364 days

IMG_5207I have been sick for 364 days.  Today, in the late afternoon in a tiny office, my doctor said she is astounded by my condition.  The level of Epstein-Barr Virus in my blood has climbed back up, so I now no longer fit the diagnosis for Chronic Fatigue Syndrome.  I am so confused!  And to what extent does it matter what we call this?  It’s the same inexplicable condition with the same treatment plan of symptomatic relief (aka pain pills, sleeping pills, muscle relaxers, anti-depressants, gross,GROSS, G-R-O-S-S).  In her words, I have sustained an active Epstein-Barr Virus for a year now.  She is worried.  There is no explanation for why my immune system cannot fight it off.  No direction for treatment.  My doctor actually appears dumbfounded and ready to pass the baton to someone else.

It’s okay, really.  I don’t expect answers.  I am well aware that there are tremendous things (good & bad) that happen in our bodies that medicine and science have no inkling of understanding towards.  I have no doubt that I am receiving the best medical care available here and have no frustration with any of the doctors I have seen over the course of my illness.  I know that they know the truth about the limitations of medicine… and I think it makes most of them highly uncomfortable.


If you set your mind to it, you can do it.  But what of the courage it takes to recognize what you can’t do?  To stop fighting for what you want and respect the larger forces at play.  What happens when you look around and realize the cards you’ve been dealt won’t ever ever ever match up to the lofty hand you’ve imagined for yourself?  This takes strength, too.  I hope for a particular sort of grace to accept the twists and turns, catastrophes and strokes of luck, and insurmountable brick walls that can (and will) manifest in life.  Attitude adjustment # 35874850… I want to play my role as if I chose it.

What is keeping me from fully accepting illness, pain, and solitude?  Sometimes I resist acceptance when I think about all of the “normal things” that my peers can do that I can’t.  On this note, I also struggle, occasionally, with what other people might think of me.  I don’t expect anyone to understand my reality, because I wouldn’t have believed this before it happened to me.  I want to be understood and seen for the person I am beyond this physical struggle.  But, truly, I have no energy allotted for convincing others that I am sick (and not lazy, depressed, or attention-seeking).  No energy for proving myself to anybody.  And less and less energy for bitterness or anxiety.


I really believe that I am going to recover, eventually.  Snails probably have no idea that they are considered slow-moving.  Maybe I’m creeping forward and recovering, just at a rate that’s so slow that it is difficult for me to perceive.  What is a year or two or ten in a lifetime, right?

Even if I never reach health, again, I trust that I will find a way to remain happy, dwell in love, and perpetually practice hope.

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