This is one of the most powerful and relatable pieces of writing on pain and its role in art. Like Neil in this story, I had to leave my job due to spine problems. Being a creative on my own schedule is the only work I can do. The anecdotes of Dr. S and desperate attempts to find back pain relief were eerily familiar. I'm glad to read that swearing is analgesic. Let the expletives fly!
I enjoyed this essay . It is an interesting topic.
I was a registered nurse for over 40 years so I have seen pain.
3 years ago I fractured my spine so severely it could not be repaired . I lost 70%of that disc and the compression fractures resulted in multiple slipped discs. I also list two inches of height and was only 5 feet to begin with!
The pain I have fluctuates. From a low hum to feeling like I am losing my mind.
My life will never be normal. Everything has to be considered by how much pain I am having that moment or day.
I had a medical professional say to me “ back pain usually means you feel unsupported “
I was so angry. I said “my pain is because my spine is crumbled and parts of it are not in the normal places” .
I am not in the place of thinking in such ways.
I don’t get the nerve blocks and steroids anymore. Those are unpleasant too . They never helped . I was so desperate for relief I subjected myself to multiple visits to get the damn things to a hospital at a distance with no parking . It was not worth it for no return.
My radiologist neurologist interventionist ( now that is a title) was lovely and skilled and tried his best to help me.
I will read more of your stuff to see if I might find some tips to soldier on.
Hi Darcey: I don't like your doctor, the one who dismissed your pain. If you are searching for empathetic care, I can recommend Dr. Vijay Vad, a physiatrist at Hospital for Special Surgery. I arrived in his office in tears, suffering from the excruciating pain of a frozen shoulder. He was calm and reassuring from the moment we first spoke. Pretty much the most compassionate care I have ever received from any doctor.
I have been reading so much lately about women's health throughout history and how our pain has always been discounted. I know this isn't specifically about women's health per say but that just makes me think that it is even more insane the way doctor's treat anyone with chronic pain. Also fascinated by the bit at the end and how we have driven such a divide between emotional healing and "medical" healing when, given everything we know, we should have teams of professionals addressing our health from all angles. We just keep treating the symptoms. Thank you so much for sharing, hoping you find something to relieve your pain.
My beautiful daughter who was born extremely premature almost fifteen years ago lives with chronic back pain.
It all started when she was three and I noticed she was crooked. Her scoliosis was already severe. It’s called infantile early onset scoliosis. To battle this beast she wore a torso cast called a Mehta cast for four years. Getting a new fresh one every three months while they pulled and twisted her body straight to apply the cast and wait for it to harden.
Then at seven she could no longer function in the casts. She has severe intellectual disability and severe medical trauma by this point. Her first surgery was Magec Growing Rods. Magnetic and could be lengthened by a remote control. Eight screws (4 on top and 4 on bottom) in her spine and two rods.
At ten one of the rods snapped off and she didn’t have the ability to communicate this to me. For three weeks she went around with it broken. I saw the tiny changes in her, but nothing obvious. I took her in and discovered the break.
Her second set of Magec Rods went in, bigger screws to hold better.
Age twelve the Magec Rods had reached their end and she had also “finished” growing they said. Full spinal fusion. T2 - L4 with seventeen screws and two rods. Life was okay for a year. Then things began to change.
My daughter went from a happy girl who smiled. I called her a kitten in comparison to some of the more aggressive children with differences I have worked with as a paraprofessional or knew.
Over the last two years the spectrum of my daughter’s behavior swung wildly. I took her to every specialist for answers because every X-ray looked good. Endocrinology, Gynecology, Psychology and Gastroenterology turned up nothing. I pushed and pushed.
Since October of 2025 she’s been on pain management. I went back to orthopedics and said “It’s her spine I just know it is.” MRI but it lit up like the sun, they couldn’t see anything. Discussed a sedated Cat scan because my girl has to be fully sedated for the dentist even. Her trauma is significant at this point and her lack of understanding makes it worse. I asked them to use the Cat Scan images from the summer scare of a possible adrenal gland tumor that turned out to be an accessory spleen.
The orthopedic surgeon called me on a Monday.
