Another sleepless night, that’s what is on the agenda. Flames consume my right arm pulling me deep into hell. I want to scream but my brain losses the ability to form words. Lost to the darkness that consumes me turning off all conscious thought, questioning every move, wondering if this is the day that I will let the it win. My body screams in pain; “Just lay in bed, don’t move, don’t think, don’t even take a breath,” it says. A conscious voice yells though the void, “just roll out of bed, shower you’ll feel better.” One foot in front of the other, one foot in front of the other….Just get to the counter. Six bottles line the kitchen countertop, orange and white staring back at me, filling me with hope, maybe today will be the day I can live a normal life…maybe today. Sadly, this day will never come. I live with Complex Regional Pain Syndrome (CRPS), a rare nerve condition that cannot be explained, but typically happens after a trauma. Fewer, then 200,000 cases exist in the United States. On the McGill pain index, which is a scale that rates conditions and situations painful via points, CRPS tops this scale at 45-49 out of 50 depending on the source. This rates my condition above an amputation of a figure or toe and childbirth without training. This is what I live with every day.
Another doctor’s appointment with no answers. Surgery is the last option and it is what is staring me in the face. August 1st is the date, that I laid exposed. Face down in the ice cold, sterile room, surrounded by medical staff. I am getting strapped on to the table, closing my eyes and trying not to think about the ocean, my brain is trying to forget what is about to happen. Picturing the waves crashing against the rocks, washing away the sand, trying to remember what the cool pacific water feels like, but I can’t. The nurse anesthetist, is smiling at me as I am starting to panic. My throat is getting tight and chest is screaming. A familiar face walks into the operating room. He asks me if I am ready. Nervously I smile back at him, I try to sound convincing, “As ready as I ever will, I am trusting you.” I can’t see him anymore. The nurse asks me to take a few deep breaths and before I can exhale, voices turn into mumbles and my vision turns blurry as the waves of medication wash over.
Waking up, in a small room, pain screaming from the fresh incisions on my spine and hip. I reach back and feel the tape. A large oval lump, protrudes from my hip, where the battery and computer that run the electrode in my spinal cord. It feels strange as I try to sit up, I can feel the wires flexing and twisting with every move. The nurse comes in and offers me some oral pain medication for the hour drive home. I am too drowsy to speak, shaking my head yes in response. My doctor comes into the room and asks how I am feeling. He goes over the post-surgical instructions. He wants to wait to turn the power on to the computer. I beg him not to let me go home without it on. “I cannot wait a week, I want to know if this is going to work,” Kelly, the Medtronic representative, comes in and starts giving me instructions on how to use the foreign object. I place what looks like a flat piece of plastic which is cold to the touch to my skin over the bulge. Kelly starts flicking quickly though his computer, that’s when I feel it. The electricity runs from my right hip up, though the wire that was carefully threated through the space in the space between the spinal cord and vertebrae. Short shocks are being sent, almost immediately, the pain washes away, leaving just a dull ache.
Getting up and putting on the face that everyone sees. Hiding the pain with a smile. No one sees the struggle and my guard is always up. Loved ones try to understand but no one can. Going to work, class and doing homework are part of my everyday routine; if I stop the energy may not come back with the ability to keep going. Pushing through and keeping busy is the only way to keep going.