Hello back to you! Are you familiar with Anne of Green Gables? I’m unsure of her popularity outside of Canada.
I’m working on an MCAS article that I think will resonate extra with my redheaded sisters lol. Far too often our reactions get blamed on being ginger & the MCAS gets missed!
Yes, the story is known here and wouldn’t you know, I just read it for the first time last year, at age 48? 🤭
I’m especially interested in MCAS stuff. My immunologist just tested me for hereditary alpha tryptasemia, as my serum tryptase numbers continue to be quite high for someone who has been treated for MCAS for almost four years now. She said if I have the hereditary marker, it could explain why I became a long hauler. Fascinating stuff!
Did you enjoy it? I adored the 1980s television version we watched in school growing up … and then when I was reviewing theatre I got to meet the actor who played Gilbert Blythe. What a fan girl moment for me!
I have to get cracking on my MCAS piece! It’s hard because I’ve basically written three threads in that “other place” that I want to combine into one article - but I’m having a hard time doing it without it seeming clunky. Perhaps a multi part feature on MCAS might make more sense?
I can't say enough how glad I am you're here and that I found your Substack. You put into words so many of the things I'm thinking and feeling perfectly. Substack was the first place where I found not just one person but multiple people who felt the same way I did about COVID and who didn't make me feel irrational for still being COVID safe like so many have. Finding that kind of understanding is immeasurable in its value so I thank you so much for being one of those people and for speaking up and sharing your story. You motivate me to keep doing the same 🫶 (Also, that Anne of Green Gables series was one of my absolute favorites! Still is)
Thank you so much Jackie - this made my heart happy! There’s no bigger compliment for a writer than knowing they’re putting into words what many people are feeling and can’t express.
If you liked the Anne series - see if you can find the 1980s miniseries - it’s soooo good! My mom had it on VHS and would always put it on when I was home sick.
I think that's the one I watched as a kid (I watched part of the Netflix one but never finished it). Pretty sure it was on public television of some sort. Your mom was so smart to put it on VHS. I bet the library might have it but definitely have to do some digging so I can watch it again 😊 I was a big fan of Avonlea too (this whole conversation just unlocked a whole bunch of core memories lol)
That was probably it! It was 2 hours for Anne of green gables and then another 2 hours for the sequel (which had her as a teacher in Halifax and more of my crush Gilbert Blythe). I met and interviewed him years ago as part of my work as a theatre critic - totally fan girled. I swear I was more weak kneed with him than with Hugh Jackman and Elton John. I’m an Anne girl!
Omg you got to meet Gilbert?! I had the biggest crush on him from that series too. That's so cool! If you also met Hugh Jackman and Elton than I am fan girling over your fangirling lol. I really respect that you took the path of being a journalist. I was originally a journalism major in college but the teacher of the program scared me so I switched to creative writing. I loved that but also wonder what would have happened if I'd stuck with journalism.
Why did they scare you? It definitely wasn’t easy (or lucrative). I had a day job the entire time - and was exhausted 24/7. But I also had some incredible experiences!
I did indeed interview Hugh and Sir Elton. Elton was hilarious because I got captured on the front page of our biggest newspaper right after doing the interview. I was the only woman there - in a little black dress and very high heels on a crowded red carpet surrounded by men and cameras. I stuck out like a sore thumb but I treasure that photo so much!
It's funny, I can account it to one moment...the professor said if we made one mistake in an article she would fail us. Which at the time, I was like "nope, that's terrifying and too much pressure", but now looking back as an adult, she was just trying to prepare us to work in the industry I think.
Love that story about the Elton photo too! Thanks for sharing.
It’s still one of my favourites too! I also loved the Netflix version. It remained very true to the original but I felt it enhanced it in a really wonderful way.
Thank you for this thorough post and invitation to share. I am @singlemumspeaks. I live in the UK and am moving slowly from denial into acceptance of chronic health issues although I have been suffering undiagnosed for years. I have endo and a whole host of other stuff including chronic pain I think exacerbated by recent medical interventions. I have a feeling I may have MCAS but still very early days of exploring it all. I am finding solace, hope and inspiration in the writers like yourself talking so openly about chronic illness here on Substack x
Hi Chloe! Thank you for introducing yourself! I have endo as well - and it’s something I plan to write more about in the future.
