In the Life: Ep. 2002, "In the Life Presents: Gen Silent"

[Narrator:] "In the Life" is funded in part by: the H. van Ameringen Foundation; Patricia Kind, in honor of her brother, Henry van Ameringen; Arcus Foundation; The Estate of Richard W. Weiland; and by the annual support of In the Life members like you. [Narrator:] At the height of the AIDS epidemic, gay men and women came together to care for people with AIDS. Now, a similar health crisis is unfolding across America. [Woman:] A scary thing. [Narrator:] LGBT seniors face homophobia, transphobia and insensitivity in the health care system. Those who are aging without advocates to help navigate the system are especially challenged. [Woman:] These are the ways in which we're not just like anybody else. Next on "In the Life", a special presentation of the film "Gen Silent". Featuring the story of KrysAnne Hembrough, a transwoman struggling to create community and acceptance while battling a terminal illness. [KrysAnne Hembrough:] I lived 50 plus years of my life as a male. I'm just happy to be KrysAnne. [Narrator:] And we talked to the film's director, Stu Maddox, about the power of change. [Stu Maddox:] It's so different than what I hear from the unhappiness that she felt before she transitioned. [theme music] [Narrator:] And now, the film "Gen Silent". [music] [Hembrough:] God wakes me up in the morning, with sunrise. Or with His birds singing. And to this day, I roll over, disheveled hair, no teeth, and I just beam from ear to ear. Because I'm just so thrilled to be who I am. [laughs] I lived 50 plus years of my life as a male. He was a sad, miserable person, angry in himself and the world. And just received no joy or happiness. If I was the best athlete; if I aspired to be king of the hill; maybe I could just drive decide on myself. I mean I looked as ugly as I possibly could. Smoked cigars. Nobody likes the smell of cigars. I did that for a long, long time. And I - and no one ever knew this about me. Nobody ever knew this. I was in a serious, serious depression. Tried to take my life twice. Then I just said, "I know what I need to do." And, I did it. [laughs] Cured the depression. [laughs] I'm just happy to be KrysAnne. Most people that transition expect losses, sometimes a great many losses. But I didn't expect everyone. I haven't heard from them since. For two years, I desperately tried to connect with my family. And some of them, this, they weren't even open. They just - this person is dead. It was horrible. It was vile. But that plays right into how they're stuck in mourning. I think. So now that I'm terminally ill with lung cancer. [Maddux:] How long do they give you to live? [Hembrough:] About a year ago, they said 18 months. So... but, um, just out of stubbornness, I'll probably make it 19 months anyhow. I've done it alone. And things are getting worse and worse. [machine noise] If they ever choose to catch up, before I die. I, I welcome them. We were looking for people to follow and KrysAnne kind of presented herself as a person who was just living out there alone without any support net at all. [Maddux:] After one meeting, it was remarkable. She had a glow about her. She was facing a terminal illness, but she had an inner peace already. And I think that was a result of her making her transition. When we did this film, "Gen Silent", we followed a number of different people in the community, but KrysAnne's story had a depth that was amazing, even to me, because of how much she allowed us into her life. KrysAnne really wanted to tell her story. She knew that her time was limited, and she wanted to make sure people understood that everybody's capable of change, and that nobody should have to go through life alone. And I think in that, she really was able to kind of create a legacy for herself. [wheezing] [Hembrough:] It's getting to the point that I can't do it alone anymore. I'm gonna do everything I can to stay. I don't want to die in a facility. This house is me. It's Jenifer Firestone. [Firestone:]These are the ways in which we're not just like anybody else. LGBT elders are more likely to age alone. Because many never had children. Many are not in close contact or have, you know, have not had great relationships with their families of origin. [Firestone, on phone:] It's not an easy time. [Firestone:] To hire someone to stay with you 24/7 is a lot of money. All of that stuff needed to be taken care of. [wheezing] [Firestone:] Most people have some people to take care of those things. [Maddux:] Are you in contact with anybody