Hello Suleika - I just wanted to reach out in solidarity. Similar to you, I have relapsed AML after a transplant and am currently in hospital, having more chemo and battling an infection. I feel and know the uncertainty, the realisation that the shape of my life does not look how I imagined it might. The plan for my treatment is unfolding, but no-one is sure exactly what happens next. It’s hard to manage at times. Sending you so much love and strength from London - Claire x
P.S. the list has inspired me to get out of my hospital bed and have a hot shower x
I’m a paraplegic. I have been for 38 years. Sometimes my limits and losses hit me like a hammer; I’ll never wiggle my toes in beach sand; I’ll never climb the Roman Steps or the Eiffel Tower; I’ll never dance again.
Although I deploy “Compare and despair” and work to count my blessings, I can still be smacked with a moment of grief and jealousy when I see a photo of someone doing something physical that I would love to do. Whoops, did I write “a moment?” Make that “An utter meltdown of mammoth proportions.” I snap at people I love and then I feel terribly guilty.
Nature saves me. The silliness of the grosbeak twirling on the suet feeder;, the clear, stained-glass yellow of big-leaf maples against a brilliant blue sky; the bizarreness of finding a purple or navy-blue mushroom growing near our home — and Pontificating saves me — I write, I lecture, I interrupt people and say, “Actually, . . . “ (Thank God it is impolite to clock a paraplegic. There’s times I deserve it).
Grief and gratitude are the swirling yin-yang of my life. I live each day on a knife’s edge. Will I get adequate sleep? Will my body ooze/bruise/betray me if I try an excursion? Yes’s and No’s pop up with great unpredictability. It’s exhausting to experience and exhausting to explain.
Then the phone chimes and my neighbor says she’s free for a bit. I strap on my leg braces and clunky orthopedic shoes and heave myself upright on awkward forearm crutches. We’re about to spend the next half hour peering under the bushes that line our short, rural road. We’re documenting the fungi in our neighborhood.
We’re up to about 200 species so far. It’s important to look frequently because many species will produce fruiting bodies that are out for just a day or two. The mushrooms are bizarre, adorable and incredibly interesting. Beauty, wonder and delight right there on the forest floor, feet from my front door. My life’s journey sucks — until it doesn’t.
My pleasure. The song, Row On, Row On sustains me. It originated on a North Atlantic whaling ship, which had to have been a grim life. It always makes me feel like a complete weenie and after that I feel better.
That was so beautiful to read Ellen. I share your feelings of envy when I see others do physical things...even in movies. If I see someone riding a bike in NYC traffic or jumping off a bus and running across the street I get that "twang." Like you, it can be just moments. I find joy in things such as reading about mushroom (they are amazing!), or painting mushrooms. Thank you for sharing!
Our finds are on iNaturalist, with the navy blue Leptonia showing up each year in November (6 to 15 typically). The very purple Mycena bulliformis is another favorite: https://tinyurl.com/4w3eeu5e
Thank you for sharing this. In about 6 weeks I will be the donor for my brother’s stem cell transplant (battling AML). While he is a fighter and insanely optimistic, this reminds me that fear and grief and weariness still take up space in the fight. I’m going to check out this book. He’s not really into books like these, but I can draw faces on his eggs. :)
Update: transplant went beautifully, and he discharged Friday. I will be heading up to stay with him for 3 week in his short-term apartment, and I am still planning to draw faces on his eggs!
Wow-truly the ultimate gift that keeps on giving. I bow to your generosity and am hoping your brothers body recognizes your cells as visitors at first in his body and then as companions meant to heal and well, stay forever.
It seems like such a no-brainer to me because it costs me so little...and it could help keep my brother in my life a while longer. We fought like cats and dogs as kids, but he has become one of my best friends the last few years. We felt it down in our souls that my cells would be the greatest match for him. Thanks for your hope they are welcomed by his body.
