1 00:00:00,000 --> 00:00:10,800 [Music] 2 00:00:10,800 --> 00:00:14,100 What does it mean to be called crazy in a crazy world? 3 00:00:14,100 --> 00:00:18,300 Listen to Madness Radio, voices and visions from outside mental health. 4 00:00:18,300 --> 00:00:27,900 [Music] 5 00:00:27,900 --> 00:00:30,600 Welcome to Madness Radio. This is your host Will Hall. 6 00:00:30,600 --> 00:00:33,600 And today I'm joined by co-host Jack Smack-Namara. 7 00:00:33,600 --> 00:00:36,600 So welcome back to Madness Radio, Jacks. 8 00:00:36,600 --> 00:00:39,100 Thanks, I'm psyched to be here Will. 9 00:00:39,100 --> 00:00:40,600 Yeah, it's really good to see you again. 10 00:00:40,600 --> 00:00:44,700 And we have a special treat, someone from my old stomping grounds 11 00:00:44,700 --> 00:00:47,700 in Northampton, Massachusetts, joining us Allison Smith. 12 00:00:47,700 --> 00:00:51,700 Do you want to introduce Allison Forrest, Jacks? 13 00:00:51,700 --> 00:00:53,400 Yeah, I'd be happy to. 14 00:00:53,400 --> 00:00:57,900 So Allison Smith is a writer, a voice-year, and a psychiatric survivor. 15 00:00:57,900 --> 00:01:02,200 Her stories and essays have appeared in a number of outlets from Granta to real simple 16 00:01:02,200 --> 00:01:04,700 to PBS' stories from the stage. 17 00:01:04,700 --> 00:01:08,500 Her memoir, "Name All the Animals" was a New York Times notable book 18 00:01:08,500 --> 00:01:11,400 and named one of people's 10 best books of the year. 19 00:01:11,400 --> 00:01:16,700 A coming-of-age story, "Name All the Animals" opens on the day Allison's brother died in a car crash 20 00:01:16,700 --> 00:01:20,500 and covers the next three years of her life as she navigates her way through grief, 21 00:01:20,500 --> 00:01:22,400 faith, and sexuality. 22 00:01:22,400 --> 00:01:26,900 Allison is at work on a sequel memoir about her experiences hearing voices. 23 00:01:26,900 --> 00:01:32,900 Allison lives in Northampton, Massachusetts, and Brooklyn, with her partner Cindy, two dogs, and six chickens. 24 00:01:32,900 --> 00:01:36,400 She can be found on the web at "NameAllTheAnimals.com". 25 00:01:36,400 --> 00:01:39,400 Thank you so much for being here, we're really excited to have you, Allison. 26 00:01:39,400 --> 00:01:41,400 Oh, thank you so much for inviting me. 27 00:01:41,400 --> 00:01:47,400 This is only my favorite radio show and podcast, so I'm very honored to be here. 28 00:01:47,400 --> 00:01:51,400 That's great to hear from a literary celebrity, which apparently you are. 29 00:01:51,400 --> 00:01:55,400 Congratulations, and all here is success, pretty amazing. 30 00:01:55,400 --> 00:01:58,400 I'm sure we ran into each other at Broadside Books. 31 00:01:58,400 --> 00:02:04,400 I used to work at Broadside Books Shop in Northampton, and I remember selling many, many, many copies 32 00:02:04,400 --> 00:02:10,400 of very popular, very well-received, critically acclaimed "Name All The Animals" by Allison Smith. 33 00:02:10,400 --> 00:02:16,400 And then I got to meet you in person at "Mad Camp", which was completely off them. 34 00:02:16,400 --> 00:02:19,080 - Mad camp, yeah. - Mad camp! 35 00:02:19,080 --> 00:02:21,100 - Mad camp, yeah, yeah. 36 00:02:21,100 --> 00:02:22,980 So Allison, what'd you think of Mad Camp? 37 00:02:22,980 --> 00:02:26,280 - Mad camp was extraordinary. 38 00:02:26,280 --> 00:02:27,880 - Well how should we get started? 39 00:02:27,880 --> 00:02:30,580 What's a good way to kick off our interview with you, Allison? 40 00:02:30,580 --> 00:02:34,920 - Well, someone once said to me, "cronology is your friend." 41 00:02:34,920 --> 00:02:37,700 So we could just start with the first thing, 42 00:02:37,700 --> 00:02:41,120 which is we met at Broadside, Bookshop. 43 00:02:41,120 --> 00:02:43,840 A great, great bookshop at Northampton. 44 00:02:43,840 --> 00:02:46,480 And my first book was coming out. 45 00:02:46,480 --> 00:02:49,480 And I wrote, name all the animals 46 00:02:49,480 --> 00:02:52,560 in between hospitalizations really 47 00:02:52,560 --> 00:02:55,040 for hearing voices and being diagnosed 48 00:02:55,040 --> 00:02:57,320 with a whole all manner of things. 49 00:02:57,320 --> 00:02:59,360 The book was really for my brother. 50 00:02:59,360 --> 00:03:01,120 And it was three years in my life 51 00:03:01,120 --> 00:03:05,000 from the age of 15 when he died to the age of 18, 52 00:03:05,000 --> 00:03:08,080 just before I left home and got myself 53 00:03:08,080 --> 00:03:10,120 in the whole mess of trouble. 54 00:03:10,120 --> 00:03:13,440 And so what I realized later on 55 00:03:13,440 --> 00:03:16,520 when I found another way to think about hearing voices 56 00:03:16,520 --> 00:03:19,960 is that I had written about hearing voices 57 00:03:19,960 --> 00:03:23,280 and name all the animals without really realizing it. 58 00:03:23,280 --> 00:03:27,300 And so I could read a short excerpt from the book, 59 00:03:27,300 --> 00:03:29,100 the kind of touches on that. 60 00:03:29,100 --> 00:03:30,720 - That'd be great, we'd love to hear that. 61 00:03:30,720 --> 00:03:34,280 - Just a brief setup, this is Roy, 62 00:03:34,280 --> 00:03:37,240 my brother died in a car crash, 63 00:03:37,240 --> 00:03:39,600 really, really pretty close to our house. 64 00:03:39,600 --> 00:03:41,360 And on the day he died, 65 00:03:41,360 --> 00:03:44,800 just the house of course filled up with all these neighbors 66 00:03:44,800 --> 00:03:49,400 and friends, but also a lot of nuns and priests. 67 00:03:49,400 --> 00:03:54,640 We grew up in a really devoutly Catholic community. 68 00:03:54,640 --> 00:03:58,960 And all of the nuns and priests were trying to comfort me 69 00:03:58,960 --> 00:04:01,400 by telling me that everything was okay 70 00:04:01,400 --> 00:04:05,560 because Roy, my brother was with God now. 71 00:04:05,560 --> 00:04:09,600 But I was 15 and my thought about that was like, 72 00:04:09,600 --> 00:04:12,440 well why would you take him from me God? 73 00:04:12,440 --> 00:04:14,120 That sucks. 74 00:04:14,120 --> 00:04:20,080 And so this is what I did on the day he died. 75 00:04:20,080 --> 00:04:22,600 We weren't good at much. 76 00:04:22,600 --> 00:04:26,600 Mother's father was a farmer who lost three farms 77 00:04:26,600 --> 00:04:28,120 and died penniless. 78 00:04:28,120 --> 00:04:32,000 Father's father was a telephone line repairman. 79 00:04:32,000 --> 00:04:35,200 He died at 36 complications from an ear infection. 80 00:04:35,200 --> 00:04:38,000 Nobody had made it to college. 81 00:04:38,000 --> 00:04:40,320 Roy was going to be the first to do that. 82 00:04:40,320 --> 00:04:42,400 But we had one talent, faith. 83 00:04:42,400 --> 00:04:46,320 With every ounce of our imagination we believed. 84 00:04:46,320 --> 00:04:50,680 And my brother and I grew up in the shadow of this faith 85 00:04:50,680 --> 00:04:53,280 in the great floodplain of belief. 86 00:04:53,280 --> 00:04:57,480 I knew only Catholics in those early days 87 00:04:57,480 --> 00:05:00,680 and the only differences were Catholic differences. 88 00:05:00,680 --> 00:05:04,880 The Sisters of St. Joseph as opposed to the Sisters of Mercy, 89 00:05:04,880 --> 00:05:08,720 Pope John Paul the first or Pope John Paul the second. 90 00:05:08,720 --> 00:05:13,240 In these surroundings you'd be hard pressed not to believe 91 00:05:13,240 --> 00:05:14,880 in the existence of God. 92 00:05:14,880 --> 00:05:17,480 It would be like saying you didn't believe in oatmeal 93 00:05:17,480 --> 00:05:20,280 or cars or the laws of gravity. 94 00:05:20,280 --> 00:05:24,520 Back then Christ was more real to me 95 00:05:24,520 --> 00:05:27,080 than the children I met at school. 96 00:05:27,080 --> 00:05:29,760 Walking to the school bus or down the path 97 00:05:29,760 --> 00:05:31,800 through the gully at the end of our street, 98 00:05:31,800 --> 00:05:35,320 Christ would appear to me his long robes flowing, 99 00:05:35,320 --> 00:05:37,720 his bruised hands held out. 100 00:05:37,720 --> 00:05:41,800 He was my comforter, my most intimate friend. 101 00:05:41,800 --> 00:05:44,360 So on the day Roy died, 102 00:05:44,360 --> 00:05:46,960 I went into the upstairs bathroom 103 00:05:46,960 --> 00:05:49,120 and sat down on the hamper. 104 00:05:49,120 --> 00:05:52,440 It was the only room in the house where I could be alone. 105 00:05:52,440 --> 00:05:54,960 The sun strained through the frosted glass 106 00:05:54,960 --> 00:05:57,480 and in this defused light. 107 00:05:57,480 --> 00:05:59,800 God appeared. 108 00:06:01,760 --> 00:06:06,120 I called to him and Christ showed up there 109 00:06:06,120 --> 00:06:08,640 in the white-tailed, tiled bathroom 110 00:06:08,640 --> 00:06:11,320 and sat down on the edge of the tub. 111 00:06:11,320 --> 00:06:13,280 His robe bunched up in his lap, 112 00:06:13,280 --> 00:06:15,080 his bare feet on the floor. 113 00:06:15,080 --> 00:06:19,000 Yes, he said and he leaned in towards me. 114 00:06:19,000 --> 00:06:22,560 Where's Roy, I asked? 115 00:06:22,560 --> 00:06:24,320 One you're gonna let him come back. 116 00:06:24,320 --> 00:06:28,600 And Christ didn't answer. 117 00:06:28,600 --> 00:06:29,760 He just stood up. 118 00:06:31,000 --> 00:06:34,440 He wavered for a moment on the tile floor. 119 00:06:34,440 --> 00:06:36,360 He touched the ends of his sleeves, 120 00:06:36,360 --> 00:06:39,440 stared at his feet and left. 121 00:06:39,440 --> 00:06:42,960 Without a word, he walked out through the wall 122 00:06:42,960 --> 00:06:44,560 next to the bathroom mirror 123 00:06:44,560 --> 00:06:48,520 and I watched his robe trail behind him. 124 00:06:48,520 --> 00:06:51,120 And then God was gone. 125 00:06:51,120 --> 00:06:53,880 It felt like somebody had suddenly 126 00:06:53,880 --> 00:06:55,600 taken the needle off the record 127 00:06:55,600 --> 00:06:59,400 and for the first time, the music I had heard my whole life, 128 00:06:59,400 --> 00:07:03,360 the music that was all around us just stopped. 129 00:07:03,360 --> 00:07:06,560 I'd never heard such silence. 130 00:07:06,560 --> 00:07:10,880 I rubbed my ears for a moment. 131 00:07:10,880 --> 00:07:14,080 I thought that perhaps I had gotten something stuck in them, 132 00:07:14,080 --> 00:07:16,920 some water from the shower. 133 00:07:16,920 --> 00:07:21,080 I hopped on one foot and I shook my head back and forth, 134 00:07:21,080 --> 00:07:22,160 but there was nothing. 135 00:07:22,160 --> 00:07:27,680 Would you now look back on that experience as hearing voices 136 00:07:27,680 --> 00:07:30,640 as like that Jesus was coming to you 137 00:07:30,640 --> 00:07:32,320 as some kind of hallucination 138 00:07:32,320 --> 00:07:36,360 and that that was an altered state experience you were having 139 00:07:36,360 --> 00:07:38,880 or how do you view that experience now? 140 00:07:38,880 --> 00:07:41,440 - That's such a great question. 