In 1968, when I was just turning 8, my dad was stationed in Vietnam. My mom, (who hates to sweat and is NOT a fan of outdoor work) used to come outside with us (it was Summer) and while we would play, she would hand weed the cracks between the sidewalk pavers. Years later, I asked her why she did this, and she said, "There were so many things out of my control, but I could control those weeds, and doing so gave me the internal gift of reminding me that I still had influence...I could also hear your laughter, your joy, look up and see my three young daughters playing and know that I was going to provide the most stable, happy life I could for all of you in your father's absence". That stuck with me and I call it to mind, and to action, when things are out of my control. It was both things she did...the weeding and the noticing of joy.
Thank you! She is still living...her memory is challenged but her kindness and wisdom shine bright in her eyes always. She was that quiet wisdom, the hug when you need one, that light when all is dark.
In my 20s, I was able to come to a realization that my conditioned reactions to much of life were not necessary and that I could choose to respond in ways of truth. It was life-changing without really changing my life. Then a challenge came along that I was unable to cope with and all my insights and ability to live in truth left me, and all I could do was watch. I returned to my reactions of incapability and inadequacy in an even more traumatized manner. Reading quotes like yours from Victor Frankl used to be so upsetting, because it seemed like a key ingredient of strength was needed to choose and it was a strength I lacked. But in recent years, it feels more like support, from wherever, allows the openness to see and to choose, and one of those supports for me is your journal and all the images and thoughts and connections it invokes. ❤️
I’ve felt the same way before--that I learned something life-changing, but it took a long time to sink in. Or I learn something, and then I have to relearn it. Thank you for sharing and reminding me of this, Kay ❤️
When my vibrant, saucy, beautiful daughter, Sara, at age 26 died after dancing with the chaotic uncertainty of cancer for 2.5 years, I stood on a fault line, the liminal space of the in-between two kingdoms…do I choose to join Sara in the world of the unknown, the world of the beyond, - which she now knew what was or wasn’t - or do I choose to keep breathing without her. Do I choose life or death? For 2.5 years I had held myself together: for her, for me and for the rest of our family, emotionally, financially and physically. That is what I could control when all else was uncontrollable. On the day she died, I had a choice to make. I chose life. Life that was forever changed, yet like Frankl discusses in his book, “Man’s Search For Meaning”, I knew I was the one who controlled how I was going to keep breathing. What colours I would choose to live within for the rest of my life.
I chose a Rainbow - all colours, shades and tones - the grays, the mutes and the brightest - because to me the rainbow represents HOPE. And as Sara once said, “We aren’t dead yet, and as long as we are alive, there is hope.” Hope to live. Hope to be absent of pain. Hope to find pleasure in the small joys as our own storyline unfolds as it will. (Hope for Jon’s opus “American Symphony” at Carnegie Hall to find a new performance date where Suleika can attend wearing her Behida designed charmeuse shirt dress.)
On this Mother’s Day, I celebrate Sara’s life and her impact on me and the larger AYA cancer community, where I first befriended Suleika, and which eventually delivered me, in all my ragged edges and a heart and soul full of rainbows, into this challenging and comforting group of creatives. To all of you, no matter what fault lines you are living upon - today, tomorrow or beyond - I send you a Rainbow full of love and gratitude.
I entered the 100 day project as a care giver and was gained strength, wisdom and comfort from both you and your mom. On day 15 I was diagnosed with cancer myself and am navigating this new world through a patient’s lens. Yikes. And then on Day 35 my brother-in-law passed from his battle with the disease. I am focusing on how I respond to the range of emotions and sadness, so I don’t waste tomorrow on not living my best life and celebrating the love that surrounds me. Thank you for sharing your guidance and love!💜
That book is one of my mum’s favourites and she has helped me find that space in between like you have done with so much grace and strength. I used to have a trigger reaction when stimulated and could never find that ‘pause’ where wisdom can be found and control regained. My PTSD was so severe. Now I find pause by texting mum the minute that stimulus occurs and sometimes just the act of telling someone what is causing me so much distress is enough for me to regain a sense of control and to feel grounded again and I am able to find power in the act of NOT responding, in just allowing myself to be with the unpleasant feelings but knowing someone is with me, that I am not alone, mum is just on the other line of the text or email. It is amazing how that ‘in between’ space, so seemingly small, has infinite and monumental power in shaping the moments that follow. And when I do respond, it is from a place of calm and inner peace and not a place of fear or anger.
