As with so much of your prose, a sentence from your PHAN story sticks with me: "We need the opposite of what I see when I leave my home: a world in complete denial that this virus exists." No more perfect example of that denial (and perhaps outright rejection) is the confirmation of RFK Jr to head HHS. I much prefer your hopeful story to the news.
This is one of the best pieces you've written Julia. I too had to overcome the need for a wheelchair on occasion (back pain). I had to decide whether I wanted to rush through an experience, or whether I wanted to enjoy myself without pain. I decided to enjoy myself without pain and take the wheelchair. I support you in the decision to use the wheelchair, and I'm sorry that the world can be so shitty towards you at times. I'm glad someone at the clinic was supportive towards you.
Also a March 2020 OG! The age old debate... when to get the chair. It’s a tough one. In 2022/2023, I rented one for several months (The Feather - highly recommend!) and still wonder if I should just outright buy it. Until then, I carry my cane chair - a cane with a chair attached. And on very rare days I can manage the grocery store, I use their power chairs. If my upcoming stellate ganglion block doesn’t work, I’ll probably get the chair again. But the side eye from people who don’t understand ambulatory wheelchair users is very real. Thank you for this piece.
OG long hauler here (March 2020). A few years back, I bought a mobility chair on Amazon. It’s a wheelchair but without the ability to wheel oneself; you need someone to push you. Consider that if you can’t walk due to energy limitations/dysautonomia/POTS, you most certainly won’t have the spoons or the strength to wheel yourself. It’s basically upper body cardio.
The story of that extremely nasty receptionist (guard?) who questioned your need for a chair…there are no words. I used my mobility chair to go to my SSDI medical appointments (when they were still deciding if they’d approve me; after two denials and an admin hearing, they finally did). The older white male doctor who “examined” me (he spent a whopping total of 3.5 minutes with me) took one look at my chair and said, “aren’t you a little young to be in that thing?” I was stunned. It was clear before I’d even opened my mouth that he didn’t believe me. The irony is the admin judge who approved my benefits never laid eyes on me. The hearing was entirely by phone. But my 600+ pages of medical documentation and honest answers to his questions about my limitations were enough, thank goodness.
Phew! There's a lot to consider and contemplate packed into those paragraphs! Even though I'm not currently at a point in my life where I need a wheelchair, as a 73-year-old who has mild long covid, lives alone with two cats and a highly energetic puppy, no close family anywhere nearby, and few if any friends I can definitely count on, I strongly resonate with what you wrote! I'm really scared of being so disabled I can't get around on my own or care for myself. My situation is further complicated by being trans, and thus having an "unexpected" physical body. Solidarity to you, Julia, whatever decision you make. And thank you for writing such a thoughtful and heart-wrenching piece!
For a few years before covid, my sister and I would rent a mobility scooter at Disneyland. We took turns using it. It was the best place to store jackets, water, backpacks, and to rest. The scooter enabled us to stay all day at the park, as we have aged (I am 62).
I took my friend who has stage 4 lung cancer to Europe last year. We live in different cities and were meeting each other. I booked wheelchair service for her and for me. It saved the day. N the return, we both skipped the wheelchair service, and we we both regretted it. I pulled my carry on and backpack all through jfk, and last 50 gates. I damaged my damaged forearm muscle so badly, it has not gotten better in almost a year. (I, too, have long covid)
I think of we were in heart failure, or had stage 4 cancer, or diabetes, or a million other health conditions, we wouldn’t think twice about getting what we need to live our lives. But even the name long covid, implies that we did something wrong. That covid is going on too long.
No one is coming to save us, we have to save ourselves and help each other. So get a diagnosis that requires mobility supports and get what you need.
I worked with someone who was a paraplegic. He became a paraplegic due to a diving accident. He has a full life. 3 kids, a beautiful spouse, a great job that includes travel ( and a companion when he travels), he even won dad on wheels.
Our unluckieness (not a word) at becoming disabled due to long covid is no different than my friend with lung cancer or my friend who is a paraplegic. We deserve to live our lives, and mobility tools will help us to do so.
