There’s a certain rhythm to chronic pain. It vacillates in a certain way. A moment of relief. A rush of intensity. The booming of the throbbing. Dum. Dum. Dum. Dum. It fits with the ringing in my ears that comes in and out, gets louder and quieter depending on my surroundings. Swish, ring, swish, ring, swish, ring. Dum, swish, ring. Dum, swish, ring. Then you add your breath, trying to create a rhythm that resolves itself. Dum, swish, ring, exhale. Dum, swish, ring, exhale. Then, depending on the day, the moment, the surroundings, you add a tensing of the jaw, a shake of the leg, a grip on a loving hand, and the song becomes a dance. A dance that has a sensibility all its own. A disjointed, uncoordinated but wholly unique dance.

I’ve been doing this dance long enough to have a routine, but sometimes I can’t resolve this rhythm, I lose hope in the routine of pain as outlying circumstances aggravate the situation. I forget the steps and the dance collapses and the unique parts of the rhythm become an uncontrollable chaos. A chaos that leaves me listless and weak.

The last few weeks have been like that, and having finally found myself again, I can reflect back on the way I made it through. Here’s what happened:

A few Wednesdays ago I had to get a spinal tap. I was told it was routine. It was a diagnostic tool. Something intended to help us figure out why something as simple as a sneeze crippled me in such a devastating way. My pressure was high in my head. Not high enough to show my brain being crushed in a scan but high enough to make me uncomfortable and be worrisome over time. Ok, well, all this crap is worrisome over time. So, I try not to worry. Then I stifle the worry and later I panic and cry on Jason’s shoulder the morning of a spinal tap, and he holds my hand and tells me I don’t have to do anything I don’t want to and walks me through the process. The spinal tap went fine aside from a moment of vasovagal shock, aka me warning the doctor that I am super sweaty and about to puke on this pillow. I had just gotten over the shame of yet another doctor seeing my butt crack when he came in to give me the results. My pressure was high, not dangerously high, but high enough. Maybe the spinal tap would bring me to equilibrium and I’d be fine. Fine. I’d be fine. I don’t even have a framework to understand those words. Fine.

The spinal tap took me just past equilibrium to low pressure. With the most excrutiating pain I’ve experienced since my craniotomy, I found myself unable to stand, to move at all. I couldn’t roll over in bed. I couldn’t sit down. I couldn’t sit up. I was trapped in a horizontal position with nothing quieting the pain. I felt my muscles disintegrating beneath me, each time I struggled to get up I felt my joints crack and ache under the weight of my immovable body. I felt heavy, listless and an anger I couldn’t process took me over. I would look at Jason and hope he had some words that would heal me. I struggled with the idea that doctors kept promising me healing but it seemed each procedure made me worse. I was on bed rest for 5 days. 5 days. It’s not a lifetime, it’s not even a week, but it was 5 days that took me from optimistically hopeful to painfully angry. So what did I find in this 5 days? What did I learn? What was productive about this? I learned my family would do anything to keep my spirits up and make me whole again. They fought for me in various ways. They advocated for me. They proved the reason for my gratitude. The showed me what I live for. But I learned more than that. One day, as I threw world’s largest pity party, I looked at Jason and wondered aloud why we ever went down this path. This path of surgeries and diagnosis, when I was fine. I mean, sure, I was dizzy, but I was fine. I told him, Herbert would slowly have crushed my brainstem and one day I’d have just faded away and no one would have been the wiser. He looked at me like I was nuts and though I was mostly kidding he looked at me the way he does and said, “I’d have been the wiser.” He would have been the wiser. It was in that moment I thought, ok, enough, time to snap out of it. I can’t control the pain, but I can control my reaction to it. I can still fight for my life. I can still have my life, my love, our story is just beginning. I remember looking at Jason and all I could think in my mind was, “it was always you, and it always will be you.” He was my hero that day, and really, every day.

Today at physical therapy, my bi-weekly adventure into scar tissue massages, vestibular therapy, neck therapy and now relaxation techniques and pressure point massages, I found myself moved in an interesting way. Having infinite wisdom, the physical therapist told me that I am indeed stressed out. Yep. So? So she thought she could help and so today, she did all the regular therapy things but then dimmed the lights, played a soft song, and went on to do a pressure point, touch and sound something or other, meant to bring me to a point of relaxation. Turns out, I’m not a very good relaxer. But there was a moment, a moment of immense hope. She tapped on my arms, swept her hands over my legs, tippity, tappety, tip, tap, tap tap. She placed both hands on my head at one point and for a moment I felt relief. Then as she proceeded she held my hands and I suddenly felt a rush of emotion and tears stream down the sides of my face through tightly closed eyes. I realized something. It was fear. It is fear that keeps me from finding a way out of my pain. Fear that prevents me from working through it. No it isn’t all an emotional journey, I have true physical ailments, but I hide behind them. I allow them to have power that they didn’t earn. I fear relinquishing control and allowing pain to go and relief to come because I don’t know what would happen to my status quo. But today? I felt the way I did when Jason held my head in his hands and said he’d know the wiser, the way I do each time I hug him,  and the way I did when I first saw my family after surgery, and how I feel each time they show up for me and I for them, and the way I do each time my beautiful niece and nephew run to me and give me a hug, I felt full. Full of love and willing to let go and take a leap of faith. A leap into healing, a leap into letting go of fear, a leap into everything my life can be. I’ll relinquish control and instead take charge, and let the fullness of life make me whole again.

So my rhythm is way off. It’s all tip tap, toppety, bippety, boppety, tap, swoosh swoosh. But maybe, just maybe I can work with that.

Peace and love –

Samira