I was sitting at my desk, laptop open. Please wait for the host to connect you to the virtual meeting. White coat. Calming voice. He pulled up an image of her spine. “See that tiny spot there?” I followed the arrow. “It's just here on her left superior articular process.” The arrow circles around the white and grey bullseye. Lumbar Vertebrae number five. An osteoid osteoma. “Your girl is double unlucky,” he said. Painful. Rare. How rare. Four Kids. Complicated location. Open her half way up. Cut it out of the bone.
The tumor goes, the pain stops.
Now we wait until March 10th. The day after her birthday for the fourth spine surgery. To cut out the tumor and add four more screws for a grand total of twenty one screws and attach two more smaller rods to the longer rods connecting L5 to the rest of the fusion.
The juxtaposition, relief for answers and the possibility of more pain from more fusion is a hard place to sit and wait.
All I have left at this point is hope.
Pain has done all the things to my daughter in the above words. Reading this has reaffirmed my belief in pain being what changed her into a violent, foul mouthed and angry person. Dependent on opioids at age fourteen. She can’t communicate to me anything beyond, “I have a boo boo I need a bandaid.” She started pointing at her lower back left side saying “hospital.”
It has been one of the hardest chapters in my life with her, having to fight for her to get pain medication. Fight for answers in a system who wants her to tell them what’s wrong. I am her voice and I alone watched her drastically change right in front of me. Her little light faded day by day.
Ten days until surgery as of today. Nine days until her fifteenth birthday.
Pain changes people!
My heart ♥️ goes out to all the chronic pain sufferers.
>>>Pain is claustrophobic, not only because we are trapped in our damaged bodies, but also because our spiritual ideas are shaken, possibly even obliterated. “I know now that nothing lies behind,” Kahlo wrote on her realization that there was nothing beyond our material world. “If there was something, I would have seen it.”<<<
I started getting blinding migraines when I hit puberty, and I have met many Dr S’s along the way. I’ve also met doctors who want to treat the symptoms with all kinds of drugs that have other worrying/scary side effects. I’ve met meditation teachers who said migraines happen because of “too many thoughts.”
It is amazing and sad how much you have to advocate for yourself when the pain is coming from a source that isn’t easy to see or diagnose, and how isolating and lonely it can be when you’re trying to figure out some kind of solution just to exist.
This was a stunning, beautiful essay and I just preordered your book. Can’t wait.
“Pain is widely declared inarticulate for the reasons that we are not supposed to share a language for how we really feel.” That line feels seismic. The silence around pain has always seemed less philosophical and more political. When we can’t name it, we can’t organize around it.
Wow. As if the terrible pain was not bad enough, being dismissed and Unseen by people like Dr S makes everything worse. Our bodies and minds are complicated and we need to try anything that may help. Thank you for this powerful story and best wishes for healing!
Loss of the bursa protecting the disks in the spine ,hip, knees. Was called. bursitis. Now the general term is arthritis. Comes with ageing issues I’m seventy. I’ve recovered from bad back pain before. As a younger man but not the bilateral sacriatical pain now that makes me scream at four am. Tylenol and Advil three times aday and physical therapy helps. Build up your strength and move. Keep the lifting light. But do it properly.
Mentally one of the conditions of this is claustrophobia. It is healing to open up to others about this aspect. Even laughing about this simple twist of life. Emotional strength is required. Hiding and putting time in a bottle is mistake.
Finally now I’m down to 500mg of Tylenol and 400 mg of ibuprofen Advil only in the morning and evening. This a frightening condition I will have the rest of my life. The other choices of expensive statins or surgery that has a high failure rate are not what I want.
I too, can relate to how difficult it is to communicate physical pain. After a car accident my back pain was unrelenting for what felt like forever but was only many months. I tried everything, including steroid shots. Slowly I healed, using PT, and now I seldom have any pain.
amen sister!
This is one of the most powerful and relatable pieces of writing on pain and its role in art. Like Neil in this story, I had to leave my job due to spine problems. Being a creative on my own schedule is the only work I can do. The anecdotes of Dr. S and desperate attempts to find back pain relief were eerily familiar. I'm glad to read that swearing is analgesic. Let the expletives fly!
Yes swearing helps pain! That was one of the many amazing things I found out about the body as I worked on the book. Thank you so much for reading.
This is a high compliment! Thank you!
“a ribbon around a bomb,” That's what you've done here. You put into words what Kahlo put onto canvas. I want your book!
My work here is done!
Thank you Sari!
