The powerful poetry of pain, in full view, the honest and raw disclosure. It is in small communities of common concern where we find love and support. It is where we are able to express some of our deepest thoughts and feelings. Good on you, and for you, Holly. This is a gift for us, out here in the ether.
My dear Holly, thank you for sharing what you are going through. I'm sorry for your pain. I will keep you in my prayers and send loving, good, healing thoughts your way. May angels attend you. Love you dear niece.
Holly, I had meant to be powering through my first errand of the day by now but this post compelled me to linger in my pjs. I am slowly recovering from five weeks of pneumonia, which will soon be as if it never was. Your disclosure of a life-changing diagnosis, wrapped in poetry like a gift for your readers, has caught me at a moment of heightened awareness to the fragility of our physical selves. I’m particularly moved by the face-washing poem, that cup of palms and the contours traced by your fingers. In memento mori paintings of another time, artists painted skulls. These images reverberate as I read the poem. Underneath the features we meet in the mirror, we all look the same. Your poem reminds me of this centuries-old insight but you, unlike the artists, are also speaking of care—the care we receive from others and give to ourselves. It’s a wonderful poem. I don’t men to diminish the others, only to honor the connection I felt to this one.
Oh, Rona. Thank you so much for staying in your PJs long enough to read this. The face washing was my favorite too. That it conjured for you memento mori paintings has me over the moon. I finished this poem late last night. Something was missing, and I read it over and over again trying to figure out what it was. It was the wide orbs made of brow and cheekbones— which was probably responsible for this conjuring. So it means a lot that you saw it. ♥️💀
Thank you, Jeffrey. Your words of support mean a great deal to me. As I said in this post, I can’t believe how fortunate I am to have found in the perfect time the community on this platform to give me the boost I need to keep moving toward my writing goals—to say nothing of the wonderful friendships. 🔥
Holly thank you for sharing. I'm sorry to hear you are in pain. The joy of writing coming before the pain really resonated with me. Wishing for healing.
“Three and then five more ministrations from a cup not so empty after all.” Simply beautiful Holly. I imagine you feel both relief and hope with a diagnosis/treatment plan for the pain you’ve been suffering for a while now. I worked with a gentleman last year who has AS so if you’d ever like to speak with him, let me know. Sometimes just finding a few fellow travelers in our diagnostic sphere can make all the difference. So grateful to know you and feel honored to be part of this reciprocating filling of cups.🤍
Thank you, thank you, Kimberly. I’ll reach out to you privately about connecting with him for sure.
I have to tell you that finding unfixed not long before this health journey—this message from my body? (I’m not yet settled on what to call it)— has felt meant to be. In the months during which I felt systemic pain moving through my body, but didn’t know why and was having a difficult time getting into the doctors I needed to see and was watching the pain change me, my gait and capability to do what had been part of who I am, I thought so often of the wisdom you’ve gathered through your own story and through sharing those of others. It helped me continue to thrive and see what was beautiful and what was going well. It helped me tame my frustration at not being able to figure out how to get relief so, thank you thank you. I too am honored to be part of the reciprocation. ♥️
@Holly Starley has written a lovely post about a difficult medical diagnosis, “To the Pain.” I don’t know why sharing the knowledge of our wounds helps us and others, but it does: another mystery of our lives as human animals. Aristotle called it catharsis, a releasing or (literally) a cleansing. He was a doctor’s son, and so more than likely witnessed the treatment of wounds.
I would love to know what words other languages have for catharsis that are not a straight translation.
I love this, Elizabeth. It is a concept that’s hard to fully grasp. It can indeed be so comforting, affirming to learn about what’s going on for others who are in pain or facing difficult moments. I think it’s something about how much sharing the load of what must be done as a matter of survival is woven into our blood and bones and DNA. It feels like purpose to share and be shared with. It feels like being a part of something that matters very much, like being seen and trusted and included. Ha. I digress.
