I really appreciate you saying that. This is a high pain day. Kindness of all kinds is appreciated.
Suffering of the long term and probably permanent variety has taught me so many lessons I’m grateful for. I’m more empathetic and kinder. I’m more resilient than I thought possible. I see the little miracles. I find a reason for gratitude in everything. I don’t anything for granted. My life is poignant and precious.
I do feel bad about being very expensive to treat. But I found a way to keep working. I contribute as much as I can. Today I have much work to do. Maybe there will be time for whining tomorrow. 😉
I know from personal experience what a challenge chronic (long-term) illness and disability can be. Your capacity for gratitude and grit in the face life's daily challenges is nothing less than exemplary.
Thank you for speaking out! Your inspiration is invaluable . . . .
Thank you very much. I swear I wasn’t fishing for compliments. I just wanted to mention euthanasia, even when things suck, is extreme. Life is so precious.
The biggest lessons I’ve learned are so simple. I used to be a highly capable knowledge worker. I’m still a knowledge worker, but less. Much. My brain isn’t always reliable. My pain and fatigue levels are unpredictable. As an employee I’m a bad bet. It’s why I work for myself. Flexibility is my greatest need.
But - big but - when my identity was shredded and unrecoverable I discovered something important. There’s exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out that’s my actual superpower.
100% ~ This is actually the key, and I'm so glad you articulated it, Emily!
> "When my identity was shredded and unrecoverable, I discovered something important" . . . .
Yes! We are so much more than we imagine ourselves to be . . . . and, in the experience of unrelenting suffering, you found the golden nugget:
> "There’s exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out that’s my actual superpower."
Beautifully said, Emily. Thank you again for sharing your wisdom, compassion and insight.
In fact, may I quote you, Emily? I maintain an online library that includes resources related to neuroplasticity and "invisible" chronic illness, and I'd *love* for others to benefit from your wisdom and experience, if you are willing?
If you prefer, I can share your comments anonymously ~ without your name or the link to your comments here in this discussion, or with your initials only.
Absolutely you can quote me if you think it’s helpful. Anonymity not required. Being me is just fine.
I imagine as a person who writes and speaks for a living I could be more eloquent if I tried harder. Or wasn’t working on a project while messing around on Substack. (Not now. At 4 am this is just ADHD taking advantage of some pain induced insomnia.)
Proprioception and I have a difficult relationship. Having been through vestibular rehabilitation therapy twice and knowing the power of a MMOO oral splint and insole orthotics combo for orienting in space, I find neuroplasticity utterly fascinating. I keep meaning to fill that prism glasses Rx … 🙂
Invisible chronic illness is pretty much my theme. I have, without hyperbole, around 100 Dx codes. The main grouping that beget all the secondary and tertiary bedevilments is hypermobile Ehlers Danlos Syndrome with Mast Cell Activation Syndrome and various dysautonomias related to connective tissue failures (Sjogrens, cardiac weirdness, swallowing issues, airway occlusion, thoracic outlet syndrome). Those three sets of issues - hEDS/MAST/dysautonomia - will someday get grouped under their own (hopefully cool) name. It’s global, it’s end stage for many failed joints, no major bodily system remains unaffected. We are having fun over here. You’d be amazed at all I CAN do. I am.
This will be the source of much screwing off. ADHD is so excited! (hEDS and ADHD are dancing partners. Those of us with aura and synesthesia are especially odd. We’re on the neurodiverse side of fun. Or as my sister put it, “Don’t take LSD. It’s a waste of good drugs you could otherwise be sharing with someone less fortunate than you.” Too bad about all the migraines, though. Nothing is free, I suppose.)
Thank you, Metta, for putting together such an extensive body of work. Thank you for your important contribution, both from the medical and spiritual perspectives. (Same thing, I know.)
I am so glad you are here. You are a reminder to the world that life doesn't require the absence of suffering to be worth living.
I really appreciate you saying that. This is a high pain day. Kindness of all kinds is appreciated.
