On Being Tumblr

On Being Tumblr

On Being with Krista Tippett is a public radio project delving into the human side of news stories + issues. Curated + edited by senior editor Trent Gilliss.

We publish guest contributions. We edit long; we scrapbook. We do big ideas + deep meaning. We answer questions.

We've even won a couple of Webbys + a Peabody Award.
I sat beside her bed and saw a stranger and realized I had fallen asleep. While I was asleep, something had happened. The woman I knew who cooked three meals a day, who sewed all my clothes as a young girl and then taught me to sew, who polished hardwood floors on her hands and knees, who served as sacristan at our church — ironing fair linen and polishing chalices — who still put clothes out to dry on a clothesline and ironed sheets, who preserved vegetables from the garden — that woman was gone. In her place was another who had vacant eyes and hands that fell uselessly by her side and were empty of all occupation and all strength and all purpose. The woman I knew as my mother was gone.
- Gloria Jean Bubba, from this meditation on the grief and the loss that comes slowly from losing her mother to Alzheimer’s disease.
Comments
"Last Visit"
by Trent Gilliss, senior editor
The photo above was taken and submitted by John Pusey with only the words you see above: “last visit.” The two men seen so relaxed and familiar with one another and I wanted to know more. In reply, John wrote:

"This is a photo of my father and my son shortly before my father passed away. Even with Alzheimer’s, he retained his love of music until his death at 83. He was the first in the family to realize that my son is a truly talented musician."

Once an academic and youth development advisor, John is now retired and lives in Bonny Doon, California. In honor of his father’s love of music, he currently does volunteer work for a non-profit organization that provides era-appropriate music to seniors living in convalescent hospitals.
"Last Visit"
by Trent Gilliss, senior editor
The photo above was taken and submitted by John Pusey with only the words you see above: “last visit.” The two men seen so relaxed and familiar with one another and I wanted to know more. In reply, John wrote:

"This is a photo of my father and my son shortly before my father passed away. Even with Alzheimer’s, he retained his love of music until his death at 83. He was the first in the family to realize that my son is a truly talented musician."

Once an academic and youth development advisor, John is now retired and lives in Bonny Doon, California. In honor of his father’s love of music, he currently does volunteer work for a non-profit organization that provides era-appropriate music to seniors living in convalescent hospitals.

"Last Visit"

by Trent Gilliss, senior editor

The photo above was taken and submitted by John Pusey with only the words you see above: “last visit.” The two men seen so relaxed and familiar with one another and I wanted to know more. In reply, John wrote:

"This is a photo of my father and my son shortly before my father passed away. Even with Alzheimer’s, he retained his love of music until his death at 83. He was the first in the family to realize that my son is a truly talented musician."

John PuseyOnce an academic and youth development advisor, John is now retired and lives in Bonny Doon, California. In honor of his father’s love of music, he currently does volunteer work for a non-profit organization that provides era-appropriate music to seniors living in convalescent hospitals.

Comments

Wisdom on Alzheimer’s Disease Gained from Nuns

by Susan Leem, associate producer

Dr. Karen Santa Cruz of the University of Minnesota examines one of the 670 brains in the Nun’s Study, looking for signs of dementia. The brain pictured here is more than 75 years old and still looks healthy says Dr. Santa Cruz. (photo: Lorna Benson/MPR News)

The nuns of the School Sisters of Notre Dame made headlines in Time magazine a decade ago for making an unexpectedly profound contribution to how we understand Alzheimer’s disease.

Looking for a research project, David Snowdon became interested in the convent after a graduate student, a former nun, told the young epidemiologist about a retired community of nuns living out their days in Mankato, Minnesota. These women turned out to be ideal for research into aging because of their similarities in lifestyle. Snowdon didn’t know exactly what he was going to find among these nuns, but struck gold when finding their personal records in an old olive green file cabinet. The biographical essays they wrote as young women in their early 20s held clues to the way they aged over 50 years later.

What Snowdon found was a correlation between low grammatical complexity in their writing and low "idea density" among sisters who had Alzheimer’s disease. An example of a low-scoring sample:

"My father, Mr. L.M. Hallacher, was born in the city of Ross, County Cork, Ireland, and is now a sheet-metal worker in Eau Claire."

On the other hand, a high-scoring essay looks more complex:

"My father is an all-around man of trades, but his principal occupation is carpentry, which trade he had already begun before his marriage with my mother."

