Prompt 258. Not There, But Here by Mariah Zebrowski Leach
Suleika, your story about Sunshine (Sunscreen, Sunburn), and the picture of your two silly ones celebrating with empty glasses, brought me to tears. These little ones are gifts of joy, and what they bring to our lives reminds me of my carpe diem: gratitude.
In response to today’s prompt, I apologize in advance for writing, again, about the loss of my wife. But I do so because Mariah’s story resonates and is emblematic of the devastation that followed my wife’s death. I will keep it brief.
To me, the conclusions of Suleika’s and Mariah’s stories are similar. “Stop and smell the flowers.” Hidden within this suggestion is the recognition that gratitude is life giving. Rather than seizing the moment by consuming and grabbing, gratitude can be found each moment by sitting (figuratively and literally) in silence, observing, noticing those things that bring joy, that trigger appreciation of unexpected gifts, like the wonder and innocence of a silly puppy (I know this could be a run-on sentence).
The effect of the devastation on Mariah following the destruction of her home and neighborhood is quite like the defeat I experienced following Mary’s death (“…I felt a twist of pain in my belly.”). My world was dead. There were days when I literally wanted to climb the walls to escape my suffocating anxiety about what happened and the dark uncertainty of the future. I am not so sure I have weathered the storm, but I am still breathing. This is my unfinished journey, at least here, on this Earth. I endeavor to continue the journey, but I have not yet found the way to carry on with me in the physical realm and Mary in the formless realms. So, while that pursuit is proceeding, I am “here,” not “there,” filing away my moments of gratitude in that big, invisible library of emotions. Helping others to realize their potential gives me a purpose and adds some of the meaning I have lost.
Thanks for this reminder about grief. It has a mind of its own, playing hide and seek, taunting, challenging, smirking. I have heard this about grief: grief is like a boulder on your shoulders. It is heavy. In time, the boulder is still there, but it is lighter, because you have become stronger. I feel there is some truth to this. It will never go away - it has integrated with my life.
I'm in the same boat - thanks for your participation. I hear you loud and clear. Often I feel ashamed to still be "here" not there yet, after the loss of my husband - wherever "there" is. Maybe it's not a destination but more of a mindset. I appreciate your presence in this extraordinary company of generous humans.
I have often thought that this journey is a boat without a sail (Sting - "Ghost Story"). Time to hoist one up. Do not feel ashamed, but I know this feeling, survivor's guilt. These events we did not choose. I agree that the destination is a mindset, but it is also a "place" in consciousness, and this is a "real" place. Thank you for your comment.
Please do not ever feel the need to apologize for sharing your grief in losing your wife Mary. Grief is a very personal journey and it is different for everyone. There is no correct way to grieve nor is there a time limit for our grief. Your words are beautiful, William. Whenever I read your words when you share your journey I can feel how much you miss Mary. And your words, "Helping others to realize their potential gives me a purpose and adds some of the meaning I have lost" is a testament to your care and concern of your fellow man and most importantly yourself. We are all in this journey of life together and we can help one another in tremendous ways if we choose to do so. I am keeping your Mary and you in my daily prayers.
William, I feel even closer to my comment on your piece today than I did a week ago. On 8/30 my husband had a heart attack and stent procedure. It's been a wild week and I thought of you and your writing often. My husband is recovering, fingers crossed (and toes 😂) - such a hard scary time. I'm so sorry that you lost your wife. I walked around the hospital while he was in surgery and thought " am I going to be a widow now?" Trying on the idea of the scariest thing imaginable . I'm sorry for what you've gone through and sorry for your loss. ❤️❤️❤️
This, indeed, is a traumatic experience for both of you. These things seem to happen at the most unexpected times, and we are tested on many levels. In a blink of an eye, your lives have changed dramatically. Almost a week out, but looking back, it must be somewhat comforting to know that your husband got the appropriate care. I will be thinking of and praying for both of you as you face new directions in your lives. Yes, breathing during and after the storm is a gift.
Thank you William. I'm in a choir at church and I found myself singing
a song by Melissa Phillips "Love goes ahead of me, love blesses my way, infuses all I do and say... it is love that leads me today." Breathing through and in the storm . Thank you. For your kind words.❤️🙏❤️🩹
Aug 27, 2023·edited Aug 27, 2023Liked by Suleika Jaouad, Holly Huitt
"..but I think I was waiting for some sort of conclusion to my own story—as if I would magically hit some special point where my own life experiences would culminate into some resonant ending." Mariah's words reminded me of something. In 2013-2014 I worked on a memoir that detailed a life of immense struggle and culminated with me having a brain surgery that left me unable to walk or see. The manuscript ends with a triumphant graduation with a masters degree and subsequent successful career as a psychotherapist. The lesson? Persevere because God will come through for you (always). About two weeks after the manuscript was finished, I found out that due to lots of errors on the part of my team of doctors, the brain tumor had grown back and I would have to have the surgery all over again. The thriving private practice I had written about had to close down in 2014 and my future was all but certain. I've been thinking about that a lot lately, and even started a new piece of writing yesterday. The story is different, but also valuable. Suleika's words, Instead, my guiding principle is to meet every day as if it’s my first—to welcome each new morning with the wonder and curiosity of a newborn. Rather than what I can get out of this life or what I can seize from it, I’ve reoriented my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me" is how I want to view my life, and if I write about it, I want it to be life-giving words...helpful words. Thanks, Suleika...you always remind me of what's really important. Congratulations on adopting Sunshine!
