There is much curiosity about the reality of being institutionalized. A stint in a psychiatric hospital can inspire fear or hope for the individual fighting a mental health condition. In order to tell what it’s like, Helen, Valerie and two special guests discuss hospitalization at the most personal level. All four have had multiple hospital stays and now live in recovery. Together they describe what it’s like to live in a mental hospital, and how to make the most of the place, the people and the treatment encountered there.
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Hospitalization: Conversations About the Psychiatric Hospitalization Experience
Episode 26
Helen Sneed: Welcome to Mental Health Hope and Recovery. I'm Helen Snead.
Valerie Milburn: And I'm Valerie Milburn.
Helen Sneed: We both have fought and overcome severe chronic mental illnesses. Our podcast offers a unique approach to mental health conditions. We use practical skills and inspirational true stories of recovery. Our knowledge is up close and personal.
Valerie Milburn: Helen and I are your peers. We're not doctors, therapists or social workers. We're not professionals. But we are experts. We are experts in our own lived experience with multiple mental health diagnoses and symptoms. Please join us on our journey.
Helen Sneed: We live in recovery.
Valerie Milburn: So can you this podcast does not provide medical advice. The information presented is not intended to be a substitute for or relied upon as medical advice, diagnosis or treatment. The podcast is for informational purposes only. Always seek the advice of your physician or other qualified health providers for any health related questions you may have.
Helen Sneed: Welcome to episode 26, Hospitalization Conversations about the Psychiatric Hospital Experience. Well, New Year's greetings to you all.
Valerie Milburn: Happy New Year, everybody.
Helen Sneed: All right. Happy New Year. For so many people, the beginning of a new year is a time of excitement and resolve. But in our world, the one where people are fighting for recovery from a mental health condition, the days following the holidays can be an extremely difficult time. In fact, these are the weeks when psychiatric hospitals fill up. In light of this knowledge, we decided to look at hospitalization in the most productive and intimate manner we could think of. To discuss hospitalization in depth with four individuals who are former psychiatric patients, some with multiple stints in psychiatric hospitals, we all share past hospital experiences and we all live in recovery. Today. We will provide firsthand accounts of life in a Mental hospital, what it was like, the rules and restrictions, the relationships, treatment, good or bad, what worked, what didn't, and the potent impact of such an experience. While our episode will focus on the most personal aspects of hospitalization, we want to begin with the state of psychiatric hospitals in America today. Well, this requires a look back to 1965, when the mental hospitals across this country were emptied under President John Kennedy. Now, this was done with the best of intentions. Mental hospitals were found to be cruel and inhumane. New antipsychotic drugs seemed to offer a cure. And then, of course, there was the desire for the government to save money so community health centers would treat the mentally ill and institutionalization would no longer be necessary. Flash forward to today. Well, first off, those envisioned community health centers never materialized, not nearly in the numbers they were needed. The end result of closing the mental hospitals has been a radical increase in homelessness, a staggering increase in the suicide rate, and the mentally ill are in prisons to the point where jails have become society's primary mental institutions. Fully 43% of the inmates in state prisons have been diagnosed with a mental disorder. That's right, 43%. Now, Valerie, you have looked very deeply into this and I'm hoping I know you can give us some, some figures and sort of an overall picture of what it looks like today.
Valerie Milburn: Yes, I have
Valerie Milburn: done a lot of research into these statistics and this information about the state of psychiatric hospitalization today. And to begin with, in 2020, there were 668 psychiatric hospitals in the United States. Now, half of these are private, for profit hospitals. A quarter are private nonprofit hospitals, and a quarter of the others are operated by public agencies. Here's a snapshot of how many people are currently in mental health mental health hospitals. On April 30th of 2020, 77,000 people were hospitalized in psychiatric hospitals. Of these 77,000 patients, they were divided about evenly in thirds. A third of them were in general hospitals, a third were in public psychiatric hospitals, and a third were in private psychiatric hospitals. Now, here's an interesting statistic contributing to the already long wait for a psychiatric hospital bed in Texas. NPR reported this week that 35% of all Texas psychiatric hospital beds are currently unavailable for use due to staffing shortages in all positions, everything. Nurses, laundry workers, food service employees, staffing shortages. 35% of Texas psychiatric hospital beds are currently unavailable.
Helen Sneed: Well, this is of course, the horrible thing about this is this is only one state out of 50. So think about what's going on to hinder the other 49.
Valerie Milburn: Right? It's a really staggering statistic. Now, about average length of stay. I find that really interesting that in the United States, the maximum reported average length of stay in a psychiatric hospital is 25 days. Let me address the rate of recidivism, and that means returning to the hospital after being discharged. I found two research studies that showed that approximately 40% of psychiatric hospital patients are readmitted within one year of discharge. Now here's something hopeful though. One of these studies, the one by the National Institute on Mental Health, showed that with intensive case management, this recidivism rate of 40% was reduced by half. One more thing I'd like to share, and that is information on costs of a stay in a psychiatric hospital and insurance compliance. Well, overall spending on mental health treatment and services in the United States reached 240 billion. That's billion with a B in 2020, 240 billion. That number, which is up 55% since 2009, includes spending on things like therapy and prescription medications, as well as stays in psychiatric or substance abuse rehabilitation facilities. Now, getting a handle on what portion of that 240 billion is just the cost of inpatient psychiatric hospitalizations in the US Is at least hard, if not impossible to get a handle on. The National Institute of Health kind of sums this up by saying the cost of psychiatric hospitalization in the U.S. is not, quote, not well understood. Yeah, that sums it up. But one thing we know for sure is that there is a drastic inequity in insurance coverage between mental health care coverage and all other types of health care coverage. And Medicare's 190 day limit for psychiatric hospitalization care is a glaring example of this inequity. Medicare limits people to 190 days of inpatient psychiatric hospital care over their lifetime. This is discrimination, plain and simple, because Medicare's 100 day limit does not apply to inpatient hospital care for any other health care condition. Here's a sobering statistic to wrap up with Many, many, many research studies have proven that less than half of Americans who have a mental health disorder get proper treatment. Less than half. And the medical director for behavioral health at Dallas's Baylor Scott White Health center says that only less than 10% of patients actually get effective treatment.
