160 Comments
Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley

I spent so many years, moments, awake but not living, caught in the garbage loop of anxiety and panic. This loop worked its way into my dreams as a bear, a huge bear chasing me, feeling the hot breath on my neck running, running, waking in a puddle of sweat. A few years ago, I had the courage to turn around in the dream and just scream, "What? What do you want from me?" The bear replied, " I am here to protect you, but you kept running from me." Wow, mind blown!! I have never had that dream again and finally faced my debilitating anxiety with a somatic/trauma trained therapist and my daily "Yoga to Calm Your Nerves." All because I had the courage to turn around. (Can't wait to view your shared masterpiece "American Symphony.")

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So very powerful. How often the thing we need most, to face our fears, repels us with the unknowing. This is what I hear Suleika saying about the documentary. Surrendering. Being willing to be led. Mary, your dream will stay with me today. And I thank you.

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I thank you, Jacqueline for "seeing" me. I love the way you phrased this, "How often the thing we need most, to face our fears, repels us with the unknowing." This will stay with me. Thank you.

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Nov 26, 2023Liked by Suleika Jaouad

Yes, Mary. I have read that we should turn and ask our “bear” what do you want from me? I am so glad that moment was transformative for you. It is incredibly difficult to confront our fears and to search out help to ease our way.

Thank you for sharing.

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Thank you, Pat! Yes, yes, it so difficult to confront fears. (still is)

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Nov 26, 2023Liked by Suleika Jaouad

I love this, "I am here to protect you, but you kept running from me."

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Thank you, Liz. It was a profound moment when I woke and remembered this.

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Nov 27, 2023·edited Nov 27, 2023

I was telling my husband, David, about this. He said it could mean that the aggressive side from within can be protective. I thought that was an interesting perspective and worth sharing. Best to you,

Liz

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Oh, Liz, thank you! I love different perspectives and your husband's take on my dream seems to hit the mark with me.

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Nov 26, 2023Liked by Suleika Jaouad

What a remarkable dream and experience, Mary! I've often been afraid of things/experiences that will help me if I let them.

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Thank you, Jeannine. This is so beautiful, "I've often been afraid of things/experiences that will help me if I let them." Wise, wonderful advice and I will take it to heart.

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Mary, thank you!! such a powerful sharing/post. It is amazing how dreams can connect to our reality to get us to "listen". I had a dream just last night of darkness falling all around me, I wanted to run, to figure it all out and just change the reality. Then today, when I awoke, it was bright and I thought "I need to get out, to walk, to do. Yet, my body said, rest and be. So, i went towards feeling/being which led to a day at home, sipping tea, and reading the novel, :The All Girls Filling Station" by Fannie Flagg.

So, I didn't allow darkness into my day, and realized that I can stay in my body and still change reality for a moment, to give my mind and body rest, and find pleasure in tea, reading a good book and making space to just be. Thank you for your response as it pushed me to realize that I did not "waste a day" but "embraced the message" to breathe, be.

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Oh, Karen! This is so powerful. "I didn't allow darkness into my day..." I am reading this early, early in the morning and (it is dark out) and I woke with a darkness. Your message is now so powerful for me.

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Thanks! Funny as I read this now I see that maybe I did allow the day to be dark, in terms of this need to always be “in sunshine”. I was able to be inside, in shadows and light. I love how these prompts and responses give us pause to reflect on our inner life. Wishing you a blessed day.

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Good for you Mary, I read Kristen Neff's book Fierce Self Compassion (highly recommend) and she suggests choosing something that you see as your protector and I too chose a bear. Mine looks a bit like the Mama Bear in the Charmin commercial.

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Oh, I love this, Lisa! I will read your book recommendation and thank you so much!

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Wow! You faced your fears in your dream and turned the dear around. That takes strength!

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The fear not dear.

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Or, perhaps it was my Dear Fear. Thank you. I still struggle, but I'm okay.

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Wow, I agree with Jacqueline. What a powerful dream. And a powerful moment when your subconscious made that choice to confront your fears with curiosity.

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Thank you, Abby. Love this, "confront your fears with curiosity."

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Wow! How powerful. How symbolic.

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Thank you, William. I thought so too! The next day, I made a linoleum block of the dream. Now, if I could just find it!

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I hope you find it. I would love to see the print you make from it - if that is in your plans. If I had a bear supporting me, I would have no worries.

