morning good morning thanks for coming out on this rainy sunday morning for the last day of the full circle festival i imagine that many of you are as excited as i am about all of the different threads that have been gathering together to help support a shift about aging i really believe in this i like growing older when i turned fifty two a couple of years ago i realized i was finally playing with a full deck so for me though some of the betterness in my life has happened because of the journey that i've been sharing with my mother alice through dementia now of course any alice alzheimer's journey isn't going to start out better in the winter of two thousand and eight my mother got kicked out of her apartment and had to move up to vermont to live with us and new york was her lifelong home we all know vermont winters are long and cold she hated snow i was the daughter who got on her nerves and the feeling was mutual so it wasn't nobility or martyrdom though that led me to think this was a good plan on the surface i could say to people i couldn't bear to see or in a lockdown  that was her only option impaired as she was all her social graces were intact at that point you could talk to her for ten minutes and not realize because she was animated and loquacious and so forth that anything was going on it was easy to explain the advantages of family i could explain that our fields and woods my curve her wandering and her attempts to walk home our farm house was peaceful nature could s although all of this was true my real motivations were deep down and hidden it was unfinished business i wanted to create a bond with my mother i wanted to redo the past and i wanted to fill a hole inside of me and somehow in the middle of dementia my mother wanted to do the same thing so over the next few years that's exactly what we did and in the process somehow all these disparate threads of my life connected back together creative writing visual art medical anthropology who do those were connected i sure did and in fact i was a dispirited i've even used the word bitter and people say bitter bitter medical anthropologist when my mother moved in with us i was exhausted by years of hard work at the college of medicine i was the professor with the arduous responsibility of bringing culture diversity death and dying humanism  all of those things into the curriculum so the last thing i needed was another hard job now anthropologists tend to enter the world of biomedicine because national accreditation standards require schools to demonstrate that their students are what's called culturally competent and cultural competency is meant to be acquired rapidly unlike anthropological training it's supposed to happen in the same way things are taught in hospital wards see one do one teach one so i was a good member of my anthropological tribe i wanted to do more i wanted students to see medical systems as cultural systems i wanted them to see social and political determinants of health i wanted  to see the social aspects of science i wanted them to see racism sexism ages and able ism heterosexism and all the other forms of structural violence that are invested in biomedicine but most  students cram scientific facts into their heads i wanted them to track their own responses and witness their own responses as they heard patient stories firsthand and raw i wanted them also to write their own stories and though i was really proud of the program i had built i desperately needed a break from that world and through my mother and so after several months of actually enter my mother disappearing alice alice doesn't live here anymore in september two thousand and seven i was about to give a lecture to first year medical students on culture and medical decision making when the phone rang it was the lawyer for alice's new york co op apartment calling me to say that considering the apartment fire the previous month the co op was now requiring her to have around the clock help this was the first i had heard of the fire but it made sense a few weeks earlier peter my husband and i had been troubled and perplexed by the state of her home when we drove down from vermont always imagined and welcoming before on this hot august day the air conditioning in the unit sat on the floor in front of windows shut tight and the apartment was stifling and dirty we put the units back in and cleaned but she couldn't explain alice 's memory of the fire department removing the units in order for the smoke to clear had disappeared so we set up around the clock care but she hated it they follow me around like the gestapo she said a proud hard working career woman she did all the cooking and cleaning for her family of five without any outside help and next we try to one bedroom apartment in a nearby senior living community and after she kept trying to walk home they said the only option was the lockdown unit they urged us to find another solution because she was still too well and that's how she came to live with us alice lost her home she was disappearing internal governor of people with alzheimer's also disappears they say exect lee what's on their mind and alice found parts of herself that she kept hidden from her children anyway she wished out loud that she had gone to medical school instead of becoming a biology teacher and so at last the years of her pushing me in that direction made sense and when she stood in my kitchen window admiring the cabinet that i had hand painted and said you should quit your job and make art full time her loss was my gain alice timers so after several months of trying to balance full time work outside the house the home care it in c i followed alice's advice took a leave of absence and now i'm here story we connect through story we think through story we remember through story when i first started recording alice's story just as i had my own development i was an artist first then an anthropologist that was my idea of being practical before i became a writer i turned to art i turned to graphic storytelling in the fall of two thousand and ten and i have an artist friend who lives in beijing and she and i made a pact that we would make a drawing a day and email them to each other and i kept on sending her alice drawings even though i had been before that time i was making big abstract colorful paintings but i started sending her alice drawings to process my own grief after placing my mother in memory care but i also want to remember all that magic and the laughter that we shared during those years so i