After a long trip away from home, I’d hoped to return with a renewed sense of purpose after school year and winter burnout. Hope can be a demoralizing emotion at times. The “eye thing“, as I’ve come to call it, got worse while on the road, leaving me crying in a hotel room with my husband rubbing my back as I got through another painful episode of stabbing, burning pain. I’ve been through labor and delivery of a child. This pain feels much worse, especially with no end in sight (she smiles wanly at the pun).

Recurrent Corneal Erosion Syndrome (RCES) causes my eyelids  to adhere to my corneas, ripping away the top layer of eyeball cells, exposing nerves and causing severe light sensitivity. I am now afraid to sleep. Being exhausted and miserable is impairing my judgment, my sense of normalcy, any ambitious thoughts of turning this ship around. The pain alone is exhausting. Combined with a lack of sleep, I am a miasma of crazy just waiting to happen.

I try to intellectualize how to balance. How to not be afraid. How to let go of expectations. There are so many people who have encountered this beast. I have been fortunate, until the last year, to not know chronic pain. Some people crumple and shrink and become smaller. Some people are defiant and buoyant and astound the rest of us.

Whenever I have read accounts of suffering – whether it be about the suffering in brutal war or of chronic illness, I am amazed at the fortitude of humans. I am grateful to be where I’m at and wonder, in the back of my mind, what kind of person I’d be in those circumstances. There are doubts.

Lately, I’ve felt small and oppressed by my body’s treachery. I can’t see joy for the anxiety of what the next moments hold – more pain or momentary rest? If I imagined this pain to be a lifelong battle of management and containment, would I want to be this lifelong person, shuttered and defeated in the face of pain? The answer is a resounding “No!”

I’ve researched all the treatment options, read up on homeopathic and nutritional approaches, visited the many, many forums of people living with RCES. Knowledge fortifies me, gives me some sense of control and puts me on a path of my own treatment. The doctors become my consultants, not the authority figures dictating the next step. I have assumed responsibility for my own care and likewise, must assume responsibility for the person I will be in the face of pain.

I have always believed character truly reveals itself under pressure, but I don’t know if it’s true. We are human. Sometimes we snap irritably when we mean to say “it hurts”. Sometimes we run when we should stand our ground. Sometimes we turn a blind eye when we should blow a whistle. We all want to believe that under fire, we’d behave honorably and bravely, but can we fault others when their instinct deems otherwise? Because we just don’t know.

I am where I have not been before and it is an opportunity to learn – to learn about myself, to learn new skills, to see if I have the mettle to stand my ground and not give into hopelessness. For me, seeing this as a challenge to undertake makes it better somehow.

At 2am, it happened again. Searing pain followed by burning and tears. I leaned into it. I lay there forcing a measured breath, in and out, in and out. I imagined sending those breaths to my pain, allowing them to wash over me, over the wound, over my fear that it would continue. I sank into it and thought “I can do this moment”. Slowly, in the hour of moments that passed, the pain subsided.

I can do these moments. In this moment, I feel joy at the emerging sunny day, the cats snoozing happily in the window, the pleasure of expressing myself in words. The big picture – the optimism of cure or pessimism of long term pain is useless. Maybe the next moment, the next word, the next thought is all I can reasonably handle. I hope that I handle it well.