This is such an appropriate prompt for where my own journey is at right now… dealing with health issues really requires me to consciously work hard to find the ‘in between’ and not respond from a place of past medical trauma but a place of present day strength and determination. You provide so much inspiration and mentorship to me as I navigate the challenges I face daily. I am so grateful to you for that.
My parents both just overcame their over battles with COVID so I am sending you and Jon so much healing energy and wishing for a speedy recovery. I hope the show is phenomenal when you do get a chance to go and I look forward to reading about it and hopefully getting to see some pictures!
Dearest Suleika. I have been thinking of you and Jon this week, (and always, quite frankly), as you navigate life's unexpected challenges, as well as continue to embrace life's joys amidst all the suffering and disappointments. You both inspire so much, and how deeply i long that the world can give you in return that which you both so generously and lovingly give to all of us!
yes..between stimulus and response! the space to just "let breathe" whatever it is we carry at any moment in time. to just "let breathe" whatever it is we carry at any moment in time...
with so much love and gratitude for you and Jon!!!!!!!
Janet I feel the same and am grateful for your eloquence in weaving together these beautiful words! Sending lots of good energy to the Jaouad-Batiste household today and always ❤️
Thank you so very much for your very loving note. Yes......so much good energy to the Jaouad-Batiste home, today and always. If only we could protect those we cherish from all forms of suffering!!!
I am very grateful for the isolation journals and have never been a writer and now I see I have something to add and help others and myself.
My true awakening came late in life and I live each day filled with miracles. The pure fact that I am here today is truly a wonder of modern medicine. How little I knew when I was a young girl who could not read until 4th grade. My calling of artistic talent kept me in school. I would move from class to class and get an artistic assignment from each teacher. No one really knew about autism and the spectrum but they knew I was talented in a very special way. I did all the drawings for Chaucers fables, which introduced me to myth. I created and photographed the yearbook by hand. I was happy. No one realized I had the lingering effects of Polio. I was an elite athlete. The wall came tumbling down when at 56 Polio put me in a wheel chair while attending law school. I was hard headed and would not accept defeat. My attitude was confrontational and angry. I got to travel as disabled, without a diagnosis until Mia Faro went to Congress and got post-polio as a diagnosis and permanente disability. Once I knew my condition I could research and was depressed that no doctor knew how to treat the painful dying nerves, except with high powered opioids. How could I finish law school, enjoy life all doped up. My husband was and is a truly an amazing man. He moved us to a one level home and then the miracle of Cannabis got me off opioids and out of a wheel chair. Grandkids were born, I graduated from law school, totally exhausted. We went to Bratislava for my grand-daughters birth. Happy times happen between unexpected tragic events. I believe it is the acceptance of tragedy as a challenge to be overcome as best I can that keeps me moving forward. The poliomyelitis virus keeps on trying to kill me off. First word recall became an issue. My photographic memory failed. I gained 100 pounds while on opioids. My heart was not functioning properly and my lungs filled up with fluid. I could no longer sleep without mechanical attachments and oxygen. My fight and flight was out of my control at the time wondering how long my body could keep going. When I was hospitalized for congestive heart failure 3 times. My husband would sleep under my bed on the linoleum floor. He did not trust the doctors. All my diagnostics were wrong. No heart attack. No check up for cancer. Oxygen in the low 80’s. They sent in the chaplain as requested. I knew I had to have a conversation with God. Not the usual Christian conversation but a Universal understanding of the purpose of my suffering. It was then I realized my Soul was intact my vehicle was suffering and needed a major tune-up. Off to Cedars Sinai hospital with a diagnosis of kidney cancer, which was wrong. Over to the breast clinic the week before Thanksgiving. The doctor was booked for 6 months out. My friend a giant contributor got me in to see the doctor. He operated the day before thanksgiving. This was a breast explant. Which showed cancer in the lungs early. A miracle. I was very weak and was truly saved from death by a wonderful woman who cooked, juiced me to health. She also knew about a special cancer center since regular treatment would kill me. Another miracle. We traveled and stayed in a hotel. My doctor invited us to stay at her home in Oceanside. My husband knew we needed to move to get the best care. He sold our beautiful home, closed his business and we found the perfect little home 6 miles from the beach and 45 minutes from the best doctors. A miracle. I was still wondering what I was moving towards. I was feeling better. Cancer in remission, lost 60 pounds and then more as I could start to walk on the beach. Law school taught me how to do medical research. Long story short, yesterday I had heart surgery, which was a new device to stop strokes called a watchman. New basket device put in the heart to catch clots. PP gave me 24/7 Afibulation. It was only a matter of time before a stroke would kill or disable me. Today is the 3rd day after surgery to repair the first surgery. I feel optimistic because my fear level from 300 days of mindfulness training has given me new perspective about my future. FEAR, is False Expectations of Artificial Reality. Using the breath, mindfulness (calm) and (Syntuition) have rewired my brain to see the beyond vehicle tune-ups to the reality that I can learn to control my response to uncertainty and live in the moment. It is the small moments that bring the greatest joy if we are open and accept that life never stops changing and we must savor the special moments in between tragedy with great courage, love and joy. Namaste
Dear Rikki: thank you oh so much for your writing. I am awed by your courage; I am aware it is not easy to come by or keep alive at times. But you do! The Be Here Now lesson is alive and well in your story. What an amazing reminder of what it is to have hope, to allow yourself to be supported.
