One year ago today, my world tumbled out of control. I had been clinging to a hope that my life would go back to what I had known. But the last grips on that world failed. I tumbled in a free fall. I could see the ledge where my life had been carrying on, and I was falling farther away, no safe ground in sight.
On Sept 17, 2019, my parents took me back to the Urgent Care with Dr Ashwin Patel to find out what the MRI results were. Back on Sept 3 was my first visit — the same day I had gone to the emergency room and they sent me home without any tests, telling me to “learn to manage” my pain. A pain that had shown up out of the seeming blue and crippled me. I had to bite down on towels and scream just to make it through the days, breathing deeply to survive the levels of pain in my arm.
We pulled into the parking lot, my arm in a sling and pillow under my shoulder to help wedge the nerve in place. I cradled my arm, barely able to move without screaming. We signed in and waited. We assumed maybe I would need surgery, but if so, we could schedule it for next week after I prepared.
Tears steadily fell down my face, unable to hold the pain in check. They called me back and my mom stayed at my side, worry molding her face. My dad tapped his keys as he nodded he’d see us when we came back out. The MRI results were not back. The first failed attempt at the STAT MRI — emergency needed — had been on Sept 10 (see post). We had rescheduled it in an open MRI on Sept 13 (see post) and it was now the 17th and the doctor still not have the STAT results. His office called them to fax the report to him.
There is a lesson here that I hope no one else has to learn on their own. Never watch your doctor read a medical report in front of you if they have not heard the results yet. Dr Patel sat across from us, the rolling chair silent on the tile, his chin cradled in his hand as he read. His shoulders slumped and his face read such anguish, I burst into tears before he spoke. “This is, uh, not good.” He scooted closer to me and placed his hand on my knee. I shook with an inability to breathe. “But it can be fixed if we get you to the right people.” I need you to take this report, and head straight to St. Joe’s Emergency Room and tell them they need to do emergency spinal surgery on you today. Tell them you are in imminent danger of dying.”
My lungs forgot how to breathe. My skin holding together a balloon of emotion that didn’t know how to function. I looked to my mom, hoping she understood what needed to be done as the pain washed up and over my entire being. A guttural release exited my throat. “I’m scared.”
Doctor Patel stood and said, “They have the very best. The very best. They will take care of you. Do not go home, now. You go straight there.”
We walked back out to the lobby and Dad’s face was white as he listened to Mom give the synopsis of what had to happen. We had to go. Now.
We asked Dr Patel if we could pick up a copy of the MRI to take with us, because I knew I wouldn’t make it through laying flat for another test. He agreed, but said, “Only that one stop. Do not go anywhere other than the ER and tell them they have to operate today.”
I remember the view out the window being blurred by tears and my parents muffled and worried whispers as they drove me. I sent a voice message to my friends and asked them to share the update.
Leesha and Jenny mobilized the army of support online and in texts as Leesha fought to get to the hospital, needing to find childcare first. My phone became a constant state of vibration as if the community itself was trying to send a Morse code of “You are going to be okay. We are here.” Thought the texts tittered onward, I couldn’t read them, blinded by tears and holding my arm in agony. I shifted my feet and a thought whirled past my brain: would I be able to do that much longer? Would my journey end in paralysis? Or beyond that? Thankfully, I didn’t know enough about biology to be as scared as I should have been.
We arrived at the ER and my parents navigated a wheelchair for me, leading me inside as my mom answered texts and calls from family. The line of people waiting to see the receptionist at the ER twisted hopelessness through my brain. I didn’t know how I would pay for any of this. No insurance. And I had used up every resource I had in the six months since my fall as I lost clients and was incapable of getting more because of the pain in my legs (see previous posts explaining how the nerve trauma showed up in my legs first).
Finally, after nearly an hour, we made it to the front of the line and I sobbed what the doctor had told me and I handed her the report. I was immediately taken to the side and I heard Leesha’s voice. She had just arrived, and I could feel my gut unclench as if I had been holding myself up on a zip-line and suddenly realized I had a safety harness on and I wasn’t going to fall.
Paperwork passed all around me as so many questions I could no longer comprehend faded into the background. Leesha filled it out. “I wrote you down as my medical power of attorney,” I looked at her. I don’t remember asking, but she nodded, letting me know she had me. “If something goes wrong, and I’m body alive but brain not, I don’t want a delay. I want as many people to be saved with whatever organs I can give them. I don’t want to be kept alive in hope and then none of the organs usable.” It felt so odd saying the words out loud. But I knew she would honor my choice.