in your family now? [Hembrough:] No. Yes, I paid a dear price for this transition. [Maddux:] What are you thinking about? [Hembrough:] The truth? [Maddux:] Mm-Hmm. [Hembrough:] What am I gonna do when I can't do that myself. That's actually what I was thinking of. Or when I can't walk out to the oxygen tank and turn it on. Then again, I'm thinking about if I look good. [laughs] [Maddux:] Because of her hard breathing, we had to kind of time out when we would do these things. And she wanted to show us how difficult it was for her just to live day to day. So the scene with her on the stairs going up with the laundry basket was, you know, something we planned and saved up energy for, her energy for. Because she really wanted to show how awful it is to, to not be able to breathe, you know. And do it alone. I stayed with her for several weeks at a time and that kind of melts away the camera. I became a caretaker because I was the logical choice really to be there with her all the time. I was there anyway shooting. She also was very lucky to have a hospice worker, Jenifer Firestone, who had been through the AIDS crisis and had been a caregiver for friends because she knew that what is needed is to bring friends into the picture. Maybe friends that didn't even exist. Get people together to create a support group for this person who is slipping through the cracks. [music] [various talking] [Hembrough:] The room was filled with just all kinds of kind-hearted people. [Firestone:] You know, I've sort of hooked up other people with each other, to help her out to help her through this situation. A lot of it came from the LGBT community. [Hembrough:] These are people that I have only known since October. [Firestone:] And that, I think, has been really exciting to her, to have people that are just so accepting. [laughs] [Woman, off screen:] You're a girl now. You're allowed to cry. [Firestone:] But thank God, it's happening. We're gonna need people to be around. [Hembrough:] They need to at least accept me or it just won't work. [wheezing] I may have to modify that a little bit. I need people to do things for me and... [Maddux:] Modify it? [Hembrough:] Well, modify my - I'm not - I won't be comfortable with someone that's not accepting of transgendered people. I'd rather not have it done. Just, um... [Maddux:] You'd rather not have the medical treatment or the care given to you? [Hembrough:] Anything. I mean, well now it would be a non-op transsexual, which means I still have a penis. [Maddux:] There's a little shock value that people would have in some cases if they didn't. [Hembrough:] Absolutely, I mean... hah. [Man on phone:] Hey Stu, it's Bob. It's urgent. KrysAnne collaped They've got her in the ambulance. They're stabilizing her right now, but... Uh, I have questions that the ambulance needs to know. I can't believe this of all things. Is she fully male? You know, if she has the bottom surgery. Um, so, okay, call me when you can. When we started showing this film before we let it out there to the world. We kept getting people come back and saying, "You know, I don't really know what's different about LGBT aging. Even after you've shown me all these wonderful stories, I don't get what's different than a normal person aging." What we wanted to do was like punctuate - really make it clear to people that there's a formula that conspires to cause this problem of people dying earlier than they need to when they're LGBT and, and so we felt like we really needed to put that on the screen. You know, that the isolation, the insensitivity and the lifelong fear that older LGBT people just bring to the equation because they've been through so much stuff. You could have been institutionalized for being KrysAnne. You know, she talks about being given electroshock therapy. I mean, you're not too trusting of hospitals or doctors after that. Plus you don't have anybody to talk to. There's the isolation. You know, you don't have anybody really to go through this with you because you're isolated, from being estranged from your family. And you don't really have kids. You can say one small thing, like I don't know whether she's fully male or not and that can trigger the whole fear from a past- you know, a lifetime of, of bad experiences and that can make you not want the care. That can make you check out of the emergency room early. That can make you die sooner. That was pretty scary [omitted]. [Hembrough:] I mean, the lung had totally collapsed and we had to get to the hospital, so. Monday was STAR radiation for