March 9th. It’s been one year. Today.
I remember the dirty pavement. On my hands and knees, stunned, a group of women near me gasped. I ignored the flutter sensation up my arm, and paid attention to my throbbing knee.
Trying to stand, I looked around. Slowly rising. Everything in me wobbled. Clanging. I was confused and hurting. Embarrassed.
I was going to be late to my next meeting because I slipped in oil as I stepped off the curb in front of the service station’s doors. I messaged my next appointment I was running late and then reported my fall to the management, asking them to clean up the oil again and again.
I was confused, adrenaline pumping through my system. What I didn’t know that day nearly killed me. Or, at a minimum, paralyzed me.
When I fell, my arm jammed into my neck, propelling three discs straight into my spinal cord. I had felt the flutter — but the pain showed up in my legs. So no one ever looked at my neck.
I had been racing from one appointment (for nonprofit work with survivors of sexual and domestic violence) and had been headed to another event for the same. The months previous, I had been running nonstop in the fight here in AZ to get the first rape crisis center. I spoke all over the county and state with my own story as a survivor.
And suddenly, I was on the sidelines — I could not walk. I tagged other volunteers to start going to events in my place, assuming I would be on my feet shortly. But the pain persisted. PT made my life possible. But I needed a walker and then a cane.
I slowly began to get back into life. Mostly while I was laid up in bed, keeping the fight online and rallying volunteers and organizing the nonprofit work. Then I finally got back to drive and be on the front lines, even though the pain was excruciating. I wore three feet of KT tape on my legs, hip, and back, just to get through the day.
I can handle pain, but it was the memory problems I was struggling with surviving. I couldn’t explain how I was suddenly forgetting people’s names and faces. I was forgetting appointments and responsibilities. I was forgetting song lyrics and math. The day I could no longer remember the music or words to “Happy Birthday,” I sobbed, telling no one, because I felt something horrible was defective with me (it was, but not what I was fearing it was). The doctors had no answers for me. They simply said, “Stress, thyroid, or your PTSD.”
When I would speak at events, when we reached at the Q & A time, when someone asked me a question, I couldn’t remember the beginning of someone’s question by the time they got to the end. I was imploding and no one had answers.
Then, six months later, in September, we found out what the problem was. Overnight, my arm exploded in pain. Unbearable. Inconsolable. My friend, Leesha, raced me to the ER in the middle of the night — we got no answers, and the next day an urgent care doctor finally helped. After an MRI, the doctor told me my life was in danger. At a minimum, I was about to be paralyzed and I needed emergency spinal surgery for a spinal cord injury. Leesha became my medical power of attorney (she DID say she wanted to be a social worker, so I was just providing the labs and experience lol, but really — thank you, Leesh, for diving into the deep end of a very wild ride. You are badass and amazing).
I thought the doctor was joking. Clearly, I slept wrong and kinked my neck. No. I was in severe danger. They rushed me to St Joe’s for emergency spinal surgery because I had an internal decapitation. There was not enough substance left in my spinal cord to register and yet it was still barely connected (insert a Nearly Headless Nick joke here).
Badass friends descended around me. An army of volunteers and support.
The neurosurgeon told us the pain they registered my nerves receiving — they had never seen anyone conscious in and it would cripple an adult elephant.
For six months, my brain had been trying to keep my body alive by deciding whether I could remember the words to “Happy Birthday” or if it should keep my heart beating and my lungs working. My brain had been archiving other functions (like math) to keep me alive. And it was exhausted.
After the surgery, my brain was so wounded (Traumatic Brain Injury), and my body was in extreme trauma from the surgery (for comparison, I was on 20 of oxy every 4 hours, when my friend who had a double mastectomy had 5 every 8…I am STILL not down to that amount). At first, I could not feed myself or walk. I could not swallow water or talk. And the spinal cord was rebooting, so I had little to no control of my extremities. The meds caused that every time I woke up — even from a nap — I didn’t know who I was, where I was, what had happened to me, or who other people were. Hundreds of times, my friends had to be in my face calming me, telling me my name and where I was and what had happened to me. They had to experience me not knowing them time after time after time. (Thank you, amazing friends and family, for not leaving me)!
I couldn’t formulate thoughts for problem solving (even as simple as how to let go of a handle) and could not express much to those around me. I was unable to protect or provide for myself. As my spinal cord rebooted, tremors raged through my whole body time and time again as the nerves and muscles fought for their place in this new spinal control.
The meds from the surgery caused my PTSD to roar into nuclear proportions merged with hallucinations — it was horrific and terrifying (as well as at times fully comical, like when a dinosaur ate my bed and my big sister didn’t know how to stop it).
Since I rarely knew who I was, I am so thankful for the ARMY of friends and family and volunteers who descended and signed up to be alongside me. They tried to cover 24/7 to help me through in the hospital and rehab (Leesha, Liz, Jenny, Mel, Mom, Amy, Heather, Lindsay, Lindsey, Francis, Charlotte, Lisa, Tasha, Audrey, Lisa, Tracey, Victoria, Cheryl, Rochelle, Chessie, LaShea, Brianna, Diane, Sanghoon, Kristina, Carolyn…and so so so many more!)