found the stories voice the day i made this picture i cut up a cheap paperback copy of lewis carrol alice in wonderland to make her bathrobe which is alice's very favorite garment most days with alice it when she lived with us included this exchange time to get dressed up and very comfortable we went on outings sometimes in her bathroom because it worked but it was only after drawing this first picture in its entirety that i realized that the halos that it appeared around her head were a subconscious reference to armenian manuscripts and that was a reference to her childhood and her first language and her altered magical state i know this much to be true when we go back and forth between the subconscious and the conscious between the visual in the verbal we tap into our shared collective memories and stories improve and we really need these stories to be as good as possible because stories are at the heart of healing no cartoonist and author illustrator mobile him says said never start a visual story on page one because it takes time to find the voice so after this drawing i knew i had found the voice and i went back to page one and i filled a mole skin sketchbook with twenty five drawings and i want to just show that to you quickly alice is disappearing soon there will be nine days with alice to come around seventy seven years times three hundred sixty five days equals twenty eight thousand one hundred five plus twenty one since her birthday and then appearances days without alice of course i wasn't there for all those days but i was here on december second two thousand and ten making twenty eight thousand one hundred twenty six marks in her honor she isn't losing tangible parts there she is disappearing she didn't take off there she has special powers she's still here she's just losing her memory the part that kept her grounded alice timers that broccoli grew out of alice's years she saw endless possibilities broccoli is good but apples are better tree cool dave died four years ago alice sees him when she looks up pirates help alice i'm starving those lousy pirates they kept me on that island for an entire week without feeding me anything got any ice cream so does the dog they  herbie ate my lunch do you have any ice cream or sister sublimated their sibling rivalry into their respective preferences for cats and dogs alice feels bad about herself sometimes sunsets are scary it's world were two japanese soldier surround the house or worse theoretical physics helps out a said sunset space time travel one of her special powers accounts for all that she has seen but it's always safe when she lands back at our house in two thousand  alice i know who i was when i got up this morning but i think i must have been changed several times since then so yes it's a love story and i showed it to my mother the first time i shed a tear i said look here this is a love story inspired by you and my father and you and dave and the first time she paged through it and she said oh yeah there she is and she especially loved the the sort of the romantic climax the later i showed it to her and she kept on trying to turn the page to read the text from the alice in wonderland now this sketchbook project that i made these drawings for is really a fascinating thing because it reverses engagement with art and books art we're not supposed to touch books were allowed to handle we bring them into that and so on and so forth a sketch books are housed at the brooklyn art library and you go in you check them out you handle them and they disintegrate and disappear and all that's left are digital images and for me this was just so much like letting go of my mother letting go in life and death and but just as in life as their originals disappeared new layers emerged and i began writing stories to accompany the images and then i started posting the images up on the blog with the stories and then i printed digital images on to canvas and then i started embroidering  her halos and her slippers because those seemed to be so important and then when i looked at the threads that were left behind i started having to make drawings and write into the backs of the canvases and then as i was  using an all to poke through the canvas to save my fingers i thought of another layer my grandfather a survivor of the armenian genocide of one nine hundred fifteen was a shoemaker in new york he must've used in all every day at work and there i was poking every day with you all next i switched over to sewing into paper which was sort of like a professional metaphor for our delicate connections and this is the backside  of the paper with all of that those stitches into it we've got all these delicate connections but we have to keep on regrouping through this sickness to find what works just at that moment so this is the power of stories story generates things now why bring pictures into a story particularly pictures that are associated with the lowly comic book form well for me it's not because hot but they certainly are hot and it's not because they're now an academically acceptable format they're new here review journals devoted to them believe it or not all the time they've even made their way into medicine lustrous johns hopkins university is hosting the fifth international comics in medicine conference i've been to two already they're fabulous i'm going to be in baltimore in june talking about alice timers  it's not also that they're very commercially successful i mean they work for people of all ages if you recognize the wimpy kid their favorite but it's not their simplicity or their look that draws me to them or their popularity and commercial success though that's a nice thing at times it's their depth comics allow for complex multi layered storytelling and the reason they do that is because it's a medium  it relies on us to take these fragments and put back together put them back together into a concrete story and because alzheimer's and dementia is all about living with fragments and putting things together i mean all life is but it's so so but i switched over i wanted to make this be in comics form mostly though because of my mother and here she is are so far out in underhill eating up every single graphic narrative that came into the house and she read widely she loved alice and that tells the fun home she loved persepolis robot dreams is it's got about eight words it's usually for fourth graders but it's this beautiful friendship story and the words are things like you know but at the end she was sitting on the