amanda@rethinkbpd.com

Amanda Speaks at NIMH: BPD & The New Reality

*Editor’s note: video contains references to self-injury and suicide.

I’d like to share with you a speech I gave at the National Institute of Mental Health in Bethesda, Maryland back in October, 2010. I was surprised and flattered to learn this talk had made it on the homepage of NIMH, and doubly surprised of the subsequent outpouring in positive feedback. Thank you so much!

This has been the most difficult talk I had to prepare. As much as I am an advocate, I am for the most part a private person, wanting to protect those I love from the public light. At the same time, however, I know that the vulnerabilities I talk about in my own life often echo in the lives of many others. The story of borderline personality disorder isn’t easy, rarely simple and often not talked about. If we are able to give voice to this conversation and the new reality of borderline personality disorder in our own unique way, maybe it allows others the opportunity to take that first step in acceptance, change and healing.

Special thanks to the NIMH, the NEABPD family, and my speaking coach Marianne Gobeil.

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Transcript:
I know I am here to share with you my story living with borderline personality disorder, but first I want you to tell you about a woman named Heather, and how someone I’ve never met – and never will meet – has changed the trajectory of my own story.

Something moves me to listen closer — deeper — to her story, her voice; these are her words: Teach me how to live…

After all the drugs, alcohol, abusive relationships, after sobering up and going back to school, after all the meds and misdiagnoses, and still not getting better, after all her efforts Heather made one final attempt.

She asked of her counselor, “Can you teach me how to live?”

Four months later, in the winter of 2009 Heather became another statistic. Like me, she is one of the 75% living with BPD who attempt suicide. Tragically, she is also one of the 10% who die by their own hands.

It is staggering: BPD has a suicide rate that is 400 times the national average.

Her life is a tragedy, not only because she has left behind her two young children, not only because her diagnosis was with-held, but also because she tried so hard to get people to listen — her whole life restless to find something, someone, that will teach her how to live.

I cannot help but wonder how I am able to survive this debilitating disorder while others have not. I have been there too, wondering what happens when you don’t know how to love yourself… What happens when ordinary objects become weapons and subway tracks lure you into salvation? What happens when four glasses of whiskey are the only way you know how to sleep and your waking days are spent hiding in bathroom stalls, creating nooses out of belts?

To my family, to my friends, to you — to those I cherish, those who were there when I couldn’t love myself, I thank you for loving me anyway. Your love kept me alive when I couldn’t survive on my own.

But your love wasn’t enough.

I thought love would heal me. I thought faith would restore me. I thought hope would find me. And maybe it did. Maybe it kept me alive, but fifteen years worth of internal contortions, intense pain, and battles that raged on in the privacy of my head were no match for the virtues I tried so desperately to cultivate.

Three years ago, after an intense, heart-breaking revelation, a realization that contradicted my current reality and crumbled whatever facade I had built, three years ago I began to destroy the one thing that had kept insanity at bay: My marriage.  My marriage began to crumble and yet you still loved me.

For you were my friend who peered into my eyes, saying you still believed in me.  You were my brother, knocking on my door late at night to see if i was doing okay. You were my mom and dad, insisting love above all else, no matter who I was and where my life would lead me. Finally, you were my husband, with tears streaming down your face, willing to let me go
if it meant my happiness. But your dear, tender, compassionate love. It wasn’t enough.

And that’s when it happens.

When all the love in the world tries its best to keep you afloat and still, love is not enough, you find yourself standing on a ledge,  so afraid to hurt the ones you love even more and at the same time unable to tolerate the torment of a person you have become.  And you ask, over and over: When love seems to fail, where is the answer?

Even in the best conditions, love is not strong enough to take on the gripping, thorny reality of an untreated and undiagnosed illness.

We want to live. And the majority of us are willing to learn a new way.  After fifteen years of therapy and medications, there, in the psychiatric unit of a New York City hospital, I received a diagnosis I have never heard before. Out of the 9 symptoms of Borderline Personality Disorder, I had 8 of them. It was only after receiving treatment specific to BPD that I began to learn how to live.

Living did not come naturally to me. I had to learn things that seemed foreign to me, emotions that had actual names. Life, to my surprise, had structure and I was able to weave myself around that structure.

It was only then that I was able to open myself to a love that healed, a faith that restored and a hope that I could share with others. But, you see the thing is, I’m only one person. and there are 18 million others out there just as well, we, of the living, wishing not to suffer in vain. There’s hope, but the hope isn’t turning into action fast enough.

Because even though there is a new reality, a new cause for hope; that there is treatment and people can learn to live and do get better — there still is the bitter reality of our suffering. People wait months, even years for spots to open up at local hospitals in order to receive treatment that works. People can’t afford private treatment when they’ve been out of work. People are yearning for support across the country and around the globe desperately seeking others who understand a suffering that seems to be etched in stone and forever shapes our future. They all ask us — in one way or another, to anyone who will listen:

Please, teach me how to live.

It might be too late for Heather, but I made a promise to her mother that she did not die in vain. For her and countless of others who have lost their lives; may their deaths serve as a call to work for those who are still alive but barely living.

To those who fall to their end; to those who feel they have no more options; to those who live in a body that conspires against them; they need to know that no matter how desolate you may feel how hopeless a situation may be, no matter what has been done, it does not define us completely. Even in our darkest hours of despair, in our sorrow and confusion and fear, we — BPD and all — can never be thrown away.

And so let us dedicate our lives to this, to this unfinished work. Let us find something that moves us to listen closer, deeper to the story of borderline personality disorder. Teach us how to live.

