When I needed to accept using a wheelchair sometimes and was feeling paranoid about strangers casting disapproving looks whenever I stood up, a friend of mine designed a splashy t-shirt with "NO, I'M NOT FAKING IT" and a screaming possum across the front. It gave me loads of confidence and made me feel like a saint of snark.
(I'd share a photo but it looks like you can't do that in comments)
Bahahahaha that is epic. I totally know that sense of fear. For the first six weeks again, I won’t be stepping a toe on the ground, so no fear of judgement then. It’s the “ambulatory wheelchair user” life long term that more fills me with angst. It’s past time that people realized dynamic disabilities are just as real as being paralyzed.
I'm starting to feel a little better, but I have designated my job for the rest of time to YELL TO THE ROOFTOPS that ambulatory wheelchair users exist and to correct anyone who gives someone who can walk a hard time for parking in a disabled spot or who parks on the curb or who asks someone "what's wrong with them." Jesus help me lest I bite them.
JESUS HELP ME TOO. I have encountered this kind of nonsense and the advocate in has WORDS. Glad to know we will be holding our heads high, along with our hearts, from across the country together 🥰🫶🏼👏🏼
Oh I want one of those!! I have post concussion syndrome and issues with my eyes, when I've had to get around airports I used a wheel chair, but I look fit because I was swimming and could do some strength training, just can't walk very far without headaches. And SO MANY people would give me weird looks when I'd stand up out of my chair and walk into the bathroom.
THIS!! I use a wheelchair when I travel in the airport for the same reason. I’m doing a lot better with the paranoia about people judging me. I DO get bothered when the porters think I’m just chilling in the “waiting for assistance” seats and automatically go to someone with a visible disability without being courteous and seeing if I’m in line for a chair as well. I fight a lot of feelings when I get up at the gate and ask someone to “hold my chair” while I go to the bathroom so I don’t lose it for the assistance down the jetway. HOWEVER - big win - last month I convinced a friend of mine with young adult onset Parkinson’s to utilize the wheelchair assistance in the airport. She is very self conscious about her age and judgement from others but recently started needing a cane. I walked her through what to expect from check in to arrival, even down to having $ ready to tip. She did it! And it was a good experience and made her travel so much smoother. I was sooooo proud of her and thankful I could make a difference.
Caring for myself this week has looked like opting for a hotel when the campground flooded and there were no bathhouses and my van's dump hose broke (I travel for work in a converted van). It's a screw you to the "I'm not allowed" mentality that I've lived in for more than 40 years. Even though I feel the guilt in spades over choosing "easy" (thanks for that trauma and abuse), I'm choosing kindness and care instead of "figure it out and suck it up."
This 👏🏼👏🏼👏🏼. I think you are so right—surviving childhood trauma included gritting it through awful things. Learning we can choose a path through hard things with more *ease* is such a massive part of healing as adults.
Watching your dear face as you gave the royal wave was a beautiful ending....until I heard your dog whine. And THAT became THE best way to end this wonderfully written, hard and insightful and honest piece.
🥹 I almost cut the end of the video, cuz I didn’t want to end on a semi-sad note of my dogs being perplexed by this change. But? That’s reality. I might be over here making jokes and finding my laughs, but it’s also a lot to handle and get used to. So thank you, thank you for acknowledging that reality. 🙏🏼
Oh I'm so glad you left it. It was a very REAL moment and resonated my very own emotions. And it also gave me a tiny smile...the bitter-sweet sort...as I pictured the pet who wants to join in MAYBE and is asking for some explanation.
Yes! She’s perplexed but also intrigued. Ryan says no, but I plan on treat-training at least one of our dogs to go up and down this thing. At least have to try! For humor posterity’s sake! It has a remote control so this feels rather possible.
Mom mom died suddenly a few weeks ago. Self care for me this week looks like not skipping meals even if I only feel like I could eat a few bites. Usually once I start I can eat more than that. And it looks like continuing to let other people bring us meals even when part of me says I “should” start doing it all myself again.
