Shhh...Please Listen to Me

Why should I read this book?

I have worked in human services for over 30 years, and I continue my commitment to serve and advocate for individuals that feel invisible in our society. Most of my career was spent serving individuals who have struggled with living with a mental illness and/or some type of addiction disorder. This career has been more inspiring than I could ever have imagined when I was in my twenties.

My evolution in this field has taken me to the lowest of lows and the highest of highs, from hearing and feeling the vicarious pain and torture of others to the joy of celebration in the lives of others. Not all relationships started out positive, but over time I have gained understanding, passion, and compassion for the daily physical, medical, emotional, and social bravery faced by such courageous individuals.

So to honor each person who has crossed my path, this idea popped in my head and stewed. I spoke to my confidants of writing a book, and after receiving affirmation decided to move forward. I have spent months reaching out to individuals who may be willing to share their story. The stories are from personal interpretation and experience: no clinical input, no expert opinions, and no challenges to the factual information. These stories are told through oral narration, writing, or electronic media. The main goal was to offer each person a level of comfort, as dictated by each person.

Lastly, as a provider, administrator, therapist, and teacher, this is my legacy to individuals who have taught me more than any textbook. So as the humble author, I thank you all for coming into my life.

INTRODUCTION

This book was written by many people who chose to share their personal stories of how living with or caring for a person with a mental health condition has affected their lives. Do not assume that this book is full of negative or sad stories; in fact, just the opposite is true. None of the people I met spoke with self-pity or regrets. In fact, several individuals would not trade their lives.

Let me begin by informing you that each person consented to having their story told to you (the reader). In fact, in most instances I was just the scribe for individuals as they told their story. My role was only to transcribe and ask questions to clarify the story. This book is not about clinical impressions or verification of the facts that were stated; it is about trust in one’s story as told and experienced by each individual.

These stories were told by courageous individuals who once held their stories private but decided to come public, each for his/her own personal reasons. Names and other identifying information have been changed in many instances.

This book was written to educate family members, friends, and supportive others on how to follow in the shoes of another. We need to listen and learn from each person, hopefully realizing that each person has courageously conquered his or her life. Be inspired by these individuals.

More than Surviving, by Peg E.

mixed media of collage and paint, May 2013

To be, or not to be, that is the question:

Whether ‘tis Nobler in the mind to suffer

The Slings and Arrows of outrageous Fortune,

Or to take Arms against a Sea of troubles,

And by opposing end them: to die, to sleep

—WILLIAMS SHAKESPEARE, Hamlet

Peg E.’s Story/Autobiography

My Situation: Whether ‘tis Nobler in the mind to suffer

I am in a relationship with a man who won’t touch me. He will hug me briefly or occasionally. If I initiate a hug he will wrap his arms around me, but he is not affectionate toward me in any way. I have married my father.

Last night we were out on the porch it was a cool night, the kind that beckons fall’s arrival. The kind of evening that invigorates you with its cool breezes and the beginning scents of the elemental changes, leaves turning and the hint that fall’s decay and colder nights are just around the corner. The moon was quietly peeking out over the clouds. He had just sat down on the outdoor couch with his arm sprawled across the back. It was an open, relaxed, welcoming position, so I went over to sit next to him. As I sat, I put my arm around him and rested my head on his chest to share briefly in the lovely evening and the moment.

Here we go with this shit, he said in a somewhat vehement tone.

Now I know he doesn’t care for this kind of expression, but even in knowing that, his response was abrasive and hurtful.

I joked back and said, Oh, come on, you can deal with it for 5 or so minutes in exchange for the half hour I rubbed your back earlier. He sat there still as a stone and I became numb. The brief nanosecond of warmth and inner glow I felt at being close to him vanished and was replaced with physical and emotional numbness. My intellectual side finds comfort in the irony of my relationship.

He is the one person on this earth whose touch feels good, whose touch doesn’t cause me to recoil, feel sick to my stomach, or feel numb, and he can’t or won’t show affection toward me. We knew each other in middle and high school but reconnected one year when I went into the small store he owns in our town.

The day we reconnected, I walked into the store nervously looking around, and when he saw me he smiled and nodded while finishing up with a customer. I poked around until he was done. He came out from around the counter, walked over to me, and enveloped me in the last thing I expected and the first thing I always avoid, a hug.

As his arms came around me, I braced myself for the yuck (ilk) that comes with touch; however, this time I felt something I had never felt before: warmth. There was a glow inside me, a feeling of kindness, warmth, inner peace, and oh-my-fricking-goodness, it felt good. In all my 30+ years of life, touch has never felt good. Touch is painful, nauseating, or just tolerable, but never once has a hug given me a good feeling. Never had a stranger’s touch felt good. I was instantly curious about this man and his touch.