Suffering of the long term and probably permanent variety has taught me so many lessons I’m grateful for. I’m more empathetic and kinder. I’m more resilient than I thought possible. I see the little miracles. I find a reason for gratitude in everything. I don’t anything for granted. My life is poignant and precious.
I do feel bad about being very expensive to treat. But I found a way to keep working. I contribute as much as I can. Today I have much work to do. Maybe there will be time for whining tomorrow. 😉
Emily, you are a true hero, in my book! 💟🌷🙏
I know from personal experience what a challenge chronic (long-term) illness and disability can be. Your capacity for gratitude and grit in the face life's daily challenges is nothing less than exemplary.
Thank you for speaking out! Your inspiration is invaluable . . . .
Thank you very much. I swear I wasn’t fishing for compliments. I just wanted to mention euthanasia, even when things suck, is extreme. Life is so precious.
The biggest lessons I’ve learned are so simple. I used to be a highly capable knowledge worker. I’m still a knowledge worker, but less. Much. My brain isn’t always reliable. My pain and fatigue levels are unpredictable. As an employee I’m a bad bet. It’s why I work for myself. Flexibility is my greatest need.
But - big but - when my identity was shredded and unrecoverable I discovered something important. There’s exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out that’s my actual superpower.
Pretty cool, huh?
100% ~ This is actually the key, and I'm so glad you articulated it, Emily!
> "When my identity was shredded and unrecoverable, I discovered something important" . . . .
Yes! We are so much more than we imagine ourselves to be . . . . and, in the experience of unrelenting suffering, you found the golden nugget:
> "There’s exactly nothing wrong with my ability to love, to worship, to demonstrate compassion. My heart (the emotional part, anyway) is, if anything, enhanced. Turns out that’s my actual superpower."
Beautifully said, Emily. Thank you again for sharing your wisdom, compassion and insight.
In fact, may I quote you, Emily? I maintain an online library that includes resources related to neuroplasticity and "invisible" chronic illness, and I'd *love* for others to benefit from your wisdom and experience, if you are willing?
> DiscoveryNow.net
If you prefer, I can share your comments anonymously ~ without your name or the link to your comments here in this discussion, or with your initials only.
Just let me know what you prefer.
Thanks 💟
Metta,
Absolutely you can quote me if you think it’s helpful. Anonymity not required. Being me is just fine.
I imagine as a person who writes and speaks for a living I could be more eloquent if I tried harder. Or wasn’t working on a project while messing around on Substack. (Not now. At 4 am this is just ADHD taking advantage of some pain induced insomnia.)
Proprioception and I have a difficult relationship. Having been through vestibular rehabilitation therapy twice and knowing the power of a MMOO oral splint and insole orthotics combo for orienting in space, I find neuroplasticity utterly fascinating. I keep meaning to fill that prism glasses Rx … 🙂
Invisible chronic illness is pretty much my theme. I have, without hyperbole, around 100 Dx codes. The main grouping that beget all the secondary and tertiary bedevilments is hypermobile Ehlers Danlos Syndrome with Mast Cell Activation Syndrome and various dysautonomias related to connective tissue failures (Sjogrens, cardiac weirdness, swallowing issues, airway occlusion, thoracic outlet syndrome). Those three sets of issues - hEDS/MAST/dysautonomia - will someday get grouped under their own (hopefully cool) name. It’s global, it’s end stage for many failed joints, no major bodily system remains unaffected. We are having fun over here. You’d be amazed at all I CAN do. I am.
❤️ Em
OMG - cool website!
This will be the source of much screwing off. ADHD is so excited! (hEDS and ADHD are dancing partners. Those of us with aura and synesthesia are especially odd. We’re on the neurodiverse side of fun. Or as my sister put it, “Don’t take LSD. It’s a waste of good drugs you could otherwise be sharing with someone less fortunate than you.” Too bad about all the migraines, though. Nothing is free, I suppose.)
Thank you, Metta, for putting together such an extensive body of work. Thank you for your important contribution, both from the medical and spiritual perspectives. (Same thing, I know.)
PS I hope you are well, happy and blessed.
Good way to look at our lives.