sofa this is a great book so i think all memory care center should have a vast libraries of graphic narratives because as people go into dementia they're losing language and this them ways to access stories comics are also good though because caregivers and those who are sick need to laugh and thank you for laughing at this so consciously we associate comics with laughter the medium itself lets us laugh it gives us permission to laugh and then once you laugh you have new ways to cope this is something that i learned from alice for her seventy six perth day my mother alice wanted spaghetti and meatballs and the military with chocolate icing we gave her a small black kitten with white spots when she asked so how old am i she gave us a new theme song for the year seventy six trombones when did that happen seventy six trombones led the big parade alice remembers all the songs from the music man and countless others from her youth the present is more elusive these days she doesn't remember that she has alzheimer's but she used to and she always sings one may morning she stood by my windows in the dining room looking out over the rolling fields and she sang this bit from babes in arms us we stood and talked like this before we looked at each other in the same way then but i can't remember where  what clothes you are wearing the clothes you wore the smile you were smiling you were smiling then but i can't remember where or why and then she stopped and she smiled and she said that should be the al timers theme song besides leaving a laugh people caregivers are for the estimated thirty five million people globally who have dementia there are tired group and they don't have a lot of free time comics are great because they're fast they compressed narrative you just take one look at that and you know this story is going to be light and fantastical los angeles installation artist robert irwin has said that seeing is forgetting the name of the thing one sees in other words when you really see words disappear now what does this mean in terms of dementia a forgetting of losing words comics let us see and forget at the same time the words in the images stimulate each other as they co exist on the page and i want to take a moment with you to explore this and let us experience words and images outside of the context of comics to see how they work in our memory and how they work and stories and we're going to do this sequentially first with an image and then we'll look at some words relating to the same image and as you look and listen track your responses ok here's the ok now i'm going to ask you all to be a little bit brave knowing what highly visual primates we are and i'm going to ask you to close your eyes and to listen to this poem by norman r nikka the dead children were laid out in order upon the sidewalk in their wives starched dresses in their pitiful wide dresses on their foreheads and breath are the little holes where death came in as thunder while they were playing their important summer games do not weep for them madre they are gone forever the little ones straight to heaven to the by warplanes and of the german and italian forces who sided with franco in the spanish civil war so now take a moment and just talk to the person next to you or you know over three about what it felt like to look  to listen were they the same what did it feel like in your body just take a minute to think about that and reflect with each other they make you see things in your mind from those words and a painting what you tapped into that oh i've seen it already the other thing about it let me just ask you a question which felt longer shorter like the looking or the listening to time feel just the same what was the looking felt way longer well guess what they were exactly the same about of time what happens is our brains take in visual things instantaneously and stories  word spread through time so so some of that is that we're getting really uncomfortable looking at this thing that we saw down at moma when we were kids or whatever and  because we can take it in all at once and then only slowly over time might we do something like focus in on the stigmata the man's hands or the mother holding the child or the horses pierced but really we had a feeling from it already and associations from it  images that absolutely memory is tied to images images six percent images express think back to your childhood think back to those earliest memories from a moment their visual for a moment be just like someone with dementia holding on only to those oldest memories most of which are visual that's because in each of our lives we could see long before we could speak did you know that at birth a baby's eyes can focus only about six to eight inches which is just the right distance when someone's holding them and it's only slowly that the rest of the world comes into focus and that's months before words years before paragraphs many many years before paragraphs concatenated into story so has slowly the world comes into focus but also in evolutionary time we were much better with visually compared to how we are now in order to gain language capacities we actually gave up all sorts of visual functions on the left sides of our brains to make room for words and some of us have kept more on our right sides but there are a lot of people who are are really worried oriented rather than visually oriented but it is true chimps can be students at visual computer games and not to mention the long long tradition of pictorial storytelling and also that the earliest languages were  and the holiday tradition of illuminated manuscripts and these are up here to remind us how recent a phenomenon widespread literacy is so we've had language for hundreds of thousands of years but really widespread literacy is is a very recent thing only hundreds of years now let's go back to an individual human time scale and your earliest pictorial memories think for a second about a favorite character from one of them a childhood story and how you  picture of them in your mind who's got one a picture of his black beauty absolutely absolutely here's one of mine and because this is a picture book with a great rhythm this picture for many of us also simultaneously evoke sounds in an old house in paris that was covered with vines live twelve little girls and two straight lines so memory is really all about sensory perception sight sounds smells tastes rather than words so all of our strongest memories are sensory and they're embedded deep into our