The following is an account from longtime OFM writer, friend, and family member Arianna Balderrama. It has been edited minimally to preserve her voice as she embarks on a journey of physical and mental healing.
I remember the days setting early with a cold breeze greeting me to the darkness of the premature evening. I worked my usual day at the office and anticipated the return of the spring school semester. I was eager to take the classes I selected but more so to be a step closer at attaining my degree.
In celebration of a steady winter, my friends and I got dinner together before the following months consumed us with work and school. I remember looking outside of myself, as if I was watching our forks clash and drinks drip from behind the table. I directed it to my exhaustion or worry about what tomorrow will soon hold.
I drove home, but my fatigue would not take me. I leaned against my headrest and did what I am best at: I wrote.
My mind spiraled and fixated on scribbling words on the lined pages of my journal. What I wrote was a wander of my thoughts in this moment. I scratched a ramble of nonsense, but it was a thrill.
I hadn’t slept all night.
I got ready for school.
I made it to class.
I enjoyed it.
I drove to work.
On my way to work I realized my state of mind had been warped to incomprehensible. I pulled over and called my friend who took me home.
I’ve lost my memory from this point on. While piecing this together from the account of my family, it is as if I am recounting the life of a stranger I’d interviewed from my prior writing career.
My mother saw me ill and erratic and took me to the emergency room. Laying in the hospital bed, I would go on about needing to get back to school and needing to finish my Minecraft build (how pathetic). I would point to the hospital ceiling and ask my sister, who stood by through this episode, what was going on. Bri stated she would explain to me minutes after minutes the same facts: I was in the hospital; I was going to feel better soon, and I was getting help.
My condition was determined to be psychiatric because of my erratic behavior at the emergency room. It made sense.
I was held at a facility in Colorado Springs for less than 24 hours from a designated 72-hour hold. My sister stated that between thick glass I begged her to open the door and let me out. Somehow even then I understood my condition to not be a mental health crisis.
I don’t remember a thing about my night at the mental health facility. I know my health deteriorated rapidly there. I was sent to the emergency room once more. My sister described my condition as “being dumped like a dog.” My hair was disheveled, and the medical team from the prior facility did not stay to inform the hospital staff about my present condition. My sister took on the burden to face the crowd and aid me, as I had been rendered insane and incompetent by this point.
Eventually, I was sedated because I had not slept in a couple days, and the swelling in my brain had been substantial. I underwent an extensive amount of testing to figure out what was truly wrong with me. It wasn’t until spinal fluid was extracted and examined that it was determined that I had Anti-NMDA Receptor Encephalitis. I had a tumor in my ovary. While my body tried to attack the tumor, it instead attacked my brain as well. This led to my behavior being erratic, my sleep deteriorating, and later my condition debilitating.
I was forced into a coma to let my brain heal. I had a catheter, a feeding tube, and a breathing tube. I wish I could recall my time in this dream state. Did I travel through time? Did I meet God and is he really a white guy with blue eyes and abs? Did I live a new life in my head? To me these moments are just black.
My family grieved me, but my chest still rose and fell. I wasn’t present for six months. For half a year, I was in this paralyzing state. My sister took time off of work to stay with me during the day, and my father would come straight from work to stay with me at night. Not a moment was I left alone. My sister would do my hair in braids and buns. My father would tell me about my mother at home and show me pictures of my dogs.
Simply, I am grateful.
When I awoke, I couldn’t speak, move, or see. I couldn’t distinguish the contrast, for all I saw was black. I couldn’t communicate this to my family. I remember my father wanting to show me picture of the time I had lost with them, and all I could see was a bright white light illuminating inches from my face.
I relearned how to walk and speak again. My father has a video of me taking my first steps once more. He’s cheering me on.
I’ve been home a few months since my half-year-long hospitalization. I remember coming home and realizing my sight had been greatly impacted. From black, I began to soon see more contrast. I could make out the figures of my family and make my way around the house while guiding myself with the wall. I would cry at this new normal. I lost my sight temporarily, but I can see this darkness now.
I have regained some of my vision, though it’s still spotty. My memory has been improving, though I cannot manage anything right now aside from binging television shows and doing crafts very poorly.
Before my illness, I was in school and I had a job I enjoyed. It’s hard to cope with losing so many aspects of myself. I would cry for hours, hugging myself, running my fingers through my hair in desperation of something better. My creativity spilled out of me, and now I work myself to headaches. I wonder about the life I would have had now. And I yearn for it still through sleepless, teary nights, despite higher doses of Trazodone and a cocktail more.
The light I face through all this lies with the care and patience my loved ones have met me with. It’s in the little tasks I’m growing to complete more independently such as reading, painting, and cooking. I can recount more of my day with little aid now. I can see a person’s two eyes now rather than just a blur of figures and colors meshed together.
I cannot say the worst is over because my hell comes every day this new reality settles into my skin again. All I know with certainty is that I will progress and adapt to my new limitations.
