Life Experiences that Define You [Part II]

I realized I created a post asking others to define their life experiences but forgot to share my own. My story begins when I decided to sign up for a 545 mile bike ride, perhaps to find myself. Little did I know three months before the big ride I'd be partially hospitalized at a psych hospital. The ride gave new meaning to my journey. I wrote the following passage a week or so after the ride.

On the last night before our final final ride we filed on to the Santa Barbara beach, creating a 2500 candle light vigil. We stood there in a circle, silent. Men were crying, others were consoling. Jason, a comedian i walked with to the beach that night said to me in a whisper, "You know what? you're the enlightened one. We... I have to be here. Of the eleven friends that are here with me tonight, nine of them are HIV positive. My best friend died two years ago and I rode with his mom the next year. I'm still angry that we continue to do this every year. It should be over by now. But here you are coming all the way from New York not knowing anyone on this ride...you chose to be here when you didn't have to. You should be proud of what you've accomplished."

One by one, candles were walked to the shore and extinguished with those little waves that roll to your toes. Jason told me it represents the life of someone living with HIV: slowly you see them walk away from you, and then their light is gone. He said to me, "Now I have to go home a deal with how fucking angry i am." I told him that maybe he can let go of his anger as he distinguishes the flame. He tried it. He came back from the shore and gave me a hug. We went our separate ways. Afterwards i stood there on the beach by myself and looked up and out onto the stars and cried. Whatever was in me, I just cried it out and gave it up to my God.

That is the experience I remember but rarely share. I thought of Shaun* that night. I thought of him during the ride, when the hills were tough. I asked him for courage and I hoped I was doing him right by this ride. And when i was alone on the bumpy road and the meds weren't working I imagined a hug from a loved one. That's what it took to get me through. When everything was depleted, all I needed was a hug. Everyone in my life somehow became a part of that ride. Whether I was happy, exhausted, in awe or trying to get by, I felt the most alive I've felt in a very very long time.

I read in a magazine article interviewing Archbishop Desmond Tutu that a person is a person through other persons. I have always searched and looked far and near for my meaning, my way, my voice. But now I feel i have actually covered some distance and learned something. Tutu says it again, "I need you to be all of who you are in order for me to be all that I am." That is what I've come away with on this 545 mile ride.


*Shaun was a student at my alma mater. He was born with AIDS. Although I didn't attend school during the same time as he, my mentor/teacher, Fr. Albert, worked closely with him. Both of his parents died from AIDS when he was little so his grandmother took care of him. Then she past away from cancer his junior year. Fr. Albert helped him find a foster home and brought him from school to home or to the hospital when he was too weak. A few weeks after he graduated, Shaun past away. Fr. Albert gave the mass at his funeral. I didn't know Shaun personally, but Fr. Albert helped me get through so much over the years I wanted to give something back to him. Riding in his honor was my gesture.

The Night I Met Bill Drayton

"Mr. Drayton, my name is Amanda, it's an honor to meet you."
"Amanda, please call me Bill."
"Bill, your ideas has given me the courage to be a changemaker and take a chance on what I believe in."
He looks at my badge. "RethinkBPD?"
"It's a cause for mental illness."
"BPD, like Borderline Personality Disorder?"
"Yes! I was only diagnosed two years ago. I spent half of my life suffering. If only I knew earlier. That's what I hope to do with my project... I just don't know if I have enough in me to take it on. Is there any advice you can share with me?"
"Well, listen, BPD is a very serious illness and you have a lot to offer in terms of change. This is definitely something that's needed... you have a voice."
"How do I do it without any kind of funding? That's my biggest problem."
"You just do it. You don't need much. You start small, like so many others at Ashoka. There's a definite need out there. You'll hear the response."

Thank you Mr. Drayton, for all that you've done. You've made a big impact on my life.

The Good Fight.

In the boxing world, they often quote St. Paul's letter to Timothy, just before he was about to leave them and move on to his next mission:

I have fought the good fight. I have completed the race. I have kept my faith in tact.