subconscious and i located my subconscious here which is really funny i guess i have it's usually scientists tend to think it's there but who knows maybe it's in our entire bodies pictures ability to tap into th sub conscious process for both the composer and the reader give graphic storytelling its power and in turn that power supports people with dementia it can heal and support individual caregivers and most importantly it helps rewrite the dominant narrative of dementia and ageing globally and the dimension narrative the biomedical narrative really needs a rewrite this is a zombie story ok its body is without  walking along there and while there of their loved ones are are languishing in waiting for valiant researchers to find a cure and of course there is loss but for us alzheimer's has also been a time of healing and magic and laughter so that if we really frame dementia as a different way of being as a window into another reality this lets the people living in that state be our teachers useful true humans who contribute to the collective good instead of scary now if you believe like alice that biology is the central dogma and that science is the only way to understand sickness and health then finding good in a disease state at the end of the lifecycle is a kind of uncomfortable notion but for anthropologists as i said earlier medicine isn't just science it's a collection of beliefs and practices so pretend for a moment that you're an anthropologist from mars and you just landed in this room what's going on an what does it say about beliefs about bodies what is this a safety does that image conjure safety or danger to you what what do we know about the place of women from looking at this way of bringing young ones into the world we're coming full circle old young what's this culture's relationship to technology how about any sensations did any of you when when sue said c section did you feel something on your skin because you know that they're making an incision there did you smell the anesthetics the antiseptic as children we all learned what how our medical system worked and we learned it in very simple ways like from the story madaline it gets a ruptured appendix and she has to go to the hospital and it gets taken out we've learned that the right way to be sick in our culture is temporary we have learned also that we go to the authority figures to validate whether we're sick or whether we're well think about it what did you do when we didn't feel well what did you do when you were little went to mom and what did she do because our medical system works on measuring things and you know you're really sick if you really have a fever so our medical system is one where then you measure it you know what's wrong and then you the authority figures can come in and  tell you how sick you might really be our medical system is also focused on fixing broken bodies and mind body dualism is so much a part of that and so natural that it's really easy to forget science is great it's done great things but our medical system is just pacific bodies whereas anthropologists locate sickness in three interconnected bodies we all know the physical body and there's a little physical body right in the middle but then there's this social body that surrounds it in the social body gives all the meanings to everything that your physical body experiences and then there's that giant political body that that controls all the finances and the politics which distributes sickness and health in a society the poor get sicker the rich stay healthier and so all of these things impact our state of being in our sickness now because the social body constructs the ideal body it legitimizes different practices like like plastic surgery or tattooing a ritual scarring or her in your look that like that or whatever it says this is the way you should be  also then if there are states that people fear which is the case when you've got as temporary sick role as we do in biomedicine then the social body pulls away and those states are stigmatized and we we anthropologists have a particular name for that and we it's called social death those squares there represent biological birth and biological death so the emergence of the room or that last beat of the heart or that final breath but the brackets there represent how each society defines when life begins or ends when person conferred or taken away so for example all of a portion controversy has to do with different definitions of social birth and at the other end of the life cycle our belief in brain death and that concept let's physician harvest organs from someone who still has a beating heart so that's it has lots of impacts our medical system also located cysts sickness very specifically inside the bodies of one sick individual because our medical system fixes broken bodies but as any family member knows we live the sickness too and lots of other cultures don't say it's just one individual who's sick they locate sickness instead in families or in communities now this is where comics are so important when there's stigma and silence and social death surrounding a way of being that's rejected by a society and those those things echo through the hallways of hospitals and medical school lecture rooms and textbooks and this is where comics come in they rewrite that dominant story they can rewrite it like this i was in armenia almost all of last year and alzheimer's disease is so stigmatized that people said we have no alzheimer's disease here and for every time a person told me that someone else would in private say it was so awful what we went through with my mother or father we were and dementia we were completely isolated and alone so comex can start bringing this stuff back out into the open when i told people about my mother they invariably said to me that once you survivor of the genocide as though that collective devastating memory might account for her losing her capacity to remember and that's because that social body each culture gives the meanings to the physical states and all those meanings match our beliefs and practices so think about something like this the alzheimer's association reports that there are very low rates of alzheimer's disease among american indians is it genetic could it be genetic well probably it's more likely that it's spiritual life is much more integrated into their culture and the way that that our cultures and that the way many of the american indian groups think about people who have dementia is that they're between this world