I recently moved. After 14 years of living in a very rural area and six years of living in a different rural area before that along with growing up surrounded by dirt roads and Ponderosa pine trees, my family and I moved to the city. There were various factors that led to this move needing to happen. Work, school, the lack of sense of community due to cultural and political difference, etc. We didn’t feel safe or welcomed anymore where we had been living. There was nothing left there for my children to call home. A change was needed.
I am very happy to be a home owner again. It has been a long time. Even with the new house that I can call my own, I am having difficulties with adjusting to this move. I am not a city person. I never fit the culture that is typically found in rural areas, but I new how to navigate that culture. I could easily escape on dirt trails up into the trees where I found comfort. I am accustomed to counting available restaurants on one hand and only having one grocery store to go to.
Now, there are so many of everything. I find it truly mind boggling. Being in the city is not new to me. Living in a city is a whole other thing entirely. The city is so hectic. In a rural community there is a rhythm, a single rhythm. I understood this rhythm. There is no single rhythm in the city. There is a dizzy kaleidoscope of intertwining rhythms that I don’t understand. My nervous system is overwhelmed.
I have been trying to find words to express how I feel. These words became poems.
I Yearn for the Green
I yearn for the green
To find peace in solitude
To hear birds over vehicles
To feel dirt instead of pavement
To see trees and flowers instead of buildings
To smell the scent of the forest instead of the city
I yearn for the green
I am in the Gray
I am in the gray, the in-between
Neither rural anymore yet not city either
I fit nowhere yet strive for routine and normalcy
My family has adjusted to the city, yet I find myself lost
I make the quiet green in my basement and hide in its refuge
I surround myself with books and thank the trees that made them
I am in the gray, searching for my peace
I Need the Trees
I touch the trees in search of connection
I see the sunlight sparkling through the branches
I feel the texture of the leaves in my hands
I smell the scent of warm pine needles beneath my feet
It is safe to cry and yell and scream amongst the trees
Trees understand this connection, they do not judge, they do not criticize
Trees help me find peace within myself, I need the trees
Mister Rogers would end every show with the same quote, “You always make each day a special day. You know how: By just your being you. There’s only one person in the whole world that’s like you, and that’s you. And people can like you just exactly the way you are.”
Being who you are is easier said than done. There are so many spoken and unspoken expectations, so many rules and various codes that being able to just be you can be really hard. Poet E.E. Cummings wrote about the ongoing battle to be oneself in a world “doing its best, night and day, to make you everybody else”.
I am autistic. I have a brain that operates differently than most people. I was late diagnosed which happened only after my children were diagnosed. For the longest time, I didn’t understand why I was the way I was. I thought I was broken in some way because I couldn’t be like other people. I didn’t have the words to understand or properly express myself. I spent years feeling like I was screaming in my head not understanding why others could not tell how much I was struggling. It is only recently that I have healed far enough in my journey to feel safe and comfortable enough to explore what it means to just be me.
Just being me feels like an act of rebellion against a world full of influencers, unrealistic and unreasonable demands, and this insistence that we all should conform while also pushing this idea of rugged individualism. When you stop and think about it, it really doesn’t make a whole lot of sense.
Humans are social creatures. We yearn to belong. Belonging helps with survival. But what happens when we feel we don’t belong? How far will a person go to belong? How much of themselves will they be willing to erase or hide away just to fit in?
Learning to just be yourself can be isolating and scary. It requires a person to sit with the parts of themselves they may have broken apart from or have locked away somewhere inside themselves. I have spent the last seven years in trauma therapy learning how to make myself whole again. This journey has been anything but easy. How I did this is not for everyone. I have done this the way I needed to.
Everyone grieves in their own way, grows as a person in their own way, and heals in their own way. There is no time frame to travel on this journey. It takes however long it takes. What does it mean to just be? That is the million-dollar question. A question I have struggled with for a long time. There is only one me, but what does it mean to just be me?