Thank you, Linda, for your kind words! This: "The story is different, but also valuable" is so important. It's not about the story itself as much as the meaning we make from it. ❤️
This feeling of living in a body that does what it does at any given moment.. and how there's this internal struggle to dare to trust the future the way 'normal' people do (who know not of tumors and such).. The other day, as I struggled to dare think a bit more long-term, and start a new, big project.. move into the direction of my dreams.. I shared my fears and anxious thoughts and overwhelm with a friend.. who then told me to 'grow up'. Which hurt more than a slap in the face. To which I replied 'I grew up a long time ago, had the career and the family and the apartment in the best neighborhood and then had the tumor'.. After, when you're well, people tend to forget. While the fear and each check-up, time and again tend to keep one (me) in that same place of helplessness and fear.. and then, the daily self-encouraging and yours, with these texts Suleika, to press on and keep on and live on, regardless. Thank you. For every word, and this wonderful community of those who get it.
Yes, people do forget and/or never understood or took the time to feel empathy in the first place. Good for you for answering as you did. To pressing on! ❤️
Elvira - I stopped sharing my overwhelm with people I call my "snap-out-of-it" friends. When that happens, I rely wholeheartedly on the compassion and buddha-like wisdom my dogs show me. Much better company.
I believe it to be so, yet can't help but wonder, why is it we who suffer can hold so much, while these "snap out of it/grow up"- self-appointed advisors can't even hold their tongues..
I think it’s a response from their own fears, insecurities, past traumas. I also believe those who respond in this manner are not consciously aware of how their “words are weapons” to another. I believe your reply was perfect I speaking your truth. 🙏🏼❤️
My husband and I were sitting having coffee/tea and talking this afternoon and part of our conversation was about the judgment and insensitivity which can come from people who think they know or understand your personal situation. My mouth dropped open when I read the words your friend said to you. I have experienced judgment and/or unkind words from people whom I thought were trusted friends. The first few times I experienced this, I was stunned. I had to digest the words which were said to me with such blatant judgment. As time has gone on, I have learned that there are certain people I simply cannot have in my life any longer. It sounds cold, but I have learned through great adversity that I have to think about myself first and surround myself with people who want to support me in a positive manner. And I don't tolerate people saying judgmental or negative things anymore. I am past the stage of being stunned and while unkind or cruel comments will always sting, I have a choice as to how I react to them and what I do with them. Until someone has lived with a body that does not do what our minds want it to do due to a physical ailment, they cannot know what you are living with on a daily basis. Some try to understand as best they can and support you as best as they can, while others are either incapable of it or simply choose not to.
My age holds me back and maybe it will move me forward. Years ago I bought the Kit Kat Clock a big expense. The clock symbolized me starting life. somewwhere it got lost and I just bought it again. Life turns out different and I don/t know what I expect but I am one going. Since my puppy Mommy Mayhem died, I was afraid to get a tiny Chihuahua because of my age.. now I want to bring one home to carry and love.
As I watch my 15 year old rescue pup show all the signs of aging that are not so dissimilar from humans, I could not imagine another at this time in my life. You helped me think again!
I have 2 rescue pups, but have also been thinking of getting a puppy, even though I know how hard it will be and my age. Do I have 15 years left to love a dog?
Sulieka let me congrats on the new dog. Shes adorable. A prompt like this reminds about the moment i picked up your book after debating for so long until one day when things were good with my daughter in the hospital and something told picked it up without thinking. That book was a whole new experience for me. Regards to the prompt my unfinished journey has to do with 2022 and my daughter. When things happened i put my business mentally on the back burner because i just couldn't deal other people with unpredictableness present. When everything settled down very late 2022 that when i realized i was a complete mess in dealing with all the emotions. She transitioned to adult care so i had recant everything which was emotionally taxing. I started to realize though that each time i did sense some healing of the traumatic scars. Through some personal development and dealing with the mental confusion i do finally think after many lapses where i thought i was through I have made to place where I'm in a better place. As a special needs parent you feel so judged by looks and words. Through some of that personal development I've started to view that in a different and not let what others do or say affect me so personally. My daughter has done so wonderfully for so many years and i realize in her own way she been trying to teach me that. I'm finding a better balance in a way when it comes to family and building my business. Happy Sunday Sulieka.
“Rather than what I can get out of this life or what I can seize from it, I’ve reoriented my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me.”
Love this line and your perspective Suleika! An inspiration for how to look at my life even amidst trials and grief--thank you!
This post today, touched my heart deeply. Suleika your journey with Sunshine and that photo (like who would ever say no to that cuteness)!! I too resonated with this quote Lenore,“reorienting my gaze to what can be life-giving”.
I’ve been in transition and feel like I’m in a moment where staying and settling without long range plans is a way of being more present with myself and those I’m closest to. The post by Mariah also resonates as a reminder that it’s the journey that is of significance not the destination.