And here we are many years later and a great deal of ups and downs in our relationship. The baggage we both carry is deep and challenging. But he is a good man, and we laugh and enjoy each other. The irony and the sadness for me is that the one thing he gave me that first time we met, the profound first time warmth of touch, is something he will not or cannot share with me now. I am sad sometimes because I cannot let go of the hope it filled me with.

About me: Or to take arms against a sea of troubles

I sleep with my back to the wall and always with a pillow against my back so I feel protected. In public I am aware of each person in proximity to me at all times. I am obsessively clean and struggle when my routines are disrupted. I rarely ever let someone else drive. In a restaurant I will only sit where I can see the whole room. I cannot sleep with an open bedroom door. I obsessively lock all the doors in my house on my way up to bed (4+ locks); this includes my bedroom door. Most touch is barely tolerable, rarely does touch feel good. Some touch makes me sick to my stomach and I viscerally recoil. I struggle with being in the world, and some days I wonder if the struggle is worth it. I have been in counseling/therapy off and on for almost 20 years. I have considered suicide. I believe deep inside I deserve suffering and pain. I am extremely sensitive. I pray for animals on the side of the road, rescue grasshoppers, spiders, and bugs that find their way into my home. And someday, when I let go of what I am, I [will] become what I might be (Lao Tzu).

It is a practice each day of letting go, and I pray someday, I can just be.

In the Moment: To be…

A year ago, while visiting with my boyfriend’s family, we went out on a drizzly, rainy night to a place along the shoreline in Connecticut for dinner. It’s an informal place where you order at the counter, wait for your number to be called, find tables on your own, and bus your own trays when you are finished. We traveled in two cars, as there were about 10 of us total. The place was packed when we got there and it was chaos. We shuffled into line, were herded toward the counter. Confusion abounded, this one asking that one what they wanted, shouting a bit to get them to the counter to order. I got a little lost in the shuffle and stayed off to the side. I’m also not crazy about crowds.

It happened without warning the minute they ordered and didn’t include me. I shut down. They didn’t really forget me, because in a moment’s pause they shouted over to ask what I wanted, but I just stood there in my peach rain jacket shaking my head saying, Nothing, I’m not hungry. Thanks. That response earned a look from my boyfriend before he turned, shaking his head because he knew.

While the external observer would note that I truly was not overlooked, in that instant it hit a deep vein in my heart and it was how I felt. I felt forgotten, ignored, unimportant, and like an extra thing that didn’t belong. Intellectually I knew I wasn’t. Intellectually I knew it was the chaos of a packed restaurant, of herding and shuffling ten people, two kids, two elderly grandparents with one person paying … but when that moment happens, my body physically, viscerally shuts down.

Inside, I am gone. I can’t engage. I get quiet. I can’t eat, I can’t make eye contact, I keep my head down. And for me, the worst part is that my normal, outgoing, gregarious, smiling self changes instantly, and no matter how my intellectually adept side attempts to process and talk my emotional self out of the darkness that seeps throughout, I cannot stop it. I cannot even pretend convincingly that everything is fine; people know something has shifted inside me. My every inside tells me to run, to shut myself away, leave. That is what I would normally do—leave work; shut myself away from the world in my home—but in a social situation I can’t always escape.

My shutting down becomes a giant weight that presses on everyone and it changes the atmosphere of the group I am with. They can feel it, the uncomfortable silence that envelops me like a black fog. It makes me want to cry, because I can’t stop it, and in that moment I become a used, discarded, unwanted 5-year-old child again, numb to the outside world.

The smile I put on only lifts the corners of my mouth and I say, I am fine or I have a headache and don’t feel well because that is something people understand. What people can’t understand is what I have lived through and what I battle with on a daily basis.

My best friend, my boyfriend, will say, Peg, are you getting funny? That is what he calls it. I have told him it is okay to ask me that, because sometimes it can help me come out of it. But most times nothing helps, and when the voice in my head starts telling me I don’t belong, I don’t deserve, I’m not important … the darkness rolls in and envelops me completely.

In the Darkness of My Mind: or not to be

While encased in that black fog and numb to the outside world, the world in my head churns like a twisted, swirling circus of mad ringmasters yelling derogatory, invasive things at me. The world becomes magnified in a twisted evil way and I sink further into external numbness while the fight just to function starts, each second a mind battle against the slow descent into darkness.

Most moments come without warning. The dark days when I wake up in that place because of a nightmare I have had a thousand times, those are the hardest. On those challenging days the abused child within me wants to die and take the adult I have become with her. The struggle on these days is a fight against everything I am, and a pull toward everything I think I have left behind. Sometimes it is a battle that lasts the whole day or days, other times it is a struggle I can work through. In the past it would envelope me for weeks or even months. I don’t know the triggers. Sometimes it’s a season’s change, or it might be a phrase that strikes straight to the dark core of what it meant to be used, as I was, as a child.

Sometimes a situation will cause me to shut down. Other times when