One year ago today, I was supposed to be speaking at an Arizona coalition’s state conference in the west valley. I had been invited to give a presentation on the importance of training first responders how to interact with survivors of sexual and domestic violence and what type of difference the nonprofit I founded [Kick at Darkness] was creating in Arizona.
I didn’t make it.
I was in the hospital, having spent my first night in a looming imminence of emergency spinal surgery, with no idea when it would take place or if I would survive or be able to walk or drive again.
My friends had stayed by my side through the night and day, a flowing tide of support people — both for me in my unyielding pain, as well as for Leesha and Jenny who were my Aaron and Hur holding my arms up…sometimes, quite literally. They helped transition me to the permanent room, someone had gone to my house and brought back items from home like a diffuser for calming oils, my bear that had been with me during the coma, and a TARDIS pillow from Doctor Who. They knew me and what my soul needed.
The team of neurosurgeons had sent their representative to my bedside in the new room. I am uncertain if he was the leader, or if he drew the short straw to tell me his news. I looked up at his giant frame towering above me, my neck straining to see his face. My arm was propped up by pillows beneath it, towels around me adding fuller pressure to try and mute the pain as I sat in the bed, unable to lay down. Not being able to keep my head at an angle to see his face as I noted he chewed his cheek, but did not bend so I could see him, so my gaze fell to his mid-chest.
He stood above me, rocking anxiously on the balls of his feet, penguin-flapping his arms at his sides, nervously tapping his legs with his fingers, “Unfortunately, we cannot fathom what we need to do.” His team had already determined they didn’t know how to operate without killing me and they had sent all of their suggestions to the expert neurosurgeon whose arrival they were waiting on. Doctor Laura Snyder would lead their team.
“She is reviewing all our suggestions as she makes a plan. So far, all of our plans have been sent back to us. I therefore cannot tell you what will be planned for tomorrow. She will come see you soon and answer any questions.” He ended in a mumble of words all connected without breath or break for us to answer, basically asking if we had questions and thanking us for not having questions at the same time. I looked to Leesha, confused; she slowed her words and bent down to my level — speaking between the waves of drugs and overwhelm. She told me we could ask Dr Snyder all of our questions later.
Morphine was the great steadier of my pain; technically, you are very much still in pain, but you simply do not care. It’s like being able to mute a troll you’ve accidentally met in person. It was levels better than the crippling pain I could barely move in. But its side effect was I couldn’t keep up with any of the information very well. And, the most obvious one, was absolutely everything was hilarious to me. Normally, I think pretty much everything [even in the middle of catastrophe] has humor within it. But this was a megaphone of hilarity and silliness, as well as a powerful calmer for all the parts of this journey that non-drugged BilliJoy would have had serious issues with.
Due to my past trauma, no one had ever seen my unclothed body. It just didn’t happen. Ever, when it was in my control. I had often wondered what it would take to get me over the trigger fear of being seen. Now I know. My friends had created a support team to come and be with me throughout the day and night, because I could not do things on my own, and the nurses were not able to be at my side all the time. Some people I knew well, and others I barely knew. Yet all of them helped me to the bathroom, helped put Tiger Balm, Arnica gel, and Essential oils all over my exposed shoulder, neck, and back.
Jenny and Leesha sat with me as Doctor Laura Snyder arrived. I named her Dr Laura Croft after the badass warrior in Tomb Raider. Dr. Laura Croft was a calm breath that entered my room. She grabbed a chair and sat in it near my bed, putting one leg across her own, resting her foot on her knee. Relaxed. Not nervous. Not threatening. Not intimidating. I instantly trusted her.
She first told us that she had rejected the plans that the team had created, because the first one would have killed me on the first cut, and the second one would have, at a minimum, paralyzed me.
I could barely breathe as I listened, curling my toes under the sheet, wondering if I’d be able to still do it after the operation. She then told us the general plan of the surgery she had planned.
**If you’re squeamish, skip this portion, and look for the next set of asterisks to restart.**
She was going to go in through the front of my throat. They would move aside my vocal chords, esophagus, thyroid, and clip them as they went to my spine in the back of my throat. She would remove all three discs impinging on my spinal cord, clean them up, and if they weren’t destroyed, replace them. But if they were destroyed, she would fuse them by drilling into the vertebrae and installing cages like trellises for the bone to grow into. It would add a centimeter to my height.
The dangers were high for many different things. But the one that wasn’t life threatening, but was way-of-life threatening, was the possibility my vocal cords would be damaged and I wouldn’t be able to speak. I already have damaged vocal cords from a car accident and coma and intubation. I cannot raise my voice for very long without it hurting. I valued having ANY voice, and I might lose it. I cried. I held my throat.
The other, more sinister dangers were the potential still of paralysis (and, she didn’t tell us she worried about it but death was still on the table as a possibility).
**restart reading for squeamish readers**
After explaining the procedure and dangers, she told me that she was surprised I had not been having symptoms for a very long time. One of the discs had been knocked into place farther than the other two, but it was kinking my spinal cord and preventing my brain from getting what it needed and doing what it needed.
“I’m surprised you haven’t been having memory problems, and difficulties with recall for even simple things like basic math or songs. This injury came from a fall that jammed your arm, knocking the discs into your spinal column, so I would have thought symptoms would have been happening for a while. She listed off seven or eight other symptoms and my body trembled as I sobbed. “You’ve been having all of them, haven’t you?”
I nodded, telling her how I had not been able to remember song music or lyrics. Like even the birthday song. I couldn’t remember it. And I couldn’t even add two and two without a calculator. I had gone to the doctor, and they told me it was my thyroid, but because I didn’t have insurance, I couldn’t see any of the specialists they had recommended. I am a private person (a 5w4 on the enneagram), and can share some parts of my life fully, but keep other so hidden, even the closet to me do not know.
