"Woman:" "I'vealwaysfeltlike Idon'thaveit." "I've always known that I don't have it." "I will better serve the world if I don't have it." "And I know that's true." "I don't feel like any good can come from me having it." "I think it's more than a 50/50 percent chance somehow." "It doesn't seem like it's 50/50." "Even though that's the science." "It doesn't feel like that." "The doctor said that she had the envelope." "Last night she sent me an email saying she had the envelope." "And then I-- she said that I could come in and get the envelope anytime." "So that was really strange to have that news and... just know that it's sitting there." "So, yeah, it's gonna be tomorrow." "Yeah." "I'm not even nervous about the dinner." "I'm like, "Fuck making dinner for everyone."" "I'm just, like, nervous about my life." "I'm like... but that's why it's good that people are here and they're coming." "Everyone's wearing a plaid shirt." "It's 2013." "These are the shirts." " These are the man shirts." " Everyone, like, they thought, like, you guys are a fashion show." " How you doing?" " Good to see you." "Good to see you." "Um..." "Did anyone text you and say wear a plaid shirt?" "I got a 9." "Idon'tbelieveyou ." "Ooh,wow." "Showingit." "Fuck it." "Just fucking give it to me." " Whoa." " Fuck." "I just" " I just, like, can't even take this fucking moment." "Oh, Christian." "I'm so sorry." "Do you remember when I said I had double 2s and I really had it?" " Now I have double 6s." " Yeah." "You're lying." "Actually-- Yeah, liar." "All:" "Wow." "Man:" "Double 6." "I'mMariannaPalka, andI 'ma filmmaker." "We're here today, I suppose, because I've decided to get tested for Huntington's disease." "Gettinga positive resultis,like, thedeathsentence." "Andifyouget  theopposite, then just get to be like everyone else." "Man:" "I'veneverseenyou  losethisgame." "I know, because you've only seen me play once." "That'strue." "( all laugh )" "I remember being a child and feeling totally neglected because my mom and dad were so in love with each other." "Theywere,like, genuinelyinlove, like,allthetime." "Like,constantlytaking picturesofeachother, makingart foreachother, verymuch ina romanticstate, like,allthetime." "Theywouldwakeup likethat." "Theywouldgo to sleep likethat." "Wewereapart ofthatlittlebubble, andthenwhenIwas eight,mydadgot sick andeverything wassodifferent." "Havingtomoveaway fromhimandhim going intohospital." "It was paradise, and then hell." "Like, just, immediately." "So it was-- you're right, it was a kind of to some extent a fairy-tale life." "I mean, we happened-- we loved each other very much, and then once-- once the onset began, then he... because it does involve the mind, so he wasn't aware of his actions in a sense." "But as far as he was concerned, they were the correct actions, so very quickly, of course, the business went down." "And there was a bankruptcy." "It was actually not possible to continue living with him, because just-- violence got involved." "It was almost as if, you know, in picture form, it's as if a brick at a time-- each brick from the castle was just falling out, and now the castle was just caving in," "and none of us could hold it." "It was just..." "Yeah." "( both crying )" "Oh, jeez." "Marianna:" "Thetestbecameavailable inthe'90s." "Mydadhadalreadystarted showingsignsof it ." "So by that time, we already knew that he had it." "Basia:" "Iremembercomingout  oftheclinic, andwewere bothquiteemotional." "He said, "When it comes to that moment," "I'll just disappear."" "Did he mean he was gonna go away to a home, or that he was gonna kill himself?" "Uh..." "I think it was a gift of, you know, the promise of a gift of the family not having to suffer through..." "Of course it's... kind of a grand gesture, but, uh..." "As time went on, the person found themselves in the condition, and I don't know how much aware that person is, to make any decision like that." "Marianna:" "Whenmydad'smom started showingsignsof it , thatwas thefirsttimemymom heardoftheillness." "Basia:" "Soit'sthegrandma, hermother thathadthegenethat got passedonto her, butthefamily didn'teitherknow ordidn'ttalkaboutit." "Sothemotherhaving theHuntington's,of course, itwasa50/ 50 chanceforanychild, andtherewere fourchildren." "Marianna:" "Mydadwasthe oldest offour." "Andthreeof them haveit." "Subsequently, mysistergottested andmycousingot tested, andtheyboth haveit,also." "It'straumatizing