Oh…Alex… this had to be a shattering experience for you. Being confronted with tasks that stripped an illusion of healing… being thrown back in time to post accident headaches, areas of dysfunction in processing and emotions… At the same time the results are what you need for your lawyers. And you are not done yet. Brains are interesting organs because when new pathways are created it can help you function at a higher level… at least when not overstressed. Learning to find the balance is also a part of your healing journey. I’m confident that unwanted symptoms will diminish as your overstressed body finds inner balance and peace. 💞
Nancy, you caught the strangest part of it: the same days that stripped the illusion produced exactly the pages the case needed. I still don't know how to hold that pairing, and I've stopped rushing myself to. Thank you for seeing me 🩵
I wish that there was something we could do to support your journey. I’m glad Louis is there to remind you that no one other than you gets to tell you who you are.
Thank you, Teyani. And Luis is good at that, mostly by saying nothing. The night after testing I started a sentence twice 😂, and he just let both versions count. 🧡
Alex, your writing is deepening. I see it every time you post. I've thought so much of you lately, noticed your absence here on Substack. I want to thank you for the way you show up authentically yourself in this space. It strengthens me so often when I want to hide.
And I feel what you wrote, every word. I have been immersed in the bureaucracy of many systems myself, particularly when the legal system and medical review boards intersect with the US health care system for our daughter Sarah's care. Just returned home from a weeklong vacation to one such letter, modifying her weekly counseling appointment to every other week because of ABA - and she hasn't been in ABA for YEARS.
So I understand how wearisome fighting these battles can be. I know how discouraging.
Just know you have many of us in your corner. Sending you love. XO
Jeannie, thank you for noticing the quiet. This series takes something the (used to be weekly...but they have been too hard to write weekly) essays don't, and I've been pacing myself around it.
The letter you came home to is exactly the thing: a decision about Sarah's care built on a record that stopped being true years ago. That's the part that wears you down, fighting the paper version of your own life. You've been doing it far longer than I have, and for someone else, which is its own weight. I'm glad you're in my corner. I'm in yours too. 🧡 Love you!
I felt the story in my whole body while reading Alex. Thank you so much for sharing. To give permission to say that "it's okay if you haven't actually come how far you thought you've come". Because in different ways we always make this difference in perception right?
Yes, I think we do, and usually in the direction that lets us keep going. The version I got from the neuropsychologist is that the brain files its accommodations under recovery because looking at the gap every day would cost too much. What surprised me was that finding out didn't erase the progress. The record can be wrong while the living stays real.
That line about being “the historian of your own body” while your brain quietly routes around the damage feels like the exact texture of a life that has been performing recovery instead of letting the injury be fully seen.
You just named that unnerving moment when a brilliant, high‑functioning nervous system realizes it has been gaslighting itself for survival, and that’s exactly where body‑led aliveness, wholehearted rest, and a more honest record of what her system still carries can finally start to reshape a life that includes her actual limits instead of only her heroic adaptations.
Alex, Testing of any kind can be so stressful. And this much? My heart went out to you with every paragraph. I love how you harmonized setting the record straight without dismissing the recovery you actually made.
Thank you, my friend. That balance took the full two weeks of fog to find. The first draft of me wanted to pick one, either the recovery was fake or the report was cruel, and neither turned out to be true. You're right about the testing itself, too. Nothing about a script and a timer is neutral, whatever it's built to measure.
I love that you founded the Department of Aliveness. What a beautiful reminder about the parts of your brain that are flourishing. Which in way diminishes that you have suffered real injury. All the best to you in your recovery and your lawsuit.
Thank you, Donna, and no correction needed; I read it the way you meant it the first time. 😂 You're right that parts of this brain are flourishing. The strange discovery was that the flourishing and the damage share an address, and both are real.
That read as so hard, I can only imagine how hard it really was. I see the positives in the findings from the insurance standpoint, and your standpoint. I just hate that it was so hurtful for you to go through it. Love, Virg
Oh…Alex… this had to be a shattering experience for you. Being confronted with tasks that stripped an illusion of healing… being thrown back in time to post accident headaches, areas of dysfunction in processing and emotions… At the same time the results are what you need for your lawyers. And you are not done yet. Brains are interesting organs because when new pathways are created it can help you function at a higher level… at least when not overstressed. Learning to find the balance is also a part of your healing journey. I’m confident that unwanted symptoms will diminish as your overstressed body finds inner balance and peace. 💞
Nancy, you caught the strangest part of it: the same days that stripped the illusion produced exactly the pages the case needed. I still don't know how to hold that pairing, and I've stopped rushing myself to. Thank you for seeing me 🩵
Many compassionate ((hugs)) from afar my friend.
