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.

And so, it should have been raining that day, and yet the springtime air was clear, the sun shining brightly with not a single cloud in the sky as we made our way to the emergency room. The tangled mid-afternoon traffic of the city wove in and around us like a complicated dance. I was quietly gazing out the window of the passenger side of the truck. I thought of how all the cars lined up together at each stoplight as if we were all headed in the same direction; however, ultimately each of us was headed down our own individual path, possibly veering right when the car ahead of us turned left, some stopping along the way, others speeding through to their final destination. So many of us drive through our lives focused only on where we’ll end up, as if following a map, the course already plotted, as if we didn’t have a choice or an alternate route.

Looking back now, I wish I had paid more attention; I wish I had soaked in all the details of my current life so as hold them with me, like a security blanket, saved in a box somewhere for the day when I might need some extra comfort, a safety net to catch my fall when the world turned upside down. I wish I knew the turn my life was about to take, so that I could have at least taken notice of my journey and not been so intent on the destination. But there’s no way to know, you just never know how soon you’ll need to pull out that security blanket and cling for dear life.

It all seemed so surreal, almost like an out of body experience. I just didn’t feel “like myself.” I couldn’t label the changes that seemed to be overtaking my body wave by wave. I just kept reiterating that I knew my body and I knew something wasn’t right.

I thought back upon the previous weeks and tried to recall the last time I felt normal. One of the very oddest sensations is not being able to remember the last time you truly felt like yourself, and yet, you’re aware that you’ve been existing as your so-called normal self on a daily basis to those around you.

Finally, we spotted the large red emergency sign, glowing like a beacon, and pointing us in the “right” direction. Some instinctual part of me suddenly wanted to reach across the truck cab and grab the wheel and turn us in the opposite direction, away from what might come, away from a hospital that might tell me what the depths of my mind had already started to contemplate. But I knew that I could never run far enough or fast enough to escape myself. So, instead, I merely held my hands in my lap and looked over at my boyfriend behind the wheel. I wondered how he was doing; I knew he wasn’t a fan of hospitals, to say the least, but on the surface he seemed to be holding it together for the moment.

As we got out of the truck and ventured through the parking lot, I wanted to reassure him, even as I wondered myself what would happen next. I grabbed his hand and together we walked through the automatic doors that enveloped us in a rush of cool air and the sterile “Band-Aid mixed with hand-sanitizer-smell” that always seems to be synonymous with hospitals.

I had never been a big fan of hospitals myself, even though my mother worked in one and I had briefly attended nursing school in my college days. I suppose hospitals reminded me of my weaknesses, of immortality. Sickness and disease were like the monster under the bed for me, something that could be avoided if you didn’t see it…or better yet, it didn’t see you. Maybe that was why I hadn’t given in and gone to the hospital earlier.

The emergency room didn’t appear to be very busy when we walked in and registered at the front desk, although, truth be told, we would wait for at least two more hours to actually be seen by any sort of medical professional. My first important hospital lesson: “emergency” is a relative term.

In the meantime, I tried to get comfortable in the waiting room, growing increasingly agitated every time a nurse came out and my name wasn’t called. I began to feel worse with every passing minute and couldn’t seem to get comfortable. I tried to stretch out on the waiting room chairs, which must have been made from the remnants of some medieval torture device in a previous life. As I fidgeted around uncomfortably, I endured random episodes of chills and nausea, eventually crying out in frustration, impatience and the unknown. I was exhausted and scared.

Only hours ago, I had decided that my symptoms weren’t improving and rather than waste my time with another doctor visit, I may need to take a trip to the emergency room for a more rapid solution. I had recently left my job and my insurance was supposed to run out that day so I wanted to get a second opinion while I still could. That almost off-hand decision became one of the most crucial I would make at the time and wouldn’t be the last close-call I encountered.

I had never been seriously ill, never been hospitalized or had surgery or stitches, I had never even had a cavity! And I was only 25 years old.