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Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley

Suleika, Carmen, our beautiful community, usually after reading these stories on Sunday mornings and then the prompt, I have no problem with writing what was illuminated within me. These last two weeks I’ve had nothing to write, and almost began judging myself, but I immediately stopped the judgement and realized I’m not a machine, I could receive great joy in reading what others have written and leave myself alone. Allowing myself to participate by reading the beautiful writings of what other people have written. Last week I wrote something and deleted it, and this week no words after reading and the prompt. At first I felt sad, that I wasn’t enough, that I had dried up, and then I just stopped my ego, and was able to feel gratefulness that I could read all of the beautiful writings, and that I would be able to see the beautiful love story Suleika and Jon have created in “American Symphony Symphony”. I am human, I am enough, and will always be a participant in this community one way or another. Sometimes I just need to be quiet and take in all the beauty, pain and sadness. Thank you community for all that I receive.

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Love this moment of awareness, Sherri, and that you refrained from judgement. The words will come ❤️

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I have gone through that too! Thinking that in order to justify being part of this community I needed to offer comments every time...but you are so right...I also find such joy feeling the bonds of this community by simply sitting with a cup of coffee and reading the comments of other community members....receiving what others give here...such a lovely place.

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Bravo!

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So well said. Thank you!

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I totally understand. Last Sunday I had nothing to add and just read some others comments.

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Oh how I love this, how you express so well what I also feel. "I'm not a machine". Perfect. I'll remember this. Thank you.

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Nov 26, 2023Liked by Carmen Radley, Suleika Jaouad

I didn’t know it would be excess

Spending four hours with friends on Thanksgiving.

Good friends, close friends, understanding friends.

Picked me up, drove me to their home (something I could easiiy have done on my own in a better time);

They did all the preparing and cooking.

All I had to do was sit in the comfortable car and deliver the pie I hadn’t even baked, but had bought from a local bakery on my way home from one medical appointment or another.

I didn’t know it would be excess to engage so fully

To talk and laugh and be together, just the three of us

That the next days I’d be flattened by the simple pleasures of being together

It had been many months since I’d been at their home

Recovering from whatever it was that hit me in early Spring

Talk about excess: that’s what I’d call the endless tests with unpronounceable names, and blood draws, and xrays, and mris, that left us with as many questions as answers.

It wasn’t that long ago that excess had a different meaning: walking too far with my dog on a beautiful day – spending that extra hour I knew I should not spend in the garden as the wind came up

Things I could control if I cared to, which I didn’t.

Now, in unknown territory, how can I know what is too much before it exacts its toll?

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Your words are so honest and so profound. You seem to be living in solid awareness of your experience during this strange and new journey. It takes courage to just let things unfold and see where it takes you. Stay curious, continue to drop judgements and please nurture and care for yourself as you would for a dear dear friend. Wishing you the best!

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So beautifully said, Heidi. I have a close relative who is in the nowhereness that is a search for a diagnosis. The fear of not knowing and maybe also not wanting to know must be exhausting. I’m glad the simple pleasures were a salve to you this Thanksgiving holiday.

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Wow, Heidi. This makes me just want to wrap you in love, a fabulous plush blanket and take it all away. My daughter suffers from a myriad of illnesses and your question, "How can I know what is too much before it exacts its toll?" is one she grapples with as well. No amount of love, or plush blankets brings the answer.

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You will know. When you need to know. Wisdom is a gift we learn, so very often, my stumbling along, by doing and doing what we think we should. I can hear the longing you hold for answers. I will believe for you, that they will come. Until then, kiss your dog. I send you love.

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Nov 26, 2023·edited Nov 26, 2023Liked by Carmen Radley, Suleika Jaouad

Dear Suleika, fellow Substacker here and just went to see your film American Symphony in a little NYC theatre (I am visiting from London for a few days)— and wow, what a beautiful beautiful gift. Such a generous insight into you both especially after enjoying your memoir so much. I cried but it was also so funny. Afterwards I walked across Washington Square Park in the Autumn sunshine and listened to a man play the piano for a while. 🥰🥰🥰 Thank you for your work. xoxoxo

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Thank you so much Emma!