Thank to NIH and NEABPD for allowing me to speak to you  today. And thank you for teaching me how to live.

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10 Comment(s)
  • Diane Posted January 24, 2011 10:24 pm

    This was a great! I remember how inspired I was the first time I heard you speak at Yale’s BPD conference. It was listening to you and Kiera that allowed me to make the decision to speak at the conference in 2009. You guys gave me hope that I could get better. I have been out of DBT for a year now and I am doing well. Without that treatment, I do not know where I’d be right now. I just finished reading Kiera’s book (which was enlightening, inspiring, amusing and heart wrenching), and in the back she listed the documentary you are doing. I think that the two of you are so brave and I thank you for doing the work you are doing. So many need help and you are helping to bring about awareness and getting rid of the stigma of BPD. Let me know is there is anything I can do to help and good luck with your training.

  • Diane Posted January 24, 2011 10:24 pm

    This was a great! I remember how inspired I was the first time I heard you speak at Yale’s BPD conference. It was listening to you and Kiera that allowed me to make the decision to speak at the conference in 2009. You guys gave me hope that I could get better. I have been out of DBT for a year now and I am doing well. Without that treatment, I do not know where I’d be right now. I just finished reading Kiera’s book (which was enlightening, inspiring, amusing and heart wrenching), and in the back she listed the documentary you are doing. I think that the two of you are so brave and I thank you for doing the work you are doing. So many need help and you are helping to bring about awareness and getting rid of the stigma of BPD. Let me know is there is anything I can do to help and good luck with your training.

  • Dena Agapion Posted January 26, 2011 4:22 pm

    Amanda that was GREAT! You have come so far! I’m so impressed with your words and your strength! Keep up the wonderful work!

  • Dena Agapion Posted January 26, 2011 4:22 pm

    Amanda that was GREAT! You have come so far! I’m so impressed with your words and your strength! Keep up the wonderful work!

  • Charlie Coull Posted January 28, 2011 9:28 am

    Amanda!! Wow . . . I’ve got goosebumps. Your words are beautiful and your story is courageous. Keep doing what you’re doing . . your words are inspiring. There should be more people like you in this world. love ya friend, charlie xo

  • Charlie Coull Posted January 28, 2011 9:28 am

    Amanda!! Wow . . . I’ve got goosebumps. Your words are beautiful and your story is courageous. Keep doing what you’re doing . . your words are inspiring. There should be more people like you in this world. love ya friend, charlie xo

  • Colleen Posted April 21, 2011 12:06 pm

    I found your site while searching for information about BPD. I’ve been struggling with misdiagnoses and a variety of wrongfully prescribed medications through 10-15 years of BPD symptoms since I was a little girl. I’ve always been treated by ignorant practitioners who focused only on the symptoms of the side-effects of my BPD like the anxiety, the “OCD-like” obsessions with control, or the sadness, but were either unwilling or unable to tackle the disorder as a whole. It wasn’t until this year that I did my own research and discovered this illness, and realized that I suffered from every single symptom, that I felt some hope. Lately I have been having a lot of suicidal thoughts and more debilitating “bad days” of anger, depression, and hopelessness, and coming across your speech today meant the world to me. There is something so therapeutic about listening to the experiences of others that are so similar to my own. I feel so much less alone. You will probably never see this, I don’t know, but I just wanted to communicate what I was feeling in the moment. Thank you so much for having the courage to step up and give my feelings a voice to the world so that I could be heard. It really brought tears to my eyes.

  • Colleen Posted April 21, 2011 12:06 pm

    I found your site while searching for information about BPD. I’ve been struggling with misdiagnoses and a variety of wrongfully prescribed medications through 10-15 years of BPD symptoms since I was a little girl. I’ve always been treated by ignorant practitioners who focused only on the symptoms of the side-effects of my BPD like the anxiety, the “OCD-like” obsessions with control, or the sadness, but were either unwilling or unable to tackle the disorder as a whole. It wasn’t until this year that I did my own research and discovered this illness, and realized that I suffered from every single symptom, that I felt some hope. Lately I have been having a lot of suicidal thoughts and more debilitating “bad days” of anger, depression, and hopelessness, and coming across your speech today meant the world to me. There is something so therapeutic about listening to the experiences of others that are so similar to my own. I feel so much less alone. You will probably never see this, I don’t know, but I just wanted to communicate what I was feeling in the moment. Thank you so much for having the courage to step up and give my feelings a voice to the world so that I could be heard. It really brought tears to my eyes.

  • Kirsty Arevalo Posted May 3, 2011 8:03 pm

    Hi:) I just want to give you a HUGE ((((HUG)))). Your speech moved me. I have suffered with BPD for most of my life. For as long as I can remember, I have been suffering. I finally received therapy this past year and recently graduated from a year long DBT program. The waiting list is ridiculous and the only reason I was fortunate to get in as quickly as I did is because I was unfortunately considered high risk due to my self harming issues. I want so badly to help others, and be involved. I live in Canada. I am ready to speak out against stigma. I just don’t know where to begin. You are an inspirations.

  • Kirsty Arevalo Posted May 3, 2011 8:03 pm

    Hi:) I just want to give you a HUGE ((((HUG)))). Your speech moved me. I have suffered with BPD for most of my life. For as long as I can remember, I have been suffering. I finally received therapy this past year and recently graduated from a year long DBT program. The waiting list is ridiculous and the only reason I was fortunate to get in as quickly as I did is because I was unfortunately considered high risk due to my self harming issues. I want so badly to help others, and be involved. I live in Canada. I am ready to speak out against stigma. I just don’t know where to begin. You are an inspirations.

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