and the spirit world and their lingering here because they have some unfinished business that they need to work out before they move on out simers disease in our culture though in north american context the biomedical  with mind rather than body problems a location at the end of life cycle chronic uncurable accompanied by increased dependence in a society that values independence and youth above all else need story story and other forms of metaphorical out of communication let us take death straight on quadrille alice practiced dying on a regular basis get a shower curtain or something which you to put under me in the middle of alzheimer's disease she retain this bit of scientific knowledge that our bodies let go when we take that last breath i don't want to make a mess mirthful usually happened around sunset i would sit with her my dead father and her parents hovering in the air around us alice took tiny steps toward th then back to me our own lobster quadrille she was truly in between liminal between two social states transcending two worlds though physiologically she had no signs that biological death was and i will you won't you will you won't you will you join the dance in the middle of alzheimer's disease alice knew we needed to practice because death and dying remain relatively hidden in our culture our medical system equates death with treatment failure so the medical personnel hand off the situation to another kind of expert religious perhaps or secular the funeral home director alice knew death was coming so we needed to rehearse will you won't you will you won't you won't you join the dance in our culture where death is taboo aging is not celebrated a person without simers experiences a social death long before his or her heart stops beating somehow for the rest of us they're not as fully human as they once were when they no longer recognize their own families and can no longer speak the rules for interacting with them and caring for them shift in the middle of alzheimer's alice somehow knew this de was already happening so we needed to her as a good member of my culture i knew that recognition was the socially legitimate threshold for changing the rules of care peter and i came when peter and i came to the end of being able to continue with alice in our home the transition was ok we had her first would not could not would not could not could not join the dance a few nights before alice moved she gave us a story to explain the transition to others i just talked her into bed and had gone down the hallway to my room when i heard her calling loudly as i ran back to her room i could make out the words i open the door what's up that's her nickname i just wanted to know you're in there in a pretty name thanks you gave it to me and if i just call you'll come it might not be but i promise you someone nice will come off that's good thank you all sleep well knowing that well you won't you will you won't you won't you join the dance alice timers images and the words of a graphic narrative bring back the humanity of a person with dementia we see alice she's real she makes us smile because you are my mother good to me because you are my mother and i had just finished helping alice get dressed picking out clothes to wear and getting them on by herself was long since too hard now i behind her brushing her hair as she sat at her dressing table our eyes met in the center of the three part mirror that had stood like a folded screen on her dressing table for as long as i could remember because you are my mother big pregnant pause your mother and another alice turned to face me who's your daddy you were married today you had three children marks the oldest  susie's the youngest yes i remember alice turned back and i kept brushing watching her through the mirror she looked up and found my eyes in the reflection wasn't very good to you i'm sorry unfinished business that's one of the reasons she was here living with us but i didn't have her imagine that i would hear these words stated so simply thanks so you forgive me of course on an intellectual level i had forgiven her years before how come because you did the best you could but i knew that if i wanted it out timers would let us have this conversation every thing forgiveness is also action action that lets me redo the past i wanted to stand at the same dressing table and brush her hair without yanking without getting annoyed at her knots and chopping all her hair off i wanted to listen to her as she spoke about her day i wanted to guide her through uncharted territory i wanted to faces sickness of the mental sort straight on instead of sweeping it under the rug the rhythm of the brush soothed us both when i set the brush down on the dressing table next to a bowl overflowing with the strands of beads that alice loved to wear she turned around to face me again and said running a hotel must be very hard ali often when i'm sitting down to write in response to a drawing i'll cruise around the mayo clinic website and get their take on a situation and then i'll offer practical alternatives physicians medicate hallucinations and we used a superhero approach and she had special powers noticed too how in a single image conflicting realities can co exist just as they do for people with dementia and their caregivers and seeing these two realities on a page can make it easier for a fairy pirates alice escapes the captivity of alzheimer's through story pirates the ultimate hostage takers often lend her hand now i haven't seen these pirates myself but they're pirates with a dashing johnny depp famished but content i like these pirates now was it traces of familial recognition that had alice from mistaking her three twentysomething grandsons for dashing pirates peter their father did not have the same luck once when i was away the pirates turned threatening and she made him into her fellow captive you get into that b teacher told me it was like someone a jury's just hoisted the jolly roger up the mast to warn us of new danger on board the mother ship peter calm even in captivity said i'm sorry alice that won't work i or son in course immediately oh no no you're right that won't work then a long pause who's like the water dana how old am i seventy six seventy six trombone seventy six trombones led the big parade alice sank the pirate slope alice timer's the second story carried in the images also helps with the care giver receiver reality just junction if we just heard those words without the image they know herby ate my lunch to have any