Together these stories remind us of the importance of the gifts in the “everyday”. That we all have profound loss and grief, moments of struggle. Yet, the sun rises and small joys and wonderful surprises still exist, as we open our hearts to embrace the journey with gratitude.
While fear, anger, sadness may arise these are markers, speed bumps, pot holes or detours on the road. It’s how we choose to navigate these “interruptions” that bring us to the next destination.
So, why not choose love and gratitude in life-giving and receiving? These moments are the unexpected sunsets as you sit with your broken down car, the joy a 2-year old brings jumping in your lap as you grieve a most profound loss of a loved one, or the wild flowers that grace the side of the road where you hit that darn pot hole again!I This is how I interpret Suleika’s perspective of “reorienting my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me.” ❤️🙏🏼
I was diagnosed with Rheumatoid Arthritis at age two. I was so young that even today, in my fifties, they refer to it as Juvenile RA. This chronic illness has been a part of my whole life, and I have never known differently. My family tells me stories of my pain that I cannot even remember. The time I climbed to the landing before the turn in the stairs only to stall because I could not make it the rest of the way up. The pictures of a Disneyland trip with me in an umbrella stroller with my knees up by my chin because I was much too big to be in a stroller. And the disapproving looks of those around us. My mother was told to make me walk more than once. I have ebbed and flowed with JRA. There are times I never knew I had it. There are times when it was all I thought about. Because of this yang and yang, I feel like I am always waiting for the other show to drop. When will I come out of remission and get slammed with it again? After reading this weeks post, I was struck by the fact that this is true of all those who deal with chronic illness. I am also stuck by the fact that the shoe will drop whether I like it or not. So just keep moving. Thanks for making me feel okay with being part of this club that I never meant to sign up for.
I'm so glad you're here. I started the Isolation Journals with the hope that it would help us all turn our difficult times into creative grist. We keep moving here, and sometimes—oftentimes—even more than that. ❤️
"Thanks for making me feel okay with being part of this club that I never meant to sign up for." Your words perfectly describe how those of us with physical ailments, diseases feel when we find others who understand and can relate to our experiences. Like you, my sister has RA and I have seen what she has to live with every day. I am happy for you that yours is in remission and I hope and pray for you that it remains there.
GR, you are rock hard strong, and an inspiration. I wish for you, to not be so. By that, I mean, I wish for you, for the pain to stop. I also feel so mad at people judging you, disapproving of you and telling your mother how to do her job. She knew what she was doing to love you, to give you opportunity to meet you where you were. May the remission be the cessation and if it cannot be, please know that I am pulling for you!!
“I’ve reoriented my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me.”
Suleika
&
“Practice resilience… and figure out how to thrive where you are…” reworded a bit.
Mariah
This is a life a life worth living!
I was thrilled when we finally got pregnant with our son, Tyler, and disillusioned with each miscarriage after him. It was always my plan to have child(dren), but my body said otherwise, and when our adoption plan fell through, I wallowed in grief.
I can't remember when it began, but when I look back on the years of raising our son, I realize that I became a surrogate mother wherever we landed: from volunteering with the toddlers at a Katrina victims Red Cross site - eventually, I brought a 2-year-old Tyler for play dates, to volunteering at the Montessori school down the street, to reading with children with learning differences at his elementary school, to being a Site Director for elementary age children, to producing a large-scale talent show with middle school kids, to mothering young women who struggled with addiction, to being a “Buddy” to sweet Abby, with special needs, to coaching young adults who have aged out of foster care, to opening our home for young musicians to have a place to crash.
For me, living is loving, and I never imagined I’d be blessed with loving on babies, toddlers, youth, and now young adults right around our son’s age. “God Has” and gave me countless children to love. My heart is whole, and I am grateful. 🙏🏾
Tammy, you are such a beautiful human being. Like you, I believe "living is loving". We never know which direction our lives are going to lead us or how things are going to turn out, but when we look back at our experiences, we see God's hand in all of it. Yes, God has given you many children to love in this world and I can only imagine how many blessings each of these human beings have received from you in their lives.
Aug 27, 2023Liked by Suleika Jaouad, Carmen Radley
This morning I made waffles with slice bananas and blueberries, and as I was mixing the batter, I was so conscious of doing it. I’m doing this, I thought, I’m on my feet making waffles, then I’ll sit at the table with Dave and wash down each delicious bite with a sip of his great coffee.
A simple exercise which is so indicative of how I live these days, monitoring everything I do for signs that I’m really alive. I, too, have struggled with a cancer that, in the words of my first oncologist, “has a tendency to come back.” Which it did last year, and which it may do again. I go through the motions of life now with that always on my mind. Sometimes I’m amazed at the strength in me; that I can go to New York to see my grandkids' graduations, which I did; that I can go on a two-week road trip with my family, like I also did recently; that I can attend a wedding and laugh and visit with friends.
After being so sick I find it remarkable that I can do these things, but the "specter of relapse" is always, always, on my mind. How to live with it is a never-ending challenge. During my low periods, I have thought that if I’m faced with a repeat of that awful experience, I won’t fight it this time. I’ll just find a way to end it all, to be done with it so I don’t have to suffer like that again.