two weeks. And then, Joe, stop trying to make me feel good, I know what it's like. A scary thing. [music] Hold your head up, please. Look at me in the eyes, okay? I'm okay, and you're gonna be okay. [Hembrough:] The word is out about me being pretty sick, and so now my family starts to come back into my life and... Are they coming here because they accept me as KrysAnne? Or because I'm just a person dying? But the silver lining is they're here, some of them. [Son:] I obviously want to contribute as best as I can. [Hembrough:] Mm-Hmm. What is it that you want to do to help? [Son:] Anything that you need. [Hembrough:] I don't, you know... [Hembrough:] I need acceptance. [Son:] I found out at 17, so it was pretty difficult at 17. Just finishing high school and everything. [Son:] I'll be back tomorrow. [Hembrough:] Yeah. [Son:] There was a major depression. Random spots on the floor, she'd pass out at. And it was just hard to come home from practice or anything like that just to see that and then she got off the floor with the transformation, and I was happy for that. But I just wasn't ready to really accept it, I guess. [Son:] I love you. [Hembrough:] I love you too, Adam. [Son:] See you tomorrow. [Hembrough:] God willing. [Son:] Bye Dad. I don't know what the motivations are and I don't have time to figure them out. For me to go home, I can't take care of the house. I need people to help me take care of myself. Maybe with my son. [Maddux:] Do you think other family members will show up eventually? [Son:] Some, I would say. There's a lot of them set in their ways, and it's hard to teach an old dog new tricks. When you make films you realize pretty early on that there are at least two sides to every story. And in KrysAnne's case, there was estrangement. But it was more probably than just her being transgender. I think that was a large part of it, but I think that there was a lot of run-up to that final blow that caused the family to stay away. Certainly KrysAnne was a different person than her family remembered. And because they hadn't been around for a few years, they didn't know the new person. I think as time went on, her son was able to be more and more present. But the problem was, there just wasn't enough time left. [Maddux:] How often has your son been up here? Maybe four or five times. Maybe four. [Hembrough:] What was the pulse? [Nurse:] 69. [Hembrough:] I've got some legal people coming in so, - radiation is at three o'clock - It's gonna be very expensive - I'm trying to get my computer in here - are there any - are there any of my clothes that you want me to? - [Woman:] we wanted to other language concerning being buried - [Hembrough:] double-check that last estrogen - wait a minute - honest you can - [music and telephone ringing] [Hembrough:] Jeez, I didn't know it was so hard to die. [Nurse:] I think you're getting a little nervous about getting home, 'cause you... [Hembrough:] Not nervous, but concerned. Where's my family? Where's my son, hmm? You would be too. [Nurse:] Absolutely. [Firestone:] The goal with this radiation, was that it would buy her some time at home. And I think it's been devastating to her to think that she might have to go into a nursing home at age 59 because she didn't have people in her life, enough people in her life who could help her out. [Hembrough:] Maybe we can put some kind of team together to cover 24 hours a day. [Firestone:] I would say, like nine or 10 at night, until six or seven in the morning. She needed somebody with her 24 hours a day seven days a week. Which is a tall order to fill. Which is what we're asking KrysAnne's network of people to do. She doesn't need skilled nursing care at home. She needs somebody to be there for her so that she doesn't, you know, get afraid. I believe that it's possible for them to be what this person needs. You know, we've done it before. Gay people really mobilized around the AIDS epidemic. We, the various friends, sort of got ourselves together. We - I remember this vividly - we called a meeting, we got in touch with each other and we organized ourselves to take care of a friend of ours who never would have done it. Now aging people and aging issues are an epidemic in the LGBT community. [Firestone, on phone: ] Right, well I knew you couldn't, like, you know, you couldn't like get there. All righty. Alright, alright. That's fine. [Firestone:] She and I both knew that it may not be workable. You know, I was not positive. [Firestone, on phone:] That's out. And that's out. [Man:] Okay. I'm gonna make it stand