my mother's name is alice and when she had dementia she came and lived with us she had gotten kicked out of her apartment and she was still too well to go live in a lockdown unit and i wasn't especially close to her and yet i could not imagine her any place other than here and so she moved up here and it ended up being this incredible time of us being able to kind of heal and laugh and enjoy a relationship that we hadn't had before so the aliceheimer's is how i started thinking of it instead of alzheimer's that'd just be the sadness of the loss i watched her use the loss as a way to kind of gain other things so she kind of was able to do a lot of things that she couldn't do when all of her kind of social conscience was getting in her way so she in some ways was more herself and that was something that we could together really run with and have a good time and so we handled lots of aspects of dementia differently from most people so i started drawing about it and then writing about it and now those two things are really integrated the original drawings of course had the little writing on them too when my mother lived with us i discovered graphic narratives i just fell in love with the medium and i was using that time to kind of push my creative writing forward so and i was bringing all sorts of graphic narratives into the house and every last one of them my mother just loved reading and so i because she loved the medium so much i knew that when i wanted to tell our story that that was the right way to go i was messing around with comics i was sometimes trying to do it just completely digitally drawing on a tablet pc but i'm a little too oldfashioned for that and i didn't really find the voice until i got back to paper and i found the voice for the work the day i cut up a cheap paperback copy of lewis carroll's alice in wonderland to make alice's bathrobe and i had already been doing a lot of collage work throughout my life i've done collage work and the minute i did that i realized i know what the story how to tell this story i sat down i did my sketchbook december 1st through december 23rd i just pored through it kind of in one of those white heat frenzies and because i was a storyteller as well as a visual artist my sketchbook really told a story i'd started on page eight cause i knew like i had found the voice there with the bathrobe and the halos and so on and so forth and then i went back to page one started telling it and then kind of knew how it was gonna go till the end then people all of those were posted digitally through the brooklyn art library and people started commenting and then people who i shared the link with who were part of the project said we want to be able to comment on this and we can't make comments there you should start a blog so i put them all up on a blog and then i realized that blogs work better instead of having twenty six drawings on one post to make them come out one by one so in january of two thousand and eleven i began using each drawing to then inspire a vignette a piece of a story about our lives and interactions and then from there because of course i'd given away the originals to the brooklyn art library i started playing around with printing them up i had digital copies of everything but printing them up and printing some of them up really large my oldest son when he first saw them said mom i want to see these gigantic and so i made some so that alice was lifesize i made some smaller sizes and then i started sewing back into them first on canvas but then i switched over to sewing into paper and while i was using thick materials i'd print on a thick material it gets hard to shove a needle through a material and so i kept on so i got myself an awl to poke holes in it and then i realized that oh my gosh my grandfather was a shoemaker he probably worked with an awl all the time and so it was sort of all these different layers kind of came about through the act of making the drawings and then revisiting them and retelling them i think when you're a medical anthropologist you understand medical systems as cultural systems that are beliefs and practices and the medical medicine in the united states is about science it's about doctors who know the science of our bodies and how to fix it and so it's really great with the kinds of things that doctors have already figured out how to fix but in something like alzheimer's it's still uncurable and most of the efforts in our culture are about raising money for more research and this is a lovely thing to do but in the meantime i know they're not gonna cure it for my mother and i'm not sure when that's gonna happen and i think about death and dying and i want us as a society to be able to be more at peace with that and that when an illness is at the end of the life cycle and maybe we can't change it maybe we're never gonna be able to figure out exactly what's going on with the plaques and tangles well then maybe let's just change the society so that we can make it easier on the people that are living in that different kind of a state and i think that one of the best ways to change things is humor and i think that if we laugh and we lighten up about what's going on then we all of a sudden get creative and we have new ways to handle it one of the biggest things is that physicians view hallucinations always as something that we need to medicate i mean that's a symptom of something that's bad my mother does have a kind of dementia where she does hallucinate a lot and when she was with us we just got so we understood them we could read them we could kind of learn from them so at first it was just seeing my father and the maple trees and i finally figured out that she was just missing him and wanting to make peace with him and she kind of i don't know if it was subconsciously but there he was up and in the sky somehow or another you know maybe metaphorically approaching heaven and or something like that and so or she would sometimes see her parents and be trying to make peace with them because i think at the end of life everybody needs to make peace with others and with themselves so we use those hallucinations as a chance to talk about those things and make peace and we used so instead of saying they're not there and of course he's not there and trying to correct