141 00:07:41,440 --> 00:07:44,520 I think that once I 142 00:07:44,520 --> 00:07:50,240 sort of stepped away from this one way of looking at voices, 143 00:07:50,240 --> 00:07:55,240 I had been sort of drilled into me by psychiatry 144 00:07:55,240 --> 00:07:57,200 that it's a brain disorder 145 00:07:57,200 --> 00:07:58,880 and there's a chemical imbalance. 146 00:07:58,880 --> 00:08:03,640 I started looking around me and realizing, 147 00:08:03,640 --> 00:08:05,960 gosh, there's just so many kinds of voice hearing 148 00:08:05,960 --> 00:08:08,840 going on around us and we've stuck them all 149 00:08:08,840 --> 00:08:11,480 into all these different categories, but why? 150 00:08:11,480 --> 00:08:14,080 - So you were here having these experiences 151 00:08:14,080 --> 00:08:15,720 all through your childhood where they, 152 00:08:15,720 --> 00:08:20,080 when did they get told that it was a psychiatric symptom? 153 00:08:20,080 --> 00:08:24,920 - So my father was a very, 154 00:08:26,240 --> 00:08:29,680 I realize now a really big spiritual voice here. 155 00:08:29,680 --> 00:08:33,120 And as a kid, I wasn't really sort of in the Catholic church 156 00:08:33,120 --> 00:08:36,240 as much as the church of dad and I think my father 157 00:08:36,240 --> 00:08:41,280 taught me how to be really receptive 158 00:08:41,280 --> 00:08:44,960 but that praying was sort of about listening deeply 159 00:08:44,960 --> 00:08:48,720 and practicing every day to hear God's voice. 160 00:08:48,720 --> 00:08:51,800 And if you do that every day, like I did it 161 00:08:51,800 --> 00:08:55,840 from the moment I woke up to the moment I went to bed 162 00:08:55,840 --> 00:08:58,800 'cause I wanted to hear and see these characters. 163 00:08:58,800 --> 00:09:00,600 My dad was talking to all day. 164 00:09:00,600 --> 00:09:01,760 He talked to the Holy Family. 165 00:09:01,760 --> 00:09:02,920 He talked to St. Jude. 166 00:09:02,920 --> 00:09:05,760 He talked to St. Anthony. 167 00:09:05,760 --> 00:09:08,760 And after all that practice, 168 00:09:08,760 --> 00:09:13,320 I too started to experience really vivid, 169 00:09:13,320 --> 00:09:18,000 deeply sensed experiences of the Holy Family in saints 170 00:09:18,000 --> 00:09:22,080 or that would kind of fall into the category of hearing voices 171 00:09:22,080 --> 00:09:24,680 but no one pointed that out to me 172 00:09:24,680 --> 00:09:28,880 because it's kind of okay, it's accepted to hear, 173 00:09:28,880 --> 00:09:32,200 to be religious and faithful or hear God's voice. 174 00:09:32,200 --> 00:09:35,440 So I didn't think about it any other way. 175 00:09:35,440 --> 00:09:36,880 And then I lost all that. 176 00:09:36,880 --> 00:09:37,720 I lost it. 177 00:09:37,720 --> 00:09:41,720 It was when silent on the day Roy died. 178 00:09:41,720 --> 00:09:44,800 And for the next three years, I really, 179 00:09:44,800 --> 00:09:48,840 I didn't have that experience. 180 00:09:48,840 --> 00:09:52,960 - So in these previous experiences that you have with Jesus, 181 00:09:52,960 --> 00:09:57,320 was Jesus ever as annoying as he was after your brother died 182 00:09:57,320 --> 00:10:00,120 when he just kind of didn't answer you and just disappeared? 183 00:10:00,120 --> 00:10:02,320 - No, never. 184 00:10:02,320 --> 00:10:06,480 I really think there was something about my faith then 185 00:10:06,480 --> 00:10:10,360 that was very protected and childlike. 186 00:10:10,360 --> 00:10:13,600 That my dad taught me how to hear God's voice 187 00:10:13,600 --> 00:10:16,000 but he also orchestrated things quite well 188 00:10:16,000 --> 00:10:20,680 so that he always told me what to ask Jesus for 189 00:10:20,680 --> 00:10:24,480 and mysteriously and miraculously it always worked out 190 00:10:24,480 --> 00:10:28,520 that we got that thing I asked for. 191 00:10:28,520 --> 00:10:29,800 - Did you ever, did you have a vision 192 00:10:29,800 --> 00:10:32,080 where you actually saw Jesus before 193 00:10:32,080 --> 00:10:34,240 in the bathroom after your brother died? 194 00:10:34,240 --> 00:10:36,640 - Well, I often saw Jesus. 195 00:10:36,640 --> 00:10:40,080 I saw him all the time out in the yard, 196 00:10:40,080 --> 00:10:44,560 quite often in the yard or the woods at night in my room. 197 00:10:44,560 --> 00:10:48,760 I saw and heard him quite a bit. 198 00:10:48,760 --> 00:10:52,640 My father was seeing and hearing an enormous amount. 199 00:10:52,640 --> 00:10:55,360 It was just part of daily life. 200 00:10:55,360 --> 00:11:00,440 - And was it actually having an outside of the same 201 00:11:00,440 --> 00:11:03,200 as if somebody else was talking or an ounce just like 202 00:11:03,200 --> 00:11:06,280 you see a deer, you see a bird, you see Jesus 203 00:11:06,280 --> 00:11:07,920 or was it more something that was happening 204 00:11:07,920 --> 00:11:10,280 on the inside as well or how did you, 205 00:11:10,280 --> 00:11:12,440 I'm just really interested in that experience. 206 00:11:12,440 --> 00:11:16,360 - Yeah, I love these questions 207 00:11:16,360 --> 00:11:20,160 because we don't really think about it that much 208 00:11:20,160 --> 00:11:23,840 when we think about faith voices or religious voices 209 00:11:23,840 --> 00:11:26,080 but I think there's a whole variety of stuff going on 210 00:11:26,080 --> 00:11:29,920 for people with religious voices and I was quite young. 211 00:11:29,920 --> 00:11:32,280 This was going on until I was 15 212 00:11:32,280 --> 00:11:36,760 and so they were children sometimes experienced voices 213 00:11:36,760 --> 00:11:38,760 differently, I think they're just more elastic 214 00:11:38,760 --> 00:11:40,720 than when you grow older. 215 00:11:40,720 --> 00:11:45,720 And so for me, I didn't consciously distinguish 216 00:11:45,720 --> 00:11:50,720 between this is Jesus and he's one kind of experience. 217 00:11:50,720 --> 00:11:53,880 He's maybe not an embodied experience 218 00:11:53,880 --> 00:11:58,880 and this is my brother and he's physically present. 219 00:11:58,880 --> 00:12:04,760 To me, they felt, I don't know how to put it 220 00:12:04,760 --> 00:12:10,080 as much as equally authentic, just sort of equally 221 00:12:10,080 --> 00:12:11,480 really happening. 222 00:12:12,440 --> 00:12:16,720 But I think on some level, I understood 223 00:12:16,720 --> 00:12:19,840 that there were sort of different spheres of experience 224 00:12:19,840 --> 00:12:23,280 even as a child and that it was okay 225 00:12:23,280 --> 00:12:27,600 if I had sought and heard Jesus 226 00:12:27,600 --> 00:12:30,280 and maybe some of the other people around me didn't. 227 00:12:30,280 --> 00:12:36,280 - I'm curious if Jesus leaving after your brother died 228 00:12:36,280 --> 00:12:40,400 and it sounds like being fairly absent for the next three years 229 00:12:40,400 --> 00:12:42,720 if that shook your religious beliefs. 230 00:12:42,720 --> 00:12:45,320 - Oh, it did, absolutely. 231 00:12:45,320 --> 00:12:48,760 It was just over and I was terribly ashamed 232 00:12:48,760 --> 00:12:53,760 in that world, that very hermetically sealed Catholic world. 233 00:12:53,760 --> 00:12:58,920 I had to then hide that I wasn't hearing voices. 234 00:12:58,920 --> 00:13:03,760 I had to hide that I had a profound law. 235 00:13:03,760 --> 00:13:05,880 I was terribly ashamed. 236 00:13:05,880 --> 00:13:08,760 I was told over and over faith is a gift from God 237 00:13:08,760 --> 00:13:11,280 and I thought, "God's taking it from me." 238 00:13:11,280 --> 00:13:13,960 He's somehow, this is a punishment. 239 00:13:13,960 --> 00:13:17,960 It's connected to taking Roy in my brother 240 00:13:17,960 --> 00:13:22,040 and then he's left and what does this mean? 241 00:13:22,040 --> 00:13:25,840 But I better be careful who I talk to about this. 242 00:13:25,840 --> 00:13:30,600 - Well, so it was stigmatized to not hear Jesus at that point. 243 00:13:30,600 --> 00:13:33,320 Usually it's the reverse for people. 244 00:13:33,320 --> 00:13:38,320 - Yes, yes, that is why I think things got really weird 245 00:13:38,320 --> 00:13:41,200 for me when I left home and went to college 246 00:13:41,200 --> 00:13:46,200 and suddenly being an atheist was cool or accepted 247 00:13:46,200 --> 00:13:50,840 and it felt very topsy turvy that world. 248 00:13:50,840 --> 00:13:54,240 - So then I'm wondering skipping into college now 249 00:13:54,240 --> 00:13:56,680 since chronology is our friend. 250 00:13:56,680 --> 00:13:59,560 If you want to read for us the piece of writing 251 00:13:59,560 --> 00:14:01,880 you brought on hearing voices in college 252 00:14:01,880 --> 00:14:03,760 and what happened when you were discovered 253 00:14:03,760 --> 00:14:05,320 as someone who was a voice here. 254 00:14:06,560 --> 00:14:08,880 - Yes, thanks, Jacks. 255 00:14:08,880 --> 00:14:13,880 This little piece I wrote is from kind of a work in progress 256 00:14:13,880 --> 00:14:20,680 trying to start writing about the next memory 257 00:14:20,680 --> 00:14:22,680 which is really about hearing voices. 258 00:14:22,680 --> 00:14:28,560 When I was 18 I started hearing voices. 259 00:14:28,560 --> 00:14:30,960 It began simply enough. 260 00:14:30,960 --> 00:14:34,520 The space around me filled with scraps of sound 261 00:14:34,520 --> 00:14:37,240 echoes murmurs, vibrations. 262 00:14:37,240 --> 00:14:42,200 As I moved from room to room the sounds followed me. 263 00:14:42,200 --> 00:14:48,200 One night something charged, something electric 264 00:14:48,200 --> 00:14:52,680 spilled into the empty air and words poured out. 265 00:14:52,680 --> 00:14:55,000 Words I didn't think, I didn't say. 266 00:14:55,000 --> 00:14:58,560 And then the words became colors 267 00:14:58,560 --> 00:15:01,200 and the colors became sense 268 00:15:01,200 --> 00:15:04,480 and the sense became pictures. 269 00:15:04,480 --> 00:15:08,240 Sometimes it was frightening 270 00:15:08,240 --> 00:15:13,240 and then other times it felt as if someone had adjusted the lens, 271 00:15:13,240 --> 00:15:17,360 sharpened an image and what had always been there 272 00:15:17,360 --> 00:15:19,240 came into view. 273 00:15:19,240 --> 00:15:22,000 It felt strangely right. 274 00:15:22,000 --> 00:15:26,720 It felt faded like a life unfolding. 275 00:15:26,720 --> 00:15:29,440 This is how it unfolds I thought. 276 00:15:29,440 --> 00:15:31,120 This is the next thing. 277 00:15:31,120 --> 00:15:35,280 It didn't occur to me to tell anyone about this. 278 00:15:35,280 --> 00:15:38,880 I figured if this was happening to me it was happening to everybody. 279 00:15:38,880 --> 00:15:41,880 But then I got caught. 280 00:15:41,880 --> 00:15:44,600 Three years later a senior in college, 281 00:15:44,600 --> 00:15:48,600 another student came across me talking to the sounds. 282 00:15:48,600 --> 00:15:53,800 When I couldn't explain why I was conversing with the empty air, 283 00:15:53,800 --> 00:15:58,840 she walked me across campus and deposited me outside of psych services. 