I'm Really Going to Miss Me

<v Narrator>In the next hour, we'll explore the thoughts and feelings of four people <v Narrator>who have been told they are going to die. <v Narrator>We'll see how they react to those terrifying words and what life is really like <v Narrator>for those who don't have long to live. <v Narrator>It's hard to think about dying, to hear someone talk about it, to see it. <v Narrator>No matter how much has been written or said about death, it's a word that rattles the <v Narrator>core of our being because it's something we must ultimately face alone. <v Man>From the moment we are stricken with a terminal illness, many of us will feel a crushing <v Man>sense of isolation. <v Man>We become grim reminders that all humans are mortal. <v Man>We may be treated as if we're ghosts spoken about as if we're not in the room,

<v Man>friends may turn their backs on us, strangers may avoid us. <v Man>Yet when we are about to die, we desperately want to talk, <v Man>if only someone would listen. <v Man>Those who do listen find that everyone faces death differently. <v Man>There is no right or wrong way to do it. <v Man>It's as if dying is life's last great improvisation. <v Mother>She walked, she talked, um she fed herself at the table, <v Mother>she had manners, she was silly, and she <v Mother>loved to watch Winnie the Pooh. <v Mother>So when she couldn't function or do those things <v Mother>that she was used to doing, she became <v Mother>like desperate. <v Mother>She'd walk maybe a foot and then she'd collapsed to the ground and <v Mother>she'd get so frustrated and try to um stand

<v Mother>up that her knees would start buckling underneath her and she'd collapse to the ground <v Mother>again, and she'd get so upset that she'd start dragging herself across the <v Mother>room and. <v Mother>I didn't like to see my daughter dragging across the floor. <v Mother>I didn't like to see her hurt um. <v Mother>No, I didn't like to see her in pain. <v Narrator>The death of a child is a great tragedy. <v Narrator>But Monica Arameo faces something even worse [Indistinct conversation from Monica]. <v Narrator>It began on a day of great joy when she gave birth to a healthy baby girl <v Narrator>named Chennelle. <v Narrator>Monica's joy turned to terror when her older daughter Rochelle came to visit <v Narrator>at the hospital. One moment, two year old Rochelle was bouncing a toy <v Narrator>on her mother's bed, the next, she was lying by her father's feet,

<v Narrator>she had turned blue. <v Monica Arameo>I-I mustered up the strength to tell him that something was wrong with her face. <v Monica Arameo>And he laid her on the bed and she was having a seizure <v Monica Arameo>and she was foaming at the mouth and he <v Monica Arameo>just-he screamed, we both scream, I think, oh my God, something's <v Monica Arameo>wrong. <v Narrator>Within a month's time, Rochelle was having hundreds of small seizures a day. <v Narrator>Baffling symptoms such as slurred speech and clumsiness appeared. <v Narrator>After months of medical tests, the Arameos were told that Rochelle had something called <v Narrator>Batten's disease. <v Narrator>She would slowly degenerate and die, nothing could be done to save her. <v Monica Arameo>My heart just felt like someone just <v Monica Arameo>took a dagger and stabbed it right in the center of my heart. <v Narrator>For years, Chennelle watched her older sister suffer. <v Narrator>Finally, the time came to say goodbye.

<v Narrator>Rochelle could no longer cling to life, and Chennelle became an only <v Narrator>child. <v Monica Arameo>Doctors told me that Chennelle was normal. <v Monica Arameo>I mean, we had her tested to make sure and they told me that <v Monica Arameo>it would be like two stars colliding in the universe that I would ever have two children <v Monica Arameo>that would have the same terminal condition. <v Narrator>But the unthinkable did happen. <v Monica Arameo>She's stiff today. <v Narrator>Monica can still picture Chennelle's face when she had her first seizures. <v Monica Arameo>?Yea?, she works out every day here. <v Monica Arameo>You can see the terror in her eyes. <v Monica Arameo>And she was crying and holding, just grabbing onto me and shaking <v Monica Arameo>and whimpering, and I called Bob over

<v Monica Arameo>to me and we just stood over her. <v Monica Arameo>And I was talking very calmly to her and soothing her with my voice, <v Monica Arameo>and I just picked her up into my arms when she was done, and I held her next to <v Monica Arameo>my bosom. And then I knew, I knew that <v Monica Arameo>inside my heart that my daughter was going to die. <v Bob Arameo>And so this is gourmet food Chennelle. <v Narrator>Chennelle is following the exact blueprint of her sister's illness. <v Narrator>Rochelle died at 7, Chennelle is now 6, and will remain <v Narrator>in a children's hospital until her death. <v Bob Arameo>I think just a couple more bites, she's done, she don't want no more. <v Narrator>When Chennelle could no longer feed herself, Bob felt as helpless as his daughter. <v Monica Arameo>In just a minute, come on one more ?inaudible?. <v Bob Arameo>They can't get their hand to their mouth, and they have this frightened look. <v Bob Arameo>And the parent has that frightened look too like, what do you tell your child <v Bob Arameo>when their eyes are like that?

<v Bob Arameo>So missed. So wondering about is this-is this supposed to happen, dad <v Bob Arameo>or mom? Is this what life is about? <v Bob Arameo>We made it! Boy, a big truck <v Bob Arameo>was that, he stopped for you though, because you pushed the button. <v Bob Arameo>Let's go over here and look at the pretty trees and the pretty flowers. <v Bob Arameo>You smell them? <v Bob Arameo>They say goodbye to themselves and then they start to realize they're <v Bob Arameo>still here. And then their real character <v Bob Arameo>comes out and what they are, it really starts to become magnified. <v Bob Arameo>And every little pulse or every little squeeze of their hand, that's their <v Bob Arameo>new language. <v Bob Arameo>Right here, see? These the little ones, that is a little flower. <v Bob Arameo>You wanna hold it, you wanna hold the little flower? <v Bob Arameo>[Conversation between Bob and Chennelle becomes indistinct] And as if you're close to your child <v Bob Arameo>and spend time with them you learn that language and it's unspoken, but <v Bob Arameo>it's-it's very, very vivid and colorful.