Thank you for the kind words. I must remind myself to fully rest and heal. So many conditions are out of sight and mind. Wanting to do too much delays healing. Today I resolve to care for me and hold me in loving arms and thoughts. 🌺
A touch of Nature and wry commentary save me, again and again. The words of a West Texas neighbor come winging into my ears on the breeze. "Can't ride two ponies out of the barn. Pick one, and go have an adventure." Right. When I've been dumped in muck (again), I can remember that I chose this pony. Or I didn't choose because there were no other options.
Either way, it's a long walk home. I can hear the birds or review the hate in my heart. Choices, choices.
Thank you Suleika! I need you. This is so important to me. I have lost so many years because of how I have responded to stimuli; retreating into cocoon, burning bridges out of fear, isolating and being in my own world and thoughts. This is a reminder to me that we do have control, or, I like the way you phrase it, the agency to choose how we respond. I will definitely spend time writing and meditating on this. Thank you!
It's a startling image you write about, living on a fault line. I'm living there, too, and I'd like to move. A number of people around me are coming down with Covid now, as well. Enough, already!
But since I don't want to vacate my life and the ones I love, your reflections on agency are timely. When life piles on, I often find myself sliding into self doubt. In my 100-day challenge, I'm photographing something each day that gives me joy... even so far, I've found, this practice has given me a new kind of openness through the day to where I might find joy. I don't know how this works, but when I'm caught up in seeing something through the lens, I don't doubt myself. So helpful to notice!
I feel your disappointment about the postponement of Jon's debut: so sorry for one more disappointment! Healing blessings to both of you. I can't wait to see the outfits, when the concert is rescheduled.
As I get ready to be in hospital for a month for my bone marrow transplant, and things are not that easy at home with my teenage daughter going through a rough patch, it has been a balm to my soul reading your piece. Thank you and much love to you!
I’m sorry for the pile-on week and can only imagine the deflation of anticipation, the sadness, and the logistics nightmare. I needed to read this—now—because my version was Friday. I came down with Covid the morning before a reunion trip with my daughter to celebrate my husband’s and her dad’s birthday at his favorite getaway, the first without him after his sudden death. Really? This? Now? We made it work with FaceTime and videos and a family Zoom. It IS about what we can control. Despite loss, we can see the world through loving eyes. Today, I’ll write and paint and convalesce, inspired by this community.
Beautifully said. I also have found in that vein of thinking the importance of recognizing our own limitations, need to sleep etc… Why do things always seem worse in the evening? I think when we run out of energy we loose our ability to filter-sort of a mini sundown syndrome… resting or addressing physical pain is so important to restore our ability to tolerate changes.
Thank you for this and all your writing. My constant refrain to myself and others lately is: It is really hard being human. It’s the hardest thing we’ll ever do.
