'Like' seems like the wrong button for this. I'm sorry this is happening to you. But, I'm benefitting (as are so many people here) from your survival. I'm rooting for you and the day that this will be behind you. I'm a never say never kind of guy. I also get migraines, except they are silent. I didn't know such things existed until I had my first one and thought I was having a stroke or TI or some such. While debilitating at times, there is no pain. I wish at least that for you. Thanks for sharing this. Your ability to give words to this experience will undoubtedly help someone who feels alone in it.
I’m really grateful you took the time to share your story, my friend. Silent migraines sound so scary. I never knew those were a thing! Your “never say never” spirit shines through, and honestly, that kind of resilience is a beacon for me and others navigating these shadows. Thanks for rooting for me—it means more than you know. 🩵
"That being intensely present can feel like punishment." What a profound revelation. I am sorry for the price you pay for your aliveness, but am so grateful for your ability and courage to share your insights--thoughts that resonate on such a global level--with us.
Your words truly touch my heart, Wendy. That tension between presence and the weight it can carry is something so many of us quietly wrestle with. Thank you for holding that space with me, and I'm SO grateful for your kindness and connection 🩵.
I hear you. I see you. Thank you for sharing this part of your life with us. I feel privileged to witness it. As a fellow migraine sufferer, I get it.
Also, though, I can't stop laughing when I read (twice!) "MacGyver." Seriously, a flashback from the 90s.
What I most appreciate about you, Alex, is the way you can cradle hard things, like death and dying, with humor. I don't have that gift. You do. Thank you for that refreshing levity. It's part of aliveness. :)
Hearing you say that, my friend, really touches me—especially coming from someone who knows the migraine struggle firsthand.
And yes, MacGyver definitely sneaks into my brain when I least expect it! I’m so glad the humor lands with you; holding those heavy things gently with a little laughter feels like a lifeline sometimes.
Thank you for your kind words and for sharing this space with me 🩵
Reading your words, my friend, truly touches my heart. Walking the path of both migraines and brain injury isn’t easy, and your strength shines through your message. I see you too, and I’m so grateful you felt held here. We’re walking this journey together, and that connection means everything to me 🩵
Dear Alex, I am unsure if words can convey how I felt reading your post. The only thing that might come close is a deep feeling of connection and openess to the painful reality of being human. I am extremely lucky to not have to experience chronic pain, but the pain of being human is something I can connect with. Thank you for your writing <3
Thank you for such a heartfelt response, my friend. It means a lot to hear that the way I shared about pain and being human touched something deep for you. That openness to our shared struggles, even when they look different, is where real connection lives. I’m grateful you felt seen and understood here 🩵.
Love this Alex, "Fell in love with questions that don’t have easy answers." Your article grabbed me. I try to understand my Mom's chronic pain that has driven her to a life of addiction and shutting down. Thank you for your courage to show up, seek, and share 💚
Thank you so much for opening up about your Mom’s journey, my friend. That line about loving the questions without clear answers has been a guiding light for me. It’s tough but brave to sit with those uncertainties, especially when pain and addiction are involved. 🩵 Keep holding on with that beautiful heart of yours.
I'm sorry you have to deal with this survival tax. What a great way to put it. So much of what you wrote is completely relatable to me as a cancer survivor.
"The wellness world wants to make this meaningful. They want me to find the gift in the pain, the lesson in the suffering."
Gosh, this is so true in Cancer Land, too. I've been pushing back against this 'cancer is a gift' nonsense for years. It irks me to no end whenever I'm expected to find the gift, the silver linings, the lessons, or whatever else I'm supposed to find after my diagnosis and survival (so far).
I've had no transformation (the good kind anyway), no epiphany, no life-clarifying moments. Sure, I've grown, made new friends, and continue to be grateful. But a gift? No way. I'll never see cancer as any sort of gift.
Survival following any trauma comes with a price. We willingly pay it, but that doesn't mean the price doesn't take a toll.
Thank you for giving us this glimpse into the price you pay for surviving such a horrible injury. Speaking the difficult truths is far more inspiring to me than glossing over the hard realities you now deal with. Hoping you find relief at some point from the awful migraines and that their frequency decreases. Thank you for writing this with such an open heart.