They helped feed me. Helped remind me who I was and I was safe. The hours and hours and hours of friends (usually Jen, Keith, or Morgan) on the phone comforting me as I wept because I had no way to get out. I was in this. The healing and trauma was MASSIVE. And I could not pause it. I could not step outside it. I was in it. Trapped. Terrified. But not alone.
And one friend, Paul — from the very beginning — checked in on me via text and was brutally honest in his check ins. During the really hard and difficult times, he text EVERY day. When the pain was so severe, he text with me all night long, not to give up. I was not alone. I am not even sure he knows how much he was the guard to the edge of the abyss for me. Especially when I could hear my pain, it was so severe. I had no hope. And didn’t think I could make it. (Thank you so much, friend).
After St Joe’s Barrow’s (Neuro), I was moved to an acute rehab (which shall be unnamed, but has—since I was there—been shut down). While there, I was still having almost 24/7 care from my friends and volunteers. Except a few days and times that they were unable to fill. And during those times alone, I was hit, abused, and sexually assaulted. I could not speak the thoughts to be able to tell anyone. I could only say in fear, “They are not the same person when you are not here.” And I screamed inside, scared to be left alone. Terrified to sleep.
When my nurse who I KNEW I could trust (seriously, she is badass, and SO amazing) came back on in night shift, I sobbed. I reached out for her and even though I could not speak the words of what I needed to say, she held me as I wept. I could breathe again. Relieved I was safe.
Thankfully, I never lost things that the neurosurgeon described as being in my “well” where my brain did not lose them. Sci-fi was one of them; we were able to communicate a lot of things via that as a roadmap. Like while I was so confused every time I woke, I created nicknames for people that correlate to sci-fi/fantasy.
When I woke up confused, they told me “you gave me the code name of ….”. It enabled me to know the rank of the person and also if I trusted them (example: one of the nurses I named Palpatine, and another Loki; I knew one I could never trust and the other was questionable; but another I named Okoye — the warrior general in Black Panther — and I knew, no matter what, I could trust her).
My support team listed the names on my white board. I was able to beta test the system, blindly, when I would wake up each time and not know who I was or where I was and scan the room and see the names. I immediately understood at least ONE thing. And it helped me so much and all the medical staff and my support team used it.
It is weird how the brain figures out ways.
When I finally was released to come home, and the pain meds decreased massively, it felt like I woke up on a battlefield. I was clearer minded (still not processing, problem solving, or able to take care of myself). But so many of those who had helped me through the 24/7 care were exhausted, weary, laid out around the battlefield. And I didn’t know how to do life. I didn’t know how to fight in this battle.
It was scary to be back in my own room, but unable to interact with it correctly. I couldn’t feed myself yet. Couldn’t walk correctly as my spinal cord was rebooting still in strange ways. And anything — ANYTHING — I had not intentionally learned before the surgery, I had to relearn. If it was something I picked up in life (like opening a door or washing my hair) my brain had forgotten how to do it.
But if it were something I had learned intentionally (like chopsticks, or getting up in base in Jiu-Jitsu, or texting) I could do it.
I am thankful my mom was able to feed me until I could learn it myself. And Liz has been phenomenal in teaching me SO many things. The longest lesson has been (and still is) how to do a shower; there are SO many moving parts and bottles and lids and soaps and scrubbers and water and balance and alllll the things I took for granted one year ago.
One of my favorite moments was asking Liz how to wash my hair (after she had been phenomenal at teaching me how to get in a car or sit in a doctor’s chair) and she paused and choked out the words, “You just…wash it.” But it required her showing my hands what to do: scrunching up the fingers and moving the shampoo around my head. Yet my mind had forgotten. It was relearning the skill. This time, intentionally.
Leesha and Liz have been at appointment after appointment with me. My parents at most PT/OT and some other appointments.
Jenny and Liz helped me set up my meds so there were alarms on my phones and corresponding boxes with titles or colors so I knew what to do — and which boxes I could NEVER take at the same time.
A four-year-old (S man) taught me how to say in my mind “dig like an excavator and put it in my mouth” when I was trying to learn how to eat applesauce.
A seven-year-old (E woman) taught me how not to panic when trying to do all the things, instead, break it down to just one at a time.
There has been a complete loss of privacy for me over this last year (if you know the enneagram, I am a 5w4 and privacy is number one to me, followed by being independent, followed by being seen as capable…all the things I lost and am slowly regaining). Badass warriors stepped into the privacy space with me and helped me. Lifted the load. Carried me. Warrior army.
They still keep an eye out for me as a round door handle might mean I am trapped in a room. Or an object in my hand might mean I cannot move my feet. Or a person asking a series of questions can shut down my ability to interact (my face physically shifts into what my friends call a buffering face).