the reality we would just say oh you're in a different reality and sometimes it would happen a lot of that she would think she was around world war ii and that there were soldiers around the house and or she'd think that we were eating dog meat for dinner and i'd have to say no no it's steak we bought it at the country store or what have you and so i would just sort of explain well i'm in two thousand and ten you can buy this from the store and she was very comfortable saying oh okay i'm in one thousand nine hundred and forty four and you're in two thousand and ten that makes sense and we could just move on whereas if i had said what are you doing in world war ii again it's not really there you know it would have been a conflict and let's see we incorporated rituals into our daily lives that sort of made were soothing cause that's something that anthropologists always focus on we look at the rituals that exist in medicine like changing into the gown and the rituals of the medical exam so we just kind of embraced whatever rituals would work and made that a part of life the way we coped with every sort of nonconforming behavior that alzheimer's brought out is we treated it like it was a superpower so when she'd say don't you see him he's right there instead of saying no he's not there i'd say i can't see him but you can cause you have special powers and that affirming of her reality kept her from getting agitated and so when i went to draw i knew i had to capture that and being able to fly is one of the coolest things that we all want to do and so alice was flying very very early in the story and i think the next drawing that came right after that was about her being ungrounded so only half of her showing and that's how i thought of alzheimer's disease it wasn't she was still here she was with us but she wasn't grounded the way the rest of us are she was kind of floating in a different world so those that then ended up kind of being a trope that's continued in the artwork and in the stories and and i guess it hearkens to the special power and that it's not just something to deny there's insights from the losses all belief systems have rituals and armenian belief systems i mean they're a very ancient christian nation the first nation to adopt christianity as a state religion back in three hundred and one and so that's a part of her upbringing and i felt like i wanted to honor that and really had the coolest experience circling back around that with her i mean she grew up in a religious family she completely rejected it so i did not grow up in a religious family i went off to sunday school with my methodist friends went to shul with my jewish friends to quaker summer camp to everything but during alzheimer's i thought it might be really nice to bring my mom to armenian church and you know sure enough we got there and she just kind of got into the service and standing up and down and and started kind of chanting along cause she had done this every sunday of her childhood so again the iconography it kind of came in subconsciously i didn't realize it the first time i drew a halo around her head but when i drew it i said oh my gosh that looks like an armenian manuscript and then maybe that stimulated me to start thinking about you know it might be helpful to bring her to church someday and sure enough after the service the priest came up to her and asked her what was her name and she didn't say alice she said which means dove in armenian and it's the name her parents gave her i was a professor so i was used to speaking to people but to speak about your artwork is different it's more intimate and i think the first gallery talk that i gave was at dianne shullenberger's gallery in jericho and at her delicious words series and it was lovely to be able to just directly connect with people and know how the artwork touched them and i had already read some of my writing there but that was the first time that i spoke about the artwork and since then you know i've been speaking at festivals the full circle festival in burlington i spoke at tedxyerevan last year back in armenia tedxbattenkill speaking at the international comics and medicine conferences and i mean actually been going all over i go to academic things and then more open to the public things and i have to say that when i'm at the academic things what i love is making it be more down to earth and rather than erudite because i think that that's the strength about aliceheimer's that i've written it in a way that i'm trying to really connect with people and that's what you're supposed to do in public things so when i am in a more formal setting i still try and make it very interactive and and make people talk to each other and make people think about things that are personal and people respond that we're all looking for opportunities to process these hard things like watching a loved one lose their memories completely and not recognize them and die and so i want this to be a venue for us to be able to embrace the positive and also find a way to cope with the loss so one book is done the first volume of it and it came out with an armenian publisher harvest published it last fall and it's available through phoenix books and also at grand isle art works and what i'm working on now is a second book that's going to be told in more classic comics form so the first volume it was a series of comics that then i went back into afterwards and wrote a series of vignettes just strictly words that were inspired by each one of the pictures this next book is gonna take the form of like maus or the fun home or persepolis just in straight graphic narrative form i'm gonna blend the story of alice and her memory loss and her armenian upbringing as an immigrant in new york city with going to armenia and talking to old people there and inevitably the first thing that anybody would say to me in armenia when i said my mother has dementia would be oh was she a genocide survivor so in their mindset it made complete sense that you would lose your memory if you were hiding traumatic memories you know things that were just too painful to remember biomedical models don't go there at all and so this is gonna be a chance to kind of integrate those two stories and talk about memory on lots and lots of different levels