Urges are like waves in the ocean; they come and go, some more big than others. Each time a wave passes I write a couple of these words down. My therapist would call it a distraction technique, but mostly these words allow me to see myself as a fighter with a choice to carry on. When it feels like there is nothing to fight for nor a point to the whole struggle, I become an active participant in my own life by choosing to endure through the pain. Dealing with urges are exhausting and often an uphill battle, but words like fortitude, perseverance and resilience soon become part of your make up. Somehow you have gained the courage to continue on, feeling more confident that you'll find yourself again at the end, weary from the fight, but faith in tact.

Special shout out to Trinity Boxing Club for helping me find the fight in me.

My Little Stint at Yale...

UPDATE: You can watch the video of my speech here.

Last Friday I had the privilege to be asked to tell my story in front of 325 people at Yale University. Last time i spoke in front of a group, besides my wedding, was in my junior year of high school!... 13 years later I stood in front of a room filled with MDs, PhDs, therapists, parents and those who live with BPD. It was a bit surreal to stand before such a great group of people.

How strange for me to say — after all these years of not understanding why — that perhaps I made a bit of difference, if just for that very moment. It's exciting and humbling, scary and validating, all rolled in one. I do not know where this will take me or what it all means. For now, I'm just thankful that I had the opportunity to share my story.

And the speech? Well, it's rather lengthy as I had to speak for 10 minutes, but if you read it, I'd love to hear what you think.

Like many of you here, I am trying to contribute to this new movement, this shift, this incredible ground-swelling of progress here, within the BPD community. The question of growth really is a question of leadership. Not in the way of politicians or CEOs or directors of organizations — yes — those are all very important.

But today I am talking to you the individual: the practitioner, the doctor, the therapist, the loved one, the parent, the teacher, the friend, even you who live with the same disorder as i do. You see, without you, i would have never made much of my life. I wouldn't have gotten through much of this strife without your compassionate ear or words of hope. My goodness, though, how much I have asked of you in these past thirteen years; you who have encouraged, listened, even cried with me. and I am incredibly indebted to you all.

But still, year after year, week after week, day after day, it would come back. it would come back so hard. with every crisis my courage to die increased. with every doubt my need to match the intensifying pain grew. I needed something harder, a drink, a few drinks, physical pain, wounds that would not show but would take the edge off...

I could not tell you who I was at those times; it changed every day, every hour, every minute it changed. I could not tell you the number of times I'd find myself in a bathroom stall crying this silent wail, holding a belt in my hand. I just wanted out. I just wanted out... and over and over and over again, I had to ask for your help. i'd demand from you this meaning to continue on. I'd demand that you give me something to hold on to. just to stay with me until I fall asleep. just to tell me every thing's going to be okay.

You see, I was not the token patient that comes up in research papers, studies or books; but those lurking around just below our very own radar. I am that person. People did not see my distress, perhaps because I kept it so well under wraps for the most part... But Depression, Attention Deficit Disorder, Post Traumatic Stress Disorder, Bipolar Disorder... even the idea that I had been abused as a child... these were the things impressed upon me, year after year, over and over again... none of them made sense.

Finally you told me I needed help, help you couldn't give or wasn't able to give. help no once a day anti-depressant or once a week therapy session could give. It was the most difficult thing you told me. the most difficult piece of reality i had to swallow. And on Valentine's Day... only a year ago, I checked myself into a hospital.

i was scared, no doubt. it was the one place that I thought would swallow me whole... but slowly, i came around. there were other people there like me, and the social workers and doctors were all working together. Day by day i became more able to identify my emotions, understand my triggers, even work through my urges. It was here that i finally let my guard down and let people in and be strengthen by them.

about a month and a half later, my social worker at the program, she sat me down and opened this rather large, biblical looking book. Thumbing through the pages she began to read these sentences aloud, asking me if I identified with any of them. One by one, she listed each of the criteria and by the ninth bullet point I thought she was reading my autobiography.

"Amanda," she said, "have you ever heard of Borderline Personality Disorder?"

Never in those thirteen years of treatment have I heard those three letters, BPD, put together in front of me.

but BPD... how much it made sense. It was like a breath of fresh air. I learned to think pro-actively, pragmatically, concretely; to stay in the here and now instead of the past, to assess, to learn, to build, to track, to prioritize. Finally it all started to make sense... And even with all the skills and concepts and progress I made in only one year, i learned something even more profound than all of that.