These high-scoring writers avoided dementia in their later years and performed better on other cognitive tests. Later, Dr. Snowdon pursuaded the nuns to donate their brains to science. Among the participating nuns who died, none of the high-density ideas nuns’ brains showed evidence of Alzheimer’s disease, while it was physically present in all of those with low idea density.

Researchers at the University of Minnesota now carry this research forward, trying to figure out why some of the nuns’ brains look diseased post-mortem, but before death, these women managed to live out their final days without dementia.

Another researcher in Canada has recently discovered that bilingual speakers can also stave off Alzheimer’s by a few years more than monolingual speakers.

Could there be a protective quality to maintaining your linguistic skills? Or is it that these nuns have always had a bit extra reserve of cognitive ability to weather the ravages of aging? Thankfully, this research provides more insights into questions like these as this massive longitudinal study involving over 600 nuns continues.

Comments

"My Life, My Death, My Choice"

by Andy Dayton, associate web producer

In December 2007, British fantasy writer Sir Terry Pratchett publicly announced that he had been diagnosed with Alzheimer’s disease. Primarily known for his best-selling Discworld series of fantasy novels, he has now become a vocal advocate for the right to “early death.”

The video above is from Pratchett’s speech, "Shaking Hands with Death," for the BBC’s annual Richard Dimbleby Lecture. Early on in the speech — delivered by actor Tony Robinson due to Pratchett’s condition — he tells the story of his father’s death from pancreatic cancer:

"On the day he was diagnosed my ­father told me, ‘If you ever see me in a hospital bed, full of tubes and pipes and no good to anybody, tell them to switch me off.’ In fact, it took something under a fortnight in the hospice for him to die as a kind of collateral damage in the war between his cancer and the morphine. And in that time he stopped being him and started becoming a corpse, albeit one that moved ever so slightly from time to time."

In the clip above, Pratchett addresses what he calls “the God argument” and identifies himself as a humanist who “would rather believe that we were a rising ape, not a falling angel.” He finishes with this thought:

"It’s that much-heralded thing called the quality of life that’s important. How you live your life, what you get out of it, what you put into it, and what you leave behind after it. We should aim for a good and rich life well-lived. And at the end of it, in the comfort of our own home, in the company of those who love us, have a death worth dying for."

Comments

How I Am Preparing to Get Alzheimer’s Disease

by Alanna Shaikh, guest contributor

Alann, Cris, and Mr. Shaikh

My father has Alzheimer’s disease. I am losing him in inches and pieces. It hurts. He is my hero and my mentor, and now I help him remember how to put on his clothes every morning.

My father has Alzheimer’s disease. There is a powerful genetic com­ponent to the disease, and I share a lot of my father’s risk factors, including bad triglycerides, a viral infection, and elevated cholesterol unaffected by diet. The odds are frighteningly high that I will someday get Alzheimer’s too. In 25 or 30 years, when it comes for me, maybe there will be a cure — but I can’t count on that.

My dad taught me how to learn from everything I see, no matter how hard it was. He was a professor of Human Anatomy and Physiology, and told me once that he was present when his mother died. He held her hand and told her how much he loved her. As she died, he catalogued her body’s shutdown, comparing it to what he’d read — because he was a scientist.

Alanna Shaikh's Family in the 1980sAnd so, now, I am learning from my father. It’s what he taught me to do. And what he’s teaching me now — his last lesson for me — is what it means to live with Alzheimer’s, and by extension, what I can do to get ready.

First, I am getting new hobbies. My dad is an intellectual. All his hobbies were brain hobbies — reading, chess, poker, bridge. Now he can’t follow them. He recognizes his beloved chess pieces, but he doesn’t remember how to play. Reading is too slow and too hard to be enjoyable, and he can’t play cards at all. He has no way to keep busy. So I’m learning hobbies that use my hands. I spend more time drawing, and I’m learning to knit. I want to teach my hands, so that when my mind can’t do it, my fingers still can.

Second, I’m living my life as fully as possible. Dad got knocked out of his game too soon, but he had achieved enough for a long, long life. The work he loved, and the impact he had on his students — it was more than most people do in their lives. His contribution to our world does not fall short, even if he ran out of time. I am trying to do the same thing — to give as much as I can to the people around me, to work and think and create and contribute as much as I possibly can, in case my time ends early.

The most important thing I’ve learned from my father: love. My father built his life around the people he cared about. Me, my mom, and my brother were the center of his world. For his birthday, he’d tell us to get things for ourselves because he liked seeing us happy — and he actually meant it. But we weren’t the only ones he loved. He loved the students he taught, he loved his friends, and he loved our extended family — both his own and my mother’s.