Thank you much for reading and commenting, Elizabeth. Let me know what you learn about words for catharsis. :) 💕
Oh you are a poet! (Not that I should be surprised.) Thank you for your vulnerability my friend - it is a gift we give others when we allow them deeper into our lives. May you find peace, progress in your physical health, and joy, so much joy! Are your symptoms severe enough to inhibit your ability (or belief in your ability) to return to life on the road? I know how every.little.thing. is just a bit harder out there.
Awwww, thank you, Heather! The road is, at the moment, out of the question. But stairs are pretty unmanageable some days. 🤪Sooo … it’s a phase where I am incredibly fortunate to have family and friends open up homes as I figure things out.
AS and what works for each person in terms of pain management is pretty individualized. Once we figure out what my symptoms will respond to, and what my best course of treatment in terms of slowing disease progression is, I very much hope to be able to get back to life roaming, so to speak. And that for sure seems possible from what I’ve researched.
Dah! Mary, you’ve made my day! Rona Maynard once advised us to make a compliments file. To be called a must read by you will go in that file posthaste! Thank you for reading and thank you, thank you for sharing. You are among those I call friend through our writing, and what a gift that is! 😍
I'm sorry to hear this Holly, and relieved you got a diagnosis. I have multi-autoimmune syndrome and while it can suck, the not knowing what was wrong before diagnosis was the worst, psychologically. I hope your treatments are helpful and look forward to reading your essays!
Yes, thank you, Anna. Strangely, I think I experienced the most relief when the blood markers came back showing how much inflammation was in my system. I think maybe I have been worried that I was making too big a deal of the pain. This is a pattern for me. Suck it up as an unfortunate message I’ve killed myself for far too long. Knowing that it’s AS is sinking in as a relief—as I can make a plan going forward.
And I’m certainly aware how fortunate I am that it was only months before I got a diagnosis. I know how often this is not the case with things like auto immune. I hope you didn’t have to suffer in the liminal space between unexplained symptoms and diagnosis for too terribly long.
Thank you for sharing. It’s a lovely thing that we humans are helped by this simple act of knowing each other’s struggles and shoring each other up by our desire to do so.
I enjoy your work and am grateful you’re reading mine! 🥰
I'm having flashbacks to massage therapy school and trying to comprehend the patterns and processes of ankylosing spondylitis, spondylolisthesis and spondylosis. All sounded evil in their own unique ways. I've read about Botox injections being successfully used for migraines and pain management---and there's a lot of research around B27 autoimmune disease as its affecting millions. Sometimes it's not desirable to be one in a million---I'm sorry to hear that you've been weighted with this but it also sounds like you've found the words to stand taller despite it, Holly!
Thank you, Jules! Right? They kind of sound like they crawled out of a cave. And to be honest, they can feel that way. It can mess with your mind to think too hard about the fact that your own immune system is going out your joints, your spine, the very thing that holds you up.
I started researching B27 just recently, mostly because it’s only recently that I’ve decided to accept this is happening. 🤣 I’m being reminded quite often how good we humans are at denial. There has been a lot of me thinking if I can just stop thinking about my joint and the pain, then I can make it go away. This, spoiler alert, has not been successful. And yes, it’s awesome that so much research is going on. I’ve already been mulling over the possibility of finding a study to be a part of.
Thank you ever so much for reading and commenting.
I'm sure you've come to the same conclusion. B27 is way more exciting as a Bingo number! Semi-related, have you watched Cake? Jennifer Aniston's character deals with insurmountable chronic pain---I love everything she does but this one was a deeply serious and memorable turn. I can't believe it's from 2014! https://www.youtube.com/watch?v=P3IsUOSHlnU
I hear your pain. I have severe RA which effects my feet-hard to walk outside, and my hands-making it difficult to type.
Deciding to begin my Substack brought on fears of failure. To my surprise the positivity I have received has helped me to push through my pain and to look forward, not backwards. 🦕
Oh, Wendy. I’m so sorry. On days when the inflammation is particularly bad, it moves into my hands. I beg it not to. And I use dictation as much as I can to give them relief. So I, too, feel your pain.
I’m so glad you’re here on Substack. I’m so glad you’re looking forward. And I look forward to checking out your writing.