You see, the ironic thing is, the enlightening thing is, is that being diagnosed with Borderline Personality Disorder did not give me the sense of doom i hear that had once prevailed. the diagnosis of Borderline Personality Disorder has instead saved my life forever. The crises, the doubt, the intense emotions — they are all still there. But what differentiates me now from those past thirteen years is that just by the very label of BPD I can choose to step outside of myself. It does not consume me. It is bearable. It is temporary — these feelings... I am not my feelings and I am not crazy. I can never be as hopeless, as desperate, as alone...

I am not alone anymore.

That's what has been so crucial for me to remember and what I want to impress upon you today: that by virtue of diagnosis — whether we know it or not — we become a part of this community. and this community holds hope. However i have found my way up here today, speaking with you, we as individuals — and as a part of this interconnected movement of research, treatment, of grass root programs and support groups, especially for those who have this disorder — we must realize our potential to become enlightened leaders. We have the opportunity to challenge both the bold and subtle biases, prevailing stigma and misunderstandings. We have the opportunity to bring our disorder out of the fringes and into the center of discussion. We have the opportunity to find solidarity in each other and not be ashamed of who we are and what we are diagnosed with.

We become the very hope we are looking for.

So today I stand before you, after a lifetime of not understanding why I needed to continue to exist, to say that my life — just like yours — matters more now than ever before. There are very few opportunities to create sustaining impact and drive change in the world. We must become enlightened leaders of this new movement, this shift, this incredible ground-swelling of progress here, within the BPD community.

There's this great quote that I've always kept close to me: a person is a person through other persons. For the past 29 years, I have searched for my way, my voice, and questioned my existence and value as a human being. Becoming a part of this invaluable and necessary community has allowed me to understand this journey I have been on and, more importantly, to discover answers to my long sought after questions. I would like to leave with one last quote, I need you to be all of who you are in order for me to be all that I am. Finally, I realize how far I have come.

Thank you.

Cheerleading yourself late at night when you don't think you can do it.

i can do something about it. i don't know why it has never come across that something could be done. i don't know why before it would just play in my head and i would become a victim. finally i can empower myself and not be afraid of my emotions. finally i can have some say in what plays out in my head. i, for the longest time, froze... voices would yell at me over and over, daring me to take that next step. and if i ever did, i thought i would just fall apart; chaos. and i'd never return.

in other words, i was afraid i'd go crazy.

it's not the best thing to admit. but i think that is what prevents me from taking charge of my life. that if i'd do anything to the fullest, i might wander too far off and not find myself again.

i don't know where that rationale came from. perhaps when i wrote long papers or drew for six hours straight i began to lose ground. when i gave it my all, something chemically changed in my brain and it was easy for me to get lost in my head.

My therapist asked me what i want. what i want to do with my life i guess. i don't want to be afraid. all my life, the worry thoughts are there. it's what prevents me from giving it my all. i want to dedicate myself to something and find the fuel to fan the flames. to continue to work on something that i don't have to constantly ask someone to believe in me in order to do it. i want to believe in myself, in what i am made of. to know that all i need is already within me if i'd just dare to use it. i wonder how many people go about their lives never realizing what they're made of. how do i believe in myself. all this stuff i've accomplished and gone through and i still can't say i'm good enough.

i want to follow through with my life and stop selling myself short.

i always need people to help me believe in myself. to validate me. to say, you're doing a good job in a way that was true and not fake because that's what's you're supposed to do. i want to ride on that energy that others can give just by being in their presence, inspiring me to run (or cycle) that extra mile. like that person in the subway car who told me "you can step on my shoes anytime, if you're reading a book like that." keep up the good work. do it, do it. have fun with it. have a ball. laugh at yourself and still keep on going. take the bull by the horns be corny be the damn o captain my captain. be that person who inspires others and act the way you want to act. be a ham. be serious. be funny. don't care what others think. because you know you're a good person and no one should take that away from you. you're a good person, god, i can't even say that without cringing, like really? i'm a good person? how the heck are you supposed to do anything if you don't fundamentally think you're good?

and good? well that equals worthy. how do you know you're worthy to do the higher calling. how do you know you're worthy to be heard. you're worthy to speak and listen and engage in people you think are at a different plane that yourself. dammit, take charge! this is what life is about! ask people with authority!

yes you'll make mistakes, everybody does. learn from them, don't cry about them. pick yourself up and try again. do you need someone to tell you that? do you need someone to coach you to try again? do you need someone to tell you your worthy of trying to make another mistake again until you get it right? no one ever gets it right. you just do what you can do and hope it makes sense to other people. not in your lifetime. but in the end. ultimately you have lived your life to the fullest.