I say this with full knowledge of the audience who may read this, those who I hope will understand that compulsion without judging or protesting. It is thoughts, not a decision. It’s the voice in me desperately grappling with the unthinkable, trying to deal with a fearsome monster looming before me. Do I fight it or do I run away?
Reading your weekly essays, Suleika, and those of the fine writers you give space to, helps me focus on what I need to do to live, to find happiness in the little things. This rocky journey will never be easy, but what you offer is wisdom to those of us who need it most. May your life be filled with tiny moments of pure joy, each a microcosm of all that life could be.
Your beautiful newsletter and prompt are timely, Suleika. I've been musing on life's journey and shared the following by Leo Buscaglia just nine hours ago on my Facebook page:
“It's not enough to have lived.
We should be determined to live for something.
May I suggest that it be creating joy for others,
sharing what we have for the betterment of personkind,
bringing hope to the lost and love to the lonely.”
I'm grateful for your life-affirming writing, Suleika. And to the courageous souls who share in this community.
We're all trying to grow in resilience and understanding. 💛
It’s been a hard week and I’m struggling to concentrate when I try to read, but the picture of Sunshine and River in their party hats spoke to me right away. Sending love to your sweet family, Suleika.
Both Suleika & Mariah have so many insightful messages in these writings! 🙏 thank you for the Sunday morning reminders, I always start on the couch at the bay window, the jungle I planted out there peering in at me, the favorite art pieces on the window ledge.......coffee, Sunday nytimes at the ready, with the isolation journals and it never disappoints.
My life has been interrupted so many times, plans abruptly changed or contemplated & journaling has always been my make sense of it all place. Before I read in bed at night i reflect on the day & write. It helps me process all the hiccups & joys, developments, ideas & possibilities and of course frustrations. I don’t live each day as my last or god help me I’d be floating in the ocean with lots of snacks & wine & books on the beach or visiting my kids so often they’d kick me out or whatever the cravings were at the time. I’ve been doing my best to notice, to feel and to engage & help where I can, in my community or further out in the world. This community is beautiful as a touchstone ❤️🎨💃🧶⛺️🌊🎸👩🏻🍳for whatever we’re sharing!
Congratulations on your puppy! I’m sure you already know about all of the off leash parks in and around prospect park- but once our puppy was vaccinated taking her to the parks was so helpful in her overall behavior. So my one tip- the Kensington dog park has a hose, astroturf and a very small shade if you should find yourself on that side of the park.
Aug 27, 2023Liked by Suleika Jaouad, Carmen Radley
It is so easy, in the light of day, to be positive in the face of life’s huge challenges-age, chronic health problems, the death of a spouse of nearly 50 years. You wake up, decide to get on with your life, like everyone tells you too, sell your house of 40 years, the home you raised your children in, the home you isolated in during Covid taking care of your husband as he slowly succumbed to cancer, the home he died in during that Covid isolation. You just get up and sell it and buy land and get going on a home that is all yours, a new home, where you will live out the remainder of your life. It sounds so easy. During the light of day, with the sun shining ( hoping for rain as Las Cruces, NM is parched and incredibly hot this year), you plan you live in the today, but embrace the unknown future. Mind over matter is easy in the light of day. But...then comes the night. The long, lonely sleepless nights. It gets harder to be positive in the dark. One’s imaginations run riot, often bring about the worst thoughts. The future becomes unimaginable. It becomes questionable. It becomes frightening. I love lighting the candles on Shabbat. Bringing in the light. Because light is so much about the positive, the hope, the future. Thanking G-d for all of it. Light. Always find the light. Live in the light. Revel in the mundane of just the here. Just the now. Just the light. Let the future go. It will find you soon enough.
Prompt 258. Not There, But Here by Mariah Zebrowski Leach
Suleika, your story about Sunshine (Sunscreen, Sunburn), and the picture of your two silly ones celebrating with empty glasses, brought me to tears. These little ones are gifts of joy, and what they bring to our lives reminds me of my carpe diem: gratitude.
In response to today’s prompt, I apologize in advance for writing, again, about the loss of my wife. But I do so because Mariah’s story resonates and is emblematic of the devastation that followed my wife’s death. I will keep it brief.
To me, the conclusions of Suleika’s and Mariah’s stories are similar. “Stop and smell the flowers.” Hidden within this suggestion is the recognition that gratitude is life giving. Rather than seizing the moment by consuming and grabbing, gratitude can be found each moment by sitting (figuratively and literally) in silence, observing, noticing those things that bring joy, that trigger appreciation of unexpected gifts, like the wonder and innocence of a silly puppy (I know this could be a run-on sentence).
The effect of the devastation on Mariah following the destruction of her home and neighborhood is quite like the defeat I experienced following Mary’s death (“…I felt a twist of pain in my belly.”). My world was dead. There were days when I literally wanted to climb the walls to escape my suffocating anxiety about what happened and the dark uncertainty of the future. I am not so sure I have weathered the storm, but I am still breathing. This is my unfinished journey, at least here, on this Earth. I endeavor to continue the journey, but I have not yet found the way to carry on with me in the physical realm and Mary in the formless realms. So, while that pursuit is proceeding, I am “here,” not “there,” filing away my moments of gratitude in that big, invisible library of emotions. Helping others to realize their potential gives me a purpose and adds some of the meaning I have lost.
