The Story Behind the Cayman Islands' First Mental Health Group Home

Jackie Neil shares her deeply personal journey as a mother, caregiver and founder of Loud Silent Voices. After her son was diagnosed with schizophrenia, her family walked through years of grief, confusion, faith and advocacy. This episode explores severe mental illness, caregiving, motherhood, grace, and the purpose that emerged from pain

Host: Leanni Tibbetts 
Produced by: Cayman Style TV
Purpose Partner: Jacques Scott (Food Division) 

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Transcript

SPEAKER_02 0:46

Well, ladies and gentlemen, today we have someone here who I affectionately call Mama Jackie. Um, and she is she has been a heart, but she's also the founder of Loud Silent Voices, which we'll hear more about today. So, Mama Jackie, welcome to the show. It's been a little while too. Yes, it's been a while getting here.

SPEAKER_01 1:10

Thank you for having me.

SPEAKER_02 1:11

I feel honored. No, it's yeah, I'm very grateful that that you were able to come and that you chose this place to, you know, share your story.

SPEAKER_01 1:21

I think I need to start my story by saying, first, I'm a child of God, I'm a daughter of the king. It took me a while to get there, but I recognize that. And secondly, I am a mother and um mother of children that God chose for me, and I wouldn't do anything any different than I did than what has played out. Loud, silent voices is my story. Um, my son, brilliant football player, six foot three, and defender, rookie of the year in 2002, defender of the year for future rookie of the year for Cayman national team, a scholarship to go away to university as a single parent. I didn't have the funds. I didn't put aside the money to send him to college, but his skill was able to get him there. And all the excitement took him up to university and dropped him off. And um, my house was full of young people when he was gone, even though he was not there. My house was still full of young people and I was still cooking. Mama Jackie. Yeah, I was still cooking, and then Hurricane Ivan happened. And um, of course, you know that well, you're maybe too young to remember remember the devastation that happened then, but I got a call out from because there were no phone lines, right? And I got a call out to the university and I spoke to his coach and I said, tell him that we're fine, no loss of life, no loss of house. His father's fine in Jamaica. And the coach said, No, Miss Neal, I need you to speak to your son because the night that CNN announced that the Cayman Islands is no more, I saw your black son turn white as a sheet, and he has not spoken a word since then. So this is Wednesday. The event happened on Saturday, Sunday. I called back and I spoke to him, and he was fine. He sounded very low is the word I'm gonna use, but I said okay, you know, he's he's was worried and he didn't hear anything, and now that he's he's so relieved that he doesn't know what to say. I didn't know that that was what they refer to as flat affect in schizophrenia. What what does that mean? It it's it's I can't describe it, it's just lack of emotions. And basically that's what it is, and um this is September. Our calls continued as normal throughout the rest of the month and into October. Um, when we spoke every weekend, and then from October the calls intensified. It was every day, every other day. And strange talk. He could hear the fans on the football field whispering about him when he was playing. I met up with him in December 20, this is 2004. He was going to Jamaica to visit his dad, and I was going to New York to pick up my daughter who had sent there after the storm. And we met up. He looked like he had come out of a GQ magazine. He I that was the best I'd ever seen him. And his some of his teammates from Future Football Club had went down, had went on the flight to Miami with me. We were meeting up in Miami. He was going to Jamaica the next day, and I was going on to New York. He, when I saw his teammates on the flight, I said, Oh, we're gonna be out of here in this airport all evening because they just can be. But when they met up, he just bounced them, and that was it. The first thing that I remembered when things started to go downhill. And he didn't want to go shopping. I thought that's strange because he was somebody that came out of a GQ magazine, was always shopping. And but he said no, he just wanted to go back to the hotel and rest. And we went back there and he woke me up about two something in the morning, and he was hungry. And I said, okay, that's not strange because he's used to living in the US now where these things are the norm, right? And we went and his friends were there in um a Denny's, and he chose to sit with me and not go where they were. And that was the second thing that I paid attention to. And the next day, there was a lot of strange talk, a lot of strange behavior, and I called his dad and I said, just keep your eye on him, you know, because he's he's under a lot of stress and he's not an A student, but you know, he's so he's trying, struggling to keep up with grades and doing what he loved, what he had eaten, breathed, slept, and woke up to, which was football. Um, his best friend met him at the best friend at the time, met him in Jamaica, and he was gonna spend a Christmas because it's December 17th, and we were gonna spend a Christmas and come back in the new year. Um that didn't happen. The young man Christmas, we have wiped that Christmas off of our calendars because it was just I wasn't there, but it was just so strange. His father experienced some things that it was strange, just there is no other word to it. And his best friend came home and he came to my door and he said, You need to do something with him because this is not him. He came home in January 2005 and he didn't go back to school. He just said, I'm not going back. And from January 2005 to May 2005, I did everything wrong. Everything. And it's painful for me to say this, but I have to say it so that when it happens to other mothers, especially, that they can know that it's okay. You can do this, these two things can coexist. You can love your child and still say these things. I said, lack