In the book, Before the World Intruded, the reader is taken through a medical trauma author Michele Rosenthal survived when she was thirteen years old. She describes feeling like a zebra, an anomaly, an isolated mystery case that no one seemed to understand or be able to cure. She details the twenty-four years she then spent dealing with continued medical issues, all so mysterious there was no relief to be found, no matter how many specialists she met with. She is debilitated at many points in her life and lives in a state of necessary survival and self-preservation. In her book, Michele is open, honest, and incredibly courageous in this detailed depiction of her battle with undiagnosed Post Traumatic Stress Disorder.
My body ached when she described her excruciatingly painful weeks in the hospital as a young girl. My heart cried out for her as she spiraled into depression for years; and my pulse quickened when her anxiety and fear reached its highest points. The trauma overtook her life until she was able “to believe that a pure, untraumatized, authentic self exists despite our experiences; it is the part that wishes to be whole and free.” Her words vibrated throughout my soul as I devoured each page. While our stories are quite different, there were undeniable similarities.
As a parent of triplets born at 25 weeks 5 days and as a mother whose 14 month old daughter died very suddenly, I am no stranger to trauma and have spent the last six years learning to cope with my grief, depression, anxiety, and PTSD. As told to me by more than one health professional, the way my life is now is the way it will be, forever. PTSD does not go away, I simply must learn to live with it. Michele’s book, along with the science and research behind her work, has turned that notion on its head and opened a window of hope to the possibility of recovery and healing. On more than one occasion as I read, I exclaimed: “I want that! I want to be free like Michele!”
While our traumas are quite different, I have found universality among trauma survivors in reading Before the World Intruded. So much of what Michele describes in her reactions to the trauma she suffered parallel my own experience. There was a loss of her sense of self. Who was this alien person she became after her trauma? Likewise, I have come to define myself only as it relates to my experiences. I barely even recognize the woman I was before my girls were born. My traumatic experiences ground me in my current reality. Michele writes to that point: “In the context of that tragedy is the only time I know exactly what I am. The past is what feels most real. The rest is only a fantasy.” Later, she goes on to write that she was “frightened of what more will be lost if I heal. And what will be found: a woman I don’t recognize, will possibly never understand, a life engineered entirely on confusion.” I have felt this same fear as I have also defined myself as this woman who is constantly struggling to get through life and to find purpose behind my pain. Just as Michele writes, I am frightened of what may be left if I recover from PTSD. Will I be a complete stranger to myself and others? What if I don’t even like the person who is left over? I fear the unknown. This fear of the unknown has been a close friend of mine ever since my girls were born in 2006.
Many preemie parents are quite familiar with that sense of unease, knowing how quickly things can change and how powerless we can feel at any given moment. We cope with this uneasiness in a variety of ways and many of us reclaim control by becoming hyper-vigilant. After all, that is a requirement in caring for a baby with chronic medical conditions. We chart and schedule and track milestones in an effort to stay ahead of any developmental or medical surprises that may be lurking around the corner. We must be prepared for anything at any moment.
In addition to the unease, the loss of self, and hyper-vigilance in daily living, Michele describes her isolation as a means to survive. I understand the isolation well. We preemie parents often become isolated physically out of necessity. We may also experience a deep emotional and psychological isolation as we may become disconnected from our closest friends or family. This isolation can easily complicate and hinder the ability of parents to cope with their own emotional health issues and the reality of caring for a medically fragile child.
A few weeks ago I shared with my husband, that I just want to feel normal again. I am tired of the roller coaster of grief, anxiety, depression, and PTSD. It is time for this ride to end. While in the midst of my trauma and in the years after Zoe’s death I have very real moments of joy. All too often these joyful occurrences are far outweighed by the moments in which I feel powerless, weak, and hopeless. In these down moments my spirit is deadened and I feel is if I am locked in the prison of my own mind and my own existence. However, my quest for wholeness no longer seems an unattainable goal and has been clearly validated by Michele’s book. “The truth is, [I] was strong enough to survive. [And] there’s nothing powerless about that.”
What Michele has found in her own recovery and believes about everyone who has survived a trauma is that we are all “capable of mustering the strength to survive again…inside each of us is enormous healing potential.” Thank you, Michele, for taking your readers along your painful path and showing us that we can rise out of the ashes to walk in the sunlight. While your story is unique and not prematurity related, your experiences and your recovery will resonate with preemie parents like myself, suffering with PTSD. I hope the book will ignite the fire and inspire the determination we sometimes need to make a change, to find who we really are and to believe that “it is okay to be okay.”
*DISCLAIMER: I am a preemie parent, not a clinician, therapist, researcher, or student of Post Traumatic Stress Disorder. The review is based purely from my own experience and those of other preemie parents I have come to know. For more resources about PTSD and Michele Rosenthal’s work visit www.healmyptsd.com.