Aw, CK. Thank you, my friend. A thing about me is that sleeping is my superpower—or one of them anyway ;). There have certainly been nights when my powers have been tested. And I’ve supplemented them of late with Tylenol pm. But I sleep well for the much greater part of the time. For this, I am unspeakably grateful and realize my fortune. Thank you for asking. ♥️
Holly, these poems are a gift, and I’m wishing you strength and luck as you navigate your diagnosis and the next steps in treatment. I was especially touched by what you said about your gratitude for having created this space pre-diagnosis…that was an especially poignant reflection ❤️ I’ll be keeping you in my thoughts!
Thank you, Maddie. Remember when, a while ago, I was going to reach out to you about different types of collagen. That was during the pre-figuring out. I was wondering, what in the world is going on with my joints? What a crazy time.
I think of you sometimes when I think of my leap and how grateful I am to have taken it. Kind of a Maddie would be so proud type of feeling. Ha! So I love that you noted this. 🥰
I absolutely remember this exchange! While I certainly wish the outcome were different, I’m glad that you’ve found clarity. Without clarity, it can be so hard to process your emotions and start figuring out what’s next.
That second paragraph is making me tear up! 🥹 Absolutely cheering you on with heaps of pride…selfishly, in part, because you’re a beautiful writer and I’m so glad you’re here.
The powerful poetry of pain, in full view, the honest and raw disclosure. It is in small communities of common concern where we find love and support. It is where we are able to express some of our deepest thoughts and feelings. Good on you, and for you, Holly. This is a gift for us, out here in the ether.
Thank you, Gary. It’s such a gift, the reciprocity of hearing and being heard. I’m much appreciate you reading and commenting. 🙂↔️
My dear Holly, thank you for sharing what you are going through. I'm sorry for your pain. I will keep you in my prayers and send loving, good, healing thoughts your way. May angels attend you. Love you dear niece.
Thanks, sweet aunt of mine. I am fortunate to have so many people holding me in their hearts and minds. 💕
Holly, I had meant to be powering through my first errand of the day by now but this post compelled me to linger in my pjs. I am slowly recovering from five weeks of pneumonia, which will soon be as if it never was. Your disclosure of a life-changing diagnosis, wrapped in poetry like a gift for your readers, has caught me at a moment of heightened awareness to the fragility of our physical selves. I’m particularly moved by the face-washing poem, that cup of palms and the contours traced by your fingers. In memento mori paintings of another time, artists painted skulls. These images reverberate as I read the poem. Underneath the features we meet in the mirror, we all look the same. Your poem reminds me of this centuries-old insight but you, unlike the artists, are also speaking of care—the care we receive from others and give to ourselves. It’s a wonderful poem. I don’t men to diminish the others, only to honor the connection I felt to this one.
Oh, Rona. Thank you so much for staying in your PJs long enough to read this. The face washing was my favorite too. That it conjured for you memento mori paintings has me over the moon. I finished this poem late last night. Something was missing, and I read it over and over again trying to figure out what it was. It was the wide orbs made of brow and cheekbones— which was probably responsible for this conjuring. So it means a lot that you saw it. ♥️💀
I'm so sorry to hear about your diagnosis, Holly. I hope you can find the treatment you need.
And thank you for sharing the beautiful poems. I'm in awe of your talent as well as your courage.
Thank you, Jeffrey. Your words of support mean a great deal to me. As I said in this post, I can’t believe how fortunate I am to have found in the perfect time the community on this platform to give me the boost I need to keep moving toward my writing goals—to say nothing of the wonderful friendships. 🔥
Sending love to you, Holly.
Thank you, Eleanor. 💕
Holly thank you for sharing. I'm sorry to hear you are in pain. The joy of writing coming before the pain really resonated with me. Wishing for healing.
Thank you, Marco! I so appreciate you reading and commenting. To the joy of writing!
