I would say that you haven't just become a writer, but an accomplished one. This is a powerful essay, thank you.
I don't know how to deal with my feelings about the nation/culture/world we live in when such a serious disease is being dismissed as 'mild'. Behind that facile dismissal are people who are now disabled or dead in its wake. I looked it up - for the five years of this pandemic, more people have died each week from acute SARS infections than die from tuberculosis in a year. Do doctors say TB is 'mild'? Or that if someone in your household has active TB you don't need to take precautions?
Your experiences with Long Covid and PEM bring home what Ed Yong has written: PEM is "the annihilation of possibility." Dianna Cowern's recent heath improvement has been wonderful to see. I hope the same is soon to happen for you, too.
Julia, I am new to the gauntlet and have been working my way through the backlog. I haven’t connected with writing the way I have to yours in a long time. I am so sorry that you have had such a difficult year. Solidarity 💙
Many thanks for sharing, Julia. I can't add to your brilliant piece except to say that we need your truth telling more than ever before. I wish you better, nay, the best of health, always. Please give Beatrice a pat from us all.
Beatrice sounds like a good cat. Well written as always. I wish I had something poetic or inspirational to share, but my words would seem pretty pedestrian after reading your thoughts. So, I’ll leave it as “merry Christmas / happy holidays” and a great big virtual hug.
You write so brilliantly. I am glad that Long Covid has not extinguished that spark. Your joy for small victories is contagious, and your anger at the ever-present injustices of an ableist society is shared by all of us.
Instead of Beatrice, I have Solo, an 8 year old whippet. Fortunately whippets are fast couch potatoes— especially as they get older. Yes they can run fast and love to Tun when they are off leash, but the rest of the time they are loungers, couch potatoes. Solo has no complaints that I spend a lot of my day in bed!
PEM is the worst. It was the first sign that me doctor recognized as being potentially Long Covid five weeks after my infection in February 2021. When I was allowed out in week three I went grocery shopping one day and took Solo for her usual walk down by the Fraser River the next day. I was due back at work two days after that but spiked a temperature. I was told not to go out till I was 48 hours fever free. I did the same thing the following week. Took my dog for her normal walk one day and went grocery shopping the next. The same thing happened. I couldn’t go back to work. My GP sent me for blood work the next week. The lab is 0.6k from my house. Not far. I thought I was going to die on my way home. It was a real struggle— and my physical tolerance just went down. For some time after that it was all I could do to get my dog to the end of the block and back. Going round the block took quite a bit longer.
Worksafe sent me for occupational and physical therapy. They wanted to send me back to work starting at 4 hours and building up to 8 hours four days a week over a period of six weeks. I had a major meltdown. I couldn’t get them to understand that at that point I hadn’t yet been out of the house for longer than five hours (doctors appointments) in 6 months and I needed several days to recover from that. Then began a two year nightmare trying to explain that their idea of pacing and mine were worlds apart.
Like you Julia, the people I communicate most with now are my Long Covid support group buddies. There are a few people I message with/email regularly, one daily. Otherwise my life is self contained. I can keep myself amused. I’m rarely bored. Audible books and podcasts are my life saver.
Most of what I learned about Long Covid in my first year was from Facebook groups. Everyone was sharing their experiences and symptoms. We learned from each other that as bizarre as any symptom seemed, others had experienced it too.
Now that I am not doing anything, I feel better. As long as my activities are limited, I’m ok. I can manage more time out than I used to— but it’s still limited. And the less far I gave to go the better.
Take care of yourself Julia and thank you for The Gauntlet. It’s a brilliant descriptor.
Brilliant piece, but I'm so sorry for what you're going through. It's appalling how little attention Covid gets now in the media. Almost like it never happened.
And the medical profession -- what is going on there?? Yesterday, a doctor told me Covid is gone -- "it came and now it's gone." Seriously. I don't think he liked that I was wearing a mask. I could not wait to get out of his office.
Anyway, big, gentle hugs to you and Beatrice. You will get better, maybe not tomorrow, but you will.
I’m grateful it was a ‘very very good day’ for you, Julia, and that you chose to write this revealing piece. Thank you, I know it took a toll on you, the brain bandwidth needed to accomplish and the price that was paid to articulate all that you wanted to share, so brilliantly. Please know we appreciate you sharing your story. It matters. So much. We grieve, our bodies and life in the before times. It all comes down to the little things and tiniest of details we cherish in our immediate surroundings of our safe havens. On the positive side it gives us an opportunity to dig deeper into who we are at our core and find ways to express our inner most creative self as we embrace the beauty of moments like catching the morning sun rays filtering through the bedroom window casting shadows and creating dancing rainbow sprites on the walls & ceiling radiating from the crystal prism on the window. It was always about the little things, wasn’t it? Those shiny lustrous pearls that were ever present but we were too busy to notice. Ohhhh the grieving of the before times and the bigger picture of the life we lived and will always miss. I’m glad you have Beatrice. Sending you love and healing energy. May magical moments embrace your beautiful simplicities this Christmas. ✨
I'm glad you have Beatrice, but I'm sorry you have to live like this. America is very unjust with how public health is handled. Your writing is excellent and has made a big difference in my understanding of COVID. In a just world, you'd be the one writing for the Washington Post, not sicko Leana Wen.
