Chronic Disease

Day 183 and Pain

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

It’s not an original thought I have here that pain is challenging to articulate. Virginia Woolf wrote On Being Ill

but let a sufferer try to describe a pain in his head to his doctor and language at once runs dry

I have an intellectual grasp on what is happening in my body. I can tell you what is happening in great detail. I take an immunosuppressant twice a month to keep the swelling in my upper thoracic spine down. These drugs makes me a bit more prone to infections as we need my immune system to be suppressed to prevent spinal swelling.

But when an infection takes hold my immune system fights back, the swelling in my spine comes back and the pain resurfaces. The pain will sneak up on me despite me being armed with all the knowledge about this cycle. It is still a surprise even knowing it is coming.

Yesterday I went to a doctor and got antibiotics. I came home and got into bed. And I got stuck. I couldn’t figure out what was happening to me. I’d been reduced to a consciousness unable to communicate with the outside word. I couldn’t even communicate to myself what steps needed to be taken next.

Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language […] Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.

The Body in Pain: The Making and Unmaking of the World, Elaine Scarry

I go from having full intellectual capacity to understand my situation and discuss it with others to being stripped of language within hours. I couldn’t even tell myself what needed to happen next. I was stuck in bed. I tried to watch television but couldn’t focus. I tried to play mobile games and couldn’t focus. I was slipping into pain’s grip. It was only a reminder from someone who loves me that I had been lost from this plane of consciousness. “You are in pain Julie.”

I am resistant to taking pain medications. But it’s less about fear of their addictive power or potency. I am resistant to needing their help. When I’m not in pain I have the capacity to “tough it out.” I am able to hold onto the idea that my mind has some agency over my body. But as pain takes over my senses, I lose my agency and willpower. Pain steals the broader parameters of your personhood. I resist taking pain medications because I do not belief it is possible for me to leave my personhood so completely that I need their help.

But I do need their help. My focus narrows to the pinpoint of pain as it’s intensity blooms. And I don’t even notice it happening. I go from independent human to small body gripped in suffering without any awareness of how it happened.

Any other locus of power or human capacity that I normally retain shrinks to fit around the intensity of the pain. I am not even able to seek relief. That would suggest I retain the critical thinking to recognize what my physicians have prescribed I take and the capacity to enact it. I need to be reminded to take a Tramadol. I need to be coaxed into an OxyContin.

And then relief slowly slips over my mind and body. We think of opioids as drugs that shrink your eyes to pinpricks but I experience their relief more like a dilation of the soul. As the constrictive point of all encompassing focus that is pain is relieved my entire world opens back up.

I regain my mind, my willpower, my focus, and feeling in my limbs. That’s something they don’t tell you about pain. When you are in it you won’t feel anything else. The pleasure of a stretch or the relief of a leisurely walk don’t exist in the same reality as pain. You go from having thousands of senses to just one. You only sense pain.

If this all sounds unfamiliar to you I pray that it stays that way. But if it comes to pass that you are gripped by this monster know that it is ok to relieve your pain. There is no morality to this ghost that takes over your entire world. The only moral good that comes from it will be created by you. Pain will overcome you. You become stuck in it. And sometimes it is within your power to break free.