foreveryone." "It'straumatizing foryourwholefamily." "And then some people are taken and some aren't." "And that's just ridiculous and horrible." " It's like a nightmare." " Yeah, it's just like chance, it's like Russian roulette almost." " It's like" " Yeah, you either... get the gene or you don't." "Hi." "They'vegone." "Oh ,no ." "Butwestill haveMr.Palka!" "Oh,no,he 'sgonetoo ." "Thisisterrible." "Marianna:" "Ilostmy dad." "He'salive, buthe'slike alivingghost." "Growingup, Iwasalwayslike, "Ijustdon'thaveit."" "Eventhoughthescience saysthechancesare 50/ 50." "I'vebeenhavingthese reallyeuphoricdreams, withthebirds andtheforest, surfingor scubadiving ordoingsomething innature." "AndthenI'llwakeup anditcomescrashing downonme ." " Do you want to start?" " No." " ( laughter )" " I'll start." "I'll start." "Since it's only fair." "Thank you so much, Marianna, for bringing us all together tonight for a huge moment for all of us." "Um, thank you." "Thank you so much for sharing this with us and for making this beautiful food and for having us be a part of your destiny, whichisso important toallof us ,thankyou ." "Thanks, Bryce." "Tomorrow is a big day, and tonight is a big night, and no matter what happens, we'll-- we'll all still be here tomorrow." "And we'll all still love each other as much as we love each other now, andyouhavea greatsupportgrouphere." "Thanks, Jason." "This moment is so crazy, it's so surreal for me, but I'm so happy that you guys are here, and I really love you guys, and I feel your support so deeply." "Each and every one of you." "And I don't think I could really do it without you guys." "Like, I couldn't have done this shit without each of you." "So thanks for being there for me." "So you don't feel, like, afraid at all right now?" "Rightnow I'mjustlike..." "Idon'tknow." "Ivacillate betweendenial" " and" " I love denial." "Denial is the best place to be." "It's a cool island." "Denial is like a tropical island where you're just, like, bathing in... salt water and, like, eating fish and coconut milk." "Um, so, yeah, I go from, like, denial to curiosity to frustration to impatience." "Like, I jump all around the map." "I think it's 'cause it's so devastating to the whole family that people just get, like, really quiet about it." "People get, like, shell-shocked about it." "Man:" "Butalsoit 'snotlike-- it'snotlikeAIDS orcancer orsomethingthat canaffectanyone ofus atanytime." "It's like if it's not in your family, if your mother or your father don't have it, then you know for a fact that you don't have it and you have no chance of having it." "Man:" "Imean,theway thatitwas describedtome , that first allowed me to, like, sort of hook into it, because it's such a crazy thing, is someone saying it's essentially Parkinson's plus Alzheimer's." "Marianna:" "Right, like you lose your body and your brain at the same time." "You have to have written, like, your will, and have a couple things in place before you do the test and stuff so... yeah." "Jason:" "Ithinkthateverybody who'smetyou, whetherthey'veknown aboutthisor not, hascomeawaysaying that's one of the most courageous people I've ever met." "Even if they don't know about this at all and how brave you're being in this, just with everything else." "Coming to New York with, like, 100 dollars in your pocket at 17." "Like, you are just a fucking survivor, brave" "I don't think you would ever let something as simple as fear stop you from doing anything." "Honestly." "I need, like, this whole napkin." "( all laughing )" "So..." "Cheers, everybody." "Okay, let's eat this shit." "Jason:" "MariannaandIwere togetherfor11 years, andnowwe 'revery goodfriends." "And, uh, it's probably my biggest fear... in my whole life is that Marianna um, has this and, um... and, you know, so-- so there-- there always will be a scared part of me that's" "watching her face for ticks or-- or watching her behavior for odd things and" "and then, you know, and then I" "I forget about it and I don't do that, but, um..." "You know, it's-- it's-- it's definitely, like-- it's a scary thing." " ( laughs )" " But she doesn't." "She doesn't have any of those things." " Right now say it?" " Well, just what is it?" " It's a Bob" " It's a Bob Dylan poem that Bob Dylan wrote for Woody Guthrie when he... died." "Woody Guthrie died from Huntington's disease, and Bob Dylan was, um... enamored and taken by his work, and he went to, like, say something at his funeral, at the memorial