About a Dog

Sometimes we just have to pause, catch our breath and remember the important things in life. I've been struggling, trying to find the right words to explain what has made me believe that I can be a part of the generation that change things. I've looked everywhere for inspiration and suggestions but sometimes everyday, ordinary things happen and you just say, f____ it. Life's too short to search high and low for the right words.

And so, my dog died today. We knew we had to let him go as it would be selfish of us to have him suffer any longer. Sunday night as I said my goodbyes and kissed him on his forehead I whispered to him, hey, you come and meet me when I get up there, okay? You promise? That night I crowned him to be my very own Virgil as I sail along into the next world. It comforted me to think I'd see that bugger again. But somehow those few words also meant I would have to live out my life. Not that many people think of things like that — even if your very own dog dies — but I do. It wasn't too long ago that I couldn't see anything but the very end.

My outlook was bleak. Each day was an internal struggle to keep myself alive. The pain was so great I was no longer safe. I began to drink heavily. Even if I was sober, I would be afraid to drive. I stopped wearing belts and pens, pencils or kitchen utensils became potential weapons. I was in such utter turmoil I began telling my dear friend all my passwords to my finances and personal matters. She had the wisdom (or fear) to tell me I needed help, help more than my usual the once-a-week therapy sessions and daily antidepressant could do. And at that, I checked myself into the hospital.

A month and a half later my social worker took out what looked like the bible for shrinks: the DMS-IV. She began to read these sentences aloud, asking me if I identified with any of them. One by one, she read each criteria and by the ninth bullet point I thought she was reading my autobiography. Amanda, she said, have you ever heard of borderline personality disorder?

From twelve years of psychiatrists, psychologists, social workers and meds I have never heard those three letters, BPD, put together in front of me. Yet it has only been eight months since I left that hospital (the one place I thought would swallow me whole) and my life has completely turned around. The program has helped bridge the gap of what once was to what I've always thought was within me. They have given me the tools, confidence and understanding i could have not otherwise known. Without the fellow patients, social workers and doctors working together i wouldn't be able to identify my emotions, understand my triggers and work through my urges. It is here that I listened and was listened to with compassion, kindness and good will. It is here that i let my guard down and let people in and be strengthen by them. It has truly been a complete and total experience and i will always take it with me. So much so, I've begun to help others in the same predicament I had found myself in. I still struggle to get through the day, some more difficult than others, but it can never be as worse than the all those years before my diagnosis.

If it weren't for my crisis (and for my dear friend), I don't believe I would have received the proper treatment. The hardest part of living with BPD is getting the diagnosis. Many end up misdiagnosed, undiagnosed, over-medicated and even worse, receiving treatment that exacerbates the very symptoms it is trying to manage. This is why I've been wanting to be an agent of change. There is so much that needs to be done in this fairly new field. We ourselves are the only ones who can make that first step. I know now that I am not alone in rebuilding my life, learning new coping skills and yes, just plain and simply, living.

Storytelling

Speaking of Dead Poet's Society, it's been 12 years since I've last stepped into my eleventh grade English class. I don't remember much of Beowulf, Chaucer or Shakespeare but I can still recite a Keats poem. My English teacher adored this poet so much he traveled to Italy just to get lost searching through the entire cemetery for this man's tombstone. If my teacher had to die a tragic death, he hoped it would be just like Percy Bysshe Shelley's: body washed upon the shore with an open volume of Keats's poetry, stuck in his pocket. It were these stories that I remembered most... stories that came alive with personality, character and humor -- all in the form of a narrative which was illuminating, engaging, and memorable.

I can't deny the emotional impact my English teacher had on not only my love for Romantic Era Poetry but for life itself. All his lessons engaged us. We never questioned it; he had heart. He, to our junior year class, embodied leadership in action. All of us agreed we'd do anything for him. I realize now you can only inherit that kind of passion through a true and real connection, something stories have the keen ability to do. And with that, true leaders use storytelling to cut right to the heart of the matter... so much more than any textbook can do.