Writes Stephen P. Neary who animated the story, at the NYT.
That's a gift link, so please don't miss the beautifully drawn animation called "Living With a Visionary."
November 10, 2026
"After the death of his wife, Diana, the retired Notre Dame professor and poet John Matthias wrote a long letter to friends and family. "
"He detailed the uniquely devastating circumstances of his wife’s decline, as well as the events that led to his own disorienting commitment to a psychiatric ward. He was surprised to learn that a colleague had submitted the letter for consideration to a major national publication, which published it...."
Writes Stephen P. Neary who animated the story, at the NYT.
Writes Stephen P. Neary who animated the story, at the NYT.
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33 comments:
Darn it, why is there wetness on my keyboard? That was beautifully done...very moving in its simplicity and honesty.
My 84 year old husband was diagnosed with Parkinson's just before Covid hit. We have maintained much of our usual life although he tires more easily but, hey, he's 84. He has never had any hallucinations but, if they finally arrive as part of his progressive disease, we tease that we hope they include his most beloved dog who passed away some years ago. They had so much fun together and we cried almost literal buckets of tears when she reached her end. Thank you, Ann, for doin this post.
I finally signed up for a free NYT subscription so I could read these links.
It was worth it.
I do not know what to do with this, Ann. It was beautiful and awful and I'm sitting at my kitchen table and I am a non-cryer sobbing and I am hoping my son doesn't overhear and this is all I can bring myself to type.
A beautifully illustrated but very sad story. Diana, losing her happy illusions to frightening ones, her physical decline, so hard to see, but I’ve seen this in other dementia patients, devastating for their loved ones. I wish the daughter could’ve/would’ve had her father move to Ohio along with her mom, but who knows maybe her dad refused or Covid made things too difficult. I think the separation of Diana and her husband at the end was heartbreaking, I’m trying to not put judgment on the families decisions, I don’t know all the circumstances, I just don’t understand keeping them separated .
That was a lovely story. It reminded me of “Still Alice” (2014) with Julianne Moore.
Sad and lovely.
The illustrations are astonishing in their humanity. Truly beautiful.
There is a medication for the hallucinations caused by PD. It is under-utilized.
My dad had PD and near the end, he hallucinated quite a bit. One day while I was visiting, he thought the facility he was in was a beautiful hotel where he would be attending a medical meeting (he was a urologist). I played along, although I told him it was a meeting for pediatric medicine that got canceled. His response? "Those pediatricians are so unreliable."
Thank you, Prof. Althouse. Beyond the heartbreaking personal story, this account gently reminds us how important it is for our healthcare system to better support people living with dementia and the partners who care for them. Even the deepest love and dedication can’t always take the place of professional help and strong community resources.
For those interested, Matthias's original 2021 essay in The New Yorker, "Living with a Visionary", provides a fuller and particularly affecting account of their experience.
That was beautiful, and so sad. I like the way the artist drew by hand her whole understanding of this man's story, how he understood and loved his wife and never lost her till she died. In a way, not even then.
A very moving piece — the hand-drawn animation conveys Diana's changing world with such tenderness, and John Matthias's devotion through it all is heartbreaking to read about. Thank you for sharing it so sensitively. I found a useful tool for styling text like this at fancy text generator.
Thank you for posting this — the animation is beautifully drawn and deeply sad, and the letter behind it is worth reading in full. Is It Down
Noted: Side effects from drugs.
Chi Com fauci covid devastated the elderly.
Why Hallucinations Happen: They can be triggered by the natural progression of the disease (affecting brain networks and neurotransmitters like dopamine and serotonin) or as a side effect of certain Parkinson's medications, particularly dopamine agonists or higher doses of levodopa. Other factors like infections, sleep disruptions, or stress can also bring them on.
Google AI
The docs in the video admit the hallucinations are probably the drugs.
Parkinson's disease medications are necessary because the brain is no longer producing enough dopamine, a critical chemical messenger that coordinates body movement.
While current therapies cannot cure the disease or slow its underlying progression, they are vital for managing symptoms, preserving independent functioning, and restoring quality of life.
Google AI
Inag - f off. No need for your AI lectures.
“I’m trying to not put judgment on the families decisions, I don’t know all the circumstances, I just don’t understand keeping them separated.”
Medical facilities put all kind of restrictions on visitation. My friends couldn’t see their daughter for three months and finally said their good byes over a video monitor. That hospital only allowed one visitor and their granddaughter was the only one allowed to visit.
Another one of my friends - her grandmother was moved to a long term care facility that did not allow any visitors. Grandmother wanted to see her children and grandchildren. My friend finally found a place that would allow visitors - one at a time. Her grandmother died while she was being transported there. Covid was a boon to mini dictators everywhere.
Eva Marie, I just wish that John could’ve/would’ve moved to Ohio to the daughter’s home or the facility that Diana was in. He could’ve visited with her before she got Covid. But as I said, I don’t know all the circumstances.
That made me cry, too, but it also made me chuckle in the animation's subtle capture of the COVID insanity. The husband is sitting in the psychiatric hospital, masked, afraid he will catch COVID. Around him, everyone is wearing masks but they sneeze, scratch their butts, and rub their noses.
