I wish I could help, sending you strength and a smile. Maybe Bellatrix can come by for a visit.
While reading I was reminded of Camus. I think a lot about Camus these days, esp. his essay The Myth of Sisyphus. You speak of the surreality of living, his philosophy is fully based on absurdism, how to find meaning in a meaningless life. Existentialism. Have you read Camus?
Thank you, sweet friend. I would love Bellatrix and her stand up comedy! I did read Camus in high school! I have to read that essay though. He seemed like a smart, thinking dude with creative ideas on life.
Ah Nadia, one feels helpless reading this to know you suffer so through pain. I am glad you have your dreams. May they continue in all their varied and wild and softening beauty. "Upon waking such dreams make me feel more enlivened, in love with life. I feel resiliency coming back to me, the determination to hold on a little longer." This is a lovely line to read.
I will say that it is wonderful to have you back here on Substack. I hope you can find some warmth and comfort from being back here. Plus, I'm glad you have Kimberly to connect with and share in your experience of pain.
Thank you for such a wonderful comment, Nathan! It’s nice to read and engage with y’all again. I’m definitely going to take it a bit slow with writing though as it takes a lot of me, but I’ll try to be a more active reader. And I love that you’re connected with Kimberly. Her writing is a balm. You both rock!
“And thus every now and then I forget to notice the severity and sharpness of my pain so deeply embedded in me. Maybe that’s my pain freedom—an odd power, gift, and intention, all in one.” I think there’s brilliant wisdom in this statement Nadia. I’m certain our brains are capable of so much more than we’re aware, and something I think those of us living with chronic illness develop is an almost two-brain experience, where the physical experience exists in one brain, while a very real, liberated experience exists in the other. And we switch back and forth like changing channels. I don’t know but it might simply be born from survival, the desperate need to escape pain. But whatever the reason, it’s a place to cultivate, strengthen, so the screams of the body can be held in its embrace. Maybe this is also what you’re doing in your dreams?
This makes me think of the show Severance where people live a double life and don't know about it. But we're well aware, but over time, we learn how to dissociate. It's definitely a survival and coping mechanism, and I'm grateful that my brain and body learned how to protect me in ways that allow me to be sane. I hope you're doing a bit better these days. Sending you virtual hugs, dear Kimberly!
Best wishes for your continued strength and courage in the face of a hard affliction.
With regard to your question, a great regret in my life is that I was not open more to the imaginative possibilitles of the surreal. I was into the surrealist artists when young - Dalí, Ernst - and the films of Buñuel, then for many years nothing like that, hard logical thought processes only.
Now I'm trying to make up for lost time wih as much normality-breaking irreality or strangeness as can be borne. David Lynch and above all Inland Empire is a great solace, I think.
Thank you so much, A.P. Perhaps you needed that period of logic for whatever reason. And now you appreciate surrealism all the more. And I’m glad you get to do that now.
Dear Nadia, I couldn't agree more about the surreality of life, particularly when one is dealing with severe and never ending pain. May fresh and vivid dreams visit you each and every night.
Some say that pain is a state of mind, and in some cases that's true. But for people like you, it must be enormously difficult. I don't have chronic pain, but I do have a neurological condition that negatively affects the muscles in my neck, and it's a 24/7 deal. So I can relate, at least in some ways, and I wish you only the best.
This is so beautiful and true: "Today it’s a relief to have and hold words that give name, sense, and interpretation to living in a painful body, allowing me to better process my experiences, allowing others to better understand what chronic pain embodies."
Although I'm sure it is not easy to go through what you are, I am touched deeply, actually, by your perspective on life it has given you. We all have those moments that are hard to cope with and get through and to see the hope within, and it seems you are living it daily, and so poetically minded, to boot! You are an inspiration! I love how in one dream you are just floating through life, through sea after sea and, in another, you are a badass zombie hunter! Your dream life sounds wonderfully rich, providing all those opportunities you long for and that is wonderful! Thank you for sharing. XO
Hi Danielle! Thank you for stopping by and your wonderful, touching comment. It’s definitely something I had to cultivate for years. And some people in similar situations never get to that point of finding value and peace in their situation.
Dear and most beloved Nadia, I do so love the spaces that you put your brilliant mind and soul in before you invite us to dance with you. It seems that we are each tasked with a set of circumstances which we must find a way to navigate. Some circumstances seem an awful lot more appealing than others, but I’m hesitant to label any preferable over another, because some which appear so awfully difficult seem to also come with otherworldly gifts—like your way of seeing, and expressing.
I think that pain has much to teach, and offer. Not least a type of intelligence with I believe is very hard to come by, otherwise.