of ambition, you don't want that now to life, you know. I I it it were you doing to me? Not even what was happening to yourself in your future, but what are you doing to me? Because I was embarrassed, I was ashamed, I was, you know. And in May 2005, um the song Dare Mama by Tupac, he sang that to me. And something shifted. And me, I knew that this wasn't something that he could control. Yeah, this wasn't something that he was doing to himself. Yeah, this was bigger than us, this was beyond us. And I started to research mental health, and I looked at a lot of diagnoses and the things that were happening in my household and tried to put a name to it, right? And um Christmas 2005 is another Christmas that we have just totally obliterated from our calendars. February 2006 is time. The the strange behavior is just intensifying. It his eyes are he's there, but he's not there. And smells that we can't smell, but sounds that we can't hear, things that we can't see, persons that don't exist. And at one point I thought that I was losing my mind. At one point, my best friend, who I had turned to during this time, because she was a social worker, she said to me, Something is wrong with you because your behavior is strange. I see nothing wrong with him when she came to the house or when she met up with him. And in February 2006, I came home from work and I found him on schizophrenia.com. And he turned around and he said, Jackie, this is what I have. And I said, How do you know this is what you have? And he said, Because I know what's happening in my head and I know what's happening with my body. And um I was searching for answers, knocking down every door that I could knock on, reaching out to people, anybody that I thought that could help, you know. Dr. Lockhart came into our lives in 2006, and he he said to me when I told him what my son had said, he said, you know, this is what you have to prepare for. And of course, I'm still in the stages of grief. I am in denial still for almost two years. I was in complete denial, even though we had a diagnosis then in 2007. In April 2007, we found Dr. Wendell Abel in Jamaica, and um I sent Dr. Abel a book. Everything that had happened from the day his father was born to the day that my son was born until present day. All the history of my family, my husband's, my ex-husband's family, um, my child, everything, my childhood. I just wanted Dr. Yable to have something to work with, to reverse what Dr. Lockhart had told us because and what he had said, you can't have this. And um before the week that he was to go to Jamaica, I stayed home a day from work, kept layer home from school, and um we had a good day. We watched some TV, um I caught took a nap, and when he woke up, he was ironing his clothes um about 5 30, preparing for this trip. He thought he was going to see his father and spend some time with him. And by 7 30, two ceiling fans in my house were mashed up, two windows were mashed up, and a rock had been thrown through the TV because he was listening to the news in Chicago about a rape case, and he was saying, I didn't do that. So he was thinking that they were talking about him, and he got so agitated that he had that breakdown. He got into the hospital and he spent a week and um then he went off to Jamaica and not able to formally diagnose him, and that started That started a series of ins and outs, ups and downs, hills and valleys that no human could have prep nobody could have prepared me for. Just before his diagnosis, I left him on a ward and he was having a breakdown, and I went home and I picked up my Bible and I said, God, I need to hear from you. I don't want any pastor, any church sister, anybody, no church brother to call me and say, you say, I want you to give me something from this, unless me and my two children are going to stay in this house and die. And being raised Wesley and you treat your Bible very, I always use the word tenderly. You don't, you don't, you don't turn the pages hard, you don't want them to be dog-aired, you just, you know, you you're you're so respectful of it that you probably don't even open it sometimes. But I flung it down on the ground and I was so exhausted mentally, physically, emotionally, spiritually, that I just knelt in front of my couch and I cried until I could find myself drifting off to sleep, and then I got up. And when I looked down at the book, I know it's in John, but then I couldn't tell you what book, what chapter, what verse. All I saw was this sickness is not on to death, but to God's glory. And I closed the Bible and I said, Teach me how to live while you work out your glory in our life. I didn't understand then that that was the story of Lazarus. And about two weeks, three weeks later, I was on my way to work and I got a call from a very prominent woman that worked in health services, Pauline French, and a spiritual mother. And she called me and she said, Where are you? I said, I'm on my way to work. She said, Pull over. And she said, Turn on your radio. And it was a song, Four Days Late. I I I don't even know who it's by, but it was the story of Lazarus. And Nurse French said, This is your story, your son's story. It is stink, it is dead, it is rotten. What is happening right now? But the day that Jesus says, Come forth, she said, He's going to go sleep one night with what we refer to as a madman, and the next day he's going to wake up completely healed and in his right mind. And loud, silent voices then started from that pain. And Dr. Lockhart encouraged me. The same girlfriend that told me I needed to get help um ended up having to had gone through that scenario with me so that she could identify what was happening in her own household. And together she and I started to meet informally just to support each other and share stories about you know what was happening in our individual houses. And our boys were friends and they knew each other from school and from birth. And um then Dr. Alexandra Borden um on course came on, was doing her doctorate at the time, and she would come home and do um lectures for the mental health inpatient ward. And nurse Pamela Williams was very instrumental in helping us to cement this support group. And we carried on 2007, uh 2008, 2009, and