<v Bob Arameo>And life is very special that way. <v Bob Arameo>Yeah, let's go. <v Monica Arameo>You couldn't part her finger for mine if you tried. <v Monica Arameo>She holds on to me with every ounce of strength that she has <v Monica Arameo>and she throws me kisses and. <v Monica Arameo>She coos like [Monica makes a "wooo" sound] mom, <v Monica Arameo>she calls me mom. <v Bob Arameo>Yes, good. <v Bob Arameo>Look at that yawn. <v Narrator>Any small sound that Chennelle makes has a special meeting to Monica and Bob. <v Narrator>They understand if she is afraid, angry or in pain. <v Bob Arameo>I try to teach for her ABCs, 123s, and as <v Bob Arameo>we do things, but not too much. <v Bob Arameo>And she probably knows more than she probably in her mind thinking, <v Bob Arameo>"Dad I learned that stuff a long time ago." You know, "Dad, I wish

<v Bob Arameo>you'd quit with the jokes already. I've heard that one a million times." All relaxed? <v Narrator>Bob struggles to help Chennelle do all that she can, but he knows when to stop <v Narrator>pushing. <v Monica Arameo>And on that mouse, there is a flea. <v Monica Arameo>Can it be, a ?grateful? flea? <v Bob Arameo>We wanted to do better, but we're not expecting it. <v Bob Arameo>So we're always giving them the best positive in that way, even <v Bob Arameo>though we're allowing them to go negatively, and peacefully, slowly, <v Bob Arameo>but not letting them go so fast. <v Bob Arameo>Because we love them so much. <v Monica Arameo>And then napping house where no one is sleeping now. <v Monica Arameo>Yay, all done, all done, all done. <v Narrator>As Chennelle drifts further and further away, it might seem that she is already

<v Narrator>out of reach, but Monica and Bob say they learned a tremendous lesson from <v Narrator>sister Rochelle late in her illness because Rochelle was <v Narrator>unresponsive toward the end, Monica doubted that her daughter understood anything <v Narrator>and spoke about death in adult terms in her presence. <v Monica Arameo>It was almost cold, and I didn't-I didn't do it on purpose. <v Monica Arameo>It's just that I didn't think that she understood <v Monica Arameo>me, and later I found <v Monica Arameo>that she did. <v Monica Arameo>I-I knew that she understood when she died, <v Monica Arameo>because um a week before she died, <v Monica Arameo>she called out for her daddy and <v Monica Arameo>she called out for me, and <v Monica Arameo>she held her hands real tight and she cried.

<v Monica Arameo>[Doglike noises], a doggy Chennelle, aww <v Monica Arameo>a doggy. <v Narrator>Chennelle has been told about her death in simple childlike terms. <v Monica Arameo>Things like when-when she goes to sleep, <v Monica Arameo>she'll feel a lot better that all the pain will be gone away. <v Monica Arameo>Give 'em a big squeeze. And that we should be able to run <v Monica Arameo>and play ?inaudible?, and they'll go flying the <v Monica Arameo>kites and they can sing and they can play <v Monica Arameo>with the doggies in case we tell her things like that. <v Monica Arameo>It may not be true, but I expressed to her that, <v Monica Arameo>that she was very sick, just like Sissy, and that um <v Monica Arameo>Mommy would always be there and always love you, and <v Monica Arameo>that Daddy would always be there too. <v Monica Arameo>No matter what, we'd always be there, no matter what.

<v Narrator>Although Monica and Bob are always there for Chennelle, they tried to support each <v Narrator>other throughout the ordeal of their daughter's death. <v Narrator>They are no longer married. <v Narrator>I never thought I'd be without my children and someday my children's children, says <v Narrator>Monica, and now it's going to be just me, just <v Narrator>me. <v Monica Arameo>I'm the lucky dog, that's what I used to tell Chennelle. <v Monica Arameo>I'm a lucky dog, I'm a lucky dog, she thought I was nuts. <v Monica Arameo>[Laughter] <v Monica Arameo>I did crazy things, I did crazy <v Monica Arameo>things to make her laugh, I did. <v Narrator>In the house where her daughters played and laughed. <v Narrator>Now there are only memories. <v Monica Arameo>Those are Rochelle's horses. <v Monica Arameo>See all the colors?

<v Monica Arameo>She loved color. <v Narrator>Each piece of art once carried proudly home is a season remembered. <v Monica Arameo>Halloween picture. <v Narrator>On a shelf sitting near well-loved toys is a blue urn which holds <v Narrator>Rochelle's ashes. <v Monica Arameo>Well, I have rashes because I felt that it was so <v Monica Arameo>cold to just go and spread her ashes over the ocean ?out? <v Monica Arameo>near over the mountain tops when it wasn't over yet. <v Monica Arameo>And when it's over in my mind is when Chennelle's gone <v Monica Arameo>and when she's gone, I'll probably open up the urn and have them clear Atchison <v Monica Arameo>in it with her sister so that I kept my promise and they were together, <v Monica Arameo>so that they'd be together forever. <v Monica Arameo>Here it comes Chennelle, ?come and see? <v Monica Arameo>?inaudible? ?Come and see. <v Narrator>The end is not too far away for Chennelle.

<v Narrator>She needs her parents' strength to help her now more than ever as they move <v Narrator>as one toward her death. <v Monica Arameo> Even though she has her um moments <v Monica Arameo>of weakness, she-she knows I'm there yet she knows <v Monica Arameo>her dad is there because she can't see anymore, <v Monica Arameo>but she feels our presence. <v Monica Arameo>She feels the warmth of our body next to her. <v Monica Arameo>[Monica singing to Chennelle] She-she <v Monica Arameo>loves us in a special way. <v Monica Arameo>[Singing] I wish I could be part of that world. <v Monica Arameo>We don't express sadness because we don't want her to think <v Monica Arameo>that it's something to fear because <v Monica Arameo>it really isn't anything to fear. <v Monica Arameo>It's not a fearful thing, it's only fearful if we let it be that way. <v Monica Arameo>[Singing continues]

<v Monica Arameo>Wish I <v Monica Arameo>could be part of your world.[Singing ends] <v Jeff Swinerton>Intellectually, I know what they're telling me, that this is terminal, and there is no <v Jeff Swinerton>coming back from it, there's just nothing there. <v Jeff Swinerton>In my heart of hearts I refuse to believe that. <v Jeff Swinerton>If in fact, I'm wrong and they are right. <v Jeff Swinerton>I don't want to waste the time between now and then worrying about it. <v Jeff Swinerton>It's there, it's a fact of life. It's something like having red hair or a limp or <v Jeff Swinerton>something. It's just something you deal with.

