NEABPD - Yale Conference 2019 - Part 4

first to join me in welcoming Emma Eden Ramos the author of two novels and one poetry chat book she is a teacher she is an incredibly effective and articulate speaker and she's here to talk with us about her journey please join me in welcoming Ms Ramos [Applause] [Music] um first I would like to thank Dr Axelrod and the other directors of today's conference Dr Perry Hoffman and the amazing leaders at Nea BPD for inviting me to share my story this afternoon I am I'm great I am deeply grateful for this opportunity there is as I'm sure you now know a strong connection between trauma and the development of borderline personality disorder in one study 52 of the participants diagnosed with BPD met full criteria for post-traumatic stress disorder while another study revealed that up to 75 percent of people with BPD had a history of trauma I am here today because unfortunately these numbers apply to me as a child I experienced multiple forms of abuse from multiple abusers for a long time I believed that it was my fault that I elicited abusive behaviors from the adults in my life and that that was evidence of a personal defect I carried that belief with me into early adulthood I have since learned that that is a common false narrative among survivors every child deserves physical and emotional safety that is a human right when I was five years old I was molested by a family friend he wasn't someone I knew well or saw often but the incident left a permanent scar on my psyche like many children who are violated at an age when they cannot fully articulate the experience of sexual assault I didn't tell anyone not the doctors I saw when I became incontinent after the event they assumed I was regressing because I was jealous of my new sibling and wanted attention or the psychologist I saw when the problem persisted this was my first experience with abuse and I believe it shaped the way I responded to trauma the trauma I experienced shortly after but I remember most vividly is the feeling of having been invaded the need to purge myself of that feeling and the inch and internalizing the message that other people had the right to violate me not long after when I was six my family hired a caretaker who I now recognized was severely mentally ill I'll call her Cindy she could be warm loving and fun she taught me about Indian culture lent me old Bollywood tapes and encouraged me to pursue my childhood dream of becoming a dancer when I was sick and home from school she let me watch all my children with her and we talk about the characters as though they were real people looking back I can see how Cindy's struggled with the difference between reality and fantasy she was exceedingly superstitious had a particular fear of demonic possession and believed that children were susceptible to it when you're a child it's unnerving to hear that the devil is everywhere you turn it is terrifying to be told that you yourself are possessed and wicked and the person who is supposed to care for you be to you until her hands are bloodied and she hurts too much to continue these episodes were always followed by effusive apologies then the excuse if you weren't so bad I wouldn't have to and then the final warning if anyone finds out they will send me to India and I will die we would enter into a period could be weeks could be months where she would act once again like a loving surrogate mother like many who abuse children Cindy stopped when I grew old enough to fight back when I was 14 she died suddenly of liver cancer my mother sister and I went to the morgue to identify her body I know this sounds irrational but I wondered thought maybe it was possible that I had somehow contributed to her death if only I'd been an easier child I thought perhaps she wouldn't have gotten sick less than a year later I tried to kill myself for the first time when you're a kid living with the fear that abuse is imminent you become hypersensitive to social cues as a way to protect yourself a swift gesture or an expression of irritation can be enough to send you into panic mode I learned to be on high alert to carefully study adults expressions and movements to try and figure out what preceded an attack but social signals are easy to misinterpret when you're a kid and I found that as I got older and physical abuse was no longer a threat I still carried the expectation that the people in my life would hurt me if I ever let down my guard to this day I sometimes Flinch when someone steps in to hug me my heart often races when someone puts their hand on my shoulder Studies have shown that people with borderline personality disorder function in a state of heightened emotional arousal when shown pictures during brain scans our amygdalas respond to benign images and disturbing images with equal to near equal intensity it's as though we lack emotional shock absorbers but if you consider that around 75 percent of BPD suffers have experienced trauma of some sort and understand how trauma affects our sense of personal safety you can come to understand why we see danger even where danger may not exist while I struggled with PTSD symptoms throughout my childhood borderline personality disorder didn't come into my life until I turned 15. my first year of high school marked what would become a 12-year fight from my life [Music] to my doctors therapists and teachers I was a scary adolescent who simply wanted to die and as one therapist told me likely wouldn't make it to 21. I cut myself on a daily basis overdosed on pills and alcohol and talked about suicide the way one might talk about going off to college or exploring a new career but the truth is that I didn't want to die I just didn't want to live the way I was living and death seemed like the only way to stop the feelings of emptiness rage and profound disconnection for me out of all the symptoms of borderline personality disorder the worst was The Chronic feeling of empty The Chronic feeling of