Thank you so much for sharing. This week has been A LOT. Feel so much for you and all that’s piling on: holding you, Jon & your families in my thoughts. You give such powerful form to the chaos of feelings and events and scary darkness. I needed to read your words. The 100 days work is so important. It’s a huge time for deep shifts in our priorities and connecting to our values. That’s why your words help our hearts sing. Treasure the simple things you can touch with your hands and heart. Keep going. And thank you 🙏🏽
Robert went into the hospital in October, 1985 close to death as we were told. He was found to have Cryptococcal Meningitis which granted him an AIDS diagnosis. Against all odds, he made it out of the hospital on Christmas Eve of that year. The second love of my life (guess who was first) was a 12 1/2 lb. Yorkie named Katie. To say I was besotted with Katie would not be too much, and everyone, included Robert, knew it, stating more than once, "I'd hate to be the one to have to tell you if something happened to Katie." Within a few weeks, I was able to retrieve Katie from a friend who was caring for her and bring her to the apartment Robert and I were sharing. One day, work kept me late and Robert felt strong enough to take Katie out to do her business. He took her to the back of the building (normally a safe space, though a couple of cars did park there) but did so without a leash. Robert heard a car coming and yelled for Katie to come - and rather than going to him, she took off, he too weak to chase after her. I spent the next several nights driving around looking for Katie, hanging up fliers, yelling out her name. I looked for Katie for a VERY long time, never finding her. On my way home from work, I realized that to survive the next year as Robert got sicker, I would need to instantly forgive him for taking her out without a leash or anything else that I was to feel, and, my heartbreak over Katie needed to be as private as possible. For the first time ever, I realized that forgiveness was a choice - which had a profound impact on the space that I thus created to continue tending to and loving Robert and deal with the blow back from a couple of people as a result of Katie's loss. Robert died on August 12, 1986. They are forever in my heart and much of what I came to do with my life came from that time and, to a smaller extent, that event.
In 1968, when I was just turning 8, my dad was stationed in Vietnam. My mom, (who hates to sweat and is NOT a fan of outdoor work) used to come outside with us (it was Summer) and while we would play, she would hand weed the cracks between the sidewalk pavers. Years later, I asked her why she did this, and she said, "There were so many things out of my control, but I could control those weeds, and doing so gave me the internal gift of reminding me that I still had influence...I could also hear your laughter, your joy, look up and see my three young daughters playing and know that I was going to provide the most stable, happy life I could for all of you in your father's absence". That stuck with me and I call it to mind, and to action, when things are out of my control. It was both things she did...the weeding and the noticing of joy.
What a gorgeous, powerful lesson your mother intuited and shared with you ❤️
Thank you! She is still living...her memory is challenged but her kindness and wisdom shine bright in her eyes always. She was that quiet wisdom, the hug when you need one, that light when all is dark.
In my 20s, I was able to come to a realization that my conditioned reactions to much of life were not necessary and that I could choose to respond in ways of truth. It was life-changing without really changing my life. Then a challenge came along that I was unable to cope with and all my insights and ability to live in truth left me, and all I could do was watch. I returned to my reactions of incapability and inadequacy in an even more traumatized manner. Reading quotes like yours from Victor Frankl used to be so upsetting, because it seemed like a key ingredient of strength was needed to choose and it was a strength I lacked. But in recent years, it feels more like support, from wherever, allows the openness to see and to choose, and one of those supports for me is your journal and all the images and thoughts and connections it invokes. ❤️
I’ve felt the same way before--that I learned something life-changing, but it took a long time to sink in. Or I learn something, and then I have to relearn it. Thank you for sharing and reminding me of this, Kay ❤️
When my vibrant, saucy, beautiful daughter, Sara, at age 26 died after dancing with the chaotic uncertainty of cancer for 2.5 years, I stood on a fault line, the liminal space of the in-between two kingdoms…do I choose to join Sara in the world of the unknown, the world of the beyond, - which she now knew what was or wasn’t - or do I choose to keep breathing without her. Do I choose life or death? For 2.5 years I had held myself together: for her, for me and for the rest of our family, emotionally, financially and physically. That is what I could control when all else was uncontrollable. On the day she died, I had a choice to make. I chose life. Life that was forever changed, yet like Frankl discusses in his book, “Man’s Search For Meaning”, I knew I was the one who controlled how I was going to keep breathing. What colours I would choose to live within for the rest of my life.