Thank YOU, Darcey! What a stunning piece. And an incredible book. <3
The community here is fantastic!
Thank you. Very proud of my thoughtful readerships at @Memoir Land and @Oldster Magazine!
Thank you so much !
I enjoyed this essay . It is an interesting topic.
I was a registered nurse for over 40 years so I have seen pain.
3 years ago I fractured my spine so severely it could not be repaired . I lost 70%of that disc and the compression fractures resulted in multiple slipped discs. I also list two inches of height and was only 5 feet to begin with!
The pain I have fluctuates. From a low hum to feeling like I am losing my mind.
My life will never be normal. Everything has to be considered by how much pain I am having that moment or day.
I had a medical professional say to me “ back pain usually means you feel unsupported “
I was so angry. I said “my pain is because my spine is crumbled and parts of it are not in the normal places” .
I am not in the place of thinking in such ways.
I don’t get the nerve blocks and steroids anymore. Those are unpleasant too . They never helped . I was so desperate for relief I subjected myself to multiple visits to get the damn things to a hospital at a distance with no parking . It was not worth it for no return.
My radiologist neurologist interventionist ( now that is a title) was lovely and skilled and tried his best to help me.
I will read more of your stuff to see if I might find some tips to soldier on.
Thank you.
I am so sorry to hear of your pain.
Thank you. It is difficult . I try to remember that everyone has something.
Hi Darcey: I don't like your doctor, the one who dismissed your pain. If you are searching for empathetic care, I can recommend Dr. Vijay Vad, a physiatrist at Hospital for Special Surgery. I arrived in his office in tears, suffering from the excruciating pain of a frozen shoulder. He was calm and reassuring from the moment we first spoke. Pretty much the most compassionate care I have ever received from any doctor.
I have been reading so much lately about women's health throughout history and how our pain has always been discounted. I know this isn't specifically about women's health per say but that just makes me think that it is even more insane the way doctor's treat anyone with chronic pain. Also fascinated by the bit at the end and how we have driven such a divide between emotional healing and "medical" healing when, given everything we know, we should have teams of professionals addressing our health from all angles. We just keep treating the symptoms. Thank you so much for sharing, hoping you find something to relieve your pain.
Thank you for reading! You are so right about all this! Pain is multilayered.
Definitely! and generational (as you mentioned with your mother)
I was first drawn into reading this by the image.
My beautiful daughter who was born extremely premature almost fifteen years ago lives with chronic back pain.
It all started when she was three and I noticed she was crooked. Her scoliosis was already severe. It’s called infantile early onset scoliosis. To battle this beast she wore a torso cast called a Mehta cast for four years. Getting a new fresh one every three months while they pulled and twisted her body straight to apply the cast and wait for it to harden.
Then at seven she could no longer function in the casts. She has severe intellectual disability and severe medical trauma by this point. Her first surgery was Magec Growing Rods. Magnetic and could be lengthened by a remote control. Eight screws (4 on top and 4 on bottom) in her spine and two rods.
At ten one of the rods snapped off and she didn’t have the ability to communicate this to me. For three weeks she went around with it broken. I saw the tiny changes in her, but nothing obvious. I took her in and discovered the break.
Her second set of Magec Rods went in, bigger screws to hold better.
Age twelve the Magec Rods had reached their end and she had also “finished” growing they said. Full spinal fusion. T2 - L4 with seventeen screws and two rods. Life was okay for a year. Then things began to change.
My daughter went from a happy girl who smiled. I called her a kitten in comparison to some of the more aggressive children with differences I have worked with as a paraprofessional or knew.
Over the last two years the spectrum of my daughter’s behavior swung wildly. I took her to every specialist for answers because every X-ray looked good. Endocrinology, Gynecology, Psychology and Gastroenterology turned up nothing. I pushed and pushed.
Since October of 2025 she’s been on pain management. I went back to orthopedics and said “It’s her spine I just know it is.” MRI but it lit up like the sun, they couldn’t see anything. Discussed a sedated Cat scan because my girl has to be fully sedated for the dentist even. Her trauma is significant at this point and her lack of understanding makes it worse. I asked them to use the Cat Scan images from the summer scare of a possible adrenal gland tumor that turned out to be an accessory spleen.
The orthopedic surgeon called me on a Monday.