As for MCAS - that one is a beast. I’ve been struggling for years and am sketching out a 3 part series about it to try and help people new to the MCAS world.
I know it’s hard to move through denial and into acceptance - but I really feel like things get easier when you get there. We fight our bodies so hard when in denial - they appreciate the break when we reach acceptance
Thank you. I know that you are right when it comes to acceptance/denial. I look forward to reading what you write on MCAS. It definitely does feel like a beast if that is what ai have x
The good news is that it can improve a lot with the right combo of meds and diet/lifestyle changes… it’s just unfortunate how hard it can be to go through the trial and error.
Okay that's great to know. By meds do you mean supplements or allopathic medication? So far the doctors I have spoken to seem to be unaware of MCAS but maybe I am just talking to the wrong people.
You may be talking to the wrong people. You really need a savvy doc who’s up on all the treatment options. There’s definitely natural treatments that can help (as well as OTC stuff you can try on your own) but a prescription mast cell stabilizer was the biggest game changer for me and I’m lucky to have a doctor willing to experiment as there are a LOT of med options and combinations.
Hi Hon - A beautiful article. Thank you for sharing more of your journey and experience.
Right there alongside you—Gumption, Grit, support, reminding you to rest, tag-teaming, AND the great show tunes and music! I might have to put Dear Evan Hansen (You Will Be Found) on later
I loved that version of Anne of Green Gables. The actress who played Marilla was so good.
I’m so glad you get the “gumption” reference! Apparently it’s not a common word anymore. Whenever I use it I think of Kate Winslet in “The Holiday” and how she found her gumption.
Oh yes! My memory of watching films is so sketchy I normally can’t remember a single thing that happened and can watch the whole thing again as if for the first time - but that one I just loved that moment!
That’s ok! The gumption line was the most important part!
Also I find the more symptomatic I am the more I gravitate towards films I’ve seen a million times. I find it less stressful when I know what’s going to happen and I don’t have to concentrate as hard
Glad you are embracing doing something you love and able to do it so actively. I appreciate your helpful tips and tricks and stories and look forward to more. Best wishes.
My son was injured with a gunshot wound to the neck when he was 18. 30 years later, he is still determined to live independently. That's getting harder for him, but I am able to provide caregiving support on a regular basis because I retired from teaching (37 years as a Reading Specialist) in May. Your journey is unique. So was his. So is mine. Our stories need to be told. I, too, am a writer. My goal is to engage in it more fully with an eye toward publishing a book of essays.
I love your open nature and your welcoming spirit! Thank you!
Hi Mickey! Thank you! What a lovely message this was to receive. I'm always so happy when I hear that my story is resonating with people and that they value the unique perspectives we can all bring to the table.
I'm sorry to hear about your son - and I hope that some of my stories can help him as well. There's a lot of us within this community who aren't living as independently as we would like to be - but who are still trying to maintain our autonomy where we can. A lot of great caregivers too!
Autonomy leads to quality of life. At times, he expresses regret regarding how his condition has impacted mine. He doesn't realize how his heroic, courageous determination feeds forward my commitment to supporting him in that. As Kamala Harris says, "A true leader lifts up those around them." He and I do that for each other. We lift one another to become a better person. Every so often I start to sing the song, "On Eagle's Wings"
"And I will raise you up on eagle's wings!..." and we laugh so hard.
Thank you for replying to me. You have uplifted me with this delicious aspect of attention.
I’m so glad I was able to lift you up - and that your son lifts you up! It’s so difficult when we’re reliant on others for basic survival and activities of daily living - it can become hard not to question if we’re negatively impacting their life.
You’ve lifted me up too by telling me how my writing helps you AND how your son inspires you! It helps with my guilt over needing so much help - hopefully my caregivers are also inspired.
Very glad I found you on the Stack! Writing here was a good way to transition out of being a cancer patient and back into the world and for the most part it's a great place to be. I didn't know you had moved to advocacy work and I am thrilled you are doing it. You're such a great writer and this work is so needed. I'm terrible at keeping up with my subscriptions but I will do my best to keep up with yours!