To find the answer to this question, I have been doing a lot of sitting and feeling without judgment. This took practice and guidance from my counselor. I am still learning not to judge parts of myself. I am getting better. But what does this all mean? It sounds weird, doesn’t it. To sit and feel without judgment while allowing the parts of yourself to tell you their story. You can learn a lot about yourself through this process. Remember, I am not a counselor, and I am only sharing my own experience with this process.
I have learned through therapy and giving myself the time needed to process that the stories of the parts of myself form chapters in my life. When these chapters are put together, a whole person forms. My goal is to learn who this whole person is.
In 2016, I wrote this paragraph:
I was born on a Tuesday. My birth happened in the very early morning hours in the beginning of June. My mother had placed a newspaper clipping in my memory box that stated, “Tuesday’s Child – Full of Grace.” She would often refer to me as “Tuesday’s Child”. My name was chosen for its meaning. In Gaelic, the meaning of my name is Peace; Poetic name for Ireland, or as my mother would say, “a green, peaceful, beautiful place.” My mother saw me as her beautiful, peaceful Tuesday’s Child who was full of grace. So, what the hell happened?
Growing up in a world that was not designed for someone like me left a lot of damage. Due to how my life unfolded over the years, parts of myself shattered and were hidden away. This happened due to survival reasons and due to trauma. Me as a whole person never got the chance to fully develop due to how shattered my chapters were.
This is the challenge of learning to just be me. I have had to clean out and process the layers of trauma that I experienced throughout my life in order to make room for my shattered parts to reintegrate. These parts are different ages, and I have been learning how to give these parts what they need so I can grow and heal as a whole person.
This has meant reclaiming my childhood, letting go of internalized shame, wearing the clothes I have always liked but believed I couldn’t, learning how to play, and living my life the way I need to. This life is not based on anyone else’s idea of how a life should be. My life is mine and I have been trying to design it the way that works for me. But life seems to keep happening when you are making other plans.
In the Second Law of Thermodynamics, there is a concept known as the Entropy Paradox. When this paradox is applied to humans, the idea is that as we attempt to remove visible signs of disorder, we create deeper, more systemic forms of it.
We, as humans, tend to fight nature’s laws to create a form of conformity that is then pushed onto the population as an agreed upon standard of being. Unforntuately, this only amplifies the chaos we meant to eliminate. This leads to a lot of people within the afore-mentioned population believing they need to change who they are to fit into the conformity pushed on to them which further results in chaos within the person who feels forced to conform.
In other words, depression, anxiety, unhappiness, feeling of being trapped, having needs not met as well as feeling ignored, dismissed, erased, and silenced. There is a whole lot of traumas happening within this paradox to a wide range of people. This has been going on for so long that this paradox has become part of accepted culture. What are we even doing here? Why are we like this? We are hurting ourselves and others by insisting that this paradox that we live in should be the way we all should live. This is not healthy.
Humans are known as agents of entropy. Dickran Guerguerian states, “The moments of “disentropy,” the miracles that defy chaos, are moments of grace—pockets of hope where life asserts itself against the overwhelming tide of disorder.”
I stand here asserting myself against the overwhelming tide of disorder that conditioned me growing up that I couldn’t be me. I defy the chaos that I was born into and continue to build a life that is not based on conformity of a culture that historically believes people like me should be indistinguishable from our peers. I can only be me, because, as Oscar Wilde is attributed to saying, everyone else is taken.
Living authentically means you aren’t exhausting yourself trying to fit into a mold that wasn’t built for you. I am a square peg that has been damaged by being pushed into a round hole that I will never fit. I chose to live authentically. This means I will do my best not to shrink for others just to fit in and to make them feel comfortable. This also means continually working on removing my layers of masking that formed over 50 years of living on this planet. I need to stop hiding myself and embrace who I am as a whole person.
This is a promise I make to myself, a promise to just be me.
NOTE: My spouse has given me permission to share information about them within this blog.