284 00:15:59,560 --> 00:16:03,960 By the end of the day I was confined to a mental hospital 285 00:16:03,960 --> 00:16:06,960 and attendant stood over me and asked, 286 00:16:06,960 --> 00:16:10,520 "Are you hearing voices right now?" 287 00:16:10,520 --> 00:16:12,840 And for the first time I felt mad. 288 00:16:12,840 --> 00:16:16,520 I felt mad because they told me I was mad. 289 00:16:16,520 --> 00:16:20,160 Locked up and heavily medicated, 290 00:16:20,160 --> 00:16:23,200 I learned that the kinds of sounds I experience 291 00:16:23,200 --> 00:16:26,520 are thought to be part of a medical condition, 292 00:16:26,520 --> 00:16:27,960 a brain disorder. 293 00:16:28,840 --> 00:16:36,680 I learned to use the terms auditory hallucinations and delusions and psychosis. 294 00:16:36,680 --> 00:16:41,120 If I heard voices I was punished, 295 00:16:41,120 --> 00:16:44,920 thrown into solitary and forced to take more drugs. 296 00:16:44,920 --> 00:16:50,120 I was told that this would teach me how to manage my condition. 297 00:16:50,120 --> 00:16:54,760 The more they taught me, the more troubled I became. 298 00:16:54,760 --> 00:16:58,840 The sounds surged and turned cruel. 299 00:16:58,840 --> 00:17:01,280 I began to shake continuously. 300 00:17:01,280 --> 00:17:02,840 I forgot how to speak. 301 00:17:02,840 --> 00:17:05,160 I forgot how to stand. 302 00:17:05,160 --> 00:17:06,560 I forgot my name. 303 00:17:06,560 --> 00:17:11,720 What I remember from those early days on my first psych ward 304 00:17:11,720 --> 00:17:15,720 was how muddled we all were, staff included. 305 00:17:15,720 --> 00:17:19,800 No one could agree on what to call what was happening to me. 306 00:17:19,800 --> 00:17:24,680 Diagnoses seemed to be doled out at staff meetings by popular vote 307 00:17:24,680 --> 00:17:27,640 and different people and different roles in the hospital 308 00:17:27,640 --> 00:17:31,640 had wildly different attitudes about hearing voices. 309 00:17:31,640 --> 00:17:34,360 One day my psychiatrist confided, 310 00:17:34,360 --> 00:17:37,240 "I don't think you're psychotic, but the nurses do." 311 00:17:37,240 --> 00:17:41,400 At the time, I wondered why he'd tell me this. 312 00:17:41,400 --> 00:17:47,240 Why let on that no one could agree on the most basic element of a diagnosis? 313 00:17:48,600 --> 00:17:50,360 It didn't inspire confidence. 314 00:17:50,360 --> 00:17:55,000 I'd grown up in a devoutly Catholic community 315 00:17:55,000 --> 00:17:57,880 far from the clinical language of psychiatry. 316 00:17:57,880 --> 00:18:00,760 It was good and evil that shaped our days. 317 00:18:00,760 --> 00:18:03,640 On the ward, no one talked of good and evil, 318 00:18:03,640 --> 00:18:07,320 but the diagnosis debates felt strangely familiar. 319 00:18:07,320 --> 00:18:12,040 There seemed to be a lot hanging on this word psychosis. 320 00:18:12,040 --> 00:18:15,160 Not only my current treatment, 321 00:18:15,880 --> 00:18:22,840 but my future prospects, my life course, and even my value as a human being. 322 00:18:22,840 --> 00:18:30,200 Still, it was hard for me to care which word they settled on to describe my mind. 323 00:18:30,200 --> 00:18:33,400 I was young and frightened and locked up. 324 00:18:33,400 --> 00:18:35,640 I wanted to go back to school. 325 00:18:35,640 --> 00:18:38,360 I wanted to finish my French paper. 326 00:18:38,360 --> 00:18:41,000 I wanted my parents approval. 327 00:18:41,000 --> 00:18:43,320 I wanted somebody to love me. 328 00:18:44,440 --> 00:18:47,480 Which word I wondered gets me out of here? 329 00:18:47,480 --> 00:18:53,240 Heartbreaking and so familiar. 330 00:18:53,240 --> 00:19:01,320 It's always just, it happens so often, but it's always just so shocking to hear that, 331 00:19:01,320 --> 00:19:05,000 "Oh, I was hearing voices and then they locked me up. 332 00:19:05,000 --> 00:19:08,920 There was no space for what's the experience about, 333 00:19:08,920 --> 00:19:13,080 or is it a problem, or maybe it's okay to live with voices, or where do they come from, 334 00:19:13,080 --> 00:19:17,080 or anything like that, just grab you." 335 00:19:17,080 --> 00:19:21,800 So you stopped hearing the voice of Jesus. 336 00:19:21,800 --> 00:19:24,600 You stopped having these visions when your brother died. 337 00:19:24,600 --> 00:19:29,560 And then three years later, you start just hearing sounds and all kinds of different things. 338 00:19:29,560 --> 00:19:34,040 And then your friend at school just innocently says, "Oh, go to the clinic." 339 00:19:34,040 --> 00:19:34,600 We didn't know. 340 00:19:34,600 --> 00:19:37,800 But were you stopping going to classes? 341 00:19:37,800 --> 00:19:39,640 Were you kind of acting weird? 342 00:19:39,640 --> 00:19:42,120 Were you telling people you wanted to kill yourself? 343 00:19:42,120 --> 00:19:47,240 Or was there any other thing going on that seemed distressing to people or to you? 344 00:19:47,240 --> 00:19:53,560 Well, the funny thing is both things were, I was actually doing really well in school that year. 345 00:19:53,560 --> 00:19:55,160 You did well in school. 346 00:19:55,160 --> 00:19:59,160 But I was really struggling because you know, some girl had dumped me. 347 00:19:59,160 --> 00:20:03,640 She broke my heart in the most devastating way by telling me she wasn't really gay, 348 00:20:03,640 --> 00:20:05,160 and that I was kind of a pervert. 349 00:20:05,160 --> 00:20:06,680 And I was a mess. 350 00:20:06,680 --> 00:20:10,360 And they just, my friend found me the day after I got dumped. 351 00:20:10,360 --> 00:20:18,200 You know, I'd been up all night as high school, as college kids are just crying and devastated and messed up. 352 00:20:18,200 --> 00:20:26,120 And I was talking to one of the sounds that I found very soothing, very stabilizing. 353 00:20:26,120 --> 00:20:33,000 And so I felt like there was sort of a confusion between distress and voices. 354 00:20:33,000 --> 00:20:39,480 Yeah, you were distressed for very ordinary, normal. 355 00:20:39,880 --> 00:20:47,720 You had this breakup that was sounds terrible or this rejection that sounds really terrible. 356 00:20:47,720 --> 00:20:50,680 And that would be interesting. 357 00:20:50,680 --> 00:20:54,360 What was there some kind of stress or some kind of, do you think that there was a direct? 358 00:20:54,360 --> 00:20:58,520 Did the voices come when the breakup, the rejection happened? 359 00:20:58,520 --> 00:20:59,880 Or was it where they before? 360 00:20:59,880 --> 00:21:04,760 Do you think it was the stress of that experience that kind of brought on all these new sounds and everything? 361 00:21:05,640 --> 00:21:13,000 Well, the voices had really started three years before when I was a freshman in college. 362 00:21:13,000 --> 00:21:22,920 And I really think it was probably the destabilization of being away from home, 363 00:21:22,920 --> 00:21:28,200 away from the only reference point I had for my brother and his life. 364 00:21:28,200 --> 00:21:34,680 For the first time, I was meeting people who didn't know I had a brother. 365 00:21:34,680 --> 00:21:38,200 I mean, because in the small community where I lived, I was the girl whose brother died. 366 00:21:38,200 --> 00:21:43,880 And it was so confusing and destabilizing, everything had been flipped. 367 00:21:43,880 --> 00:21:53,480 Atheism was cool being somebody who had, who felt badly about losing their faith was strange. 368 00:21:53,480 --> 00:22:03,400 And within that, with everything being new, I think the sounds came back, but they were very different. 369 00:22:03,800 --> 00:22:11,560 Yes, I had been living with it going through different stressful things. 370 00:22:11,560 --> 00:22:15,640 And sometimes it was helpful, sometimes it was strange. 371 00:22:15,640 --> 00:22:19,080 I just thought it was just what happened to people. 372 00:22:19,080 --> 00:22:21,160 But I just got caught then. 373 00:22:21,160 --> 00:22:25,400 I'm sure that at any point in those three years, somebody could have found me at a certain moment 374 00:22:25,400 --> 00:22:27,240 and been like, you seem really weird. 375 00:22:27,880 --> 00:22:32,280 And said, and walked me over to psych services or something. 376 00:22:32,280 --> 00:22:35,960 That's when I got caught and put away. 377 00:22:35,960 --> 00:22:44,600 How did your self-image and self-understanding change after that first hospitalization experience? 378 00:22:44,600 --> 00:22:48,440 You know, it absolutely shattered me. 379 00:22:48,440 --> 00:22:50,360 It did change the course of my life. 380 00:22:50,360 --> 00:22:57,720 It was the most violent place I'd been in my life having lived in some ways a very sheltered 381 00:22:57,720 --> 00:23:02,920 life I was stunned by the amount of violence I witnessed and experienced. 382 00:23:02,920 --> 00:23:12,760 And what was interesting is their goal seemed to be to stop the voices, to suppress the voices, 383 00:23:12,760 --> 00:23:13,480 to end that. 384 00:23:13,480 --> 00:23:17,320 And I really think in a certain way, instead of that, they kind of ended me. 385 00:23:17,320 --> 00:23:24,840 Because before that hospitalization, I hadn't really even thought of them as voices. 386 00:23:24,840 --> 00:23:33,560 It was just, I didn't need to give them a label because it was all just an organic part of my mind. 387 00:23:33,560 --> 00:23:40,920 And after that, I experienced for the first time just completely disappearing. 388 00:23:40,920 --> 00:23:43,320 What some people call a dissociative disorder. 389 00:23:43,320 --> 00:23:48,920 So I couldn't stay present for very long when the voice has started. 390 00:23:49,480 --> 00:23:55,960 So for years then, I just would disappear. I would just lose time in place. 391 00:23:55,960 --> 00:23:57,480 I struggled mightily. 392 00:23:57,480 --> 00:24:01,240 My goal every day was to try to look normal, to try to look sane, 393 00:24:01,240 --> 00:24:08,440 to stay out of the hospital, which I did go back in a number of times, 394 00:24:08,440 --> 00:24:11,240 but I'd often succeeded in hiding and staying out. 395 00:24:12,760 --> 00:24:21,240 And it sounds like the voices were not cruel until you went into the psychiatric hospital. 396 00:24:21,240 --> 00:24:26,040 Is that right? The voices themselves changed the sounds and everything you were hearing changed 397 00:24:26,040 --> 00:24:29,320 and became darker. Because that's something that I hear from a lot of people. 398 00:24:29,320 --> 00:24:30,920 Is that was that your experience? 399 00:24:30,920 --> 00:24:32,200 That's absolutely true. 400 00:24:32,200 --> 00:24:38,760 The voices transformed then. They became terrifying. 401 00:24:38,760 --> 00:24:46,440 And they became a little bit of taking on the condemnation I heard in the hospital and the surveillance I heard 402 00:24:46,440 --> 00:24:49,640 trying to control me after that. 403 00:24:49,640 --> 00:24:55,000 Before that, they were a hodgepodge of exquisite experiences and strange experiences. 404 00:24:55,000 --> 00:24:58,600 Sometimes frightening, but just a mix. 405 00:24:58,600 --> 00:25:02,760 And so yeah, why do you think they transformed? 