika, the strength infused through caregiving and the bravery and honor of letting go for Anne. Twelve years ago yesterday we lost our almost 20 year old Casey after a long battle with ALL. None of us will ever be the same, we are grieving still, we are more powerful than ever, we send and receive love in a different but beautiful way. Casey was brave beyond words, insisted on living, traveled the world, broke her wrist snowboarding, all while in some phase of treatment. There was no stopping her. One of her last pieces of advice to me was “mom, you must keep going.”
I had the honor and gift of speaking to Thich Nhat Hanh at a retreat after Casey’s death. I shared that I felt Casey in every cell of my body but still wondered, would I ever be really happy? He looked into my eyes and said that if I was able to look deeply at the flowers, the tree, the tea in my cup, I would see Casey, I would see her everywhere, I would have many daughters. And he smiled. So sweet, so warm, so comforting. Many years ago I was given a dharma name by Thay, Awakening Smile of the Heart. I try to embody that name. I try to live looking deeply. I am grateful for Casey’s lessons.
Suleika and Anne, I know you feel what I feel. I send you my love and my thanks for your bravery and presence and your generosity. I send you my wishes for a full and healthy life.
Mar 10, 2022Liked by Suleika Jaouad, Carmen Radley
Beautiful. Just beautiful. My son had cancer at 14, now he’s 29 and well. So much rings true especially about the mirror of what we show our sick children. Thank you. Sending love.
Mar 10, 2022Liked by Carmen Radley, Suleika Jaouad
Wow that was incredible to read. It really resonated with me as a mother of a 15 year old. Thankfully she is not ill nor am I. However I am struggling with letting go and realizing her independence and being on the verge of young adulthood. So often I am confused by my own need for her and my need to mother vs allowing her independence. She often asks me for more freedom and I struggle with rightfully allowing this vs keeping her safe. Anne is such a wise person and mother and I feel I continue to learn from her (and from you Suleika). Such an honor to live alongside both of you and your wisdom.
Such a gorgeous conversation, and so very wise. Also very powerful to hear this chorus of voices saying, “Yes, THIS” or “Yes, THAT” or “My situation isn’t exactly the same, but these words still resonate.” What a gift you’ve given, dear Anne and Suleika, and what a gift this community gives in return ❤️
After battling both Covid and breast cancer in 2020, last summer my darling husband and I moved in with my elderly parents to get more caregiving support as I continue to be debilitated by long Covid.
The mutual gifts of this experience are countless, one of the most surprising being the renewed sense of purpose it has given my parents to be able to care for and help support us. It is writing a new chapter in their lives that no one saw coming.
I also often wonder how painful it must be for them, and for my husband, to see my life so derailed, to see me struggle daily to try to regain it. Your conversation will help me explore this with them.
Thank you as always for your brave and giving heart. 💛
My fave part….”it’s a privilege to have such a good worry”. Suleika your mom is one of the good ones…..
What mirror do we give to a sick person? This question is so helpful to ponder. As a caregiver to 3 elderly parents I have struggled with this. Am I being too upbeat? Am I truly hearing how they want to embrace or deny the implications of their illness. Each day is different and I think being open and flexible in my response (mirror image) is one if the hardest pars of the journey. These are adults and although I am now their caregiver they are not my children and have to be treated differently. Thank you so much for this dialogue and providing a new lense to look through.
Every time I get an email in my inbox from the isolation journals I drop everything I’m doing. I quiet my mind into a space where I can absorb every word like a sponge.
There’s so much wisdom in everything you say.
It’s a wonderful thing to witness such a loving and respectful relationship between you and your mom. Such honesty.
I’m so glad to hear that this time around everything is a little easier for all of you.
Sending lots of light and love in your direction, Suleika and Anne!
Dana, it is the same for me! I relish these journal entries from Sulieka. It is uncanny how each one seems so right in step with some aspect of my own life!
Let’s start by saying the treatments haven’t tarnished your extraordinary ability to write and connect with others!!
You are incredibly blessed with touching others with your words.
I so appreciate your mother’s perspective and thoughts. It’s encouraging to hear her views from the front line and to think about her reflections on then and now. I bet she never wanted a repeat performance, but this hospitalization and treatment shows an experienced, confident mother supporting you as needed, yet realizing she needs to keep herself energized and composed.
I’m thankful you both have shared these words and experiences.
"It was so painful to see you so upset, and really heartbreaking because it changed things for you. You were trying so hard to be a normal young person, and it was the moment you understood you couldn’t be." So beautifully said, Anne. As an oncology nurse and mother of a childhood ALL survivor, I feel both of your heartbreak as well as your determination to be present for each other, while respecting and encouraging independence. Such a beautiful dance you share. In my memoir, I share my struggle to let go of the responsibility for keeping my teen-age son survivor safe. Afterall, I was the cancer nurse who knew what he should be doing for his body. But he taught me that we need to live from our heart as well as our head. Blessings to you both in these precious moments you share.