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Nov 26, 2023·edited Nov 26, 2023Liked by Carmen Radley, Suleika Jaouad

I have been writing about a recently discovered penchant I have had for "running" in my life. Looking back, it seems I had always been running away from one thing or another my entire life. I can look back and make a list of the ways by decade and am finally at a place in life where I have stopped running and am learning to trust and be still. There is one decade, in my early forties, when I had just come out on the other side of many years of suffering from terrible anxiety and depression and I felt free. I then filled every moment with physical activity...wind surfing (the wind in my face!) sailing, mountain biking, and lifting weights. When I think of doing something to excess, I remember when alone, I did three of these things within the hours of one fine day. I went to the lake and spent several hours windsurfing, had to self-rescue at one point and drag myself, exhausted up onto a bank a quarter mile from where I started, then drove home, grabbed my bike, and off I went, only stopping when I got so tired that I couldn't peddle up a small hill, then, drove over to the beach, where I put on my fins and went body surfing....ending up being pulled under and dragged face first under a wave along the sandy ocean bottom and tossed out onto the dry sand like Jonah being spit out of the whale's mouth. Later, after walking into my apartment with bike, fins, and board, a neighbor said to my daughter, "Does your mother ever stop?" I thought, "I need to stop." I felt like I was trying to excise demons by all the activity and I had gotten addicted to the process. I knew I was taking my power back after so many years of being stuck and afraid, but it was too much. "I could kill myself doing this," I thought. I settled down quite a bit after that day, and it's probably why I am still here to tell the story. You better believe my husband and I are signed up to watch American Symphony as part of this community and I CANNOT WAIT!

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Stopping and pausing are good! It adds quality to music and the song of our life!

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Yes! My personality is one in which I question how productive I have been at the end of every day but I'm fighting against that these days and "stopping to smell the roses."

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Wow. I can relate to this on so many levels, Linda. I, too, have been running most of my life. Running into walls, jumping up, and doing it again. As if I could outrun fear, grief, sadness, not enoughness. The walls kept trying to teach me, but I would not, could not, listen. Now, finally, and with the help of this community, I am learning how to be. Be with all of it. Holding it all in one hand. Thank you for sharing your story. It helped me a lot.

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I can appreciate your sharing this and dare to say that the same has been said of me. My sprint ran something like this too, pack to go to work in Japan but first run twenty miles to train for a marathon, go to breakfast social with running club, come home, play with our son, take off again, TJ Maxx run, back home, solve the world’s problems by phone (family diplomat), socialize for the evening, late to bed, up wickedly early, board flight…. And so on and so on. Always in a state of fight or flight from parenting that had me running to escape family drama.

I am so thankful for my husband who has been my solid and calm rock by my side for 35 years now. and for my latently developed self awareness to acknowledge that it is ok to be still and compassionate enough to self to rest. Here is to us.

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Yes...a latently developed self awareness...and forgiveness for my past self. Essential!

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Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley

I have, after six years, begun to sleep. To sleep for 4, 5 or bless me, maybe 6 hours in a row. It is a long story of a heart break that my body and mind could not absorb. Anxiety attacks, full body shakes, black outs, and then, insomnia. I am finding my way back to sleep without the help of pharmaceuticals. (Please note, I believe in science and medicine!😊) Even so, being an introvert who loves meaningful conversation and beautiful music, I must measure out these pleasures. Being an audio learner, everything sticks!

On another note, last night as I was turning out the lights, watching the beautiful snow fall, I thought, “ Oh! Tomorrow is Sunday. What glorious and thought provoking missive will Suleika bring us? What whole hearted stories will be shared?”

More than anything else, I long for a place to belong. For a place at the table. To be known. The Isolated Journals is an answer to my prayer. Thank you, Suleika. Thank you, friends.

Blessings all over the place to you!

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This beautiful, beautiful comment. ❤️ I'm so glad you're finding your way back to sleep, and that you've found this place to belong.

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I'm right with you, science, medicine , community through The Isolation Journals and the absolute relief when you can sleep again. "Yes" to the Sunday prompt too!

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I love and relate to wanting “a place at the table” ❤️ This community doesn’t size us up by how sick or well we are to feel a part of it. The welcome is profound, isn’t it?!

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It is a rare, welcome, indeed. I think, that if by some miracle we were ever to have a flesh and blood reunion, there would be an awful lot of love. We are, by our vulnerable sharing, by Suleika’s transparency, laying a foundation for acceptance and friendship. It has been, IS, a great gift. At my age, it is difficult to make new “ old” friends. As in, true connection. I feel it happening here. We are blessed!