Aww so nice to see you MK! And thanks for the kind words. It was a big leap to do this - and while I share on twitter I haven’t posted it on fb because I’m still deciding what amount of anonymity I need to be comfortable with sharing these stories. I’ve been advised I should consider dropping the “Broadwaybabyto” in favour of my name of a pen name - but it breaks my heart a bit to let her go. Still - I have to be honest with myself that I’m unlikely to be back in the theatre anytime soon and people here might appreciate or prefer an actual name.
It's a tricky call. I can see the value of separating out the identities since they are such different things but they're all you. And who knows, maybe things dovetail back. Maybe what you're sharing now becomes a basis for a show farther down the line. Or maybe technology allows you the space to do reviews again, possibly of video content. Everything is shifting and changing and we don't know what will happen. Two years ago I didn't think I'd find myself back in the theatre world again and here I am.
So ultimately, get still and sit with it. See what comes up and feels true to you.
Yeah it really is tricky. I still feel like Broadwaybabyto … because you don’t have to go to the theatre to love the theatre! She will always be a part of me and I’m proud of her - so I’m not sure I want to change that!
Then you don't need to. It'll be easy enough to tie your name to the handle should you need to. And I do like the idea that it's your love for theatre that is defining your writing career, no matter the hard things you're writing about. More about you than your health challenges.
That’s exactly it! My love for the theatre is what gave me my empathy 100% - and my time writing about theatre made me a better writer. It’s a piece of my story. Though I do miss it dearly - why aren’t more theatres offering digital performances?
That's awesome - thank you for telling me! Notes is generally very quiet for me so I'm never sure if my posts are being seen... I'm glad they reached you!
Hi! Fellow writer, fellow chronic illness advocate. I relate to much of what you have said. Writing has helped me cope... if it helps even one person that is a bonus.
There is nothing easy about any of this... I do what I can when I can and that is enough...
Substack: View from the Trenches of Myalgic Encephalomyelitis.
Hello! Thank you for commenting - I know it takes precious spoons!
I’m glad writing helps you cope as well - it really is a wonderful too when we have the energy to access it… and I know many disabled patients have found great comfort in the writing and guidance of those who came before!
I’m not sure to be honest - you may have to do it via the web browser on your phone instead of in the app. My publication doesn’t have a paid option though 😊
Thanks for the intro and I love your style of writing! What resonated with me was your bit on why you write. I feel likeminded that "writing about my experiences keeps me grounded to the outside world. It allows me to take back some power when bad things happen to me. Makes me feel as though I’m taking my hardest moments and turning them into something positive." While I dont always see the positive, Ive found hope in calling it my adventure - complete with every feeling in between good and bad.
Hi Ellen - thank you for introducing yourself and for the lovely comment! I’m glad that part resonated with you. I think writing and art and song and all matters of creative endeavours can be so healing. They’re a unique way to touch other people as well - and challenge them to maybe think a bit differently about a certain issue or subject.
That’s my goal here - to challenge people to see disability and chronic illness in a more tolerant, accepting and loving light.
Great post! I didn't really start writing about disability issues for myself (and not my former employer) until 1) my parents were gone, and 2) my employer couldn't fire me for calling them out on their bullshit/hypocrisy/lying.
I am sorry you have lost friends, but they clearly really get you and your life experience anyway.
Go you my disabled ginger warrior friend !! I love this powerful post and I am SO GLAD you are here!!! Its writers with presence like yourself that I am in awe of, that I’m learning from and that are helping to lead the way. I e def seen in your posts where I connect to your warrior strength and bravery. I can see how activating some of what you share is for those on the planet who are not ready to receive it. I deeply admire your ability to take the stand and voice your truth anyway. It helps me a great deal because I’ve had so much fear over repercussion myself. I figured I should be compliant about some of the research I’ve done and what it’s uncovered. But when I was communicating with my dad in the spirit world the other month and asked him “what impact will my books have on the world dad?” He responded “catastrophic and cataclysmic” and that I’m here to “create new paradigms in the way we look at health, healthcare, diet, malfunction, our way of seeing, being and believing”. Uniting with warriors like yourself, ready and committed to shining a light and unearthing all that’s been laid dormant and suppressed for so long is really supporting me to stand in my own power. So I’ll be right with you every step of the way. Cheering you on, lifting you up when you are down. Because, together, I firmly believe we can bring about change. We can create shifts of some magnitude and our work will go on to leave a long lasting legacy.