<v Jeff Swinerton>That's what I'm good at. [Laughter] That's what I'm good at. <v Jeff Swinerton>Music? No, I don't have any. <v Narrator>Several years ago, Jeff Swinerton, 42, found he had incurable lymphatic <v Narrator>cancer. In his war with the inevitable, he lobs humor at the enemy. <v Jeff Swinerton>This is actually from the manuscripts of the late Wilhelm Ferdinand Schwarzkopf who was a <v Jeff Swinerton>large person, he had a small following. <v Jeff Swinerton>Yeah, I was class clown in high school, voted Mr. Humorous. <v Jeff Swinerton>I enjoy laughing and my mind just kind of runs on this <v Jeff Swinerton>punch line patter all the time and it just that ?dun-dun? <v Jeff Swinerton>[Indistinct conversation]. <v Narrator>Susan Winterton says she married Jeff because he could joke about anything. <v Narrator>He's still trying [Indistinct conversation]. <v Jeff Swinerton>Sickness is not funny. Up yours! <v Jeff Swinerton>The hell you know? You sick?

<v Jeff Swinerton>That's a rather broad statement. Sickness isn't funny, if sickness isn't funny then. <v Susan Swinerton>Well... <v Jeff Swinerton>It is! And if you can't laugh at it. <v Jeff Swinerton>And then I don't know. <v Jeff Swinerton>It just. And I have no argument about the breast implant thing, nor the argument with <v Jeff Swinerton>Jay Leno being funny, which sometimes he is. <v Jeff Swinerton>But since he's now got a full time job and <v Jeff Swinerton>by having people making remarks about jokes and being sick saying, well, oh, <v Jeff Swinerton>I think it's a statement and I'll write him a jok-I'll write him a letter and [Susan <v Jeff Swinerton>says, "Well, yeah"] saying that. <v Jeff Swinerton>Who's to he to know, is he sick? [Susan says "Yeah."] <v Jeff Swinerton>Sickness is funny. <v Susan Swinerton>[Susan laughs] It makes a lot of funny effects. [She chuckles] <v Jeff Swinerton>Ask people in a support group, people with cancer have toilet brush bowls next to <v Jeff Swinerton>their toilet. So when they're throwing up and they can in between-in between <v Jeff Swinerton>hurling, they can scrub. <v Jeff Swinerton>So people with cancer have the cleanest toilets in the world, but that's funny. <v Jeff Swinerton>[Indistinct question] <v Jeff Swinerton>And it's sickness and you're wrong, you pompous little ?snit?. <v Jeff Swinerton>Yeah, those are my rats.

<v Narrator>Four years ago, the Swinerton's van, which Jeff calls the Ratmobile, <v Narrator>took him on a trip to California to interview for a new job. <v Narrator>He dropped by a clinic to get some pills for a sore throat, the doctor did a biopsy <v Narrator>and his life changed forever. <v Jeff Swinerton>The dead rat in the front or the one who has been maimed here by the bus, by pulling out <v Jeff Swinerton>in front of traffic has as 89 as its number. <v Jeff Swinerton>89 being the year that wasn't the best. <v Jeff Swinerton>That was the year that I found out that uh I wasn't just me anymore. <v Jeff Swinerton>Yep, that was a fun trip to California. <v Jeff Swinerton>No, you're not going to make a lot of money, you're going to die. <v Jeff Swinerton>The van's a little like me. It's-it's got a nice, strong heart, but it-just a little <v Jeff Swinerton>cancer on the edges. So it's-other than that, it's in pretty good shape. <v Doctor>Have you noticed any change in your lymph nodes? <v Jeff Swinerton>Susan was pointing out there was one of the size of a golf ball ?on my knee?. <v Doctor>You got two little ones here, which I think actually are even <v Doctor>smaller than they were last time you know. <v Jeff Swinerton>I think it's just gone right now versus just pain, I'm-I'm-this is a new experience

<v Jeff Swinerton>for me, the pain part. <v Jeff Swinerton>[Conversation becomes indistinct] I whine sometimes about the fact that my whole life now <v Jeff Swinerton>has become a treatment or leading up to a treatment, and instead <v Jeff Swinerton>of having this done in the conventional method at the hospital, most of this stuff is <v Jeff Swinerton>self-administered. So I'm forever mixing something or sticking something in <v Jeff Swinerton>some hole in me somewhere that has to be pumped in or dropped <v Jeff Swinerton>in or drizzled in or whatever. <v Doctor>Here? <v Jeff Swinerton>Some are tender though no more than usual. <v TV>43 to 39, [Indistinct dialogue from TV]. <v Jeff Swinerton>Bad days are crap. <v Jeff Swinerton>There are some spells that go through and I'm going through one right now. <v Jeff Swinerton>That they're just kind of creaking and feeling old and bent <v Jeff Swinerton>and not very energetic and-and sore in all my joints. <v Jeff Swinerton>I really try not to spread too much of that. <v Jeff Swinerton>Yes! <v Susan Swinerton>See, there ya go. <v Jeff Swinerton>I've always associated that with um old people. <v Jeff Swinerton>[imitates old man] Today I feel like I'm old, and bent, and twisted,

<v Jeff Swinerton>and hurt. My stool was running this morning, and <v Jeff Swinerton>my legs wouldn't stay down, and [end imitation] I don't want to be old and <v Jeff Swinerton>or [imitation starts again] I feel it sometimes. <v Jeff Swinerton>[end imitation] <v Susan Swinerton>About a quarter pound of provolone. <v Narrator>Jeff sees Susan as a woman of unbounding strength, he admits he couldn't make <v Narrator>it without her. She knows how to calm his fears. <v Jeff Swinerton>Just being there, just being my pal and my wife, [Indistinct conversation] I'm lucky <v Jeff Swinerton>enough to say that my wife is also my best friend so um <v Jeff Swinerton>we'll talk about something else, we've talked about that. <v Jeff Swinerton>Or maybe just hold each other or maybe it's just getting <v Jeff Swinerton>dinner made or, you know, somebody to scratch <v Jeff Swinerton>your back for a minute or whatever. <v Jeff Swinerton>And I try to be a sounding board for her, in fact, for I think I was pushing her too-too <v Jeff Swinerton>much, too early about, don't you feel this?