A few years back, when I was in the most physical pain that I have ever experienced, it built to a crescendo and I felt so clearly as though there were two me’s experiencing it. One which was at the brink of being driven mad by the pain, and one which was watching the whole thing, untouched by the pain, just taking it all in as yet another example of how things can sometimes be, with a peaceful interest. I suspect that part is always there, regardless of external or internal experience, and if we’re lucky, occasionally we get to inhabit that pure awareness. Thank you so much for reminding me of this. And for sharing your fierce and hopeful intellect.
My sweet, hopeful, lovely, brilliant Hope, I'm sorry you experienced the deepest depths of pain. That must have been excruciating. But, I'm glad a part of you was there to protect that part of you by observing and finding peace in that terrifying, horrible state. I can definitely relate to that severance of sort, experiencing, observing, finding value, and being at peace with a double life of sorts. I absolutely agree that it can be a gift when we let it be. I hope you and yours are taking care. Sending lots of love and hugs from across the pond.
Just wow, Nadia! I didn’t know it was possible to be more in awe of you, your hopefulness, and your spirit, but this post felt like a gift that I will forever cherish.
I truly wish I could take away the pain with my bear hands and whip up some magic potion that will scare the condition away for good! And I hope one day I can! But hopefully the imagery of a dear supporter slaying your pain can live in those dreams and relieve the pain that way.
I’m so grateful to you for being vulnerable and helping me understand your experience with chronic pain. I especially love the poem your fourteen year old self wrote! She was definitely so ahead of her time because the words speak to me so loudly now! I second the surreal feeling of aging while feeling ageless. As the year passes and my age grows, my soul feels younger and freer than ever. I also resonate so much with your perspectives on dreams! There is a quiet beauty in the life lived in our minds. So much love to you, Nadia! Very hopeful that soon I’ll read about the pain free days 💚
Thank you so much, Kharissa. I feel the love, care, and support. And if there are anythings you go through that are painful, I slay them alongside you!
I’m so glad to hear you feel more liberated and happier and younger as you age. Really, it’s more important how you feel inside than anything else. My granny had rose-colored glasses on til the day she died, and that always inspired me.
Your ordeal sounds exhausting and difficult but it seems to have also given you some kind of deeper version of reality. I’m not trying to take away from the pain which I’m sure is just as real despite this. I just mean there are some wonderful lessons for all of here, Nadia.
Thank you so much, Kathleen :'). Yes, as much as life is painful, what am I going to do about it? I can only control so much, so may as well find some meaning and value in all of this and experience life fully how ever I can. <3
My dear, the only thing I know which resembles your chronic pain is chronic anxiety, but how much more difficult it must be, and more exhausting. But it does seem you have found some ways, both conscious and unconscious, to transform your relationship to pain. I'm holding you in my heart. ❤️
I’m holding you in mine, my friend. Chronic anxiety can be as visceral and so physical too. I empathize with your struggling and wish you have more peaceful days.
To see someone share their pain in such a pure way free of bitterness made me tear up. Your experience reminds me somewhat of Richard Wurmbrand’s description of his imprisonment under the Communists in Romania. They kept him drugged in solitary confinement but he was able to hold onto his hope and later wrote, “I found that joy can be acquired like a habit, in the same way as a folded sheet of paper falls naturally into the same fold.”
That is so lovely to say, Amelia. That must have been a horrific experience for Richard. But he is right, it’s a choice and a habit to be hopeful and happy.
Hi Nadia. That is such a tough world to inhabit, especially for so long, my heart goes out to you. Is it mostly joint related? I am sure you have asked every question about your body there is to ask. Sometimes just being on the asking journey is so damn fatiguing.
Your name appears twice in the book of poetry I have just finished. Once on the back cover, where you say nice things and again inside, where I mention you as being so important to me as a reader. Keep hanging on and doing what you do, moving boundaries and enlightening us as you go. thanks
Weston, that is so kind of you :’). Thank you so much. When is your book coming out? Please share your link, I cannot wait to buy it when it releases! I wish the pain was only joint related. It’s a lot of things. But it’s okay. We adapt!
Nadia, the book is printed by Lulu and they are doing a nice job. It has 107 poems, 167 pages, mostly from this past 18 months. I started gathering poems for it in January and have been working on it for these past five months. I just ordered what I am certain is the final proof copy. By sometime in June I will have set up the link to order it. Take care.
I wish I could help, sending you strength and a smile. Maybe Bellatrix can come by for a visit.
While reading I was reminded of Camus. I think a lot about Camus these days, esp. his essay The Myth of Sisyphus. You speak of the surreality of living, his philosophy is fully based on absurdism, how to find meaning in a meaningless life. Existentialism. Have you read Camus?
