I saw a video on Youtube recently which was shared on a Facebook page called “People that inspire humanity”. The video was a short documentary about a girl who suffers from a severe form of autism. It documented her life, a very difficult life, and her family’s difficulties. This young girl, now a teenager, had been unable to communicate to her loved ones her entire life. Her parents, despite everything they had been told about her condition, despite her extreme behaviour and seemingly hopeless cause, never gave up. They believed they saw behind her eyes, I suppose you could say, her soul. They saw life in her and they saw something amazing in her. After many years of trying to help this girl, after being told she would be better in an institution, that basically she had no intelligence whatsoever, something remarkable happened. A psychologist involved with her care taught her to use the keys on a laptop. If she wanted anything, she had to sit and write. And after many hours of practice, and after making some basic words, one day she was able to send her dad a message on Skype. She said “dad I like it when you read to me”. Her father said it was the happiest day of his life. He had been reading to her for most of her life and he didn’t know in himself whether she knew what he was saying, he just hoped.
This young teenage girl has now become so adept at typing that she has written a book. For some researchers in the area of Autism, what she is able to do is give conclusive evidence that she is there, that she is cognitive, that she feels and that she is alive, very alive. She describes what happens in her brain, in her perception and it is truly remarkable. She says when she looks at somebody, she sees the image of them magnified a hundred times, her senses are overloaded, it is often too much to bear. This young lady now has millions of followers on Twitter and is without doubt a living inspiration.
Sometimes I feel like I cannot communicate to people what it is like to live with BPD, PTSD, Depression, a mental illness. In particular to people I love, people I hurt, people who walk away because they cannot stay, because perhaps their own senses are overloaded. I want to tell you about two things, the first is about the extra 20% and the second is about something that happened recently and then I want to tell you why it is so important to not give up on the person you love and how you can help them.
If you look up BPD on Wikipedia there is lots of helpful information but one statistic that stands out to me. “an average person feels an emotion for 12 seconds and somebody with BPD feels the same emotion for 2 seconds longer, that is 20% longer” now if you think about how many emotions you feel throughout an average day, happy, sad, indifferent, joyful, annoyed etc. then let’s say that’s a few hundred emotions a day. I have felt 20% more emotions than an average person, or, I have felt each one longer and over time, over many months or maybe even years, I have felt 20% more emotion than an average person. What this means is that I feel fear longer, I feel sadness longer, I feel shame, humiliation, guilt, loneliness, I feel all of that 20% more than you. But the important thing to understand is that I do not choose to feel those emotions longer. My brain interprets emotion differently to yours. My emotional senses are overloaded. And because of this, I have coping mechanisms that you don’t have, that you don’t need and behaviours that make no sense, that make you despair at me, as did the people around the girl with autism.
There is a plus side to this and it is something I am very grateful for. I feel positive emotions for 20% longer as well. I feel love, compassion, happiness, joy, I see beauty in things, with a depth that you may not have experienced. It is the part of the condition that makes me “sensitive” that makes me caring, understanding of others, hopeful and kind. It is because I feel this spectrum of emotion that I am who I am and yet it is this same overloading of feelings that makes me very confused about who I am. Nobody is more upset than me after I have behaved in a way that has hurt you. I feel regret very deeply and more often than not I feel despair because I cannot make you feel what I feel. I cannot show you, I cannot explain properly, I am very alone a lot of the time.
Now I want to tell you about something that happened this week, something which disturbed me and something which at the same time gave me hope, that I may one day not have the extra 20%, that I may feel things as you do. I was in a mental health setting and I heard somebody in extreme distress nearby to where I was. This person was screaming with such emotion and pain that it would have been easy to assume they were in extreme physical pain, extreme trauma. And the things, some coherent and some not, that I heard, literally broke my heart. This person was screaming about things that had happened to them, and these were things that had happened to me, these were things I know myself to have screamed. And I could have been annoyed, I could have wanted to get as far away as possible from this screaming, from this emotional outburst, and I did, I did want to leave but my instinct, my compassion, my “sensitivity” wanted something else. I wanted somebody to stop this person, to hold them back from themself, to take the pain away. I wished for an injection, a tablet, I wished for them to sleep, to tire and sleep, but mostly I wished I could hold this person very tight, to tell them they were safe, they were loved, and they would be okay. Because that is what I know this person needs. I know it is what they need because sometimes it is what I need. Sometimes the things in my mind are so overwhelming, the behaviours are so extreme, I need saving from myself, I lose control and I do not know who I am anymore.
I am very lucky, like the girl with autism. Her father never gave up on her, and my dad has never given up on me. Many people have not given up on me, when all the logic in the world tells me they should. Sometimes, when we don’t know who we are, we don’t know why we are doing what we are doing, it just takes a person with hope to see something behind those eyes, something we cannot see ourselves, to save us. To tell us that we can be okay. You know if that girl could sit at her laptop day after day trying to express what she feels, and finally one day, say something to show that she was alive, that she was in there, then I thought, maybe I can do that too, maybe one day the people that have given up or don’t believe there is a good person in there, maybe they could see, maybe they could understand.
I very much miss the people who have walked away or have stepped away and I do not know the way to heal everything. I am learning to heal myself first so that I may one day be able to heal my relationships with the people I care about the most. But you know when I try to express myself, if there is one thing I can ask you to understand, it is that I am living with an extra 20% of everything, good and bad, but that the rest of me, the rest of me is in there, and sometimes you need the people who know you the most to remind you of what the rest is, to keep on showing you reasonable behaviours, reasonable emotional processing times, to help you back to yourself. I wasn’t born with this disorder, and I am not a victim. Life came at me in a way it might not have come at you, my experiences changed me, for the worse sometimes, but for the better sometimes as well. And you, the people I love, the people that love me, are part of my future, part of my potential safe and balanced experiences to come, that’s what I hope. Cause I do have hope, 20% extra some days.
I have undergone 6 months therapy for PTSD which has helped me to come to terms with traumatic events that occurred in my life. I am currently undergoing a 6 month DBT program and hoping to be able to live a normal, balanced life in the very near future. Thank you for listening.