<v Jeff Swinerton>Don't you feel this? Don't you feel this? <v Jeff Swinerton>Aren't you bothered by this? And she has been a rock, a total Rock <v Jeff Swinerton>of Gibraltar by me. <v Susan Swinerton>We used to dream a lot, I don't think I do that. <v Susan Swinerton>I think I purposely stopped myself, and I just pretty much look at it day to day. <v Susan Swinerton>I mean, to a point, yes, I look into the future, but I pretty much stay day to day now. <v Susan Swinerton>It's easier for me to ?inaudible? that way. <v Susan Swinerton>Bye. <v Jeff Swinerton>See ya later, ?sell much?. <v Susan Swinerton>Push off that reality, just take it one day at a time, so <v Susan Swinerton>that's OK with me. <v Narrator>Susan has adjusted to being the breadwinner, working in a fast food restaurant. <v Narrator>Jeff has adjusted to living life without deadlines. <v Narrator>This gives him more time with his 10 year old daughter, Casey. <v Narrator>When Casey first found out about the cancer, she would cry whenever Jeff <v Narrator>left town for treatment.

<v Casey Swinerton>You died right there. <v Narrator>Sometimes she would disappear into the basement to be alone with her thoughts. <v Jeff Swinerton>One time we have a electric train set down there and she was staging little funerals with <v Jeff Swinerton>those little tiny people out there. <v Jeff Swinerton>Only the funerals were not funerals. Sometimes it would be just them laying next to the <v Jeff Swinerton>tracks and everybody standing around like there'd been an accident. <v Jeff Swinerton>So she went through a little little morbid psychodramas with toys, <v Jeff Swinerton>I guess for a while. But she seems pretty well adjusted to it. <v Jeff Swinerton>We haven't tried to hide it away from her to keep it away, but because Casey is part of <v Jeff Swinerton>the family and she has every right to know and in fact, I don't want her thinking again <v Jeff Swinerton>that it was her fault or that she had anything to do with it in any way. <v Jeff Swinerton>But it's-it's a fact of life. <v Narrator>Casey is a gifted child who loves to learn. <v Narrator>Like her dad, she has a passion for baseball cards and good books. <v Narrator>He says he wants to be remembered as someone she could rely on, someone who

<v Narrator>shared her interests and returned her affection. <v Narrator>Someone above all, who was fun to be around. <v Jeff Swinerton>Think the stockbroker's all paranoid because I'm back here with the camera again. <v Jeff Swinerton>I don't wear a watch anymore, and I don't have a daytimer, and I don't have a credit card <v Jeff Swinerton>anymore. I don't have appointments to go to. <v Jeff Swinerton>Argo, who is that man down there with the camera? <v Jeff Swinerton>I use to dress like this everyday. <v Narrator>Jeff doesn't miss his old job as a furniture company executive. <v Jeff Swinerton>That is a cool looking church. <v Narrator>Now he'd rather play tourist in his own town, taking photographs of things he has looked <v Narrator>at all his life, but has never really seen. <v Narrator>Free time also leads to thinking about what has gone before, regrets <v Narrator>about not knowing his father well, and sadness about paths not taken. <v Jeff Swinerton>I also think the other thing that I would change if I had anything to change is

<v Jeff Swinerton>I wouldn't have lost a lot of the ideals I had when I was, back in the 60s. <v Jeff Swinerton>Boy, that was the idealism of youth. <v Jeff Swinerton>God, the 80s were such crap and all that yippieness that went through, I'm sorry I was <v Jeff Swinerton>part of it. I'm ashamed that I got that deep involved in my gold American Express card. <v Jeff Swinerton>Oh, give it to me, give it to me, give it to me, give it to me. <v Jeff Swinerton>Give it to me. It's not there. [Indistinct dialogue] <v Narrator>Good friends helped to pass the time. <v Narrator>Illness, says Jeff, is something like a tattoo that you wear on the inside of your shirt. <v Narrator>Some people won't like to look at it. <v Narrator>He recalls what happened when he told one friend he'd known since grade school that he <v Narrator>was going to die. <v Jeff Swinerton>I haven't been able to find him since, we had one talk in a snowstorm one day and <v Jeff Swinerton>up at his house and he was gonna call me back and he since moved and I don't know

<v Jeff Swinerton>the number and I guess it was just too big a burden. <v Jeff Swinerton>And to him, I apologize, I didn't mean to drop anything on him too heavy. <v Jeff Swinerton>But yeah, some people can deal with it, and some people just can't for any number of <v Jeff Swinerton>reasons. <v Jeff Swinerton>Casey, would you like me to say grace or would you like to? <v Casey Swinerton>Mmmhmm. <v Jeff Swinerton>Tell her thank you-. <v Narrator>Jeff knows his family and friends can only go so far on his journey with <v Narrator>him. <v Jeff Swinerton>Thank you so much for all the-. <v Narrator>He's the one who must be ready when the time comes. <v Jeff Swinerton>In your name, we pray. <v Jeff Swinerton>There are many things that I fear. <v Jeff Swinerton>Dying if I die, I die. I'm going to die sooner or later. <v Jeff Swinerton>So if I die sooner then I die sooner, I'll just have a better looking uh James <v Jeff Swinerton>Dean, I'll have a better looking corpse when I go. <v TV>Call a foul on Terry Porter coming across- <v Jeff Swinerton>How many times have you seen the-the action film where the guy takes the car at <v Jeff Swinerton>full speed right off the end of the damn pier? Cool.

<v Jeff Swinerton>What a way to go. You run your life at full speed right to the last minute, as long as <v Jeff Swinerton>you get it where it's got to go. <v Jeff Swinerton>[Indistinct annoucement on TV] <v Jeff Swinerton>When I'm gone just fold me up behind the dumpster somewhere and I'll get picked up on <v Jeff Swinerton>Tuesday with the rest of the stuff that goes out. <v Narrator>Jeff sometimes pictures the small gathering he wants after he dies. <v Narrator>He plans to wear sunglasses in his coffin and write a eulogy that will make people <v Narrator>laugh. <v Jeff Swinerton>I like to be there, too. <v Jeff Swinerton>And if anybody's coming, it's a party. <v Jeff Swinerton>It will be a while before this damn thing happens, but if you want to come no sadness, <v Jeff Swinerton>it's going to be a party. Enjoy yourself, dress casually, park on the lawn <v Jeff Swinerton>if you want to, that's alright, bring a casserole that's fine. <v Jeff Swinerton>OK, I can deal with that, but uh no tears and stuff. <v Jeff Swinerton>Enjoy yourself. <v Jeff Swinerton>Top ten positive things about terminal cancer. <v Jeff Swinerton>Number 10, the ability to laugh at surgeon general's warning.

