59 Comments

As always, breathtaking writing - no pun intended Ally. I am struggling to comprehend how fucked up America is in this moment, while simultaneously so grateful to live here in Australia, which while not perfect, is so very different to how you describe life in the US. Read Barbara Kingsolver’s “UnSheltered” a while back and realise just how prescient it was now. Ring that bell so fecking loud - and much love as you do. 💔💔

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Thank you so much, Cathy. I’m grateful to be making friends in other parts of the world, just in case 😉 And I love Barbara Kingsolver. The Poisonwood Bible was my first book of hers and that was it, she’s brilliant. Thank you for your kind comments, and for being here. Sending you lots of love ❤️

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You are always welcome to come visit and see how you like it here ❤️❤️❤️

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Thank you, Cathy!

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Great article, Ally. Feeling very grateful that I live in the UK and don’t have to worry about medical insurance. (Also glad I’ve never woken up in the middle of surgery. That must be terrifying.)

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I’m happy for anyone living in a country that provides universal healthcare. I understand no system is perfect, but what you have over there is heads and tails above this insanity. I really hope we get it together here. And yes, I’m also glad you haven’t had that experience, I really wouldn’t wish it on anyone. Sending you tons of love and hugs from Santa Monica, Wendy ❤️❤️

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This is outstanding.

❤️

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Thanks so much, Christopher, I’m glad you’re here 🤍

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I may have mentioned this before but there's something about your work that makes me think "I'm going to have to sleep on this before I comment". This piece kicked me so hard in the feels.

The talk of your mom....oof. My mother is also a nonparticipant in any medical situations, for herself or for others. She refuses to believe I have Parkinson's, she told everyone involved that I was "just tired" for the first two years. Now she doesn't bring it up much at all.

As far as the being awake during surgery, OH MY GOD. I cannot fathom the horror of that. If what doesn't kill you makes you stronger, you must be powerlifting minivans. I have dreams that involve me speaking but no sound comes out. The fact that you lived that and can write about it is a testament to your fortitude.

Of course they don't want to pay for anesthesia, it's always super expensive because the anesthesiologist has to pay beaucoup for malpractice insurance because their slip ups can be fatal. The fact that they want to skimp on covering something so vital is some heartless shit.

The murder of a CEO inspiring people to flood the airwaves with their insurance nightmares, thus opening the door to policy change (or closing the door on proposed gouging) means there is something positive to focus on while we wait for "a concept of a plan" to materialize (apply snark font to that last part)

I'm always in awe of how you seamlessly mesh your personal experience with big picture topics of discussion. Sending love ♥️

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Oh Eileen, I adore you so hard. Your mom sounds a bit like mine. And when I say a bit, I mean a lot 😂😩She would sort of “edit out”

the unpleasant, scary, messy, imperfect stuff and make sure the couch pillows were fluffed.

It is hard to comprehend how you don’t get a mammogram so that your daughter and granddaughter can have a complete family history, but what can you do I guess. She did get tested to see if she had the genetic marker for ALS, which she did not, so I’m grateful for that on both counts.

I’m so sorry you have Parkinson’s, Eileen. I know there aren’t any good words or right words or adequate words to express how sorry I am. I just hate that someone as insightful, wise, kind, creative, hilarious, caring and talented as you is dealing with something so shitty. And I wish I lived closer. We could have happy hour for introverts, or be the kind of friends who don’t get offended if you cancel at the last minute because you just don’t have it in you, or decide to head over to watch a movie and order in.

And thank you for your kind words about my writing. I hope you know it means the world to me. Love, hugs, solidarity and all the rest. Grateful for you ❤️

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Absolutely a perfectly pleasant fluffed pillow situation presented to the world. What you do not acknowledge cannot hurt you. OY.

Thank you for the words which are truly good, right, and adequate. It does pretty much suck but I choose to not allow the poop sandwich of PD to be my defining detail. I'm still a rebel above all!

And introvert/no penalty cancellation/movie with take out friends are the BEST. One of my bestest introvert super friends came to visit post COVID lockdown and one day it was particularly sunny outside. My housemates were all rallying to ride bikes and picnic and be part of the world and my introvert buddy said "Can we pull the drapes and wear caftans and binge Ted Lasso?" IT WAS HEAVEN I TELL YOU.

I love your writing and will always cheer you on. This site has rescued my sanity, no joke. Much love and appreciation from chilly Chicago. ❤️

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And thus, ⬆️ why I love you so much. You’re a bright light in a world that’s been feeling pretty dark lately and I appreciate you so much ✨✨✨

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“Kicked me so hard in the feels!” I just had to pop in here today, Eileen, this is one of the most do you like terms of phrase I’ve heard in a long time.

