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!
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.
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.
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.
The sound echoed in the nearly empty waiting room when my name was finally called and I rose slowly to my feet and made my way to the waiting nurse. I was taken to a small triage room just beyond the open door where my vitals were taken and I was shocked to see my blood pressure register so high. I chalked it up to anxiety and began to try to explain how I felt. My symptoms had gone from a minor stomach ache and feeling worn out to extreme nausea, short term fevers, and body aches. The symptoms resembled the flu, so I wasn’t really concerned, but they had lasted for more than 3 weeks and I was sick and tired of feeling sick and tired. I had been to the doctor a couple of times in the last couple weeks, but I didn’t seem to be getting any better.
I suppose there is no better place to start than the very beginning, with my first trip to the emergency room, at the onset of my first auto-immune disease. This is an excerpt of what I recall from that day, a lifetime ago.
It should have been raining.
In the movies, whenever “the plot thickens,” it rains (cue dramatic music – bump, bum, bahhh). The characters are mad or sad or afraid and the storm brings about a change in the mood of the movie. Blurred images of rain drops are slowly sliding down the windowpane, nature’s tears reflecting the internal emotions of the character.