406 00:25:02,760 --> 00:25:05,400 What do you think made that change happen? 407 00:25:05,400 --> 00:25:09,560 If you were to speculate or guess, I bet you don't really know. 408 00:25:09,560 --> 00:25:09,800 But 409 00:25:09,800 --> 00:25:17,240 Well, I think voices, even though it's people see this or what makes them 410 00:25:17,240 --> 00:25:22,600 called hearing voices or unique, is their usually an individual experience. 411 00:25:22,600 --> 00:25:28,600 One person is having this experience and other people are not having the same experience. 412 00:25:28,600 --> 00:25:33,160 But at the same time, I think voices are very communal and connected. 413 00:25:33,160 --> 00:25:36,360 They respond to the world around them. 414 00:25:36,360 --> 00:25:44,040 Their echoes of what we're being told is we are or the world is. 415 00:25:44,040 --> 00:25:50,760 They're deeply, I feel like they're deeply connected to either the present world or our ancestry 416 00:25:50,760 --> 00:25:55,320 or our past or our community or our spirits. 417 00:25:55,320 --> 00:26:01,000 So your present world change is suddenly you're in this, you're in the most violent experience 418 00:26:01,000 --> 00:26:08,840 you've ever had, things go just terribly bad in your life and then the voices respond. 419 00:26:08,840 --> 00:26:20,120 Yes, yes. When I was in the hospital, I had a beloved voice that I called the kind one. 420 00:26:20,120 --> 00:26:23,960 She also, her name was Beth. 421 00:26:23,960 --> 00:26:27,480 And Beth died when I was in the hospital. 422 00:26:27,480 --> 00:26:33,640 It is honestly one of the most devastating things that happened to me in my life is 423 00:26:33,640 --> 00:26:39,400 as I saw her die. And it really every day in the hospital, they were 424 00:26:39,400 --> 00:26:45,400 trying to get, were angry with me if I ever engaged with the voices. 425 00:26:45,400 --> 00:26:52,280 And they threatened me, you will never get out of here if you don't stop engaging with voices. 426 00:26:54,760 --> 00:27:03,160 And then I lost the most exquisite experience of voice hearing I've had while in the hospital. 427 00:27:03,160 --> 00:27:12,760 And everything that was left, that hodgepodge turned dark and mimicked what I'd heard in the hospital. 428 00:27:12,760 --> 00:27:15,960 But what, there's something wrong with me, I need to be quiet about it. 429 00:27:15,960 --> 00:27:19,880 I need to stay in the house. All that. 430 00:27:21,480 --> 00:27:26,040 And so Beth was this really positive, comforting, supportive presence. 431 00:27:26,040 --> 00:27:30,200 What were some other experiences that you were having was kind of turned dark. 432 00:27:30,200 --> 00:27:34,760 He said there was exquisite and wonderful and mysterious and strange. 433 00:27:34,760 --> 00:27:46,760 Well, those were mostly a voice maybe they had a presence or a personality that was Beth. 434 00:27:46,760 --> 00:27:53,960 But there was also times when it felt that the wind turned from wind to 435 00:27:53,960 --> 00:27:59,880 hands. The trees became hands or something or sometimes the grass would rise up and start 436 00:27:59,880 --> 00:28:08,280 rearranging itself or singing. And the world around just felt, it felt more animated. 437 00:28:08,280 --> 00:28:15,240 The natural world just felt like a place I could walk into and be accompanied. 438 00:28:16,280 --> 00:28:21,080 And connect with so many what we think of as inanimate objects. 439 00:28:21,080 --> 00:28:25,720 Yeah, what you're describing it, even the phrase hearing voices, we're kind of stuck with this phrase. 440 00:28:25,720 --> 00:28:30,200 What we're describing is way beyond. It's more about a presence. It's almost like an altered state 441 00:28:30,200 --> 00:28:37,160 or like a different dimension of reality of just things like shift and become magical and much more 442 00:28:37,160 --> 00:28:42,600 alive and vibrant and kind of reduce it down to, are you hearing a voice? Do you have 443 00:28:42,600 --> 00:28:47,560 auditory hallucinations? Really not really getting at what's happened at all? 444 00:28:47,560 --> 00:28:55,960 Absolutely. Well, I completely agree. I mean, I know hearing voices is an embracing term that 445 00:28:55,960 --> 00:29:01,720 includes all of that. But of course, the poverty of our language leaves us without a simple term to 446 00:29:01,720 --> 00:29:09,720 describe the multi-sensory complexity of it. Yeah. I like the phrase voices and visions. When we did 447 00:29:09,720 --> 00:29:14,680 our support group in Portland, we called it the voices and visions support group. We didn't call it 448 00:29:14,680 --> 00:29:21,240 hearing voices. But that is the official approach of the hearing voices network because it is not just 449 00:29:21,240 --> 00:29:26,520 things you hear auditory. It's the whole range. Absolutely. 450 00:29:26,520 --> 00:29:32,840 It just has me thinking about this time when I had cold turkeyed off of lithium, 451 00:29:32,840 --> 00:29:37,160 which I don't recommend to people, cold turkey, off lithium. 452 00:29:37,160 --> 00:29:44,040 That's the official Madness radio position we don't recommend cold turkeyed off of lithium. 453 00:29:44,040 --> 00:29:47,720 Don't I'm kind of bracing myself or what's coming next? Whenever somebody says, 454 00:29:47,720 --> 00:29:52,520 well, I called turkeyed off of lithium and then I've braced myself for what's coming. 455 00:29:52,520 --> 00:30:02,440 What happened initially before I kind of took a darker turn was that everything came more alive. 456 00:30:02,440 --> 00:30:09,000 I had this experience of these ferns on this hillside singing to me when you were talking about the 457 00:30:09,000 --> 00:30:14,200 grass having voices. I had this experience of this. I wrote about it in a poem as a choir of ferns 458 00:30:14,200 --> 00:30:21,160 at my knees. Just like everything was extra alive. There was this chain link fence that was breathing 459 00:30:21,160 --> 00:30:28,840 light. I had to stop in the middle of Manhattan to just take in how alive this chain link fence was. 460 00:30:29,800 --> 00:30:38,040 There was just this extra animation to everything that was way more complex than just hearing a voice. 461 00:30:38,040 --> 00:30:45,080 I don't know. I still don't quite know what to make of it. It was very powerful. It was also coupled 462 00:30:45,080 --> 00:30:53,480 with a lot of anxiety of like, "And does this mean that I'm losing my mind?" Because everybody 463 00:30:53,480 --> 00:30:58,440 else was very freaked out by my behavior. Even people who are good friends and not like 464 00:30:58,440 --> 00:31:05,640 oppressive psych doctors, regular people were like, "I'm not quite sure what to do with the fact 465 00:31:05,640 --> 00:31:10,600 that you're talking to the chain link fence. I don't really know how to integrate that or what we need 466 00:31:10,600 --> 00:31:17,160 to keep you safe. I don't know about for you, but for me, sometimes those kinds of states have felt 467 00:31:17,160 --> 00:31:23,160 something that I can integrate into daily life. Sometimes they really haven't. Sometimes they 468 00:31:23,160 --> 00:31:30,840 felt like they really take me out of daily life into a zone where I'm having a great time with the 469 00:31:30,840 --> 00:31:36,680 ferns. We're having a great relationship, but I can't actually relate to other people. I'm not able 470 00:31:36,680 --> 00:31:45,960 to do consensus reality if I need to. That slippery space of like, but I do want to be able to interact 471 00:31:45,960 --> 00:31:52,600 with consensus reality here. I don't want to just like, medicate and kill and squelch. 472 00:31:53,400 --> 00:32:02,680 All of this richness. I need to get up and go to work. What do I do? I don't have answers here. 473 00:32:02,680 --> 00:32:08,280 It's an area of inquiry that is still open for me, but hearing you talk about those pieces just 474 00:32:08,280 --> 00:32:16,680 brought that up for me. I'm really glad you talked about that, Jack. I really appreciate it whenever 475 00:32:16,680 --> 00:32:24,360 anyone shares their voice hearing experiences because I feel kind of mad. I feel excited to know about 476 00:32:24,360 --> 00:32:32,920 the variety of them. I feel both the sort of inexplicable part and the part that's just already 477 00:32:32,920 --> 00:32:39,800 kind of understood between voice errors. Yeah, it's interesting to think about what's different now, 478 00:32:39,800 --> 00:32:47,640 what's the same thing because I have these experiences where things start to all these connections, 479 00:32:47,640 --> 00:32:51,880 start to get being made and they're all these synchronicities. Then there are these grand 480 00:32:51,880 --> 00:32:57,000 sort of narratives that come in. In the past, they've been more like, I'll immediately go to the 481 00:32:57,000 --> 00:33:03,480 paranoid. I'm in danger. Someone is trying. I don't like the word paranoid, but things are not safe. 482 00:33:03,480 --> 00:33:12,520 It's interesting because the Alive also is kind of like rushing or like this connectedness. There's 483 00:33:12,520 --> 00:33:18,440 something like electrical or something that's maybe more embodied, but it often feels panicky. 484 00:33:18,440 --> 00:33:24,680 I'm just remembering an experience that I had. It was in North Hampton because I was doing a lot of 485 00:33:24,680 --> 00:33:30,520 volunteering with the radio station, Valley Free Radio. I would go through these periods where I 486 00:33:30,520 --> 00:33:35,560 was able to go out and be connected. I wasn't working full time. I was working part time. Then I would 487 00:33:35,560 --> 00:33:40,760 just have these shocking things that would just like I would just rush back into my. I remember being 488 00:33:40,760 --> 00:33:46,680 in a meeting. I remember now that there were a lot of conflict going along at this meeting. 489 00:33:46,680 --> 00:33:51,960 But suddenly, both of the people that were facilitating, they both had similar kinds of shirts and then 490 00:33:51,960 --> 00:33:57,000 someone said something that was connected to something that somebody had said before. I completely 491 00:33:57,000 --> 00:34:03,400 felt super exposed and super like. At that moment, I knew I was in a lot of dangers. I had to get out. 492 00:34:03,400 --> 00:34:08,840 I did. I got out. I disengaged. Then I dropped out of the scene. Now, I think the difference is 493 00:34:08,840 --> 00:34:16,280 that something happens in my body where I start to panic, but it's almost like the panic is familiar. 