Amen. I have some idea of what you have been going through. I have fibro. It is not as severe as what you have, but I have had it all my life. I also spend most of my life in my apartment.
I'm so glad that you are here, writing the words that reflect so many of our lives. Well, I wish you didn't have to be here and that I didn't either. But since we are, I'm glad you're telling the painful truths of being abandoned by not just the left but by our friends and family and of the absolute misery that is long covid.
I also wanted to ask (rhetorically, I don't expect an answer!) if you've explored MCAS at all. I was at daily chronic migraine and got some relief from Qulipta, but didn't really see major progress until I figured out MCAS was part of the picture and we started treating it. (Also, if you haven't, CGRP-class meds have been WAY more effective than any other preventative for me. Not unrelated, they're the only preventative actually developed FOR migraine disease.)
Your long COVID story is important! You can participate in this study if you...
•currently have long COVID, or had long COVID in the past
•worked full-time before you got long COVID
•are age 18 or older, and have an email address
What is the purpose of this study?
This study looks at challenges that people with long COVID experience at work or, if no longer able to work, when they apply for disability benefits. The goal is to help develop better workplace, Social Security, and policy solutions to benefit people with long COVID.
What will I be asked to do?
You will be asked to participate in an interview. You may choose to answer the questions in writing at your own pace, or in a 60-minute conversation with the researcher via Zoom/phone, or in a 40-minute conversation with the researcher and some questions in writing.
Your participation is completely voluntary and confidential.
Who is leading this study, and who is funding it?
Deborah Lefkowitz, PhD, researcher at the University of California Riverside, is leading this study in collaboration with long COVID patient advocates and other stakeholder advisers.
The study is funded by a fellowship from the Retirement and Disability Research Center and Institute for Research on Poverty at the University of Wisconsin, and supported by the Social Security Administration.
If you would like to participate in this study
To start the questions and receive the Study Information Sheet
to learn more about the study, please use this link:
On a very, very good day when you could have chosen among all kinds of ways to spend the time and energy, you chose to write this post. Thank you for that act of great generosity. Best wishes to you and Nurse Beatrice for lots of small joys, relief from suffering and growth in community. The real kind.
I would say that you haven't just become a writer, but an accomplished one. This is a powerful essay, thank you.
I don't know how to deal with my feelings about the nation/culture/world we live in when such a serious disease is being dismissed as 'mild'. Behind that facile dismissal are people who are now disabled or dead in its wake. I looked it up - for the five years of this pandemic, more people have died each week from acute SARS infections than die from tuberculosis in a year. Do doctors say TB is 'mild'? Or that if someone in your household has active TB you don't need to take precautions?
We have lost our way.
Your experiences with Long Covid and PEM bring home what Ed Yong has written: PEM is "the annihilation of possibility." Dianna Cowern's recent heath improvement has been wonderful to see. I hope the same is soon to happen for you, too.
I couldn't be more proud of you than I am right now. Your tears are ours, too. Your hope is ours as well.
Thanks dad 🙏 🥺
Julia, I am new to the gauntlet and have been working my way through the backlog. I haven’t connected with writing the way I have to yours in a long time. I am so sorry that you have had such a difficult year. Solidarity 💙
This is so nice to hear 🥹. Thank you so much.
Many thanks for sharing, Julia. I can't add to your brilliant piece except to say that we need your truth telling more than ever before. I wish you better, nay, the best of health, always. Please give Beatrice a pat from us all.
Beatrice sounds like a good cat. Well written as always. I wish I had something poetic or inspirational to share, but my words would seem pretty pedestrian after reading your thoughts. So, I’ll leave it as “merry Christmas / happy holidays” and a great big virtual hug.
Beautiful, beautiful piece. I wish you better health in 2025.
You write so brilliantly. I am glad that Long Covid has not extinguished that spark. Your joy for small victories is contagious, and your anger at the ever-present injustices of an ableist society is shared by all of us.
Instead of Beatrice, I have Solo, an 8 year old whippet. Fortunately whippets are fast couch potatoes— especially as they get older. Yes they can run fast and love to Tun when they are off leash, but the rest of the time they are loungers, couch potatoes. Solo has no complaints that I spend a lot of my day in bed!
PEM is the worst. It was the first sign that me doctor recognized as being potentially Long Covid five weeks after my infection in February 2021. When I was allowed out in week three I went grocery shopping one day and took Solo for her usual walk down by the Fraser River the next day. I was due back at work two days after that but spiked a temperature. I was told not to go out till I was 48 hours fever free. I did the same thing the following week. Took my dog for her normal walk one day and went grocery shopping the next. The same thing happened. I couldn’t go back to work. My GP sent me for blood work the next week. The lab is 0.6k from my house. Not far. I thought I was going to die on my way home. It was a real struggle— and my physical tolerance just went down. For some time after that it was all I could do to get my dog to the end of the block and back. Going round the block took quite a bit longer.