Helen Sneed: 10%. Well, let's hope someday it rises. You know, Valerie, what you've just described makes me feel that I can see that I was lucky to get into a hospital at
Helen Sneed: all. You know, but today we want to investigate life, treatment and outcomes of hospitalization. And for this we have two terrific guests. We're so excited and I get to introduce Ricky Allen, who's one of our guests. Ricky was born and raised out here in Texas. He's currently living in Austin, Texas and has been here for about 16 years. He enjoys writing, has an AA in Creative Writing, playing video or board games, hanging out with family and friends, football, music, and working out. And all those things have helped him in so many ways that there is no order where one is better than the other. They are all equally enjoyable. He works for a nonprofit organization that spreads awareness towards mental health, where he has the privilege to share his personal stories and keep the community informed of the resources they provide. He is currently a student at Texas State University and is working on his BA in psychology so he can use the knowledge he gains to be able to give back to the city that made him by helping the POC and LGBTQ communities. Welcome Ricky.
Valerie Milburn: Welcome Ricky.
Speaker D: Hello guys. And it's a privilege to be here.
Valerie Milburn: Well, we sure appreciate it. And our second guest today is Eileen Gray. And Eileen is back with us after a wonderful visit from her on our for our episode on Genetics. So repeat command performance.
Helen Sneed: You can run but you can't hide.
Valerie Milburn: And Eileen is originally from Chicago, but has lived in Texas for 52 years. And as Eileen says, yeah, that makes her a Texan. So we'll let her be an honorary Texan for sure. She's worked for more than 50 years to improve the lives of people with disabilities, both physical and mental disabilities. Eileen's work has included positions as a therapist, program director for a rehabilitation agency, an expert witness in federal court, and a consultant to many non profit organizations. Eileen's active in community and synagogue volunteer work and she is married to a sweet and funny singer songwriter. She loves to dance, cycle, read, swim and travel. But Eileen's favorite thing to do is anything her 10 year old grandson wants her to. So Eileen and Ricky, welcome. Thank you so much for joining us. We're so appreciative that you are here to share your experiences in psychiatric hospitals as part of this discussion because this is a discussion that will help and enlighten our listeners and us. Oh yeah, absolutely. We're going to learn from each other here as well. Let's just jump right in. We want to talk first about why we went to a psychiatric hospital the first time. And I know the first time I went, the thing I learned and thing I want to share is the importance of being honest with my psychiatrist because my psychiatrist was actually on the phone with the admissions officer at the facility. He and I had decided I would go to. And it was a substance use treatment center. And some little piece of self preservation was still alive in me at a moment when I was very, very much struggling with my mental health conditions. And I just blurted out to my psychiatrist three incidents of trauma in my life that I had yet to share with him in the 18 months I had been seeing him. And I don't even think I'd been in touch with him. But because I found that self preservation to know that I was about to squander an opportunity for treatment that my family was about to sacrifice a lot to make happen for me, I had the courage to tell him those things. And he hung up the phone and we made a new plan and I instead went to a hospital that specialized in trauma. So that's why I first went to the hospital. And Ricky, do you want to talk about your first experience, why you went.
Speaker D: Yes. So I was living on my own at the time with some roommates, and I was just getting really, really down. I got to the point where I wouldn't go to work, I couldn't even eat. Got to the point where my, my roommates at the time was monitoring and, you know, checking on me to see if everything was okay. And during those times I would, you know, lie, tell them, yeah, I'm doing fine. I'm just, you know, little sleepy, little tired. And it got to the point where it got so bad that I would be staying up three, four time, four days straight.
Speaker D: And I, like Valerie, just decided to open up and become more honest with my family because they called me. You know, my friends were worried and so my parents, they called me saying, hey, is everything okay? And I just said no. And I was on the verge of wanting to take my life. It was when I was going through my break and so I was driving too much and I was, I. I got the vision to. My mentor was telling me to go to San Angelo to visit a friend. And so I went there and the voices have audio hallucinations, you know, and I was told to go there and check on him. While I was there, I stayed in San Angelo. I was there at 3 o' clock in the morning and then I got another voice saying, go to the, Go to Dallas to visit his family. So I drove to Dallas. Do know that it's three hours to get to San Angelo and it's three hours to get to Dallas. So around 6am on the highway, I was driving to Dallas and that's when I had the voices and finally just stop. And I turned around And I remember trying to go back home. I blacked out, crashed into a car, ran right in the back of it. And then I woke up on the side, left side of the feeder road and the jeep was on the other side. And kid you, not 10 seconds later, 18 wheelers was zooming past us. And that's when I realized, yo, I, this is something that I need to do is to get to a hospital. And that's when I talked with my family and that's when I was admitted for the first time out of several others in the future that we'll discuss.
Valerie Milburn: Wow. Yeah, that's pretty scary. And we have survived some pretty dangerous moments. And it takes what it takes, right? But man, I'm glad you got the help you needed. And it's interesting that we both had a moment of honesty that brought us to the help we needed. And Eileen, what about your first trip to the hospital?
Valerie Milburn: You know, I had five or six psychiatric hospitalizations within period of a couple years. And frankly, right now it all blurs together. I was not terribly coherent at the time. I had been very ill for several years before, and a friend tells me I spent most of several years in bed just rocking and crying. And sometimes when I would get out of control, I would get up and scream and pound on walls and somehow I got to the hospital. I can't even tell you how. And I can't even discriminate between my first or second or third.
Helen Sneed: Stays.