494 00:34:16,280 --> 00:34:21,800 I'm able to do things like I'm able to notice my breathing and become more grounded and reassure 495 00:34:21,800 --> 00:34:28,520 myself and then connect myself with spiritual presences that I have in my life that I know are there 496 00:34:28,520 --> 00:34:37,080 that are always with me. I'm able to manage it so that it doesn't start to accelerate too much 497 00:34:37,080 --> 00:34:43,320 in my own body. It took me a long time to start to learn how to do that. There's all these different 498 00:34:43,320 --> 00:34:48,680 things that are connected to that. Like, X-Fives and having people to talk to. But a lot of it was just 499 00:34:48,680 --> 00:34:54,520 having the time to happen over and over again. I would just start to get practiced. I would start to 500 00:34:54,520 --> 00:35:00,680 learn what works and what doesn't work. I'm grateful, Jack, you said about working. I'm grateful. I was 501 00:35:00,680 --> 00:35:07,640 on disability for 15 years, which was often gotten off of it sooner. I didn't have the supports to be 502 00:35:07,640 --> 00:35:12,760 able to get off of it. It kind of became something of a trap. But I am grateful that I had that sort of 503 00:35:12,760 --> 00:35:17,640 breathing space where I could just do a trial and error process of like, okay, go out into the world, 504 00:35:17,640 --> 00:35:24,120 panic, retreat, and then eventually try and go back out in the world again. And at this time, 505 00:35:24,120 --> 00:35:30,040 take maybe those connections and that huge conspiracy is actually part of a more benign narrative. 506 00:35:30,040 --> 00:35:36,200 Maybe there's something more positive in the connections that I'm making. But you're bringing back 507 00:35:36,200 --> 00:35:43,160 my memories of Northampton, Allison. You know, I can absolutely relate to that story so much. I mean, 508 00:35:43,160 --> 00:35:49,080 it's sort of the process I'm in now having found other tools besides being totally freaked out and 509 00:35:49,080 --> 00:35:58,600 taking more meds of practicing trying to be present with the experience instead of jumping to, 510 00:35:58,600 --> 00:36:05,400 this is a huge problem. And you know. Yeah, you're a lot of meditation. I started to do the 10-day 511 00:36:05,960 --> 00:36:13,880 Vipassana retreats. Oh, yeah. I really took the belief and the experience that things pass and they 512 00:36:13,880 --> 00:36:20,040 change and just stay with it. It's just like the weather. It'll change eventually if you stay with it, 513 00:36:20,040 --> 00:36:27,160 which is a huge, it's a huge lesson to kind of teach your nervous system. Oh, I love hearing that 514 00:36:27,160 --> 00:36:33,720 because I'm in the process now. It's been really rich of meditating, of not jumping to conclusions 515 00:36:33,720 --> 00:36:43,560 about what this is. Stay with it. Lean into it. I would say that at this point, I have managed 516 00:36:43,560 --> 00:36:51,880 with meditation when I am experiencing really intense voices and visions to be able to say, 517 00:36:51,880 --> 00:36:58,440 sometimes I have to say it aloud, I'm here to sort of stay embodied. Yeah, yeah, yeah. 518 00:36:59,240 --> 00:37:03,400 And then I was just saying, I was just just you're making me think just the other day I had to talk my 519 00:37:03,400 --> 00:37:09,000 through, I'm afraid. I'm afraid. I'm afraid. Oh, this is what happened. I'm terrified right now. Oh, 520 00:37:09,000 --> 00:37:13,960 that's what's going on. I don't have to think about my friends to happen or I don't have to spin out 521 00:37:13,960 --> 00:37:17,960 on all these different. I can just stay with the emotion. Yeah. And Jackson, you're also someone who's 522 00:37:17,960 --> 00:37:23,400 practiced a lot of meditation to help you with your experiences. Yeah. I am. Although I actually have 523 00:37:23,400 --> 00:37:29,960 an experience at one point of going to live at a meditation center, like I was practicing a lot 524 00:37:29,960 --> 00:37:38,680 of fucking meditation. And I'm bracing my self because of my, what's happened next? I just had a really 525 00:37:38,680 --> 00:37:44,760 huge amount of unresolved trauma at that time. It was a year after my mom had died in this really brutal 526 00:37:44,760 --> 00:37:54,280 and awful way that I witnessed. And for me, the sitting in silence actually became really bad 527 00:37:54,280 --> 00:38:01,320 because I started having all these flashbacks and the staff at the meditation center weren't equipped 528 00:38:01,320 --> 00:38:08,200 to handle someone who was like having a lot of flashbacks and kind of unraveling. And I ended up 529 00:38:08,200 --> 00:38:14,040 leaving. I ended up leaving. Not because they made me like it was my choice to leave. And feeling like 530 00:38:14,040 --> 00:38:20,440 I needed to pursue different paths. And that's what eventually took me into semantics, which for me 531 00:38:20,440 --> 00:38:30,280 has felt like a more embodied way to bring awareness and bring like mind, body, connection, and 532 00:38:30,280 --> 00:38:36,120 to build up my sematic awareness, but with tools that are grounded in trauma awareness, 533 00:38:36,120 --> 00:38:42,760 so that I don't have a bunch of flashbacks and flood. And these days now I can meditate again. And I do, 534 00:38:42,760 --> 00:38:47,560 but usually for much shorter periods of time, I'll meditate for like 15 minutes or 10 minutes. 535 00:38:47,560 --> 00:38:54,440 Because I found that doing the really extended kind of retreats, it just didn't work with my trauma. 536 00:38:54,440 --> 00:39:01,720 I'm really glad that you're talking about that, Jacks, because I would say it's been a winding road 537 00:39:01,720 --> 00:39:06,840 for me and that there's a lot of meditation communities that freak out with voice errors 538 00:39:07,480 --> 00:39:14,520 and get a little uncomfortable. And yet they have, you know, meditation has a framework for thinking 539 00:39:14,520 --> 00:39:21,480 about it, which is spiritual emergency, but that I myself have been at points in meditation where I 540 00:39:21,480 --> 00:39:28,040 have had experienced in retrospect what I see were really deep or meaningful voices and visions. 541 00:39:28,040 --> 00:39:33,720 But at the time we're just absolutely terrifying. And I just walked away from meditation being like, 542 00:39:33,720 --> 00:39:40,680 "Well, I'm not doing that again. I'm not doing that again." And I couldn't find a rational part of myself 543 00:39:40,680 --> 00:39:49,640 to take a breath. Because I did not want to look at that. And it was really, meditation is no joke. 544 00:39:49,640 --> 00:39:56,600 And I don't want all voice errors to think, "Oh, this is what you have to do, or this is the way to do it, 545 00:39:56,600 --> 00:40:02,680 or if you can't do it, then you're not tough enough. It's just one thing. Some of us try, and most of us 546 00:40:02,680 --> 00:40:08,360 end up a little tangled in it sometimes." I mean, I think it's just sometimes it's a question of just 547 00:40:08,360 --> 00:40:13,400 like what's the framework of support that you have around you, you know, because meditation 548 00:40:13,400 --> 00:40:20,600 can create space to be with all your stuff. And if your stuff, you know, like I just used to think 549 00:40:20,600 --> 00:40:26,280 about it at that time in my life as like that meditation kind of opened Pandora's box. And it wasn't 550 00:40:26,280 --> 00:40:31,880 meant meditation's fault. Like Pandora's box was there, had nothing to do with meditation practice, you know, 551 00:40:31,880 --> 00:40:38,440 like I had all my demons and all my things, you know, absolutely not meditation's fault. But 552 00:40:38,440 --> 00:40:44,760 meditation did kind of take that lid off. And then the meditation community wasn't prepared to 553 00:40:44,760 --> 00:40:51,320 help with the demons, you know, that came out. And so now I'm a lot more thoughtful of just like, 554 00:40:51,320 --> 00:40:59,000 what do I want to open that, you know, Pandora's box and wearing with who? Yeah, don't dive into a 10-day 555 00:40:59,000 --> 00:41:05,320 silent meditation retreat if you haven't had some experiences just more small and gradual to see 556 00:41:05,320 --> 00:41:13,240 whether it's right for you, whether it's helpful. That's kind of a big theme is one size fits all. 557 00:41:13,240 --> 00:41:17,880 Everyone should do this. I'm losing touch with individual experience because everybody has a 558 00:41:17,880 --> 00:41:23,560 different path and they have to be accompanied on it rather than just told this is the right way or 559 00:41:23,560 --> 00:41:29,400 this is the wrong way and then put into a box that way. I think that's a lot of the misunderstanding. 560 00:41:29,400 --> 00:41:34,520 I think of the hearing voices movement is that it's a certain prescription of voices are caused by 561 00:41:34,520 --> 00:41:40,840 trauma or voices. The solution to voices is talking about it in a group. I mean, I don't want to go 562 00:41:40,840 --> 00:41:45,560 to. It's less support groups that really have had bad experiences in support groups. So the one 563 00:41:45,560 --> 00:41:51,720 size fits all. The positive side of it has always been for me the idea of respecting the diversity of 564 00:41:51,720 --> 00:41:58,840 different perspectives and then facilitating your, if the group gets too strong on meditation, meditation, 565 00:41:58,840 --> 00:42:03,800 meditation, you might want to speak up and say, well, actually, here's a negative experience about 566 00:42:03,800 --> 00:42:11,560 meditation. So we kind of have a more full picture of the diversity and then ultimately it comes back 567 00:42:11,560 --> 00:42:17,320 to the individual finding their own path, which brings us back to the question that Jack's you had 568 00:42:17,320 --> 00:42:23,960 said before. You want to raise, do that question again. I think it's sure. Or we can keep going on 569 00:42:23,960 --> 00:42:27,960 this track, but it might be good to get back because chronology is a friend. Chronology is a friend. 570 00:42:27,960 --> 00:42:38,040 Yeah, so my question was just wondering about how you got from the really stigmatizing and 571 00:42:38,040 --> 00:42:44,520 pathologizing experiences of what it is to have voices, like how you got from that psychiatric 572 00:42:44,520 --> 00:42:49,240 framework to the framework that you're at now, which I don't entirely know what that is, but I'm 573 00:42:49,240 --> 00:42:54,680 pretty sure that it's a less pathologizing way of viewing and meeting your own experiences. 574 00:42:54,680 --> 00:43:03,400 Well, it was 2016 and I had just come out of another really devastating hospitalization experience 575 00:43:03,400 --> 00:43:13,080 on a psych ward and I was really at Whitsend and as one sometimes does when they're at Whitsend, 576 00:43:13,080 --> 00:43:20,600 they spend their insomniac nights googling things, they really shouldn't Google. So I was desperate 577 00:43:20,600 --> 00:43:27,880 for an answer and kept writing in to Google, what do I do about in the name of all the different 578 00:43:27,880 --> 00:43:34,760 diagnoses I've been given? And of course you do that, you get all the same kinds of answers. So 579 00:43:34,760 --> 00:43:42,680 of course then I figured out if you want a different answer, you got to ask a different question. 