I accidentally deleted my tumblr account in a fit of pregnancy brain :(
I'm trying to add back everyone I was following but I can barely remember to eat lunch so I'm having trouble with the user names ... sigh.
AnasAbdin
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One Nice Bug Per Day
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izzy's playlists!
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@lemur--catta
I accidentally deleted my tumblr account in a fit of pregnancy brain :(
I'm trying to add back everyone I was following but I can barely remember to eat lunch so I'm having trouble with the user names ... sigh.
I have been thinking a lot about what a cancer diagnosis used to mean. How in the ‘80s and ‘90s, when someone was diagnosed, my parents would gently prepare me for their death. That chemo and radiation and surgery just bought time, and over the age of fifty people would sometimes just. Skip it. For cost reasons, and for quality of life reasons. My grandmother was diagnosed in her early seventies and went directly into hospice for just under a year — palliative care only. And often, after diagnosis people and their families would go away — they’d cash out retirement or sell the house and go live on a beach for six months. Or they’d pay a charlatan all their savings to buy hope. People would get diagnosed, get very sick, leave, and then we’d hear that they died.
And then, at some point, the people who left started coming back.
It was the children first. The March of Dimes and Saint Jude set up programs and my town would do spaghetti fundraisers and raffles and meal trains to support the family and send the child and one parent to a hospital in the city — and the children came home. Their hair grew back. They went back to school. We were all trained to think of them as the angelic lost and they were turning into asshole teens right in front of our eyes. What a miracle, what a gift, how lucky we are that the odds for several children are in our favor!
Adults started leaving for a specific program to treat their specific cancer at a specific hospital or a specific research group. They’d stay in that city for 6-12 months and then they’d come home. We fully expected that they were still dying — or they’d gotten one of the good cancers. What a gift this year is for them, we’d think. How lucky they are to be strong enough to ski and swim and run. And then they didn’t stop — two decades later they haven’t stopped. Not all of them, but most of them.
We bought those extra hours and months and years. We paid for time with our taxes. Scientists found ways for treatment to be less terrible, less poisonous, and a thousand times more effective.
And now, when a friend was diagnosed, the five year survival odds were 95%. My friend is alive, nearly five years later. Those kids who miraculously survived are alive. The adults who beat the odds are still alive. I grew up in a place small enough that you can see the losses. And now, the hospital in my tiny hometown can effectively treat many cancers. Most people don’t have to go away for treatment. They said we could never cure cancer, as it were, but we can cure a lot of cancers. We can diagnose a lot of cancers early enough to treat them with minor interventions. We can prevent a lot of cancers.
We could keep doing that. We could continue to fund research into other heartbreaks — into Long Covid and MCAS and psych meds with fewer side effects and dementia treatments. We could buy months and years, alleviate the suffering of our neighbors. That is what funding health research buys: time and ease.
Anyway, I’m preaching to the choir here. But it is a quiet miracle what’s happened in my lifetime.
Cystic fibrosis used to be a "disease of childhood" because people who had it rarely lived to be adults. Now it's considered a chronic illness.
I know I'm saying this as someone who's career largely depends on this, but: please, this is why we need basic science research. If you ever see a headline or snippet about something "ridiculous" that scientists are doing, you are being propagandized. You are being lied to. And it's in a way that aims to stop this progress.
There is a cure for sickle-cell anemia. Not a treatment, a cure. One of the first to be cured on a non-experimental basis--after decades of excruciatingly painful episodes, hospitalizations, after a disabling illness their entire life--recounted asking their doctor after the (lengthy) treatment, "What's next?"
And their doctor said, "There is no next. You're done. It's gone.". No follow up treatment, no drug regiment, just...life.
A really REALLY cool project to check out is everycure.org
It was started by David Fajgenbaum, who developed an extremely rare inflammatory disease during medical school. All of the available treatments for the disease did not work in his specific condition, and every time he had a flare, doctors told him and his family to prepare for him to die because there was nothing left to do. Over the course of several disease flares that nearly killed him, he dentified what was driving his specific condition and repurposed a therapy that was already FDA-approved to save his own life. He has not had a flare since.