Valerie Milburn: Yeah, I can relate to that. There are a couple of times I went in that I don't remember exactly how I got there. And I went to the hospital seven times in a period of 18 months. And Ricky, how about you? What was your. I think it's interesting for our listeners to know what our journeys were. And Eileen, thank you for explaining yours because all of ours are individual to our own paths. And Ricky, what about you?
Speaker D: So the many times that I was hospitalized and the lengths of my stay is the first time when after the accident happened and after I got things together, I was there for about a week and a half, two weeks I was in the hospitals. I was hospitalized four times. I would say in the span of the first two wasn't like between a year, year and a half. And then the seconds was three and four were in between the times of a year, actually a year. And so during the first two, I would say a year, year and a half. And then two years later, that's when I got back into a psychiatric hospital. And I was there for those times. Both times I was There. One for three months and the other for four months. And this is when I was taken to Bethesda, Maryland, so I wasn't even here. We were trying to get something, you know. And so the three and four times, I was. I was actually out in the east coast, and I was there for that many months for each three and four.
Valerie Milburn: That's amazing. Yeah, My longest day was five weeks. One was four weeks, and other ones were
Valerie Milburn: about three weeks. And, Helen, you had a long stay.
Helen Sneed: Yeah, I've been in the hospital three times. Once was for six weeks. Then there was one for a year and three months, and then the last one was for one week. So I want to go on and ask something. This gets into sort of perceptions, you know, and was hospitalization what you expected it to be, or was it something that you feared? Or what. What was it like when you first got there? I mean, I had been told I had been misinformed, that the place I was going to. This. I'm going to talk mainly about the one that I was in for 15 months, that it was like a country club, you know, and you just kind of went there and just. I don't know, just would sit down and get well. And that was. That was. That's what I thought it was going to be. Ricky, what about you?
Speaker D: Yeah, I wish I had the. The talk of, like, being in a country club, but my. My experience and my expectations, I was petrified. I was. I was legitimately, like, I had lead feet. I was dragging to get into the elevator, into the cars and everything because of what I've visioned, what I saw on, like, I read a lot of stuff. I love watching horror movies. I love playing video games that revolve around the mental and so those kind of ways where they. How they treat their patients, especially in some movies, how they, you know, beat them or drug them or, you know, you get negatively affected by them. That was my fear of going in. And so I wish I had that mindset of like, oh, it's going to be great. They're gonna give me, you know, I'm gonna be laying on a. You know, on a bed and they're gonna be feeding me grapes and all that. But I was mostly, like, hearing, like, thinking of hearing screaming and torture chambers and stuff.
Valerie Milburn: So.
Speaker D: Yeah.
Helen Sneed: Eileen, do you. Do you remember anything about your.
Valerie Milburn: Oh, yeah. Every time that I went, I was so desperate. I knew I was either going to have to get better or I was going to die, that there wasn't any in between for me. And so Every time I went, I was so happy to go because it represented hope. It represented maybe I could get better. I remember the time I was in the State Hospital, the. Actually the opposite of a country club. I. I was in Austin State Hospital for the better part of a summer. I remember lying there, and they were trying to figure out if they could admit me or not. And I was. I just. I. I have a very clear memory of this just lying there, going, please, please, please let me in. Please, please, please let me in. Because I could not cope with the obligations I felt when I wasn't in the hospital. And I knew I just needed to be taken out of the game and not have those obligations to worry about. So every time I went, it was a relief. It was a big relief.
Helen Sneed: That's very wise for someone who is as bad off as you were, I think, to look at it that way, you know, it's sort of a lifeline or something, you know. That's pretty amazing.
Valerie Milburn: Yeah, I know that. I know that feeling. But the first time I went, I was very torn between that. It was a fear of the unknown, but it was a. I need help so badly. I want to go. So I had both, and I had.
Valerie Milburn: Lost everything by that point. My husband had left me. I was all alone in the house because he took my daughter with him because clearly I could not take care of her. So I was alone in this house, and I don't have any family in Texas. Plus, I was still trying to keep it all a secret. So the worst place for me was alone in my place.
Valerie Milburn: Right.
Helen Sneed: Right.
Valerie Milburn: And I knew it.
Helen Sneed: Yeah.
Valerie Milburn: Yeah.
Helen Sneed: Well, I. This all kind of leads into. The next question is, okay, so you got there, right? What were the hospital restrictions and rules that affected your behavior and freedom of choice in movement? Now, for me, there were hundreds and hundreds of rules. They were all unwritten. And every infraction could be tiny. Was generally punished.
Helen Sneed: It was just extraordinary. We had no privacy. We were checked with a flashlight every half hour at night when we were trying to sleep. There's a speaker in the headboard and a speaker in the bathroom so that they could listen or, you know, get to you at any time and everything. I think this is pretty typical. But everything had to be that you wanted, had to be put in writing, you know, whether it was a visitor or just. Could I have my tweezers for 30 minutes? So, Eileen, what was it? What were the restrictions? Were they. Were they hard on you? Or did the rules and restrictions in some way help you? Or can you remember Yeah, I have.
Valerie Milburn: To draw a big distinction between being in the state hospital and being in private hospital. So let's say five in private hospitals. Once in the state hospital, in the private hospitals, I didn't really feel like there were a lot of restrictions, but maybe that was partly because I welcomed the restrictions. You know, no freedom of choice can be a good thing for someone who's incapable of making choices.
Helen Sneed: You're absolutely right.
Valerie Milburn: So when they told me, time for dinner, all march in together, it was like, cool, I can do that. I can't figure out how to cook my own dinner at home, but you put me in a line, and I'm happy to march. So the restrictions didn't really bother me, nor did I feel like there were very many in the private hospital. The Austin State Hospital was an entirely different thing. We were locked out of our rooms from 6am to 6pm we went to the classes we were supposed to go to. We. I mean, it was very, very regimented. But I was happy about that because I was not capable of making decisions. So having somebody tell me what to do was actually a relief for me because I didn't have to make any decisions. Did I care that I had a shower in a room with a bunch of other people and I was not allowed tweezers or any. You know. No, it didn't bother me because I had no pride left, you know, and. And someone was just telling me what to do, and it was a good thing.