Please don't apologize for writing about Mary. It is very moving. We SO don't need to be in one spot or another in our grief.
We don't get to/cannot move on unbruised or unscathed. We have been violently, yet fabulously, cracked open.
This is how we are now.
Thanks for this reminder about grief. It has a mind of its own, playing hide and seek, taunting, challenging, smirking. I have heard this about grief: grief is like a boulder on your shoulders. It is heavy. In time, the boulder is still there, but it is lighter, because you have become stronger. I feel there is some truth to this. It will never go away - it has integrated with my life.
I'm in the same boat - thanks for your participation. I hear you loud and clear. Often I feel ashamed to still be "here" not there yet, after the loss of my husband - wherever "there" is. Maybe it's not a destination but more of a mindset. I appreciate your presence in this extraordinary company of generous humans.
I have often thought that this journey is a boat without a sail (Sting - "Ghost Story"). Time to hoist one up. Do not feel ashamed, but I know this feeling, survivor's guilt. These events we did not choose. I agree that the destination is a mindset, but it is also a "place" in consciousness, and this is a "real" place. Thank you for your comment.
I love "I'm not so sure I have weathered the storm, but I am still breathing." I totally relate. Keep writing .❤️🐝
No apologies, William. Thank you for sharing and I hope you feel free to share as much as you want.
And this:
“Helping others to realize their potential gives me a purpose and adds some of the meaning I have lost.”
The path for now…
Please do not ever feel the need to apologize for sharing your grief in losing your wife Mary. Grief is a very personal journey and it is different for everyone. There is no correct way to grieve nor is there a time limit for our grief. Your words are beautiful, William. Whenever I read your words when you share your journey I can feel how much you miss Mary. And your words, "Helping others to realize their potential gives me a purpose and adds some of the meaning I have lost" is a testament to your care and concern of your fellow man and most importantly yourself. We are all in this journey of life together and we can help one another in tremendous ways if we choose to do so. I am keeping your Mary and you in my daily prayers.
Wow. Thank you for your prayers and wonderful, kind words. Yes, we are one big family. Peace be with you.
William, I feel even closer to my comment on your piece today than I did a week ago. On 8/30 my husband had a heart attack and stent procedure. It's been a wild week and I thought of you and your writing often. My husband is recovering, fingers crossed (and toes 😂) - such a hard scary time. I'm so sorry that you lost your wife. I walked around the hospital while he was in surgery and thought " am I going to be a widow now?" Trying on the idea of the scariest thing imaginable . I'm sorry for what you've gone through and sorry for your loss. ❤️❤️❤️
This, indeed, is a traumatic experience for both of you. These things seem to happen at the most unexpected times, and we are tested on many levels. In a blink of an eye, your lives have changed dramatically. Almost a week out, but looking back, it must be somewhat comforting to know that your husband got the appropriate care. I will be thinking of and praying for both of you as you face new directions in your lives. Yes, breathing during and after the storm is a gift.
Thank you William. I'm in a choir at church and I found myself singing
a song by Melissa Phillips "Love goes ahead of me, love blesses my way, infuses all I do and say... it is love that leads me today." Breathing through and in the storm . Thank you. For your kind words.❤️🙏❤️🩹
A world without music or song would be hell for me. Keep singing!
"..but I think I was waiting for some sort of conclusion to my own story—as if I would magically hit some special point where my own life experiences would culminate into some resonant ending." Mariah's words reminded me of something. In 2013-2014 I worked on a memoir that detailed a life of immense struggle and culminated with me having a brain surgery that left me unable to walk or see. The manuscript ends with a triumphant graduation with a masters degree and subsequent successful career as a psychotherapist. The lesson? Persevere because God will come through for you (always). About two weeks after the manuscript was finished, I found out that due to lots of errors on the part of my team of doctors, the brain tumor had grown back and I would have to have the surgery all over again. The thriving private practice I had written about had to close down in 2014 and my future was all but certain. I've been thinking about that a lot lately, and even started a new piece of writing yesterday. The story is different, but also valuable. Suleika's words, Instead, my guiding principle is to meet every day as if it’s my first—to welcome each new morning with the wonder and curiosity of a newborn. Rather than what I can get out of this life or what I can seize from it, I’ve reoriented my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me" is how I want to view my life, and if I write about it, I want it to be life-giving words...helpful words. Thanks, Suleika...you always remind me of what's really important. Congratulations on adopting Sunshine!
Thank you, Linda, for your kind words! This: "The story is different, but also valuable" is so important. It's not about the story itself as much as the meaning we make from it. ❤️
Yes!
