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.
I’ve always been able to escape through music. music. No matter what I was struggling with, I could always find a song to help me cope or relate. I firmly believe that music has saved me from myself on more than one occasion. And even as I found myself drowning in the sea of encephalitis, I relied on the sweet escape of melody and lyrics to bring me through. I fell asleep listening to it, found comfort in it and even used it to communicate when my own words failed me
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.
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.
“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.