The year of the tower

On autistic burn out and chronic illness :: ORIGINALLY POSTED ON JANUARY 16th 2024

Dear soft heart,

On the 1st of January 2023 (last year now, damn), I did my annual 12-month tarot spread with the theme card of the year for myself.

As I shuffled the cards for the year’s theme, the tower came up. The tower is notoriously considered the worst card in the tarot. Personally, I may dislike the wheel a tiny bit more (sometimes at least), as there is nothing worse to me than events one cannot control and sudden change, and/or relapse because it’s just a part of the process. However, overall, the tower is known as sort of like the one you do not want.

The tower can sometimes be seen as a good thing though, things falling apart to come together.

However, not for 2023, dear soft heart. I did not want to fall apart to come back together. I was not about that life. I wanted a peace year. I decided my word for the year was JOY. I had written it out on a water color painting and everything and I had hung it on my bulletin board.

2022 was kind of rough for me, but I would take 2022 over right now if I am being honest. There were several different elements at play that sucked, but worse of all… I had chronic health conditions that were starting to come out of remission in a severe way. I hadn’t been feeling the best for a while, new symptoms showing themselves, old ones coming back sort of like a haunting, but over the course of the year, I started feeling like I had no skin.

My journey with poor health is a complicated, non linear one. I am autistic and when my parents began their divorce process in 2007 and separated, I had my first experience that I can remember distinctly of autistic burn out. Although it was diagnosed at first as severe panic disorder, GAD, OCD, and literally, severe change adjustment disorder (I am always in awe of that diagnosis given to my teen self - how truly autistic can one get), looking back, it was for sure autistic burn out. I still had and have these anxiety disorders, but their root for me is in autism, rather than stand alone issues.

Spectrum news says about autistic burn out the following:

Some autistic people experience it as an overwhelming sense of physical exhaustion. They may have more difficulty managing their emotions than usual and be prone to outbursts of sadness or anger. Burnout may manifest as intense anxiety or contribute to depression or suicidal behavior. It may involve an increase in autism traits such as repetitive behaviors, increased sensitivity to sensory input or difficulty with change.

Burnout can sometimes result in a loss of skills.

Throughout high school, I could barely function. I would go to school on a good week, about 3 days a week. Some weeks, many weeks really, I missed all days. I had a wonderful friend, Karly, who single handedly gave me all of the accommodations I realistically needed from the school that I never got, every day to pass. She would make sure I got all materials I missed in class to study on my lonesome in the dark in my bedroom at home, hand in projects for me when I couldn’t come in, and she always always made sure I was okay socially and had been doing so since elementary school coming to find me isolated at recess. She even moved her locker to be near mine in the 12th grade so that I wouldn’t be alone or disoriented between classes struggling with executive function. Karly went on to be a nurse, a clear caring type, but sometimes I do wonder how she knew intuitively to look after me, and help me then. She made it seem like the most easy obvious thing in the whole entire world. Karly loved me. As I write in my memoir, she was my rock during these years. A miracle indeed.

High school was a brutal time for me, not just because of what was going on at home, it was a lot to due with the fact that I was functioning as a neurotypical at school when I should have been flagged as severely sensory impaired, at the very least. When I would wear sunglasses in class, my teachers thought I was doing it for attention, and would send me to the office to get in trouble. One single time though, one of my teachers sent me to the disability class room, where they invited me to sit in a dark sensory type room and asked if I wanted to do my work there. Still to this day, that day where I got sent to the disability class room and got to sit in a small adjacent room on a bean bag and do my homework in the quiet dark room, stands out as my most peaceful time at school the entire time I attended. Sadly, most of the faculty at my school and how they related with me was awful, and I wrote more about this in the aforementioned memoir, Can You Turn The Lights Off?

I ended up graduating high school with honours and with several scholarships to college solely because of Karly. Sometimes people go, no it was all you! And while yes, I did do the effort I could do, Karly’s accommodations were the only thing that allowed me to be able to.

At home, living with my mom alone, safe from a lot of issues we had whilst living with my dad, I could not cook, do laundry, help out, hold a part time job (I literally had to quit every single job I’ve ever had - but that’s a story for another day), and I was often having outrageous explosive meltdowns, and shutdowns where I was basically comatose - sometimes for days at a time.

