I grew up thinking an “illness” was either a fever or croup. Illness was a stuffy nose — a sick day, an excuse to miss a day of school. At 18 years old, “illness” took on an entirely different meaning. Illness meant waking up from a coma, learning that my stomach exploded, I had no digestive system, and I was to be stabilized with IV nutrition until surgeons could figure out how to put me back together again. Illness meant a life forever out of my control and a body I didn’t recognize.

What happened to me physically had no formal diagnosis. I had ostomy bags and gastrointestinal issues, but I didn’t have Crohn’s disease. Doctors were fighting to keep me alive, but I had no terminal illness. There was so much damage done to my esophagus that it had to be surgically diverted, but I was never bulimic. I didn’t fit into any category. Suddenly, I was just “ill.”

I became a surgical guinea pig, subject to medical procedures, tests, and interventions, as devoted medical staff put hours into reconstructing and re-reconstructing me, determined to give me a digestive system and a functional life.

I eagerly awaited the day I’d be functional once again — the day I was finally “fixed” and back to normal. Once I was all physically put together, I’d be eating, drinking, walking, and feeling just like myself again.

Right?

Not completely.

I desperately dreamed about the day I’d be discharged from the hospital. I’d be happy, healthy and would finally know who I was again. I’d feel real. I’d feel human. From there, I could do anything.

Reality sets in

However, after 27 surgeries and six years unable to eat or drink, I learned that the body doesn’t heal overnight. You don’t wake up in the recovery room to a “normal” life.  Stitches had to heal one by one. Neuropathic nerves grew back one millimeter a month. Learning to talk again took weeks. Learning to walk again took months. Not only was there no “quick fix” to healing, there was no “permanent fix” either. Wounds reopened, and I became accustomed to new “openings” in my body leaking at any given moment. I learned that the body is delicate, precious, but incredibly strong.

But the biggest shock to me was waking up in a new body and a new mind, troubled by post traumatic stress disorder

Waking up to disorder

Not only had I woken up in a new body, but I also now had a mind troubled with anxious thoughts, associations, and memories. I now realized why I was experiencing so many strange sensations — sensations that made me feel alienated from the rest of the world.

Identifying symptoms

Intrusive Memories

Gaining back my physical health, I was unprepared for flashbacks, images and memories that I thought I had repressed. Any form of outside stimulation overwhelmed me with every emotion that I had not wanted to feel for all of these years. Now that I could “feel”, I was feeling everything — including the pain I had tried to swallow for years of medical uncertainty, surgical interventions, and countless disappointments.

My heart started beating rapidly, and I started to panic as my memories intruded on what appeared to be a perfectly calm moment. It wasn’t as if I was recalling a painful time. It was as though the doctors were right there with me, peering over my open wound, dictating my uncertain future, and confining me to a world of medical isolation.

Avoidance

Whenever I started to feel these scary memories at any given time, I felt like I had to avoid any stimulant that might make me feel anything at all. Nothing felt “safe.” I lived my life like I was constantly running or fleeing. I spent years locked in my room, journaling for hours with my blinds shut, careful to shut out any outside stimulation that might make me feel. When I was unable to eat, this was a survival mechanism; if I felt, I might actually feel the deadliest sensation of all: hunger.

Dissociation

Once I started avoiding my intrusive memories, I got used to the feeling of numbness — so much that I became dissociated. When trauma left me emotionally and physically wounded, I froze to protect myself. I went numb, so I didn’t have to feel pain. I went numb, so I didn’t have to re-experience what had happened to me and mourn my losses.  The world didn’t feel real anymore as I learned to stay “out of my body.”  Through dissociating, I could avoid really feeling what I need to feel: grief.

Hypervigilance

Staying out of my body and dissociating was how I coped with anxiety. Feeling tormented by my memories, which felt like they were not memories at all, but real and present dangers. I was extremely anxious and irritable. If I couldn’t constantly fidget or find another way to “numb out” I would start to panic, and would be overwhelmed with even more intrusive memories and raw, forgotten emotions. My anger would end up being misdirected at others, when really, I just wanted to shout at my circumstances. My anxiety manifested in all the wrong places; I couldn’t sit still in classes and couldn’t function as a calm, responsible adult.

Soon, these symptoms were controlling my life.

Owning my trauma

My life changed when my stomach exploded, ten full years ago. PTSD is something I still struggle with because my traumas happened to me, have affected me, and will always be a part of me.

But, I’ve learned how to thrive in spite of what has happened to me, and for the first time, my life feels bigger than my past. I’ve found healthier ways to deal with memories, flashbacks and emotions.

Learning to cope

To live a healthy thriving life, I’ve had to befriend my past, embrace my experience, and express what had happened to me. Once I was able to speak to it. I was able to gently teach myself how to live in the present moment rather than in the world of the trauma.

Every day I tried to face a memory a bit more. I called it “dipping my toes” in my trauma. Once creative expression helped me face my own story, I was able to share it. And the day I first shared my story with someone else, I realized I wasn’t alone.

PTSD: The mosaic I see

I’ve learned that illness isn’t always in the physical scars. I’ve learned that some wounds aren’t visible, and some wounds even we don’t know we have, until we choose to take care of them. But I’ve also learned that I’m resilient, strong, broken and put together again, differently, yet even more beautiful than before — like a mosaic.

PTSD has not broken me. It’s taken me apart, and I’m reassembling myself day by day. In the meantime, I’m learning to love what I can build.

Amy Oestreicher is the author of an upcoming book, My Beautiful Detour, and can be reached at her self-titled site, Amy Oestreicher.

Image credits: Shutterstock.com, Amy Oestreicher