CN: Unedited stream of consciousness.
Tonight was the first time that I was autistic in a way that people actually noticed and felt nervous as a result of. Because of a confluence of events, while I was able to understand things, producing full sentences was outside what I had the spoons to do. It was like talking made me feel like I do during sensory overload.
I basically had to resort to almost like internet speak where one word is used to represent entire concepts. (an example of this could be “feels”)
It was almost like… aphasia but not. Non verbal but not.
IT’s actually the thing that scared my roommate and the paramedic. Because I am usually a fairly well spoken, articulate person, who can be very clear and well I’m a writer.
I couldn’t pass for NT. I couldn’t play politics and play the game. It was like in one moment I was stripped of the main source of all the advantages that have been afforded to me by various privileges that make it possible to navigate the system.
In the moment, I had to desperately create new scripts using what was around me. Like trying to magyver enough privilege to survive.
My anxiety had somehow managed to seize on the impossibility of ruling out the possibility that I was having a heart attack.
I knew exactly why I was feeling the way I was. I knew I had been triggered by multiple things in a short period of time. My physical symptoms were not unexpected from what was going on.
However… I was also in exactly the kind of scenario in which a heart attack was actually most likely. It’s a possible side effect of multiple things happening in my life right now, including not completely unheard of drug interactions, possible side effects of chronic conditions, etc. etc. etc. Not only that but I have a big family history of heart issues and so while my heart has always been pretty solid, it is still an area of at least mild concern.
Add to that that I lost a lot of weight recently, have sleep apnea and haven’t been using my machine, etc. etc. etc.
Like… heart attack was actually not outside the real pf possibility.
Also new weed strain that may also be one that disagrees with me.
I needed to get an EKG, but I didn’t have the energy to take myself to the hospital. The longer I needed to wait to get the EKG, the longer I would be in a extremely heightened state of anxiety which also meant that the more I was pushing myself into a crohn’s flare which would result in me being hospitalized again soon, something which would result in me losing so much money, energy, and so on, that it would put me in a really bad situation.
I could barely speak.
I asked my roommate to call for an ambulance for me. Using one word clues as to things he had to tell the 911 operator to get what I needed.
BTW MASSIVE PROPS TO GREG for picking up like 75% of what I meant.
He basically has a freaking out me yelling out! Prednisone! Admission! Crohn’s! Dilaudid! And actually manage to translate those words into what they needed to know to know why I was actually not unreasonable to be scared that I WAS having a heart attack.
He then managed to help me gather what I needed to give the information to the paramedics. My wallet, my pill bottles, a change of underwear just in case.
The paramedics who showed up were quick to respond to the situation. They ascertained that my current verbal state was not normal for me. They deduced that I was using trigger word cues to provide information. At first Greg acted as translator. He provided the longer form of the information represented by my one words. The result was basically giving that first paramedic a sort of key code to what I was saying.
Once he established that he could get the information he needed from me, he got me up on the stretcher and into the ambulance. Continuing to talk to me like I was a regular patient and getting the information from me slowly.
Thank fuck he was a young enough guy that he was probably familiar enough with memes to also have enough of that lexicon.
Through groups of one word statements. I was able to communicate that:
I had several chronic illnesses that made it possible that I was having an adverse medical reaction causing a cardiac event.
That most likely it was just anxiety but that I needed to be able to rule it out because I could be wrong.
That I was an undiagnosed autistic who did not ever share that information with hospital staff because it can make it harder for me to get the treatment I need for my crohn’s disease.
That I had medical experience and that my primary care givers were aware of this information.
That I needed to be able to leave this situation without compromising my ability to get care in the future.
That as a response to my living with chronic pain for the last decade at least, I had developed coping strategies that looked odd to people until they were explained. Including – using humour to survive meaning that my response to something being very bad being to laugh, not because it isn’t serious but because it had become a way of handling a difficult situation. That chronic pain had changed how my brain works from how normal people’s do – training myself to mostly not be aware of pain at all and so having a difficult time relaxing that instinct enough to be able to give full information. That it was not uncommon for me to notice pain because I’m always in pain.
I was able to say that I felt a 7 in pain and that my daily pain was a me 4 but a normal person 6.
That a history of c-PTSD that was now fairly well managed but that had also been under more stress than usual and so while I was still mostly managing it it was also having an impact on my symptoms and ability to communicate etc. etc.
That I needed him to communicate all this to the nurses in a way that wouldn’t leave me screwed.
That I was able to fully comprehend what was going on and what needed to happen, and that I was also aware of exactly what the situation was and what I needed, and that he could trust me. I communicated that providing them with as much information as possible was not because I was actually worried about any of it but because infodumping was a way to soothe my anxiety. That Additionally giving me the information I was asking for was also a good way to soothe my anxiety because I find information comforting.