😭 fully endorse the decision to let people help you longer than you feel comfortable with. And truly, WAY TO MAKE YOURSELF EAT. That is rather hard to do when grief has swallowed all your energy. Sending you love as you grieve the death of your mom. I don’t know her or you, but these gentle moves in your grief strike me as fabulous mothering. Hope that isn’t too soon to say. 🙏🏼
😭 well, wow. Thank you. I love how writing on Substack frees me to flow into more fun and unhinged ways of expressing myself. This essay started as a sad journal entry for my own soul after hating what was happening and feeling like I didn’t have anything to share on Substack this week. After I gave myself space to process, suddenly, I had things to say, but not enough pretense left to try to say it without letting it be weird. Thank God for weird.
Not weird. Realistic. Healthcare workers and chronic illness folks share the same propensity for gallows humor because how the heck else are we supposed to deal with it!! And while I am commenting...I dissolved into cackling giggles when I read about the "Aunt Bertha " search engine and you christening your new ride Bertha. My mother went by "Bert" or Bertie because she HATED her full given name. "Everything big is always named Big Bertha"! And she was always self conscious about her height--she was nearly 5'8" at 14 and was taller than her 8th grade classmates, boys included. (Kids these days seem taller to me ...) she would probably hate the fact that we lovingly call her old car which I now drive "The Bert Mobile." Lol
Yeah, I had to take a phone call with a case manager the day after I realized I had to get the damn stairlift; I was having coffee with my agent and repeated “Aunt Bertha” aloud after the case manager told me to search there. “Aunt Bertha?” My agent says. “Is that the name of the stairlift?!” It made me laugh too hard to not add this to my sick vocabulary.
My Hess cousins (Daddy's side) always called Mom Aunt Bertha and it drove her crazy. Except for the two who lives down the road that she got to call her Aunt Bert because they were around all the time growing up.
But it also is a strange comfort to me to see that name pop up! My mom fought against going into long term care until she wasn't able to make the decision herself due to her progressing condition. (Long hairy story in itself.) So the thought of a stairlift carrying her name is a poignant reminder that life sometimes just isn't fair and asking for help is hard. And you are waaaaaay too young to be dealing with that kind of crap already. Keep writing, and thank you for sharing your thoughts with us here on the interwebs...
YUUUUSSSSSS. I love that you talk out loud to your body during flares too. I find it to be rather important during some of the hard moments. Like, my body needs a friend and gentle parent, just as much as my body is also my friend, alerting me to her need for care.
Oh, KJ, you've done it again. How are we such soul twinsies??
For me, it looks like adjusting my schedule to sleep as much as this chronic fatigue body needs, especially when recovering from an illness, injury, or medical hell. It looks like buying the expensive sugar-free sweets that help me stay on my sugar-free lifestyle so I don't feel terrible. And it looks like turning down plans, and letting my husband take care of me when I've hit the evening and I have ZERO spoons or energy left.
I got a stair lift about 3 years ago. It's been such a blessing. I remember crying the first time that I rode on it. I sometimes still cry, but the stair lift makes it to my gratitude list regularly. That reminds me... my nightly gratitude list where I write about 10 things every night -- one of my favorite self care tools. Thank you. H
I feel so seen right now. Yes! I am hoping we can purchase this one—might raise funds for it. At the moment it’s a necessity, for total non-weight-bearing. But I can tell it would make my whole life so much less painful.
Love your gratitude practice. Focusing on the good that is here, along with the grief, is transformative.
