After becoming a mother in my late twenties, I zealously guarded my sleep privileges. When my children were older, I heard several variations of this thought: why waste time sleeping when there was so much living to get to? I was deeply offended. Sleeping late, long, luxuriously, was my reward for hard work and stress and parenting.
Several years before my cancer diagnosis (although the cancer was already hard at work in its own indolent way), I began having terrifying episodes of insomnia. They seemed to be connected to the heart trouble I developed in 2006. I would wake up in the wee hours with immobilizing chest pains. I slept alone; Doug and I were separated for years before he actually moved out of the house. So the pain would wake me and I would begin a vigil of fear and shame.
These days, I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should.
The fear was that I was actually dying of a heart attack. I have a very mild case of congestive heart failure and a very active imagination. The pain was transfixing – literally pinning me into the bed while I struggled to breathe and slow my heart rate. The shame remains more difficult to speak about. But isn’t that the bondage of shame, anyway? The inability to speak it aloud?
I was ashamed that I would be found out as a fraud. That I was not really sick, that I had somehow manufactured the experience of pain. I was deeply ashamed that somehow, my mind had tricked my body into feeling symptoms. I felt shame that I might be, however inadvertently, taking more than my fair share of attention, of medical care, of health insurance benefits. I felt such deep shame I even made up a little rule for myself: no more than one ER visit per year for chest pain.
Seeing my marvelous cardiologist every 9-12 months, as she recommended, we spent a lot of time talking about those chest pains and my fears. She ordered tests, changed up my meds. But the chest pains kept recurring, and I kept spending those wee hours of the morning, two or three times a month, in a fug of shame and pain. Insomnia plus a crippling fear of impending death plus shame is a potent and no doubt toxic mix.
Along with the initial cancer diagnosis in August 2017, I was told I have ulcers. In the flurry of consternation about pancreatic cancer, somebody prescribed me the generic equivalent of the little purple pill, and I’m happy to report I have had not a single episode of that particular insomnia since. I also learned that if you think you’re having a heart attack, you can get up and move around. If the pain lessens or changes, it’s probably not your heart.
Since the diagnosis of metastatic neuroendocrine cancer was confirmed in January, I have been experiencing several new kinds of insomnia. Unfortunately, most of them are related to pain. There’s the snakes in my belly that were the early harbinger of the cancer. There’s a pain in my upper back that I really think is my poor old liver quivering from repeated insult.
There’s an ache in my heart that sometimes flips into rage when my powerlessness crosses the threshold of my awareness. The post-surgical hernia, despite my best efforts, has grown as big as my left tit and is quite a bit more firm. It hurts if I do too much. These past few weeks I’ve had a constant headache and feel like throwing up most of the time, and all of these aches and pains are amplified after midnight.
So I can’t always sleep. I meditate and pray. I putter, trying to shave a few seconds off my Freecell time, noodling around on the internet, flitting through Facebook. I read, a lot. I ruminate more than I should. But the idea that sleep is something I’m entitled to doesn’t hold water anymore. I’ve had an important revelation:
I really was sick, all those nights I thought I was dying. In spite of my first-class health insurance, in spite of my faithful adherence to Western medicine, its skewed values and narrow perspectives, in spite of a fine education and my white skin and my privilege and my clenched-teeth determination to wrest what I want out of life, that system missed a simple case of ulcers, then misdiagnosed cancer as an emotional problem. Complicated my recovery with poor post-surgical care and then, again, misdirected my pain and channelled my shame to work against me.
My pain is real and my shame is unnecessary. In fact, millions of women just like me, throughout history, suppress their pain, or report their pain and are ignored, minimized, shamed for listening to their bodies and reaching out for help and health. So it’s okay to stay awake during these wee hours. Maybe even necessary. Because there is somebody else out there, struggling with pain and shame and fear. I’ll sleep when I’m dead. Tonight, I’m with you.