ice cream we wouldn't know what really happened with it so that's the multi layers again of the combination also comics let us break rules whereas medicine remember that social body is about following the rules and social control so a physician has to talk about you must prevent the wandering of alzheimer's whereas we were free to let alice wander with the dog because it preserved her dignity so i could use this picture to tellers tell a story about how she did it and ended up a couple of miles away in the jolly gas station eating a sandwich and how it all turned out just fine and this might give a frustrated caregiver a bit of respite or a laugh or a new idea this image was an opportunity to talk about ritual and rituals are those repetitive actions with symbolic meaning and there's ritual in medicine the ritual of the physical exam the ritual of the white coat and i got to talk about how i stepped outside the by a medical model to find what worked for alice while still honoring her love for bio medicines ritual those white coats the disinfectant bite of the exam room the rustle of paper on the exam table these never failed to transform her into a trusting patient my father in the branches of one of our neighbors trees at first i wondered if he was a tree as in a difficult or in various ng situation or was it webster's sense of the phrase to put into a position of extreme disadvantage and was it like the possum up the gum tree say from the dog's breathing hard from the chase but still kind of stock my father dave isn't about to tell us lung cancer treated him and he died in two thousand  after fifty two years of to multiverse marriage alice and dave were tightly bonded as with superglue they often express their love through bigger and counseling to find less stressful ways to relate didn't appeal to alice hence my interpretation of my father's treat position but with time the meaning of alice is seeing him up in the tree became clear it was longing longing for him longing to make amends and there it is up in the branches waiting for her sometimes when alice knows she's saying something that i can't like my father up a tree she'll say do you remember that time the dave climbed the tree and we were looking all over for him and when we were about to give up he called out to us she's a good storyteller and like all of us she used this story to make sense of the world though she was raised in baptized in the armenian church my mother was never religious she like my father who was raised by a communist grandmother was spiritual but not religious my siblings and i followed our for our friends to everything from show on saturdays to methodist sunday school the quaker meeting but when alice looks up and she sees dave her old self would never have called it heaven but her new self is flexible enough to use the word heaven metaphorically her new self also embrace t therapy a mind body integration method that taught her to use her own body gestures to process and express regrets with martha whitney who's here today a gifted there has to tracks her clients with deafness of a diana monkey moving through the trees alice has learned about her own gestures when she misses dave she puts her hand on her breast bone and move now even if alice is inside and it's night and she can't see the trees and she asked where's dave we can tell her to place her hand right there and to look up and then a stories can also help family members follow those odd bits of story their demented loved one might tell lots of times what seems delusional is just desire sometimes what seems delusional is something that the person needs to talk about alice called from the sofa her voice high and panicked is that what that might be circling overhead the blanket that i had tucked loosely around her toes at the start of the nap was now pulled taut she gripped it from underneath all of her eyes and the top of her head p out i think i grew hopeless can you check she let me peel back the blanket to see the hooves you sure i touched and counted each of her five fingers and toes for good measure and she started to relax and my head this is ok there's nothing growing there just your hair i stroked her head to show that it was smooth and that i wasn't working around hard pointed horns thank you that's such a rel it was a moment more intimate than the daily help in the bathroom she had revealed her deepest fear that she was no good it was an intimacy born of alzheimer's expressed in the language of hallucinations assertions and questions are you feeling bad about yourself i asked my hand still resting on her hornless head she swallowed hard i wasn't very nice i wish i had done better you did all right how do you know like a student of medicine she wanted an algorithm system proof did you know that to die in peace everyone needs for basic things like the food groups she set up tall or what emphatic to forgive others she paused a moment and then said you know i never would have gone to college if my sister didn't pave the way and to forgive yourself she took a deep breath in and then let it out forgiving yourself is the hardest i know but you were younger then maybe you could cut your younger self a break how did you learn this stuff from you l know that but it's still good alice timer so is called i'm opening up like the largest telescope that ever was this is stead alice said as we drove east on one of long island's main asphalt arteries you're not taking me to see my sister are you that hot july day could have been a beach day but we were heading out for some old fashioned ancestor worship no we're going to go visit your parents grave that's a terrible idea alice haven't been to the grave since  a center of resistance during the genocide vons armenian inhabitants have all but vanished in new york yankee shared married all who died and fathered three children rose alice and rosemary was alice is nice they did not get along rosemary died and rosemary died young from one of those cancers linked with the gene some first cousins choose genetic testing after learning this information but for me that's a terrible idea the scientific evidence is too gr she died in june after the visit you said it was good to have a sister again really i said that alice shook her head somewhere along the way she lost hold of the principle that it was good to share with the planet with someone who shared family memories and fifty percent of your genetic identity now in our nia people often referred to my genetic memory as though i had a series