Worksafe sent me for occupational and physical therapy. They wanted to send me back to work starting at 4 hours and building up to 8 hours four days a week over a period of six weeks. I had a major meltdown. I couldn’t get them to understand that at that point I hadn’t yet been out of the house for longer than five hours (doctors appointments) in 6 months and I needed several days to recover from that. Then began a two year nightmare trying to explain that their idea of pacing and mine were worlds apart.
Like you Julia, the people I communicate most with now are my Long Covid support group buddies. There are a few people I message with/email regularly, one daily. Otherwise my life is self contained. I can keep myself amused. I’m rarely bored. Audible books and podcasts are my life saver.
Most of what I learned about Long Covid in my first year was from Facebook groups. Everyone was sharing their experiences and symptoms. We learned from each other that as bizarre as any symptom seemed, others had experienced it too.
Now that I am not doing anything, I feel better. As long as my activities are limited, I’m ok. I can manage more time out than I used to— but it’s still limited. And the less far I gave to go the better.
Take care of yourself Julia and thank you for The Gauntlet. It’s a brilliant descriptor.
Brilliant piece, but I'm so sorry for what you're going through. It's appalling how little attention Covid gets now in the media. Almost like it never happened.
And the medical profession -- what is going on there?? Yesterday, a doctor told me Covid is gone -- "it came and now it's gone." Seriously. I don't think he liked that I was wearing a mask. I could not wait to get out of his office.
Anyway, big, gentle hugs to you and Beatrice. You will get better, maybe not tomorrow, but you will.
I’m grateful it was a ‘very very good day’ for you, Julia, and that you chose to write this revealing piece. Thank you, I know it took a toll on you, the brain bandwidth needed to accomplish and the price that was paid to articulate all that you wanted to share, so brilliantly. Please know we appreciate you sharing your story. It matters. So much. We grieve, our bodies and life in the before times. It all comes down to the little things and tiniest of details we cherish in our immediate surroundings of our safe havens. On the positive side it gives us an opportunity to dig deeper into who we are at our core and find ways to express our inner most creative self as we embrace the beauty of moments like catching the morning sun rays filtering through the bedroom window casting shadows and creating dancing rainbow sprites on the walls & ceiling radiating from the crystal prism on the window. It was always about the little things, wasn’t it? Those shiny lustrous pearls that were ever present but we were too busy to notice. Ohhhh the grieving of the before times and the bigger picture of the life we lived and will always miss. I’m glad you have Beatrice. Sending you love and healing energy. May magical moments embrace your beautiful simplicities this Christmas. ✨
I'm glad you have Beatrice, but I'm sorry you have to live like this. America is very unjust with how public health is handled. Your writing is excellent and has made a big difference in my understanding of COVID. In a just world, you'd be the one writing for the Washington Post, not sicko Leana Wen.
Amen. I have some idea of what you have been going through. I have fibro. It is not as severe as what you have, but I have had it all my life. I also spend most of my life in my apartment.
I'm so glad that you are here, writing the words that reflect so many of our lives. Well, I wish you didn't have to be here and that I didn't either. But since we are, I'm glad you're telling the painful truths of being abandoned by not just the left but by our friends and family and of the absolute misery that is long covid.
I also wanted to ask (rhetorically, I don't expect an answer!) if you've explored MCAS at all. I was at daily chronic migraine and got some relief from Qulipta, but didn't really see major progress until I figured out MCAS was part of the picture and we started treating it. (Also, if you haven't, CGRP-class meds have been WAY more effective than any other preventative for me. Not unrelated, they're the only preventative actually developed FOR migraine disease.)
Your long COVID story is important! You can participate in this study if you...
•currently have long COVID, or had long COVID in the past
•worked full-time before you got long COVID
•are age 18 or older, and have an email address
What is the purpose of this study?
This study looks at challenges that people with long COVID experience at work or, if no longer able to work, when they apply for disability benefits. The goal is to help develop better workplace, Social Security, and policy solutions to benefit people with long COVID.
What will I be asked to do?
You will be asked to participate in an interview. You may choose to answer the questions in writing at your own pace, or in a 60-minute conversation with the researcher via Zoom/phone, or in a 40-minute conversation with the researcher and some questions in writing.
Your participation is completely voluntary and confidential.
Who is leading this study, and who is funding it?
Deborah Lefkowitz, PhD, researcher at the University of California Riverside, is leading this study in collaboration with long COVID patient advocates and other stakeholder advisers.
The study is funded by a fellowship from the Retirement and Disability Research Center and Institute for Research on Poverty at the University of Wisconsin, and supported by the Social Security Administration.
If you would like to participate in this study
To start the questions and receive the Study Information Sheet
to learn more about the study, please use this link:
https://redcap.link/longcovid_disability
If you have any questions, please contact
Deborah Lefkowitz at deborahl@ucr.edu
Approved | Protocol #30495 | Approved: Aug 22, 2024
On a very, very good day when you could have chosen among all kinds of ways to spend the time and energy, you chose to write this post. Thank you for that act of great generosity. Best wishes to you and Nurse Beatrice for lots of small joys, relief from suffering and growth in community. The real kind.