After the call, I crawled into one of my three-year-olds’ beds, clutching her bedraggled pink bunny and I cried. I cried and I cried. She silently padded into her room and climbed onto the bed next to me. She stroked my face so softly and whispered “Mama sad?”.
I wept into her soft, lavender-dotted pillow, wondering how much more I could take. I wept out of sadness and guilt for what I knew this was doing to our family. I wept for the things my illness had robbed from me. For the mother I used to be. For the wife I used to be. I wept for the life I wasn’t living, for the suffering I was having to endure. Days, weeks, months were passing us by and we weren’t making memories. When was the last time I went out and had fun? I couldn’t remember. When was the last time I was intimate with my husband? Guilt descended over me like a black cloud as I thought about life from his perspective. He had lost the woman he married – a vivacious, energetic, upbeat, strong, fit woman. If this wasn’t the definition of in sickness and in health then I didn’t know what was.
Someone was once asked to describe me in one word, and they said determined. I guess they were right. I mean, I am undaunted and purposeful in my convictions. But the word that came to mind as I moved through this experience was tenacity. I thought that being tenacious was a compliment, something to be proud of, but really there is an undercurrent of stubbornness and fear encompassed in this word.
The back and forth from head to heart, the anxious need to be in control, was crushing me. I was completely consumed with trying to figure out how I could control every step of this story. To minimize the pain for myself. To shorten the life cycle of this lesson.
For the girl who had always said, Patience is not one of my virtues, life truly was giving me the greatest opportunity to learn patience. Patience and peace are inextricably linked and impatience denotes resistance. My entire being was resisting what was happening and trying to direct every tiny little part of this experience. I was trying to play God.
I was not at peace.
Cushing’s literally affects the chemical balance in your brain, and with no diagnosis in sight, I was left constantly pondering my own sanity. I was crushed with the constant blows of self-doubt which compounded the acute exhaustion I was constantly feeling.
The unnatural surges of cortisol would cause extreme anxiety to the point of panic attacks. I thought if I could just keep chasing after the outcome, this mirage that I had created for myself, then I could control how and when it happened and thus spare myself some pain in this horrendous experience. But of course, a mirage is just an illusion, and because of how hard I was pushing, I was creating far more pain for myself.
When you are truly suffering, it is the absolute definition of losing control. And, as much as you try to have the power, ultimately it is through surrender that we release ourselves from that suffering.
So you lie down and you breathe. You breathe and you think about breathing. You try not to give power to your thoughts, ‘Oh my god, I feel so sick, my head is spinning, I want to throw up and pass out. I want to get out of this hell hole. I don’t want to do this anymore. I want to get off the ride. I don’t want to do this anymore.’ You just lie there in your three-year-old’s bed clutching her bedraggled pink bunny, trying to think of breathing, or anything, to take away from what you’re feeling.