Your words hit home so deeply, my friend. That pushback against the “gift” narrative is something I feel too—it’s exhausting when people expect us to package trauma into neat little life lessons. I appreciate you being so candid about what survival really costs, not just the moments of growth but the ongoing toll. What you share... your weariness? I think that is part of the survival tax. We "willingly pay it," yes. Perhaps the "gift" is aliveness itself. But, I think the rest is a trick of the mind. The toxic positivity. It feels more productive to acknowledge the complex reality. The harshness of the journey. And have gratitude for myself and others.
Thank you for holding space for the hard truths here. 🩵
Alex, my heart is with you. That sounds so intense. And you're so on target. We don't get to choose what occurs in our lives, and sometimes it will be painful. I live with my own version of chronic pain. But the question is whether we can be present to whatever occurs.
Your words hit home, my friend. Living with chronic pain changes everything, doesn’t it? Yet your focus on being present, no matter what, is such a powerful reminder. It’s like meeting life fully, even the hard parts, with open arms. Thank you for sharing that with such honesty 🩵.
“Including the frequencies that feel like punishment.” I’m so sorry you have this issue. I do not deal with chronic pain, but my late husband did, and I saw the toll it took every day. I see you and wish you strength for those excruciating times. I’m so thankful you are still here guiding us.
Your kindness shines through, my friend, especially knowing the weight you carried watching your husband face that pain daily. Those frequencies can sometimes feel unbearable, like a relentless storm, and your compassion means the world to me. It’s such a gift to feel seen, especially by someone who truly understands the toll. 🩵
Every word resonated as I walked a similar path for 30 years. Tried everything and have a closet and cupboard full of hope and kept trying until I found what works for me. I now experience that level of pain rarely and most days can escape the fog. Here’s hoping everyone does.
Wow, 30 years is such a journey, my friend. I love how you put it—a closet and cupboard full of hope—that image really stuck with me. It’s inspiring to hear that you’ve found what works and can now dance through the fog most days with less pain. Holding onto that hope is everything. 🩵
“that turn consciousness into torture“ . This is something I understand in a physical way also. Chronic pain is difficult to express, yet you have done an excellent job with this essay Alexander.
Before all this current stuff my body is going thru, I dealt with migraines as well. There finally turned up a newish medicine that would lower the pain threshold to “liveable” for me, and that was a true gift. The medicine is called Reyvow. I don’t know how it works, but it is different from the others. Perhaps it can help you too.
I also feel the resonance with your heart when you speak of being glad to be alive in spite of the debt you continue to pay. 💞
It has me wondering about the connection to other migraine sufferers in our world… and how many of my spiritual connections here in Stacklandia also get migraines…
I’m grateful you found Reyvow! I'm definitely on that medicine journey right now. Most of the time, my overly expensive medication (Umbrelvy) works wonders. But every once in a while, it decides not to work and I'm in for a two-day'r. I'll look into it!
I'm touched you found resonance with my words. It's so hard to describe chronic pain in a way that people can truly resonate with. If you have it, you get it. If you don't, people often dismiss it. I wanted to try and write something that expressed aliveness in its truest form, but also communicated the depth of chronic pain.
Thank you for being here. I'm always so grateful for you!
Seriously, I am truly sorry you go through this pain and so often. I’m no expert in migraine pain, but your description of a migraine is the best I’ve ever read about them. Having survived traumatic brain injury with your brilliance still in place is a gift to each of us on Substack who read you. I, personally know and love two different survivors of traumatic brain injury within my family circle. I can attest to the fact it is very far from easy for them and their loved ones.As a survivor you must be given credit for all you have accomplished despite the awful pain you endure. My heart cries out for you and how I wish there was something that would ease those nerves from attacking you. If there is, I am unaware of its existence. As I read your story, I could not help thinking that despite your excruciating pain, your life is so important to so many people you have touched, including me. How your story makes a big difference in how I think and how much patience I have attained from the special extraordinary way you have of reaching to the soul of a person.
