It hurt. I woke up, throbbing, beating, pounding.
“Is it my heart?” I wondered to myself as fatigue took over my limbs. “It’s in my head, I can feel my heartbeat in my head. Wait, no, can I?”
I suddenly remembered where I was, who I am.
“Ah fudge,” I thought to myself, “it’s all the goddamned brain surgeries!”
I tried to breathe through the pain, trying various techniques and exercises. This will pass. It must pass. This is just a moment, fleeting in its power, tricking us with its glory and its force. This will pass.
The pain deepened, stealing my breath, catching my tears. Reluctantly I rolled to one side reaching in the dark for whatever pills may fall into my hands. I took the lightest dose of Tylenol. My hands trembled as I clutched my water bottle.
This will pass.
“Visualize it. The breath going in bring relief, washing it over your third eye center, down towards the sacrum; exhale let the pain out.” Healing in, pain out. It was my mantra. This will pass. I can be stronger than this.
That was Friday night. I spent Saturday and Sunday in a Valium and Advil induced haze, lucky to have my best friend bring me cookies and sandwiches, clean my home, and then to have my parents force me out of the house. Through all of it I was wobbly, I was tired, I was scared. Flo was proving to me that she is a force to be reckoned with and with each drop of CSF I had to fight harder to maintain my spirit, to remember that every breath in is healing coming in, and pain going out. I struggled to reckon a bad day with the grand scheme of things. I struggled to remember that tomorrow will be better.
“I take one step forward and ten steps back.” I said, hoping someone would tell me I was wrong. The only person who can tell me otherwise is me. There are no steps back, even the pain moves us forward, though it may blind us as it does.
This will pass.
I spent the weekend doing the best I could, working where possible, napping where possible, wiping the CSF off my face when necessary. I willed my body to heal, but forgave it for not always being ready.
Tig Notaro makes a great joke about what we can withstand. She makes use of that trite saying, “God never gives you more than you can handle” and flips it on its head. She, having been dealt a pretty tough hand herself (a cancer survivor and general bad ass), imagines God, looking down, telling the angels to trust him, she can take more. The angels ask God, “but, why?!” And yet, despite it all, she withstood. (If you haven’t heard her comedy, it’s so good!)
As my heart beat through my head and my body shuddered in pain, I tried to quiet my mind. I tried to remember all that I had withstood. With every breath I imagined myself standing up out of that hospital bed each time, the pain it caused, the resolve it took. I imagined those brutal MRIs that came post-op and made no regard for my open wounds and my tinnitus. I remembered walking with a pressure bandage. I remembered what I heard with the quick swish of a curtain close and a needle penetrating my back, I remembered IVs, and cuts, and scars, and battle. I remembered that I can withstand battle. My body can fight. There have been times my spirit fails but it always renews (in part because of a tenacious will to live, but more importantly because of the people around me whom I love very much).
I have come a long way since Friday night, working, running errands, and even going to Pure Barre today. With every step forward, as I felt the beating in my ear, smelled the icy hot on my back, and breathed through the pain, I visualized all I had withstood. With every movement I saw my body persevering all those times.
“If you could do all that crazy shit,” I tell myself, “then you can do this.” And then, I do my best, being gracious to myself when I fail or fall, and being proud when I withstand so much, all the while knowing, today may hurt, tomorrow may hurt too.
This will pass. I will withstand so much.
Maybe we are not given more than we can handle, but maybe we are. Maybe we take on more than we can handle. Nothing is ever simply given, that’s not how the universe works. However it does work, one thing I have learned is that survival, health, healing, it’s not about what you can handle, it is about what you are forced to withstand, and the grace with which you do it.
Peace and Love,
You are such the badass!
So are you! Proud of your progress on rare disease advocacy!
Since you know me…..hehe…..did you get a chance to see the pics? 😃