580 00:43:42,680 --> 00:43:52,600 And I wrote in just what do I do about the voices and weighed down on the answer of search engine 581 00:43:52,600 --> 00:44:04,600 answer was this notice for a talk that was called what can we learn from voice hearers? Every part of 582 00:44:04,600 --> 00:44:11,720 this seemed weird to me. I really hadn't heard the phrase voice hearer before and the idea that it would 583 00:44:11,720 --> 00:44:20,440 learn something from somebody who had his severe mental illness, which is what I considered I had, 584 00:44:20,440 --> 00:44:27,400 seemed strange to me, but I was desperate enough that I got up the courage to I lived in New York 585 00:44:27,400 --> 00:44:34,600 City to get on the subway and go to the Carl Young Center on the Upper East Side where I'd never been 586 00:44:34,600 --> 00:44:44,280 before and to sit in a small lecture hall and stare up at a rather professional looking woman with 587 00:44:44,280 --> 00:44:52,280 shiny hair from who's just in from London wearing a gray suit, having a PowerPoint and it turned out 588 00:44:52,280 --> 00:45:00,200 she was a voice hearer. She was Jackie Dillan, the then president of Hearing Voices Network in London, 589 00:45:00,200 --> 00:45:07,160 who's a pretty charismatic speaker, but everything about it was I was quite innocent, was new to me. 590 00:45:07,160 --> 00:45:14,120 I it took me a few minutes in before I realized oh she's a crazy person just like me and 591 00:45:14,120 --> 00:45:21,000 they're just all sitting here listening. Just listening to her and the story she told even though 592 00:45:21,000 --> 00:45:27,800 all our stories are different there's certain themes to them how how you're she called it sectioned 593 00:45:27,800 --> 00:45:39,640 or committed and how you're not seen or met and and I I was stunned. I was sort of flooded with 594 00:45:39,640 --> 00:45:47,560 excitement and grief grief for everything I had lost and excitement that there was 595 00:45:47,560 --> 00:45:54,680 this engaging new way of looking at things and I just went down the rabbit hole. I just started 596 00:45:54,680 --> 00:46:02,760 going to Hearing Voices groups but also just going to you know once you start that then you're on a 597 00:46:02,760 --> 00:46:09,080 different track with Google and everything and you find a lot of different alternative workshops, 598 00:46:09,080 --> 00:46:16,040 lectures, seminars, conferences and I just would go to everything because in a weird way it was the 599 00:46:16,040 --> 00:46:21,560 most healing experience I had in my life to just sit in a room with a bunch of people who had a 600 00:46:21,560 --> 00:46:28,040 different way of thinking about stuff and as Will said everybody had a sort of different way. You 601 00:46:28,040 --> 00:46:35,880 didn't have to have the exact same idea. There were multiple frameworks in every room. 602 00:46:37,400 --> 00:46:45,640 It was that was the most exciting thing for me too was was just practicing allowing a room full of 603 00:46:45,640 --> 00:46:53,240 people with really different ideas about voices and visions to connect. You can have different ideas 604 00:46:53,240 --> 00:46:57,960 and still profoundly connect and I think it was that connection I needed. 605 00:46:57,960 --> 00:47:06,040 Yeah I get asked what is it about the Hearing Voices approach that's different than standard 606 00:47:06,040 --> 00:47:11,160 treatment and what is it that people need and people they want a prescription they want like okay 607 00:47:11,160 --> 00:47:17,960 here's what you do xy z and so many of us it's just it's just connecting just find the others connect 608 00:47:17,960 --> 00:47:23,400 with other people overcome isolation. I mean that was the huge turning point for me in North Hampton 609 00:47:23,400 --> 00:47:28,680 is that I had been you know trying to put it all behind me because that sounded like what it was 610 00:47:28,680 --> 00:47:35,240 the way forward was just to move on but then I had to go back to that or talk with other people who 611 00:47:35,240 --> 00:47:41,160 had similar experiences and and that was really when it started to turn around because I had so much 612 00:47:41,160 --> 00:47:47,400 the experiences themselves weren't really the problem for me it was what I did with them that I ran 613 00:47:47,400 --> 00:47:56,040 away and I became isolated I did all of my all the trauma response being so in danger that I would 614 00:47:56,040 --> 00:48:01,000 isolate which I learned in my family which was helpful in my family because there was no other 615 00:48:01,560 --> 00:48:09,080 resource but it became really a trap and I was able to to really break out of that slowly gradually 616 00:48:09,080 --> 00:48:14,440 and it was the friendships it's one of the reasons we created mad camp if two people become friends 617 00:48:14,440 --> 00:48:18,760 at mad camp then it's like it's complete success it's totally worth it if someone finds somebody else 618 00:48:18,760 --> 00:48:24,280 at mad camp and I think that's really kind of the key lesson from it because if you look at 619 00:48:24,280 --> 00:48:31,400 psychiatry it's all about isolation and disconnection and separating you from your community and then 620 00:48:31,400 --> 00:48:35,160 I know I was trying to find somebody I had met in the hospital there's no way they're going to help 621 00:48:35,160 --> 00:48:41,720 you find your friend from all the confidentiality and hip-a that's such a BS you could just contact my friend 622 00:48:41,720 --> 00:48:47,000 and then ask them if they want to be connected with me I mean it's just they have no understanding of 623 00:48:47,000 --> 00:48:53,720 the importance of connection and community speaking of mad camp when we were in mad camp you I mean 624 00:48:53,720 --> 00:48:58,200 you read a really phenomenal story good story and I know I'm going to have to believe that out 625 00:48:58,200 --> 00:49:03,640 or something do you want to because I just brought down the house it was a it was one of our many open 626 00:49:03,640 --> 00:49:10,280 Mike experiences and you read it and it was I mean it just gave me it it brought back so much of 627 00:49:10,280 --> 00:49:15,640 all the different experiences that so many of us have had in hospitals that you had to just be there 628 00:49:15,640 --> 00:49:21,400 or else you wouldn't believe it's such a completely over-the-top you know crazy kind of place to be not 629 00:49:21,400 --> 00:49:26,040 in the ways that you would think but in really how wonderful a lot of the people I mean I I meant 630 00:49:26,040 --> 00:49:32,920 some really wonderful people who were there in the same boat as at patients we did a lot of healing 631 00:49:32,920 --> 00:49:39,240 amongst each other after the groups and after the doctors and nurses and social workers have left 632 00:49:39,240 --> 00:49:46,040 their room but you want to read that oh I think well I would it's true the best people some of 633 00:49:46,040 --> 00:49:53,480 the best people I've met I've met as fellow patients on psych wards and and so this is about some 634 00:49:53,480 --> 00:50:00,680 of them that I met early on and I used to have a different title but Will has given it the best title 635 00:50:00,680 --> 00:50:07,000 which is the DIT story what was the other title out I think it was see your title is better because it 636 00:50:07,000 --> 00:50:16,440 used to be called animals around you this story after Bobby spent the night in the rubber room 637 00:50:16,440 --> 00:50:22,920 things never really calm down on the ward Bobby and her nosy bossy way looked after us all 638 00:50:22,920 --> 00:50:30,120 and when she got tackled and roamed it threw everything off she'd never been roamed before smart and 639 00:50:30,120 --> 00:50:38,680 wily she could talk away out of anything but not this time it took days for the sedatives to wear off 640 00:50:38,680 --> 00:50:45,000 and meanwhile Bobby sat in a corner glassy eyed and drooling I didn't know she could be that still 641 00:50:45,000 --> 00:50:52,600 from then on it was just one thing after another all of us were on edge looking over our shoulders 642 00:50:52,920 --> 00:50:59,640 and the staff grew mean screaming fights broke out two or three times a day people were 643 00:50:59,640 --> 00:51:07,480 carted off hours later they'd return riding a wheelchair docile and strange the rubber room was 644 00:51:07,480 --> 00:51:15,960 no vacancy 24/7 when there was a backlog they'd restrained people and shoot them up on the floor in 645 00:51:15,960 --> 00:51:21,160 the common room others were restrained in place which was a fancy way of saying that they were 646 00:51:21,160 --> 00:51:29,640 strapped to their beds then came four new admits robbert a soft voiced man with a noisy case of 647 00:51:29,640 --> 00:51:37,560 Tourette's arrived first and then Eddie who was a sal putt at more MR than MI they'd run out of beds 648 00:51:37,560 --> 00:51:44,120 in the group homes Eddie had a thing for water he'd get a picture fill it at the sink in the kitchen 649 00:51:44,120 --> 00:51:50,280 at next to the nurses station and unload the contents wily nilly his favorite move 650 00:51:50,280 --> 00:51:56,920 sneaking into our rooms and pouring water in the dresser drawers there was not a dry item of 651 00:51:56,920 --> 00:52:04,440 clothing on the ward shirts and pants draped over every surface the place looked more like a 652 00:52:04,440 --> 00:52:10,760 lawn drette than a mental ward the nurses chased after Eddie begging him to hand over the 653 00:52:10,760 --> 00:52:16,680 pitcher but he was too quick for them Eddie roamed with Robert who caught the worst of it 654 00:52:16,680 --> 00:52:20,840 Robert spent most of his time in a jockey waiting for his clothes to dry 655 00:52:20,840 --> 00:52:27,400 next came a guy who slit his wrists he'd never been anywhere near the wards before 656 00:52:27,400 --> 00:52:34,760 sheepish and stunned his arms bandaged to the elbows he spent his time hanging around the 657 00:52:34,760 --> 00:52:43,080 nurses station casting horrified glances our way it was a momentary lapse he told the nurses 658 00:52:43,080 --> 00:52:51,240 i'll never do it again he pleaded and when can i get out of here he asked there was a 72 hour hold 659 00:52:51,240 --> 00:53:00,120 and so we were stuck with him Donna the last to arrive was obsessed with it she had a freezer 660 00:53:00,120 --> 00:53:06,680 full of it and wouldn't stop talking about it that sort of behavior got her some raised eyebrows 661 00:53:06,680 --> 00:53:13,880 and a rather troubling diagnosis but if you really listened to her sat down and took in her whole 662 00:53:13,880 --> 00:53:21,720 story it all fell into place it wasn't human shit in her freezer it was animal feces 663 00:53:21,720 --> 00:53:31,080 scat she was a tracker everybody thinks the tracker spend their time looking for paw prints in the 