That I have a solid background in this information and that it was ok to trust me with it.
I communicated what weird things happening on my stats monitor were in response to and why my reaction and flat affect made sense even though it seemed like it shouldn’t.
Literally all of this information was communicated by:
“I. Undiagnosed. Autistic. Not share. Hospital. Because. Compromise Care. Need. Care. Survive”
“Not heart attack. But Not Impossible. Need Better Safe Sorry.”
I got them to give me my ekg results. They ran the test a few times. They ran my blood sugar. They ran my osats. And they gave me all the results as soon as I asked for them. Giving me all the answers.
Then while he communicated all that information to the nurse, his partner sat with me in the ambulance bay. In the same manner of speech, we managed to have an entire conversation about how the hospital system wasn’t meant for people with chronic illnesses because the problems we were facing were uniquely the result of improved medicine making things come up that usually didn’t get severe enough for people to notice before the patient died of other causes but that needed to be addressed right now because it was already hurting to too many people.
That we needed to name money matter less to people than people do and that we needed to convince people that that was what was needed and that it is not what they already believed. That we needed to reinvent everything because it is not ok to sacrifice individuals on the altar of the greater good but also not sacrifice the greater good for one individual. That the only way to do that was to understand how the spirit of the law, for example is more important than the actual law itself but that we needed to first understand that each situation had a huge multitude of contributing factors that needed to be taken into account and couldn’t be ignored without not actually compromising everything.
That it meant having to recognize that ultimately there is no such thing as an entirely correct answer because we don’t have all the variables collected yet and accounted for or all the information we really need yet, but that we need to start creating a new system that takes these things into account before we do and that means having to listen directly to the people who are living them and actually doing them or going to have to do them, and to stop letting ego dictate who sits at the table.
That we needed to redefine expertise and authority.
That we didn’t have the time left to keep trying to change minds anymore we just had to change things, but that the biggest barrier… was money and self-interest.
I have endless ideas for ways to address massive current oversights in the system. I have plans for hospitals, and cities, and architecture, and I have good reason to believe they would work. Many disabled people do.
But how do I take those ideas and make them a reality when I can’t afford to buy myself bread right now?
I got in to see the triage nurse, and I was taken seriously. I was registered. I also found out that the wait to get into an Urgent Care room was going to be 5 hours minimum.
By this point, I knew I wasn’t having a heart attack. I took the next hour to use the information I had been given by the paramedics to determine a plan of care, and the necessary tests I needed to figure out the way to use the least amount of resources – mine and the hospitals – to get me to a safe place.
It depended on one thing.
Not having to spend the next 5 hours sleepless, surrounded by sick people, making my anxiety worse, but still being able to get the blood test I needed to get done.
Finally I talked to the charge nurse. I told her that I knew what was going on, and how to take care of it but only needed one piece of information that I could get from a blood test.
I could get one faster from my family doctor than the time it would take to see a doctor at Urgent care and get the test done here. I didn’t even need a doctor to see the result to know what it would mean.
So what was my concern?
I didn’t want my chart providing any reason to doubt me or consider me a problematic patient for the next time I would have to come in. I didn’t want to create the impression that I was a trouble patient.
She let me know that because I hadn’t actually gone TO urgent care yet, technically, there was nothing in my chart. That I could be removed from cue, without any of this actually affecting any future visit.
I could go home, and call my family doctor in the morning.
So I’m home now. My EKG shows I wasn’t having a heart attack. I now have a frame of reference telling me this feel equals this specific reason. (aka – vibrating heart feels was result of high blood pressure, but when pressure drop it feels like this. This speed of beat is what this number looks like.)
The trip, the ambulance, all of that was necessary and will make it possible for me to stay safe in the future.
Tonight however, I am overwhelmed by how much of what helped save me tonight is information that I learned about myself not because of doctors. Not because of years of personal research, and academic degree. No. It was information I gained from listening to autistics talk about what autism feels like. From reading blog posts from friends, and strangers, and through funny pinterest memes. How it was years of learning about myself through other people’s stories and using all that information to understand exactly what was happening to me. Enough to be able to communicate all that information at a time when I didn’t have words. I won’t lie, some of the words I used included the few words of ASL I do know. I wished so much tonight that I could use more of it and that so did others.
I am planning on sleeping as soon as I can, but I needed to write this while it was still fresh because I don’t think I could fully communicate all this again and because I know from experience that my brain won’t let me rest until I do.
I’m giving myself a pass on making this up to my usual standards because my need to post it right now weirdly outweighs my need to write it right.