I was sitting at my desk, laptop open. Please wait for the host to connect you to the virtual meeting. White coat. Calming voice. He pulled up an image of her spine. “See that tiny spot there?” I followed the arrow. “It's just here on her left superior articular process.” The arrow circles around the white and grey bullseye. Lumbar Vertebrae number five. An osteoid osteoma. “Your girl is double unlucky,” he said. Painful. Rare. How rare. Four Kids. Complicated location. Open her half way up. Cut it out of the bone.
The tumor goes, the pain stops.
Now we wait until March 10th. The day after her birthday for the fourth spine surgery. To cut out the tumor and add four more screws for a grand total of twenty one screws and attach two more smaller rods to the longer rods connecting L5 to the rest of the fusion.
The juxtaposition, relief for answers and the possibility of more pain from more fusion is a hard place to sit and wait.
All I have left at this point is hope.
Pain has done all the things to my daughter in the above words. Reading this has reaffirmed my belief in pain being what changed her into a violent, foul mouthed and angry person. Dependent on opioids at age fourteen. She can’t communicate to me anything beyond, “I have a boo boo I need a bandaid.” She started pointing at her lower back left side saying “hospital.”
It has been one of the hardest chapters in my life with her, having to fight for her to get pain medication. Fight for answers in a system who wants her to tell them what’s wrong. I am her voice and I alone watched her drastically change right in front of me. Her little light faded day by day.
Ten days until surgery as of today. Nine days until her fifteenth birthday.
Pain changes people!
My heart ♥️ goes out to all the chronic pain sufferers.
>>>Pain is claustrophobic, not only because we are trapped in our damaged bodies, but also because our spiritual ideas are shaken, possibly even obliterated. “I know now that nothing lies behind,” Kahlo wrote on her realization that there was nothing beyond our material world. “If there was something, I would have seen it.”<<<
I started getting blinding migraines when I hit puberty, and I have met many Dr S’s along the way. I’ve also met doctors who want to treat the symptoms with all kinds of drugs that have other worrying/scary side effects. I’ve met meditation teachers who said migraines happen because of “too many thoughts.”
It is amazing and sad how much you have to advocate for yourself when the pain is coming from a source that isn’t easy to see or diagnose, and how isolating and lonely it can be when you’re trying to figure out some kind of solution just to exist.
This was a stunning, beautiful essay and I just preordered your book. Can’t wait.
“Pain is widely declared inarticulate for the reasons that we are not supposed to share a language for how we really feel.” That line feels seismic. The silence around pain has always seemed less philosophical and more political. When we can’t name it, we can’t organize around it.
Wow. As if the terrible pain was not bad enough, being dismissed and Unseen by people like Dr S makes everything worse. Our bodies and minds are complicated and we need to try anything that may help. Thank you for this powerful story and best wishes for healing!
Thank you! Dr. S was the worst!
Loss of the bursa protecting the disks in the spine ,hip, knees. Was called. bursitis. Now the general term is arthritis. Comes with ageing issues I’m seventy. I’ve recovered from bad back pain before. As a younger man but not the bilateral sacriatical pain now that makes me scream at four am. Tylenol and Advil three times aday and physical therapy helps. Build up your strength and move. Keep the lifting light. But do it properly.
All good advice!
Mentally one of the conditions of this is claustrophobia. It is healing to open up to others about this aspect. Even laughing about this simple twist of life. Emotional strength is required. Hiding and putting time in a bottle is mistake.
Finally now I’m down to 500mg of Tylenol and 400 mg of ibuprofen Advil only in the morning and evening. This a frightening condition I will have the rest of my life. The other choices of expensive statins or surgery that has a high failure rate are not what I want.
I cannot WAIT to read this book. I loved Flash Count Diary soooooo much. Hooray, Darcey!!!!
thank you!
I too, can relate to how difficult it is to communicate physical pain. After a car accident my back pain was unrelenting for what felt like forever but was only many months. I tried everything, including steroid shots. Slowly I healed, using PT, and now I seldom have any pain.
I am so sorry you suffered. It can take a long time for pain to fad.
So true. This happened more than 20 years ago. I am mostly pain-free now, and though sciatica can still recur I know how to lessen it with movement.
Thank you for sharing. Your daughter is so lucky to have you. Very meaningful to read your words.
very helpful!!!