And I agree with you about both the minivans and the hope for change. ♥️

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My feels remind me that I am still alive!!! Refusing to give up hope. NOPE 👎

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Yasss!

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Good god. Thanks for writing this Ally. The system unsustainable. Late stage capitalism is gonna kill us all.

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Truly. I hope people start to see what they really ought to be fighting, and soon, too 🙏🏼

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Me too. Or we’re fucked.

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Surprised to see New Zealand’s health system ranked fourth in the world. We do have a free hospital system for all, but people can, and do, elect to go private.

Our current right wing government are pushing towards completing privatizing our health care system, so we can be just like our ally USA!!! No thanks!

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I was surprised, too. And the thing is, we could do something like that - universal healthcare with the option for private, or the ability to pay out-of-pocket for a specialist in cases where it doesn’t feel prudent to wait. But what we have now? Zero stars, do not recommend.

I do thank you for being here. 5 stars and two thumbs up for that. Lots of love 🤍

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My heart hurts reading this. For you, your Mom, my family and friends in the US. I am sad and sick about the lack of health care you must endure, and how the threat of bankruptcy is ever-present for so many Americans.

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Thank you for your compassion. It’s very comforting when people in other parts of the world care about what’s happening here. And thank you for your kindness. It was a rough go with my mom, and it still hurts to think about sometimes, but we also did a lot of healing together in those last weeks, and that’s what I try to focus on ❤️‍🩹 Sending you lots of love, thank you for being here xx

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Hi Ally, wonderful essay! I love how you describe things here and I am speechless how things seem to be going for us all.

Earlier this year when I had sore throat I sprayed some numbing spray into my throat, but something went wrong and I started to choke so bad I had to call 999 because it was painful to breathe and I literally thought I'm gonna choke to death.

It's obvious I lived lol, but even now I'm upset and angry they didn't really take it seriously (though my friend keeps telling me I wasn't choking if I could talk. I can't describe it how painful if was, I suppose it numbed my muscles there or something no idea), but thinking about it now, when they were only kind of interested if I'm bleeding, having a stroke or heart attack, but completely ignored the fact that I'm choking and struggling to breathe.)

I could be exaggerating I don't know, but there was the feeling of loneliness you mentioned too.

I'm only mentioning this as it's really awful to be denied help, whether medical or other, even if it exists only because you don't have enough money.

We advanced so much in technology yet we're no better to each other than thousand of years ago.

I don't know where do we go from here, but I am grateful for your words and company. At least we're not all alone in this.

Thank you and namaste 🙏

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I’m glad you were/are okay. It is so frustrating to have your medical concerns dismissed (let alone concerns, generally). What you described sounds scary. Any time you can’t breathe or feel like you can’t breathe it’s no joke. And not being taken seriously is alienating and depressing. Anyway I don’t know what’s going to happen here, but I know we need to start getting on the same team or we’re sunk. I guess we’ll see what happens. Hugs and love to you and Anneke, hoping for better days ahead 🤍🙏🏼

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I feel like I have to comment and I don't know what to say. I'm crying. I know how kind you are, Ally. I know it because I read your writing, and I've observed your presence here on Substack. And, there's and almost binaural beat of rage that permeates this peace. The drum beat of powerlessness. I don't know if it's your age or mine feeling, maybe both. But I'm sitting here forced to consider whether I'm truly powerless against the idea that loving kindness has been buried alive in America. This is beautiful and horrifying. Thank you.

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Thank you, Laury. I don’t think I’ve ever felt so gutted or powerless as I did when my mother was dying. I know that I advocated for her in every way possible, loudly and unrelentingly, even though I knew she was dying and there was nothing I could do to stop it. It’s a strange thing to be stripped down to the idea that all you can do is try to make sure someone you love dies with dignity and care, in as much comfort as possible. And to be dealing with all your own feelings of grief inside of a system that doesn’t care about your grief (and again, the nurses, doctors, the social worker at the hospital were amazing, it was the health insurance company, the crushing paperwork, the countless hours on hold trying to get a human being on the phone instead of an automated system, or trying to be connected the right department, or trying to determine whether certain procedures, equipment etc were covered) just adds insult to injury. I don’t think kindness is dead and buried here, I just think the only place to find it is in the people around us. The system has none. And the people around us, well…we have to be discerning but they’re there. I’m sorry to start your day with rage, but I hope it’s the good kind. And I’m sending you a huge side of love and hugs. Thanks so much for being here, Laury. I appreciate you ❤️

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You're so kind to answer so thoughtfully. My husband has stage 4 cancer, it's been over a year of treatment. His cancer is quiet right now. My daughters have a suffered an array of health issues, and at times they've been given up on by practitioners... not always. I have many personal feelings attached to all of this, but they're conflicted. I'm also immersed in gratitude. Thank you so much for your kindness. No reply necessary but they are always deeply appreciated.