664 00:53:31,080 --> 00:53:39,800 dirt Donna explained but really we're looking for shit every species is different if you get to 665 00:53:39,800 --> 00:53:48,440 know it it's shape and color it's consistency and scent you can go a long way toward knowing 666 00:53:48,440 --> 00:53:55,640 what's going on with the animals around you Donna only kept the scat she couldn't identify 667 00:53:56,520 --> 00:54:03,000 it troubled her this mysterious shit she hated it she told me when she couldn't recognize 668 00:54:03,000 --> 00:54:10,680 and categorize feces at home when she couldn't sleep she take out one of the baggies of frozen shit 669 00:54:10,680 --> 00:54:17,880 and examine it all over again she'd go through her sketchbooks and her reference materials 670 00:54:17,880 --> 00:54:21,960 and try to unravel the mystery she rarely did 671 00:54:23,640 --> 00:54:31,640 some shit just does not want to be solved Donna told me and the ward with no scat to occupy her 672 00:54:31,640 --> 00:54:41,560 nights Donna was at a loss I preferred her shit talk to TV or pool or worst of all one on ones with 673 00:54:41,560 --> 00:54:49,480 my nurse on call so I sat in a corner most nights with Donna and listened as she mentally catalogged 674 00:54:49,480 --> 00:54:56,840 her freezer full of shit going over each baggy recounting when and where she'd collected it 675 00:54:56,840 --> 00:55:05,800 why it stumped her and running through her theories her species searches weighing the evidence 676 00:55:05,800 --> 00:55:13,160 one day during another all-ward meeting where they were telling us once again what a terrible bunch we 677 00:55:13,160 --> 00:55:20,440 were and how we'd better shape up or it would be vitamin H all around Donna pulled a leaf out of her 678 00:55:20,440 --> 00:55:27,880 field pack and handed it to Sal what am I supposed to do with this Sal asked Donna made a gesture 679 00:55:27,880 --> 00:55:36,520 pass it around she said to her she pointed at me so the leaf made its way around the circle 680 00:55:36,520 --> 00:55:43,560 till it was in my hands it was thick and dark with small even bite marks along the bottom 681 00:55:43,560 --> 00:55:51,400 you see the teeth marks Donna said eastern cotton tail tractor for half an hour 682 00:55:51,400 --> 00:55:55,240 I tried to get this shit but she moved too fast 683 00:55:55,240 --> 00:56:04,600 I kept that leaf for years long after that first hospitalization and the next and the next 684 00:56:05,160 --> 00:56:12,280 carrying it in bags and packs pouches and purses tucked in between the pages of books 685 00:56:12,280 --> 00:56:21,240 when I was nervous or feeling out of place which was all the time in those days I'd take out 686 00:56:21,240 --> 00:56:27,240 Donna's leaf and run my finger along the bitten edge where the cotton tail left her mark 687 00:56:27,240 --> 00:56:34,360 over and over I reached for that leaf till it grew hard and began to crumble 688 00:56:35,000 --> 00:56:42,040 and I knew if I wasn't careful I'd ruin it I put it in an envelope and I kept it in my desk 689 00:56:42,040 --> 00:56:49,240 one day I opened the desk drawer and took out the envelope but the leaf wasn't there anymore 690 00:56:49,240 --> 00:56:54,120 shriveled and desiccated it had turned dust 691 00:56:54,120 --> 00:57:03,400 it's such a powerful story and god I remember the weird sacred objects that you would come away with 692 00:57:03,960 --> 00:57:11,640 after a psych ward somehow and then like bring with you from house to house and very rarely look at 693 00:57:11,640 --> 00:57:18,920 but when you did have all kinds of twinges of like love yeah like what did I survive 694 00:57:18,920 --> 00:57:26,520 absolutely yeah I love the twist of the the fridge full of shriveled 695 00:57:29,000 --> 00:57:34,040 and you're just thinks it really is crazy and then like she's a tracker oh it's like it just 696 00:57:34,040 --> 00:57:41,320 immediately have this complete reversal of perspective on this person which is so instructive 697 00:57:41,320 --> 00:57:47,960 about how quickly our minds fraying things in certain ways thank you for reading that 698 00:57:47,960 --> 00:57:55,560 oh thank you so much I'm wondering something that you mentioned when we were emailing before 699 00:57:55,560 --> 00:58:01,720 the interview that you might be interested in talking about is when you heard Laura Dela knows first 700 00:58:01,720 --> 00:58:08,200 talk about coming off psych drugs oh yeah and I'm wondering if you'd be willing to tell us a little bit 701 00:58:08,200 --> 00:58:19,160 about that sure so that was back in the day when anything about any topic related to 702 00:58:21,320 --> 00:58:28,520 thinking more expansively about wellness mental health crazy people voices I was there 703 00:58:28,520 --> 00:58:36,680 at that back then Laura was doing workshops like that was a four-day workshop at a Holyoke community 704 00:58:36,680 --> 00:58:43,800 college so you would just go during the day you wouldn't stay overnight and and so I went with my notebook 705 00:58:45,240 --> 00:58:51,560 just wanting to be in a room full of people thinking expansively and openly but knowing deeply that I 706 00:58:51,560 --> 00:59:01,560 just I could never go off my drugs I was I had stepped away from a lot of traditional psychiatry I'd 707 00:59:01,560 --> 00:59:06,520 moved away from anti-psychotics but you know I still was under the care of a psychiatrist and I 708 00:59:06,520 --> 00:59:14,120 and I was told and I knew that I I've never go off my drugs it just wasn't as tragic but it wasn't 709 00:59:14,120 --> 00:59:22,680 possible so I just went to be with everyone and then of course Laura asks so many wonderful questions and 710 00:59:22,680 --> 00:59:30,840 we had so many breakout groups to really sort of look at not only why are we all alone with this 711 00:59:30,840 --> 00:59:38,360 but what was going on when we were told we had to go on these drugs and what did they mean to us 712 00:59:39,000 --> 00:59:45,720 and what do they mean to the people around us and all of these questions really broke something open 713 00:59:45,720 --> 00:59:52,120 in me and and then you know I had or I had been struggling for years with health problems related 714 00:59:52,120 --> 00:59:57,560 to the drugs which I just thought was the price you had to pay is a crazy person or it was like 715 00:59:57,560 --> 01:00:03,240 the ticket back to normal land you get to be with everybody else but you suffer so 716 01:00:04,840 --> 01:00:13,160 then Laura starts talking about safe tapering mechanisms and lay people who've been you know 717 01:00:13,160 --> 01:00:22,520 devotedly doing research around the world on topics that it seems like mainstream psychiatry at 718 01:00:22,520 --> 01:00:29,080 the time and drug companies weren't interested in which was I get off all these drugs that really we 719 01:00:29,080 --> 01:00:36,280 don't know what happens when people take them for so long and it was there that I found Will Hall's 720 01:00:36,280 --> 01:00:44,600 fantastic book about coming off of psychiatric drugs that I had for years it's a dog-eared copy 721 01:00:44,600 --> 01:00:52,040 and while I was there I started to realize what does it mean to be safe 722 01:00:55,080 --> 01:01:00,680 what is safe is it safe to stay on drugs that are making me chronically ill that I'm pretty sure 723 01:01:00,680 --> 01:01:06,840 aren't really doing anything to help me because they've never stopped any of the sounds or visions I 724 01:01:06,840 --> 01:01:14,840 I experienced or is this safer because Laura was laying out a really slow steady taper 725 01:01:14,840 --> 01:01:23,800 and also is it is it safer maybe to know yourself and to feel a little bit of engagement and agency 726 01:01:23,800 --> 01:01:31,320 in the process of what you're doing to try to manage your life and your feelings and your mind 727 01:01:31,320 --> 01:01:38,760 and I started to rethink what would be the safest thing for me and I walked away after those 728 01:01:38,760 --> 01:01:47,800 four days saying I think the safest thing for me to do would be to try a really slow taper of one 729 01:01:47,800 --> 01:01:56,280 of my drugs and in that time just really pay attention to what's going on for me what this whole story 730 01:01:56,280 --> 01:02:05,080 about the drugs meant what the messages are what messages I'd like to say instead and I thought for 731 01:02:05,080 --> 01:02:10,760 me the most important thing is I just don't your goal is not to be drug-free tada one day your goal 732 01:02:11,400 --> 01:02:20,200 is just to feel you have you're more empowered and more knowledgeable and that you have a role in this 733 01:02:20,200 --> 01:02:27,720 and so I just I started and and one of the things I also realized from taking that workshop is how 734 01:02:27,720 --> 01:02:38,120 much I'd been hiding who I was from my psychiatrist and it was really only hiding how motivated I am 735 01:02:38,840 --> 01:02:47,320 how many questions I have how many concerns I have you know I was afraid if I came forward with that 736 01:02:47,320 --> 01:02:52,280 I would get diagnosed with a lack of insight because I was saying what are we really wait what's 737 01:02:52,280 --> 01:02:58,440 happening here and so there was just this slight shift when I went back to see the psychiatrist if 738 01:02:58,440 --> 01:03:02,120 my first thought was like I better not tell her about Laura's workshop and then I took a breath and 739 01:03:02,120 --> 01:03:11,000 said well why wouldn't I tell her why wouldn't I honestly share an experience related to my mental 740 01:03:11,000 --> 01:03:19,240 health that felt really important to me why wouldn't I just invite her in this I did this cool thing 741 01:03:19,240 --> 01:03:25,400 I think it could help me it might help us she happened to be the kind of psychiatrist or the kind 742 01:03:25,400 --> 01:03:34,600 of person who was not receptive she was very negative about the whole idea about workshops like this 743 01:03:34,600 --> 01:03:40,600 she was also pretty negative about the idea of me going off drugs and said you can never go off your 744 01:03:40,600 --> 01:03:47,480 drugs but I had just been through this workshop and I had shifted enough to realize you know she 745 01:03:49,080 --> 01:03:56,440 she's just one person with one opinion and and I was able to think well that's a pretty harsh thing 746 01:03:56,440 --> 01:04:05,240 to say to somebody she didn't want to work with me I found in just a general GP nurse practitioner 747 01:04:05,240 --> 01:04:09,000 who's willing to prescribe drugs and I just said let's start and see what happens 748 01:04:09,000 --> 01:04:18,120 and in my case it just happened to be that I slowly ended up tapering off of all the drugs over two 749 01:04:18,120 --> 01:04:24,040 and a half years doesn't I mean as I said I wasn't goal oriented that that's what I had to be 750 01:04:24,040 --> 01:04:31,560 