Raw

Summer packed up quickly. Humidity and too hot days were gone in an instant.  The days are short now, the last waves of golden autumn sun just barely shadows when I get home from work.  It was below freezing as I walked to work yesterday morning. Two nights ago, when I stepped outside, it smelled like snow.

I blinked and suddenly the ground was covered in dry leaves, the chorus of fall sung in deep musical gusts.  It really seems like just a moment ago I was eager for summer to end and now it has been gone for weeks.

This year’s autumn has been fraught with emotions.  I am having some big feelings these days and they are leeching from my other reservoirs: patience, kindness, love.   But mostly patience.  Loss of patience is where it shows the most.

We were so scared that Seth would die, and he didn’t but we still don’t really know how to feed him.  I read papers by the hundreds, make notes, send emails.  He is better but not good.  We still don’t have a good plan.  What happened with Seth felt immediate, traumatic. Like the pain of landing hard after falling, hands and knees stinging, blood seeping through the wounds.  Startling, alarming but survivable.

Then I picked up my phone and read a text telling me that my friend was having a bad reaction in an emergency room.  I relive that night constantly.  The back and forth, my let’s not panic attitude when we should have been panicking.  I am too used to this, I have seen us all be fine after so many panic-worthy episodes.  I am too used to us all being fine.  But we should have been panicking.  And by the time we understood what was happening, she had already had a stroke in her brainstem.

It feels so slow in my memory, like a parchment map being slowly unrolled.  By the time we knew where we were, it was too late.  There is this heavy sorrow inside of my heart that makes it hard to breathe.  We didn’t even know where we were and now she is locked inside of her body. It is suddenly the end of October and the sorrow doesn’t feel lighter. I am just learning to carry the weight.

Everything is a fight sometimes.  Every. Thing.  Insurance companies, doctors’ offices, hospitals and pharmacies all call to inform me about the ways in which bureaucracy and the broken American health care system is messing up my care again.  Not in a way that will kill me, just in a way that requires a patience I no longer have.  My eye has started twitching again when I have to explain something about my healthcare again to someone who has already heard it and was previously unmoved.

Someone called me today to say that they could waive part of my bill. I had a panic attack in a grocery store, because even receiving good news about my healthcare is too stressful right now.

I was medically cleared to fly to China by all relevant medical professionals but had to undergo a medical clearance by the airline since I needed to use an infusion pump during flight.  I filled out forms, provided notarized letters.  In their infinite wisdom, the airline decided it wasn’t safe for me to fly alone.

I paid a visit to my PCP’s office after having a mid-level nervous breakdown on the phone with a nurse about the fact that the airline may not let me go to China. I apologized for getting so upset.  While she wrote another letter for me, I told her that mast cell patients get labelled as psych patients a lot because we look fine until we are in liver failure or having a stroke. I told her about my friend.

She called the pharmacist working downstairs and he came up to notarize her letter.  After some back and forth, the airline relented and agreed I can fly with my pump.

My skin is burning this week. I am flushed a deep pink all over.  I realized today that I am reacting to my ketotifen after eighteen months of taking it every day without an issue.  More phone calls with my fingers pressing on my eyelid in a vain attempt to stop the twitching, heat creeping up the back of my neck.

Last week, some guy kept obstructing my path down the sidewalk in an attempt to make me donate to some charity.  When I finally maneuvered around him successfully, he made a snide comment.  I turned around and yelled at him.  Because get the fuck out of my way.

I am grieving and angry and impatient and raw and exposed.  In two weeks I will be in Hong Kong and it feels wrong that I am stable enough to travel to Asia, a sort of betrayal and survival’s guilt.