I was recently asked to speak at my brother-in-laws funeral Mass. I remember saying ‘when we realized ‘forever’ had an end date’ we started living each day with an intensity. I understand your tears completely as I enter my battle with cancer. It’s so important to understand where the finish line is to find the necessary energy to channel through each day. BUT, try to think of your ‘forever’ treatment as having no end date to the beautiful life you live and selfishly I am pulling from to learn to live the time I have as beautifully as possible. 💜
May you live your time as beautifully as possible. Isn't that really what we all wish for? Thank you for sharing your wisdom and insights. Sending you love as you journey on. 💜
Thank you for your words and sharing your experience. My husband is in a similar situation with a 3 year post transplant relapse of AML with the word “indefinitely” being looped into his treatment plan. It is such a heavy weight to carry. I feel comfort in knowing I am not alone in this darkness. I also know that with some time we have been able to very slowly shift our perspective to making the most of our time together as a couple and parents of 3 small children. This journey has taught me more in 3.5 years than I have learned in the other 29 years of my life. I am holding you close in my heart as you continue on this journey. Take care.
Your authentic experiences are what I value so in your writing. When my daughter was little, we had this dramatic play game, all composed of these little plastic cat figures (no people)-her "doll house" was what she called, "The Cat House" (which always made me giggle inside...so innocent with the tardy adult meaning she was completely unaware of ). We called the game "Kitty Cat Camp" and she developed one character I completely fell in love with-this scrappy, dramatic, black and white kitty that she named, "Scourge Thomas". My character's name, was "Baby Kitten" and was Scourge Thomas' sidekick. No matter WHAT Scourge Thomas did, he always came out on top. Every now and then, usually when riding in the car together, my daughter and I resurrect those characters in short lines of dialog (so fun) and one of our favorites is when Baby Kitten is crying about something and Scourge Thomas says, "It's okay to cry Dude...but you don't have to make me cry!" Then, he goes on laughing about something irreverent. Classic. That being said, the shower is my usaual "crying place". I truly believe in the POWER of a good cry and a real now and then experience on purpose of FEELING my sadness to the depths of me. I plan it, with my "Depression Hit Parade" of music, Kleenex by my side (alone in the house) and time to feel badly, to feel all that others wish I didn't, wish that I didn't but our society frowns on this and ALWAYS wants us to find the positive...sometimes we need to cry it out to make space for the peace. My deep thanks to you for sharing you heart wrenching story and I hold it in my heart and will cry for you today in the shower.
What a comment full of treasures! I’m having my coffee wishing I could chat with Scourge Thomas and Baby Kitty. I like the idea of planning a good cry. I am usually the courageous one, handling whatever life throws at me (currently, a brother with leukemia and my son 18 days into rehab). Last night when I got home after a day of being brave, I felt my body just crumple as if to say, “no more braving today, okay?” Still, I didn’t cry. But I feel like I need to. I think im going to schedule that today.
Holly, I think you have the title of a book! "No More Braving Today". Oh my stars...Yes! Yes, to scheduling the cry. You are "braving" so much and so hard. Sometimes, when Scourge Thomas would cry, he would cry so much that he would flood a room. (Every character around him was expected to get their own row boat and ride it out...not try to make him feel better...my character cried along with him, and then Scourge Thomas would say, "This is my Cry Dude-find your own". Classic. I think he may have been the original "Drop the Mic" character...created when my daughter was only 5. I am sending you the deepest wish for tears that cleanse, tears that release sadness, anger, and all that keeps you "braving" when you need to, and release when you need to.
I love it! Perhaps after my good cry that will be the title of my next post on "Release & Gather." I'm all about releasing...but sometimes I forget to!
Mary, I had a game with my son we called “voices” where his inanimate toys came to life. I remember “carrot doctor” very well. My son had a basket of fake vegetables and each item of food would report to the carrot doctor with some ailment or other. Carrot doctor fixed them all up, natch. I do have very fond memories of “voices” although it must be said that at the time it could be quite tedious (there were a LOT of vegetables in that basket). :)
Kudos to the parents who allow their child's imagination to run wild and free! I had an opposite experience as a child with my "voices." Thankful I overcame and let my voice be my own.
Michelle-love this! Carrot doctor is needed for sure! There is something very comforting that I would like to channel (if that's alright) about an internal Carrot Doctor that I "go to" when life seems unbearable and Dr. Carrot will fix it all up. (And yes, I recall the periodic tedium of the game of voices/make believe going on forever!)