“Three and then five more ministrations from a cup not so empty after all.” Simply beautiful Holly. I imagine you feel both relief and hope with a diagnosis/treatment plan for the pain you’ve been suffering for a while now. I worked with a gentleman last year who has AS so if you’d ever like to speak with him, let me know. Sometimes just finding a few fellow travelers in our diagnostic sphere can make all the difference. So grateful to know you and feel honored to be part of this reciprocating filling of cups.🤍
Thank you, thank you, Kimberly. I’ll reach out to you privately about connecting with him for sure.
I have to tell you that finding unfixed not long before this health journey—this message from my body? (I’m not yet settled on what to call it)— has felt meant to be. In the months during which I felt systemic pain moving through my body, but didn’t know why and was having a difficult time getting into the doctors I needed to see and was watching the pain change me, my gait and capability to do what had been part of who I am, I thought so often of the wisdom you’ve gathered through your own story and through sharing those of others. It helped me continue to thrive and see what was beautiful and what was going well. It helped me tame my frustration at not being able to figure out how to get relief so, thank you thank you. I too am honored to be part of the reciprocation. ♥️
@Holly Starley has written a lovely post about a difficult medical diagnosis, “To the Pain.” I don’t know why sharing the knowledge of our wounds helps us and others, but it does: another mystery of our lives as human animals. Aristotle called it catharsis, a releasing or (literally) a cleansing. He was a doctor’s son, and so more than likely witnessed the treatment of wounds.
I would love to know what words other languages have for catharsis that are not a straight translation.
I love this, Elizabeth. It is a concept that’s hard to fully grasp. It can indeed be so comforting, affirming to learn about what’s going on for others who are in pain or facing difficult moments. I think it’s something about how much sharing the load of what must be done as a matter of survival is woven into our blood and bones and DNA. It feels like purpose to share and be shared with. It feels like being a part of something that matters very much, like being seen and trusted and included. Ha. I digress.
Thank you much for reading and commenting, Elizabeth. Let me know what you learn about words for catharsis. :) 💕
Thank you, Holly - more to think about! My favorite thing. 😊
Oh you are a poet! (Not that I should be surprised.) Thank you for your vulnerability my friend - it is a gift we give others when we allow them deeper into our lives. May you find peace, progress in your physical health, and joy, so much joy! Are your symptoms severe enough to inhibit your ability (or belief in your ability) to return to life on the road? I know how every.little.thing. is just a bit harder out there.
Awwww, thank you, Heather! The road is, at the moment, out of the question. But stairs are pretty unmanageable some days. 🤪Sooo … it’s a phase where I am incredibly fortunate to have family and friends open up homes as I figure things out.
AS and what works for each person in terms of pain management is pretty individualized. Once we figure out what my symptoms will respond to, and what my best course of treatment in terms of slowing disease progression is, I very much hope to be able to get back to life roaming, so to speak. And that for sure seems possible from what I’ve researched.
What a post, Holly! I'm so sorry to hear about this health issue--so openly described and then the poetry -- marvelous. You are an absolute must read!
Dah! Mary, you’ve made my day! Rona Maynard once advised us to make a compliments file. To be called a must read by you will go in that file posthaste! Thank you for reading and thank you, thank you for sharing. You are among those I call friend through our writing, and what a gift that is! 😍
Back to you!
I'm sorry to hear this Holly, and relieved you got a diagnosis. I have multi-autoimmune syndrome and while it can suck, the not knowing what was wrong before diagnosis was the worst, psychologically. I hope your treatments are helpful and look forward to reading your essays!
Yes, thank you, Anna. Strangely, I think I experienced the most relief when the blood markers came back showing how much inflammation was in my system. I think maybe I have been worried that I was making too big a deal of the pain. This is a pattern for me. Suck it up as an unfortunate message I’ve killed myself for far too long. Knowing that it’s AS is sinking in as a relief—as I can make a plan going forward.
And I’m certainly aware how fortunate I am that it was only months before I got a diagnosis. I know how often this is not the case with things like auto immune. I hope you didn’t have to suffer in the liminal space between unexplained symptoms and diagnosis for too terribly long.
Thank you for sharing. It’s a lovely thing that we humans are helped by this simple act of knowing each other’s struggles and shoring each other up by our desire to do so.