🫶🏾🫶🏾🫶🏾
This feeling of living in a body that does what it does at any given moment.. and how there's this internal struggle to dare to trust the future the way 'normal' people do (who know not of tumors and such).. The other day, as I struggled to dare think a bit more long-term, and start a new, big project.. move into the direction of my dreams.. I shared my fears and anxious thoughts and overwhelm with a friend.. who then told me to 'grow up'. Which hurt more than a slap in the face. To which I replied 'I grew up a long time ago, had the career and the family and the apartment in the best neighborhood and then had the tumor'.. After, when you're well, people tend to forget. While the fear and each check-up, time and again tend to keep one (me) in that same place of helplessness and fear.. and then, the daily self-encouraging and yours, with these texts Suleika, to press on and keep on and live on, regardless. Thank you. For every word, and this wonderful community of those who get it.
Yes, people do forget and/or never understood or took the time to feel empathy in the first place. Good for you for answering as you did. To pressing on! ❤️
Thank you Suleika, it means a lot <3
Elvira - I stopped sharing my overwhelm with people I call my "snap-out-of-it" friends. When that happens, I rely wholeheartedly on the compassion and buddha-like wisdom my dogs show me. Much better company.
I believe it to be so, yet can't help but wonder, why is it we who suffer can hold so much, while these "snap out of it/grow up"- self-appointed advisors can't even hold their tongues..
I think it’s a response from their own fears, insecurities, past traumas. I also believe those who respond in this manner are not consciously aware of how their “words are weapons” to another. I believe your reply was perfect I speaking your truth. 🙏🏼❤️
And I think you hit the nail on the head with your response!!
I love your reply.
My husband and I were sitting having coffee/tea and talking this afternoon and part of our conversation was about the judgment and insensitivity which can come from people who think they know or understand your personal situation. My mouth dropped open when I read the words your friend said to you. I have experienced judgment and/or unkind words from people whom I thought were trusted friends. The first few times I experienced this, I was stunned. I had to digest the words which were said to me with such blatant judgment. As time has gone on, I have learned that there are certain people I simply cannot have in my life any longer. It sounds cold, but I have learned through great adversity that I have to think about myself first and surround myself with people who want to support me in a positive manner. And I don't tolerate people saying judgmental or negative things anymore. I am past the stage of being stunned and while unkind or cruel comments will always sting, I have a choice as to how I react to them and what I do with them. Until someone has lived with a body that does not do what our minds want it to do due to a physical ailment, they cannot know what you are living with on a daily basis. Some try to understand as best they can and support you as best as they can, while others are either incapable of it or simply choose not to.
Thank you Susan for sharing this. The other day, I read 'before boundaries must come healing ' and perhaps that's what's up now..
Elvira, may I ask where you read ‘Before Boundaries Must Come Healing’? I would like to read it. It is such an important part of the journey.
Yes, I read it in a newsletter of a South-African Sufi retreat leader I follow, I can forward it to you if you'd like, dm me ; )
I would appreciate it! I don’t know how to dm on here?
I don't either, I thought it was possible : D here's my email
elviraplus@yahoo.com
Other people’s fear can act on us so cruelly. It’s been a hard lesson to learn.
My age holds me back and maybe it will move me forward. Years ago I bought the Kit Kat Clock a big expense. The clock symbolized me starting life. somewwhere it got lost and I just bought it again. Life turns out different and I don/t know what I expect but I am one going. Since my puppy Mommy Mayhem died, I was afraid to get a tiny Chihuahua because of my age.. now I want to bring one home to carry and love.
Yes, get the puppy!
As I watch my 15 year old rescue pup show all the signs of aging that are not so dissimilar from humans, I could not imagine another at this time in my life. You helped me think again!
Keep giving ❤️
I’m happy for you that you feel ready for a new puppy.
I have 2 rescue pups, but have also been thinking of getting a puppy, even though I know how hard it will be and my age. Do I have 15 years left to love a dog?
Sulieka let me congrats on the new dog. Shes adorable. A prompt like this reminds about the moment i picked up your book after debating for so long until one day when things were good with my daughter in the hospital and something told picked it up without thinking. That book was a whole new experience for me. Regards to the prompt my unfinished journey has to do with 2022 and my daughter. When things happened i put my business mentally on the back burner because i just couldn't deal other people with unpredictableness present. When everything settled down very late 2022 that when i realized i was a complete mess in dealing with all the emotions. She transitioned to adult care so i had recant everything which was emotionally taxing. I started to realize though that each time i did sense some healing of the traumatic scars. Through some personal development and dealing with the mental confusion i do finally think after many lapses where i thought i was through I have made to place where I'm in a better place. As a special needs parent you feel so judged by looks and words. Through some of that personal development I've started to view that in a different and not let what others do or say affect me so personally. My daughter has done so wonderfully for so many years and i realize in her own way she been trying to teach me that. I'm finding a better balance in a way when it comes to family and building my business. Happy Sunday Sulieka.
Sending love to you, Rob! You're on the right path. ❤️
Thank you Sulieka!
Good for you, Rob. One day at a time.
“Rather than what I can get out of this life or what I can seize from it, I’ve reoriented my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me.”
Love this line and your perspective Suleika! An inspiration for how to look at my life even amidst trials and grief--thank you!