Hello Suleika. Many years ago now (45?) I got some really bad news and part of my panic came from the depth of my feelings...the shock, anxiety and sadness. I just assumed that now that I have received this news, I would always feel these strong emotions every single day for the rest of my life. This caused a lot of secondary emotions, (like dread) and made it even worse. One day soon after I went to a women's meeting and a woman sitting next to me leaned over and said something along the lines of, "When I got news like that I felt shock, anxiety, and sadness. That goes away. It will get better and you will handle things." Just that gave me an instant lift! The knowledge that I would become centered again and stronger, and be able to handle things helped me so much...and because of that knowledge, I felt stronger and stronger pretty quickly. Soon I would have more and more moments during after which I'd think, "You forgot all about that!!" Now, more things have happened and my own health suffers daily. I never feel good...but as I look for beauty and continue my creative practices, I enter flow states and find joy to still be there. It sounds to me like you will get there. I pray for you a lot.
BTW...I live in Helena, MT (but grew up in Los Angeles). When I read your book and about how you went to Avon, I had to laugh. I've had the same experience (not the same people though). I often think of your grace and love in that situation.
Suleika, you continue to be an inspiration. I may not know you, but my heart leapt when I read your doctor’s first words. I saw the Colbert segment with Jon this week about taking the summer off and have been worried about you since, but also thought perhaps it was a good thing regardless after all you’ve both experienced this year, good and bad. Time to just breathe and enjoy each other and your new home. And maybe find the right dog!
I’m so sorry for your sadness and tears over the need for continued treatment, but hope it will ease and that there will be progress with the chemo drugs and research, or a cure. Not much in life makes sense, but you have given hope to so many who are struggling with illness, as well as their caregivers. You inspire all of us to pay attention to the moments, to live with love, compassion, and creativity. I hope you feel all the love, energy and prayers in return. We are grateful to you.
I love today’s prompt and have a long list, but it begins with everyday delights, such as my beloved dog shaking her head to wake up, listening to the birdsongs as we head out for a walk, the aroma of coffee, watching trees and flowers come to life, inhaling the sweet scents of honeysuckle and jasmine, a good morning text from my mom, the voices of NPR …
Sliding my fingers across this glass, typing and deleting then retyping because I recently picked up “Between Two Kingdoms” and found myself just shaking my head yes over and over again reading it. It was with great excitement that I came across your Instagram that led me to this newsletter for updates and the chance to write to you.
In September of last year at age 31 I was diagnosed with MDS, high risk, and everything since then was rapid fire drinking from a fire hose. As I read your book there was not a chapter that I wasn’t nodding my head at in amazement of the similarities I experienced. I want to thank you for the participation in the Azacitidine trial because that was one of the regiments I had before my BMT. Today is Day +73 for me and dealing with some GVHD, but one of the lucky ones to make it this far.
The community that you have here is special and inclusive. It’s a beautiful thing when something so vile and pungent can grow grace and truth amongst people. While I’m not quite at Day 100 I already be feel thrown into the next kingdom, the one where you “restart” and the book is helping so much. I love to send snail mail and would like to write if possible. I swear I saw an address somewhere but cannot find it. Like you, writing has been my escape during these past ten months.
Today dear Susu, you open the door to my heart. All of you do. All of you with these deep, pervasive wounds.
Your wounds were met in me today by a story I heard in a retreat y'day. It was about a woman named Patacara who went crazy with grief in the time of the Buddha. Here's the shortened story ... she was a beautiful, rich young woman whose husband, infant, child, parents and brother were all killed in one terrifying day. She was so bereft that she sobbed and wailed, ripped off her clothing, and ran all over her city screaming. She was mad with grief. She ran into a space where the Buddha was teaching. She sank down before him as a cloak was thrown over her body, and wept out her story of loss and suffering.
He said to her, "Sister, there is no refuge from suffering. Recover your presence of mind. For countless lives you've been suffering and grieving for others. I can't help you with your suffering. Loss and death are true, and knowing this, the wise person walks the path of awakening."
Patacara heard and received the truth of his words, she realized the nature of impermanence -- that all forms are impermanent. She joined the sangha, practiced and was ordained one of the first and most prominent Buddhist nuns.
When I heard this story, I could hear the Buddha's words ... "For countless lives you've been suffering and grieving for others..." and I know I am also suffering and grieving for the places in my heart that life has scraped away the goodness of love -- the places life has deeply injured my physical and emotional body. I have grieved all of this for so long ... and you beautiful souls, you amazingly vibrant, bright, powerful beings who have taken on such clear suffering that we can hardly even look at it ... yet you are living it ... b/c we're too scared to take it on, and in your life, for whatever reason, you have. My heart and soul honor you. Deeply honor you.
