The Learning Winter

This has been a hard winter.  It hasn’t been a long winter, time has been passing as it usually does, somehow getting faster with every birthday.  But it has been hard.  I am trying to reframe this in my mind as a Learning Winter, but honestly, some of the things I’ve learned? I could’ve done without.

Most of January was taken up with preparing for my back surgery, having my back surgery, and recovering from my back surgery.  The surgery went well – initially.  They sent me home (well, to my mother’s) on opioids that afternoon, after learning that I come out of anesthesia very violently. (This is apparently a common thing among autistic people. Who knew? More people should know this.) Very early the next morning, I learned I was non-reactive to opioids, and was in so much pain I could not move at all.

In the aftermath of my surgery, I learned that EMTs are really, really nice, even when you need to call them twice within a twenty-four hour period.  I learned – very, very, very important – that I am either non-reactive or allergic to most opioids, or at least, the four they tried on me.  I learned that ERs and hospitals in general are absolutely awful, hellish places for people, but for autistic people in particular.  After my mom finally went home six hours into ER visit number 2 and it was clear I was being admitted, I learned that it is perfectly possible to be lying in an ER room and not get any help for hours.  Also, that if you can move, the nurses will think your pain is better.  (It isn’t, I just really, really, really had to pee and nobody answered when I called for help repeatedly.)

I learned that I need to get that drug interaction into my chart ASAP because when you have a 103 degree fever and are hallucinating that you are on a boat people will not take you seriously when you say, “you know I think I’m allergic to that? It gave me this rash, earlier?”

I learned that there was absolutely no boat ride involved in my hospital stay, but I still hate boats.  (I hated boats before, though.  I knew that.)

I learned that if you can physically show signs of distress, by crying or contorting your face, people will take your pain more seriously.

I learned that I can survive enormous amounts of pain, and that the sooner you can leave the hospital, the better.  Also quite a lot about self-advocacy and care plans and how hospitals work, both little details like food and big details like I’m allergic to this thing, what do you do. I’m trying to impart this knowledge to medical professionals now through various measures, and in the meantime, life goes on, winter goes on, I keep learning.

We had a snowstorm.  It was cold.  I learned not to trust the guy down the street to jump your car for $20 because he might cross the wires and cause over $200 in damage to the steering controls.

I’ve been going to church, even though we have an interim minister I am not too fond of.  And I am learning that churches just don’t function so well under interim ministers.  I am learning to wait for the new minister.  This is a true lesson in patience. With interim ministers, things don’t get done.  Issues aren’t resolved.  Things happen, and I know for a fact that they won’t get dealt with, and there is nothing I can do about it. 

I was sitting in a meeting after church, trying to learn about an important social and political issue.  There were perhaps twenty or twenty five people listening to a speaker, most of whom I knew, many of whom I’ve known for years.  The speaker was very academic and spoke very fast.  I was trying my hardest to follow, and to keep my body still despite the flickering lightbulb above and the uncomfortable chair and I was eighteen days out from my back surgery. I guess two or three questions/comments weren’t acceptable to Kathy, (sitting next to me) because she stuck her arm out, across my chest, in the universal ‘shut up’ gesture and said, ‘shhhhhh!’

Like I was a baby.  Or an errant three year old.  Or a dog.  Shhhhhh.

I lasted maybe another minute or two before I fled and melted in a corridor and I learned, yet again, that PTSD fucking sucks. Because here’s the thing about PTSD: when Kathy ‘shhhhh’d’ me, my brain was in first and second and third grade, having so much to say but having the words come out all wrong.  My body was transported back to a summer camp I attended at thirteen, and hearing someone say, ‘I wish someone would tape Ekie’s mouth shut’.  I was once again the only college freshman actually excited to learn about something and eager to have political discussions in intro to poli sci.  I was sitting in the office of a faculty member at my fellowship last year, hearing her ask me, ‘Could you maybe try counting to thirty before you say anything’.

I learned that as I deal with trauma in my body, my mind is more susceptible to outside trauma.  I learned that when I am having a meltdown I am in absolutely no position to deal with an apology from the person who caused it. The only thing I can do after a meltdown is collapse while all of my past selves come slowly back from green college campuses and stuffy boardrooms and classrooms with cork-board walls, to coalesce into the functioning adult I spend my days pretending that I am.

I learned that I may qualify for a type of government benefit, but due to my learning disabilities I have a very hard time filling out the form. I spent a full hour on hold with the agency until they asked me did I want to take a survey about how satisfied I was with the service I received.  I never received any service. I called back later. I spent another full hour on hold before a computer informs me that the line is too long and I should call back…..later.  I tried calling again, and learned that sometimes if you transpose two numbers of a government phone number you end up on a phone sex line.

All I need is help filling out one form. 

It isn’t fair.

It shouldn’t be this hard.

But I am learning that it is, and it always will be.

And if it is this hard for me, a relatively privileged cis white woman raised upper-middle-class, how much harder is it for people who do not have my privileges?  I did not fear calling the EMTs, even though they were accompanied by police officers.  I had the safety net of my state and federal Medicaid to pay for the operation and all the medications.  I had a relative’s home I could recuperate at.  I have resources to access more healthcare as I continue to deal with the never-ending, energy-sucking, soul-sapping pain.

I acknowledge all these privileges, and I acknowledge that due to my sensory and health issues, I have not gone to a single rally or protest and it is quite likely I never will.  Because even as I deal with my own small issues, at large, the country is in a constant state of implosion.  I honestly have no idea if the United States will even exist as we know it a year from now, or if it will further descend into fascism and anarchy, with the top-level government filled with people who don’t ‘believe’ in such basic facts as global warming, vaccines, or, you know, human rights.

I know so many amazing, kind, beautiful kids who are so full of potential it bursts out of them, and I am growing more convinced by the day that many of them will not live to grow up, or that the world they inhabit will be so drastically different from mine that it will be unrecognizable.  This planet is all we humans have got, and we humans are making it uninhabitable for life.  All life, not just ours.

I am learning to live with this fear and anxiety.  I am learning to take it day by day just as I always have.  I am learning – I continue to learn – to set boundaries, to know and listen to my own body, to seek out people who get it, to do what I can, where I can, when I can.  And if that means that social and political activism needs to take a back seat for a while so I can deal with my body, then I must learn to accept that as well.

It is all I can do.

It is all anyone can do.

We can only keep learning.


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