To dream of a life, these questions start at a young age. What do you want to be when you grow up? Where do you want to end up when you get older? Who do you want to date? Who do you want to marry? How many kids do you want? What degree do you want? The questions go on and on. The answers to these questions are often shaped by the society and environment in which we were raised.
As a GenXer having been raised as an undiagnosed autistic person in a loud, emotionally dysregulated, traditional authoritarian home that was a mix-match to who I am as a person, my dream of a life has always been about safety, quiet, space, and connection with a husband, children, and a job that met my passion for learning.
Life had other plans for me.
Being a teacher has been my goal since I was seven years old. Through a lot of hard work and determination, I did become a certified Science teacher. How my career has played out over these past almost 28 years of having a teaching certificate has been nothing like I had imagined it. My dream of being a teacher has been a jumbled mess across multiple schools and grade levels as well as advocacy roles at nonprofits. Due to my health, I am now facing letting go of my teaching certificate. It breaks my heart just to think about it. I focus more now on being a Program Manager for a nonprofit that provides services for those with disabilities.
Life had other career plans for me.
Growing up, I would draw the same type of house (two story farmhouse) with the same type of landscape (land surrounded by green hills and trees) as well as blueprints and furniture arrangements. I have only been a homeowner once for six years. The home was a three-bedroom, two-bathroom older manufactured home on a double lot with a double garage at the edge of a rural town that overlooked a lake.
I loved our home, but life had other relationship plans for me.
My first marriage ended and the house was given back to the bank. I have been an apartment renter in rural areas ever since.
I raised my children by myself. My focus was survival, putting food on the table, keeping a roof over our heads, home schooling, and making sure my children got the care they needed. My life was put on hold. The years went by, then life had a surprise for me. I met someone who would eventually become my second husband.
My life seemed to be going well, until life threw me another curveball. In one year, breast cancer diagnosis plus surgery and radiation treatment, two bouts of severe pancreatitis that put me in the hospital followed by a bout of severe colitis. I have been a runner for over 30 years. I don’t drink alcohol. I don’t smoke. I don’t vape. And I don’t do illicit drugs. I have tried to live a healthy lifestyle my whole life, but life had other plans for me.
And for a huge punch in the gut, this all happened in the same year that my husband came out as a transwoman. I am not a lesbian nor am I bisexual. I am a demisexual heteroromantic cisgendered woman who unbeknownst to me married a woman.
I have been as supportive as I can be, but this transition has been hard. I am experiencing ambiguous grief. My husband is gone. There is a person with a new name, new clothes, and a new way of interacting in the world living with me. They smell different, sound different, move different, and feel different when I touch them. I am still processing it all and I am really struggling.
My sexuality is not fluid, and I don’t want a platonic marriage, which is what I have now. I don’t know what is going to happen. I feel like I am losing my identity while my spouse is finding their authentic self. As happy as I am for my spouse in embracing who they have always been, I miss my husband. This is a lonely process for spouses of those who are transitioning. I don’t know what plans life has for me regarding my second marriage. I don’t know if this marriage will last.
What about my dream of a home?
I finally qualified for an FHA home load – $300,000. I have only lived in rural areas and have only worked and gone to school in more urban areas. We are trying to get out of the rural area we currently live in due to the cultural environment. We live in area that is not welcoming to a family like ours. This means moving into an urban area. No hills, no space, and no two-story farmhouse.
Then there are my children.
Both my children have now signed their first lease. This is a good thing, but also a sad thing. Empty Nest Syndrome is no joke. I have been struggling with it for the past five years with my children going off to college across the state in different directions and now living off campus in a different city. I am so proud of them, but also dealing with the grief associated with giving children wings to fly away to live their own lives.
This was not my dream. This was not how I imagined my life to be. I find myself at 50 years old needing to let go of my dream that I had for my whole life while at the same time learning how to redefine and accept what my life has become. My nervous system is shot. There has been too much to deal with all at once. My heart is breaking. Why can’t I have the life I had dreamed about since I was a child?