Mr. Shaikh and His Grandson, ZachNow, with so little left of him, my father still has his love. Seeing his wife, his children, and his grandson brings him joy. He can sit just watching my son read a book. Simply living with his family, my dad can find happiness.

The people he cared about through his life still remember my father. We get postcards, letters, the occasional package. And he is still finding new people to care about; he hasn’t lost his love for people. He likes it when we have guests over. He still flirts with all my female friends. He loves his aide and the omelets she makes him every morning.

I have never loved people like my dad did. He had patience and affection for everyone — for people who told boring stories repeatedly, for people I thought were stupid, for people who were afraid of everything, for people totally full of themselves or so shy they could hardly talk. Dad loved people I could barely stand to talk to. He used to ask me to show patience, tolerance, compassion — and I’d promise to try — with no real sincerity.

So now I am trying to learn my biggest lesson from my dad, the lesson I am trying to live every single day. I’m finding people to love; I’m finding things to love in people. I am trying to love people like my dad always did. I am building my capacity for love now, so it can sustain me later.

And if, in the end, like my father, there is nothing left of me but my love, that won’t be a tragedy. It will be my victory.


Alanna ShaikhAlanna Shaikh writes about international development and global health issues. We follow her at Blood and Milk and on Twitter; this tweet prompted us to reach out to her.

Comments
Elizabeth’s Fig, Remembered Andy Dayton, Associate Web Producer
The piece of paper pictured above is the same document discussed by Krista and Dr. Alan Dienstag in our recent program about Alzheimer’s disease, written by a woman suffering from the early stages of Alzheimer’s. You can really see how the author, Elizabeth, struggled to finally articulate the simple, poetic recollection:
I can remember picking a fig from a tree in Athens. My lover watched me with delight.
Elizabeth wrote about this memory while she was participating in Lifelines, a writing group for people in the early stages of Alzheimer’s disease. The Lifelines Writing Group was a collaboration between Alan Dienstag and the novelist Don DeLillo — and from Dienstag’s account, he was skeptical about the idea at first. However, DeLillo sold him with a simple statement, which Dienstag writes about in his essay reflecting on the Lifelines experience:
Writing is a form of memory. The phrase stayed with me for some time. I repeated it to myself and told it to others with whom I worked. I realized that for all of my work with people with memory impairments, I had thought very little about memory. To the extent that I thought about memory at all, it was in fact about the loss of memory. It had never really occurred to me to think about other forms of memory and the possibilities inherent in them.
I found myself gripped by the story of Lifelines, both on hearing his interview with Krista and then later when I read his essay. On an intellectual level, his account touches on the value of writing, the complexity of memory, and the power of collaboration — all things that I find fascinating.
But I think the real meat of the story is how it really gets to a deeper existential fear that we all share on some level — one that doesn’t require an Alzheimer’s diagnosis to experience. It’s something we also touched on recently with our program with Mercedes Doretti: a fear of disappearing. While Doretti touches on the emotional trauma caused by the disappearance of family and loved ones, Dienstag’s account of the Lifelines group gets at the horrifying prospect of losing one’s self.
This is why seeing these documents can touch on such a deep level — Dienstag calls them "acts of remembering," to me they’re small stones cast in a battle for the vanishing self, a battle that is in some ways won with every person that reads one of these memories.
Here’s another memory written by Charlotte, an 84-year-old participant in the Lifelines writing group. You can also read part of it in her handwriting here.
I remember the first time I walked with my parents on the bridge that went to Brooklyn. It was hard for me and I fell very often. My father would pick me up and carry me for a while and put me back to walk It took a little time to learn to walk all the way but I did. I remember as I write this about the cat that lived with us who also like to walk and when he saw us ready to go he was right with us and we loved it.I carried a love for walking all through my life, and even now when things go bad I walk and things seem to get better.I hope I’ll be able to walk as long as I live.
Elizabeth’s Fig, Remembered Andy Dayton, Associate Web Producer
The piece of paper pictured above is the same document discussed by Krista and Dr. Alan Dienstag in our recent program about Alzheimer’s disease, written by a woman suffering from the early stages of Alzheimer’s. You can really see how the author, Elizabeth, struggled to finally articulate the simple, poetic recollection:
I can remember picking a fig from a tree in Athens. My lover watched me with delight.
Elizabeth wrote about this memory while she was participating in Lifelines, a writing group for people in the early stages of Alzheimer’s disease. The Lifelines Writing Group was a collaboration between Alan Dienstag and the novelist Don DeLillo — and from Dienstag’s account, he was skeptical about the idea at first. However, DeLillo sold him with a simple statement, which Dienstag writes about in his essay reflecting on the Lifelines experience:
Writing is a form of memory. The phrase stayed with me for some time. I repeated it to myself and told it to others with whom I worked. I realized that for all of my work with people with memory impairments, I had thought very little about memory. To the extent that I thought about memory at all, it was in fact about the loss of memory. It had never really occurred to me to think about other forms of memory and the possibilities inherent in them.
I found myself gripped by the story of Lifelines, both on hearing his interview with Krista and then later when I read his essay. On an intellectual level, his account touches on the value of writing, the complexity of memory, and the power of collaboration — all things that I find fascinating.
But I think the real meat of the story is how it really gets to a deeper existential fear that we all share on some level — one that doesn’t require an Alzheimer’s diagnosis to experience. It’s something we also touched on recently with our program with Mercedes Doretti: a fear of disappearing. While Doretti touches on the emotional trauma caused by the disappearance of family and loved ones, Dienstag’s account of the Lifelines group gets at the horrifying prospect of losing one’s self.
This is why seeing these documents can touch on such a deep level — Dienstag calls them "acts of remembering," to me they’re small stones cast in a battle for the vanishing self, a battle that is in some ways won with every person that reads one of these memories.
Here’s another memory written by Charlotte, an 84-year-old participant in the Lifelines writing group. You can also read part of it in her handwriting here.
I remember the first time I walked with my parents on the bridge that went to Brooklyn. It was hard for me and I fell very often. My father would pick me up and carry me for a while and put me back to walk It took a little time to learn to walk all the way but I did. I remember as I write this about the cat that lived with us who also like to walk and when he saw us ready to go he was right with us and we loved it.I carried a love for walking all through my life, and even now when things go bad I walk and things seem to get better.I hope I’ll be able to walk as long as I live.