Thanks for saying hello. Having a day full of grief and it’s a comfort to hear from someone who really gets it. 🙏🏼
I have chronic migraines and cluster headaches and photophobia. I also have chronic pain in lower back, right hip, and right knee. All of which I hate talking about because it feels like I’m drawing attention to myself. This year I resigned from the three volunteer jobs I’ve held for years. I’ve shifted gears in life. It feels strange. I’ve changed many of the light bulbs in my home to warm bulbs to help my eyes. I’ve ordered new prescription glasses that have special lenses to help my sensitive to light eyes. I have to take breaks from electronic devices. Sometimes I wear sunglasses inside a building. I have more doctor appointments than I used to have. I have good days and not so good days. All these things are just a change, a disruption, and have become my new normal. My biggest hangup is my own frame of mind. I need to give myself a break. I am trying to rest more. Be kind to myself. Relax.
Major practical self-compassion here!!! Know you aren’t alone in wishing you didn’t have to draw attention to yourself with those around you. It gets so old, eh? Applauding your small and large and substantial choices to love yourself as you are right now.
Caring for myself lately has meant filling up my pill container(s) every two weeks (two weeks worth) so that I actually take my medications so that I feel...somewhat normal. It's meant scheduling a bajillion doctor's appointments and taking "pain management" classes, even though I don't want to.
As someone who refills my pill container weekly, I applaud you. It does matter. Those small acts of care really do make a better reality for us. Ughh I’m sorry you also have to fill your time with so many more medical admin things than you ever imagined. 🙏🏼
When I needed to accept using a wheelchair sometimes and was feeling paranoid about strangers casting disapproving looks whenever I stood up, a friend of mine designed a splashy t-shirt with "NO, I'M NOT FAKING IT" and a screaming possum across the front. It gave me loads of confidence and made me feel like a saint of snark.
(I'd share a photo but it looks like you can't do that in comments)
Bahahahaha that is epic. I totally know that sense of fear. For the first six weeks again, I won’t be stepping a toe on the ground, so no fear of judgement then. It’s the “ambulatory wheelchair user” life long term that more fills me with angst. It’s past time that people realized dynamic disabilities are just as real as being paralyzed.
I'm starting to feel a little better, but I have designated my job for the rest of time to YELL TO THE ROOFTOPS that ambulatory wheelchair users exist and to correct anyone who gives someone who can walk a hard time for parking in a disabled spot or who parks on the curb or who asks someone "what's wrong with them." Jesus help me lest I bite them.
JESUS HELP ME TOO. I have encountered this kind of nonsense and the advocate in has WORDS. Glad to know we will be holding our heads high, along with our hearts, from across the country together 🥰🫶🏼👏🏼
YEAH we will. <3
Oh I want one of those!! I have post concussion syndrome and issues with my eyes, when I've had to get around airports I used a wheel chair, but I look fit because I was swimming and could do some strength training, just can't walk very far without headaches. And SO MANY people would give me weird looks when I'd stand up out of my chair and walk into the bathroom.
THIS!! I use a wheelchair when I travel in the airport for the same reason. I’m doing a lot better with the paranoia about people judging me. I DO get bothered when the porters think I’m just chilling in the “waiting for assistance” seats and automatically go to someone with a visible disability without being courteous and seeing if I’m in line for a chair as well. I fight a lot of feelings when I get up at the gate and ask someone to “hold my chair” while I go to the bathroom so I don’t lose it for the assistance down the jetway. HOWEVER - big win - last month I convinced a friend of mine with young adult onset Parkinson’s to utilize the wheelchair assistance in the airport. She is very self conscious about her age and judgement from others but recently started needing a cane. I walked her through what to expect from check in to arrival, even down to having $ ready to tip. She did it! And it was a good experience and made her travel so much smoother. I was sooooo proud of her and thankful I could make a difference.
That is so great. ❤
exactly.
Caring for myself this week has looked like opting for a hotel when the campground flooded and there were no bathhouses and my van's dump hose broke (I travel for work in a converted van). It's a screw you to the "I'm not allowed" mentality that I've lived in for more than 40 years. Even though I feel the guilt in spades over choosing "easy" (thanks for that trauma and abuse), I'm choosing kindness and care instead of "figure it out and suck it up."
