Breath by Breath, Minute by Minute

I don't understand how pain can take over the body to the point of paralyzing it, keeping it from getting out of bed or even lifting itself off the floor, wherever it happens to land.

Last evening, I set my routine alarms — about five throughout the night — to keep me on track with my pain medications. I've become rather indifferent to waking up to them. If anything, I enjoy it. Each alarm brings something with it, whether it's a midnight snuggle with Valentina or a 3 AM call to my friend in Spain to beat the time difference. While I may not mind these medication "breaks," my body certainly does.

This morning, I awoke with the worst pain radiating from my lower back, right around the L4 vertebra, and traveling up toward my mid-back. I looked down at my left hand and paused in disbelief. Resting in my palm was a small glass bowl from Malta, where I had carefully set aside my 2 AM doses of pain medication. I reached down onto my lap with my right hand, only to find my phone open to the alarms application, with three alarms in the process of snoozing, probably for the seventh time.

I've found myself in this predicament before: I fall asleep before I can set my alarms, I set alarms that never sound, or I wake up to a collection of snoozed alarms. My phone's alarm history deserves its own medical chart at this point. 

The pain is an unpredictable force that transforms my soft, clammy flesh into the wrapping paper around cancer's unwanted gifts to me. And, unfortunately, these are gifts that keep on giving.

The pulsating, devilish rage that circulates through my otherwise innocent limbs used to take away my speech altogether. I would sit there silently, breathing shallowly, unable to think beyond the torture eating away at my insides. 

But today, I break the silence. Today, I grunt as I breathe deeply in and out.

Why is it that society doesn't consider pain a legitimate emergency? After innumerable stays in the emergency department, where I've been told that pain is a secondary issue and that pain management comes after imaging, my body seems to have learned that it must groan and screech to make itself heard. Is that what it takes for medical professionals to treat my pain? Does it have to become visible, audible, palpable?

I would do anything to contain the fire raging within me, but the flames have a mind of their own. They spread to my right hip and travel down my right leg.

My sister lies beside me. Valentina, too. The pain continues to rage, and I cannot stop my groans, no matter how much I wish I could mask my distress. I sense my sister's concern in the gentle touch of her hand. I try to speak, but the pain makes my breathing heavy, and the words get stuck in my throat.

"There's nothing I can do," she says.

"Just be," I say.

Presence is what matters.

The pain makes me retreat into myself. It makes me consider death, not because I genuinely want to die (quite the opposite, actually), but because the thought of living with pain this intense feels unfeasible in the moment. 

My sister and puppy lie beside me, one on her phone and the other chewing a bone (I wonder who is who), and their presence brings me back out of myself. They remind me that even during those frequent moments when bloodcurdling pain confines me to my bed, I still have a life waiting for me beyond the confines of my bedroom. In friends who live far away but feel close, in Friday evening game nights, in weekend trips still to come.

I went to bed yesterday with plans to go for a (st)roll in my wheelchair around Colt State Park with Mia and Colin, followed by a visit to a bookstore I've been wanting to explore. I woke up and did none of those things. But I got through a pain crisis, and somewhere in the middle of it, I found the strength to write something.

And, hey, movie night may still be in tonight's lineup. Sometimes a change of scenery means moving from the bed to the couch. Baby steps.

If pain has taught me anything, it is that getting up doesn't always mean physically getting up. Sometimes it means making it through the next hour, accepting that today's plans have been rearranged (or completely thrown out the window), and finding something worth looking forward to anyway.

I don't think every day has to be turned around into a good one. Some days are just hard. Really fucking hard. But even on those days, life continues to happen around me, and sometimes right beside me. 

And maybe tonight, that's enough: familiar faces, a comfortable couch, and a reminder that there's still so much life in the little things.