Helen Sneed: What. What about you, Ricky?
Speaker D: Yeah, so I have rules and restrictions. Yeah. I had two separate experiences. One here in Texas, which was completely opposite than when I was in Bethesda, Maryland. And so the one in Texas, you know, I'm a kid at. I was a young adult in my 20s. And so I. It wasn't really negatively affected me. I mean, the rules was you couldn't have, you know, shoestrings. You couldn't have any kind of rope or kind of string around you. You're very limited on, you know, I love writing, so I couldn't have wire notebooks and stuff. But it didn't really put me in an impactful way of, like, man, I not being allowed to do anything. The only thing I didn't like was I wasn't having the availability to go outside and get some fresh air because. And I understood, you know, the reason why out of fear of somebody trying to run away or the fear of, you know, somebody doing something, you know, completely against the rules. And so here in Texas was a. Was a little bit more strict in A way of understanding, because you never know what your patients are going to do. And I want to, you know, want to respect the staff. As for outside, in those months of Maryland, it was completely opposite. We were allowed to have shoes and shoestrings and notebooks. And so when I went there for the first time, I was confused, but it wasn't like, wow, like, I'm. I'm upset kind of confused. I'm like, oh, so you guys do it a little bit differently here. And so you had your opportunities to go out, even had outings where we would go to the. The mall, the Smithsonians and everything. So it was a big difference. But I understood that the rules were very much needed for us on the path of recovery.
Valerie Milburn: Yeah, that's. The rules did help me in many ways. But we'll talk later about some of the certain types of restrictions. But right now, I want to talk about the relationships that were important to us during our times in the psychiatric hospital. And we had different types of relationships. You know, relationships with doctors, staff members,
Valerie Milburn: our fellow patients, visitors, such as family and friends. And I have a really clear memory of one of my friends coming to visit me when I didn't know she was coming. And it was a really down moment for me. I was in my bed in the hospital, facing away from the door. My back was to the door. As she walked in, I didn't hear, and suddenly she had gotten into bed and put her arms around my shoulders and said, you know, it's me. I'm here. And, you know, just melted into her. And it was. Was this amazing moment of knowing that the outside world was still there for me. My friends were still there for me. And so my visitors were very important to me when I was in the hospital. And I know everybody feels different about the people they saw and how they felt about the staff. And Eileen, what about you? What were your relationships of importance when you were in the hospital?
Valerie Milburn: You know, I don't remember relationships with doctors or staff. I preferred not to have visitors because I had been keeping on my mask when I was out in the world of professional, hard driving, competent, friendly, accessible Eileen. And I wasn't able to do that. So I didn't want to see people for whom I felt like I had to perform again because I just. I couldn't. I remember one friend coming to see me, and she said, eileen, you just don't seem like yourself. Like, duh, which self do you mean? And, you know, she kept trying to say, you're always so cheerful. You just need to act cheerful. And it just felt like pressure.
Valerie Milburn: Yeah, Put yourself up by your bootstraps, Eileen.
Helen Sneed: Yes, Please go away.
Valerie Milburn: And so after that, I asked, you know, I had a few people who I would see. One friend would come, and he and I, they. They let me. This was in one of the private hospitalizations. They would let me walk the hallways as long as I was accompanied. So we walked the bowels of St. David's and just walked in the basement. And for me, a very therapeutic thing is movement. I've got what my mother used to call, in her Yiddish way, spilkes, which is Yiddish for ants in the pants. And it really helps me to move. And so that was very therapeutic for me to have that relationship with a friend who would not make me talk, would not ask me things, would just be there so that I could walk. And then my relationship, particularly at the state hospital with the other patients, was very profound for me because, number one, most of them were homeless. And it really helped my gratitude muscles.
Valerie Milburn: Yes.
Valerie Milburn: Knowing that. Don't feel so sorry for yourself, sweetie.
Helen Sneed: You've.
Valerie Milburn: You're. You've got it pretty good. And I could also be helpful. I remember this one guy who thought he was Jesus and he wanted to read his Bible all the time, but he couldn't see. It was nothing for me to get somebody to bring me an extra pair of reading glasses, which I gave to him. Such a little thing, but it was what he needed, and I felt useful, and it was just good all around.
Valerie Milburn: Much kindness. Yes.
Helen Sneed: No.
Valerie Milburn: So.
Valerie Milburn: And, Ricky, thank you, Eileen, for sharing that. That's such a sweet story. And I know gratitude is so. It's such a grounding, healthy thing. And I know. I know the power of that. Ricky, what about you?
