As I prepare to write today, I carry my iPad and a pack of gum to the table that has the Bluetooth keyboard. It’s about twelve steps away, but it is a maze of creativity to reach the chair. The TBI prevents me at times from walking forward if I have too many items in my hands, so I must spin or side step, or dance. Today, I walked backward to the table, noticing how I barely have to look behind me to meander around the same obstacles that become impassable if I can see them walking forward.
Writing has exhausted me. Today I got up and had my breakfast and laid back down, waking to engage with friends on text or online, but continuing to nap, weary, and exhausted. Finally, at 3:30pm, I rose. My mom has been begging me not to continue to write, because it looks like it is killing me — taking all my energy and brain space. But the problem is, my internal world is writhing in pain, because I cannot process what my body and brain and mind and soul and spirit are remembering from one year ago. The whirling memories are locking my internal world in pain, and I need to get through it. I need to write. I need to be seen. Because I feel very alone — even with all the amazing support I have “out there.” I’m in here. And the only thing allowing me some respite is pulling myself to the battlefield of words and writing.
In the upcoming stretch of days, I am partially relying on my own memory and then also on the memory of those around me, picking their minds all year for stories — yet having a difficult time navigating the details or remembering them afterward. So today many friends messaged me with notes and clarifying points, but still, I ask them if I missed anything or something needs to be clarified, please feel free to do so in the comments. Absolutely, I need you.
One year ago today, Sept 19, was my surgery for my spinal cord injury. I was at St. Joe’s Barrows Nuero Hospital and my team was the elite in the world, called in especially to conquer the impossible situation of injury in my spine. The night before, my big sister, Mel, stayed with me, watching over me, helping me. I had accidentally overdosed on prunes in order to prepare for the surgery and she and I had some *special* memories created. She left at six in the morning, and Leesha was arriving after nine. Another friend came and stood in the gap of those three hours, listening to my fears and laughing through the tears.
The night before, Jenny had brought her little four-year-old wonder, who I call S Man. He loved on me and listened closely to what we were doing to help me not be in any pain. I cherish that little boy with every cell in my being. Blessed little one. Throughout this journey, S Man became a vital piece of my healing. He would be the one able to teach me how to use a spoon when I could not grasp the concept, or the one to convince me to follow and stay close, as I could easily get lost. He encouraged my soul with his fierce bravery, and he still does. Remembering his growling cheers the night before that I was going to warrior and beat this injury…made me smile.
A couple dear friends, Lindsey and Tasha, I worked alongside in the advocacy world from an Arizona coalition had come to see me before the surgery. They had told me the day before they would come at 9am. I was so thankful for their support and standing alongside me, encouraging me and lifting me up. My mom, who was healing from her own back surgery and had a follow-up appointment with her surgeon at the same time as my surgery, had planned to come at 10am, before my surgery prep.
Out of nowhere, a doctor walked in. I had never met him, and didn’t know why he was there. He looked like Woody Allen in a white coat, and he was holding his head at an angle, parallel to the ground, his palm flat against his cheek, his other hand supporting his elbow — effectively folding his presence into the number seven. Perhaps he was trying to reach my eyes as I sat in the bed, or perhaps he was just being himself.
He said, “In preparation for your surgery, we run a lot of tests. One of them is the heart EKG. We ran that on you, and it showed you’re having a heart attack.” He stopped talking as the room lost oxygen, and I burst into tears, my friend grabbed my shoulders and encouraged me. His voice continued, “But, you’re not.”
I stared at him, unsure if I should rage, laugh, or cry. What the hell? “Why would you do that?” I asked him. He told me he was “required” to deliver the information to me, and the machine was simply mistaking my breast tissue for a heart seizing. “So…there were a million ways. you could have delivered that info without terrifying me…why did you pause after telling me it showed I had a heart attack when all it actually read was I have large boobs?”