Hi from your fellow disabled ginger! 👩🏻🦰
Hello back to you! Are you familiar with Anne of Green Gables? I’m unsure of her popularity outside of Canada.
I’m working on an MCAS article that I think will resonate extra with my redheaded sisters lol. Far too often our reactions get blamed on being ginger & the MCAS gets missed!
Yes, the story is known here and wouldn’t you know, I just read it for the first time last year, at age 48? 🤭
I’m especially interested in MCAS stuff. My immunologist just tested me for hereditary alpha tryptasemia, as my serum tryptase numbers continue to be quite high for someone who has been treated for MCAS for almost four years now. She said if I have the hereditary marker, it could explain why I became a long hauler. Fascinating stuff!
Did you enjoy it? I adored the 1980s television version we watched in school growing up … and then when I was reviewing theatre I got to meet the actor who played Gilbert Blythe. What a fan girl moment for me!
I have to get cracking on my MCAS piece! It’s hard because I’ve basically written three threads in that “other place” that I want to combine into one article - but I’m having a hard time doing it without it seeming clunky. Perhaps a multi part feature on MCAS might make more sense?
Is your HAT result back yet?
I thought Anne was a lovely story. It was a nice break from all of the science and non-fiction I had been reading at the time.
The HAT test results take a month, so it’ll be another two weeks or so. I’ll for sure put the results in an upcoming post.
Gotta love the tests that take forever to come back… sending good vibes and patience your way!
I just assumed it was the kind of thing that had to “culture” in a Petri dish, perhaps. Or maybe be genetically sequenced 🤷🏼♀️
How did you get to meet Gilbert Blythe!! SO FanGirl moment
I reviewed a theatre show he was in! He did a lot of Canadian theatre after Anne.
Really? interesting - let us know what your immunologist says, Amy. take care
Will do! Probably in one of my September posts because it’s not likely my brain will know to take me back to these comments 🤦🏼♀️🙃
Little tip: underneath the comment click the share>Copy link and save the comment somewhere on your calendar ;-)
I'd never be able to reaccess things otherwise! I save lots of articles and comments like that ;-)
xo
Good hack!
Glad you’re here, sending you loads of spoons 🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄
Thank you!!! I’m glad to be here and extraordinarily grateful for the extra spoons.
I can't say enough how glad I am you're here and that I found your Substack. You put into words so many of the things I'm thinking and feeling perfectly. Substack was the first place where I found not just one person but multiple people who felt the same way I did about COVID and who didn't make me feel irrational for still being COVID safe like so many have. Finding that kind of understanding is immeasurable in its value so I thank you so much for being one of those people and for speaking up and sharing your story. You motivate me to keep doing the same 🫶 (Also, that Anne of Green Gables series was one of my absolute favorites! Still is)
Thank you so much Jackie - this made my heart happy! There’s no bigger compliment for a writer than knowing they’re putting into words what many people are feeling and can’t express.
If you liked the Anne series - see if you can find the 1980s miniseries - it’s soooo good! My mom had it on VHS and would always put it on when I was home sick.
I think that's the one I watched as a kid (I watched part of the Netflix one but never finished it). Pretty sure it was on public television of some sort. Your mom was so smart to put it on VHS. I bet the library might have it but definitely have to do some digging so I can watch it again 😊 I was a big fan of Avonlea too (this whole conversation just unlocked a whole bunch of core memories lol)
That was probably it! It was 2 hours for Anne of green gables and then another 2 hours for the sequel (which had her as a teacher in Halifax and more of my crush Gilbert Blythe). I met and interviewed him years ago as part of my work as a theatre critic - totally fan girled. I swear I was more weak kneed with him than with Hugh Jackman and Elton John. I’m an Anne girl!