Speaker D: Yeah, I would say with. With my. My significant relationships, I have so many. I enjoy. Enjoy being with, you know, the staff. The staff helped me out in so many ways. They saw me. I can't remember the individual's name. I don't want to give it, even if I did. But I remember I was there, and I was. You know, I was scared for the first time. And it was this older black man, and he's like. He was just there for me. He said, whatever you need,
Speaker D: let me know. I work in the nights. And so whatever you need, I can give you. And so majority of the time, you know, I would get homesick. I would start having, you know, some of the negative side effects of the medications that I was taking. And he was on point with it, and this was in Maryland, and so he would Relay it to my parents if I wasn't feeling well, making sure that they were staying up to date with everything. And so it was. It was that great communication. There was this older lady, and she would take care of me in the afternoon. And so having those two staff that was, like, there to make sure that not only me, but the other patients were taken care of, Because I made sure, you know, are they taking care of everybody else? Because I didn't want them to pick favorites. Most of the time, I made sure as I was in the hospital, hey, did you check this person over there? And they say, no, no, no, they're good. You got to worry about yourself right now. You need water, you need something to eat. They're okay. And so making sure that, you know, I was accounted for was good. I think the most significant experience that I had from my family was my. My grandparent. I remember the first time she saw me in the hospital, she. She couldn't say anything. She was. She just had tears running down her face because she was scared of her. Her grandbaby. I was the first. First born for the grins. And later down the road, as I gotten better, she started to understand that, you know, hospitals and those visitations are sometimes what's needed. And so she, like, as I was in over to the east coast, she would start, instead of. Instead of not saying anything, she would make sure, are you taken care of? Are you learning something? You know, she became more vocal and understanding of like, oh, he's okay, and he's not being. What, Whatever fear. Because I never sat down and talked with her, whatever fear that was going in her head the first time she saw me, to the differences of where she was at. When I was getting hospitalized for the fourth time, it was a. It was like a complete 180. And then, as well as friends giving me phone calls or shooting me text messages, you know, having those kind of people in my life, you know, it let me know that I'm being looked after. I'm being. I'm being watched, you know, and they say, we're praying for you. We're sending good vibes. And it just boosted my morale because it was like, if. If they're doing this, you know, I can't let them down. I can't let myself down. And so having those opportunities to have that kind of connections with. With other individuals that are. That is, outside the walls or even inside, within the walls gave me a sense of, like, happiness. And so it was. It was great. And I still remember to this day how my Grandma. The differences of how she reacted to before and then now was just encouraging. And it's a great experience.
Valerie Milburn: Sweet grandma. And the power of friends.
Helen Sneed: Well, I am really want to look at relationships because I had so many, I guess hundreds really. I was in the hospital for so long, but as I look back, I realized that I always hated the hospitals, but I loved the people in them. And, you know, I don't know about you guys, but I was so sick and so lonely when I got there. And I found my people, there they were. They'd been, you know, people who got it, and they were my salvation. I learned everything. I had so much to learn. I came to see that every single person has a kingdom inside. But it all came down to this one person. And it was this little woman from a small town in the South. And there I was, you know, down from New York City, you know, full of myself, I'm sure. And she became my best friend and such a teacher. And she taught me about daily living, which I had really never understood, and how it's all in the little things because they're not little. And it's where life happens, is in those moments. But then she showed me something far deeper. I think through our friendship, she taught me about the healing quality of love. And I got that from her, and I was able to give it. And I will never forget that lesson. So now, returning to one of the great, great. This is more of a philosophical question for you guys. This is very, very serious. How was the food?
Helen Sneed: People always ask this now, so you've got to kind of try to give an answer. Ricky, how was it?
Speaker D: Okay, so for me, it was. It was not good for me because I had high blood pressure. And, you know, the medicine on the medical field, they want to bring that blood pressure down. And so my regimen was 2 grams of salt on all my meals on every single visit. So it was very bland for me. I would try to put, like, some substitutions, salt and all that. It never, never changed. So, yeah, I wish I had the luxury to be able to enjoy the exquisite taste of the hospital food, but fortunately, I didn't have the opportunity.
Helen Sneed: Maybe you didn't miss that.
Valerie Milburn: Yeah, you were missing.
Speaker D: Oh, I didn't miss.
Helen Sneed: Okay, is there anybody else? Because I want to say that of the three hospitals, in two of them, the food was literally inedible. Those with eating disorders, I don't know how anyone ever got out because you couldn't eat this stuff. But in the third hospital, the big hospital in the sky, it was Famous for its food, and it was all about food. And again, that didn't sit real well with me, but it sure was attractive. So now that we have sort of settled food, unless. Eileen, do you have any food comments?
Valerie Milburn: No, just that they wanted, you know, I. I couldn't eat when I was so sick. I just couldn't. I. Yeah. And so I was really skinny. So all I remember is they kept trying to get me to eat, and.
Helen Sneed: I was just like, oh, no, couldn't do it.
Valerie Milburn: Yeah.
Helen Sneed: Well, this leads to another thing sort of about, you know, life, daily life in the hospital, which is what treatment activities did you have? I mean, you know, there's like, therapy and occupational therapy and group therapy and gym and whatever. And what. What did you. What was beneficial for you of these activities?
Valerie Milburn: I don't remember even any therapies in terms of talk therapy, occupational therapy. I do remember some groups, particularly in the private hospitals, but attendance wasn't even mandatory, and so I tended not to go. What did help me were the classes that they had at the state hospital. They were didactic informational classes where we learned cbt, we read books, we practiced, and those classes helped me a whole lot. And because, you know, we were locked out of our rooms the rest of the time, I just used to practice and practice and practice. So the classes were very helpful. The other treatment I had that was very helpful for me was electroconvulsive therapy that was done during one of my private hospitalizations. I didn't realize it at the time how helpful that was, but afterwards, even though I am not, you know, I'm a few sandwiches short of a picnic now, I did have some. Some cognitive.
Helen Sneed: I agree with that, by the way.
Valerie Milburn: Well, you didn't know me before.
Helen Sneed: Okay.
Valerie Milburn: You know, I. I even had neuropsych testing done that demonstrated my deficits, so. And my memory is very poor. But it was so worth the trade off because I don't think I'd be alive if I didn't have that. Before the ect, I could not even understand what people were saying to me. I was just in a ball in the corner, rocking and moaning. And once I had that, it just. It cleared something, and I was able to understand and respond. And so that was. That was very beneficial. And then the other thing that was very beneficial is I had an EEG run electroencephalogram, and they discovered an abnormal brainwave. And I had a feeling because my. The manifestation of my symptoms was very much like my mom's and my grandma's. My grandma was dead. By then, she had had a lobotomy back in the 1940s, but my mom was still alive in an institution in Chicago. And so I called and asked
Valerie Milburn: if they would do the EEG on her as well. She has the exact head, the exact same abnormal brainwave. So they put me on a neurological medication, and that also helped. So I would say those three things, the classes at the state hospital, the ect, and the neurological medication were the three therapies that really helped me.
