The movie, Brain on Fire (2016), based on the memoir by Susannah Cahalan entitled Brain on Fire: My Month of Madness (2012) ended abruptly. In the movie’s final scenes, Susannah, played by Chloe Moretz, recovers from her ordeal—her “month of madness”—and several months of rehabilitation, and returns to work…The movie ends there, and in all honesty, I felt as if I were left hanging; perhaps, because I knew that this is where the more amazing story began…
For just a moment, imagine three young friends on the school playground having an in-depth conversation about the color purple. One of the adolescents was born blind and the other two are trying to describe what the color looks like to an individual who has never seen a flower, an eggplant, a crayon, or even a sunset. Imagine that of the two friends with sight, one sees the color purple and is reminded of a big silly dinosaur they grew up watching on TV and the other simply recalls the fresh grapes they ate last summer on a relative’s vineyard. Both are picturing the color purple and both are correct, but they have two very different perceptions of what purple appears to be, based on the input of their other senses. How can these friends describe a sensation or feeling to their blind friend? What does purple feel like or taste like?
Living with an autoimmune disease means living with many uncertainties. But there are many things you come to realize in time, that – had you known before – may have provided some small comfort along the way. And, let’s be honest, upon initial diagnosis when the whole world seems to have shifted and the life you had planned has been forever changed, we’ll take all the comfort we can get.
We, as humans, have contemplated, deliberated and sought to understand the concept of time, since, well… the beginning of time. The inevitability of its passing and the ensuing impact of its very existence on human lives has been a source of constant wonder in our ever-increasingly hectic lives. Each and every moment seems to be dictated (directly or indirectly) by the omnipresent ticking away of seconds, minutes, and hours.
My body is marked from head to toe with physical evidence of my various medical battles. First and foremost, there is proof of the gift of life bestowed upon me by my mother nine years ago, an approximately 3-inch-long scar that runs along my lower abdomen. Then there are smaller scars on my neck and upper chest, where various tubes have been inserted, connecting my body to machines for life-saving dialysis and plasmapheresis treatments. My arms host a few more, even smaller, nicks accumulated from bad needle pokes, the dreaded arterial blood gas (ABG) draws, and even one or two resulting from an encephalitis fit where I yanked out my own IV. Just below the surface, the veins in my arms are so scarred that these days my blood draws often must be extracted from other, more sensitive areas such as my hands or even feet. And, more often than not, bruises and small scrapes of unknown origin can be found along my legs and arms, a result of chronic anemia and post-encephalitis balance stability challenges.
Even before I went autoimmune-crazy, I was boy-crazy. Because of that affliction, I have inevitably gone through a fair amount of breakups. There is little in this world more heartbreaking than detaching yourself from someone you loved enough to build your life around. In the most severe cases, going through a breakup can often be as painful and dramatic as the death of a dear friend or family member. These devastating losses can inflict a range of emotions so intense that emotional pain becomes physical. And in breakups and death alike, you often go through a complex process of grieving.
Whenever I need to be reminded that there is still good in this wild and senseless world, I simply think of my mom. As children, we put our mothers on these superhero pedestals. They can do no wrong. They kiss our boo-boos, wipe our noses and tuck us in at night. For a time our world revolves around them – and rightly so – our mothers have known and loved us since before the rest of the world ever even knew our names or saw our faces.
The mind is a curious and wondrous machine. So many things about the brain are unknown and surely the vastness of its functions and failures are put on full display while under the influence of anti-NMDA. The various ways my brain responded to this attack, processed information under duress, and ultimately healed, continues to amaze me everyday.
There are people who seem to seek out Death. We call them thrill-seekers and adrenaline junkies. They jump from planes, drive incredibly fast, or partake in extreme sports. Some of them fight fires or go to war and some of them resort to drug use or crime sprees. No matter the outlet, they all seek the same adrenaline rush that comes of blatantly tempting fate through intense life experiences. They seem to thrive on the thrill of chasing down Death, tapping him on the shoulder, and jumping just out of reach.
I just need to focus. I am willing myself to focus.
I have just “woken up” to find myself sitting on the bathroom floor in the one-bedroom apartment I rent. Although, truthfully, I haven’t actually been sleeping per se. Just…unaware. I struggle to recall what day it is or even what time it is. Should I be sleeping? Getting ready for work? Why am I on the bathroom floor? How long have I been here – I mean… minutes…hours? I slump against the wall next to me, the cool, rough texture grazes my cheek and for a moment, it’s the only thing holding me up as the room tilts around me. I’m shaking, confused, dizzy and wondering what in the world is wrong with me.