I chose a Rainbow - all colours, shades and tones - the grays, the mutes and the brightest - because to me the rainbow represents HOPE. And as Sara once said, “We aren’t dead yet, and as long as we are alive, there is hope.” Hope to live. Hope to be absent of pain. Hope to find pleasure in the small joys as our own storyline unfolds as it will. (Hope for Jon’s opus “American Symphony” at Carnegie Hall to find a new performance date where Suleika can attend wearing her Behida designed charmeuse shirt dress.)
On this Mother’s Day, I celebrate Sara’s life and her impact on me and the larger AYA cancer community, where I first befriended Suleika, and which eventually delivered me, in all my ragged edges and a heart and soul full of rainbows, into this challenging and comforting group of creatives. To all of you, no matter what fault lines you are living upon - today, tomorrow or beyond - I send you a Rainbow full of love and gratitude.
Very beautifully stated. Brought tears to my eyes and love of rainbows filled my heart.
Thank you. ❤️🌈❤️
Glad you are here.
Thank you. ❤️🌈❤️
Sending you puffs of love to get on when you need comfort. I send you strength to keep choosing and finding some joy in life.
Thank you. 🌈🌷
I entered the 100 day project as a care giver and was gained strength, wisdom and comfort from both you and your mom. On day 15 I was diagnosed with cancer myself and am navigating this new world through a patient’s lens. Yikes. And then on Day 35 my brother-in-law passed from his battle with the disease. I am focusing on how I respond to the range of emotions and sadness, so I don’t waste tomorrow on not living my best life and celebrating the love that surrounds me. Thank you for sharing your guidance and love!💜
Sending you so much love and wishes for comfort and strength ❤️
so much at once for you! healing thoughts and blessings from another caregiver in the community
Love and light to you, Debra. Keep allowing love in as you can.
That book is one of my mum’s favourites and she has helped me find that space in between like you have done with so much grace and strength. I used to have a trigger reaction when stimulated and could never find that ‘pause’ where wisdom can be found and control regained. My PTSD was so severe. Now I find pause by texting mum the minute that stimulus occurs and sometimes just the act of telling someone what is causing me so much distress is enough for me to regain a sense of control and to feel grounded again and I am able to find power in the act of NOT responding, in just allowing myself to be with the unpleasant feelings but knowing someone is with me, that I am not alone, mum is just on the other line of the text or email. It is amazing how that ‘in between’ space, so seemingly small, has infinite and monumental power in shaping the moments that follow. And when I do respond, it is from a place of calm and inner peace and not a place of fear or anger.
This is such an appropriate prompt for where my own journey is at right now… dealing with health issues really requires me to consciously work hard to find the ‘in between’ and not respond from a place of past medical trauma but a place of present day strength and determination. You provide so much inspiration and mentorship to me as I navigate the challenges I face daily. I am so grateful to you for that.
My parents both just overcame their over battles with COVID so I am sending you and Jon so much healing energy and wishing for a speedy recovery. I hope the show is phenomenal when you do get a chance to go and I look forward to reading about it and hopefully getting to see some pictures!
Love to you Susu
Xo
Dearest Suleika. I have been thinking of you and Jon this week, (and always, quite frankly), as you navigate life's unexpected challenges, as well as continue to embrace life's joys amidst all the suffering and disappointments. You both inspire so much, and how deeply i long that the world can give you in return that which you both so generously and lovingly give to all of us!
yes..between stimulus and response! the space to just "let breathe" whatever it is we carry at any moment in time. to just "let breathe" whatever it is we carry at any moment in time...
with so much love and gratitude for you and Jon!!!!!!!
Beautifully stated!
Thank you , Dear Rikki! So very heartfelt. .
Janet I feel the same and am grateful for your eloquence in weaving together these beautiful words! Sending lots of good energy to the Jaouad-Batiste household today and always ❤️
Thank you so very much for your very loving note. Yes......so much good energy to the Jaouad-Batiste home, today and always. If only we could protect those we cherish from all forms of suffering!!!
I am very grateful for the isolation journals and have never been a writer and now I see I have something to add and help others and myself.