Jenny cradled my head from next to my bed and kissed the top of my head, grieving with me that I had told no one and suffered alone. She whispered through tears, “Our poor little five.”
Doctor Laura assured us if the surgery was successful, and my spinal cord rebooted (meaning it started to fill itself back up like a memory-foam mattress), then she expected I would slowly regain every bit I had lost — physically and mentally.
But the surgery itself is jolting to the spinal cord and brain. And since my brain had already been straining to the max to think since the injury, trying to keep me working at my job, and also keep my heart and lungs going, it was stretched to the limits of its ability.
The surgery removal of the pressure on the spinal cord causes a rebooting in the system that includes an inability to multitask or answer questions. This isn’t like “you won’t be able to lift more than 10 pounds” but you try and sometimes succeed, even if it hurts. No. Literally. It is like having sand in one hand and being handed marbles to count and juggle in the other while someone checks your reflexes. The brain can do one thing at a time. A question like “Do you want to eat and then lay down?” would be too much for me to handle. It had to be broken into two parts and people had to wait for me to process each part.
This section of the healing journey, on top of the physical pieces, would be most difficult for others around me to navigate and most strenuous for me to survive.
Doctor Laura looked at me with her leg still calmly crossed, and asked me, “What do you need from me?”
I had so many questions, so much I desperately needed to know, but I was trying to swim through the meds, the fear, and the tears to get to where I could ask. Jenny and Leesha and the other people standing with us (I apologize to everyone that I cannot remember who exactly was there) asked questions for me and took notes.
We had a plan. We somewhat knew what was coming.
But the truth was, we didn’t at all know what was coming.
The surgery was scheduled for the next day at noon (a year ago, tomorrow). I had been given so many pain meds in such a short amount of time, I had not been able to use the restroom sufficiently. I would not be able to bear down after the surgery, and it was becoming absolute desperate to make something happen. The meds weren’t working. Essential oils had done nothing. Drinking and the IV weren’t causing anything to happen.
Jenny ran out and got prunes for me. In nervous fear of having a spinal surgery while constipated, I ate a handful of them, and nothing happened. So I ate a few more, and a few more, nothing happening. I had eaten half the bag when one of the support friends picked it up and read it saying, “They are probiotic prunes, so you’ll only need a couple to make things work. Don’t overdo.” I felt like Merry and Pippin, in Lord of the Rings, when they are told they only need a small nibble of the elfin lembas bread to fill a grown man’s stomach. They look at each other, uncomfortable, having each eaten several full loafs.
“Uh oh,” I responded. Well, things should be REAL interesting tonight. I guess I won’t have time to worry about tomorrow. I asked, “Who is on the schedule to be with me tonight?” I was hoping it wasn’t someone I barely knew — I could imagine the impression on their poor soul.
“Your sister is.” I breathed a sigh of relief, and then started to laugh uncontrollably. I hadn’t been able to spend much time with my sister in the last couple decades, and I had been praying for an opportunity to deepen our relationship, to spend time together. I had, obviously, assumed it would play out in a far different way.
Today, we refer to that night as poop-apocalypse. And that is absolutely an understatement. Because of the massive pain meds I was on, and the inability to use my left side of my body, I had to have help every step of the way from the bed to the bathroom. Technically, I was not to move out of the bed AT ALL without a nurse present. The other support person could help, but the nurse had to be present.
After the second she-didn’t-get-to-the-room-on-time explosion, the nurse wiped the sweat from her forehead, glancing back at the trail of doom that followed us into the bathroom and suggested — through my laughter and sob-howling that THIS was happening — that my sister could help me get to the bathroom without her, and we could simply notify her when I was in there.
I remember my poor sister having to squat next to me, holding my left leg’s weight so I didn’t tip off onto the floor (short girl here, couldn’t stabilize myself on the throne and also lava butt-vomit within an inch of life). The meds make the memory of this as total insanity in my mind.
One time, as my gown had been soiled, again, and the nurse was cleaning me up and trading gowns and protecting the IV, and my sister was balancing my leg and massaging my arm that was searing in pain, I chuckled in disbelief, and asked her, “So, how has your life been? What’s been happening?” She talked and told me stories from her life and it felt so calm, like we had gotten tea at a cozy shop and were visiting, not like we were sweaty and weary in the middle of a poop-apocalypse. I cherish this very odd memory. It was a spectacular night with my big sister.
According to texts of updates to my friends throughout the night — as I begged them to pray for my life, because I knew this was going to be the death of me — we stopped counting at 35 explosion runs to the restroom and finally the nurse had located a commode to be by the bed. I was exhausted and delirious. But the laughter of the ridiculousness of what was happening filled my soul.
The time of my surgery was approaching and I was now ready. Sore from the lava burns, but thankful I had one less thing to worry about on the other side of surgery, I was surrounded by family and friends who were carrying me every step. Now I simply had to focus on surviving the impossible. We knew it was going to be dangerous, but we only found out months later that I had a 1% of 1% of 1% chance of survival from this surgery (.001%).
The difficult level we expected the journey to take was nothing compare to the difficult level coming. I’ll write more as the days continue on this one-year journey honoring all we made it through. We survived. We held onto each other tightly. We made memories. They were my badass army, and I was a fallen warrior hanging in the balance.
#SCI #SpinalCordInjury #TBI #TraumaticBrainInjury #InternalDecapitation #PoopApocalpyse #BigSister #Memories #BeejHealth