He stuttered a non response as I clutched my chest, equally seeing the hilarity and having the adrenaline coursing through my veins thinking I was going to need open heart surgery before I could have spinal surgery. He left, still cradling his head in his hand as his body leaned out to the side.
We all chuckled at the strangeness of the interaction when we began to visit again, talking about the fears and the love of the community for me. Then Mom and Dad arrived forty-five minutes early. And my heart anguished, because I longed for the quiet time with my friends — quiet time I didn’t get often, due to our incredibly full schedules. And we all knew my brain was going to be very different on the other side of the surgery. My frustration was evident as I asked my mom to wait while I talked with my friends, assuming I would have time with them afterward. But she was in severe pain (after her back surgery she was unable to take any type of pain med, because of other meds she was already on for her arthritis). Dad had pushed her in the chair, all the way up to see me, and he was weak and in pain himself. Emotions were all on edge.
The nurse came in and told me that I would be needing to head into prep soon. Lindsey and Tasha told me, “Your badass army — all the people whose lives you have touched and helped, all of us, we love you and we are cheering for you.”
My mom chuckled, apparently thinking she was saying a joke, “Yah, well they have to say that, don’t they? They are standing right in front of you.” They again said it and my mom shook it off, her pain and the stress of potentially losing me apparently messing with the moment. But I lost it and burst into tears. Streams of tears washing down my face. My friend squeezed my shoulder for comfort and Lindsey and Tasha stood to give me a hug.
Suddenly — as if a cue card had been thrown down — the tiny doctor came lunging back into the room, waving his hands in the air as if he was stopping a 747 from taking off, “I said you’re NOT having a heart attack! You’re NOT having a heart attack! Please hear me, you don’t need to cry. You’re not having a heart attack!”
In shock and then laughter as tears gleamed on my face, I said, “I got it. And, the tears aren’t because of what you said.” He stood there, like a thespian who forgot his lines, then nodded and walked out of the room.
The nurse entered stage right and let me know it was time. I had to go. I waved to my parents as the bed began to be pulled out the door, and Lindsey and Tasha leaned down for a giant hug to leave me with as they stared into my eyes, “We CHOOSE to love you. Not because we have to say it. We CHOOSE. All of us love you. All of us will be waiting. You’re going to make it.”
My eyes were filled to the brim with water as they headed out the door and I clutched the purple Force Field blanket my friends had sent me. The tiny unicorn and blue bear — both promises of community and of hope of surviving — snuggled with me as the nurse prepared me to head into the shower. The nurse and an aide (I think, maybe it was my friend? That’s fuzzy) moved me carefully into the shower and scrubbed me from top to bottom in yellow bubbles of antibacterial power. Leesha had arrived just as we headed to the shower, and she called from the outside that she was there. Stabilizing my panic.
I was back in the bed, warm new sheets, new gown, dry and smelling like a dial soap factory. They had re-wrapped me in the purple Force Field and I clutched Leesha’s hand as the unicorn and bear sat on my knees. The bear had been given to me when I was in a car accident and ended up in a coma with ARDS and a 1% chance of survival. A greater chance of survival than the current road before me (1% of 1% of 1%).
As my brother arrived, holding my knee and staring helplessly down at me, telling me I was going to be okay, I was on the phone with friends in Oregon. Morgan, Jen, and Keith were three people who had joined Leesha and Jenny as my core support team making decisions through the health thriller adventure we were on, and would be on for weeks and weeks.
The neurosurgeon, Doctor Laura Snyder — who I called Dr Laura Croft, because she is the badass warrior from Tomb Raider — came out to talk to me and briefly tell us again all that she was going to do. She would go through the front of the throat, moving aside all the things, and directly interact with my spine at the back. She would remove all three of the discs that were impinging on my spine, and if they were salvageable, she would clean them up and return them in place. If they were not salvageable, she would put cages in and fuse the vertebrae (I did not know how in-depth this is, and how much excruciating pain it would cause alongside the nerves that would be newly un-impinged, no longer down).