<v Jeff Swinerton>Number 9, save big bucks at the dentist by insisting on temporary fillings and caps. <v Jeff Swinerton>8, your bill collector threats no longer taken seriously. <v Narrator>Despite the odds, Jeff keeps opening his eyes to find another day. <v Narrator>He says it's like winning at the table where you're gambling with free money. <v Narrator>Every sunrise is on the house. <v Jeff Swinerton>Number 2, painkillers, painkillers, painkillers, and the number 1 <v Jeff Swinerton>most positive thing about having terminal cancer, you don't have to waste a lot of time <v Jeff Swinerton>on long term goals. <v Man>It's very, very debilitating. <v Man>You can't-you have absolute no energy. <v Man>You can't breathe very well, you'll have to be on oxygen and takes <v Man>weeks and weeks to recover. <v Man>So I said it in the student nurse at one point in time and um

<v Man>she wanted me to breathe deeply. <v Man>You know, hold the stethoscope in my back or whatever. <v Man>And I gave her a couple of breaths and she wanted more. <v Man>And I'm like, lady, I can't-I can barely breath let alone give you a deep breath. <v Man>You know, half a dozen deep breaths. <v Man>And then she-when she was finished, she came around in front of me and she was tearing, <v Man>her eyes, and she said, you're my first patient with AIDS <v Man>and I want you to know what a privilege I think it is. <v Man>And I-totally out of character for me, I said to her, well, it's not a fucking privilege <v Man>to have the disease. <v Narrator>For nearly nine years, Holstar knew that the terrible moment would come <v Narrator>when his HIV infection would turn into full blown AIDS. <v Narrator>When he had no symptoms it was easier to shove reality aside, <v Narrator>but suddenly his emotions no longer had a safe haven.

<v Narrator>He was lying in the hospital with his first symptom, pneumonia. <v Paul Holstar>One of the things I did in the hospital was I went back over my life. <v Paul Holstar>And I felt so defeated, and it made me feel <v Paul Holstar>that-that everything had been a defeat. <v Paul Holstar>All these things that I had committed myself to wholeheartedly, <v Paul Holstar>that seems to have fallen apart and failed, and this was just another one. <v Paul Holstar>So I was really, really kind of doubting myself, my life had been a waste of time. <v Narrator>The closer that Holstar comes to death, the more his life turns in <v Narrator>his mind like a familiar touchstone. <v Narrator>He says he needs to reaffirm its value, its finer moments, its lessons, <v Narrator>even its pain, trying to come to terms with where he has been. <v Narrator>Paul is looking for the strength to face his brief future, which will end

<v Narrator>in a hideous death. <v Paul Holstar>I want to be here, but I don't want the pain. <v Paul Holstar>So yea, I'm afraid of that. I'm also afraid of-I look in the mirror sometimes, and <v Paul Holstar>I've lost about 20 pounds, and I look in the mirror sometimes, and I can see <v Paul Holstar>that sort of concentration camp <v Paul Holstar>skull that so many people with AIDS get <v Paul Holstar>when they've lost every ounce of body fat, and <v Paul Holstar>I can see that in myself. And it really is-it very much scares <v Paul Holstar>me. It scares me that I'll <v Paul Holstar>lose my mind, ya know was lost in my last days, unable <v Paul Holstar>to communicate when I'm conscious. <v Paul Holstar>Ok, so I start with ?sailing?. <v Paul Holstar>All the movies you get, all the TV movies of the person <v Paul Holstar>who overcomes their disability, the person who doesn't feel sorry for themselves, <v Paul Holstar>who is strong and makes it through.

<v Paul Holstar>I realize I used to like-like those because it was like different from the image of, <v Paul Holstar>"oh, you poor handicapped person." But now it-being someone who is disabled, <v Paul Holstar>if you allow-all that feels like pressure to be one of those people, <v Paul Holstar>you know, to-to be courageous, and-and of good humor, <v Paul Holstar>you know, as so much of the time I feel <v Paul Holstar>depressed and cranky. <v Paul Holstar>I don't want to pretend this is an ok experience. <v Paul Holstar>It's not. <v Paul Holstar>I would give anything to turn this around. <v Paul Holstar>And so I-so. <v Paul Holstar>But I still have that in me now that I want to be, I want <v Paul Holstar>all my friends to say Paul died so well, [Paul chuckles] he know, he did it so well. <v Narrator>Paul says he is driven to die a perfect death because as a child,

<v Narrator>he was constantly watched, expected to behave, he was the <v Narrator>son of a minister. <v Paul Holstar>And when a minister goes to interview at a new church, what usually happens is he or she <v Paul Holstar>goes and gives a sample sermon. <v Paul Holstar>And if they like that, then they bring the family, and so we were always on sort of on <v Paul Holstar>display as perfect little kids. <v Paul's Sister>We always loved it, he was always great to us and ?inaudible?. <v Narrator>Paul remembers the closeness and likes to spend time with his sister when she comes <v Narrator>once a week to help out. They laugh over childhood memories. <v Paul's Sister>You tell me you remember Teddy? <v Paul Holstar>Yeah, I do. <v Paul's Sister>Do ya? <v Paul Holstar>Yeah, I remember him because father took him away from me. <v Paul's Sister>Because? <v Paul Holstar>Because I was too old to have a teddy bear anymore. <v Paul's Sister>I see. <v Paul's Sister>Mr. Sweetness in ?life? huh? <v Paul Holstar>We dumped a few years here. <v Paul's Sister>I guess we did. [Conversation becomes indistinct] <v Narrator>But Paul also remembers an uncomfortable, nagging feeling that he was different <v Narrator>from his brothers. At Brandeis University, the shy minister's son <v Narrator>became not only a civil rights advocate, and anti-war demonstrator,

<v Narrator>but after much soul searching, a gay activist. <v Narrator>He was astonished to discover that his father was also gay, but had kept the <v Narrator>fact a secret from his family. <v Paul Holstar>I actually was furious at the time um <v Paul Holstar>because it had been extremely difficult for me to get to that point, and I didn't <v Paul Holstar>understand why both my parents knew for years <v Paul Holstar>that this was the way I was, why they had done nothing and said nothing. <v Narrator>Paul now is anxious to forgive, if not forget, he <v Narrator>sits and relives his 42 years, a twilight stringing <v Narrator>together of images, voices and emotions he is compelled to examine once <v Narrator>again. He remembers his hard work publishing the first gay <v Narrator>and lesbian newspaper in the country and the pain of being branded by <v Narrator>his friends in Boston as an impractical idealist. <v Narrator>He recalls quiet years spent in India meditating at the foot of a guru.