I enjoy your work and am grateful you’re reading mine! 🥰
I'm having flashbacks to massage therapy school and trying to comprehend the patterns and processes of ankylosing spondylitis, spondylolisthesis and spondylosis. All sounded evil in their own unique ways. I've read about Botox injections being successfully used for migraines and pain management---and there's a lot of research around B27 autoimmune disease as its affecting millions. Sometimes it's not desirable to be one in a million---I'm sorry to hear that you've been weighted with this but it also sounds like you've found the words to stand taller despite it, Holly!
Thank you, Jules! Right? They kind of sound like they crawled out of a cave. And to be honest, they can feel that way. It can mess with your mind to think too hard about the fact that your own immune system is going out your joints, your spine, the very thing that holds you up.
I started researching B27 just recently, mostly because it’s only recently that I’ve decided to accept this is happening. 🤣 I’m being reminded quite often how good we humans are at denial. There has been a lot of me thinking if I can just stop thinking about my joint and the pain, then I can make it go away. This, spoiler alert, has not been successful. And yes, it’s awesome that so much research is going on. I’ve already been mulling over the possibility of finding a study to be a part of.
Thank you ever so much for reading and commenting.
I'm sure you've come to the same conclusion. B27 is way more exciting as a Bingo number! Semi-related, have you watched Cake? Jennifer Aniston's character deals with insurmountable chronic pain---I love everything she does but this one was a deeply serious and memorable turn. I can't believe it's from 2014! https://www.youtube.com/watch?v=P3IsUOSHlnU
Hahaha! I’ll take it as a Bingo number any day of the week. And thanks for the recommendation. I will for sure give it a watch. :)
Here's to some upcoming beach blanket bingo at least. And enjoy your Cake and eat it too! It's a solid gold movie, Holly.
I hear your pain. I have severe RA which effects my feet-hard to walk outside, and my hands-making it difficult to type.
Deciding to begin my Substack brought on fears of failure. To my surprise the positivity I have received has helped me to push through my pain and to look forward, not backwards. 🦕
Oh, Wendy. I’m so sorry. On days when the inflammation is particularly bad, it moves into my hands. I beg it not to. And I use dictation as much as I can to give them relief. So I, too, feel your pain.
I’m so glad you’re here on Substack. I’m so glad you’re looking forward. And I look forward to checking out your writing.
Thank you for reading and for commenting. 🦕😊
Quite lovely. I hope you will write and share more poetry.
Thank you, Gregory! I surprised myself by enjoying the exercise so much. And I much appreciate you reading and commenting. 😊
😁
I’m so sorry you’re going through health issues. I hope you’re not in constant pain. Are you able to sleep? Gorgeous poems. Thank you for sharing.
Aw, CK. Thank you, my friend. A thing about me is that sleeping is my superpower—or one of them anyway ;). There have certainly been nights when my powers have been tested. And I’ve supplemented them of late with Tylenol pm. But I sleep well for the much greater part of the time. For this, I am unspeakably grateful and realize my fortune. Thank you for asking. ♥️
🙏🙏
Holly, these poems are a gift, and I’m wishing you strength and luck as you navigate your diagnosis and the next steps in treatment. I was especially touched by what you said about your gratitude for having created this space pre-diagnosis…that was an especially poignant reflection ❤️ I’ll be keeping you in my thoughts!
Thank you, Maddie. Remember when, a while ago, I was going to reach out to you about different types of collagen. That was during the pre-figuring out. I was wondering, what in the world is going on with my joints? What a crazy time.
I think of you sometimes when I think of my leap and how grateful I am to have taken it. Kind of a Maddie would be so proud type of feeling. Ha! So I love that you noted this. 🥰
I absolutely remember this exchange! While I certainly wish the outcome were different, I’m glad that you’ve found clarity. Without clarity, it can be so hard to process your emotions and start figuring out what’s next.
That second paragraph is making me tear up! 🥹 Absolutely cheering you on with heaps of pride…selfishly, in part, because you’re a beautiful writer and I’m so glad you’re here.