This post today, touched my heart deeply. Suleika your journey with Sunshine and that photo (like who would ever say no to that cuteness)!! I too resonated with this quote Lenore,“reorienting my gaze to what can be life-giving”.
I’ve been in transition and feel like I’m in a moment where staying and settling without long range plans is a way of being more present with myself and those I’m closest to. The post by Mariah also resonates as a reminder that it’s the journey that is of significance not the destination.
Together these stories remind us of the importance of the gifts in the “everyday”. That we all have profound loss and grief, moments of struggle. Yet, the sun rises and small joys and wonderful surprises still exist, as we open our hearts to embrace the journey with gratitude.
While fear, anger, sadness may arise these are markers, speed bumps, pot holes or detours on the road. It’s how we choose to navigate these “interruptions” that bring us to the next destination.
So, why not choose love and gratitude in life-giving and receiving? These moments are the unexpected sunsets as you sit with your broken down car, the joy a 2-year old brings jumping in your lap as you grieve a most profound loss of a loved one, or the wild flowers that grace the side of the road where you hit that darn pot hole again!I This is how I interpret Suleika’s perspective of “reorienting my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me.” ❤️🙏🏼
I love your interpretation, Karen. ❤️
Thank you for inspiring and creating this space for so many 🙏🏼
Beautiful, Karen. Your message resonates. Great to see you here ♥️
Thank you Laurie, I’m so grateful to be part of this amazing community
I needed to hear you words. You are giving!
thank you Harriet. wishing you peace on your path.
Beautiful writing! I so admire you people who write such moving words since I cannot. You put on paper, or screen, what is in my heart--thank you!
Brenda it just comes from the heart, thank you 🙏🏼
Agreed. How can we give to others or even do things for ourselves that are life-giving? Such a lovely perspective.
💕🙏🏼
I was diagnosed with Rheumatoid Arthritis at age two. I was so young that even today, in my fifties, they refer to it as Juvenile RA. This chronic illness has been a part of my whole life, and I have never known differently. My family tells me stories of my pain that I cannot even remember. The time I climbed to the landing before the turn in the stairs only to stall because I could not make it the rest of the way up. The pictures of a Disneyland trip with me in an umbrella stroller with my knees up by my chin because I was much too big to be in a stroller. And the disapproving looks of those around us. My mother was told to make me walk more than once. I have ebbed and flowed with JRA. There are times I never knew I had it. There are times when it was all I thought about. Because of this yang and yang, I feel like I am always waiting for the other show to drop. When will I come out of remission and get slammed with it again? After reading this weeks post, I was struck by the fact that this is true of all those who deal with chronic illness. I am also stuck by the fact that the shoe will drop whether I like it or not. So just keep moving. Thanks for making me feel okay with being part of this club that I never meant to sign up for.
I'm so glad you're here. I started the Isolation Journals with the hope that it would help us all turn our difficult times into creative grist. We keep moving here, and sometimes—oftentimes—even more than that. ❤️
"Thanks for making me feel okay with being part of this club that I never meant to sign up for." Your words perfectly describe how those of us with physical ailments, diseases feel when we find others who understand and can relate to our experiences. Like you, my sister has RA and I have seen what she has to live with every day. I am happy for you that yours is in remission and I hope and pray for you that it remains there.
GR, you are rock hard strong, and an inspiration. I wish for you, to not be so. By that, I mean, I wish for you, for the pain to stop. I also feel so mad at people judging you, disapproving of you and telling your mother how to do her job. She knew what she was doing to love you, to give you opportunity to meet you where you were. May the remission be the cessation and if it cannot be, please know that I am pulling for you!!
So I’m having a moment here… Tears!
“I’ve reoriented my gaze to what feels life-giving—both to my own sense of well-being and to the other humans and creatures around me.”
Suleika
&
“Practice resilience… and figure out how to thrive where you are…” reworded a bit.
Mariah
This is a life a life worth living!
I was thrilled when we finally got pregnant with our son, Tyler, and disillusioned with each miscarriage after him. It was always my plan to have child(dren), but my body said otherwise, and when our adoption plan fell through, I wallowed in grief.
I can't remember when it began, but when I look back on the years of raising our son, I realize that I became a surrogate mother wherever we landed: from volunteering with the toddlers at a Katrina victims Red Cross site - eventually, I brought a 2-year-old Tyler for play dates, to volunteering at the Montessori school down the street, to reading with children with learning differences at his elementary school, to being a Site Director for elementary age children, to producing a large-scale talent show with middle school kids, to mothering young women who struggled with addiction, to being a “Buddy” to sweet Abby, with special needs, to coaching young adults who have aged out of foster care, to opening our home for young musicians to have a place to crash.
For me, living is loving, and I never imagined I’d be blessed with loving on babies, toddlers, youth, and now young adults right around our son’s age. “God Has” and gave me countless children to love. My heart is whole, and I am grateful. 🙏🏾
Grateful to know you, Tammy. ❤️❤️
Tammy, you are such a beautiful human being. Like you, I believe "living is loving". We never know which direction our lives are going to lead us or how things are going to turn out, but when we look back at our experiences, we see God's hand in all of it. Yes, God has given you many children to love in this world and I can only imagine how many blessings each of these human beings have received from you in their lives.