<v Paul Holstar>It was a very special time for me and I <v Paul Holstar>felt that the meditation worked, that the meditation <v Paul Holstar>brought me to a place inside myself where <v Paul Holstar>I was at peace. <v Man>Why don't you let your toes be free? <v Narrator>At last, Paul settled in Oregon, determined with his degree in social <v Narrator>work to help troubled people. <v Narrator>He found Portland to his liking and he found Fred. <v Fred>We got to get ours into the cars and ?inaudible? <v Fred>I had to plug those two play ?inaudible? <v Fred>because I lived over at Sarah's in ?inaudible?. <v Narrator>When Paul tested HIV positive in 1985, his <v Narrator>world came crashing down around him. <v Narrator>He no longer wanted the sexually open relationship that he and Fred had shared for years. <v Narrator>He wanted commitment. <v Paul Holstar>I gave up the fantasy of some new knight <v Paul Holstar>in shining armor coming my way or whatever.

<v Paul Holstar>And I realized that I didn't know how much time I had and that I wanted to <v Paul Holstar>spend it with Fred. <v Fred>I actually watched [Conversation becomes indistinct] <v Narrator>While Fred hesitated to make a commitment, Paul helped to create an AIDS center <v Narrator>where he counseled the dying, some of whom he'd known as friends. <v Paul Holstar>And so I constantly had to steel myself to sit there and <v Paul Holstar>talk to this person with my mind being blown all <v Paul Holstar>at the same time, because I couldn't believe that <v Paul Holstar>this attractive, you know, um what <v Paul Holstar>a lively man was suddenly this wasted figure <v Paul Holstar>in front of myself. <v Paul Holstar>It was very, very hard. <v Narrator>As close as he was to the dying, Paul says he had no idea what it's

<v Narrator>really like. <v Paul Holstar>On some level that we don't-none of us really want to know. <v Paul Holstar>We only know life experience, not devastating deaths. <v Paul Holstar>We wait until we have to experience it, and I was the same. <v Paul Holstar>You know, I could work at it for years, I have counsel people <v Paul Holstar>that I can talk about it and I could understand it. <v Paul Holstar>But being on this side of it is completely different. <v Narrator>How could he have known what it's really like to endure nausea from chemotherapy <v Narrator>or to wake up in the middle of the night sick, sweating, and fighting to breathe? <v Paul Holstar>I feel like I don't have a clue really what's happening to me, <v Paul Holstar>and I certainly don't have any control. <v Paul Holstar>And both of those things feel like like you're in a very speedy-fast <v Paul Holstar>speeding car and there's no one at the wheel. <v Paul Holstar>You know, you're just like zooming somewhere, and you know it's going to crash, <v Paul Holstar>but you don't know when and um

<v Paul Holstar>it's very, very scary. <v Paul Holstar>I don't know how to deal with that, the ?fear? either. <v Paul Holstar>I had lost it. [Conversation becomes indistinct] <v Narrator>A few months ago, Paul started to have spells where his whole body shook <v Narrator>and his mind became foggy. <v Paul Holstar>I didn't know that they were panic attacks, I had no idea what was happening. <v Paul Holstar>And Fred finally figured out that if he came when that was happening, if he came and held <v Paul Holstar>me, that it would go away. <v Paul Holstar>I thought it was something physical to do with with HIV disease <v Paul Holstar>that was happening. <v Paul Holstar>And really what it was, it was just being overtaken by fear. <v Paul Holstar>[Indistinct question] <v Narrator>Fear that led to thoughts of taking his own life. <v Paul Holstar>Sometimes I thought of. <v Paul Holstar>Why go through this you know? <v Paul Holstar>There are cultures that <v Paul Holstar>where people can choose to die, they can choose not

<v Paul Holstar>to go through the worst part of this, um <v Paul Holstar>and I think about that sometimes. <v Paul Holstar>And Fred, says-says to me about that, he says you know <v Paul Holstar>he really feels like there's, um <v Paul Holstar>that it's sort of cheating and that <v Paul Holstar>there's so much for us to learn. <v Paul Holstar>By not short circuiting the process, by being there all the <v Paul Holstar>way through together, and I understand that. <v Narrator>Fred became very angry with Paul when he constantly apologized for depending <v Narrator>on him. <v Paul Holstar>He put on some music and the first song on the C.D.,

<v Paul Holstar>had the words, I can't even say it. <v Paul Holstar>It's incredible. <v Paul Holstar>One voice that said, how long <v Paul Holstar>will it be until you realize that we're in this together? <v Paul Holstar>[Audio clip plays] <v Paul Holstar>And I realized that, I was <v Paul Holstar>holding him back and that I would say to him at some level, <v Paul Holstar>you can't go through this with me. <v Fred>[Indistinct conversation] <v Paul Holstar>You need to let people give you <v Paul Holstar>what they had to give you and accept it with grace.

<v Narrator>There is one thing that Paul is finding almost impossible to accept, <v Narrator>and that is the thought of what will happen to Fred, who is also HIV <v Narrator>positive. <v Paul Holstar>I know a lot of people and so many of them have come forward <v Paul Holstar>to help um, <v Paul Holstar>and I can't stop worrying about it. <v Paul Holstar>That will be Fred's experience you know. <v Paul Holstar>I know it really panics him and it panics me <v Paul Holstar>to think that he'll have to go through this without-without me. <v Narrator>Paul also agonized over whether to die in Oregon or take Fred <v Narrator>with him to die among family in the east. <v Paul Holstar>And then I started thinking about actually dying. <v Paul Holstar>You know, actually, the physical state of <v Paul Holstar>laying in a bed, you know, and-and leaving, and