Omg you got to meet Gilbert?! I had the biggest crush on him from that series too. That's so cool! If you also met Hugh Jackman and Elton than I am fan girling over your fangirling lol. I really respect that you took the path of being a journalist. I was originally a journalism major in college but the teacher of the program scared me so I switched to creative writing. I loved that but also wonder what would have happened if I'd stuck with journalism.
Why did they scare you? It definitely wasn’t easy (or lucrative). I had a day job the entire time - and was exhausted 24/7. But I also had some incredible experiences!
I did indeed interview Hugh and Sir Elton. Elton was hilarious because I got captured on the front page of our biggest newspaper right after doing the interview. I was the only woman there - in a little black dress and very high heels on a crowded red carpet surrounded by men and cameras. I stuck out like a sore thumb but I treasure that photo so much!
It's funny, I can account it to one moment...the professor said if we made one mistake in an article she would fail us. Which at the time, I was like "nope, that's terrifying and too much pressure", but now looking back as an adult, she was just trying to prepare us to work in the industry I think.
Love that story about the Elton photo too! Thanks for sharing.
I remember that! I tried to watch the clip but had to stop after a few seconds. Still miss Jonathan.
It’s still hard to believe he’s gone - I’m so happy we have that performance etched in our memories.
I was so privileged to have done 3 shows with him and have such happy memories.
It’s still one of my favourites too! I also loved the Netflix version. It remained very true to the original but I felt it enhanced it in a really wonderful way.
I was so grateful to that series for spreading the joy of Anne around the world!
Thank you for this thorough post and invitation to share. I am @singlemumspeaks. I live in the UK and am moving slowly from denial into acceptance of chronic health issues although I have been suffering undiagnosed for years. I have endo and a whole host of other stuff including chronic pain I think exacerbated by recent medical interventions. I have a feeling I may have MCAS but still very early days of exploring it all. I am finding solace, hope and inspiration in the writers like yourself talking so openly about chronic illness here on Substack x
Hi Chloe! Thank you for introducing yourself! I have endo as well - and it’s something I plan to write more about in the future.
As for MCAS - that one is a beast. I’ve been struggling for years and am sketching out a 3 part series about it to try and help people new to the MCAS world.
I know it’s hard to move through denial and into acceptance - but I really feel like things get easier when you get there. We fight our bodies so hard when in denial - they appreciate the break when we reach acceptance
Thank you. I know that you are right when it comes to acceptance/denial. I look forward to reading what you write on MCAS. It definitely does feel like a beast if that is what ai have x
The good news is that it can improve a lot with the right combo of meds and diet/lifestyle changes… it’s just unfortunate how hard it can be to go through the trial and error.
Okay that's great to know. By meds do you mean supplements or allopathic medication? So far the doctors I have spoken to seem to be unaware of MCAS but maybe I am just talking to the wrong people.
You may be talking to the wrong people. You really need a savvy doc who’s up on all the treatment options. There’s definitely natural treatments that can help (as well as OTC stuff you can try on your own) but a prescription mast cell stabilizer was the biggest game changer for me and I’m lucky to have a doctor willing to experiment as there are a LOT of med options and combinations.
Maybe I should dedicate one post just to that?
Ooh yes please that would be amazing! Thank you
Hi Hon - A beautiful article. Thank you for sharing more of your journey and experience.
Right there alongside you—Gumption, Grit, support, reminding you to rest, tag-teaming, AND the great show tunes and music! I might have to put Dear Evan Hansen (You Will Be Found) on later
I loved that version of Anne of Green Gables. The actress who played Marilla was so good.
I’m so glad you get the “gumption” reference! Apparently it’s not a common word anymore. Whenever I use it I think of Kate Winslet in “The Holiday” and how she found her gumption.
Awww I SO get the ref - meet cutes and ALL it's my fave scene in 'The Holiday', Oh and when he goes up the steps to the stage.
I loved Anne of green gables too! Watched it many times throughout my adulthood as well as childhood!