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Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley

I can’t wait to see it. Full transparency: I started reading your NYT columns when my husband was suffering from an ultimately fatal neuroendocrine cancer and your take on living with cancer felt so relevant to us. Soon after losing my husband, my dad, who had MDS, transitioned to AML and died two years later. My 34-year-old daughter was actually diagnosed with MDS at age 15, and is monitored but remains healthy (me and my other kids do not have it-go figure). So I feel very invested in your struggles and am so very, very thrilled that you are not only surviving, but thriving. You sharing your experiences matter so much ❤️❤️❤️

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Sending love to you, Seba, for all that you've endured. I'm so glad you're here. ❤️

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Here's to "not only surviving, but thriving." So, so well said, Seba.

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A little trivia: Robert Frost taught here at the University of Michigan from 1921 to 1926. He was the University’s first fellow in the creative arts, and initially received a $5,000 stipend for eight months (the equivalent of $85,000 today). He was an immediate hit, and invited back. The students liked him so much that he was honored at a Michigan football game. Frost was known for his nocturnal wanderings. He lived on Pontiac Trail, about a mile from downtown, and would walk the streets alone overnight, I guess pondering ideas. He became well known to the police, who would spot him and leave him be. The desk he used here is in the Undergraduate Library.

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Delightful!

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Love this bit of Frost trivia. I do love his descriptive images of nature. His was the very first poet I was introduced to at a young age by my parents. I have heard, however, he was a bit of a curmudgeon!

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Love this, Micheline!

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Thanks for sharing that morsel of history, Micheline!

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You’re welcome! I found his desk by accent. I was invited to an opening reception for the Orson Welles archive (his family donated it to U-M) and spotted his desk on display.

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I imagine his wandering the streets through the night was a walking meditation.

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Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley

My second career as a marriage and family psychotherapist is slowly coming to an end. I think about all the people I sat with, hurting and desperate for understanding and love. I have consumed so many, many stories. I want to do more with what I have learned from these stories I was given. But I am satiated. Considering the word, surfeit, helped me to realize that I need to live a bit more away from the stories before I am able to do more with what I have learned.

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A surfeit of stories. ❤️

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I left my career as a substance abuse counselor with severe compassion fatigue/burnout. I relate so much to "consuming stories." Early in my career, I had so much energy to listen, and I could feel that fading over the years as my self care dwindled. It took me years to recover and there are still parts of me that resist caregiving. All the best to you.

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Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley

Yes Suleika & Jon & cyber friends,

So looking toward to American Symphony; leaving work early to view it!

Up in the middle of the night unable to sleep here down my dirt road in the woods of Southern Oregon...

It is dark; the almost full moon that shone so brightly is gone now.

There is total silence, but my mind is reeling...

About “the not knowing“ about balancing the recognition & acceptance of that. Always teeter-tottering...

Pondering balance on so many levels; work & its all encompassing drive... health & its demand for attention too.

Robert Frost and his too many apples resonates. Plans & projects so big they fill many barrels of joy and exhaustion simultaneously...

It is 5am here... I guess I will start my day...💜Deb

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Cyber Friends! ❤️

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I love what you wrote about the juxtaposition of recognition and acceptance ... teeter-tottering is a perfect word and image. That see-saw can be both exhilarating and exhausting for sure! Have a beautiful day!

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Yes exhilarating and exhausting at the same time!

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Nov 26, 2023Liked by Carmen Radley, Suleika Jaouad

Suleika, I was honored to see this showing at the 92ndStY and it is simply stunning. Breathtaking. Heart warming. Loving. And heartbreaking. A true love story. Thank you both for your generosity of your immense vulnerability and time. And frankly truth. Those 3 things are not shared often. So thank you. I cannot wait to watch it again. And again. And again. Because I am sure between all the words, smiles, glances and sighs I will catch something new every time xoxoxo Di

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That is so true. I’ve watched it three times so far, and each time there is something new I notice, or more to think about. Understand why Suleika/Matt said, It could have been a 1,000 different stories.” Just have to be sure I have tissues nearby when I watch (and do have many smiles/laughter as well).

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Do Not Go Gentle

In a foggy freezer, hot desire unfolds,

Whispering pleasures, songs of gold.

Do not go gentle into that good Häagen-Dazs.

Spoon in hand, licking creamy delight,

If this is wrong, I don’t want to be right,

Eyes roll back, savoring Häagen-Dazs.

Chocolaty waves dance a midnight rage,

Symphonies of ecstasy, our tongues engage.