I wish that there was something we could do to support your journey. I’m glad Louis is there to remind you that no one other than you gets to tell you who you are.
Thank you, Teyani. And Luis is good at that, mostly by saying nothing. The night after testing I started a sentence twice 😂, and he just let both versions count. 🧡
Alex, your writing is deepening. I see it every time you post. I've thought so much of you lately, noticed your absence here on Substack. I want to thank you for the way you show up authentically yourself in this space. It strengthens me so often when I want to hide.
And I feel what you wrote, every word. I have been immersed in the bureaucracy of many systems myself, particularly when the legal system and medical review boards intersect with the US health care system for our daughter Sarah's care. Just returned home from a weeklong vacation to one such letter, modifying her weekly counseling appointment to every other week because of ABA - and she hasn't been in ABA for YEARS.
So I understand how wearisome fighting these battles can be. I know how discouraging.
Just know you have many of us in your corner. Sending you love. XO
Jeannie, thank you for noticing the quiet. This series takes something the (used to be weekly...but they have been too hard to write weekly) essays don't, and I've been pacing myself around it.
The letter you came home to is exactly the thing: a decision about Sarah's care built on a record that stopped being true years ago. That's the part that wears you down, fighting the paper version of your own life. You've been doing it far longer than I have, and for someone else, which is its own weight. I'm glad you're in my corner. I'm in yours too. 🧡 Love you!
Wow, Alex, you are spot on with this description: “A decision about care built on a record that stopped being true years ago.”
Why must we fight ghosts?
The systems are designed to keep us tired, I believe. It’s oppressive.
My heart hurts so much for what you are enduring right now.
Love you, too, friend. XO
I felt the story in my whole body while reading Alex. Thank you so much for sharing. To give permission to say that "it's okay if you haven't actually come how far you thought you've come". Because in different ways we always make this difference in perception right?
Yes, I think we do, and usually in the direction that lets us keep going. The version I got from the neuropsychologist is that the brain files its accommodations under recovery because looking at the gap every day would cost too much. What surprised me was that finding out didn't erase the progress. The record can be wrong while the living stays real.
That line about being “the historian of your own body” while your brain quietly routes around the damage feels like the exact texture of a life that has been performing recovery instead of letting the injury be fully seen.
You just named that unnerving moment when a brilliant, high‑functioning nervous system realizes it has been gaslighting itself for survival, and that’s exactly where body‑led aliveness, wholehearted rest, and a more honest record of what her system still carries can finally start to reshape a life that includes her actual limits instead of only her heroic adaptations.
Thank you 🧡 I appreciate you being here with us.
Alex, Testing of any kind can be so stressful. And this much? My heart went out to you with every paragraph. I love how you harmonized setting the record straight without dismissing the recovery you actually made.
Thank you, my friend. That balance took the full two weeks of fog to find. The first draft of me wanted to pick one, either the recovery was fake or the report was cruel, and neither turned out to be true. You're right about the testing itself, too. Nothing about a script and a timer is neutral, whatever it's built to measure.
I love that you founded the Department of Aliveness. What a beautiful reminder about the parts of your brain that are flourishing. Which in way diminishes that you have suffered real injury. All the best to you in your recovery and your lawsuit.
Thank you, Donna, and no correction needed; I read it the way you meant it the first time. 😂 You're right that parts of this brain are flourishing. The strange discovery was that the flourishing and the damage share an address, and both are real.
Meant to say "which in no way..." App is not letting me edit directly for some reason.
❤️Thank you for the genuine care.Please keep shining 🕊️❤️🌟!
Thank you, Nancy. I'll keep at it. 🧡 You keep shining too.
That read as so hard, I can only imagine how hard it really was. I see the positives in the findings from the insurance standpoint, and your standpoint. I just hate that it was so hurtful for you to go through it. Love, Virg