emptiness it's a bit like looking into a mirror and not seeing your own reflection unlike other people who can describe themselves as say fun or clever or any other characteristic I couldn't and many others with BPD can't either without another person's personality to adopt as my own I felt virtually non-existent I would drift unanchored to any grounding sense of identity until I'd meet someone who made me feel connected that person would become my one lifeline and I would rely solely on them for emotional sustenance these relationships were always short-lived and their endings oftentimes proceeded an overdose or a hospitalization Looking Back Now I struggle with feelings of guilt and shame over how these relationships ended and the hurt I caused I want people who have had a negative experience with someone with BPD to know that when they lash out when they lose control and behave in ways that are terrifying it's not because they are malicious people they are just doing what they think they need to do to survive I saw a handful of mental health professionals in my teens I'd read Girl Interrupted looked up borderline personality disorder and knew immediately that that was what I suffered from each time I would meet a new therapist I would tell them my self-diagnosis and they with few exceptions would tell me that BPD was not a label I wanted attached to my name and that in my adolescent search for an identity I should pick something else kind of you know the way you would talk about a piercing or a hair new hair color this one this one won't suit you try another so while I felt confident that I knew what was wrong with me the professionals used names like bipolar one two Rapid Cycling schizoaffective disorder and even mild schizophrenia instead of dialectical behavioral therapy or any treatment that is proven effective for people like me I was treated with psychodynamic talk talk therapy and medication a lot of medication by my 17th birthday I was on a cocktail of Ritalin a mood stabilizer an antipsychotic a long-acting benzodiazepine because the Ritalin made me anxious and antidepressant and a nightly sleeping pill a few months after I turned 17 I was sent to a residential treatment center where I was once again misdiagnosed this time with Oppositional Defiant Disorder there some forms of physical punishment were considered acceptable and I was pinned down and put in physical holds often until I signed myself out at 18. the nine months I spent in an RTC Residential Treatment Center is a crucial part of my story because it was there that the memories of my early trauma began to resurface I hadn't forgotten them I hadn't repressed them they just did not affect me until I was once again no longer in control of my own body I began having chronic nightmares then flashbacks the flashbacks grew more Vivid and frightening physical restraint in my opinion should only be used to subdue someone who is trying to harm themselves or others centers that practice any form of corporal punishment run the risk of re-traumatizing the people in their care my post-rtc therapist diagnosed me with borderline personality disorder finally somebody got it but she believed that for me trauma work was more pressing than dialectical behavioral therapy I know this therapist had the best of intentions she just didn't understand that for someone who suffers from profound emotional liability treatment that relies primarily on digging into the past is worse than ineffective it's detrimental [Music] I began seeing a psychoanalyst three times a week and my mental health deteriorated the flashbacks grew more intense and I began abusing alcohol to make them stop the worst my PTSD got the harder my analysts pushed she believed in strict Freudian fashion that if I discussed my trauma history enough I would finally free myself from the whole it holds it had over my life I was in analysis talking about trauma during sessions self-medicating with alcohol and pills and cutting myself for almost five years when I was 23 I went out drinking with a friend we were drugged robbed and to this day neither of us knows what happened during the time we were unconscious this experience led me to Alcoholics Anonymous unlike analysis AA has a structure a strict set of guidelines and emphasizes the importance of taking personal responsibility while AAA was not the most effective treatment for me the more cognitive behavioral approach to treatment helped and I felt more in control after meetings than I did after sessions of analysis finally in my mid-20s I became involved with dialectical behavioral therapy I spent a month at a day Treatment Center where I had the opportunity to connect with other women and one man who also suffered from BPD for me being able to meet others who had a shared experience was eye-opening and changed the way I viewed my diagnosis and myself here I was surrounded by people who like me had arguably the most stigmatized mental health disorder and none of them represented or resembled rather the sociopathic villains the media portrays us as the Fatal Attraction stereotype you know the homicidal bunny bug boiler may make good I may make for good entertainment but is actually quite harmful to people who suffer from BPD and when I consider the mental health professionals who are ready to diagnose me with anything and everything I wonder how much of that fear of the term borderline personality disorder came from those media portrayals the patients I met at the day Treatment Center were vibrant smart and deeply engaging they all spent the majority of their mental energy trying to maintain emotional homeostasis which when you have BPD feels like a full-time job they also all had histories of childhood trauma as I began to empathize with them I slowly began to empathize with myself when you have been abused by the people in your life who were supposed to look after and protect you finding the right therapist can be a challenge when you have trauma and BPD