service, and they asked him to write" "a little paragraph, and he came up with five pages." "Man:" "Andhewentuptosee himinhishospital." "He went to see him in hospital before he died." "Man:" "Prettycloseto theend ." ""If the wind has you sideways" "With one hand holding on" "And the other starts slipping" "And the feeling is gone" "Oryoursidewalk startscurling or your street gets too long" "Or you start walking backwards though you know that it's wrong" "Or lonesome comes up as down goes the day" "And tomorrow's morning seems so far away" "Andyoufeel thereinsfromyourpony  areslipping" "Becauseyourrope isa-sliding" "And your hands are dripping" "Andyoursun-deckeddeserts andevergreenvalleys" "Turntobroken-downslums andtrash-canalleys" "Andyourskycrieswater oryour drainpipe'sarepouring" "Becausethelightning isa-flashing andthethunder's a-crashing" "Andthewindowsare  rattlingandbreaking andtherooftops areshaking" "Andyourwholeworld's a-slammingandbanging" "Oryourminutesofsun turntohoursofstorm" "Andtellyourself yousometimessay," ""Ineverknewitwas gonnabethisway" "Whydidn'ttheytellme thedayIwas born?"" "And you start getting chills and you're jumping from sweat" "And you're looking for something you ain't quite found yet" "Andyou'reknee-deep inthedarkwaterwith  yourhandsin theair" "Andthewholeworld iswatchingwithawindow peekstare" "Andyourgoodgal leaves she'slonggonea-flying" "Andyourheart feelssicklikefish whenthey'refrying" "Andyourbell isbangingloudlybut you  can'thearitsbeat" "Andyouthinkmaybe yourearshavebeenhurt" "Oryoureyes haveturnedswimmy fromthesight-blindingdirt" "Andthere's somethingonyourmind thatyououghtbesaying" "Thatsomebodysomeplace oughtabehearing" "Butit'strapped onyourtongueand sealed inyourhead" "Anditbothersyou badly whenyou'relayinginbed" "Andnomatter howyoutryyou just can'tsayit" "Andyou'rescaredtoyour soul  youjustmightforgetit" "And the lion's mouth opens and you're staring at his teeth" "And his jaw starts closing with you underneath" "And you're trapped on your belly with your hands tied behind" "And you wish you'd never taken that last detour sign" "And you say to yourself just what am I doing" "On this road I'm walking, on this trail I'm turning" "On this path where I'm strolling, in the space I'm taking" "Andinthisair  I'minhaling" "Andthewordsthat I'mthinking" "Andthewordsthat I'mwriting" "Inthisoceanofhours I'mallthetimedrinking" "WhoamIhelping, whatamItaking" "WhatamIgiving, whatamIbreaking" "Butyoutrywithyour  wholesoulbest" "Nevertothink thosethoughts, nevertolet thosekindof thoughts gainground" "Ormakeyourheartpound" "Becausesometimesyou hearthemwhenthe nighttimes comecreeping" "Andyoufearthatthey  mightcatchyousleeping" "Andyouwakefromyour bed,  in the last hour of dreaming" "And you can't remember for the best of your thinking" "If that was you in the dream that was screaming" "And you know it's something special you're needing" "Andyouknowthere'snodrug that'lldoforthe healing" "Andnoliquorintheland tostopyourbrain frombleeding" "You'll find God in the church of your choice" "And you'll find Woody Guthrie in Brooklyn State Hospital" "And though it's only my opinion" "I might be right or wrong" "But you'll find them both in the Grand Canyon at sundown"" " Okay, thank you, guys, for coming." " Of course." " We're gonna wait in there for, like, another" " Two hours." "She's gonna be like-- she's gonna be like, "Yeah, we'll see you in 20 minutes."" "So how are you feeling right now?" "I just don't know what it's going to be like." "If I have a gene that's positive, then that means I have a number of repeats, and then the more repeats I have, like, the faster the onset is." "Bryce:" "And if the results arenegative,thenit'sjust-- youjustwalkaway?" "There's,like,nothing?" "If the results are negative, then we all just go..." " to a strip club." " ( all laugh )" "We just go home, we just go home and we're like-- that's what so crazy about it, is it's not like, oh, the result is positive." "The result is negative." "It's not-- those are two such different..." " Realities." " Yeah." "It's, like, this road or that road." "There's no middle." "Hi..." " How are you?" " Doctor:" "Good, so good to see you again." "Yeah, it's so good to see you." " Can I bring my friends?" " Doctor:" "Oh, sure." "Okay, and also, Dr. Perlman, we have a camera because we're filming, is that okay?" " Doctor:" "It's okay." " Okay." " Doctor:" "Hi." "Very good, come." " Okay." " We're