We tell children that achieving their dreams just needs hard work, determination, and dedication. If a child is lucky, they will have adults in their life who provide needed emotional support to get through the hard times. These adults will be there to help solve problems and have a place the child can fall back on when life decides to have other plans.
What about those who don’t have access to a needed support structure? What about those who have to fight through multiple barriers just to get to levels of achievement that can be seen all around them? What about those who simply have a dream of having their own house where they can breathe, feel safe and do not have to constantly worry about finances and getting their medical needs met? What about those who just want to have that one person who they can be physically and emotionally close to?
Why does life have to be so hard?
I have been in some level of autistic burnout for decades. Autistic burnout often gets confused with depression. These two conditions can overlap, but treatment for these two conditions is different.
After reading, where do you think I am emotionally and mentally? How do you help someone who is struggling with complicated ongoing medical issues, autistic burnout, Complex-PTSD, marriage issues, Empty Nest Syndrome, plus letting go of a dream of how they wanted their life to be all at the same time?
It doesn’t sit well to ask why has life decided to put so much on one person to carry all at the same time. I don’t have the words to explain this feeling. This question feels strange in my gut. Perhaps it is a signal, a message of some sort. This is something I need to sit with and process more.
I feel detached from the world, floating and observing, like a spacecraft orbiting the planet readying to launch out into the unknown. No sound, no words, just waves that can be felt when listening to the main theme of Interstellar. My world feels like it is spinning and rushing towards some unknown place in some unknown time. I feel I am being pulled away from what I know towards an uncertain future with no handrails, no guidebook, and no anchor.
What is my art form? For years I have pondered which medium seems more natural to create with. Paint? Pencil? Clay? Is it writing? Creating curriculum? What if it is something entirely different?
What if my art is creating structure out of chaos? Finding stability within entropy? Empowering others to believe in their own strengths and skills? What if my canvas is the environment and my medium is the scaffolding that I create within that environment that supports the people that live and work there? Then I move on to the next canvas and do it all over again.
Throughout my entire career I have created something with little resources that affected the people within that environment in a positive way. Whether it was a new science education program, a new classroom management system, a new disability advocacy program, new staff training, a more comprehensive data management system, and a more in depth and organized way of managing a large grant program – my career has felt wonky. I didn’t stay at one school or one grade level or even one subject. I have three degrees – BS in Earth Science Education, MEd in Autism Education focused on advocacy, and a MEd in Adult Education focused on differentiated instruction.
For over nearly 30 years I have managed to go from improving a single high school science program, to creating an entire elementary science education program, to developing a district wide science fair along with a science and math family night that had a higher attendance than the high school football games, to providing disability education and advocacy to families with children with disabilities throughout the east side of the state to now being the Program Manager of a nonprofit that provides advocacy and services to all ages and all disabilities across five counties in northeast corner of the state along with also doing grassroots advocacy at the regional, state, and national levels.
This had not been my plan. I was going to be a science teacher at a middle or high school. I was going to settle in one place, have my own house, be married, have children, and just keep teaching science in that classroom. My career started out as planned, then took a wide trajectory in a whole other direction that was not even on my radar.
Life decided it had other plans for me.
I grew up in a family that moved A LOT! My parents did not travel; they would regularly move to a new house or a new state. I am currently 50 years old. In my lifetime, my parents have moved 16 times in five different states. I hated moving. I would be asked if I had a parent in the military. Nope. My aunt actually called my parents “gypsies”, and it wasn’t a compliment, but my parents took it as such.
All I have ever wanted was a house of my own, a place where I can feel safe and comfortable. I had a house for six years. My house. But life had other plans. As an adult, I continue to move on a regular basis, but for different reasons than my parents. I moved for work and for my than husband a few times, moved for better schooling options and better services for my children, and I moved for marriage twice.