I started this morning by my computer, writing, and...having a very difficult time remembering some words that I know. Words I've always known. This is happening much more frequently to me and I'm never sure if it's just lack of sleep or something else coming to stay for a while.
Then I turned on this video.
Beautiful. Awful. Wonderful. Heartbreaking. And so real for so many.
My mom's last couple of years were a decent into dementia that started slowly, allowing us to get her on a waiting list for a decent assisted living facility, and pay for day and night care at her independent living facility until something opened up. Then covid hit and...on the last weekend before Michigan closed up, and her current housing facility closed up, and the outside help stopped coming, we managed to get her into a nursing facility. Not beautiful, we were told, but well run and safe. At least she would have the constant health care oversight that she needed at this point. And it was safe, until it wasn't and she was trapped inside with covid rampaging through the place. We could not see her in person that entire last year. I would fly up to Michigan often as I could to shout to her from outside her window. Then one day when I was down here in Florida I got a call that she had passed. Covid. Or dehydration from covid. There weren't enough people in the nursing home to watch everyone. I hate to think about how she spent her last days. But...
This is about the video And the video reminded me of those days. Parkinson's is so awful. The worst diseases are those that remove the person. They just disappear, a bit at a time.
Great video. Thanks for the post, Ann.
Covid harmed the elderly -the most.
by design.
michaele, sounds like your husband has a great partner.
My dad was diagnosed with Lewy body dementia and Parkinson’s a few years ago. There has been no cognitive decline and we're hoping the Lewy body part was a misdiagnosis, impacted in part by his wife's exaggeration of his symptoms.
I was not able to finish the animation because I'm a coward.
James Cromwell of Babe and Succession (and others) is the uncredited voiceover.
He said he was "surprised" to see it published. That tells me he did not give permission to publish it. If that happened to me, distributing or, worse, publishing something of mine without asking me, I would not only be surprised, I would be REALLY PISSED OFF.
I understand it was sent to a bunch of people and that sort of implies permission to show it to others.
It does NOT imply permission to broadcast it.
Shame on this so-called friend.
John Henry
I can't remember the author offhand and it may have been more than one. They had left explicit instructions to destroy all their non-published writings on their death. Their heirs went ahead and published them anyway.
I got on a big George Orwell kick in the 70s. Still on it though less passionately. Everyone does realize he wrote a number of books other than 1984 and Animal Farm, right? As well as massive amounts of journalism. All well worth reading obsessively over and over. (Esp "Coming Up for Air")
I remember being pretty excited when Bernard Crick wrote thick bio in the 70s. Until I got to the part where Crick talked about how Orwell had forbidden anyone to write a bio in his life or after. Crick said, essentially, screw him. Not going to respect his wishes.
May Crick burn in Hell.
It was a pretty good biography but should never have been written.
John Henry
I get so angry listening to stories of loved ones barred from seeing each other due to the lockdowns. Spouses, grandparents, children. What a monstrous crime committed upon the people of my beloved country.
John Henry said
All well worth reading obsessively over and over. (Esp "Coming Up for Air")
My favorite Orwell book. George Bowling clearly sees the inevitable disaster approaching (WWII), and longs for the simpler, quieter times of his youth. Now in my 60s and living in a time of great upheaval, I understand looking back at what was lost.
Orwell's most humane book.
Michael,
I think you are the first person I've met who has even heard of it. I've probably read it at least 50 times since I first discovered it in the 70s. I'm at the point now where I don't even have to read it. I just close my eyes and it plays in my head.
One of the 10 best things I've ever read. Conrad's Youth, Shute's Trustee from the Toolroom, and A Town Like Alice are a couple of others on that list that I read over and over.
When my son was in the 8th grade he had to read Animal Farm or perhaps 1984. He was amazed to find that Orwell had written anything else. He told the teacher and the teacher was unaware of it either.
Nevil Shute is another one book wonder. Everybody knows about his end of the world book On the Beach (and the movie of it that his daughters think killed him). A few may know of A Town Like Alice. Nobody knows about his other 24 books. All worth reading over and over. When I first learned of his other books I fell in love. When the internet came along, I founded the Nevil Shute Society. Still going strong at https://nevilshute.org/
Any fellow Norwegians here?
John Henry
"He said he was "surprised" to see it published. That tells me he did not give permission to publish it. If that happened to me, distributing or, worse, publishing something of mine without asking me, I would not only be surprised, I would be REALLY PISSED OFF. I understand it was sent to a bunch of people and that sort of implies permission to show it to others...."
I'm assuming that he was asked before it was published. Look how the sentence in the column was framed: "He was surprised to learn that a colleague had submitted the letter for consideration to a major national publication, which published it."
Step 1: The letter was submitted.
Step 2: ????
Step 3: The letter was published.
It never says he wasn't asked or that it was published without his consent. It's more exciting without detailing step 2, but I'm betting he was asked.
At the risk of buzzkill: Salinger v. Random House was decided in 1987. It changed nonfiction publishing. Two biographies I wrote were severely altered by the case law, which established the writer of letters as the copyright holder. Matthias owned rights to that letter. Astounding that the NYT published without the owner's consent or even knowledge.
John Henry: why did Orwell not want his biography written?
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