The Chronic Pain Battle

A few days ago, I was trying to add some holiday cheer to my new home with some sparkly snowflakes in the window. It’s my first year in my new home and my first year in many where the threat of my tumor and cerebral spinal fluid leak are not looming directly over me. I was looking forward to filling my home with joy and cheer, and I still am. While I was slowly and deliberately placing tape on the delicate threads that attach to my sparkling snowflake ornaments so that I could paste them to my window, I heard and then quickly felt the blinds come crashing down on my head. My front window is quite large, and so are the blinds. As my vision shook and momentarily went dark, and I realized I had taken a blow to the head, I stood frozen in my tracks.

Suddenly as the pain began to register and my hands began to tremble, I thought to check my incisions on the side of my head. I slowly urged my shaking hands up to my head, one hand clutching the point of impact, the other shakily checking for the integrity of my incisions. “OWWWWW,” I thought to myself, followed by an audible proclamation to myself that, “that’s not what you want.” As I slowly became aware of my surroundings I looked down to see my snowflake ornament broken in two, the tape hanging from the window sill, and the blinds, strewn across the floor. I did my best to move them against the wall and through searing pain I made my way to the freezer, found an ice pack, gently walked towards the cupboard and tore off a paper towel, dabbing at my head to check for blood. I decided to momentarily abandon my quest for cheer, as I had a deep and sudden desire to lay down in fetal position.

As I lay in bed, feeling the familiar sensation of throbbing in my head I began to cry. I suddenly felt so scared. I’m not often one who fears recurrence of my tumor or of my spinal fluid leak; recurrence is just another possibility in the gamut of possibilities of good or bad in my life. I spend more time in fear of those things that I haven’t spent the last four years practicing—the complexities of life that there are no treatments for. I’m not that afraid of recurrence because I’ve had a lot of practice being a patient. But in this moment of fear, as I clutched my head and stomach at once, and felt the cold of my ice pack slowly taking over my head, I had flash backs to hospital beds, helplessness, a desire to stand, to walk, to leave the confines of rigid pillows, tubes in my body and medicines slowly forcing their way down my throat. I felt a discomfort in me—a discomfort of being at odds with my own body, a discomfort and disquiet that was powerful and real. I felt suddenly helpless, suddenly deeply frustrated.

“Pull yourself together, it was just a bonk on the head,” I told myself. OK, fine, I could do this. I pulled my phone into my hands and with ginger movements Googled the symptoms of a concussion: headache, dizziness, blurred vision, ringing in the ears, nausea. This was superbly unhelpful because I already always have those symptoms. My dad called me just then and I answered with a shaky voice, half laughing and crying, I told him, “Daddy! I bonked my head!” Minutes later my boyfriend walked in and ran to my side with concern, I told him the same thing. I hid my fear under laughter and my pain under jokes and I hid my frustration at my pain from even myself.

I know that accidents happen to everyone, and that everyone has pain. I don’t question that fact nor do I purport to think that I am the only one in pain. My frustration stemmed from the realization that I always have those symptoms. The symptoms of a concussion and of a tumor that has since been removed, but left a legacy in the form of tinnitus, dizziness and pain. I always feel pain. Yes, the pain wanes and intensifies. It abates at times and grips me other times, but it is always there. And while I knew that, feeling a physical reminder of it and knowing that before all my surgeries that blow to the head would have been a distant memory the next morning and now, days later I struggle to manage the pain of a simple “bonk to the head” gave me a deep and unending frustration.

Alas, we move on, we power through, we keep stepping forward. I got dressed the next day and gently pulled my hair up, determined to enjoy Thanksgiving with my family. It’s now been several days, and while the throbbing in my skull has yet to abate, I have filled my days with joy, love and family (and ibuprofen!). I have taken every chance I could to tell my loved ones that they matter to me. I have smiled in the wake of pain and straightened myself up at every possible turn, leapt out of my seat, ready for life’s next adventure. Don't get me wrong, I don't think we all need to put on a brave face in the event of pain, and I don't think a good attitude will cure our ills, but I also don't think hiding from my pain has helped me triumph over it, so I face it head-on.

You see, that’s all we can do. I am in an often uphill battle with a physical pain that amplifies itself with fear and emotional and mental pain and sadness. With the passing days since hitting my head, my pain has intensified, and I have carefully and precariously managed it. I’ve done my very best. In my life and in my journey, I have tried to grieve the loss of a pain free existence in order to move on, only to realize that there is no such thing as a pain free existence, not for anyone. So I learn to face my battle with grace, to channel my rage and my disappointment into passion about what I can and will do in this world. I grieve as I go, balancing each moment of grief with a knowledge that life does not get easier, we get stronger — my mother taught me that. So as I build my strength and fill my reserves to get me through my next episode of pain, I find the joy, the laughter and love in the life I am lucky enough to lead. I am not called upon to be perfect, but in life I do believe I am called to be joyful. No disease, no pain and no amount of grief will strip me of that possibility.