I love the word gumption it reminds me of Gwinneth Paltrow in the holiday when she slams the door in all her power in her ex boyfriend’s face!
Kate Winslet 😂😂. But yeah that’s a big part of why I use that word. I adored that film and I love Kate!
Oh yes! My memory of watching films is so sketchy I normally can’t remember a single thing that happened and can watch the whole thing again as if for the first time - but that one I just loved that moment!
That’s ok! The gumption line was the most important part!
Also I find the more symptomatic I am the more I gravitate towards films I’ve seen a million times. I find it less stressful when I know what’s going to happen and I don’t have to concentrate as hard
Glad you are embracing doing something you love and able to do it so actively. I appreciate your helpful tips and tricks and stories and look forward to more. Best wishes.
Thank you! I’m very grateful to have something I can do from bed… since my physical limitations keep me from doing a lot of things.
If you feel comfortable sharing what brought you here - I would love to know!
So glad to have discovered/found you!
My son was injured with a gunshot wound to the neck when he was 18. 30 years later, he is still determined to live independently. That's getting harder for him, but I am able to provide caregiving support on a regular basis because I retired from teaching (37 years as a Reading Specialist) in May. Your journey is unique. So was his. So is mine. Our stories need to be told. I, too, am a writer. My goal is to engage in it more fully with an eye toward publishing a book of essays.
I love your open nature and your welcoming spirit! Thank you!
Hi Mickey! Thank you! What a lovely message this was to receive. I'm always so happy when I hear that my story is resonating with people and that they value the unique perspectives we can all bring to the table.
I'm sorry to hear about your son - and I hope that some of my stories can help him as well. There's a lot of us within this community who aren't living as independently as we would like to be - but who are still trying to maintain our autonomy where we can. A lot of great caregivers too!
Autonomy leads to quality of life. At times, he expresses regret regarding how his condition has impacted mine. He doesn't realize how his heroic, courageous determination feeds forward my commitment to supporting him in that. As Kamala Harris says, "A true leader lifts up those around them." He and I do that for each other. We lift one another to become a better person. Every so often I start to sing the song, "On Eagle's Wings"
"And I will raise you up on eagle's wings!..." and we laugh so hard.
Thank you for replying to me. You have uplifted me with this delicious aspect of attention.
I am humbled.
I’m so glad I was able to lift you up - and that your son lifts you up! It’s so difficult when we’re reliant on others for basic survival and activities of daily living - it can become hard not to question if we’re negatively impacting their life.
You’ve lifted me up too by telling me how my writing helps you AND how your son inspires you! It helps with my guilt over needing so much help - hopefully my caregivers are also inspired.
Taking care of another is never a burden, rather an opportunity to stretch our hearts and expand our spirits. I look upon it as a gift.
Very glad I found you on the Stack! Writing here was a good way to transition out of being a cancer patient and back into the world and for the most part it's a great place to be. I didn't know you had moved to advocacy work and I am thrilled you are doing it. You're such a great writer and this work is so needed. I'm terrible at keeping up with my subscriptions but I will do my best to keep up with yours!
Aww so nice to see you MK! And thanks for the kind words. It was a big leap to do this - and while I share on twitter I haven’t posted it on fb because I’m still deciding what amount of anonymity I need to be comfortable with sharing these stories. I’ve been advised I should consider dropping the “Broadwaybabyto” in favour of my name of a pen name - but it breaks my heart a bit to let her go. Still - I have to be honest with myself that I’m unlikely to be back in the theatre anytime soon and people here might appreciate or prefer an actual name.
What do you think?
It's a tricky call. I can see the value of separating out the identities since they are such different things but they're all you. And who knows, maybe things dovetail back. Maybe what you're sharing now becomes a basis for a show farther down the line. Or maybe technology allows you the space to do reviews again, possibly of video content. Everything is shifting and changing and we don't know what will happen. Two years ago I didn't think I'd find myself back in the theatre world again and here I am.
So ultimately, get still and sit with it. See what comes up and feels true to you.
Yeah it really is tricky. I still feel like Broadwaybabyto … because you don’t have to go to the theatre to love the theatre! She will always be a part of me and I’m proud of her - so I’m not sure I want to change that!