My very personal comment: I believe in a higher being and everyone created has a purpose and with that purpose choices are attached. You say your brain keeps you alive and I believe you, I just think inside the brain lies your purpose. No explanation is necessary once people find you, they too, will know that you are a survivor with astoundingly beautiful wisdom and empathy that you choose to share. I am so grateful you are alive! ❤️🌹
Your words touched me deeply, my friend. Knowing you see the pain behind the writing, yet still find meaning and patience through my story, means more than I can say 🩵. I’m moved by your close experience with TBI survivors—there’s so much strength in the quiet battles they fight every day. Your belief in purpose feels like a warm light, reminding me that even in the hardest moments, there’s a reason to keep showing up. Thank you for holding space for my journey and for sharing your heart.
Sending you so much gratitude and warmth, my friend, for always showing up and also sharing your beautiful light and caring for the world. 🩵
Thank you for sharing that so honestly, Patricia. I know how heavy those cycles of black depression can feel when it seems like nothing can shift the weight. You’re not alone in this, and I’m holding space for you 🩵
I am so happy you survived and are sharing your words on aliveness that resonate so deeply. But, oh man. I FEEL your words. Your description of having no choice but to be intensely present is spot on. To have these twice a week is a special type of double edged sword of hell. I wish for you to find a semblance of relief.
Thankfully mine have become fewer and further between. The only minor dulling I find when migraines hit is the dark room, everything off, head ice pack, silence, cold compress dipped in ice water w certain essential oils, migravent/tylenol/advil, ginger chews. And wait it out. It’s like full on migraine witchcraft protocol that people without migraines do not comprehend🤪My family knows to leave me to it because I am literally worthless.
This really moved me. I'm just amazed by your aliveness.
I have a history with migraines, and I feel for you. I imagine yours are worse than what I've experienced. I legit wonder how you are able to juggle all the work you do while also dealing with these migraines. That's incredible.
'Like' seems like the wrong button for this. I'm sorry this is happening to you. But, I'm benefitting (as are so many people here) from your survival. I'm rooting for you and the day that this will be behind you. I'm a never say never kind of guy. I also get migraines, except they are silent. I didn't know such things existed until I had my first one and thought I was having a stroke or TI or some such. While debilitating at times, there is no pain. I wish at least that for you. Thanks for sharing this. Your ability to give words to this experience will undoubtedly help someone who feels alone in it.
I’m really grateful you took the time to share your story, my friend. Silent migraines sound so scary. I never knew those were a thing! Your “never say never” spirit shines through, and honestly, that kind of resilience is a beacon for me and others navigating these shadows. Thanks for rooting for me—it means more than you know. 🩵
"That being intensely present can feel like punishment." What a profound revelation. I am sorry for the price you pay for your aliveness, but am so grateful for your ability and courage to share your insights--thoughts that resonate on such a global level--with us.
Your words truly touch my heart, Wendy. That tension between presence and the weight it can carry is something so many of us quietly wrestle with. Thank you for holding that space with me, and I'm SO grateful for your kindness and connection 🩵.
Alex,
I hear you. I see you. Thank you for sharing this part of your life with us. I feel privileged to witness it. As a fellow migraine sufferer, I get it.
Also, though, I can't stop laughing when I read (twice!) "MacGyver." Seriously, a flashback from the 90s.
What I most appreciate about you, Alex, is the way you can cradle hard things, like death and dying, with humor. I don't have that gift. You do. Thank you for that refreshing levity. It's part of aliveness. :)
Hearing you say that, my friend, really touches me—especially coming from someone who knows the migraine struggle firsthand.
And yes, MacGyver definitely sneaks into my brain when I least expect it! I’m so glad the humor lands with you; holding those heavy things gently with a little laughter feels like a lifeline sometimes.
Thank you for your kind words and for sharing this space with me 🩵
As a migraine sufferer and fellow brain injury survivor- thank you for this piece. Thank you for every word. I see you.