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Oh Laury, I’m so sorry. I’m glad things are quiet right now for your husband, and I hope they stay quiet. I suspect you and I are similar in that it is so gutting to have someone you love suffer in a way that you can’t make better. And by “make better” I mean solve. Of course it makes it better to have someone in the fight with you, advocating for you. I do not know how people do it when they don’t have that. And I’m sorry about your daughters, too, and hope they are okay. It’s an amazing thing to find the people inside the system who do care and are there for all the right reasons. And so sad that the system itself is soulless and cruel. Sending you love and hugs.

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Well said, and thank you 🙏

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Your rage or mine

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Brilliant— every word. I love you.

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Thank you and I love YOU. A lot.

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Ally. thank you for sharing the terrifying experience. Beautiful writing. So many of us have shitty experiences with our healthcare system, and they need to be told.

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Thanks so much, Holly. I don’t think I know anyone without a story of some kind. Thanks for being here 🤍

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Thank you

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Thank you for being here 🤍

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Thank you for sharing this. I consistently wake up in every surgery I've ever had. Most recently, I warned my doctor it would happen right before she put me under for a hysterectomy when I was 31, and she laughed it off. The last thing I said before the world faded to black was "but really, keep an eye on that". I can't imagine what it's like to have those memories of being awake during surgery, because my brain has blacked those memories out and it's still traumatizing. After waking up the first time during the hysterectomy, I apparently tried to sit up and did somehow manage to speak to them. Scared the shit out of every person in that OR, and the anesthesiologist apparently had to give me almost four times the amount they thought they would have to, just to keep me under for the remainder of the surgery because I "kept stirring". Needless to say, that BCBS nonsense sent me spiraling when it was announced. And the whole insurance business has had me furious for almost a decade (I have what is considered one of the best--and probably most expensive--plans offered in my state, and they still won't cover most of the procedures or medications that my neurologist deems to be necessary). I so appreciate you channeling your anger and concern into something so beautiful and poignant. Thank you!

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Jess, thank you so much for sharing. This is just another example of how there really are no formulas when it comes to people. And I’m sorry because you weren’t heard, which is the most frustrating thing. I know that’s what I wanted, too, just some comfort and validation that I’d had a scary experience. You were asking to be taken seriously. Trusted to know yourself, asking them to please keep an eye on you. It’s not a lot to ask! The whole system is lacking in compassion. I really hope it changes. Sending you love and hugs. I’m really glad you’re here 🤍🤍

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This is the most powerful thing I’ve read in the wake of the CEO shooting. Thank you 🙏🏼

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Thank you so much, Carolyn 🤍

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I was awake for my first biopsy. Fun fact: fentanyl doesnt work on me, and whatever cocktail they gave me didn't put me to sleep, or even into "twilight sleep." I wasn't in pain, but I could feel the biopsy needle going in, and was well aware of everything they were doing. I also went to a pretty dark place thinking about the 2nd diagnosis--I've had one of those too.

That's just to say this was hard for me to read, and so, so infuriating. I really don't know what to do about this country, but thank you for writing this <3

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Oh Paul, I’m so sorry to hear that. I’ve had an ongoing issue with this through the years. I have dense breast tissue and tend to make these fibroadenomas, but you really can’t tell from the outside if they’re benign for sure, and with an (incomplete, thanks, Mom! 😂😩🤦🏻‍♀️) history of breast cancer on my mother’s side, they don’t mess around. I found one when I was breastfeeding my son, and another when I was breastfeeding my daughter. In both instances they wanted me to wean immediately so they could biopsy and I wouldn’t. So I had two “core” biopsies with nothing but topical anesthesia which doesn’t do shit lol. But at least I was mentally prepared, which is a lot different than waking up during an actual surgery, which is an experience I’d wish on no one. Well, except maybe the bastards who thought it was a good idea to place time limits on anesthesia, or who have no regard or empathy for people and just want to line their pockets. I’d be fine if they all woke up on the operating table.

Anyway, I’m sorry this was hard to read, I’m sorry you’ve had cancer diagnoses, and I won’t be able to find adequate words to say how grateful I am that you’re okay. As for our “healthcare” system and everything else going wrong in this country, I don’t know what to say, either. Except that I’m very thankful for the people who are on the same page, and though I’ve said it many times, I’ll say it again, here - I am moved, comforted, and relieved by your writing every week ❤️ You’re such a keeper.

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re: hard to read--these are the stories we must bear witness to, hard or no, and I am grateful to do that. Glad you're here, glad it's your voice telling the stories.

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okay this was incredible. touching and sad. and also the structure was so smooth and invisible and kept me reading right along. i know that takes so much work. thank you!!!

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Madeline, thank you so much. Truly ❤️

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