then my son came home and he got a job, and then he stopped taking his medication because he said he was healed. And in 2011, it was a morning, we were just the two of us were at home, and I was getting ready to go to work and about ready to leave out the door, and he came out of his room and he was just so distraught. And he was telling me, make them hush, make them hush. And but when I got him calmed down, he said, You see that the voices are loud to me, but silent to you. And that is how we got the name loud, silent voices, and the caregiver group continued to meet. Um, but I wanted to do something more. This burning desire to not have parents go through, especially mothers, go through the anguish that I'd gone through trying to get to this point. And in 2015, it's it's back and forth. My marriage broke up. Um, the children were back and forth. There was a lot of trauma within the family. In 2015, his grandmother in Jamaica, who he had been extremely close to, really, really close, died. He was there in the final stages of her life for the last three or four months, I think. So he saw what she went through and it really affected him. And in 2015, he had a major breakdown, and he ended up again in the hospital with Dr. Abel, and that stay kept him there until 2020. Um I was exhausted, and a lot of people, I lost a family, I lost friends, because a lot of people looked down on me for having him away from me and having him in Jamaica, and you just don't want a responsibility, you did they they didn't understand it was safer at this point. Um there was a lot of other factors that came into play. Now he had a dual diagnosis, and though it was challenging. Police and don't know where you are, and don't know what you're doing, and it was safer to keep him at Dr. Abel's place, where he was fed more than he would have gotten from me because he would they they took such good care of him and he was safe. I knew where he was. When I put my head on the pillow at night, I knew where he was. He was safe and he was loved. And I devoted my time then to building LSV. And Dr. Abel said to me, um, on one of my many trips, he said, Why don't you start a group home? And I this this is a concept that he was doing, right? To all of the Cayman's that we've had over there. And I said, I could I can't do that. And he said, Of course you can. He said, You are here, you're living it. You see what is done, you see how it's done. And I came back home, and the February, the first APF symposium. I it was at the Marriott. I can remember walking out with Dr. Lockhart and I said, Do you think I can run a group home? And he said, You absolutely can. And that is where things got off the ground. Dr. Lockhart then he found Mr. Peter Kandaya, now deceased, who wanted to do Something for mental health. And um, and in the first telephone conversation that I had with Mr. Kandi, he said, Go find the house. And I was you don't know what you're saying, you know, that's that's that's big. And he said, No, go find the house. And we he put me with a brilliant young Caymanian lady Jennifer Powell. And um me and her squirt came on looking, roamed up and down, looking for this ideal place, and it ended up being the first place that we looked at, which is just like three or four houses down from my house. It's a property with with two homes where we're able to house male and female separately, and um then the female house has a caretaker's cottage in the back, so that works out ideal that we can have the house mother there 24-7. But then COVID came. The house is there, the house is bought, and Mr. Kanbaya is getting agitated because I can't find anybody that wants to fund us because schizophrenia and bipolar is hard to deal with, it's hard to accept. It's it's it's it's not a pretty cause. Nothing to do with mental health is pretty, but that's scary. It's so I think a lot of people shied away from us because they just said it's too challenging, it's not something that can be done. And on the night before the general election, we Dr. Lockhart and I did a presentation to Rotary Central, and I can remember being there and the had this presentation all pretty up in pictures with the house and and all these things, these slideshows, and it was just neatly packaged, and it didn't work. Something happened all that the the only slide that was able to show was the picture of the house. And I panicked and I said, What am I gonna do? And Dr. Lockhart said, You're gonna do what you do best, talk your story, tell your story. And that night, Rotary Central, the first real money that LSV had ever seen, Rotary Central gave us $50,000 to open loud silent voices. And on July 10th, 2021, we opened the doors to the first mental health group home in Cayman. Wow. Um a struggle. Some people still don't believe in what we do, still don't think it can be done. But we have we have people in the shadows that that recognize, you know, that what we do is is helping other parents. And I'm proud of the work that we have done. We've helped we we've I'm gonna use the word graduated for young men out of the system um or or out of the home. We teach them simple skills cooking, cleaning, washing, taking public transport, just learning how to live independently. And think about the the benefit that this is to the family because now you're able to concentrate on taking care of you because, as a caregiver, if you don't take the time to take care of you, how you can take care of anybody else? And so we we we the client that is with us, we work especially close with that family so that that family understands that that person could come back home, yeah, and we want them to be prepared to receive their loved one or that person that is going on independently. We want to make sure that they know how to take a bus, they know how to cook a meal, they know how to turn off the stove when they finish so that they don't burn the place down. All those things are you you'd be surprised to know how many people adults, and I'm not talking about young people like you would expect that have to be taught these things. I'm talking about people in their 30s and 40s that don't know how to take public transport. And these are the things that we assist with and help them.