I do not go gently into my Häagen-Dazs.

Guilt & pleasure, like rabid dogs,

Howling flavors in moonlit fogs,

Oh, my heart lingers on you, Häagen-Dazs.

In hard quiet hours, dreams softly explore,

A bitter yarn spun, a sweet encore.

Go, go gentle into that good Häagen-Dazs.

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Talk about surfeit! :)

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Brilliant ode to Haägen-Dazs!

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Awesome! So beautiful I can taste it. Thanks!

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I love this, John. Soooo yummy!

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Haha!!! I loved this, as I drink my coffee with vanilla Hagen Dazs….

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Nov 26, 2023Liked by Carmen Radley, Suleika Jaouad

Adrenaline has always been my seductress. I have chased it's elusive shadow for most of my life. To ski that ultimate Black Diamond run, volunteer for the extremes of duty in the military, climb that vertical wall of a mountain in Colorado, dive out of planes or deep into the soul of the ocean, that drug of adrenaline has always intoxicated me.

Even now, into my sixties, that seductive dance of an adrenaline high never leaves my side. There is a joy in the fear-sweat of standing on the precipice, falling forward into an extreme.

Even the diagnosis of metastatic prostate cancer feeds that craving for more of the adrenaline drug. The not knowing, sitting in the abyss of dark feelings in the middle of the night, well into dawn, embracing the savage fear of not knowing.

I still chase that adrenaline rush. With the situation in Gaza unfolding, I desperately look for a way to parachute into the middle of it all (Clarissa Ward is my Patron Saint of extreme journalists!).

That need for more and more and more never goes away.

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Nov 26, 2023Liked by Suleika Jaouad, Carmen Radley

I spent a few years as a founding member of a kibbutz. I was assigned to work in a series of monotonous jobs. It never failed that whatever job I was doing I would dream about it later. If I had been picking oranges I would dream about picking oranges. If I had been collecting rocks and boulders from fields that had not been planted for years I would see fields of rocks in my dreams. If I was on kitchen duty I would dream of fried eggs.

In my professional life I sometimes dream of patients with problems that are so deep seated I can not do much to alleviate them or of patients that are verbally abusive and threatening.

I have learned that watching the news too much is not helpful to my mental health, but sometimes I cannot help myself and I find myself following the news too closely. Right now my dreams are occupied by the hostages and prisoners Israel and Hamas are exchanging.

I would love to have the skills to handle the issues of the day during the day so that night can reserved for dreams of frolicking in a field of wild flowers or some other pleasant pursuit.

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Have you read Marc Epstein’s book “The Zen of Therapy”? He speaks beautifully about processing our clients issues and outcomes. Not for the faint of heart!

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Will look for it.

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Havening could help. Very self soothing.

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Nov 26, 2023Liked by Suleika Jaouad

Your words about isolation come at the most perfect time. I have been struggling with my three teenage stepsons, along with just feeling my regular old depressed (thanks, brain chemistry), which results in overwhelming sadness for me. I’m trying my best to be grateful for all the wonderful things in my life, but it’s been incredibly challenging for me. Helps so much to know I’m not alone in this. And I’m so looking forward to watching American Symphony and celebrating your and Jon’s love. Thank you from the bottom of my heart for sharing all of this with us. You are loved. ❤️

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You're not alone. ❤️

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You are not alone! ❤️

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Nov 26, 2023Liked by Carmen Radley, Suleika Jaouad

Living in the world of uncertainty and sharing the most intimate moments of one’s feelings all under the leering camera’s eye, for months at a time...yes, to all that you have said, Suleika. I experienced that while we were filming my 23 year old daughter Sara’s “living with cancer” story. Our director was wise, kind and compassionate always giving us permission to turn off the cameras if Sara needed to process new information - like during the final months of shooting the doc when a scan revealed her cancer had recurred - no fairy tale ending - AND Sara decided to continue to finish the film - which has comforted and changed thousands of young adult lives. Like you and Jon, Sara felt compelled to share her story to help others feel less alone during such a life transforming experience.

It takes humongous courage and a huge heart to share personal intimate stories so the world can be a kinder place to live, love and breathe in. Not everyone has the ability to do this. Thank you, Suleika and Jon (and your director, Matthew Heineman) for sharing your love story with the world. You make it a better place to live within.

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Thank you Pat. ❤️

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Counting the hours now…

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