Thank you, sweet friend. I would love Bellatrix and her stand up comedy! I did read Camus in high school! I have to read that essay though. He seemed like a smart, thinking dude with creative ideas on life.
Yes, he thought deeply.
For sure!
Ah Nadia, one feels helpless reading this to know you suffer so through pain. I am glad you have your dreams. May they continue in all their varied and wild and softening beauty. "Upon waking such dreams make me feel more enlivened, in love with life. I feel resiliency coming back to me, the determination to hold on a little longer." This is a lovely line to read.
I will say that it is wonderful to have you back here on Substack. I hope you can find some warmth and comfort from being back here. Plus, I'm glad you have Kimberly to connect with and share in your experience of pain.
Thank you for such a wonderful comment, Nathan! It’s nice to read and engage with y’all again. I’m definitely going to take it a bit slow with writing though as it takes a lot of me, but I’ll try to be a more active reader. And I love that you’re connected with Kimberly. Her writing is a balm. You both rock!
“And thus every now and then I forget to notice the severity and sharpness of my pain so deeply embedded in me. Maybe that’s my pain freedom—an odd power, gift, and intention, all in one.” I think there’s brilliant wisdom in this statement Nadia. I’m certain our brains are capable of so much more than we’re aware, and something I think those of us living with chronic illness develop is an almost two-brain experience, where the physical experience exists in one brain, while a very real, liberated experience exists in the other. And we switch back and forth like changing channels. I don’t know but it might simply be born from survival, the desperate need to escape pain. But whatever the reason, it’s a place to cultivate, strengthen, so the screams of the body can be held in its embrace. Maybe this is also what you’re doing in your dreams?
This makes me think of the show Severance where people live a double life and don't know about it. But we're well aware, but over time, we learn how to dissociate. It's definitely a survival and coping mechanism, and I'm grateful that my brain and body learned how to protect me in ways that allow me to be sane. I hope you're doing a bit better these days. Sending you virtual hugs, dear Kimberly!
Best wishes for your continued strength and courage in the face of a hard affliction.
With regard to your question, a great regret in my life is that I was not open more to the imaginative possibilitles of the surreal. I was into the surrealist artists when young - Dalí, Ernst - and the films of Buñuel, then for many years nothing like that, hard logical thought processes only.
Now I'm trying to make up for lost time wih as much normality-breaking irreality or strangeness as can be borne. David Lynch and above all Inland Empire is a great solace, I think.
Thank you so much, A.P. Perhaps you needed that period of logic for whatever reason. And now you appreciate surrealism all the more. And I’m glad you get to do that now.
Dear Nadia, I couldn't agree more about the surreality of life, particularly when one is dealing with severe and never ending pain. May fresh and vivid dreams visit you each and every night.
Thank you so much, Wendy. I see you and wish you all the comfort and peace in your life. <3
Some say that pain is a state of mind, and in some cases that's true. But for people like you, it must be enormously difficult. I don't have chronic pain, but I do have a neurological condition that negatively affects the muscles in my neck, and it's a 24/7 deal. So I can relate, at least in some ways, and I wish you only the best.
Ooof. That sounds rough, Jim. I'm so sorry. 24/7 is no fun at all! I wish you strength.
This is so beautiful and true: "Today it’s a relief to have and hold words that give name, sense, and interpretation to living in a painful body, allowing me to better process my experiences, allowing others to better understand what chronic pain embodies."
Thank you so much, Lev. I’m glad (but also not glad) that it resonates with you. At least, it’s less isolating and lonely.
Always inspiring, even when you are struggling. Hugs and love to you.
Thank you so much, Serena. I appreciate you.
Although I'm sure it is not easy to go through what you are, I am touched deeply, actually, by your perspective on life it has given you. We all have those moments that are hard to cope with and get through and to see the hope within, and it seems you are living it daily, and so poetically minded, to boot! You are an inspiration! I love how in one dream you are just floating through life, through sea after sea and, in another, you are a badass zombie hunter! Your dream life sounds wonderfully rich, providing all those opportunities you long for and that is wonderful! Thank you for sharing. XO
Hi Danielle! Thank you for stopping by and your wonderful, touching comment. It’s definitely something I had to cultivate for years. And some people in similar situations never get to that point of finding value and peace in their situation.
Dear and most beloved Nadia, I do so love the spaces that you put your brilliant mind and soul in before you invite us to dance with you. It seems that we are each tasked with a set of circumstances which we must find a way to navigate. Some circumstances seem an awful lot more appealing than others, but I’m hesitant to label any preferable over another, because some which appear so awfully difficult seem to also come with otherworldly gifts—like your way of seeing, and expressing.
I think that pain has much to teach, and offer. Not least a type of intelligence with I believe is very hard to come by, otherwise.