SPEAKER_02 26:40

Thank you for sharing that. And I didn't even realize how much you all did, no idea what it was about, didn't realize how holistic it was, you know. Um, it's not just about caregivers and it's not just about taking care of those who this this illness affects, you know, it's going a step further, teaching them skills, which is which is absolutely amazing. And it's beautiful that you're able to share your story, not just for you, but as you said, so that others can recognize the signs. Maybe a mother right now might be experiencing and she has no idea what is happening, like what are like the early signs that you think that you might have missed.

SPEAKER_01 27:23

So I think, and and it's interesting that you should say that because just as recent as I think towards the end of last year, early this year, my son said to me in in a very heated discussion, because we are by no means anywhere near perfect. We still have ups and downs at home. Um, but we were having a heated discussion about something, and he said, You missed it. I said, But you you were okay in school. He said, No, you missed it. I was not okay. So I don't know what I missed then, but I know what I saw when he came home. So I saw um just isolation. He he from a child that had been popular in school, out of school, um, had lots of friends. As I told him, my house was never empty. All of a sudden, this child is not coming out of his room. He's in there for hours. He fur when he first came home, he licensed and was on Walker's Road, and he went there. And a friend of mine told me that he stood at licensing for one day outside and staring in one direction for the entire day, from when I dropped him there at nine till about three o'clock, not moving, not talking, not saying anything, just staring in one direction. Um, his whole hygiene changed before he got ill. We would have quarrels and quarrels about Water Bill because he was very particular with his oral hygiene. And he would be in the bathroom for hours brushing his teeth, and the water's running. And I'm saying, Boy, stop it. You need to cut off the water while you're brushing your teeth. And all of a sudden, days would go by and he wouldn't brush his teeth. His shoes always looked like they came out of the factory. His white and he wore white, and they all he would clean and had a special rag for this shoe, a special rag for that shoe, and then all of a sudden, shoes were black, not clean. And then just the hearing of voices, I I think was one of the things that um at first I couldn't figure out what it was because there was just a lot of talk, and then there were references to names um of people that you wouldn't have named your child that if you'd had a child. It was pre-COVID, so you wouldn't have named your child a finding name. But um signs like that, and and then I I can remember saying to Dr. Lockhart one time, oh, he's just lazy. And he said, No, it's not laziness, his mind is trying so hard to remain in a good place that it is draining him physically, so he can't do anything. Um and I can remember him saying to the same girlfriend, he he said to me just a few, about two years ago, that that was the hardest time of his of him being ill when he was pretending to be okay. He said it was so hard to do that, and and I think the social isolation was the most, um, and the hearing of the voices, and then there was smells that we couldn't smell. Um, it was a point in time in our house that all I could do was to mop my floor with water, clean with water, because I couldn't use any products because we didn't know what it was. And all the while we thought, me and my daughter thought that something was wrong with us. Because it is if you heard him, if and it's difficult to explain, yeah. Um unless you're living it. Yeah. And he yeah, I I it it it was yeah, I don't know how to explain.