When these parts break in you, they break in all of us. You are the fearless ones who are, without doubt, leading the rest of us into meeting (in the dark cave like in the old stories) the demons who terrify us, and once met, once allowed to be present, open our hearts into the joy and the presence of suffering -- all at once.
You are the most powerful, brilliant, clear and buoyant ones, allowing the deepest sufferings of life to rise and be met. I'm on my knees to you all.
Your doctor's comment that "the goal is not just to survive, but to live" reminds me of something the psychotherapist Esther Perel has said about growing up among Holocause survivors: there were those who didn't die, and those who came back to life.
With my own condition of glaucoma, I've also come to the realization that my life will never not be organized around it. My challenge, which has been the focus of my 100-day project, is to take steps towards learning to live, while allowing and accepting that this condition will be here, continuously eroding my vision.
Not to equate this with your situation. Mine may take my vision, but it won't take my life. But I understand, empathize, and I send you lots of love.
Thank you so much for this post! I understand the conflicting emotions that go with no longer being afraid that you will die from the cancer but also having to be on maintenance drugs forever to keep it at bay. For me it’s like being safe in my house, but seeing the wolves in my backyard ready to pounce if I lower my guard and step outside. Cancer will never not be a part of my life, even though it isn’t actively trying to kill me at this moment in time. So, I do get it, and it’s nice not to be alone in it, although I wish so much that you could just ring that bell and say, “Done!”
I love the book recommendation! I am all about books in that vein - I have three to recommend to you and your community here: Delight by J.P. Priestly, The Joy of Small Things by Hannah Jane Parkinson, and Joy in the Little Things by Kerrie Hess.
Love the book recommendations, Michelle. And also, I love your deep and personal sharing. This place (I see The Isolation Journals as a physical place, all gathered around a bonfire, each wrapped in a cozy blanket-pattern of our choice, laughing, crying, silencing, creating...
I just want to thank you for this. Ten years in and no end in sight. Defiant hope lagging, but the everyday graces are what bring peace and love. I am so grateful for you and your writing.
I got tears in my eyes reading about your tears. I know “indefinite” sounds like a long tunnel with no light, or a marathon with no silver blanket when it’s finished. Breaking it down into mentally manageable pieces helps. “I got through June” if you are a person who measures by months, or “that week’s behind me” or “we are finished with Sunday” might help. And as you move through it, the treatments will evolve, which offers much hope. I lost a beloved friend to AML and this regimen wasn’t available for him. It is for you and he would be delighted. Keep going. 🙏🏻
Thank you for writing about this moment and sharing the challenges you're facing. You mentioned in the P.S. that you wrote about this moment with the hope that it would help others navigating similar difficulties. It absolutely helped me, and based on the comments, clearly many others. The truth is I can honestly say just about every journal of yours has helped me in some way or another and for that I'm so grateful to have discovered them. While the circumstances of my own challenge is very different from yours, many of the underlying themes that you write about are quite similar. I struggle to put words to my own experience and it can feel isolating at times because it's an "invisible" illness and it feels like others don't understand the difficulties I face. That's where your journals help a lot. They help me to feel more understood, and they help to clarify my own experience, which in turn helps me to move forward with the challenges that may or may not be one for a lifetime. Lastly, I'm going to go out and get the book Things to Look Forward to. The philosophy of the small joys is similar to my own and has been essential in my own struggles. Thank you Suleika for sharing such beautiful, articulate, and healing journals. I wish you continued love, support, and healing. Take care, Trent
Hello Suleika - I just wanted to reach out in solidarity. Similar to you, I have relapsed AML after a transplant and am currently in hospital, having more chemo and battling an infection. I feel and know the uncertainty, the realisation that the shape of my life does not look how I imagined it might. The plan for my treatment is unfolding, but no-one is sure exactly what happens next. It’s hard to manage at times. Sending you so much love and strength from London - Claire x
P.S. the list has inspired me to get out of my hospital bed and have a hot shower x
Sending love and strength to you, dear Claire. Here’s to the solace of a hot shower and the life raft of community ♥️
Sending you much love & prayers..🙏🏾 ❤️(((Hugs)))
I’m a paraplegic. I have been for 38 years. Sometimes my limits and losses hit me like a hammer; I’ll never wiggle my toes in beach sand; I’ll never climb the Roman Steps or the Eiffel Tower; I’ll never dance again.