Reading your words, my friend, truly touches my heart. Walking the path of both migraines and brain injury isn’t easy, and your strength shines through your message. I see you too, and I’m so grateful you felt held here. We’re walking this journey together, and that connection means everything to me 🩵
Dear Alex, I am unsure if words can convey how I felt reading your post. The only thing that might come close is a deep feeling of connection and openess to the painful reality of being human. I am extremely lucky to not have to experience chronic pain, but the pain of being human is something I can connect with. Thank you for your writing <3
Thank you for such a heartfelt response, my friend. It means a lot to hear that the way I shared about pain and being human touched something deep for you. That openness to our shared struggles, even when they look different, is where real connection lives. I’m grateful you felt seen and understood here 🩵.
"aliveness includes experiences you would never choose but cannot avoid."
Yes.
🩵 Thank you for being here, Nica.
Love this Alex, "Fell in love with questions that don’t have easy answers." Your article grabbed me. I try to understand my Mom's chronic pain that has driven her to a life of addiction and shutting down. Thank you for your courage to show up, seek, and share 💚
Thank you so much for opening up about your Mom’s journey, my friend. That line about loving the questions without clear answers has been a guiding light for me. It’s tough but brave to sit with those uncertainties, especially when pain and addiction are involved. 🩵 Keep holding on with that beautiful heart of yours.
Hi Alex,
I'm sorry you have to deal with this survival tax. What a great way to put it. So much of what you wrote is completely relatable to me as a cancer survivor.
"The wellness world wants to make this meaningful. They want me to find the gift in the pain, the lesson in the suffering."
Gosh, this is so true in Cancer Land, too. I've been pushing back against this 'cancer is a gift' nonsense for years. It irks me to no end whenever I'm expected to find the gift, the silver linings, the lessons, or whatever else I'm supposed to find after my diagnosis and survival (so far).
I've had no transformation (the good kind anyway), no epiphany, no life-clarifying moments. Sure, I've grown, made new friends, and continue to be grateful. But a gift? No way. I'll never see cancer as any sort of gift.
Survival following any trauma comes with a price. We willingly pay it, but that doesn't mean the price doesn't take a toll.
Thank you for giving us this glimpse into the price you pay for surviving such a horrible injury. Speaking the difficult truths is far more inspiring to me than glossing over the hard realities you now deal with. Hoping you find relief at some point from the awful migraines and that their frequency decreases. Thank you for writing this with such an open heart.
Your words hit home so deeply, my friend. That pushback against the “gift” narrative is something I feel too—it’s exhausting when people expect us to package trauma into neat little life lessons. I appreciate you being so candid about what survival really costs, not just the moments of growth but the ongoing toll. What you share... your weariness? I think that is part of the survival tax. We "willingly pay it," yes. Perhaps the "gift" is aliveness itself. But, I think the rest is a trick of the mind. The toxic positivity. It feels more productive to acknowledge the complex reality. The harshness of the journey. And have gratitude for myself and others.
Thank you for holding space for the hard truths here. 🩵
Alex, my heart is with you. That sounds so intense. And you're so on target. We don't get to choose what occurs in our lives, and sometimes it will be painful. I live with my own version of chronic pain. But the question is whether we can be present to whatever occurs.
Your words hit home, my friend. Living with chronic pain changes everything, doesn’t it? Yet your focus on being present, no matter what, is such a powerful reminder. It’s like meeting life fully, even the hard parts, with open arms. Thank you for sharing that with such honesty 🩵.
“Including the frequencies that feel like punishment.” I’m so sorry you have this issue. I do not deal with chronic pain, but my late husband did, and I saw the toll it took every day. I see you and wish you strength for those excruciating times. I’m so thankful you are still here guiding us.
Your kindness shines through, my friend, especially knowing the weight you carried watching your husband face that pain daily. Those frequencies can sometimes feel unbearable, like a relentless storm, and your compassion means the world to me. It’s such a gift to feel seen, especially by someone who truly understands the toll. 🩵
Every word resonated as I walked a similar path for 30 years. Tried everything and have a closet and cupboard full of hope and kept trying until I found what works for me. I now experience that level of pain rarely and most days can escape the fog. Here’s hoping everyone does.