Then you don't need to. It'll be easy enough to tie your name to the handle should you need to. And I do like the idea that it's your love for theatre that is defining your writing career, no matter the hard things you're writing about. More about you than your health challenges.
That’s exactly it! My love for the theatre is what gave me my empathy 100% - and my time writing about theatre made me a better writer. It’s a piece of my story. Though I do miss it dearly - why aren’t more theatres offering digital performances?
Funding. Most of them went into deficit, and funders have cut back (especially foundations) which doesn't leave them much room to expand on digital.
Really wonderful article that I simply ran across today. Thank you for your beautiful words!
Thank you for reading (and commenting!) Can I ask how you came across it? I love when I randomly stumble on articles that click with me.
In Notes
That's awesome - thank you for telling me! Notes is generally very quiet for me so I'm never sure if my posts are being seen... I'm glad they reached you!
Hi! Fellow writer, fellow chronic illness advocate. I relate to much of what you have said. Writing has helped me cope... if it helps even one person that is a bonus.
There is nothing easy about any of this... I do what I can when I can and that is enough...
Substack: View from the Trenches of Myalgic Encephalomyelitis.
Hello! Thank you for commenting - I know it takes precious spoons!
I’m glad writing helps you cope as well - it really is a wonderful too when we have the energy to access it… and I know many disabled patients have found great comfort in the writing and guidance of those who came before!
Help! How do I switch to paid? My phone asserts that I “can’t manage subscription in app”.
I’m not sure to be honest - you may have to do it via the web browser on your phone instead of in the app. My publication doesn’t have a paid option though 😊
Oh goodness yes yes yes — thank you!!!
Thanks for the intro and I love your style of writing! What resonated with me was your bit on why you write. I feel likeminded that "writing about my experiences keeps me grounded to the outside world. It allows me to take back some power when bad things happen to me. Makes me feel as though I’m taking my hardest moments and turning them into something positive." While I dont always see the positive, Ive found hope in calling it my adventure - complete with every feeling in between good and bad.
Cant wait to read what you write!
Hi Ellen - thank you for introducing yourself and for the lovely comment! I’m glad that part resonated with you. I think writing and art and song and all matters of creative endeavours can be so healing. They’re a unique way to touch other people as well - and challenge them to maybe think a bit differently about a certain issue or subject.
That’s my goal here - to challenge people to see disability and chronic illness in a more tolerant, accepting and loving light.
Great post! I didn't really start writing about disability issues for myself (and not my former employer) until 1) my parents were gone, and 2) my employer couldn't fire me for calling them out on their bullshit/hypocrisy/lying.
I am sorry you have lost friends, but they clearly really get you and your life experience anyway.
It can be so scary to write about when there could be potential blowback - I’m really glad you’re doing it now!
Go you my disabled ginger warrior friend !! I love this powerful post and I am SO GLAD you are here!!! Its writers with presence like yourself that I am in awe of, that I’m learning from and that are helping to lead the way. I e def seen in your posts where I connect to your warrior strength and bravery. I can see how activating some of what you share is for those on the planet who are not ready to receive it. I deeply admire your ability to take the stand and voice your truth anyway. It helps me a great deal because I’ve had so much fear over repercussion myself. I figured I should be compliant about some of the research I’ve done and what it’s uncovered. But when I was communicating with my dad in the spirit world the other month and asked him “what impact will my books have on the world dad?” He responded “catastrophic and cataclysmic” and that I’m here to “create new paradigms in the way we look at health, healthcare, diet, malfunction, our way of seeing, being and believing”. Uniting with warriors like yourself, ready and committed to shining a light and unearthing all that’s been laid dormant and suppressed for so long is really supporting me to stand in my own power. So I’ll be right with you every step of the way. Cheering you on, lifting you up when you are down. Because, together, I firmly believe we can bring about change. We can create shifts of some magnitude and our work will go on to leave a long lasting legacy.
Thank you for the kind words, encouragement and always cheering me on! I so appreciate it (and you!)
Thank you!!
Thank you for reading!