it's even more challenging because the therapist needs to be someone who can gain your trust but also someone who is experienced in working with patients who are so highly emotionally sensitive and reactive I owe a great deal of my recovery to the fact that I kind of won the therapist jackpot figuratively speaking um when I was 26 I began working with a DBT therapist who is actually here today in the audience hey um because I was used to analysis my instinct was to begin treatment by delving into my trauma history every time I would begin to talk about the abuse my therapist would redirect me explaining that while she acknowledged the topic needed exploring it was important that we wait until I was more able to regulate my emotions and tolerate the pain the memories brought up learning skills to self-soothe and self-regulate for me has been a critical part of my recovery I wouldn't be able to speak here today without them living with both BPD and PTSD is a moment-to-moment struggle when you're not navigating your everyday life and the intense emotions merely existing brings up you're living with a constant rewind or Loop of painful memories I think that trauma work is important because PTSD can make it difficult to form relationships and trust people enough to maintain those relationships but in my experience that work is impossible without First Learning the skills needed to tolerate the pain trauma brings up I am currently at a place in my life where I can speak about my childhood without becoming unhinged when I am triggered I have the tools to ground myself and regroup remission and recovery from BPD and PTSD is not easy but it is possible and it is absolutely worth fighting for thank you [Applause] [Music] [Applause] thank you so much our next lived experience speaker is Dr Linda cossens who identifies herself as a parent a pediatrician and a wife she's here to speak with us about her lived experiences with her family about trauma and borderline personality disorder we are getting our slides up and running here you're almost got it there yep what's going on all right Todd's doing it Todd's doing it right there this is technology magic thank you Todd so you can advance it like this there we go all right thank you so much thank you for inviting me to speak today it's really a privilege to be here my goal is to share my family's experience with borderline personality disorder to talk about the impact of trauma in our family and for our family that would be the non-criterion a trauma that Dr Harnett and Dr Williams talked about um and to explain how family connections altered our experience for the better my plan is to explain what life was like before and during the struggles we've had to talk about how and why family connections helped us and to share our story since that time in 2014 I attended this conference by myself I didn't know anyone here my middle child Noah was in a residential treatment center in Utah I was relieved so relieved that she was safe and that I could wake up every day knowing that she was safe and I was also relieved that there was peace in our house for the first time in a long time however Noah hadn't started to do the work of recovery yet and she wasn't attempting to use the DBT principles and I didn't know if she ever would I was desperate for help I wanted to learn something anything about how to help her so I signed up for the conference while I was at the conference I was astounded to see health professionals who were interested in treating people with borderline personality disorder and not only that they wanted to learn to do it better there were speeches by very accomplished people who were at the Forefront of their field they were passionate about teaching and about researching and I'm sure their teaching was excellent that day but the only people that I remember speaking were in Anne and Matt Costello who are parents of two adult children with borderline personality disorder and teachers of many family connections classes by that time my husband and I had been on the waiting list for family connections for more than a year [Music] um and um Ann and Matt Costello were talking about and had lived through experiences that I was experiencing they were survivors and they were not just survivors but they were people who had turned back to help the people that were still drowning behind them they were my heroes my own family had been dealing with borderline personality disorder for quite a while since well before we knew that there was a name for it Andrew who's Now 23 Noah on the left is 21. and Rachel is 18. Andrew was Placid and content from day one when he was a baby we actually thought he'd never learned to walk because he would reach for a toy and if he couldn't reach the toy he would kind of turn and go ah and just play with what he could reach my husband used to say this baby has no ambition um Noah was different Noah was different in utero she even moved differently when I was about seven months pregnant I said to my husband this baby is not like the other baby and I was right once she was born she was just the smileiest baby and she was tons of fun she was really feisty she would change in an instant and be crying really hard and she was intense we used to say she is a round Peg and a family of square holes we were all like watercolors all kind of muted in Shades of Gray and Noah was like a Technicolor rainbow so I had four copies of this and one copy of this as she grew Noah stayed intense she was tremendously creative she was extremely bright she was highly social she was also tremendously temperamental extremely passionate and highly reactive this sometimes caused problems with other children I could see Noah's emotions were getting her in trouble so I was constantly saying calm down take it easy you don't have to get so upset and Noah herself was aware that she had big emotions when she was in second grade for health class she had to make a folder and um she had to