of latent co dogs that could be expressed only in the homeland genetic memory let me learn dance steps it accounted for my spiritual bent and it helped me speak armenian you're vomits me too we're family in this culture blood counts genes count family counts the first time i saw a model of d n a it's beautiful double helix shape twisting up from the lab table i was lolling at the back of alice's classroom too sick to attend my own school but too young to stay home d n a said the axioms of biology pervaded my childhood home but so did story here's mine i won't be getting tested for any genes associated with alzheimer's disease i prefer the certainty of the stories i've inherited inside greenfield cemetery in new york we found the grave and that's another story we planted flowers beside the box with that aunt rose had placed in the earth so many years before we should visit my sister don't you think she lives right near here alice alzheimer's shows the benefits of this kind of fluid sense of time but it also shows the benefits of living in the present moment my mother had unmitigated and repeated joy cut flowers on our dining room table so like buddha they make us stop and pay attention they live in the present moment and as we write that alzheimer's story i want to emphasize that humanity exist without language both from an evolutionary perspective and in our own individual development we had our sense of vision long before we could communicate we could do it with through with words we did it through looks and i through facial expressions through actions through gestures and as alice lost language she found other ways to communicate curiouser and curious incontinence might be a turning point peter said this was before alice moved in with us alzheimer's disease typically has a twenty ten to twenty year course and we were trying to imagine the endpoint of our ability to cope at home first son in law and grandsons through bathroom accidents might be about right but i had a different turning point if she gets mean i told peter i knew that side of her already sure enough the adult diapers came long before the meanness i remember only the very first accident on my way out the door for some respite it was so like a toddler unnerved by mom's departure trying without language to express that emotion to keep her home after that messes were away a lot of life and alice was baby sweet surely toddlers evolve the king cuteness for a reason toddler messes are big and their behavior challenging the same was true for alice adorable is adaptive and alice was adorable ever full of compliments and excitement for her each moment was fresh and new when she went for a walk with the dog she came back with bits of nature these are for you she'd always say handing  treasures wild flowers fall leaves an acorn but the biggest gift she gave me took place that first spring that she lived with us we were driving along that same country road that we took to get everywhere where  get here she asked you're in vermont you moved here to live with us a while ago because you have alzheimer's disease and it isn't safe for you to live alone you live here it's pretty big stands of lilacs in full bloom surrounded the homes we passed their scent filling the air cows and fresh young calves chomp the green grass down in tufts and fence fields hay ripened in others alice put her hand on my shoulder promise me you'll do something else when it gets too hard i promised wondering how would we ever recognize that moment alice made it easy since she no longer had the language capacity to express what she knew used action she did it when i was out of the house she hit peter her biggest comfort to sion for my attention with a broom and threw things at him and instead of letting one of her grandsons help her with the diapers she took them off and hid them in my studio i knew it wasn't meanness she was simply telling us it was time for something else when i explained to her that she would be going to a school for people with alzheimer's disease alice relaxed and those behaviors evaporated good she said i love school alice timers so is my mother progress is further abilities will persist even as language disappears completely and for all of us as we rewrite the alzheimer's story will improve the quality of our all of our lives by giving back to people who have lost their short term memories some of their lost humanity above all stories have the power to heal and healing is not the same as curing the disease that's what biomedicine does healing is all about creating shared stories shared social meaning it doesn't take place inside of an individual body it doesn't involve surgery or taking a pill this social process depends upon sharing stories with others and letting our collective memories meet and by meeting through story we make peace and we move on even if we're sick and hurt or dying i'm like us i was never close to my mother not counting those first nine months and the six months that followed when she breastfed me unlike most mothers in the scientific one nine hundred sixty s were also of course i breastfed you she had said when my first son was born and then there were all those fine meals an enticing home filled with unusual things to large striking oil paintings by her friend gaylord florrie i hand out a drug from libya a carved wooden chest from brazil a backyard with a vegetable garden surrounded by fruit trees but no we were never close until alzheimer's it wasn't billy collins is warning truth that you can never repay your mother that led me to have her move in with us when the lockdown alzheimer's unit was her only other option lanyard together many times it was our unfinished business of finding a good close when i was a little frugal alice would let me nibble off the remaining bits of red from around the excise stem of a tomato you lived in a walk up railroad apartment on fifty six street when that was still a bad neighborhood two thirty three east fifty sixth street six stories multiple apartments on each floor with a shared toilet in the hall her building is long gone replaced with nondescript offices and there was a slaughter house and in the processing plant down where the united nations is now i learned this fact when i was doing research for a novel the smell was horrible i can imagine but the best facts i learned straight from her sometimes my mother studio lamps had for supper i wouldn't touch it i'd go to bed hungry but my sister every negotiate social boundaries know that birth and death aren't