Although I deploy “Compare and despair” and work to count my blessings, I can still be smacked with a moment of grief and jealousy when I see a photo of someone doing something physical that I would love to do. Whoops, did I write “a moment?” Make that “An utter meltdown of mammoth proportions.” I snap at people I love and then I feel terribly guilty.
Nature saves me. The silliness of the grosbeak twirling on the suet feeder;, the clear, stained-glass yellow of big-leaf maples against a brilliant blue sky; the bizarreness of finding a purple or navy-blue mushroom growing near our home — and Pontificating saves me — I write, I lecture, I interrupt people and say, “Actually, . . . “ (Thank God it is impolite to clock a paraplegic. There’s times I deserve it).
Grief and gratitude are the swirling yin-yang of my life. I live each day on a knife’s edge. Will I get adequate sleep? Will my body ooze/bruise/betray me if I try an excursion? Yes’s and No’s pop up with great unpredictability. It’s exhausting to experience and exhausting to explain.
Then the phone chimes and my neighbor says she’s free for a bit. I strap on my leg braces and clunky orthopedic shoes and heave myself upright on awkward forearm crutches. We’re about to spend the next half hour peering under the bushes that line our short, rural road. We’re documenting the fungi in our neighborhood.
We’re up to about 200 species so far. It’s important to look frequently because many species will produce fruiting bodies that are out for just a day or two. The mushrooms are bizarre, adorable and incredibly interesting. Beauty, wonder and delight right there on the forest floor, feet from my front door. My life’s journey sucks — until it doesn’t.
Though our circumstances are different, this resonates so much. Thank you for this wise, powerful, truly beautiful response ♥️
My pleasure. The song, Row On, Row On sustains me. It originated on a North Atlantic whaling ship, which had to have been a grim life. It always makes me feel like a complete weenie and after that I feel better.
Sung here: https://www.youtube.com/watch?v=smBuJMzBCJQ
Lyrics here: https://www.auntieshanty.org/songs/row-on-row-on/
This is so powerful, so beautiful. Thank you, Ellen ❤️
That was so beautiful to read Ellen. I share your feelings of envy when I see others do physical things...even in movies. If I see someone riding a bike in NYC traffic or jumping off a bus and running across the street I get that "twang." Like you, it can be just moments. I find joy in things such as reading about mushroom (they are amazing!), or painting mushrooms. Thank you for sharing!
Our finds are on iNaturalist, with the navy blue Leptonia showing up each year in November (6 to 15 typically). The very purple Mycena bulliformis is another favorite: https://tinyurl.com/4w3eeu5e
Remarkable.
❤️❤️❤️❤️❤️❤️❤️❤️
Thanks for the heads up on mushrooms!
Thanks for sharing Ellen ❤️ beautiful words
This is so beautiful and so beautifully written. Your fungi project is amazing and inspiring thank you
Thank you for sharing this. In about 6 weeks I will be the donor for my brother’s stem cell transplant (battling AML). While he is a fighter and insanely optimistic, this reminds me that fear and grief and weariness still take up space in the fight. I’m going to check out this book. He’s not really into books like these, but I can draw faces on his eggs. :)
Sending love to both of you, and I hope the faces on eggs spark some lightness and delight! ✨
Update: transplant went beautifully, and he discharged Friday. I will be heading up to stay with him for 3 week in his short-term apartment, and I am still planning to draw faces on his eggs!
Wow-truly the ultimate gift that keeps on giving. I bow to your generosity and am hoping your brothers body recognizes your cells as visitors at first in his body and then as companions meant to heal and well, stay forever.
It seems like such a no-brainer to me because it costs me so little...and it could help keep my brother in my life a while longer. We fought like cats and dogs as kids, but he has become one of my best friends the last few years. We felt it down in our souls that my cells would be the greatest match for him. Thanks for your hope they are welcomed by his body.
Wishing you and your brother strength and comfort in the weeks and months to come ❤️
I was recently asked to speak at my brother-in-laws funeral Mass. I remember saying ‘when we realized ‘forever’ had an end date’ we started living each day with an intensity. I understand your tears completely as I enter my battle with cancer. It’s so important to understand where the finish line is to find the necessary energy to channel through each day. BUT, try to think of your ‘forever’ treatment as having no end date to the beautiful life you live and selfishly I am pulling from to learn to live the time I have as beautifully as possible. 💜
Thank you for this, Debra. Much love to you ♥️
May you live your time as beautifully as possible. Isn't that really what we all wish for? Thank you for sharing your wisdom and insights. Sending you love as you journey on. 💜
Yes.