identify something she was good at and something she needed to work on this is the folder she made it says good at Art improve feelings through the years we asked for help many times and in many different ways um much like Emma said there were numerous diagnoses some were accurate some were inaccurate anxiety depression add I kept asking could she have borderline personality disorder and they would say no we don't diagnose that until people are 18 years old she may have some traits but we don't diagnose that until people are 18 years old and I now know that that's outdated information that if you can you should because there's help there's there are treatments that are very effective as we've been talking about all day and so much can be done to help in Middle School Noah began to experience some trauma in the form of bullying we had actually no idea until we witnessed it one night at a school function her classmates weren't aware we were watching and it was really sickening to see these were classmates who had been her friends these were kids that I had had sleep over my house we had been to sporting events together gone to plays and I watched as they alternately froze her out and then turned on her with their words I've learned through my work as a pediatrician that oftentimes kids won't tell adults about the bullying they're experiencing sometimes because they think that the adults would side with the bullies and sometimes because they think the adults are already aware and in our case that's exactly what happened we asked Noah later why didn't you tell us you were being bullied and she said I thought you knew sometimes trauma impacts behavior and we don't have eyes to see it because we're not aware of the trauma that's happened suddenly it made sense why every Sunday night she had a headache or a stomach ache or both why she was having outbursts after school for a variety of reasons we felt like her school wouldn't be able to Ally with us in dealing with this bullying situation so we pulled her out of the school the next week in her new school the public school in our town she initially did well she joined the drama club and she made some friends but soon her relationships became intense and chaotic and the wheels started falling off in all areas by the middle of her freshman year she was skipping classes failing classes ditching School altogether there was emotional dysregulation at home there was lying there was a lot of self-injury we were bringing her to therapy once a week twice a week there was a written plan for school individual therapy family therapy meetings with teachers meetings with guidance counselors those people were like my pen pals four different therapists a psychiatrist medicine more medicine different medicine we were desperately trying to connect with Noah and reel her back in but nothing that we were doing was working meanwhile our other children were suffering too watching their sibling implode participating in bruising interactions with Noah and trying hard to live their life with parents who were distracted and heart sick and stretched beyond belief there was trauma all around one of the features of trauma is that it doesn't just affect the traumatized person but there's collateral damage there's a ripple effect and for Noah at that time and I imagine many others they don't just absorb their distress they pass it on so I think of it as being more like a mirror than a cushion some people because of how they were wired or the skills they've learned or the life experiences they've had when trauma comes their way or when stress comes their way they're like a cushion they can absorb it a little bit without passing it on to other people other people are like a mirror or even like a magnifying glass when they experience trauma or stress they discharge it by passing it on to other people and so the stress and distress circled around and around and around in our family one day I caught Noah and a minor lie it was really actually nothing compared to some of the lies and I just had this Epiphany and I looked at her and I thought to myself we cannot give you the help you need here at our home and I took my laptop right then and I sat down on the couch I didn't even know what to look for I just started Googling like help for teen and trouble eventually my search led us to people who could help us an educational consultant who knew of some programs all right this picture was taken at my son's graduation on June 13 2013. I don't know if you can see in it how we're all keeping our distance from from Noah no one really knew quite what to do with her by that point um the following day she and I got on a plane to Durango Colorado for Wilderness therapy just prior to her departure she came out to us as transgender and this was New Territory for us we struggled to integrate our new understanding of Noah into our interactions we thought about how it must be for Noah to move through the world in a body that made others misperceive her the invalidation that must invite every day from peers from family members from all the people around her ultimately the bottom line for us was that we wanted to be in relationship with Noah so we resolved to learn what we needed to know about gender identity issues and do our own work and not visit our fears and weaknesses on Noah I got Clarity and realized that it's not my job to understand every decision that Noah makes it's my job to love her and that really became my true north that was something that when things looked hard I could fall back on that I could fall back on how can I love her best and that simplified things and made things doable and gave me courage and resilience when Noah arrived in Durango Colorado for Wilderness therapy we were a little bit worried we were actually worried that she'd be able to just kind of hold it together while she was there and that people would be like why'd you bring her here what's there's nothing wrong with her we need not have worried