The longest I have been at one job is six years, the whole time I was a homeowner. That teaching position almost killed me. This isn’t hyperbole. My doctor literally told me that my job was killing me. Having 305 students Kindergarten-7th grade was too much. The situation was too much for anyone and during that time I was diagnosed with Autism. Half my students were English Language learners, another quarter were Special Education students, and I had no help. I was teaching Science while also teaching the language of Science in English and differentiating my instruction to meet the needs of all my students.
I miss being in the classroom. I knew I wanted to be a teacher since I was seven years old. I fought hard to get and maintain my teaching certification. I am approaching 28 years of having that certification. Being a teacher is a part of my identity and now I am facing the fact that I am allowing my teaching certification to expire. My health no longer allows me to work in the classroom full-time. I still go into classrooms to provide youth transition presentations. I still provide educational opportunities to community members and other service providers. I am still technically teaching, just not in the transitional sense. I am no longer restrained to one classroom in one school, and I haven’t been in quite a while.
My main background is science education and autism/disability education, but I also have an art background. I often incorporated art into my science lessons. I support STEAM – Science, Technology, Engineering, Art, Mathematics.
I need to create. It fuels me. So, I ask again – what is my art form?
I have a long history of being hired into a position that has resulted in me embracing a role that leads me to create structure as well as a system that can operate with regular maintenance and guidance. Then, for one reason or another, I move on to the next job and do the same thing. I go in, settle the chaos, stabilize the environment while creating support for those in that environment, then move on.
Why do I do this?
I long for stability, structure, sameness, and safety in my own life, yet get bored and antsy after I create that very thing. I often feel that I educate myself out of a job. But what if it is not like that? What if my brain is interpreting the situation based on expectations that never really fit me as a person?
What if my art is the startup, the problem solving, the process of building? Maybe I am an introverted founder, a builder personality type rather than a manager personality type. What is I am an intrapreneur rather than an entrepreneur?
The universe is built in such a way that prevents entropy from completely tearing the fabric of space/time apart. The Higgs Boson fields maintain enough structure (like a well-built highway/road system) that keeps particles moving at different rates on different levels while at the same time acting Ike a compression field to mend any tears and to keep everything functioning as necessary. The system is not rigid. There is a constant transference of energy taking place. There are constant flow and environmental shifts. The universe is dynamic, but balanced.
I wonder if this is how my art works. I asked this earlier – what if the environment is my canvas, and my medium is the scaffolding that I create within that environment that supports the people that live and work there? Then I move on to the next canvas and do it all over again fighting entropy every time.
Fighting entropy requires the continuous application of energy, effort, and intentional structured action to create order. By doing this I am continuously burning myself out due to dumping so much energy into this fight. I need to learn how to balance the entropy battles. My life energy is being sucked out of me. I am giving too much out into the universe and not sufficiently refueling myself so that I can stay functioning at a healthy level.
What needs to be said or done to help my brain understand structure and stability for myself while still honoring this introverted founder that I seem to be?
When I talked to my husband about this idea of being an introverted founder/intrapreneur, he referred to it as being like ants. That comment did not sit well with me. I don’t see myself as an ant. I am not a worker drone. I see myself as an innovator inside a system that I draw resources from. I follow protocol, policy, and procedure. This establishes a continuity of process that is understood by all staff and legally supported by management and the board. This also provides a safety net for staff and management.
For years, I have been living in chronic burnout. Some days/weeks/months are worse than others. Living my life as I have had is getting harder every year. My health is not good. I need to take more time for myself but find this difficult due to lack of finances and being able to feel that I can walk away, albeit briefly, from both my personal and professional life.
This weekend, I found the funds to stay at a hotel for three nights by myself. As I write this, it is the last night at the hotel. I really needed this time. I feel this is what I needed to do during my four weeks of Paid Medical Family Leave (PMFL), but I couldn’t afford it. This weekend I read, I exercised, I wrote, I colored, I slept, and I had an appetite for the first time in months!