Sorry for this loss. As beautifully as possible. Yes.
Suleika-
Thank you for your words and sharing your experience. My husband is in a similar situation with a 3 year post transplant relapse of AML with the word “indefinitely” being looped into his treatment plan. It is such a heavy weight to carry. I feel comfort in knowing I am not alone in this darkness. I also know that with some time we have been able to very slowly shift our perspective to making the most of our time together as a couple and parents of 3 small children. This journey has taught me more in 3.5 years than I have learned in the other 29 years of my life. I am holding you close in my heart as you continue on this journey. Take care.
Alyssa
We're holding you close too, Alyssa. Much much love ❤️
Your authentic experiences are what I value so in your writing. When my daughter was little, we had this dramatic play game, all composed of these little plastic cat figures (no people)-her "doll house" was what she called, "The Cat House" (which always made me giggle inside...so innocent with the tardy adult meaning she was completely unaware of ). We called the game "Kitty Cat Camp" and she developed one character I completely fell in love with-this scrappy, dramatic, black and white kitty that she named, "Scourge Thomas". My character's name, was "Baby Kitten" and was Scourge Thomas' sidekick. No matter WHAT Scourge Thomas did, he always came out on top. Every now and then, usually when riding in the car together, my daughter and I resurrect those characters in short lines of dialog (so fun) and one of our favorites is when Baby Kitten is crying about something and Scourge Thomas says, "It's okay to cry Dude...but you don't have to make me cry!" Then, he goes on laughing about something irreverent. Classic. That being said, the shower is my usaual "crying place". I truly believe in the POWER of a good cry and a real now and then experience on purpose of FEELING my sadness to the depths of me. I plan it, with my "Depression Hit Parade" of music, Kleenex by my side (alone in the house) and time to feel badly, to feel all that others wish I didn't, wish that I didn't but our society frowns on this and ALWAYS wants us to find the positive...sometimes we need to cry it out to make space for the peace. My deep thanks to you for sharing you heart wrenching story and I hold it in my heart and will cry for you today in the shower.
What a comment full of treasures! I’m having my coffee wishing I could chat with Scourge Thomas and Baby Kitty. I like the idea of planning a good cry. I am usually the courageous one, handling whatever life throws at me (currently, a brother with leukemia and my son 18 days into rehab). Last night when I got home after a day of being brave, I felt my body just crumple as if to say, “no more braving today, okay?” Still, I didn’t cry. But I feel like I need to. I think im going to schedule that today.
Holly, I think you have the title of a book! "No More Braving Today". Oh my stars...Yes! Yes, to scheduling the cry. You are "braving" so much and so hard. Sometimes, when Scourge Thomas would cry, he would cry so much that he would flood a room. (Every character around him was expected to get their own row boat and ride it out...not try to make him feel better...my character cried along with him, and then Scourge Thomas would say, "This is my Cry Dude-find your own". Classic. I think he may have been the original "Drop the Mic" character...created when my daughter was only 5. I am sending you the deepest wish for tears that cleanse, tears that release sadness, anger, and all that keeps you "braving" when you need to, and release when you need to.
No More Braving Today is a perfect title for a book! May I contribute?
I’m digging this idea! Stay tuned!
I love it! Perhaps after my good cry that will be the title of my next post on "Release & Gather." I'm all about releasing...but sometimes I forget to!
Great book title. You are right.
A scheduled cry. Beautiful. Wow. Now I will put it on my calendar with a reminder. I love my tears.
Mary, I had a game with my son we called “voices” where his inanimate toys came to life. I remember “carrot doctor” very well. My son had a basket of fake vegetables and each item of food would report to the carrot doctor with some ailment or other. Carrot doctor fixed them all up, natch. I do have very fond memories of “voices” although it must be said that at the time it could be quite tedious (there were a LOT of vegetables in that basket). :)
Kudos to the parents who allow their child's imagination to run wild and free! I had an opposite experience as a child with my "voices." Thankful I overcame and let my voice be my own.
Michelle-love this! Carrot doctor is needed for sure! There is something very comforting that I would like to channel (if that's alright) about an internal Carrot Doctor that I "go to" when life seems unbearable and Dr. Carrot will fix it all up. (And yes, I recall the periodic tedium of the game of voices/make believe going on forever!)
Lovely names.
