Sometimes it’s as though someone has injected boiling acid into my abdomen. It’s a sensation almost impossible to describe, but recall the scene in Braveheart in which Mel Gibson is having his intestines ripped out of his body, and you’ll have an idea. I don’t want to be melodramatic, but it’s pretty bad. So I’ve been doing a lot of thinking about pain lately, for obvious reasons, and wanted to add my own thoughts to what Matt reported in his last post about my cancer pain.
The first thing I would like to say is that I am no martyr and have no problem taking the range of opioids and analgesics at my disposal. I have always had an enormous fear of pain, so much so that I seriously considered having an elective C-section with my first child. As it turned out, the labor and delivery happened so quickly that I didn’t even have time to have an epidural, a fact I’m still kind of bitter about. So I have experienced the pain of two natural childbirths, which was very bad indeed. This is worse.
But in fact the pain hasn’t been so terrible lately. Manageable, not the heart-stopping, eye-watering kind that I have just recently come to know. Although we usually associate cancer with pain, for the past 5 years it really hasn’t been so bad. But these days I never really know when it’s going to strike, and that makes me anxious. I take my first of three doses of methadone when I get up in the morning, and one or two fast-acting fentanyl will generally get me through most of the day. Except when it doesn’t, and the searing in my side leaves me groping desperately for the little blue case where I keep the pain meds. Two, three, sometimes four fentanyl at a go, and the pain subsides. No wonder fentanyl is at the heart of America’s opioid epidemic. When I take it, it alleviates the “breakthrough” pain in minutes, leaving me clear-headed, lucid and happy. Not high. Just more able to be me.
There are three fundamental truths about pain. It is at once completely universal, individual and invisible.
Everyone experiences pain, both physical and emotional, and some emotional wounds can hurt just as intensely and blindingly as the worst visible physical injuries. But while pain is completely universal, it can only be fully known at an individual level. No one can know exactly what another person’s pain feels like. In hospitals, the only way to gauge someone’s pain is to ask what it is like on a scale of 1 to 10. One person’s 4 could be another person’s 8. That doesn’t mean it hurts any more or less, just what someone believes they can withstand. I’m getting a crash course in what I can withstand. I think it’s a lot, but I’d really like to drop this course. I’m not looking for an A.
And while a physical injury may be clearly visible, the pain that it creates is not. With cancer or any other disease – or emotional pain for that matter – it may be completely invisible. Depending on the level of pain I am experiencing and what I may be doing, I could potentially hide it and pretend that nothing is wrong. Hiding the very worst of my pain from my kids has been hard. I hate to see the looks of worry from my adoring 10 year-old as he asks if it hurts or my 14 year-old asking what he can get me to make it go away. While I don’t want to cause my kids unnecessary worry, I also want to be as open and honest with them as I can.
Making visible the pain and allowing it to make others uncomfortable is a part of loving and being loved, but I wish there were an instruction manual for doing it the right way. If I could shelter everyone I love – my children in particular – from being witness to my pain, would I? I don’t know, but I hope not. My wish is to be brave enough to see the hurt, worry, and concern in their eyes as a manifestation of their love for me and to be able to stop myself from shielding them from experiencing the full panoply of feelings that come with love. Love cannot exist without fear and pain as well as joy and comfort. If you’re lucky, you get much more of the latter than the former, and I still get to count myself as inordinately blessed.