<v Paul Holstar>I could not imagine doing it without my family around. <v Paul Holstar>Because despite all this sort of separation <v Paul Holstar>over the years, that bond is still <v Paul Holstar>so powerful, so it feels like a full circle you know, feels <v Paul Holstar>like that's where you start, that's where you end and to know that, <v Paul Holstar>that I do have all their love and their support. <v Paul Holstar>Well, it's been important for me too, and there were times in my <v Paul Holstar>life when I didn't feel that. <v Narrator>There is one final task that Paul has set for himself before he goes. <v Paul Holstar>Here's my last chance to figure out how to be at one with <v Paul Holstar>my whole being, you know how-how to really feel that <v Paul Holstar>I have some sort of-of wholeness

<v Paul Holstar>that goes beyond this body in terms of I don't know how much time I've got to <v Paul Holstar>figure it all out. <v Paul Holstar>It's very important for me figure it out, because all the way back to again, being the <v Paul Holstar>son of a minister and feeling like there's a core there in me <v Paul Holstar>that needs to be heard and needs to flower <v Paul Holstar>even at this point in time, and I can't find <v Paul Holstar>it. <v Paul Holstar>Well, I really do believe that something else happens after we die. <v Paul Holstar>I haven't got a clue what that is, you know, but I can't believe <v Paul Holstar>that it's the end. <v Paul Holstar>That's part of what makes me very angry about all this, <v Paul Holstar>is that I love being here on the planet. <v Paul Holstar>You know, I love just watching all of us do our <v Paul Holstar>thing here. And I don't want to turn off the TV, <v Paul Holstar>you know, I don't want to stop seeing it.

<v Bobbie Martin>I used to have a nice figure, I used to be pretty, had <v Bobbie Martin>curly hair, had beautiful fingernails. <v Bobbie Martin>I wasn't vain, but I took some pride in my looks, I <v Bobbie Martin>lost my figure from the transplant. <v Bobbie Martin>I lost 7 fingernails, which-which is average people whose fingernails and transplants. <v Bobbie Martin>For the first time in my life, I don't have curly hair, at least I have some hair. <v Bobbie Martin>And it's not important, the fact that I'm alive <v Bobbie Martin>is important. <v Bobbie Martin>I still dresses as well as I can. <v Bobbie Martin>Well, I wear lipstick and I have-I'm noted for my earrings, and <v Bobbie Martin>I have about 200 pairs of earrings and I have a lot of rings, <v Bobbie Martin>and so I like-I-I try to look as best as I can, but I could

<v Bobbie Martin>show you pictures of, say, 10 years ago where you could <v Bobbie Martin>call me pretty, and I'm not, and it's ok. <v Bobbie Martin>10 years ago, I had no personality, had no identity um I <v Bobbie Martin>had no feelings. I just-I really wasn't Bobbie. <v Narrator>10 years ago, Bobbie Martin had a healthy body, but despite her <v Narrator>smile, her mind was in torment. <v Narrator>As a child, when her family moved from New York City to the quiet of Long Island, <v Narrator>she felt a strange curtain draw across her emotions. <v Narrator>She had become chronically depressed. <v Bobbie Martin>I was just angry with my parents, myself, with everybody <v Bobbie Martin>else, with the world, and I found I <v Bobbie Martin>was very unhappy and I didn't know what to do. <v Bobbie Martin>I did talk to my mom from time to time, but she told me things would get better. <v Narrator>Things did not get better.

<v Narrator>Able to handle less and less pressure, she lost a good job after college <v Narrator>and became a loner, a frightening darkness spread into every corner of <v Narrator>her mind. She left her family and friends and traveled west, <v Narrator>never to return. <v Bobbie Martin>My whole life I thought other people didn't like me. <v Bobbie Martin>I didn't like myself, how could they like me? <v Bobbie Martin>I couldn't think of one outstanding characteristic I had, I never <v Bobbie Martin>felt as though anybody respected me. <v Bobbie Martin>And they didn't, they walked all over me, I might as well have had a sign that said "Kick <v Bobbie Martin>me" on my back because they did. <v Narrator>Bobbie's symptoms worsened as she put off looking for work. <v Narrator>She preferred the company of her plants, which she says asked little of her, but grew <v Narrator>and gave her comfort. <v Narrator>After her parents and brother died, Bobbie found herself alone in the world, <v Narrator>she became obsessed by the fear of death. <v Bobbie Martin>And the 4th part of the meeting is called mutual aid, where people get

<v Bobbie Martin>together, sometimes we have coffee-[Conversation goes into the background]. <v Narrator>Though she was isolated and desperate, she somehow found the courage to join <v Narrator>a mental health support group. <v Narrator>Slowly, her life turned around. <v Bobbie Martin> I felt comfortable there, nobody lied to me. <v Bobbie Martin>I was very weird when I went there, I was having psychotic episodes and nobody <v Bobbie Martin>thought I was weird. They accepted me for-for who I was. <v Bobbie Martin>I became a wonderful person. <v Bobbie Martin>I became somebody that I can look in the mirror and-and respect, <v Bobbie Martin>and people would respect me. <v Narrator>Then two years ago, what Bobbie had most feared happened. <v Narrator>It began with what appeared to be a lingering case of the flu, she told <v Narrator>her doctor she had fainted a couple of times and he ordered blood tests. <v Bobbie Martin>And I remember telling the blood technician, the phlebotomist, <v Bobbie Martin>I hope I don't have cancer.

<v Bobbie Martin>Some of these symptoms my mom described to me when she got cancer, <v Bobbie Martin>feeling so tired, and I was-I was really worried, <v Bobbie Martin>and lo and behold, I had leukemia. <v Narrator>After several courses of chemotherapy, Bobbie's doctor tried a bone marrow transplant <v Narrator>to stop the cancer. <v Bobbie Martin>And the bone marrow transplant didn't take, because he told me that <v Bobbie Martin>the cancer was too deep in the bone marrow. <v Bobbie Martin>And he also gave me two months to live, and this was quite a shock, <v Bobbie Martin>after I thought I aced this operation. <v Bobbie Martin>But I'm not a crier. I didn't cry about this, I uh <v Bobbie Martin>talked over the options. <v Narrator>After getting several opinions, Bobbie decided to stop aggressive medical treatment. <v Narrator>She says that it was hard to decide to do nothing, to take charge of what remained <v Narrator>of her life, to resolve, to calmly wait for death to come.