it's just how it worked out for me that that's what I learned I learned it's got it works better for me 751 01:04:31,560 --> 01:04:39,320 without this that's a really powerful story how are things different now that you're off the 752 01:04:39,320 --> 01:04:48,040 off the drugs so it's been about five years and to be honest there's a little 753 01:04:48,040 --> 01:04:58,040 bit of joy every day in knowing that I'm free of of an experience that for me was very limiting 754 01:04:58,040 --> 01:05:05,800 and very difficult because the drugs didn't really offer me any relief from voices and visions 755 01:05:05,800 --> 01:05:15,800 for me it's been entirely positive I've I felt more present I've had a lot less health problems 756 01:05:17,480 --> 01:05:25,800 there's I can I can eat without getting sick I can be awake I've I've developed a lot more confidence 757 01:05:25,800 --> 01:05:31,800 which has allowed me to stay present when I'm experiencing voices and visions I'm less confused 758 01:05:31,800 --> 01:05:37,160 which really helps with being present too that's interesting that you you you're saying that actually 759 01:05:37,160 --> 01:05:42,040 being off the meds allows you to be with your voices and visions in a better way 760 01:05:42,840 --> 01:05:51,560 absolutely for me anti-psychotics were the worst for a making voices very difficult because I just 761 01:05:51,560 --> 01:05:58,120 got very confused I couldn't think clearly and I couldn't figure out where I ended and voices 762 01:05:58,120 --> 01:06:05,640 started and and other humans started it just all became a complete hodgepodge yeah because that's 763 01:06:05,640 --> 01:06:11,320 the that's the one-size-fits-all framing that we often hear and I think it's true for a lot of people 764 01:06:11,320 --> 01:06:15,720 they take these anti-psychotics they're gonna they're gonna suppress your symptoms they're gonna make 765 01:06:15,720 --> 01:06:20,920 it easier to deal with your symptoms but you're gonna have all these trade-offs of all these negatives 766 01:06:20,920 --> 01:06:25,320 whereas for you that wasn't the case the anti-psychotics were actually making it more difficult 767 01:06:25,320 --> 01:06:31,880 to deal with your voices and and visions and you also had all these negatives and I think that's 768 01:06:31,880 --> 01:06:36,280 something that's not talked about as much because I I've definitely worked with people and 769 01:06:36,280 --> 01:06:43,720 like my experience also in anti-psychotics it made me way less capable of handling what I was going 770 01:06:43,720 --> 01:06:47,480 is going through and that's actually true of a lot of people is several people I've worked with 771 01:06:47,480 --> 01:06:52,760 where they're so-called psychotic symptoms stopped when they came off of the anti-psychotics so there's 772 01:06:52,760 --> 01:06:59,160 a lot of individuality and a lot of paradoxical and again it's each person's different and so now 773 01:06:59,160 --> 01:07:03,560 you're someone who's living with these experiences what is it like day to day just now in your life do 774 01:07:03,560 --> 01:07:09,640 still have your visions and conversations with Jesus returned do you have the sounds 775 01:07:09,640 --> 01:07:15,000 Jesus has not come back he's welcome anytime I have to say but 776 01:07:15,000 --> 01:07:20,840 because in my experience I mean he was he was really an okay kind of guy 777 01:07:20,840 --> 01:07:28,120 but but neither neither has has Beth Beth has or the kind one has not come back 778 01:07:29,160 --> 01:07:38,200 and what I still experience is a lot of the surveilling persecutory voices that I that developed after 779 01:07:38,200 --> 01:07:46,840 the hospitalization but within that I am now learning very slowly that if I can stay present 780 01:07:46,840 --> 01:07:57,240 if I if I don't lose time and place if I work on sort of the sort of steady embodiment 781 01:07:58,280 --> 01:08:05,160 that things shift that those those experiences of visions and voices which had you know just 782 01:08:05,160 --> 01:08:15,480 became all all difficult that there's a lot there there's a lot that I could stay with and let 783 01:08:15,480 --> 01:08:20,920 it unfold do the voices and visions do they help you with your writing 784 01:08:23,560 --> 01:08:31,480 they had that such a good question I have experience when I was especially writing name all the animals 785 01:08:31,480 --> 01:08:38,360 I experienced what you would fall into the category of creative voices which were just sort of 786 01:08:38,360 --> 01:08:47,800 disembodied voices or images that that helped me figure out what to do next what to what to create 787 01:08:47,800 --> 01:08:56,680 next what to write next with with this book um the voices and I are in in a little bit of a negotiation it 788 01:08:56,680 --> 01:09:06,040 feels like because I've come to understand a lot of these very difficult voices are protective voices 789 01:09:06,040 --> 01:09:11,800 and they're still on an old loop a old story of like don't talk about that don't talk and don't 790 01:09:11,800 --> 01:09:16,920 talk about that oh you really don't want to talk about that they're put us away again and 791 01:09:17,480 --> 01:09:24,440 and so it's been interesting to try to both be with them and feel this stuff coming up 792 01:09:24,440 --> 01:09:32,280 in these visions and these these sounds that are really about you know this is not what you're 793 01:09:32,280 --> 01:09:36,120 supposed to do if you want to stay out of the hospital you really shouldn't be telling everybody 794 01:09:36,120 --> 01:09:46,440 about this um and me meeting meeting them where they are kind of and sitting with that just 795 01:09:46,440 --> 01:09:52,120 sitting with that experience it's just part of my history now part of my story 796 01:09:52,120 --> 01:09:59,400 and so having having come through all this I mean the tragedy of losing your your brother and then 797 01:09:59,400 --> 01:10:05,160 Jesus disappearing and everything that you've been through where where would you say your 798 01:10:05,160 --> 01:10:12,920 at with your religious faith now in your life where is it for brought you having been through this 799 01:10:13,640 --> 01:10:19,000 whole experience I know that's a really one of my big questions these days and 800 01:10:19,000 --> 01:10:25,560 one of the ways I like to think about it is that for you know for a number of years in my life I was 801 01:10:25,560 --> 01:10:31,640 really blessed with great faith and I am now blessed I am very blessed with great doubt 802 01:10:31,640 --> 01:10:39,000 and doubt is really not that different than true faith it's it's a kind of 803 01:10:40,040 --> 01:10:50,200 searching it's a kind of feeling of of curiosity of sometimes longing of sometimes looking for 804 01:10:50,200 --> 01:10:56,840 connection and and the more I experience it the more I just think well they're really two sides of 805 01:10:56,840 --> 01:11:05,160 the same coin I'm okay with great doubt but is isn't great doubt um scary and a feeling of 806 01:11:05,160 --> 01:11:11,480 loneliness and weren't you kind of lifted up by your faith and were you kind of sure faith and 807 01:11:11,480 --> 01:11:16,920 isn't that lost now with your doubt I mean how does how do you how do you say that your great doubt 808 01:11:16,920 --> 01:11:22,760 is as for Florence useful as your as your faith was well I mean we were talking about meditation 809 01:11:22,760 --> 01:11:30,920 earlier and and one of the one of the ideas of sort of mainstream meditation these days in 810 01:11:30,920 --> 01:11:38,440 America right now is sort of experiences and feelings come and go and we cling to some of them and 811 01:11:38,440 --> 01:11:47,400 we push some of them away but they're all just experience and so I try not to cling to how 812 01:11:47,400 --> 01:11:55,720 my memories of how just lovely it was to feel this sort of expansiveness and I try not to push away 813 01:11:55,720 --> 01:12:03,800 the experience of sometimes the discomfort and the friction that comes from feeling alone or 814 01:12:03,800 --> 01:12:12,520 fear dealing with voices and visions now that are connected to to the trauma of a hospital where they're 815 01:12:12,520 --> 01:12:21,080 wanting to shut it all down and just say well it's it's it's experience and kind of what they have in 816 01:12:21,080 --> 01:12:29,240 common is is sort of looking for something beyond this sort of material surface world 817 01:12:29,240 --> 01:12:35,960 Allison remind this about you can get in touch with you we're we're about a time for the show 818 01:12:35,960 --> 01:12:43,800 so I I have a website which is name all the animals.com and I have I have one book name all the 819 01:12:43,800 --> 01:12:50,040 animals which you can buy on bookshop or you can come by Broadside Books in North Hampton I'm sure 820 01:12:50,040 --> 01:12:58,360 they got a copy and I am hard at work on a second memoir but it's not done yet so stay tuned 821 01:12:58,360 --> 01:13:03,560 maybe we'll have you back on the show when that one comes out. Oh it'd be my honor. 822 01:13:03,560 --> 01:13:09,000 Allison Smith thank you so much for joining us on Madness Radio. Thank you so much thank you both 823 01:13:09,000 --> 01:13:15,880 Will and Jacks you two are just wonderful I'm really I'm really honored. That's great time to you 824 01:13:15,880 --> 01:13:21,800 and Jacks MacMarr thank you so much for co-hosting Madness Radio. Anytime anytime I hope co-hosting 825 01:13:21,800 --> 01:13:26,680 with you will always a pleasure always a pleasure. Jacks you want to reread by Valsans when we 826 01:13:26,680 --> 01:13:32,440 people remind people who we've been talking to. Yes I can do that all right Allison Smith is a writer 827 01:13:32,440 --> 01:13:37,320 a voice-hearer and a psychiatric survivor. Her stories and essays have appeared in a number of 828 01:13:37,320 --> 01:13:43,560 outlets from Granta to Real Simple to PBS's stories from the stage. Her memoir name all the animals 829 01:13:43,560 --> 01:13:48,680 was a New York Times notable book and named one of people's 10 best books of the year. A coming 830 01:13:48,680 --> 01:13:54,200 of age story name all the animals opens on the day Allison's brother died in a car crash and covers 831 01:13:54,200 --> 01:13:58,760 the next three years of her life as she navigates her way through grief, faith and sexuality. 832 01:13:58,760 --> 01:14:04,040 Allison is at work on a sequel memoir about her experiences hearing voices. 833 01:14:04,040 --> 01:14:09,240 Allison lives in Northampton, Massachusetts and Brooklyn with her partner Cindy two dogs and six 834 01:14:09,240 --> 01:14:20,680 chickens she can be found on the web at namealltheanimals.com. 835 01:14:20,680 --> 01:14:30,040 What does it mean to be called crazy in a crazy world? Listen to Madness Radio voices and visions from 836 01:14:30,040 --> 01:14:40,600 outside mental health.