Being in this stage of illness is so strange. There are a lot of adjectives that go along with it. This stage of illness is sad, and maddening, and overwhelming- but most of the time for me, it is just slow, and strange. I know that I have moved very quickly from "severe lung disease" to "end-stage lung disease."Every article I read about my symptoms is about "end-stage" lung diseases. I wait for a transplant because without one I will not live. On the one hand, I logically understand that. But it wasn't until this month in the hospital that I got any experience with this word, "dieing" as it pertained to me and the body I live in now.
What I know now about my point of view the weekend prior to going into the hospital is that I was already extremely hypoxic. So in addition to the lapses of logic that come along with feeling extremely ill, and not being able to breathe, my thoughts were actually altered. I remember sitting around my house in my pajams the entire time, and sleeping a lot, which must have worsened my hypoxia. Looking back, my mother says that I was already being sort of out of character over the phone. By Sunday, I was practicing active cycle breathing to keep my oxygen saturation around 92 on 5L of oxygen, and I knew Dr. U-bird was going to put me in the hospital.
This is where my memories start to get all messed up. Much of the rest of the week doesn't matter in relation to the point I want to make tonight - but I will say this -a lot of bad things happened that first week in the hospital and mostly because I was not my usual diligent self, overlooking my own care because I was all crazy hypoxic. Also, my own doctor was out of town, which bred a series of medical personnel self-righteous indulgences that I will write about at greater length some future day. So, yadda yadda yadda, a bunch of shit went down and I was just getting sicker.
[Sidenote to CFer readers: only on CF blog can you "yadda yadda yadda some scary medical stuff went down" in order to get to your point. I am reminded of that episode of Seinfeld, "You yadda yadda'd the sex?" "I yadda yadda'd the sex." I have, above, yadda yadda'd what is usually the most interesting part of the typical hospital story.]
A lot of bad things happened and by the end of the week, I was laying fetal in my hospital bed, which was propped up almost to sitting, and trying desperately to breathe: in . . . 1 . . . out . . . 1 . . . in . . . 2 . . . out . . . 2, until I reached 100. Then I would start again. I stayed up all night this way, counting my breath and occasionally stopping to see if my oxygen would stay stable. It didn't. I don't know, with the chain of events, if I had already seen a doctor, or I was afraid to call for the doctor, if I had tried the BiPap, or not. I only remember laying in the bed, counting my breaths, forcing them in and out.
This was when I realized, this is part of dieing. This is what it feels like. Before, I was ill. And now, I am dieing.
Around four in the morning, I started sending texts that said, "I really need someone here now. Someone should come here now," and some others that I don't really remember. I texted them to my parents who were planning to arrive only 4 days later as it was. I didn't want to be alone for four more days. All of a sudden.
At some point in the night, I was laying, counting my breaths on my fingers and trying to read with the book laying next to me. I was re-reading a book I have referenced here before called, "Sick Girl Speaks!" by Tiffany Christensen. On her list, "Top Ten Opportunities of Illness," she writes, "9. Going to an internal place that is so deep pain cannot find you there." In my state, I found this phrase very meaningful, and I decided to meditate on it instead of counting my breaths. I started to breathe to, "(Inhale) Take me to a place inside (Exhale) Where pain can never find me."
I wanted to find a place so deep and quiet inside myself that my tired lungs and breathing muscles could continue to do my breathing, while my mind and the rest of my exhausted body could get some rest. I started to also think about everything that lies ahead of me, not even knowing of the immediate threat of respiratory failure.
I wanted to find a place inside where pain would never find me. By the morning, I found it.