October 2008. I was having complications from Lupron, a chemotherapy medication used for endometriosis. A surgical mistake in 2003 resulted in secondary trauma that triggered Complex Post Traumatic Stress Disorder. Five years later, my life was unravelling. I was full-blown depressive episode, laying in bed and slowly starving myself.
Sometimes I am amazed at how still my body can be. There is a place I can go to, deep inside myself, where I just don’t feel what my body is doing. It’s quiet and still, dark and warm. Sometimes it’s a peaceful place to be… sometimes it’s frightening… a confrontation with my demons.
I let myself go to this place so much that my body simply wasted away. I built the softest walls around me… those that give others support and comfort. I mothered and cared for others while I starved myself of the things I needed most. Something in me was broken.
It wasn’t just the pain in my body telling me that I was beyond repair… it was the voices in my head telling me I was beyond hope and not worth fixing. I was convinced that my demons were within me as justice for my weakness of character and mind. I was certain that there was nothing in front of me, except the blackness that had taken everything that was ever good in my father. I suppose I had finally lived up to his prediction of me. I was stupid and worthless.
My mistakes of the last several years haunted me in those black times when my body was shut down for healing. I banished myself to a crappy little apartment and a room the size of the smallest walk-in closet I had during my prosperous years. The army cot and Ikea mattress I slept on reinforced the pain in my wretched little body and rang out a karmic lesson I was sure I deserved.
My only sunlight were the days that I felt well enough in mind and body to drag myself to the office. There were times that reminded me of home and teams that came together for a shared task and finished as friends. I found that again. Here, in a country I had learned to detest among people I thought as cold as the Dutch winters. These friends helped me rediscover a love for people. It restored a faith I questioned as a ridiculous fairy tale, even though I kept my friends at a distance.
I had no trouble with openness. I discovered that losing my battle with self meant that I had lost a connection with my ego. There was just no point in avoiding truths, especially fundamental ones. Somewhere the gentle support of friendship helped me face those demons in my darkest days, my weakness of spirit had convinced me that mortality would soon show itself, my openness allowed me to face answers to questions that I had forgotten I asked.
I slowly found myself in this dark place, and I was small.
There was a point when the self I found wanted to smile again, and she did. I found a few bright weeks of health and chased it. I did things I thought I wouldn’t do again and went places I had never been. My son and I filled up the tank and opened the map. It was the coolest time.
Answers came in the form of wonder that I thought I had lost, wonder of seeing beautiful places built long before I came to take their picture.
When the ‘episodes’ started I wasn’t ready. They hit me hard. I had burned what little energy I had left in my body in those brief weeks of living well. I tried to keep up with obligations I had made when I could keep a heavy schedule. I was down to 41,5kgs ( 91 lbs ) within three weeks.
I rediscovered the feeling of being afraid. I was afraid of not having life. I was afraid of not having the tomorrow I could make for myself. In this I had found a horizon, somehow there really was a tomorrow. It was a lifeline of sorts. It made me reach out for help when my body started shutting down on me. It made me place the need of my body above the torment of my mind. It made me face life and choose for it.
It was the strangest battle. I thought that I could just get in there with the doctors again and get my body back. I could foresee a familiar path with doctors, scans, surgeries and recoveries. I could see a time when I would be back in action, my old self. I had a long look at where I was and I was in shocking condition. Whatever was ahead of me on this familiar road was not going to happen easily to a body in this poor state. I needed to get a handle on things.
First, we [the doctors and I] needed to figure out what we were up against. I was used to medicine in the US and Australia. The system in the Netherlands was completely incomprehensible and not just because of language.
There were critical things missing that left me feeling sometimes abandoned, sometimes ridiculously unworthy and unimportant, and sometimes completely adrift in a lack of information. I needed to know what was going on in side me. There was just no urgency and there was little clarity in conversations with my doctors. I missed the comfort of the care I had in Australia, with the team of doctors who worked together and helped me understand how to care for myself.
I had none of that here.
I tried to fill in the blanks for myself and failed miserably. I could find only the worst problems to associate with my condition in my research. I scared the life out of myself. The truth revealed itself in deep-set, complex problems in my abdomen and pelvis that would need to be managed for the rest of my life. I’m 40. Going on averages, the rest of my life should be a very long time.
When I received the results of every test, the answer from my doctors was always, ‘This is permanent. You have pain medication, what more do you want?” I took this like a knife through the chest every time I heard this result. The anti-depressants help me understand the nuances of the translation here. I am actually being asked what I want.
What a question. With all the factors of my life, this is quite a question.
I have discovered some answers.
I want to live without pain and fear.
I want to enjoy the rewards of my experience at what should be the height of my career.
I want to dance and walk and travel and experience the things I planned for myself.
I want to see the smiles of my family and friends in sunlight, not at my sickbed.
I want peace in my mind and the energy of feeling connected to life.
I want to be able to keep my independence and my peacefulness of spirit.
I want to fulfill my life’s work.
My children and friends are helping me along this path. I am working toward a balance that my body and intent can accept. I am shifting my understanding of how the answers to this question can be fulfilled; limitations in my body don’t mean a limitation in the outcomes. There are still many, many possibilities for me.
The road is tough, mostly because not many people I know have traveled it, so there is learning needed just to understand how to get there. It’s trial and error sometimes. Often I learn my limitations only after I have crossed them.
Those around me have learned as well. We are all growing from this experience. Whatever is ahead, I know I won’t be alone. I know I’m strong enough to get through it. When it’s all too hard, I go to my quiet place. My body is still while it heals, but the darkness is comforting. The demons are quieter now…. pondering the answers.