My true awakening came late in life and I live each day filled with miracles. The pure fact that I am here today is truly a wonder of modern medicine. How little I knew when I was a young girl who could not read until 4th grade. My calling of artistic talent kept me in school. I would move from class to class and get an artistic assignment from each teacher. No one really knew about autism and the spectrum but they knew I was talented in a very special way. I did all the drawings for Chaucers fables, which introduced me to myth. I created and photographed the yearbook by hand. I was happy. No one realized I had the lingering effects of Polio. I was an elite athlete. The wall came tumbling down when at 56 Polio put me in a wheel chair while attending law school. I was hard headed and would not accept defeat. My attitude was confrontational and angry. I got to travel as disabled, without a diagnosis until Mia Faro went to Congress and got post-polio as a diagnosis and permanente disability. Once I knew my condition I could research and was depressed that no doctor knew how to treat the painful dying nerves, except with high powered opioids. How could I finish law school, enjoy life all doped up. My husband was and is a truly an amazing man. He moved us to a one level home and then the miracle of Cannabis got me off opioids and out of a wheel chair. Grandkids were born, I graduated from law school, totally exhausted. We went to Bratislava for my grand-daughters birth. Happy times happen between unexpected tragic events. I believe it is the acceptance of tragedy as a challenge to be overcome as best I can that keeps me moving forward. The poliomyelitis virus keeps on trying to kill me off. First word recall became an issue. My photographic memory failed. I gained 100 pounds while on opioids. My heart was not functioning properly and my lungs filled up with fluid. I could no longer sleep without mechanical attachments and oxygen. My fight and flight was out of my control at the time wondering how long my body could keep going. When I was hospitalized for congestive heart failure 3 times. My husband would sleep under my bed on the linoleum floor. He did not trust the doctors. All my diagnostics were wrong. No heart attack. No check up for cancer. Oxygen in the low 80’s. They sent in the chaplain as requested. I knew I had to have a conversation with God. Not the usual Christian conversation but a Universal understanding of the purpose of my suffering. It was then I realized my Soul was intact my vehicle was suffering and needed a major tune-up. Off to Cedars Sinai hospital with a diagnosis of kidney cancer, which was wrong. Over to the breast clinic the week before Thanksgiving. The doctor was booked for 6 months out. My friend a giant contributor got me in to see the doctor. He operated the day before thanksgiving. This was a breast explant. Which showed cancer in the lungs early. A miracle. I was very weak and was truly saved from death by a wonderful woman who cooked, juiced me to health. She also knew about a special cancer center since regular treatment would kill me. Another miracle. We traveled and stayed in a hotel. My doctor invited us to stay at her home in Oceanside. My husband knew we needed to move to get the best care. He sold our beautiful home, closed his business and we found the perfect little home 6 miles from the beach and 45 minutes from the best doctors. A miracle. I was still wondering what I was moving towards. I was feeling better. Cancer in remission, lost 60 pounds and then more as I could start to walk on the beach. Law school taught me how to do medical research. Long story short, yesterday I had heart surgery, which was a new device to stop strokes called a watchman. New basket device put in the heart to catch clots. PP gave me 24/7 Afibulation. It was only a matter of time before a stroke would kill or disable me. Today is the 3rd day after surgery to repair the first surgery. I feel optimistic because my fear level from 300 days of mindfulness training has given me new perspective about my future. FEAR, is False Expectations of Artificial Reality. Using the breath, mindfulness (calm) and (Syntuition) have rewired my brain to see the beyond vehicle tune-ups to the reality that I can learn to control my response to uncertainty and live in the moment. It is the small moments that bring the greatest joy if we are open and accept that life never stops changing and we must savor the special moments in between tragedy with great courage, love and joy. Namaste
Dear Rikki: thank you oh so much for your writing. I am awed by your courage; I am aware it is not easy to come by or keep alive at times. But you do! The Be Here Now lesson is alive and well in your story. What an amazing reminder of what it is to have hope, to allow yourself to be supported.
Thank you for the kind words. I must remind myself to fully rest and heal. So many conditions are out of sight and mind. Wanting to do too much delays healing. Today I resolve to care for me and hold me in loving arms and thoughts. 🌺
A touch of Nature and wry commentary save me, again and again. The words of a West Texas neighbor come winging into my ears on the breeze. "Can't ride two ponies out of the barn. Pick one, and go have an adventure." Right. When I've been dumped in muck (again), I can remember that I chose this pony. Or I didn't choose because there were no other options.
Either way, it's a long walk home. I can hear the birds or review the hate in my heart. Choices, choices.
Thank you Suleika! I need you. This is so important to me. I have lost so many years because of how I have responded to stimuli; retreating into cocoon, burning bridges out of fear, isolating and being in my own world and thoughts. This is a reminder to me that we do have control, or, I like the way you phrase it, the agency to choose how we respond. I will definitely spend time writing and meditating on this. Thank you!
