Incredible essay! I am 56, have been active (too much so) all of my life. I suffered 2 fractured vertabra in Aug and found out I have severe osteoporosis - incurable and irreversible. No, it is not the same, or as severe as your malady - but I do understand what a mind f___ it is for person, formally "immortal" to confront age, time, genetics etc in such a jarring way. Thank you for sharing!
One of the most effective elements of this piece is the interlacing of Kate’s commentary with your own. I found her introductory remarks especially moving. Her impulse to tangle an encounter with dictionary definitions with the threads of pain that come from finding one’s heroes stricken was an apt way to deal with the edges of her loss. You do yours justice as well. Wish you would write more about doctoring. Cheers in 2023 from Hawaii.
Hi Dr. Swisher. I found your substack from your sister's tweet, and I just wanted to say thank you to you and your daughter for writing it. My brother, an avid cyclist and hiker who lives in Colorado, was diagnosed with FSH a few years ago. He's been valiantly fighting, joining trials and taking on a leadership role with the Colorado FSH group, but he also struggles to do the things he loves. I wish you both strength and continued courage. Please keep writing!
Beautiful and heart-breaking and warm. There's a real thread of resilience you show going back to your post-bacc days at Santa Cruz. I'd love to hear more about that as well as any practices - aside from biking - that strengthen your positive psychology muscles...because those are clearly just getting stronger & stronger. My students could really benefit from your insider tips!
Love this piece by you. I’ve been going through a similar process to your diagnosis since right before COVID began. They think I have a mild form of lgmd, but genetics aren’t showing them anything definitive.
What are the resources that you most recommend for someone at the beginning of the journey you’ve been on? Diet, exercise, any resources that could help delay damage would be greatly appreciated. My neurologist was basically like no treatment, no cure, see you next year. As a person accustomed to action and agency, I would love to feel like I can help at the margins, and I’m not a dr, so combing through the snake oil online is a nightmare.
Sooooo moving ... I so admire your courage, your strength & your humor. You never know what someone is going through, even when they're a jovial wisecrack ... So much respect to you, Dr. Swisher.
Incredible essay! I am 56, have been active (too much so) all of my life. I suffered 2 fractured vertabra in Aug and found out I have severe osteoporosis - incurable and irreversible. No, it is not the same, or as severe as your malady - but I do understand what a mind f___ it is for person, formally "immortal" to confront age, time, genetics etc in such a jarring way. Thank you for sharing!
One of the most effective elements of this piece is the interlacing of Kate’s commentary with your own. I found her introductory remarks especially moving. Her impulse to tangle an encounter with dictionary definitions with the threads of pain that come from finding one’s heroes stricken was an apt way to deal with the edges of her loss. You do yours justice as well. Wish you would write more about doctoring. Cheers in 2023 from Hawaii.
What a heartfelt and vulnerable essay. Wishing you all the best.
Hi Dr. Swisher. I found your substack from your sister's tweet, and I just wanted to say thank you to you and your daughter for writing it. My brother, an avid cyclist and hiker who lives in Colorado, was diagnosed with FSH a few years ago. He's been valiantly fighting, joining trials and taking on a leadership role with the Colorado FSH group, but he also struggles to do the things he loves. I wish you both strength and continued courage. Please keep writing!
Beautiful and heart-breaking and warm. There's a real thread of resilience you show going back to your post-bacc days at Santa Cruz. I'd love to hear more about that as well as any practices - aside from biking - that strengthen your positive psychology muscles...because those are clearly just getting stronger & stronger. My students could really benefit from your insider tips!
Your piece should remind us all to treat Strangers Passers-By gently. Courtesy at check outs,
on Customer Service Lines (no matter how annoying) and random encounters.
No one knows what they are currently dealing with, and few are without.
We can add or subtract from their day.
Love this piece by you. I’ve been going through a similar process to your diagnosis since right before COVID began. They think I have a mild form of lgmd, but genetics aren’t showing them anything definitive.
What are the resources that you most recommend for someone at the beginning of the journey you’ve been on? Diet, exercise, any resources that could help delay damage would be greatly appreciated. My neurologist was basically like no treatment, no cure, see you next year. As a person accustomed to action and agency, I would love to feel like I can help at the margins, and I’m not a dr, so combing through the snake oil online is a nightmare.
Sooooo moving ... I so admire your courage, your strength & your humor. You never know what someone is going through, even when they're a jovial wisecrack ... So much respect to you, Dr. Swisher.