gonna go to our same room." " Marianna:" "Okay." "Some of you guys may have to perch somewhere." " Okay." " All right." "It's just through here." " Hi." " Hi." "Bryce:" "Wheredoyouwant metosit?" "Here, and you guys can be here or wherever." "Ithinkyoumentionedyou were having a get-together at yourhomelastnight." "Howdidthatgo?" " Girl:" "It was amazing." " It was good." "It wasn't really a party, but it was... funinitsown way ." "So..." "I have the only printed copy" " of your results." " Okay." "It's confidential." "It is not in any system." "It's yours to use as you need to, and it did show the mutation." "So you do have the defective gene, the Huntington's disease, the mutation." "Okay." "So we should give this to you." "Weshoulddiscuss whatyou'regoingtodonow withthisnewinformation, andthenIpulledup someresourcesforyou ..." "Okay." "...thatI think you'llfindhelpful." "Shit... shit." "( crying )" "Um, okay." "So I'm gonna-- yeah." "The average person with your mutation is probably going to notice some problems in their late 30s, 40s." "So there's a range." " How old are you now?" " 32." "This year." " So we could go another 10 years..." " Yeah." " with no symptoms..." " Nothing." "...nothingthatyou wouldhaveto dealwith" " in that regard." " Okay." "Inyourfamily, whathasbeenthe  patternofsymptomonset?" "My dad was, like, 33, my cousins have not been able to be-- they haven't, um, my cousin and my sister have-- they're both pre-symptomatic..." " And they're how old now?" " ...and they're in their 30s." " Okay." " Yeah." "Well, I think" "I would love to take some time and, um, you know... to, like, process." "It could be 39, that's what that means." "It could be between-- it could be, like, late 30s or it could be 50s." "Oh, my God." " Bryce:" "Knowing you, Marianna..." " Girl:" "Yeah." " Bryce: it could be never." "It could be never." " Marianna:" "It could be never." "Marianna:" "( crying ) It could be never, I know." "It could be never." "Bryce:" "I didn't want this for you." " Marianna:" "I know" " Bryce:" "I didn't want this for you." "Marianna:" "( crying )" "Bryce:" "But you're going to fight so hard." "You're gonna fight and you're gonna create that legacy, okay?" "Both:" "( crying )" " You are, you are, you really are." " ( crying )" "Okay." "Thank God you guys were in there." "Thank God." "It was so good that it was you two." "Didn't you think she was gonna wait to open the envelope?" " Girl:" "Yes." " Bryce:" "Yeah, I did." "Itwasreallysurprising." "Ididn'tquiteknowwhat  itmeantat first." "Marianna:" "Atthevery,veryleast, it's, like, ten-- ten, well-- atthevery,veryleast, it's,like,eight,nine, soattheveryleast, it's, like, seven years away." "¶Singingayeaye  yippee,aye¶" "¶ Singing aye aye yippee, aye ¶" "Bryce:" ""Huntington'sdisease isa neurodegenerative geneticdisorder." "Theearlysymptoms areoftensubtleproblems with mood or cognition."" "That's what's so crazy about it." "Because it's like, "Is this a symptom, or am I just having a rough day?"" "You know, like, you don't-- "Oh, my God."" "I mean, they're talking about that they eventually would need a feeding tube, because they'll choke on their food." ""As the disease advances, uncoordinated jerky body movements become more apparent along with decline in mental abilities and behavioral--"" "( crying )" "She just" " She has the most incredible mind..." " Girl:" "I know." "( crying ) of anyone that I know." "So,um..." "So ,yeah, thenpsychiatricissues and, yeah, it's basically-- it goes into dementia." "I just wanted to know what my life was." "Like, I needed to know." "And whatever-- whatever it was going to be, this morning I said," ""That's going to be beautiful."" "And I'll serve that." "I'll serve that life, I'll serve this life." "I spent so much time not wanting it... that... now that I know that I have it," "I don't know..." "It's just-- it's shocking, but it's also not obviously a surprise." "And I grew up with my cousin and my sister, and we all had the same-- we shared the same dresses when we were kids." "And we did everything together, and there's something about... not-- not having it." "There's something about having it with them, that three of us have it." "I mean... it's like the dream is dead, and there's a new dream." "That's all." "Um..." "And everyone-- you know everyone has a demise." "Everyone faces demise, every single one of us." "So we're all together in that as human beings, I guess."