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only small things

top baby pine

I don’t have much to offer today beyond an update on my medical saga.  I have now been sick for 1 year, 3 months, and 3 weeks.  It’s funny how time operates- the more time I spend in illness the less terrified I am of more time passing this way.  I used to think I can’t imagine another week like this, but now a week is a blink and a month is a snap and a year is… well, actually, a year is still a bit daunting.  It has occurred to my family and to me that my condition may be worsening in the last months, instead of staying stable.  I know it in the intricacies of my body, but the changes may be caused by an accumulation of time spent in pain and inactivity rather than an acceleration of the virus.  It feels like a slow breakdown is happening, regardless.  I think of little flurries of snow piling high along a wooden fence.  A white shelf.  It’s November and my mind is in the Midwest, I guess.

My case has been sent to a doctor at the National Institute of Health in Bethesda, Maryland, and we are waiting to hear back from him about when and if he can accept me as his patient.  This doctor specializes in chronic Epstein-Barr Virus and has a lab that is doing research in this field (one of the only places where this is happening).  I really hope that I will get to see him.  Also, a specialist in immunology has been running blood tests on my immune system, in hopes of articulating its dysfunction.  Perhaps the combination of this information with the knowledge of the doctor at the NIH will lead to a treatment plan.  I am very hopeful that this will happen, but I know that mystery abounds in the medical world, and there are plenty of lives permanently ransacked by physical illness.  I am just grateful that I have access to medical care and a supportive family.  I try to remember that I am coming at all of this struggle from a place of privilege.

In the meantime, my days have been passing in basic peacefulness.  Cooler air has arrived and it billows through the apartment at all hours, encouraging the feeling of change, like we must be on the brink of something big.  There’s no race for the finish, though, just a hopeful stillness.  Tomorrow I will try a different approach to pain management, using a fentanyl patch.  I am apprehensive but willing to see what it’s like.  With severe chronic pain it often seems like a choice between insane discomfort and doped-up dysfunction.  I guess the idea is finding the balance and accepting that feeling systematically healthy is off the table at this time.  I can’t imagine being well again, but I know that I felt fully well for twenty-five and a half blessed years.  So bizarre.

I decided doing graduate work online was unrealistic, so I let that idea go.  I want to pursue this opportunity but I am too sick.  This illness is physical and also psychological.  I have said from the onset that it feels remarkably neurological; there are days when my brain is so foggy and twisted that I can barely stumble through the normal daily activities without harm.  Have you ever had the kind of over-the-top-hangover that just can’t be shaken?  The kind you have to call off work for and still feel wrecked from by nightfall?  This mental confusion is sort of like that.  Also, on many days, any time looking at a computer screen instigates severe headaches that can go on for hours.  So adding twenty-five hours a week of brainwork would be absurd and probably disastrous.

I used to think about how western cultures dismiss the connection between body and mind, and how the two are so intimately related that they may as well be inseparable.  I practiced yoga, jogged, and reaped a lot of pleasure from my body back then.  These days, I am glad that my body and mind do not behave as one.  I am grateful for my mind’s departures.  For the luxury of imagination.  For the transcendence offered by other people and by all of our various forms of expression, including written words, music, and visual art.  I asked my parents a few weeks ago what I was like as a baby.  They both told me I had these gigantic, gaping eyes, that responded to the world more actively than most infants.  I feel this way, truly, like I am super-stimulated just by looking at things, even the same things over and over.  Like baring witness to the world is enough, like being wide-eyed and still is built into my personality.

I’d like to find avenues to be something positive to someone else.  It’s complicated by my physical limitations, but I know there are ways.  If there is something I can do for you, whether you are in my physical world or not, please ask.   You can send me an e-mail or a message through this blog.

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