Ah the escape route! Don’t we all want to run and hide at times?? We DO have control..peace my friend! Jody from Florida “find the joy”
It's a startling image you write about, living on a fault line. I'm living there, too, and I'd like to move. A number of people around me are coming down with Covid now, as well. Enough, already!
But since I don't want to vacate my life and the ones I love, your reflections on agency are timely. When life piles on, I often find myself sliding into self doubt. In my 100-day challenge, I'm photographing something each day that gives me joy... even so far, I've found, this practice has given me a new kind of openness through the day to where I might find joy. I don't know how this works, but when I'm caught up in seeing something through the lens, I don't doubt myself. So helpful to notice!
I feel your disappointment about the postponement of Jon's debut: so sorry for one more disappointment! Healing blessings to both of you. I can't wait to see the outfits, when the concert is rescheduled.
So happy to hear that the project has been an opening and source of joy, even on the fault line ❤️
Great idea!
As I get ready to be in hospital for a month for my bone marrow transplant, and things are not that easy at home with my teenage daughter going through a rough patch, it has been a balm to my soul reading your piece. Thank you and much love to you!
I’m sorry for the pile-on week and can only imagine the deflation of anticipation, the sadness, and the logistics nightmare. I needed to read this—now—because my version was Friday. I came down with Covid the morning before a reunion trip with my daughter to celebrate my husband’s and her dad’s birthday at his favorite getaway, the first without him after his sudden death. Really? This? Now? We made it work with FaceTime and videos and a family Zoom. It IS about what we can control. Despite loss, we can see the world through loving eyes. Today, I’ll write and paint and convalesce, inspired by this community.
Beautifully said. I also have found in that vein of thinking the importance of recognizing our own limitations, need to sleep etc… Why do things always seem worse in the evening? I think when we run out of energy we loose our ability to filter-sort of a mini sundown syndrome… resting or addressing physical pain is so important to restore our ability to tolerate changes.
I came across a little bit of humor yesterday--that you should never trust how you feel about your entire life past 9pm 😂
Or on a workweek Friday!
Absolutely, sleep the best decision!
Thank you for this and all your writing. My constant refrain to myself and others lately is: It is really hard being human. It’s the hardest thing we’ll ever do.
Thank you so much for sharing. This week has been A LOT. Feel so much for you and all that’s piling on: holding you, Jon & your families in my thoughts. You give such powerful form to the chaos of feelings and events and scary darkness. I needed to read your words. The 100 days work is so important. It’s a huge time for deep shifts in our priorities and connecting to our values. That’s why your words help our hearts sing. Treasure the simple things you can touch with your hands and heart. Keep going. And thank you 🙏🏽
Robert went into the hospital in October, 1985 close to death as we were told. He was found to have Cryptococcal Meningitis which granted him an AIDS diagnosis. Against all odds, he made it out of the hospital on Christmas Eve of that year. The second love of my life (guess who was first) was a 12 1/2 lb. Yorkie named Katie. To say I was besotted with Katie would not be too much, and everyone, included Robert, knew it, stating more than once, "I'd hate to be the one to have to tell you if something happened to Katie." Within a few weeks, I was able to retrieve Katie from a friend who was caring for her and bring her to the apartment Robert and I were sharing. One day, work kept me late and Robert felt strong enough to take Katie out to do her business. He took her to the back of the building (normally a safe space, though a couple of cars did park there) but did so without a leash. Robert heard a car coming and yelled for Katie to come - and rather than going to him, she took off, he too weak to chase after her. I spent the next several nights driving around looking for Katie, hanging up fliers, yelling out her name. I looked for Katie for a VERY long time, never finding her. On my way home from work, I realized that to survive the next year as Robert got sicker, I would need to instantly forgive him for taking her out without a leash or anything else that I was to feel, and, my heartbreak over Katie needed to be as private as possible. For the first time ever, I realized that forgiveness was a choice - which had a profound impact on the space that I thus created to continue tending to and loving Robert and deal with the blow back from a couple of people as a result of Katie's loss. Robert died on August 12, 1986. They are forever in my heart and much of what I came to do with my life came from that time and, to a smaller extent, that event.
p.s. I often give Frankl's book as a gift.