This 👏🏼👏🏼👏🏼. I think you are so right—surviving childhood trauma included gritting it through awful things. Learning we can choose a path through hard things with more *ease* is such a massive part of healing as adults.
Watching your dear face as you gave the royal wave was a beautiful ending....until I heard your dog whine. And THAT became THE best way to end this wonderfully written, hard and insightful and honest piece.
🥹 I almost cut the end of the video, cuz I didn’t want to end on a semi-sad note of my dogs being perplexed by this change. But? That’s reality. I might be over here making jokes and finding my laughs, but it’s also a lot to handle and get used to. So thank you, thank you for acknowledging that reality. 🙏🏼
Oh I'm so glad you left it. It was a very REAL moment and resonated my very own emotions. And it also gave me a tiny smile...the bitter-sweet sort...as I pictured the pet who wants to join in MAYBE and is asking for some explanation.
Yes! She’s perplexed but also intrigued. Ryan says no, but I plan on treat-training at least one of our dogs to go up and down this thing. At least have to try! For humor posterity’s sake! It has a remote control so this feels rather possible.
That will be another story!!!
"Never underestimate the creative power of a woman in pain who values her wholeness." Gosh, this hit me. <3
And I'm very disappointed our name-it-and-claim-it shit didn't work on the Skele Gro. Damn prosperity gospel letting us down again.
Self care is ice cream right now. And I'm not sorry.
Oooof this is so true for you, my friend. Your creative power is larger than the laments in your life. Tell us—what is the best ice cream flavor???
It’s gotta be the Tonight Dough. Or else any version of pralines and cream
Mom mom died suddenly a few weeks ago. Self care for me this week looks like not skipping meals even if I only feel like I could eat a few bites. Usually once I start I can eat more than that. And it looks like continuing to let other people bring us meals even when part of me says I “should” start doing it all myself again.
😭 fully endorse the decision to let people help you longer than you feel comfortable with. And truly, WAY TO MAKE YOURSELF EAT. That is rather hard to do when grief has swallowed all your energy. Sending you love as you grieve the death of your mom. I don’t know her or you, but these gentle moves in your grief strike me as fabulous mothering. Hope that isn’t too soon to say. 🙏🏼
Girl my self-care is about to be watching that stair lift video every time I just want to peace out of something!
😂😂😂😂 I would love that honor
For me it means eating and watching TV when I can’t sleep, and taking my new Wellbutrin that makes doing the things just a little less hard
👏🏼👏🏼👏🏼 yes yes yes!! This is exactly what I meant by “practical”!
This is the most beautiful thing I have read on the internet this week. Your honesty and courage have touched a nerve in me I won’t soon forget.
😭 well, wow. Thank you. I love how writing on Substack frees me to flow into more fun and unhinged ways of expressing myself. This essay started as a sad journal entry for my own soul after hating what was happening and feeling like I didn’t have anything to share on Substack this week. After I gave myself space to process, suddenly, I had things to say, but not enough pretense left to try to say it without letting it be weird. Thank God for weird.
Not weird. Realistic. Healthcare workers and chronic illness folks share the same propensity for gallows humor because how the heck else are we supposed to deal with it!! And while I am commenting...I dissolved into cackling giggles when I read about the "Aunt Bertha " search engine and you christening your new ride Bertha. My mother went by "Bert" or Bertie because she HATED her full given name. "Everything big is always named Big Bertha"! And she was always self conscious about her height--she was nearly 5'8" at 14 and was taller than her 8th grade classmates, boys included. (Kids these days seem taller to me ...) she would probably hate the fact that we lovingly call her old car which I now drive "The Bert Mobile." Lol
The Bert Mobile 😂👏🏼
Yeah, I had to take a phone call with a case manager the day after I realized I had to get the damn stairlift; I was having coffee with my agent and repeated “Aunt Bertha” aloud after the case manager told me to search there. “Aunt Bertha?” My agent says. “Is that the name of the stairlift?!” It made me laugh too hard to not add this to my sick vocabulary.
