I have an ongoing love-hate relationship with sleep. I used to have a t-shirt that read “I’ll sleep when I’m dead.” That was, of course, back when my daily stamina seemed limitless and I couldn’t stand the thought of missing out on a single moment (a chaotic and, fortunately brief, side effect of young adulthood, to be sure). But I have always loved to sleep- and frankly, I was good at it!
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.
In December of 2013, several media outlets had put together their usual round up of that year’s hot topics, trends, and newsworthy items. While others watched with amusement or recollection and even dismissal at things they’d already seen one too many times as they had unfolded in real time throughout the year, I sat enthralled, soaking it all in for the first time. For me it was like watching a documentary on the history channel – occurrences based on truth in another time and place where I couldn’t quite envision myself.
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.
Growing up in my family, little kids were welcomed to play board games with the adults, but they could expect no quarter from anyone at the table. Anybody of any age could sit up and play, but nobody was going to throw the game just because an opponent happened to be young, old or infirm. It was cutthroat for sure.
“Did you really do that?” (Replace that with any number of aggressive actions that range from throwing trays of food at the wall, running down hospital corridors trying to escape or mimicking every conversation in the room.) These are the questions I get asked most often from those who have watched the Discovery Channel documentary episode about my battle with anti-NMDA.
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.