No words of advice or pity from here. Just deep gratitude for who you are. Sending thoughts of comfort to you for the days ahead.
Grateful for you too, Linda. Sending love ♥️
Hello Suleika. Many years ago now (45?) I got some really bad news and part of my panic came from the depth of my feelings...the shock, anxiety and sadness. I just assumed that now that I have received this news, I would always feel these strong emotions every single day for the rest of my life. This caused a lot of secondary emotions, (like dread) and made it even worse. One day soon after I went to a women's meeting and a woman sitting next to me leaned over and said something along the lines of, "When I got news like that I felt shock, anxiety, and sadness. That goes away. It will get better and you will handle things." Just that gave me an instant lift! The knowledge that I would become centered again and stronger, and be able to handle things helped me so much...and because of that knowledge, I felt stronger and stronger pretty quickly. Soon I would have more and more moments during after which I'd think, "You forgot all about that!!" Now, more things have happened and my own health suffers daily. I never feel good...but as I look for beauty and continue my creative practices, I enter flow states and find joy to still be there. It sounds to me like you will get there. I pray for you a lot.
Grateful for your words, Linda, for your wisdom. Sending love ♥️
BTW...I live in Helena, MT (but grew up in Los Angeles). When I read your book and about how you went to Avon, I had to laugh. I've had the same experience (not the same people though). I often think of your grace and love in that situation.
Suleika, you continue to be an inspiration. I may not know you, but my heart leapt when I read your doctor’s first words. I saw the Colbert segment with Jon this week about taking the summer off and have been worried about you since, but also thought perhaps it was a good thing regardless after all you’ve both experienced this year, good and bad. Time to just breathe and enjoy each other and your new home. And maybe find the right dog!
I’m so sorry for your sadness and tears over the need for continued treatment, but hope it will ease and that there will be progress with the chemo drugs and research, or a cure. Not much in life makes sense, but you have given hope to so many who are struggling with illness, as well as their caregivers. You inspire all of us to pay attention to the moments, to live with love, compassion, and creativity. I hope you feel all the love, energy and prayers in return. We are grateful to you.
I love today’s prompt and have a long list, but it begins with everyday delights, such as my beloved dog shaking her head to wake up, listening to the birdsongs as we head out for a walk, the aroma of coffee, watching trees and flowers come to life, inhaling the sweet scents of honeysuckle and jasmine, a good morning text from my mom, the voices of NPR …
Hello Suleika,
Sliding my fingers across this glass, typing and deleting then retyping because I recently picked up “Between Two Kingdoms” and found myself just shaking my head yes over and over again reading it. It was with great excitement that I came across your Instagram that led me to this newsletter for updates and the chance to write to you.
In September of last year at age 31 I was diagnosed with MDS, high risk, and everything since then was rapid fire drinking from a fire hose. As I read your book there was not a chapter that I wasn’t nodding my head at in amazement of the similarities I experienced. I want to thank you for the participation in the Azacitidine trial because that was one of the regiments I had before my BMT. Today is Day +73 for me and dealing with some GVHD, but one of the lucky ones to make it this far.
The community that you have here is special and inclusive. It’s a beautiful thing when something so vile and pungent can grow grace and truth amongst people. While I’m not quite at Day 100 I already be feel thrown into the next kingdom, the one where you “restart” and the book is helping so much. I love to send snail mail and would like to write if possible. I swear I saw an address somewhere but cannot find it. Like you, writing has been my escape during these past ten months.
Cameron “Cam” Bendgen
Dearest Beloved Susu et al,
Today dear Susu, you open the door to my heart. All of you do. All of you with these deep, pervasive wounds.
Your wounds were met in me today by a story I heard in a retreat y'day. It was about a woman named Patacara who went crazy with grief in the time of the Buddha. Here's the shortened story ... she was a beautiful, rich young woman whose husband, infant, child, parents and brother were all killed in one terrifying day. She was so bereft that she sobbed and wailed, ripped off her clothing, and ran all over her city screaming. She was mad with grief. She ran into a space where the Buddha was teaching. She sank down before him as a cloak was thrown over her body, and wept out her story of loss and suffering.
He said to her, "Sister, there is no refuge from suffering. Recover your presence of mind. For countless lives you've been suffering and grieving for others. I can't help you with your suffering. Loss and death are true, and knowing this, the wise person walks the path of awakening."