My Hess cousins (Daddy's side) always called Mom Aunt Bertha and it drove her crazy. Except for the two who lives down the road that she got to call her Aunt Bert because they were around all the time growing up.
But it also is a strange comfort to me to see that name pop up! My mom fought against going into long term care until she wasn't able to make the decision herself due to her progressing condition. (Long hairy story in itself.) So the thought of a stairlift carrying her name is a poignant reminder that life sometimes just isn't fair and asking for help is hard. And you are waaaaaay too young to be dealing with that kind of crap already. Keep writing, and thank you for sharing your thoughts with us here on the interwebs...
😭😭 thank you for sharing all of this. I’ll give Aunt Bertha a ride today in your mom’s honor. 💃🏻
🥹 Aw! Thank you!
Right now, self care looks like talking to my body, with my out-loud voice, compassionately during an ulcerative colitis flare.
YUUUUSSSSSS. I love that you talk out loud to your body during flares too. I find it to be rather important during some of the hard moments. Like, my body needs a friend and gentle parent, just as much as my body is also my friend, alerting me to her need for care.
Thank you for your candid and vulnerable newsletter. Sending you so much love and prayers.
Thank you so much. 🥹
Oh, KJ, you've done it again. How are we such soul twinsies??
For me, it looks like adjusting my schedule to sleep as much as this chronic fatigue body needs, especially when recovering from an illness, injury, or medical hell. It looks like buying the expensive sugar-free sweets that help me stay on my sugar-free lifestyle so I don't feel terrible. And it looks like turning down plans, and letting my husband take care of me when I've hit the evening and I have ZERO spoons or energy left.
I got a stair lift about 3 years ago. It's been such a blessing. I remember crying the first time that I rode on it. I sometimes still cry, but the stair lift makes it to my gratitude list regularly. That reminds me... my nightly gratitude list where I write about 10 things every night -- one of my favorite self care tools. Thank you. H
I feel so seen right now. Yes! I am hoping we can purchase this one—might raise funds for it. At the moment it’s a necessity, for total non-weight-bearing. But I can tell it would make my whole life so much less painful.
Love your gratitude practice. Focusing on the good that is here, along with the grief, is transformative.
Thanks for saying hello. Having a day full of grief and it’s a comfort to hear from someone who really gets it. 🙏🏼
I have chronic migraines and cluster headaches and photophobia. I also have chronic pain in lower back, right hip, and right knee. All of which I hate talking about because it feels like I’m drawing attention to myself. This year I resigned from the three volunteer jobs I’ve held for years. I’ve shifted gears in life. It feels strange. I’ve changed many of the light bulbs in my home to warm bulbs to help my eyes. I’ve ordered new prescription glasses that have special lenses to help my sensitive to light eyes. I have to take breaks from electronic devices. Sometimes I wear sunglasses inside a building. I have more doctor appointments than I used to have. I have good days and not so good days. All these things are just a change, a disruption, and have become my new normal. My biggest hangup is my own frame of mind. I need to give myself a break. I am trying to rest more. Be kind to myself. Relax.
Major practical self-compassion here!!! Know you aren’t alone in wishing you didn’t have to draw attention to yourself with those around you. It gets so old, eh? Applauding your small and large and substantial choices to love yourself as you are right now.
Caring for myself lately has meant filling up my pill container(s) every two weeks (two weeks worth) so that I actually take my medications so that I feel...somewhat normal. It's meant scheduling a bajillion doctor's appointments and taking "pain management" classes, even though I don't want to.
As someone who refills my pill container weekly, I applaud you. It does matter. Those small acts of care really do make a better reality for us. Ughh I’m sorry you also have to fill your time with so many more medical admin things than you ever imagined. 🙏🏼
Self care this week is getting coached on my thoughts and connecting with an accountability partner.
Self-care as connection 👏🏼👏🏼👏🏼
Now I’m the one who’s so fuxking proud of you.
🥹🥹🥹