<v Bobbie Martin>I have no family. I'm not into religion. <v Bobbie Martin>Friends can only help so much that, either they don't know what to say <v Bobbie Martin>or they're scared. <v Bobbie Martin>It was me and I found that I had the strength <v Bobbie Martin>within me. <v Bobbie Martin>Among the many mementos that Bobbie has saved is a card from a friend which <v Bobbie Martin>has a quotation that says, "In the midst of Winter, I finally learned <v Bobbie Martin>that there was an invincible Summer." <v Bobbie Martin>I didn't know what to call this inner strength, <v Bobbie Martin>this courage. <v Bobbie Martin>I like to name things. I feel as though I have control over something when I can name <v Bobbie Martin>it, and so I call it my invincible Summer. <v Bobbie Martin>And I can't tell you why it happened and must be something that's always been <v Bobbie Martin>there, but for the first time in my life, <v Bobbie Martin>I can't say 100 percent, but very close to it, I have no

<v Bobbie Martin>fear, I have no anxiety. <v Bobbie Martin>I'm an assertive person, I'm the person I've always wanted to be. <v Bobbie Martin>It's just a shame that I have terminal cancer, but those are the breaks. <v Woman>And I thought if I ran fast enough, I wouldn't have to think about it. <v Woman>And I could-the time would go quickly and it would take care of everything, and maybe <v Woman>this was all not real, and so that way I could keep it not real. <v Narrator>In the autumn of her life, [Indistinct conversation from Bobbie] the woman who was once a <v Narrator>loner, unable to take care of herself, has become someone willing to let <v Narrator>others lean on her. At 2 cancer support group meetings a week, <v Narrator>she listens with her heart and shares both emotional and practical thoughts. <v Bobbie Martin>Blue Cross is now paying for a home keeper to come out and <v Bobbie Martin>she's doing some cleaning; I mean, I didn't clean when I was well [support group laughs]. <v Bobbie Martin>I feel comfortable with these people, we're all in the same boat. <v Bobbie Martin>We can talk about what bothers us and how people don't understand.

<v Bobbie Martin>One of the remarks I made in the group to someone who was having trouble <v Bobbie Martin>with a friend is just because we have cancer doesn't mean everybody's <v Bobbie Martin>gonna like us. I want my friends to communicate with me <v Bobbie Martin>and some of them have been honest enough to say I'm uncomfortable around you. <v Bobbie Martin>I don't know what to say, I don't know what to do. <v Bobbie Martin>And I tell them well just treat me like Bobbie. <v Narrator>There are times when Bobbie sleeps all day, times when she has severe fever <v Narrator>and chills, times when she has mild side aches, but <v Narrator>she considers herself to be lucky, she's not in pain. <v Bobbie Martin>I have fainted pretty recently. <v Bobbie Martin>I fell off the toilet and fainted. <v Bobbie Martin>[Bobbie laughs] <v Bobbie Martin>Next thing I know, there I am on the floor. <v Bobbie Martin>That was very funny and, <v Bobbie Martin>but no, no excruciating pain.

<v Bobbie Martin>[Classical music plays] <v Narrator>Bobbie spends more time now with books, classical music and what she <v Narrator>calls her own very good company. <v Narrator>She is proud that she lives alone, takes care of herself. <v Bobbie Martin>One of my very, very, very good friends was smothering me <v Bobbie Martin>and she did it out of love. <v Bobbie Martin>I'm not the person that calls somebody else or wants to be called a couple of times <v Bobbie Martin>a day. I don't like people checking in on me. <v Bobbie Martin>I had to tell her that because she told me, I don't know, <v Bobbie Martin>I just don't know, I'm trying to do the best for you, and <v Bobbie Martin>I understood that. Before I got over my depression, <v Bobbie Martin>well, I took no responsibility at all, and so this is a big <v Bobbie Martin>thing for me not only to take it, but also to enjoy taking responsibility. <v Narrator>But despite needing her independence, Bobbie cherishes friendships.

<v Bobbie Martin>I don't believe in heaven and hell, I don't believe in an afterlife. <v Bobbie Martin>I believe that when you die, you die, and um <v Bobbie Martin>you're remembered through friends. <v Narrator>To gather her friends together before her death was one of Bobbie's strongest thoughts <v Narrator>when she found she had only two months left. <v Narrator>So with the help of others, she gave herself a living wake. <v Narrator>She still likes to read messages left in a basket after the evening that meant so much <v Narrator>to her. <v Bobbie Martin>It was a very festive occasion. It looked something like a Mardi Gras. <v Bobbie Martin>Some people didn't know what a living wake was. <v Bobbie Martin>They had no idea it was to celebrate my life because I was terminal. <v Bobbie Martin>And they were very surprised to hear that they-once they got over the shock, <v Bobbie Martin>they-they did have a good time. <v Narrator>But notes from the wake also brings sadness.

<v Narrator>This one came from a support group friend who has since died. <v Bobbie Martin>You were-you are a rare and courageous individual. <v Bobbie Martin>I will always remember with ?inaudible? <v Bobbie Martin>Jerry ?inaudible?. [Bobbie cries] <v Narrator>Only days before her death, Bobbie has a premonition that her end is very near. <v Bobbie Martin>I have visions of me just-kicking <v Bobbie Martin>and fighting to keep-to keep off death, and <v Bobbie Martin>that death is going to have to drag me to get me. <v Bobbie Martin>I'm not giving in there. <v Bobbie Martin>I'm enjoying my life. It's very hard to accept that it's not going to be around much <v Bobbie Martin>anymore. <v Bobbie Martin>And I can't always laugh through this.

<v Bobbie Martin>It's gonna be some times of real seriousness and hopelessnes, <v Bobbie Martin>and that's just what I was feeling, totally hopeless because, there is no hope, <v Bobbie Martin>and that's very hard to accept, when there is no hope, and being cheated out of 25 <v Bobbie Martin>years worth of normal life. <v Narrator>Just two weeks later, Bobbie's premonition that death was near has come true, <v Narrator>although she can't stop the end from coming. <v Narrator>She keeps her will to live, whether for one more hour or one more <v Narrator>breath. <v Bobbie Martin>I don't wanna die, I don't wanna die. <v Bobbie Martin>[Person standing beside her says, "I know sweetheart"] <v Narrator>Before she died, Bobbie wrote, "Dying can be an opportunity

<v Narrator>for growth, wisdom, and savoring every day. <v Narrator>To be given this insight, we paid the highest price of all, death. <v Narrator>When you each face the end of life, I wish you an invincible <v Narrator>summer."