I was labeled by many a friends and extended family as spoiled. I was so tired some days, my mom would have to blow dry my hair after a shower before school because I couldn’t hold up a blow dyer. In those years, it felt like she was the only one, alongside Karly, who believed me.

I began to drink a lot of alcohol during this time and take a lot of benzo to cope with the sensory hell that was the world I had to somehow be apart of. The benzo drugs, prescribed to me technically, were my lifeline. I could not even think about going to school without one. Whereas alcohol numbed my senses a bit, made every thing a bit more bearable.

I’ve said this in a lot of my nervous system health classes, so there’s a chance this isn’t new info for you if you have taken some group programs or one-off classes with me before, but I believe and I’ve observed when you are autistic, your window of tolerance seems to be typically smaller than one of a neurotypical because of the fact that the world is naturally brighter, louder, and more intense for you. This was surely the case for me.

What I mean by smaller is that, you get kicked out of it quicker. This may be true for all neurodivergent folks, ADHD included. I am not diagnosed with ADHD, so I can’t speak to that experience directly, but I have noticed it and heard accounts that are similar in the ADHD population.

Essentially, stressors and triggers affect us more intensely than our PNT (primary neurotype) peers and we get kicked out easily and very often. And if we don’t know how to get back into the window of tolerance (with good nervous system health practices) and we don’t have good internal and external resources available to us, we perhaps don’t live there ever at all. I have a lot to say about this, and I will in due time, as I’ve been working as a nervous system health coach for a long time, and I have lots of practices to share for how we as autistics can care for our nervous system that are different than the norm.

It’s a given that the kind of developmental trauma I underwent in my childhood would affect any person, regardless of neurotype and force someone into chronic stress responses from repeated inconsistently met needs, that could easily lead to chronic health conditions. There are multiple studies, like this one, that have been done that prove that ACE (adverse childhood experiences) contribute to a higher prevalence of chronic illnesses.

So yes, I was living trauma as anyone else would be in my situation, too much too fast too soon, without my consent, but I am pretty confident that my first autistic burn out came quick and fast not only because of that, but additionally from having less resilience to stay in my window tolerance facing stressors and triggers that my PNT peers could handle just fine, for example, the lights in our school science lab, the loud lunch time cafeteria, the unbearable bus ride to school and back home, tight uniform clothing, a schedule and demands I could not keep up with my brain and nervous system’s natural processing time, etc, during this very stressful time.

In high school, I also started developing what we know now as post viral illnesses, at the time, simply called mystery illnesses in most cases, following the epstein barr virus (mono). I suffered for years daily with excruciating fibromyalgia, chronic and near constant infections, many allergies (what I now consider MCAS), and ME/CFS. In high school, I was referred to as the sick girl.

I believe because my nervous system was not in parasympathetic ventral vagal tones much or at all during this time (window of tolerance), that my immune function was impacted by being in sympathetic charge very often or even collapsing into dorsal vagal often (what we know as basic fight-flight + freeze).

Thankfully, my story then was a happy one. I recovered from massive chronic illness issues roughly in 2014/2015 and I stayed in a remission for many years where I was able to be physically and financially independent as an adult.

I did still have some health life interruptions during this time, namely benzo withdrawal, recognition of (h)EDS and a treatment plan to help this condition, and of course, I was still disabled as an autistic in a neurotypical world which still posed many issues, but I had figured out a way to meet my autistic needs which at the time, improved my health greatly.

A large part of this was due to the fact that I became self-employed in 2014 and worked entirely from home. My business was successful and equally accessible for me as a disabled autistic working in her special interest field, which meant I had access to funds to be able to have great success in using food, supplements and healing practices as a way to help my health and to help my nervous system get back into window of tolerance, through basic things like safe housing, and thus function better and even well.

By the end of 2022 though, something was clearly wrong.

Needless to say, 2023 was the tower for sure.

I felt like the landscape was becoming barren, the water from the lakes being drained and left parched, with no way to stop it from happening, no way to understand where the drain hoses were even coming from, let alone cancel their arrival. And where were they taking the water, anyway? It felt like the thick bodies of water, depth I had ensured in my world, they were evaporating before my eyes, but instead of making rain clouds in their new form, being transformed and offered once more through their alchemy, they created darkness. The sky being overtook by clouds that refused to burst until night time began to be painted above me permanently instead. It felt like there was no dawn left to wait for; no horizon arriving before me in a few hours - just dark, cloudy, starless, middle of the night cloudy skies, hopes crushed.