A few years back, when I was in the most physical pain that I have ever experienced, it built to a crescendo and I felt so clearly as though there were two me’s experiencing it. One which was at the brink of being driven mad by the pain, and one which was watching the whole thing, untouched by the pain, just taking it all in as yet another example of how things can sometimes be, with a peaceful interest. I suspect that part is always there, regardless of external or internal experience, and if we’re lucky, occasionally we get to inhabit that pure awareness. Thank you so much for reminding me of this. And for sharing your fierce and hopeful intellect.
My sweet, hopeful, lovely, brilliant Hope, I'm sorry you experienced the deepest depths of pain. That must have been excruciating. But, I'm glad a part of you was there to protect that part of you by observing and finding peace in that terrifying, horrible state. I can definitely relate to that severance of sort, experiencing, observing, finding value, and being at peace with a double life of sorts. I absolutely agree that it can be a gift when we let it be. I hope you and yours are taking care. Sending lots of love and hugs from across the pond.
So much love, and many hugs, to you x
❤️😘
Just wow, Nadia! I didn’t know it was possible to be more in awe of you, your hopefulness, and your spirit, but this post felt like a gift that I will forever cherish.
I truly wish I could take away the pain with my bear hands and whip up some magic potion that will scare the condition away for good! And I hope one day I can! But hopefully the imagery of a dear supporter slaying your pain can live in those dreams and relieve the pain that way.
I’m so grateful to you for being vulnerable and helping me understand your experience with chronic pain. I especially love the poem your fourteen year old self wrote! She was definitely so ahead of her time because the words speak to me so loudly now! I second the surreal feeling of aging while feeling ageless. As the year passes and my age grows, my soul feels younger and freer than ever. I also resonate so much with your perspectives on dreams! There is a quiet beauty in the life lived in our minds. So much love to you, Nadia! Very hopeful that soon I’ll read about the pain free days 💚
Thank you so much, Kharissa. I feel the love, care, and support. And if there are anythings you go through that are painful, I slay them alongside you!
I’m so glad to hear you feel more liberated and happier and younger as you age. Really, it’s more important how you feel inside than anything else. My granny had rose-colored glasses on til the day she died, and that always inspired me.
Much love to you, dear! <3
That 14 yo poet 💜💜
Your ordeal sounds exhausting and difficult but it seems to have also given you some kind of deeper version of reality. I’m not trying to take away from the pain which I’m sure is just as real despite this. I just mean there are some wonderful lessons for all of here, Nadia.
Thank you so much, Kathleen :'). Yes, as much as life is painful, what am I going to do about it? I can only control so much, so may as well find some meaning and value in all of this and experience life fully how ever I can. <3
Best wishes, Nadia. You wrote about pain and hope, and captured the ambiguity of standing in between them so well.
Thank you so much, Priya!
My dear, the only thing I know which resembles your chronic pain is chronic anxiety, but how much more difficult it must be, and more exhausting. But it does seem you have found some ways, both conscious and unconscious, to transform your relationship to pain. I'm holding you in my heart. ❤️
I’m holding you in mine, my friend. Chronic anxiety can be as visceral and so physical too. I empathize with your struggling and wish you have more peaceful days.
thank you my dear 🤍🩷❤️
To see someone share their pain in such a pure way free of bitterness made me tear up. Your experience reminds me somewhat of Richard Wurmbrand’s description of his imprisonment under the Communists in Romania. They kept him drugged in solitary confinement but he was able to hold onto his hope and later wrote, “I found that joy can be acquired like a habit, in the same way as a folded sheet of paper falls naturally into the same fold.”
That is so lovely to say, Amelia. That must have been a horrific experience for Richard. But he is right, it’s a choice and a habit to be hopeful and happy.
Hi Nadia. That is such a tough world to inhabit, especially for so long, my heart goes out to you. Is it mostly joint related? I am sure you have asked every question about your body there is to ask. Sometimes just being on the asking journey is so damn fatiguing.
Your name appears twice in the book of poetry I have just finished. Once on the back cover, where you say nice things and again inside, where I mention you as being so important to me as a reader. Keep hanging on and doing what you do, moving boundaries and enlightening us as you go. thanks
Weston, that is so kind of you :’). Thank you so much. When is your book coming out? Please share your link, I cannot wait to buy it when it releases! I wish the pain was only joint related. It’s a lot of things. But it’s okay. We adapt!
Nadia, the book is printed by Lulu and they are doing a nice job. It has 107 poems, 167 pages, mostly from this past 18 months. I started gathering poems for it in January and have been working on it for these past five months. I just ordered what I am certain is the final proof copy. By sometime in June I will have set up the link to order it. Take care.
That is amazing! I cannot wait to read it!
I will let you know.