up this, this, this way, but we can't light them! Because they'll blow up the whole room. [laughs] [Hembrough:] The hospital! [laughter] [Man:] The whole hospital! [Hembrough:] Every single person that was like in that dinner that we had, I mean, they were all here. [clapping] [Man:] Pretend they're lit, because it ain't gonna happen. [laughter] [Hembrough:] Now who would have ever thought about a butterfly. [Firestone:] Now it's a week later. People are taking time and energy out of their schedules to, to be with her. And they don't all even know her very well. We gave her this schedule as a birthday present. [Hembrough:] Wow. All the people that have volunteered to come and stay with me. [Firestone:] KrysAnne, [clapping] that is really great. [Hembrough:] A silly, simple list of people, that can. There was no way I was gonna go home without something like that. [Firestone:] We have a big thank you for all the people here that have made this all possible. [Nurse:] Oh absolutely. We should get a group picture! [Firestone:] She's not nearly as bitchy as she looks. [laughter] [Man:] Give her some time, she'll be back […] [Nurse:] She most certainly is. [Hembrough crying] [Firestone:] It's all good. What I'm gonna be watching most carefully is making sure that this very delicate, very fragile little system that we've created functions properly. [Firestone:] Hello Madame. [wheezing] Come on Bubala. [Hembrough, emotional:] I never think I'd be back here. [Firestone:] You're back! [laughter] [music] [Firestone:] For the first two weeks of that one month schedule, I think it went pretty well. [Maddux:] So your support group worked? [Hembrough:] As dedicated as ever. And a wake-up today, we're gonna do a seaweed wrap. And we're, we're also gonna make the West, meet East bleu cheese with chicken... sushi. So! [Maddux:] How's Adam been? I can't tell one way or the other. [Son:] I was doing my own thing for so long, and I just wasn't ready for it. I mean, is that there's a little bit more time to kind of reconcile, I guess. [Hembrough:] I have to depend on all kinds of new people and it's hard. It's been so quick that they came into my life. [Firestone:] A lot of people who are dying have a real love/hate relationship with these very loving and well-intentioned people who they need to take care of them. With KrysAnne, she got stronger and more confident. By the third week, she had kind of had it with having people with her round-the-clock. The idea was to be here, 'cause I wasn't too comfortable. I got comfortable real fast. [Firestone:] She did well for a few weeks on her own. Which was a gift to her. And then she began to deteriorate again, which we knew was gonna happen. It just, takes every ounce of my energy to get off this floor to do anything. [wheezing] [wheezing and television] Being alone is really hard. It's really hard. [crying] [wheezing] I went through all kinds of [omitted] in my life. I was in Vietnam. Transition is hard. Losing my family is hard. And this is - this is terrifying. Just don't let it happen to anyone you know. [wheezing and television] [music] When KrysAnne passed away, you know, it was profound sadness along with relief. She had faced a terminal illness and she was, she was in a lot of pain at the end. And... I think she wanted to go. But we miss her. Everybody who was part of that caregiving team still misses her today. And her laugh particularly. And just her ability to bring happiness to people is so different than what I hear from the unhappiness that she felt and oftentimes shared with other people before she transitioned. So, the one thing I think I will remember is being at that Christmas party and seeing not only everybody having a great time, but seeing the look of contentment on her face that she was surrounded by a group of people that cared about her. And were gonna take care of her, you know. That were gonna go the distance for her. That's a big difference. You know. [Narrator:] Thank you for watching "In the Life". To learn more about "Gen Silent" or to tell us your thoughts about the show, text ITL to 69866 on your mobile phone or visit itlmedia.org. You can also download and share episodes, watch exclusive webcasts, extended interviews, and sign up for "In the Life" airdate alerts. [music] "In the Life" is funded in part by: the H. van Ameringen Foundation; Patricia Kind, in honor of her brother Henry Van Ameringen; Arcus Foundation; The Estate of Richard W. Weiland; and by the annual support of In the Life members like you. [logo music] [logo music]