The beloved and now deceased Rachel Pollack, the trans activist and tarot expert/mystic in her book, “78 degrees of wisdom”, says this about The Tower,

“The universe, and the human mind will not allow us to stay forever imprisoned in our towers of illusion and repression. If we cannot free ourselves peacefully then the forces of life will arrange an explosion. I do not mean to imply that that we in any way enjoy the painful experiences that shake us loose, or that we can see the beneficial ends from such means or even that the process always results in freedom. Very often a series of disasters or a period of violent emotions will cripple a once strong personality.”

I was honestly scared about how things could get worse. I wasn’t sure if I’d be able to handle it. I was too tired. I wondered what I still had repressed or even what was still an illusion to me. I wondered if resurrection was a guarantee and deep down, I knew it might not be.

Now, to the person who does not do tarot professionally or oracle professionally, or even to someone who does not believe in any of this, I am sure, you’re like, whatever, it’s a playing card deck at most.

I do often challenge those who don’t believe in tarot or divination tools in general to check if it’s just that they aren’t valuing feminine coded things such as intuition or art, emotional expression, self-expression, or the mystical, the unseen energetics of our existence.

But here’s the thing, I would have really really loved to agree with you – especially since this was the tower we were talking about as a year theme card. Of course, I didn’t want it to be legit. However, every single theme card for a year that I’ve ever pulled for myself have been usually pretty spot on - scarily so even.

And I also know the cards and other divination tools are simply reflecting us to us– sometimes even before we are ready. I know too that I can pull cards that reflect me and my energy field pretty well - I trust that skill in me.

If you have a regular tarot practice, especially one you carry with you from year to year, you will start to get to know certain cards that will not leave you alone. You develop a bond with them, the cards teach you until you have learnt.

So, yeah, the tower. The friggen tower.

Dear soft heart, I kid you not, I was so freaked out that my heart started to pound and my breath quickened and I did something I had never ever done with tarot in my 15+ year of personal use, 10+ year of professional use: I put the goddamn card back in the deck and reshuffled.

GASP. Yes. I know.

I thought, surely, there has been a mistake. This is not my tower year. This is supposed to be my star year. I probably wasn’t paying attention when I was pulling, I said. I didn’t do the ritual properly, I repeated. So there I went and I did my magic opening sequence once more, and then, I took a deep breath and I shuffled once more in conversation with my beloved deck, what is the theme for me, Emily, for 2023?

Of course… after thoroughly shuffling properly, the single card that came back out as I had my eyes closed, head to the ceiling, breathing deeply, was none other than yes, the tower card. I opened my eyes and looked down to my hands.

Mother Fuc…… BEEP….

Image source: the trusted tarot

I haven’t written a lot this year, mostly, because I have been in the throes of an extremely vulnerable time with my body, which has meant in consequent an extremely vulnerable time with my business and my art & my money, with my life, with my environment, with my relationships.

You never want to come out of remission when you’ve had chronic illness. Also for someone like me, who’s done everything right to heal, stay and be healthy on every level, probably even to an extreme neurotic degree, it feels more than frustrating to be in this position. It feels like the ultimate let down. Your worse nightmare happening within and around you.

If you’re new here, I will be writing more about my experience of disability and chronic illness in this new year as I plan to get back to writing (keep reading!) But for now…

All this to say, I have dedicated my life to the healing arts - not just in my profession, learning everything I possibly could about healing and resolution and translating it across many different mediums, but also, my entire personal life has had the one function for as long as I can remember: to recover.

And yet, I am still sick. Actually, I am sicker than I have ever been. One could say I am living my biggest fears about this whole thing in real time - I got better, but then it came back.

Why?

I don’t know (yet) and that’s the most horrible thing about it all. I have some theories sure, but it’s hard to get conclusive answers. Although, it doesn’t stop me from attempting.

I’ve done this thing all year though which was largely to isolate - including from my own writing. I couldn’t deal very well with people not getting how much pain I was in, and having bad answers, and honestly just keeping on business as usual.