Helen Sneed: That's extraordinary that was discovered and how beneficial it was for you that they found it. Because for me, I'm always saying this, it was all about group therapy, because we had it endlessly and attendance was mandatory. And it turned out to be the place where I could prove my worth. Do you know what I mean? I became a very good amateur shrink because it was kind of the only. Again, the only game in town. And I threw myself into it fully. And it became such a. I don't know, it was just a real boost to my spirit because I was able to help other people. And that was second best to being helped, which I never was very good at. And my friends would. Would like, kid me. They go, helen, you have become brochure material for this hospital. So I was a good girl.
Valerie Milburn: I. Of the activities, I mean, therapy was key for me. When I was at the trauma hospital, I connected with my therapist, and we did some different types of therapy that really helped me access the memories that I needed to really address in therapy. But there was art and drama therapy, which at first I thought, what is this? I can't even draw art therapy. But it ends up being so powerful for me, a really different way to get in touch with emotions. And drama therapy was extremely cathartic. So that those are both the surprise from the activities, which sounds very light and frilly and was actually extremely powerful in trauma work. It was really. Was.
Helen Sneed: Yeah, that can. I know. Well, anyway, there's just so many now. There's so many methods of treatment. And I think that in the days when I was in the hospital, there weren't as many options, but again, there were people. Now many people in the hospital take medication, and it's kind of an important part of their regimen. And I don't know about you guys, but mine really changed radically the minute I set foot in the door. They took me off all my meds, and I went through drug withdrawals for a month. It was really, really ghastly. And they never put me back on any other medications, and I needed them. And the minute I got out of the hospital, my psychiatrist put me on medication and it was extremely helpful. So that was sort of my experience with medication.
Valerie Milburn: And I don't know if anybody else wants to address medication or not. I don't know if you did or not, Eileen. We kind of kicked this around.
Valerie Milburn: Just what I said about the, the neurological medic. Oh, I know one other thing. Excuse me. Years later, after the hospitalizations, genetic research had come a long way, baby. And it was actually my primary care physician, not my psychiatrist, who said, Ashkenazi Jewish background, early onset, very severe depression.
Valerie Milburn: There is a mutation, gene mutation that's much more common in Ashkenazi Jews than the rest of the population. And I had genetic testing done and sure enough, I have the mutation. And so probably just 15 years ago, I was put on a medical food that has also really helped me a lot. So I think that's significant. That wasn't during a hospitalization, that was later on. But I do think, you know, had that testing been available back when I was in the hospital, that would have been cool.
Valerie Milburn: Yeah. Well, I want to talk about something that we address very openly and frankly. Suicide ideation. Suicide precautions. Suicide, the subject in general is sensitive, but must be talked about. And my experience with what they call suicide precautions in
Valerie Milburn: a psychiatric hospital are still pretty hard to talk about because it was a very difficult place to be. I was on suicide precaution in two hospitals, one during a detox protocol. I was on suicide watch with somebody sitting at the end of my bed for the 72 hours of being on a detox patch. But the most difficult one was when I got to the trauma hospital. The trauma hospital had me under suicide watch for three weeks of the first three weeks of my five week stay. And being under suicide precaution meant I had to stay within 10ft of a staff member at all times, 24 hours a day for three weeks. And this was pretty darn hard. I was escorted to and from the bathroom, watched while in the bathroom, had to sleep in the day room, not my bedroom, you know, wasn't allowed a razor the whole time, couldn't shave my legs. Talk about hairy legs. I know this kept me safe, but it was extremely restrictive and in many ways humiliating. That was not the point of it at all, but that was the way it felt.
Helen Sneed: Well, for me, I came across this, this wonderful quote from Emily Andrews. She said, and she's talking to her doctor in the hospital, right? She said, if I told you what was really in my head, you'd never Let me leave this place. And I have no desire to spend time in h*** while I'm still, in theory, alive.
Valerie Milburn: That's a great quote.
Helen Sneed: Yeah, it is, because that was kind of what I did, because when I first got in the hospital, the very first day, there were all these people there, other patients, and they were in wheelchairs. And I thought, well, gosh, that makes a lot of sense. You know, if you're. If you're disabled, I'm sure it's very depressing. But as the day went by, I realized that they were strapped to their wheelchair and they were in wheelchair restraints. Well, by this time, another patient told me about full restraints, where you're in your bed and about the goon squad that came in, got people. If, you know, if you were violent, they would just, you know, five people would come and take you away to your room and strap you down. And I was not going there. And I felt the same way about suicide watch, what Valerie was describing, because I was not going to have someone stand and watch me take a shower or, you know, whatever. So it did inhibit my ability to be, I think, to show the full spectrum of my emotions and especially to talk about suicide.
Valerie Milburn: Well, talking about the safety that I felt in. The safety that being on suicide precaution provided. I want to talk about in general, the feeling of safety in a hospital. I mean, when I went into a hospital, I did feel safe. And I still. It seems like every psychiatric hospital I went into, there was chocolate pudding and there were graham crackers, and I can still, when I eat chocolate pudding or graham crackers, I feel comforted. So I obviously have a safe feeling about having been in the hospital. They. The hospitals kept me alive, and they did give me a place to heal. So what about Ricky, Eileen, was the hospital a safe place for you? Well, Eileen, you have definitely, you know, let us know that you felt very safe in the hospital for great reasons. Ricky.
Speaker D: Yeah, definitely took me a minute to realize that I am safe inside this place. And it's. I'm still sensitive on. On the topic of number of the suicide precaution, but I remember, you know, I was scared because they were going to. I was on the waiting list, and so they were going to have to put me into a general hospital and handcuff me to a bed with an officer. And my mom stood her ground saying, you know, my baby is not going to have that on him. You know, they're trying to put that on. And she says, I will stay here until it's needed.