Susan, you are so kind. So true, we can trace God’s hand in all of it! We are blessed beyond measure!🙏🏾
This morning I made waffles with slice bananas and blueberries, and as I was mixing the batter, I was so conscious of doing it. I’m doing this, I thought, I’m on my feet making waffles, then I’ll sit at the table with Dave and wash down each delicious bite with a sip of his great coffee.
A simple exercise which is so indicative of how I live these days, monitoring everything I do for signs that I’m really alive. I, too, have struggled with a cancer that, in the words of my first oncologist, “has a tendency to come back.” Which it did last year, and which it may do again. I go through the motions of life now with that always on my mind. Sometimes I’m amazed at the strength in me; that I can go to New York to see my grandkids' graduations, which I did; that I can go on a two-week road trip with my family, like I also did recently; that I can attend a wedding and laugh and visit with friends.
After being so sick I find it remarkable that I can do these things, but the "specter of relapse" is always, always, on my mind. How to live with it is a never-ending challenge. During my low periods, I have thought that if I’m faced with a repeat of that awful experience, I won’t fight it this time. I’ll just find a way to end it all, to be done with it so I don’t have to suffer like that again.
I say this with full knowledge of the audience who may read this, those who I hope will understand that compulsion without judging or protesting. It is thoughts, not a decision. It’s the voice in me desperately grappling with the unthinkable, trying to deal with a fearsome monster looming before me. Do I fight it or do I run away?
Reading your weekly essays, Suleika, and those of the fine writers you give space to, helps me focus on what I need to do to live, to find happiness in the little things. This rocky journey will never be easy, but what you offer is wisdom to those of us who need it most. May your life be filled with tiny moments of pure joy, each a microcosm of all that life could be.
Sending so much love and strength to you, Teri. ❤️
Your beautiful newsletter and prompt are timely, Suleika. I've been musing on life's journey and shared the following by Leo Buscaglia just nine hours ago on my Facebook page:
“It's not enough to have lived.
We should be determined to live for something.
May I suggest that it be creating joy for others,
sharing what we have for the betterment of personkind,
bringing hope to the lost and love to the lonely.”
I'm grateful for your life-affirming writing, Suleika. And to the courageous souls who share in this community.
We're all trying to grow in resilience and understanding. 💛
Thank you. So much. Powerful, awesome writing. Truly injecting feelings into my mind and heart.
It’s been a hard week and I’m struggling to concentrate when I try to read, but the picture of Sunshine and River in their party hats spoke to me right away. Sending love to your sweet family, Suleika.
Both Suleika & Mariah have so many insightful messages in these writings! 🙏 thank you for the Sunday morning reminders, I always start on the couch at the bay window, the jungle I planted out there peering in at me, the favorite art pieces on the window ledge.......coffee, Sunday nytimes at the ready, with the isolation journals and it never disappoints.
My life has been interrupted so many times, plans abruptly changed or contemplated & journaling has always been my make sense of it all place. Before I read in bed at night i reflect on the day & write. It helps me process all the hiccups & joys, developments, ideas & possibilities and of course frustrations. I don’t live each day as my last or god help me I’d be floating in the ocean with lots of snacks & wine & books on the beach or visiting my kids so often they’d kick me out or whatever the cravings were at the time. I’ve been doing my best to notice, to feel and to engage & help where I can, in my community or further out in the world. This community is beautiful as a touchstone ❤️🎨💃🧶⛺️🌊🎸👩🏻🍳for whatever we’re sharing!
Love picturing your Sunday morning reading set-up! ❤️
Congratulations on your puppy! I’m sure you already know about all of the off leash parks in and around prospect park- but once our puppy was vaccinated taking her to the parks was so helpful in her overall behavior. So my one tip- the Kensington dog park has a hose, astroturf and a very small shade if you should find yourself on that side of the park.
It is so easy, in the light of day, to be positive in the face of life’s huge challenges-age, chronic health problems, the death of a spouse of nearly 50 years. You wake up, decide to get on with your life, like everyone tells you too, sell your house of 40 years, the home you raised your children in, the home you isolated in during Covid taking care of your husband as he slowly succumbed to cancer, the home he died in during that Covid isolation. You just get up and sell it and buy land and get going on a home that is all yours, a new home, where you will live out the remainder of your life. It sounds so easy. During the light of day, with the sun shining ( hoping for rain as Las Cruces, NM is parched and incredibly hot this year), you plan you live in the today, but embrace the unknown future. Mind over matter is easy in the light of day. But...then comes the night. The long, lonely sleepless nights. It gets harder to be positive in the dark. One’s imaginations run riot, often bring about the worst thoughts. The future becomes unimaginable. It becomes questionable. It becomes frightening. I love lighting the candles on Shabbat. Bringing in the light. Because light is so much about the positive, the hope, the future. Thanking G-d for all of it. Light. Always find the light. Live in the light. Revel in the mundane of just the here. Just the now. Just the light. Let the future go. It will find you soon enough.
Always find the light. Sending so much love to you, Sharon. ❤️
Congrats on baby sunshine! Love your lil family!