Patacara heard and received the truth of his words, she realized the nature of impermanence -- that all forms are impermanent. She joined the sangha, practiced and was ordained one of the first and most prominent Buddhist nuns.
When I heard this story, I could hear the Buddha's words ... "For countless lives you've been suffering and grieving for others..." and I know I am also suffering and grieving for the places in my heart that life has scraped away the goodness of love -- the places life has deeply injured my physical and emotional body. I have grieved all of this for so long ... and you beautiful souls, you amazingly vibrant, bright, powerful beings who have taken on such clear suffering that we can hardly even look at it ... yet you are living it ... b/c we're too scared to take it on, and in your life, for whatever reason, you have. My heart and soul honor you. Deeply honor you.
When these parts break in you, they break in all of us. You are the fearless ones who are, without doubt, leading the rest of us into meeting (in the dark cave like in the old stories) the demons who terrify us, and once met, once allowed to be present, open our hearts into the joy and the presence of suffering -- all at once.
You are the most powerful, brilliant, clear and buoyant ones, allowing the deepest sufferings of life to rise and be met. I'm on my knees to you all.
On my knees.
Stunning.
Dearest Suleika,
Your doctor's comment that "the goal is not just to survive, but to live" reminds me of something the psychotherapist Esther Perel has said about growing up among Holocause survivors: there were those who didn't die, and those who came back to life.
With my own condition of glaucoma, I've also come to the realization that my life will never not be organized around it. My challenge, which has been the focus of my 100-day project, is to take steps towards learning to live, while allowing and accepting that this condition will be here, continuously eroding my vision.
Not to equate this with your situation. Mine may take my vision, but it won't take my life. But I understand, empathize, and I send you lots of love.
Thank you so much for this post! I understand the conflicting emotions that go with no longer being afraid that you will die from the cancer but also having to be on maintenance drugs forever to keep it at bay. For me it’s like being safe in my house, but seeing the wolves in my backyard ready to pounce if I lower my guard and step outside. Cancer will never not be a part of my life, even though it isn’t actively trying to kill me at this moment in time. So, I do get it, and it’s nice not to be alone in it, although I wish so much that you could just ring that bell and say, “Done!”
I love the book recommendation! I am all about books in that vein - I have three to recommend to you and your community here: Delight by J.P. Priestly, The Joy of Small Things by Hannah Jane Parkinson, and Joy in the Little Things by Kerrie Hess.
Michelle xoxo
Love the book recommendations, Michelle. And also, I love your deep and personal sharing. This place (I see The Isolation Journals as a physical place, all gathered around a bonfire, each wrapped in a cozy blanket-pattern of our choice, laughing, crying, silencing, creating...
I just want to thank you for this. Ten years in and no end in sight. Defiant hope lagging, but the everyday graces are what bring peace and love. I am so grateful for you and your writing.
“Everyday graces” ♥️♥️♥️
Seeing your reply is one of those graces! So many prayers arise for you and Jon❤️
I got tears in my eyes reading about your tears. I know “indefinite” sounds like a long tunnel with no light, or a marathon with no silver blanket when it’s finished. Breaking it down into mentally manageable pieces helps. “I got through June” if you are a person who measures by months, or “that week’s behind me” or “we are finished with Sunday” might help. And as you move through it, the treatments will evolve, which offers much hope. I lost a beloved friend to AML and this regimen wasn’t available for him. It is for you and he would be delighted. Keep going. 🙏🏻
♥️♥️♥️
Thank you for writing about this moment and sharing the challenges you're facing. You mentioned in the P.S. that you wrote about this moment with the hope that it would help others navigating similar difficulties. It absolutely helped me, and based on the comments, clearly many others. The truth is I can honestly say just about every journal of yours has helped me in some way or another and for that I'm so grateful to have discovered them. While the circumstances of my own challenge is very different from yours, many of the underlying themes that you write about are quite similar. I struggle to put words to my own experience and it can feel isolating at times because it's an "invisible" illness and it feels like others don't understand the difficulties I face. That's where your journals help a lot. They help me to feel more understood, and they help to clarify my own experience, which in turn helps me to move forward with the challenges that may or may not be one for a lifetime. Lastly, I'm going to go out and get the book Things to Look Forward to. The philosophy of the small joys is similar to my own and has been essential in my own struggles. Thank you Suleika for sharing such beautiful, articulate, and healing journals. I wish you continued love, support, and healing. Take care, Trent