She assured me she knew exactly what she was doing and she believed it would be totally fine. It was months later we found out that she wasn’t sure she could accomplish it without killing me, but I was doomed without it, for sure, and I had a chance with it.
After Dr Laura, the “closer” came out. She is the surgeon who closes the wound up at the end and makes it all pretty. I told her if something happened that more had to be cut than we thought (like my dad’s nine-inch battle scar that was supposed to be two inches), then I was requesting her to make it look like a shark attack or survival of a horrific knife war, not a long cut across my neck that looked medical. She laughed and assured me if something like that happened, she’d make me proud.
The anesthesiologist arrived and told me not to worry. I had a badass team of women, the top in their field, and he was the male addition to the team. I chuckled the way he said it; I trusted him, because of his honor of these amazing women and their respect for him.
I wouldn’t be allowed to take the Force Field or bear with me, but he said I could hold onto the tiny unicorn. Leesha wrapped herself in the purple blanket as she squeezed my hand, letting me know she would be right there. All my people were waiting. They weren’t going anywhere. The anesthesiologist said something to me and I nodded to answer, dropping straight into oblivion.
I woke to bright lights and a BEEP BEEP BEEP in the background. Voices. I couldn’t move my head or neck. A man, a nurse, was trying to move me from one bed to the other, and he placed his hand on my upper chest trying to prevent me from moving, urgently saying, “You have to trust me. Do NOT move.”
Leesha had just been walking outside to call her husband, Wes, and update him that I was out of surgery when a nurse came barreling down the hallway after her, “Leesha! You have to come with me. Come with me now!” Apparently, I had punched the male nurse and I was in a state of confusion and hallucination from the meds — mixed with my PTSD from my trauma from men. The male nurse told Leesha she was to stay with me no matter what. We were still in the part of the recovery where laypeople were not allowed, but he gave his absolute permission, command, that Leesha was not to leave my side. And, she didn’t. I had woken up an hour before they intended me to and the world was not how I left it.
Leesha cradled my face and called my name, through the haze of drugs and panic and pain and hallucinations, I heard her and finally saw her face. I relaxed instantly and began telling her we had to get to work. I saw thirty girls around us that needed to be rescued from trafficking. We were in a train station, and we had to help them. Because of waking up too early from the meds, all that was happening in my mind resolved itself into memory, not dream that passed out of my mind. To this day, I do not recall what the actual room looked like, but I saw a the train station and Leesha and I needed to rescue the girls. Taylor, another friend, had brought Leesha some food and she and Leesh told me Taylor had gotten the girls to safety, and for the first time, I could calm. They were safe. We did it.
I don’t exactly know how to describe the pain I was in after the surgery, but if you can imagine a chainsaw through your upper spine, electricity jolting it, and boiling tar being poured into the cracks, that would come close. But the arm pain was mostly gone.
Two days later, I talked to a friend whose wife had just had a double mastectomy and he asked me how much pain medicine I was on. I had several different pain meds, but the one I could think of was oxycodone. I didn’t know what a regular dose was, so couldn’t judge if my dose was high. I was taking 20 mg every four hours. He gasped and said, “Well, for comparison…Susan, who just had the double mastectomy started at 5 mg every eight hours.” That jolted my system. I understood. If, after all the pain meds they were giving me — plus the ice, plus the tiger balm and essential oils and arnica and CBD oil and CBD gel — it still left me feeling like I had a chainsaw in my neck, I really really didn’t want to know what it was like without the meds.
Because of the mixture of pain meds and sleeping meds, I was hallucinating, though I never hallucinated about people outside the first hour of seeing the girls to rescue. Instead, I continually hallucinated the landscape changing, being in different rooms than I was actually in. Several times I asked Leesha if we could go back to the ice cream shop, or to the aquarium, or the massage parlor, or the laundry room…and each time her answer was, “You’ve didn’t leave this room.” It rocked my world, because I distinctly saw differences. The psychiatrist and my therapist said they believe it was my brain trying to create an escape for me because of the pain and fear.