Valerie Milburn: Yeah, I know your Mom. I can see her doing that. Yeah.
Speaker D: Mama bear was all over. So they were like, okay, you know, we're not going to do it. So I was, you know, being young and, you know, uneducated. What. It's like I was scared. But as I went inside, I did feel the sense of, like, comforted and like Valerie said about the. The chocolate pudding and stuff, I. Mine was the apple juice. Every I have, they stocked me up with apple juice. My family does, and they're like, why do you like it so much? And I'm like, it's. You'll. You won't get it. You'll never understand. But it's something that I can relate and resort to. If I'm feeling stressed, if I'm feeling anxiety or
Speaker D: any kind of emotion or mental blockage in my head, I go and get that apple juice. And I'm like, yes, I am back to normal. I feel better. So, yeah, in our refrigerator, we have two things of apple juice, and then we got three in the storage ready to go once it's drunk. So, yes, I feel safe there.
Valerie Milburn: Oh, it's wonderful. I have a new sense of. Of safety with graham crackers now because I make s' mores with my grandkids, and my granddaughter calls them snores. But so graham crackers are doubly wonderful for me now.
Valerie Milburn: I also want to. Just a quick note is I remember when I was at the state hospital asking if I could go to the chronic unit and just live there forever.
Valerie Milburn: I get it. I get it. Yeah. I remember begging to have my stay extended, and then, you know, calling the insurance company and telling them she needs to stay and begging the insurance company to let me stay longer. I know. Wanting to stay, not being ready to go. What benefited? Well, Eileen, you talked about what benefited you the most. Well, what exactly? You've talked about so many things that benefit you in the hospital. Can you pinpoint one thing that you think was the most beneficial?
Valerie Milburn: To be locked away somewhere where I had no obligations other than to get better?
Valerie Milburn: Yeah. The ability to focus on ourselves. Absolutely. Yeah.
Valerie Milburn: And time to practice what I know I needed to do and how I needed to talk to myself to stay.
Helen Sneed: Well, I think also. Eileen, did you say that you were locked out of your room all day? All day. We couldn't go to ours either. And what I needed, actually, was that forced action. Do you know what I mean? And, you know, you couldn't not go. You know, didn't matter if you were sick or whatever. You just had to go. And, you know, What? It was great for me.
Valerie Milburn: Yeah.
Helen Sneed: I mean, I didn't fight it. I really hated it. But I came to see it as a godsend, you know?
Helen Sneed: Well, for me, in terms of the, excuse me, sort of the negative components of the hospital, you know, I keep saying this again, obviously I, I can see now and I could even see then I have a real problem with power and the imbalance of power in the hospital, you know, where anyone could come at, a staff person could come at any hour of the day or night and, and, you know, accuse me of something and it'd be my word versus theirs and I didn't, wouldn't necessarily be believed. And that really bothered me a lot. And. And yet I had a full, rich life in the hospital as well. So, you know, it was safe, it was unsafe, it was all these things. But I think that one thing that I'm really curious about is when you were discharged, were you prepared for it? I mean, we all. I don't know if everyone
Helen Sneed: agrees on this, but I became extremely dependent on the hospital because, you know, when you're, when you're locked up for 15 months. Yes, you do. You know what I mean? Because all the decisions were made for me, what we've all been saying. It was such a relief, you know, all of a sudden they're back, they were Coming back on me again. And were you guys. Did you feel like you were prepared for leaving or supported by the hospital when you. When you were discharged?
Valerie Milburn: I have a quote that pretty much sums up how I felt when I was discharged. And it's a quote by Michael Thomas Ford. And he said, he said that I have to remember that even though I've changed a lot in here, I'm going back to a world that hasn't changed.
Helen Sneed: That I kind of got the same advice and boy, was that. That was wise advice for going back into the world.
Valerie Milburn: Yeah.
Helen Sneed: You know, now, Eileen, was it when you were discharged, I mean, you were. Had become, it seems like you had become really dependent on the hospital. What was it like for you?
Valerie Milburn: Did they help you the first five admissions? When I went back into the world, that hadn't changed. I just got really sick again. So I guess I wasn't prepared the last time. My last hospitalization was the state hospital. And when I came out of there, I knew, I knew for weeks when I was, you know, when my discharge date was going to be. And I really started to line things up so that I could survive. And I had friends who were angels. I mentioned I didn't have any family in Texas other than my former husband and my daughter, and she was still a teenager.
Valerie Milburn: But.
Valerie Milburn: When I got out the last time and I had to change my life completely, a friend of mine sold my house and took a dollar commission. Other friends screened apartments for me because I had to move from my 2,700 square foot house into an 800 square foot apartment. Sold my stuff, got rid of my stuff. Friends just stepped in and in some ways I didn't even know. Valerie told the story about her friend coming in when she was in the. I just recently was meeting with a friend of mine with some other people, and she mentioned that I would call her and she would come over in the middle of the night and get in bed with me and just hold me till morning because I was just shaking. So did the hospital prepare me? No, but my friends prepared me and were there for me as I. As I slowly got better and better.
Valerie Milburn: My friends just really came through for us, didn't they?
Valerie Milburn: Yeah.
Valerie Milburn: I wanted to ask you, Ricky, when you went back to the same hospital, what was it like going back?
Speaker D: Ding, ding. Round two. I'm just kidding. No, but when I was in there another time, I had a little bit more on my agenda of what I wanted out of it. The experience. When it was going back, I was like, I have a better mindset I have a better agenda, I have a better expectations of what I want to get educated on myself even further and talk about medications and talk about new kind of coping strategies, new mechanisms that I can gain while I'm here. So it's round two is a jokingly manner. But I was like, let's, let's get to work. Let's get to work.
Valerie Milburn: That's how I felt. Let's get to work. Because going back to the trauma hospital was the best thing for me because I had more work to do with the team I had built there. My previous visit. And I know Helen has something really interesting I want to hear that our listeners are going to want to hear.