I fully understand your struggle, I went through the same thing when my M.E became moderate in 2011. I put off using a wheelchair, and then getting a mobility scooter. But doing so only harmed me. With each new mobility/disability device, my quality of life has improved. I'm still mostly housebound. I need carers to support me with basic tasks. But I can go out by myself every now and again, without forcing my body into another crash and decline. I say this with love, the moment you start wondering if you need a mobility device, you need one (abled people don't even consider it). I know it is scary, and there is the risk of being judged. But it is your life, and your body, which will pay the price of refusing to 'give in' (and it's not giving in/giving up, it's giving yourself a chance at freedom - in the same way someone uses a car because walking would not only be inconvenient, but could cause unnecessary pain, and use up a lot of your time). Someone may judge you, but they aren't the one who has to be in pain for days/weeks (and my experience has been that using a mobility aid more often makes me invisible, than a target). Ask yourself if you would tell a friend they don't need glasses, they just need to 'push through', or that if they are wearing them part time they are faking? The same should go for yourself, and you deserve to give yourself your best chance.
appreciate your insight and writing, as always. Thank you.
A few years ago I was temprorarily disabled by an injury that required surgery, and I used crutches and/or a wheelchair for a period of time. Eye-opening experience. The world is just so hostile to those with disabilities, from relatively smaller aggressions/encounters like your lady at the front desk, to massive structural barriers (e.g. is this building even wheelchair accessible??).
hope you’re doing ok and happy valentines day
ps great Jeremy Irons callout… he was awesome in HBO’s Watchmen series
Four years before you were born, we were introduced to Jeremy Irons as the star of the BBC production of Brideshead Revisited. I remember it as a wonderful series. Well worth watching if you can find it somewhere.
I "read" a lot of audiobooks while commuting the last couple of years when I was working, but I admit to being a retired Internet addict who reads constantly but very little long form. I fear all the reading of less than 2,000 word pieces has made it harder for me to sit and read a novel.
I know with older people who use a wheelchair but are sometimes ambulatory, it is a risk that the less you walk, the less able you become to do so because of muscle deterioration. So that worries me. But I know that LC/ME is the limiting factor.
As with so much of your prose, a sentence from your PHAN story sticks with me: "We need the opposite of what I see when I leave my home: a world in complete denial that this virus exists." No more perfect example of that denial (and perhaps outright rejection) is the confirmation of RFK Jr to head HHS. I much prefer your hopeful story to the news.
This is one of the best pieces you've written Julia. I too had to overcome the need for a wheelchair on occasion (back pain). I had to decide whether I wanted to rush through an experience, or whether I wanted to enjoy myself without pain. I decided to enjoy myself without pain and take the wheelchair. I support you in the decision to use the wheelchair, and I'm sorry that the world can be so shitty towards you at times. I'm glad someone at the clinic was supportive towards you.
Also a March 2020 OG! The age old debate... when to get the chair. It’s a tough one. In 2022/2023, I rented one for several months (The Feather - highly recommend!) and still wonder if I should just outright buy it. Until then, I carry my cane chair - a cane with a chair attached. And on very rare days I can manage the grocery store, I use their power chairs. If my upcoming stellate ganglion block doesn’t work, I’ll probably get the chair again. But the side eye from people who don’t understand ambulatory wheelchair users is very real. Thank you for this piece.
I've used the cane chair for times when I had to stand in a line for a long period of time. It can be a lifesaver!
OG long hauler here (March 2020). A few years back, I bought a mobility chair on Amazon. It’s a wheelchair but without the ability to wheel oneself; you need someone to push you. Consider that if you can’t walk due to energy limitations/dysautonomia/POTS, you most certainly won’t have the spoons or the strength to wheel yourself. It’s basically upper body cardio.
The story of that extremely nasty receptionist (guard?) who questioned your need for a chair…there are no words. I used my mobility chair to go to my SSDI medical appointments (when they were still deciding if they’d approve me; after two denials and an admin hearing, they finally did). The older white male doctor who “examined” me (he spent a whopping total of 3.5 minutes with me) took one look at my chair and said, “aren’t you a little young to be in that thing?” I was stunned. It was clear before I’d even opened my mouth that he didn’t believe me. The irony is the admin judge who approved my benefits never laid eyes on me. The hearing was entirely by phone. But my 600+ pages of medical documentation and honest answers to his questions about my limitations were enough, thank goodness.