Oh Suleika once again you have nailed it for us. I have two sons with wives whom I've come to love as my own. So far cancer has stayed clear of this little family cohort but my daughter-in-law and I have shared a similar spinal cord issue that has very nearly killed us both over the past eight years. The big difference between us is that I am now 70 and she is 39. Her drive to resume every aspect of her life from insane fitness routines to a draining, stressful but highly meaningful career scare me so much for her. We have talks where I try as gently and non-intrusively as possible to slow her down. Other times I scream out in my fear, “What the fuck, Sara!” When reading your book (3 X now), I often find myself reading it from the perspective of a mother of adult children. It is sooooo hard to be us at times. Well done, Anne. You have raised an amazing daughter. What I have finally understood about my beloved Sara is that she is 39 and I am 70. We bring different energy levels, different stamina and different aspirations to our situations. I will always support her and most importantly my son who is her husband and primary caregiver but I have learned at the same time that I must honour my own life, my own marriage and my own distinctly different aspirations I have for the years I will yet be given. Sara and I developed this enormous kinship not just because she married my son and before her illness gave me a beloved grandaughter but because we had so much in common careerwise. In terms of our diagnoses we were the only people we knew who understood what spinal cord deterioration and that kind of nerve pain and the drugs being pushed at us ...well, what that felt like and how we could make best decisions for our own healthcare. Unfortunately what our intense closeness caused for me over time was an emotional estrangement from my son, her husband and primary caregiver. He came to feel that I was only there for Sara and had no idea the burdens and challenges he was dealing with. Sara had me and her own mother and sister and friends. There was no one like that there for him. Fortunately, and I do not recollect how this came about but we decided to see a therapist together. Over 3 or 4 sessions (at $300 per hour so we’d get down to business fast) I learned how desperately this 40 year old man needed his mother in his corner too. He learned what my illness had done to me and how empty my own bucket was both physically and emotionally. Understanding these things about each other changed everything for us. Sara already has a most excellent mother. She does not need any mothering from me. We share specific intelligence about our health but she already has the mothering covered elsewhere. I refocused my energy on making MYSELF well and rebuilding my relationship with my son. His version of me was still the Superwoman of his childhood. Now he came to understand how fragile I had become, how PTSD and multiple regimes of drug infusions then opioid withdrawals had drained me. Nonetheless I was now able to give him the understanding that I would ALWAYS be in HIS corner FIRST. We don’t need to be 70 year old superwoman marathon runners to meet our adult children's needs. A voice at the end of a telephone line can do it. Thankyou Suleika and Anne. God bless you for the conversations and understanding you are facilitating.
I am a lucky one who is cancer free. But I have so many friends in various stages of cancer so your clear and honest writing helps me know how to be a better friend and support. Particularly your gift today about what are we mirroring. I have to deal with my own fears and discomfort so I can really be there with my friends. Thank you for continuing to give your gifts to us all through your hardest times. I am truly grateful.
Between 2002 and 2010, as an oncology nurse, I had this realization about how the caregiver role is the most difficult and now that I am a recent breast cancer survivor myself, I can see how much it is true from another perspective.
Our loved ones can only imagine what our reality is and their human nature bumps up the perceived intensity. It’s the reason Alfred Hitchcock never needed to show any actual blood and gore in his motion pictures - he knew that his audience would create in their minds eye something more gruesome than he would have been able to portray on film.
I am very fortunate to have both my now-82 year old mother and my now-29 year old daughter in my life. Their support has been amazing. I am grateful every day for their efforts to support me as I heal from my treatments.
Sending you and your dear mother much love, Suleika. ❤️
Love this insight about how we imagine the worst--how it wasn’t necessary for Hitchcock to add the gore, because he knew our minds would go to the worst. Seems very true.
Thank you for an in-depth discussion of the tears, fears and victory of moving forward. 🙏🏻 for the next journey.
I appreciate both of your candor and love. In 1997 when I had breast cancer (age 41), my mother went to one support group for parents. She said that she too needed support. One of the best coping mechanisms for caretakers, 'take care of yourself,' and then be there for your family or friend.
That was a wonderful piece. Thank you so much for sharing this. All of the things you shared resonate with all mothers letting their adult children go. It is a difficult world out here and it is hard to see your child struggling. Thank you for the idea of good worries.
Oh, Suleika and Anne, how this spoke to me. The startling adjustment and courage necessary to find a whole new Suleika, the strength infused through caregiving and the bravery and honor of letting go for Anne. Twelve years ago yesterday we lost our almost 20 year old Casey after a long battle with ALL. None of us will ever be the same, we are grieving still, we are more powerful than ever, we send and receive love in a different but beautiful way. Casey was brave beyond words, insisted on living, traveled the world, broke her wrist snowboarding, all while in some phase of treatment. There was no stopping her. One of her last pieces of advice to me was “mom, you must keep going.”
I had the honor and gift of speaking to Thich Nhat Hanh at a retreat after Casey’s death. I shared that I felt Casey in every cell of my body but still wondered, would I ever be really happy? He looked into my eyes and said that if I was able to look deeply at the flowers, the tree, the tea in my cup, I would see Casey, I would see her everywhere, I would have many daughters. And he smiled. So sweet, so warm, so comforting. Many years ago I was given a dharma name by Thay, Awakening Smile of the Heart. I try to embody that name. I try to live looking deeply. I am grateful for Casey’s lessons.
Suleika and Anne, I know you feel what I feel. I send you my love and my thanks for your bravery and presence and your generosity. I send you my wishes for a full and healthy life.
(You can see Casey on Instagram at robeau53)
This is so poignant, so beautiful. Truly a gift to read this. Thank you ❤️
❤️
Beautiful. Just beautiful. My son had cancer at 14, now he’s 29 and well. So much rings true especially about the mirror of what we show our sick children. Thank you. Sending love.
Wow that was incredible to read. It really resonated with me as a mother of a 15 year old. Thankfully she is not ill nor am I. However I am struggling with letting go and realizing her independence and being on the verge of young adulthood. So often I am confused by my own need for her and my need to mother vs allowing her independence. She often asks me for more freedom and I struggle with rightfully allowing this vs keeping her safe. Anne is such a wise person and mother and I feel I continue to learn from her (and from you Suleika). Such an honor to live alongside both of you and your wisdom.