SPEAKER_02 31:44

Yeah, yeah, I could imagine because he's he is sure that this is real, yeah.

SPEAKER_01 31:51

So for reality.

SPEAKER_02 31:53

For you, it's it's like it's hard for you to comprehend what's happening.

SPEAKER_03 31:57

Yeah, yeah.

SPEAKER_02 31:58

Yeah. I know you um you did mention that you had started writing a book, and I would love if you could read a little bit from from what you had what you've started.

SPEAKER_01 32:12

Did I tell you the name of the book? I don't remember. So the name of the book is called Falling Up. Oh yes, you did. Falling Up. Yeah. Ask me how you do that. And yeah, I would love to know how you fall up.

unknown 32:29

Okay.

SPEAKER_01 32:29

So this is this is just pieces. The book is still a work in progress. So this is just pieces of that book. Yeah. The the the piece that that has not finished, and I don't think it would ever finish, is the grieving. I've always associated grief with death.

SPEAKER_02 32:52

Yes.

SPEAKER_01 32:53

I I I didn't really know until this that grief could be about loss and any loss, and and you know, uh a job, a house, a marriage. And so I was going through the stages of grief and I didn't know what it was. So some of the days when I was going through this, these are just some of the thoughts that was being jotted down. Wow. And it mightn't make sense, it mightn't sound like anything, but it meant it means something to me. Why am I grieving? And this is chapter three. This is where the falling begins. Not all at once, not dramatically, but steadily. The loss of certainty, the loss of control, the loss of the future I had quietly constructed in my mind. At first I didn't call it grief because no one had died. He was still there, but something was gone. I told myself it would pass, but the reality kept pressing in with denial. Disconnect was undeniable, and still a huge part of me resisted naming it because once you name something, it becomes real. Then I got angry at him. Why are you acting like this? Why are you doing this to me? Why are you doing this to me? I was trying to pull him back into something that he was already losing. And then I tried bargaining with God. And this is not working, so let's try that. If you give me this, I'll give you that. If I did this or said that, it would get better. Because I believe there had to be a way to fix this, because that's what mummies do. We fix things, right? What came instead was exhaustion, depression, sadness, withdrawal, social isolation, but not just for him. This was now my own social isolation. People didn't understand that I can't come to the movies with you tonight. Yeah, I can't do this event that you want me to do because I have nobody to stay with my son. And then people would say, but he's an adult, yes, but I can't. And and I can't make you understand that I can't. It's it's I was grieving a future that had not happened and might never happen. There's no clear ending to this kind of grief. It just changes, it comes in waves. Grie for who they are, grief for who they were, grief for who they might have been, grief for the version of yourself that you believed could hold everything together. So then I started to look, question myself. Am I a good mother? Is it something that I am doing that is causing all of this to happen? What didn't I do before? Was it because I beat him? Was it because I at one point because I partied? Was it because I broke up with my husband? Well, you know, was it these things that cause all this to be happening to him? I couldn't understand it. Some days it is sadness, some days it is anger, some days it is just exhaustion, and some days all of them at once. Still, I showed up because he showed up. He refused to give up, and I had to stand by him. There's no closure, no final moment, just a continuous adjustment. The grief did not move in stages like it is written. It moved in waves, and yet, still, here we were. Even when I felt like I was falling, even when I had no answers, we showed up, and slowly that became enough to take the next step. And that's how LSV then started, the diagnosis and thing. This actually started in 2000, and this started from right after the Tupac song was when this book, These Jottings, began to take place. But I want to read something from chapter one: Love That Cannot Protect. I used to believe that if you loved your child enough, you could protect them from anything. Not completely, not perfectly, but enough. Enough to keep the world from breaking them, enough to keep them from breaking themselves. I now know that this is not true. This is not a story of quick recovery or easy answers. Each situation is unique to the work you have to do as a parent, especially a mother, as an advocate. Instead, this is my story: a story of a love that refuses to let go, of faith that changes shape under pressure, of understanding and compassion, of education and boundaries, of love, sometimes tough, but always love. This is a story of grace that does not prevent the fall, but meets you inside of it and lifts you up. That's where falling up comes from. For a long time I rebelled at God. I I quarreled and I blamed him, and I just couldn't reconcile that you loved me enough to die on a cross for me, but you're causing this to happen. And then Grace made me understand that He He isn't causing it, but He's allowing it to happen because there's a purpose in it. And it took me a long time to understand that LSV was the purpose. Without this diagnosis, I would probably still be out there partying. I would probably still be out there drinking and just living life without a thought. But this diagnosis drove me to my knees that I had to depend only on God because I had nowhere else to go. This sickness is not on to death, but to God's glory, is not in my timing. I want God to allow me to see him, to see my son whole, to see him get the things that his heart desires. He wants a family, he wants a wife, he wants children, he wants a car, a house. These things are challenging because K-Man is not a very forgiving society. People on a whole, not just K-Man, is not a very forgiving society when it is something that they think you have control of, you know, like, oh, you can stop smoking, you can stop doing this, you can stop doing that. But so once you don't stop it, they're not very forgiving. So things are challenging for him in that realm. Friends, today he has my brothers, my nieces, um, my nephews, and his sister and I, and my granddog. I have I have a grand dog. I don't have any grandchildren, but I have a granddog, and his name is Zuko. And grandma loves you, Zuko. Lovely, but it it's good therapy. Zuko has been good therapy for the family, yeah. And especially for my son.