Now he and his organization work with other patients who have extremely rare, "untreatable" diseases to identify FDA-approved drugs that will help them. They have saved 1000s of lives.
I have been rewatching Girls at 40 after watching it during its original run in my 20s. (I do this with a lot of shows and the self-reveals are bananas, it's emotional time-traveling, so I highly recommend it.)
In my 20s: I rooted for most of the main characters most of the time. I was on very board with some relationships, very opposed to others. Generally, my way of interacting with media then was less complex-- if they told me a story, I was following the story. Specific to Girls, I was less mature and really did identify with them, and their actions (however stupid) often made sense to me, at least on some level. I took sides when they had arguments. A lot of the design of the series was invisible to me.
At 40: These girls are anti-heroes. They are intentionally designed to be challenging to like and maybe the point is that they all suck and deserve each other. They make bad choices, partially because people that age genuinely make bad choices, but partially to expose flaws in their character and create plots that expose even further character flaws. When the characters argue, it is clear to me that everyone is making mistakes and it's irrelevant who is "right."
I am watching the arc where Hannah is in grad school right now and it's soooooo painful because it's like, I remember being as naive and narrowminded and overconfident as Hannah, both in real life and in the context of when I was originally watching this show and not able to see what it was really about. Aging is crazy! How smart will I be in another 15 years?
I JUST GOT OFFICIALLY DIAGNOSED WITH ADHD!!! POUR ONE OUT FOR ANNOYING GIRLIES EVERYWHERE
“What is the nature of the search? you ask. The search is what anyone would undertake if he were not sunk in the everydayness of his own life. To become aware of the search is to be onto something. Not to be onto something is to be in despair.”― Walker Percy, The Moviegoer
Just recording for posterity that my toddler refers to hiccups as “dreams in my mouth”
Thank god for therapy because now I know that when I'm full of rage and fantasizing that a meteor or plague will kill all humans on earth but spare every other form of life, I understand it's just because I'm sad that my mom neglected me.
image: lazily-drawn gold star saying "I DIDNT SURVIVE IT ACTUALLY I DIED LIKE FOR REAL BUT IM BACK NOW SO ITS FINE". end ID.
Last night my kids staged a bedtime revolt. From 9:10-9:15 they screeched "IT'S WAKE UP TIME MOMMY" and cackled like baby demons, and at 9:20 the 5 year old started chanting "THERE'S ANTS IN MY PANTS" and the 3 year old had to add his own flavor to it so he started a response call: "THERE'S NUTS IN MY BUTTS"
We met with a child psychologist today because my son won't speak to any adults except us and now it's time to get him some of that good support we never had. she was like, "well, a lot of what you are calling anxious behavior could also be a sign of autism" and suddenly we were like "we thought he had anxiety because we have anxiety, and he's just like us.... but if he has autism, then we probably have autism"
I do want to say that it is a privilege to be one of the very few people my beautiful, funny, smart son trusts enough to be his wacky self around. I am grateful to be one of his people and I hope to be one of his people forever. But I hope one day his world can be as big as he wants it to be.
"But," I told my husband, tears springing to my eyes. "If I don't pierce my septum before kindergarten starts, how will the other weird parents know we should be friends?"
missing lila and her blonde bob rn
i’ll never get over it, this hairstyle was my all time fave omg
How’s life going?
the real "Cleanse" is rewatching season 1 of the umbrella academy as soon as you finish season 4
Rewatching TUA season 4 and can confirm that Lila and five is the worst thing about it. Gross. Let’s get these two characters together by changing everything about their established personalities, good idea Steve. Second worst thing is uh the entire concept for this season and its ending. Literally anything would have been a better idea. Third worst thing is any scene with Viktor, sorry Eliot but wtf was that. Things I like:
- Luther and Diego
- klaus and Claire
- Allison’s coat
- Lila as a mom for the one second we get to see it
- beautiful clever Robert Sheehan, I would watch you do anything anytime anywhere
Rewatch complete. Bad decision. I cried for an hour and now I'm collapsing with depression. Why do I let me make choices.