And SO many of you have helped with purchasing needed items on Amazon (like tiger balm, arnica, wipes…) and others have donated to the fund that originally helped me get the MRI and has continued to help with life as I heal. THANK YOU. I only know a few of your names, and I have sent as many thank yous as I can, but wish I could do so much more!
My badass army, you are phenomenal.
My weeks have been filled with occupational therapy, physical therapy, and doctor appointments. At home, relearning life.
On my door is a chart of things I have re-learned how to do. “Wash my hair…feed myself…open a car door…carry a water bottle (a few steps)…”
Friends have recorded audio messages for me to use when I need — from telling my body to obey me (a fun side effect of the spinal reboot), to step-by-step instructions on walking, to reminding me I am not alone…to helping me overcome nightmares that I wake from in confusion. I listen to a lot of them every single night.
As for strange victories, when my spinal cord reboot, it brought with it a stronger immune system and also an ambidextrous body. I have been able to remember over 125 songs and the neurosurgeon expects I will eventually regain all that I lost, and more.
My days right now consist of me rocking back and forth — a constant state of things since the surgery. They explained it is the nerves healing themselves. Regaining ground. It is so difficult to live with, side-to-side rocking always. But it is improving.
I am able to carry some things and walk, but mostly I push a cart with my things in it (I have not been able to learn how to pull it yet). If I walk backward (an intentionally learned skill), I can carry a few things and walk smoothly. But my brain has difficulty with doorways. It is like it sees them as solid walls and prevents me from easily moving through them (recently posted a video/post on getting trapped in a doorway by a plate of cucumbers).
I do know that things are vastly improving. I know I have been through hell and come out alive and walking. Yet I am weary. Today it hangs heavy in my heart that I have been off the real front lines for a year. I did some small things in the first six months, but barely anything has been possible since the surgery. My brain overloads or I simply do not know how to solve something.
Thankfully, I am able to write. And I have kept notes along the way. Reading some of my notes (while I was clearly on heavy meds) is quite entertaining. Other notes are heartbreaking. Others bring waves of pain memories and fear.
But one thing is constant: a state of awe. I made it through. The doctors have no idea how I didn’t die from the wrong tilt of my neck or a simple sneeze after the fall and before the surgery.
I only found out recently they didn’t expect me to live. Then they didn’t expect me to walk. Then not to talk. They said I healed physically faster than they expected, and they are impressed how far along my brain has come. Their ever resounding refrain has always been “time will heal.” Time. They simply kept telling me, “you’re doing amazing.”
And I am. Because I have not been alone.
It is still very hard. Some days I can only sit and cry. Others I am on top of the world because I was carrying something and could take seven steps without looking at my feet.
An army of provision from my community and friends has made this year possible. I owned my own business, so there is no fmla or disability. We are in the process of trying to get it approved. But it has been badass friends and warriors stepping alongside me and helping make all the bills and know I am not alone. And I will make it. (If you are interested in helping, just let me know).
Thank you to all who have come alongside me. We are making it, only because we are together. I love you more than I can express. I am so thankful for all of you.
I am coming back. Little by little, I’m coming back.
Oh hey! Another win. I can now use contractions! There was a period of time where my brain refused to allow me to use them, even in writing!
Some other wins:
- I CAN SAY “NO”: I defaulted to “yep” for ANY question, and only my support people knew to keep asking different ways to figure out my real answer (for example, someone could ask me if I liked the Cowboys and I would say “yep!” but my body language clearly was cursing the cowboys
- I CAN SLEEP IN A ROOM ALONE: for months, someone had to be present as I would wake terrified and confused, and if I choked, I was not capable of calling for help
- I CAN OPEN A CAR DOOR: before, I could open it an inch and my brain would instantly slam it
- I CAN FEED MYSLEF: before, even in rehab, no one yet knew I couldn’t feed myself and I went a week without eating as everyone assumed my stomach was upset or I had something wrong; they would ask me if I was hungry and I would say “yep” and they would ask if I could eat and I would say “yep” because even I didn’t understand why I was unable to get all the food off the tray and into my stomach
- I CAN BE ALONE: before, I was a “badass toddler” as the doctor called me; if a toddler could not solve the problem, I could not; this meant life or death things too; I could not be alone in the room, and now I can be alone for a few hours of stretch, but since I can not prepare food, I cannot be fully alone
- I CAN almost GET THINGS OUT OF A CUPBOARD: my brain sees a fourth wall in a cupboard and it becomes very messy getting something out, but as my neurosurgeon said, “God help who is with you, but break all the dishes and relearn how to do it.”
- I CAN THROW AND CATCH WITH BOTH HANDS: now being ambidextrous, I am discovering all sorts of things both hands can do (chopsticks, using scissors, using cutlery, drawing, writing, throwing, catching)
I will continue to log my wins and continue to fight forward. Even when the sky seems way too dark to keep going. I will.
Thank you for being right there with me.
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