Helen Sneed: And all right, this is really our last question, but Valerie has just unashamedly dumped it on me. Is this what you're talking about?
Valerie Milburn: Yes.
Helen Sneed: Okay. All right, so these are just three quickies. First of all is what is the thing I wish I had known before I was hospitalized
Helen Sneed: and before going in? And so that's very easy. It's that this is not going to be easy. And don't test the system too much at first. I would give that I would.
Valerie Milburn: That's what you wish somebody had told you not to test the system and it's not going to be easy.
Helen Sneed: Yes.
Valerie Milburn: Okay.
Helen Sneed: And then the second one is what would I wish that I had been told before I was discharged? And this one I can be really, really firm about. Leave nothing to chance, have structure and support in place all the time. Eileen shaking her head yes, it's all about relationships and structure. That's what I wish I had been told because I had too many free hours and they were hellish. They were just hellish. And then here's this one. This is a short one. This is the final one. What do I wish I could have said to the doctor in charge of the hospital? Well, this is very brief. If you're going to play God, you should do a better job.
Valerie Milburn: Oh, Helen.
Helen Sneed: So, okay, I freely admit that I could continue this discussion for the rest of the day with all of you guys. But due to time, we must bring this part of the episode to a close. And Ricky and Eileen, your stories and you are amazing. Thank you for being so open with these private facts. And I, I know that you will help many listeners with your candor and your hard won wisdom. These are not easy memories to revisit for any of us. And Valerie and I want you to know how grateful we are for your generosity and courage. So thank you very much.
Valerie Milburn: Thank you both so Much. This has been just wonderful, wonderful.
Valerie Milburn: Thank you for having us.
Helen Sneed: Okay, well, you know what? We'll probably have you back for something else, so be prepared.
Valerie Milburn: Yeah.
Helen Sneed: Anyway, before our traditional mindfulness exercise, Valerie will give a quick explanation of what may be the best kept secret in the psychiatric universe. Valerie?
Valerie Milburn: Yes. That secret is called patience. It's called Psychiatric Advance Directives and a pad. A Psychiatric Advanced Directive is a legal document that details a person's preferences for future mental health treatment and. Or you can leave it out or put it in. Names an individual to make treatment decisions if the person is in a crisis and unable to make decisions for him or herself. Nawala pad, a Psychiatric Advanced directive has been around for years. They aren't often used in clinical settings. Many people with mental illnesses and their families and health professionals are not familiar with pads. Currently, only 25 states have laws that allow them. Now, for states that do not have laws that allow a pad, an individual can still direct, still draft a pad under the more general statutes connected to health care directives or living wills. However, a pad is more beneficial than a healthcare directive or a living will because a PADD addresses the unique issues of mental health care and treatment. And these issues include things like medication preferences, inpatient treatment considerations, and the reality that a person can experience changes in their wellness over time. To find information about a padd, you can go to the National Resource center on Psychiatric Advanced Direct directives, which is nrc-pad.org or just type Psychiatric Advanced Directives into your search engine and you will find all the information you need.
Helen Sneed: Oh, Valerie, thank you so much. And I, you know, again, I want. I'm always encouraging people to do something I haven't done yet, but I really mean to do this because it can make a huge difference in the quality of your treatment and of your life, really. And now, Valerie will lead us in a mindfulness exercise.
Valerie Milburn: Yes, we will close today's episode in our traditional way with a mindfulness exercise. What is mindfulness? I always give a definition. Mindfulness is a mental state achieved by focusing one's awareness on the present moment while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations without judgment. Today's mindfulness practice is called Cultivating a sense of Agency. Agency is a term for a feeling of being able to
Valerie Milburn: make things happen. With our own free will and sense of empowerment, we can build upon our agency until there's nothing we feel we can't take on. This embodied strength and kindness is always inside us. Let's get mindful. Close your eyes. If you can settle in and breathe as always. Let's begin with a few diaphragmatic breaths. Whether your eyes are open or closed, let's steady our breathing with two diaphragmatic breaths. When you do this on your own, take as many breaths as you need to become calm and centered. I usually take about 10 diaphragmatic breaths as I start my meditation and mindfulness practice. Let's breathe. Inhale through your nose, expanding that balloon in your stomach as you inhale. Exhale through your mouth, pulling in your stomach as you do. Forcefully exhaling again. Inhale through your nose. Expand that imaginary balloon in your stomach as you inhale. Exhale through your mouth. Pull your stomach all the way in. Now keep this slow, steady breath going. Reflect on a time in your life when you felt really good about having attained a goal. What goal do you feel really proud of? What choices and actions did you make toward achieving that goal? What were some of the little things that led up to achieving that goal? Now reflect on some things that you get done over the course of a day. Bring mindfulness to some of the positive choices you've made, to the empowering experiences that lead to a greater feeling of accomplishment, that lead to agency. See if you can open to this feeling of accomplishment, this feeling of agency, and let it fill you, Help it last and allow it to become more intense in your mind, your heart, your body. Bring mindfulness to a sense of possibility. Thank you for doing this mindfulness exercise with me.
Helen Sneed: Thank you, Valerie. As always, that was much needed. And our thanks again to Eileen and Ricky and to you, our listeners, for your time in attendance, which means so much to us. In the next episode, we're going to delve more deeply into the vast subject of bipolar disorder and the topics addressed in our incredible conversation with national bipolar expert, Dr. Stephen Strakowski.
Valerie Milburn: Yes, Dr. Strakowski was so good, we have to go back and talk to him about what he talked about again.
Helen Sneed: It was an embarrassment of riches. We really can't have to go back and do even more work on it because it was so great. So if you're interested at all in bipolar disorder, please first listen to episode 24 and then join us for additional up to date findings about bipolar symptoms, treatment, research and recovery. And that will be in our next episode. So until then, I leave you with our favorite word. Onward.
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