Phew! There's a lot to consider and contemplate packed into those paragraphs! Even though I'm not currently at a point in my life where I need a wheelchair, as a 73-year-old who has mild long covid, lives alone with two cats and a highly energetic puppy, no close family anywhere nearby, and few if any friends I can definitely count on, I strongly resonate with what you wrote! I'm really scared of being so disabled I can't get around on my own or care for myself. My situation is further complicated by being trans, and thus having an "unexpected" physical body. Solidarity to you, Julia, whatever decision you make. And thank you for writing such a thoughtful and heart-wrenching piece!
Big Hugs Julia.
For a few years before covid, my sister and I would rent a mobility scooter at Disneyland. We took turns using it. It was the best place to store jackets, water, backpacks, and to rest. The scooter enabled us to stay all day at the park, as we have aged (I am 62).
I took my friend who has stage 4 lung cancer to Europe last year. We live in different cities and were meeting each other. I booked wheelchair service for her and for me. It saved the day. N the return, we both skipped the wheelchair service, and we we both regretted it. I pulled my carry on and backpack all through jfk, and last 50 gates. I damaged my damaged forearm muscle so badly, it has not gotten better in almost a year. (I, too, have long covid)
I think of we were in heart failure, or had stage 4 cancer, or diabetes, or a million other health conditions, we wouldn’t think twice about getting what we need to live our lives. But even the name long covid, implies that we did something wrong. That covid is going on too long.
No one is coming to save us, we have to save ourselves and help each other. So get a diagnosis that requires mobility supports and get what you need.
I worked with someone who was a paraplegic. He became a paraplegic due to a diving accident. He has a full life. 3 kids, a beautiful spouse, a great job that includes travel ( and a companion when he travels), he even won dad on wheels.
Our unluckieness (not a word) at becoming disabled due to long covid is no different than my friend with lung cancer or my friend who is a paraplegic. We deserve to live our lives, and mobility tools will help us to do so.
I fully understand your struggle, I went through the same thing when my M.E became moderate in 2011. I put off using a wheelchair, and then getting a mobility scooter. But doing so only harmed me. With each new mobility/disability device, my quality of life has improved. I'm still mostly housebound. I need carers to support me with basic tasks. But I can go out by myself every now and again, without forcing my body into another crash and decline. I say this with love, the moment you start wondering if you need a mobility device, you need one (abled people don't even consider it). I know it is scary, and there is the risk of being judged. But it is your life, and your body, which will pay the price of refusing to 'give in' (and it's not giving in/giving up, it's giving yourself a chance at freedom - in the same way someone uses a car because walking would not only be inconvenient, but could cause unnecessary pain, and use up a lot of your time). Someone may judge you, but they aren't the one who has to be in pain for days/weeks (and my experience has been that using a mobility aid more often makes me invisible, than a target). Ask yourself if you would tell a friend they don't need glasses, they just need to 'push through', or that if they are wearing them part time they are faking? The same should go for yourself, and you deserve to give yourself your best chance.
Jeremy Irons was also in the very excellent adaptation. You can find it on Amazon. Highly highly recommend.
I thought Pale Rider was SO GOOD- i loaned out my copy, I need to buy another. the audiobook was also excellent ( I did both)
appreciate your insight and writing, as always. Thank you.
A few years ago I was temprorarily disabled by an injury that required surgery, and I used crutches and/or a wheelchair for a period of time. Eye-opening experience. The world is just so hostile to those with disabilities, from relatively smaller aggressions/encounters like your lady at the front desk, to massive structural barriers (e.g. is this building even wheelchair accessible??).
hope you’re doing ok and happy valentines day
ps great Jeremy Irons callout… he was awesome in HBO’s Watchmen series
Four years before you were born, we were introduced to Jeremy Irons as the star of the BBC production of Brideshead Revisited. I remember it as a wonderful series. Well worth watching if you can find it somewhere.
I "read" a lot of audiobooks while commuting the last couple of years when I was working, but I admit to being a retired Internet addict who reads constantly but very little long form. I fear all the reading of less than 2,000 word pieces has made it harder for me to sit and read a novel.
I know with older people who use a wheelchair but are sometimes ambulatory, it is a risk that the less you walk, the less able you become to do so because of muscle deterioration. So that worries me. But I know that LC/ME is the limiting factor.