Elizabeth’s Fig, Remembered
Andy Dayton, Associate Web Producer

The piece of paper pictured above is the same document discussed by Krista and Dr. Alan Dienstag in our recent program about Alzheimer’s disease, written by a woman suffering from the early stages of Alzheimer’s. You can really see how the author, Elizabeth, struggled to finally articulate the simple, poetic recollection:

I can remember picking a fig from a tree in Athens. My lover watched me with delight.

Elizabeth wrote about this memory while she was participating in Lifelines, a writing group for people in the early stages of Alzheimer’s disease. The Lifelines Writing Group was a collaboration between Alan Dienstag and the novelist Don DeLillo — and from Dienstag’s account, he was skeptical about the idea at first. However, DeLillo sold him with a simple statement, which Dienstag writes about in his essay reflecting on the Lifelines experience:

Writing is a form of memory. The phrase stayed with me for some time. I repeated it to myself and told it to others with whom I worked. I realized that for all of my work with people with memory impairments, I had thought very little about memory. To the extent that I thought about memory at all, it was in fact about the loss of memory. It had never really occurred to me to think about other forms of memory and the possibilities inherent in them.

I found myself gripped by the story of Lifelines, both on hearing his interview with Krista and then later when I read his essay. On an intellectual level, his account touches on the value of writing, the complexity of memory, and the power of collaboration — all things that I find fascinating.

But I think the real meat of the story is how it really gets to a deeper existential fear that we all share on some level — one that doesn’t require an Alzheimer’s diagnosis to experience. It’s something we also touched on recently with our program with Mercedes Doretti: a fear of disappearing. While Doretti touches on the emotional trauma caused by the disappearance of family and loved ones, Dienstag’s account of the Lifelines group gets at the horrifying prospect of losing one’s self.

This is why seeing these documents can touch on such a deep level — Dienstag calls them "acts of remembering," to me they’re small stones cast in a battle for the vanishing self, a battle that is in some ways won with every person that reads one of these memories.

Here’s another memory written by Charlotte, an 84-year-old participant in the Lifelines writing group. You can also read part of it in her handwriting here.

I remember the first time I walked with my parents on the bridge that went to Brooklyn. It was hard for me and I fell very often. My father would pick me up and carry me for a while and put me back to walk It took a little time to learn to walk all the way but I did. I remember as I write this about the cat that lived with us who also like to walk and when he saw us ready to go he was right with us and we loved it.

I carried a love for walking all through my life, and even now when things go bad I walk and things seem to get better.
I hope I’ll be able to walk as long as I live.
Comments