in between: a follow up

Before I went into the hospital last week, I had this awful feeling that this long awaited stay would end up in another team of doctors saying, “I can’t help you.” At that moment, exiting another hospital with no clear answer was my biggest fear. I felt a similar sort of stress to the one that consumed me at the beginning of my mast cell onset, the sort of stress that only hyperawareness of listlessness could trigger. I knew there was something else wrong with me and I knew that nobody could figure out what. This lead to me start blaming myself in a myriad of ways, just like plenty of doctors had. Feeling that way again shocked me into silence. This time around, however, I did not make that same mistake.

I got my hopes up a little too high for this medical practice; that is the first error in my logic that I’d like to address. The type of illness I live with is so often overlooked. So, I overcompensated. It’s easy in the face of uncertainty to grow desperate for answers. Questions vs. answers seems to have become a rather noticeable motif in my life. It feels sometimes as if I was born craving for unspoken truths to be shouted. For so many years, I’ve searched in every place I possibly could for answers. Last year, though, I stumbled upon a Rilke quote that drastically changed my perspective: "don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer."

Prior to this hospitalization, I said to myself, “I will never stop searching for answers.” It didn’t ever dawn on me that, possibly, the only answer I’ll find right now is that I have to wait for one. The times spent in between have always been the moments I ended up treasuring the most: the hours between nightfall and daybreak, the minutes between first waking and the alarm going off, the seconds between an exchanged glance and a smile… Those are my favorite places, and it seems like God is guiding me to them with the intent of keeping me there awhile. After all this time, I’m realizing that the spots I tried so hard to escape from were the home I didn’t know I needed. The intention should not be to "undo" my illness, rather than to try to make living with all these unanswerable questions as comfortable as possible. That's how living with chronic illness is, and I'm alright with that now.

At the hospital, a very ignorant doctor said to me, “if you see yourself as sick, you’ll be sick.” As someone who has struggled to accept the fact that they’re ill, I don’t understand this statement. I simply cannot wrap my head around it. Ignoring the intense nature of my situation wrecked my mental state. What he said is something only a coward could bear to say. Processing that over the course of the past few weeks has changed the way I look at myself, but not in the way he suggested. I feel confident, like a rebel with a cause. I am sick; so sick, in fact, that few doctors have the patience or the guts to try to help improve my quality of life. But, you know what? I love myself anyways, to the moon and back again. To all the doctors who were too lazy to dig deeper; I’m surviving without you.

#hospital #ableism #gaslighting #medicalmalpractice #trauma