in the third week the Wilderness staff called us and said no one needs the highest level of care you need to find her a residential treatment center for after she graduates here was actually strangely validating um so we did and two days after she graduated from Wilderness we brought her to a residential treatment center in Utah while Noah was in residential in her second summer away from us we got the call we had been accepted into a family connections program after a year and a half we were in the class and what a class it was family connections as Marie Paul was saying is a free 12-week long group program it's run by family members and it provides education and skills training and support for people who are in relationship with people who are living with borderline personality disorder our class was taught by Marie Paul D Valdivia and Beth mccrave both mothers of young adults with borderline personality disorder they were able to understand what we were going through and to speak words of encouragement and teach us the skills that they too were using on a daily basis you see while Noah was in treatment she was being exposed to DBT skills for self-regulating and for communicating and we were not family connections was our chance to learn those skills and to practice them Marie Paul now remembers me as shell-shocked and that would be accurate I was definitely quiet in the group I was taking it all in but I was not confident enough to participate in the role plays or the conversations most for the most part however on my own time I was participating almost non-stop I was using my skills on grocery store clerks on my patients on their parents on my other family members and I was finding out that wow these skills really work family connections was also our chance to be supported in our grief and our confusion and in our efforts at resilience we had thought that we were alone we didn't know anyone in our lives or in our community that was going through something like this our friends kids were going to prom getting their driver's licenses applying to college graduating they didn't know how to talk to us about what we were going through and we didn't know how to talk with them family connections was a place that we could be with people who got it it was so life-giving that I started to talk about it to our therapist at the Residential Treatment Center and the school ultimately sent three of their therapists to be trained in family connections and they now do teleconnections and they also um teach family connections principles to people who are on the to the parents of their students who are on the waiting list for family connections so fast forward to today as I mentioned in December of 2014 Noah graduated from the residential treatment program in Utah and came home from uh to us and we were ready because we had completed family Connections in September of 2014. by the time Noah came home we all had some skills some DBT principles and that was really helpful because we had three teenagers at home we spent the next months and years healing together rebuilding trust and creating positive memories to build on Noah is amazing and today she's very very healthy she's healed her relationships with us she has a number of close friends she was married in July and she has a strong relationship with her husband she's just finishing her junior year in college and she's a supervisor at her job I live in Upton Massachusetts it's about two miles from the starting line of the Boston Marathon and Marathon Monday also known as Patriots Day in Massachusetts is a very big deal and I um a lot it's not an uncommon thing for people from our area to run in the marathon and I have a actually surprising number of friends who have one of them was telling me about her experiencing her experience running the Boston Marathon and she said when you're in the Boston Marathon the Kenyans the elite Runners at the front of the pack they're amazing but they're not the people that keep you going the people that keep you going are the people that are a few steps ahead of you for us the people a few steps ahead of us were our leaders and family connections I'll always be grateful that they took time out during their own challenging and stressful parenting experiences to turn back and give us skills and give us hope so having walked this path and still being on the journey I have a few things to say to each of you who are here today for professionals working with families I would like to say this is life-changing work you're doing I know this because my life and my daughter's life and my family's life were changed by people just like you the family is your patient too point the family toward help for parents and for family members who are attending this conference today listening through a haze of grief and Trauma I would like to say there is hope there is so much hope there's a huge amount of Hope you could do anything you need to do for your family member you already have you found your way here and there's hope in these principles and in these people this is a hard path we're on but you can do it for people who live with borderline personality disorder I would like to say borderline personality disorder is a living Agony I know because I saw it with my daughter but so much is now known and DBT is such an effective treatment and by the way can help you like as if it's a superpower can help you deal with people do the work stick with the work find a therapist and stick with him or her as a physician I can tell you that there's a remission rate that's so high that I wish that there was a remission rate like that for diabetes or for most kinds of cancer in closing I would like to say thank you to all of you for being here for doing this work and for listening to my story [Applause] [Music] [Applause] [Music]

Channel: NEA BPD

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Id: dMrJ02_Gr0Y

Length: 39min 16sec (2356 seconds)

Published: Tue Jan 31 2023