SPEAKER_02 40:51

Yeah. Well, thank you, Mama Jackie, for for being open and vulnerable with us. I mean, we I just want to thank you for your time. I want to thank you for your vulnerability. And before we wrap up, if there's anything else that is like very strongly on your heart, last remark.

SPEAKER_01 41:10

I thank you for having me. I I, as you know, I I ran from you for a while because it it is something about talking to you sitting down at Camana Bay or talking to you at church, but actually coming and and doing this where you don't know who's going to see it and you don't know the impact that it's going to have, whether good or bad. Um, I'm glad that I came. I'm glad that I got here. And I want to say something to the caregivers, if I can read something again. Um, if you're a parent or caregiver in the struggle, you're not alone. If you've asked yourself, Am I a bad parent? you're also not alone. If you're grieving a life that has not turned out quite the way you imagined it and the way you wanted it, you're not alone. And if you're loving someone through a severe mental illness, please hear this. This is not something you can fix by trying harder, but your presence matters, your consistency matters, your love, imperfect, exhausted, persistent, continuous, it matters. And even here, there's still meaning, there's still purpose, and there's still grace. Grace is the one thing that will carry you through your role as a caregiver. You can't do it without God. You you can know, you can have all the education you want to about mental illness, you can have all the education you want to about addiction, you can have the lived experiences, but if you don't have grace, and grace only comes from knowing the Father.

SPEAKER_03 42:55

Wow.

SPEAKER_01 42:56

And there is still grace, not outside the struggle, but right in the middle of it, and it lifts you up. And that's the message that I want to give. Don't give up on your children. Adult, young adult, don't care how old they are, God chose you to be that child's mother. Don't care at what stage, do not give up on your children. Love them, love them tough, love them soft, love them continually, but do not give up. And live on your knees for your children, and know that your timing is not God's timing. 20 years we've been doing this. My son is now 41. He was diagnosed when he was 21. And it is the story still unfolding. There's still a lot left that God hasn't done yet. So I know that God is still working. And He his word said this. Sickness is not on to death but to God's glory. And that's what I'm holding on to. Sometimes it's dark, sometimes it's hard, but all times it is worth it.

SPEAKER_02 44:11

And we will end on that note. We will end on that note. Thank you so much, Mama Jackie. Oh my goodness. Oh, I'm humbled right now. And if there's one thing that I'm walking away with, and it's literally even making me emotional, is the the oh my gosh, the love of a mother. Yeah. The love of yes, it's relentless.