But hallucinating wasn’t the only problem the meds were causing. Every time I fell asleep, even for a nap, I woke without knowing who I was.
I had zero information in my head about my history or name or the city I was in. I didn’t know what happened to me or why I was in the hospital. I vividly remember the first time it happened. I woke as if I had been loaded into a video game without memory. I looked to the side of me and someone was sleeping. I didn’t know who they were. I searched for any information and found none, but saw the nurse’s button and pushed it. I had to use the restroom, and didn’t know where it was. Where I was.
When the nurse came in, I told her that I didn’t know who I was or who she was. She didn’t panic, but calmly said, “That’s okay, it’ll come back. Let’s just do the next thing you need. I can help you to the restroom.”
That was the only time the experience was calm and not filled with tears and panic as I didn’t know the faces surrounding me, calling me by a name I didn’t recognize. Each one of my friends has stories about the pain of seeing me hurting and panicking and them seeing zero recognition in my face of who they were. I didn’t know them. I didn’t know my sister. I didn’t know my mom.
My friends would have to tell me not to move, or try to get out of bed, but they first had to convince me I hadn’t been kidnapped or that this all wasn’t a giant prank or the world wasn’t ending. They had to navigate my PTSD that was wicked intense and constantly rising due to the med interaction releasing cortisol into my system by the tonnage. And my support team friends and fam had to do it at the level of a toddler. Because the traumatic brain injury had eliminated any type of multi-layered understanding. I was a badass toddler. If a toddler could not understand the interaction or the explanation, I couldn’t.
Bless my poor, badass army that exerted so much on the battlefield of keeping me safe and helping me. The adventure continues and takes absolute unexpected turns that shocked all of us and pressed my team to their limits.
I’ll write about that as I can over the next few weeks. For now, I need to recover from the emotions involved in this journey. Very few people understand that even though the powerful good things are AMAZING, like my support team, like surviving the impossible injury, like overcoming so so much, like being out of the arm pain that could have crippled an elephant… STILL, my world was transformed that day. I not only had the unending pain and inability to think (the slowest part of this injury to heal, and is still healing), but my freedom, my autonomy, my independence, my privacy, my job of being the warrior in battle… had been thrown open and wide.
There is a song by Finneas that hits me deeply. It’s called, “I Lost a Friend.” When I listen to it, I hear the agony of losing my brain, my world, my semblance of control of my life. There is a line that says, “How the hell did I lose a friend I never had?” And it hits me to my core, because the control and self-reliance was always a veil covering the need for community — I never truly had it. And still, I mourn the loss. The ability to walk without wobbling, or the ability to traverse a doorway without my brain stopping me in the middle of it, suspended in muscles refusing to work. Or losing the ability to follow shows or books to the end. Or the ability to use a computer. Or write without getting to a point where I can only finger peck, because my body and brain are in capable of carrying on.
I lost a friend.
The music video of that song is an amazing image of community surrounding loss. There is a point where he collapses and the people around him catch him and carry him in a dance through the field. A beautiful painful dance.
Barbara DeAngelis said, “The moment in between what you once were and who you are now becoming is where the dance of life really takes place.”
Indeed. The dance inside the chrysalis. Becoming something that has learned how to fly in the darkness, without wings. Something that has gained strength through weakness and dissolving of all that once was. Something that is resonating in power through the dance in the chrysalis.
All of us have those moments. This was mine. This was ours.
I’ll write more soon, but for now, I need to mourn the loss of my friend and take special care of my overworked and overtired brain and body.
Thank you, badass support family for carrying me in this utterly difficult and painful, yet beautiful dance.
#SCI #SpinalCordInjury #InternalDecapitation #Surgery #BeejHealth