just biological happenings be an anthropologist to your own life and remember that when you show the faces and the daily reality of someone with alzheimer's disease or some other thing condition way of being that stigmatized you remove that and you restore the humanity comics a medium that excels at breaking rules lets us rewrite the dominant narratives and graphic medicine comics gives us ways to see the world through the eyes of others those who are heard and to feel their stories and to remember our own and to heal and to fly over the world as alice does each day thank you and that's again the sort of the biological definition of family is lots of other cultures don't do that you get to adopt each other and you say you know will you be my mother i need one or absolutely other questions also in with a question that i get asked a lot i got asked did in our nia last fall i gave a much more public health oriented talk and it's really funny because what this journey has let me do is love the parts of anthropology that i love and then to leave the academic stuff behind but that night i gave a more academic talk because it was a public health seminar and one of the professors at american university of armenia was outraged that i would break my mother's by telling these stories and you know i explained that i thought long and hard and i know her well and that i and she would actually be honored that this was doing some good there are other people if my mother had a different personality i don't think i would have gone where i went but this she would love she would laugh out loud at every joke and the other thing is that i believe so passionately that sickness doesn't take place inside of individual bodies it's a social thing and that so often the people who need the healing with dementia or something else that's incurable it is that larger social circle and so we've got to stop thinking about individuals and broaden it so so  working is the ways around the system to so medicare will still pay for things but then we can do what will really hel some other things you know other big problems in the world like you know dying dying starving children and accept that we are all going to die and really it's she had the benefit of being able to make peace with things that she wouldn't have been able to make peace with because all of those social rules that were so intact before dementia prevented her from kind of opening up so the happiness i think is from the work that she did because she was earlier i mean there are the stages of dementia and some of my stories really deal this deal with a straight on the you lose words you don't remember to swallow so you have food in fact i've just learned that my mother will get kicked out of her memory care place if she starts pocketing food and her cheeks and and because it's a choking hazard so there are all sorts of it is just losing functions one by one by one and so what i like to do with that i know how it affected me personally you're welcome thank you how it affected me personally as i made an advance directive  that is that says if i'm in diapers with dementia i do not want and her and i really think that as a society we have to start looking at this and and so that's why i mean there are a lot of so upset with the amount of money that is being spent right now and we she's had pneumonia and bladder infections and so many different things and and she actually had a pretty good advance directive anywhere there's no drawings are in this book alice timers but i'm working on a part which is a longer graphic memoir and i'm really going to take on all of those ideas because we need to be talking about this stuff and i think that if we talk about it  only thing that i found the most helpful is when we had someone come in as a caregiver who was creative and not and flexible and you know could just break rules because that's what this situation requires and i it made me think it again to a structural level when we set up home care agencies they're very low paying jobs for the actual workers so they're upset they're not making a living wage they've got really tough lives and they're not in a good position to take care of creative people so i ended up i found a couple of good people and we broke away from the agency o kids were just brilliant i mean they they because what it requires is just kind of playfulness and so so one of them he was going to use v m while a while alice was living with us and they would sit and watch sports together sometimes and she'd be watching the hockey game and she did say to him you sitting right there they just being able to kind of not insist and go with the flow and i even took this one of bernie sanders town meetings brought it to the level of him and the department of health and human services i think we need a program like teach for america that will lead college students pay for their schooling by spending time with old people because it needs smart engaged people like you but you couldn't afford to work for home care agency the pay model and i mentioned martha whitney i thought that it was just sort of understanding this was just another way of being and not something that needed to be fixed and that was the most helpful and just kind of being able to  work with what was there because when the layers peel away some wonderful things are there so thank you for the question a witch and one of my dearest friends and it would just freak her out to have just the unpredictability of family life and when she went at that point to memory care it was very consistent and lots of activities it really was like school and and they got it and they liked her and they laughed and they so it really they could provide something that we couldn't provide they could stick to a schedule that's pretty hard to do in a family and we kind of it incorporated her into family life and it worked for a long time but then she really needed something regimented and it was it was right and she kind of stabilized and was at a plateau for a while and now she's going down again ye disaster and she hated it and actually managed to escape  mean she just she kept her eye on that elevator and then just got it and they kicked her out and then we found out and she hated it because they were too rigid she wasn't allowed to  when she wanted to and i mean the pirates were still keeping her on the island and she was always hungry intil maybe this past year sure that sort of calmed down but it was like torture for her and she had to get out of there so