It is a very isolating experience in general to be severely chronically ill in a world where there are no safety nets for such things. Most of us are not taught how to be with illness that is more complex than acute and quick. If you do not have family wealth or support, you are essentially and completely utterly fucked. I do not have family wealth, but I do have family support in my mother, which is honestly the only reason I am writing this post at the top of the year this year. And that is not just a figure of speech, I would not have survived without her this year physically speaking.

Even if you do have these things though, this experience is highly traumatic. The loss is unexplainable. From your own dreams to relationships that deteriorate to practical matters like finances, or even just losing getting to do things you love wears you down - like for me, it’s those cooking and going for walks hobbies I rely on for my mental health, for my life enjoyment. All the usual mental health advice cannot be used. Some days, you have to pep talk yourself to walk to the bathroom through the pain and the fog of it all. It’s not the same as most life experiences, to be severely ill like this.

Also, the more I talked about it, the more I wrote about it, the more it was real. The more that illness had come back and stolen things from me. The more I would have to face this trauma and not just avoid it and hope it was just a small fluke or a bad couple of months - a blip.

Perhaps if I didn’t write about it, when it would be over, I could just come back to writing and then it would be like it never happened, because it was never properly or extensively documented.

Perhaps, I could have the tower in my life privately, and then come out on the other side, like the star does, peaceful, returning the water back into the lake and into the river, recovering from the shocks of it all.

source: labyrinthos

It’s hard to say if choosing not to write much in 2023 helped me or didn’t help me this past year, perhaps it made things much worse. I couldn’t bring myself to do it most days. Most of the time, I didn’t have the energy, and often, I felt too scared to reveal myself like this, to be seen in my greatest fear happening to me, even though I’ve tried so hard to avoid it and so hard to create a life where my illness wasn’t at the centre of it all. That felt too vulnerable to be seen in for a long time, and me too fragile to withstand it.

So, what I am most curious about now is exploring what happens when I don’t resist making illness the centre of my life, what it tells me if I go, okay fine, here’s some space to exist. And not just privately, as I’ve been doing it. No, like what happens if I let illness be really known. What if my illness belongs with the rest of me, and that even if it’s stressful and horrible and exhausting for me and who takes care of me, I am not hurrying it out for me to be able to write again? Because to be honest, I can’t even if I try to and I know that simply because… I’ve really tried to. What if I am less afraid that it will be documented and a part of my story, instead of an A to B picture sequence from the past. What will happen? I want to find out.

I am curious about what the (deeper) roots of all of this are, what lives in the mycelium of my body? Of your body? What is the story of my joint, and muscle pain, our joint and muscle pain? My unrelenting fatigue, your unrelenting fatigue? My vestibular issues, and yours? My insomnia, your insomnia? What leads to the lone mushroom popping out of the ground after an intense rain fall, what has been there all along, unseen, unknown?

Is it the same as the ones we already know, or are there new ones too? What are the emotional, spiritual, biological & physical and mental aspects of all of this? I want to know even deeper than everything I know so far, I am willing to go there in myself, in my environment, in the systems, and the ways in which our world is made up to make sure people like me (and I’d argue eventually everyone) burn out, get sick and stay sick, even despite our best efforts and much too early in our lives - stripping us from enjoying being alive as humans in our bodies - the precious opportunity that it actually is. And I’m curious about what we can do, transform, alchemize, see, and hear about it all; for ourselves, for each other, and for the future. I am always going to be curious about solutions and resolution. But what I am newly feeling pulled toward is what if I wasn’t trying to keep my body’s stories at bay by not being sick, or trying to get better by a timeline, even if it’s for legit reasons like my survival under late stage capitalism. What if I let her be sick and found out what she said? Perhaps she’d help me, perhaps she’d help us.

Perhaps our bodies haven’t failed us, perhaps, they are trying to show us the way. And yeah, perhaps life wrecked us, and perhaps there will be no solutions, sure. But at the very least, I could hear where my body’s been and record her interview and that would be worth something within itself.

I am an optimist by nature, although since the very nature of life is that none of us comes out of it alive, I do accept there are things that have no fixes. It takes maturity to be able to know what we should aim to solve and what we should let breathe and take care of while we still have a chance to. Story is rich and guides us to what is next, so I am interested in trying to figure out this narrative, these narratives, that live in my body, and perhaps by extension, yours too, because although I do not know for sure if not writing for nearly a year helped or not, I do know this: I miss writing. So, hi.

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