Wow, 30 years is such a journey, my friend. I love how you put it—a closet and cupboard full of hope—that image really stuck with me. It’s inspiring to hear that you’ve found what works and can now dance through the fog most days with less pain. Holding onto that hope is everything. 🩵
“that turn consciousness into torture“ . This is something I understand in a physical way also. Chronic pain is difficult to express, yet you have done an excellent job with this essay Alexander.
Before all this current stuff my body is going thru, I dealt with migraines as well. There finally turned up a newish medicine that would lower the pain threshold to “liveable” for me, and that was a true gift. The medicine is called Reyvow. I don’t know how it works, but it is different from the others. Perhaps it can help you too.
I also feel the resonance with your heart when you speak of being glad to be alive in spite of the debt you continue to pay. 💞
It has me wondering about the connection to other migraine sufferers in our world… and how many of my spiritual connections here in Stacklandia also get migraines…
I’m grateful you found Reyvow! I'm definitely on that medicine journey right now. Most of the time, my overly expensive medication (Umbrelvy) works wonders. But every once in a while, it decides not to work and I'm in for a two-day'r. I'll look into it!
I'm touched you found resonance with my words. It's so hard to describe chronic pain in a way that people can truly resonate with. If you have it, you get it. If you don't, people often dismiss it. I wanted to try and write something that expressed aliveness in its truest form, but also communicated the depth of chronic pain.
Thank you for being here. I'm always so grateful for you!
Seriously, I am truly sorry you go through this pain and so often. I’m no expert in migraine pain, but your description of a migraine is the best I’ve ever read about them. Having survived traumatic brain injury with your brilliance still in place is a gift to each of us on Substack who read you. I, personally know and love two different survivors of traumatic brain injury within my family circle. I can attest to the fact it is very far from easy for them and their loved ones.As a survivor you must be given credit for all you have accomplished despite the awful pain you endure. My heart cries out for you and how I wish there was something that would ease those nerves from attacking you. If there is, I am unaware of its existence. As I read your story, I could not help thinking that despite your excruciating pain, your life is so important to so many people you have touched, including me. How your story makes a big difference in how I think and how much patience I have attained from the special extraordinary way you have of reaching to the soul of a person.
My very personal comment: I believe in a higher being and everyone created has a purpose and with that purpose choices are attached. You say your brain keeps you alive and I believe you, I just think inside the brain lies your purpose. No explanation is necessary once people find you, they too, will know that you are a survivor with astoundingly beautiful wisdom and empathy that you choose to share. I am so grateful you are alive! ❤️🌹
Your words touched me deeply, my friend. Knowing you see the pain behind the writing, yet still find meaning and patience through my story, means more than I can say 🩵. I’m moved by your close experience with TBI survivors—there’s so much strength in the quiet battles they fight every day. Your belief in purpose feels like a warm light, reminding me that even in the hardest moments, there’s a reason to keep showing up. Thank you for holding space for my journey and for sharing your heart.
Sending you so much gratitude and warmth, my friend, for always showing up and also sharing your beautiful light and caring for the world. 🩵
I’m honored and blessed with you in my life Alex, beyond words of gratitude for every ounce of caring you emit in the Universe. ❤️🌼
This sounds a lot like my bouts of black depression. Nothing can break the cycle.
Thank you for sharing that so honestly, Patricia. I know how heavy those cycles of black depression can feel when it seems like nothing can shift the weight. You’re not alone in this, and I’m holding space for you 🩵
I am so happy you survived and are sharing your words on aliveness that resonate so deeply. But, oh man. I FEEL your words. Your description of having no choice but to be intensely present is spot on. To have these twice a week is a special type of double edged sword of hell. I wish for you to find a semblance of relief.
Thankfully mine have become fewer and further between. The only minor dulling I find when migraines hit is the dark room, everything off, head ice pack, silence, cold compress dipped in ice water w certain essential oils, migravent/tylenol/advil, ginger chews. And wait it out. It’s like full on migraine witchcraft protocol that people without migraines do not comprehend🤪My family knows to leave me to it because I am literally worthless.
This really moved me. I'm just amazed by your aliveness.
I have a history with migraines, and I feel for you. I imagine yours are worse than what I've experienced. I legit wonder how you are able to juggle all the work you do while also dealing with these migraines. That's incredible.