I go back to my life tomorrow morning – back to work, back to my family, back to all my responsibilities and all the stress that comes with it and with all the triggers and hypervigilance. I am tired of being hypervigilant all the time. I don’t know how to live my life in the way that I lived this past weekend just focusing on self-care. I don’t know how to be in the world without constantly being on guard, problem solving, addressing misconceptions, advocating for all, being emotionally present for everyone, and putting myself in the cross hairs of those who fight against everything I support, while also trying to take my mask down and living authentically as myself.
I fight entropy on a daily basis. I am like a star burning through its limited energy sources, expending intense, consistent energy to create order, meaning, and beauty in a universe that naturally drifts toward chaos. Eventually, those energy sources will be depleted, and I will collapse into myself like what happens when a white dwarf forms in the dying breath of a star leaving behind only its dense core. I already feel like a red giant struggling to maintain a stable structure.
I think a radical approach is needed. I need to literally remove myself from my life on a regular basis, like I did this weekend. I just don’t know how often I can logistically do this. Time will tell, I guess.
Growing up, we are asked to tell people what our favorite color is, what our favorite animal is, favorite movie, favorite book, etc. Our options to the answers to these questions are typically geared towards what gender we were given at birth. If a child strays from these predetermined options, they are told such and such is just for boys or such and such is just for girls. We are conditioned from birth to follow these predetermined paths through socialization and emotional manipulation.
These might sound harsh, but there is real research on this subject. Boys are socialized to be stoic, strong, and independent, discouraging emotional expression, especially vulnerability, leading to potential anger issues, risk-taking, and reluctance to seek help. Girls are encouraged to be nurturing, empathetic, and expressive (especially sadness/anxiety), potentially leading to suppressing anger or prioritizing appearance/social harmony over self-needs. The favorites of boys and girls are steered towards these societal norms of masculine and feminine.
This early emotional manipulation and socialization follow people into adulthood which then directs them into roles that are separated by gender. For example, women are often concentrated in lower-paying, “caring” professions (education, health, personal care), while men dominate higher-paying fields like STEM, management, and skilled trades, contributing to the wage gap.
I was born a cisgender female. I have been interested in science as far back as I can remember, especially Earth and Space Science. By the time I was seven years old, I knew I wanted to be a teacher. I was nine years old when Transformers was released in the US. I continue to be a Transformer fan to this day. But I was a girl when the toys became available. My mother insisted that I like Barbies. Don’t get me wrong, I do like Barbies, but I also like Transformers as well as Matchbox cars, building sets, action figures, and marble runs. Guess which toys my mother always got for me. Yup, Barbies.
She-Ra Princess of Power came out a year after Transformers. I always thought He-Man was so hokey, but She-Ra was different. I became an avid fan. As an undiagnosed autistic child, I connected with the lessons that were in every episode. I took these lessons seriously. I learned how to socialize and interact with people through watching She-Ra. I saved up money and bought the toys. My mother would complain that they were ugly, but I didn’t think so. I saw the figures as strong, smart, and capable reminders of how I could be as a person.
I also collected original Strawberry Shortcake dolls that I loved the smell of. The smells brought me comfort. By the time I was in high school, my mother would shame me for still having these toys that meant so much to me. She had kept all my sister’s and my Barbie stuff, but for some reason, I needed to grow up and get rid of all my She-Ra and Strawberry Shortcake toys. And so I did and it broke my heart. I wasn’t allowed to like what I liked. I was supposed to like what my mother liked and what society expected me to like. Things that I would eventually call “foo foo girly stuff”.
My mother wanted me to be a “mini-me” version of her. Same likes, same fears, same clothes, same look. But I wasn’t a “mini-me”. I was only me. My father would often tell me that I needed to be more like my sister. I never really understood what he meant by that. I didn’t understand what was wrong with me being me. I also didn’t understand why my favorites were wrong.
The reality is that nothing about me was “wrong”. I was born into a mix-match with my family. I was born into a family who didn’t understand me. They felt I needed to conform to how they saw societal norms, that it would be easier if I just became a version that they thought I should be. But I wasn’t that version and no matter how hard I tried, I would never be that version.