The pain was shaking me and we asked a nurse for something to help and maybe ice. She turned to face us and haggardly said, “Choose one! One thing. That’s what I can do.” Throughout the night, that became everyone’s answer as we laughter amidst the trauma and fear and pain.
I had chosen the ice, but when it wasn’t doing enough, we asked her again for pain meds. She told us she would get morphine. I had never taken it and didn’t know what to expect. Neither did I know how fast she would add it to my IV. I was facing Leesha and talking about the show we were watching on the iPad, [Schitts Creek] when the tsunami of morphine hit me. The laughter that had been springing from my lips, about the comedy that was getting us through the pain, suddenly turned into a contorted and very concerned face. I could feel emotion washing across my body and in a lurching sob, I grabbed Leesha’s hand, “Leesh, Leesh! I didn’t tell my pillow I wouldn’t be home tonight! It won’t know! Leesh!”
At first, Leesha thought I had just tipped off the edge of pain and into insanity, when she saw the nurse finishing the morphine behind me. Concern turned to amusement as she assured me she would tell my dad to go tell my pillow I would not be home. I cannot explain it really, but I was fully aware of the idiocy of what I was worried about, AND, I was fully, 100% concerned. Both. And.
The morphine is like that. You know you’re in massive amounts of pain. And. You don’t care. It’s like the pain is shifted out of focus, or just in-between channels so you can’t fully tune in. It’s there. And it isn’t. Glorious glorious morphine. It was the first time in almost three weeks that I wasn’t living in level 15 pain.
Leesha stayed at my side as they took me a CAT scan and x-rays and got me settled in a room. I was in Barrow’s Neurological, one of the top five neurosurgery hospitals in the US. Their elite team took a look at my tests and came to talk to us. There was a problem. They didn’t know what to do. What was wrong was three of my discs had been jolted out of place, jammed up my arm, from the fall. And, unlike other people, my discs were bulging inward, impinging my spinal cord. The layman’s terminology: internal decapitation or walking decapitation. There wasn’t enough of my spinal cord left to measure a single unit. Yet it WAS still attached. For now.
But the team said they didn’t know how to do surgery and not sever the little bit that was holding on. They had to call in an expert. So my surgery would be delayed by one or two days. It ended up being two days. And the badass expert in the field? A woman. I had to smile. That fit. All the way around, that was utterly appropriate for me. And so we were told they would make me as comfortable as possible and limit my movement as they waited for her.
Leesha and Jenny were pulling in communications online and trying to prepare a way for support to be with me through the coming days. I remember a lot of laughter that night, Leesha and I were reprimanded more than once for laughing as the nurse smirked at us. My humor and laughter would be a key strength to carry me through these days that would follow. Days of seemingly no hope, only darkness. Days surrounded by so many badass warriors helping me not drown. Days where new acquaintances became dear friends.
I’ll write more about them in the coming days as I honor this journey we have all been on. That my body and soul have endured.
But I also need to honor my body and brain of today. Most people assume I have been sitting down at a computer to type up these updates and looks back to a year ago. Perhaps knocking it out in half an hour like I used to be able to do. No. The TBI (traumatic brain injury) is here with me, making the journey creative and hard, difficult and painful. I am finding ways. Some moments, I have to cradle my head as my skull screams in agony, because I have used my brain too much to write. I rock back and forth incessantly, a remnant of my nerve damage healing from my spine.
Right now, my eyes see double and my head is hurting in the center of my eyes and nose so severely, it is as if I was slammed in the face with a fast-flying basketball. It burn-hurts. Because that is a symptom of the TBI overuse of the brain. I sit in dim pure-white light to write, because any other color affects my brain faster and harder. And I am barely making it through typing. Not on a computer, but an iPad. And it hasn’t been half an hour, it’s been three days. Five or so hours a day. Trying to write this. Piece by piece putting it together.
This journey is definitely not easy. But it is worth it to honor what I made it through and all the people who got me here.
I know my parents and siblings were there at the hospital with me some, but the only face and voice I fully remember on this day one year ago, is Leesha as she held me and stabilized me through the pain and fear and unknown.
Thank you, Leesha, my Samwise Gamgee. For coming with me on this journey and letting me know every step of the way that you wouldn’t let me go.
Thank you all my support army that rose up to carry me and to carry Leesha. And my family. I love you all. I hope to honor all of you in the writings to come.
This is survival. This is pain. This is love.
#SCI #SpinalCordInjury #TBI #TraumaticBrainInjury #InternalDecapitation #BeejHealth