Over the years I have worked hard on my recovery. Complex-PTSD takes a very long time to peel away the layers, processing one layer at time and finding ways to release the pressure from inside the walled off parts of yourself. When I began this journey, my parts were shattered and walled off. I was cut off from my emotions and had been surviving in the logical, stoic part of my brain. I didn’t feel feminine and there were times that I didn’t feel like a gender at all. During these times I wanted to strip my skin off. This is what trauma can do to a person. I have been slowly reintegrating my parts that got left behind in past trauma. This wasn’t a linear process. The parts would emerge out of order when they were ready.
I have spent years trying to learn how to just “be”, but I couldn’t figure out how to “be” when I didn’t know who I was as a whole person. My core-self had been buried so deeply and protected by my defenses that I didn’t have access to nor any real understanding of who that core-self was. There were also other factors playing into this as well.
I have come to the realization that I was taught a distorted version of femininity which twisted my view of what it means to be a woman. How I viewed my gender and my own sexuality was skewed by a dysfunctional homelife and by societal norms that didn’t make any sense to me.
Before I go further, I want to explain some concepts as I understand them. Gender and sex are two different things. Sex refers to biological traits (chromosomes, anatomy, hormones) typically assigned male, female, or intersex at birth, while gender encompasses social roles, behaviors, identities, and expressions (man, woman, nonbinary, etc.) that are shaped by culture and individual experience. Sex is about biology, while gender is a complex mix of self-perception, societal expectations, and personal expression, with gender identity being an internal sense of self. Then there are sexuality and romanticism. Sexuality (who you’re physically attracted to) and romanticism (who you’re emotionally drawn to for relationships) are distinct but often overlapping aspects of attraction.
I was raised in a home that never spoke about the LGBTQA+ community. I had no real understanding of what being gay or being a lesbian was until I was in college in my pre-teaching program where I read about the pink triangles being used in certain classrooms. I didn’t know what a transgender person was and I hadn’t heard of the word “queer”. The home I grew up in was not a safe place for people of color and those who are queer. I was incredibly naïve, but I did not share my parents’ viewpoints. In fact, I thought only having two genders was not a proficient way of handling matters of relationships.
As a naïve literal-thinking undiagnosed autistic child, I was taught that there was only one person made for each person, another half of the person, so to speak, that needed to be found to get married and have kids. Remember, I was a child when I concluded that having only two genders was an inefficient way of doing things. It didn’t make sense to me that people would have to spend so much time and energy and have so much loneliness seeking their other half.
I was never given a chance to explore my gender, sexuality, and romanticism side of myself. I was expected to be a heterosexual straight woman, and that was that, no question about it. Except, I wasn’t, not exactly.
I wouldn’t start learning what asexuality was until after my divorce, which was after my diagnosis. I was able to connect being autistic with being on the asexual spectrum, because it seemed to fit with how I have always felt, but I never really explored it past learning about what a demisexual was. I also learned about romanticism and stopped at the heteroromantic label.
So, there I was, a cisgender heteroromantic demisexual who could only feel sexual attraction after an emotional attachment was formed. And I left it at a somewhat clinical and logical way of looking at myself. I didn’t realize that I had left out a part of myself, a part that had gotten left behind in my struggle to survive in a mix-match dysfunctional emotionally neglectful home life. I still had not given myself space to explore my femininity.
I have only recently connected with my emotional side at a much higher level. This side of myself had been cut off out of necessity. Survival didn’t leave much room for anything else. This emotional side is where the feminine side of myself was hiding. A part wrapped up in my sexuality, shame, grief, and loss. This side was/is nonverbal. It, or should I say she, is all emotion, no words. She is a teenager – confused, scared, and in a dark place. Depression is in this place. She is also goth.
I have liked the goth look for years, decades even, but being goth was not something that was safe being. I was a “supposed to” look a certain way. I was “supposed to” present myself in a manner that was acceptable to people. Being goth was not an acceptable look, at least, not in the environment where I lived and worked.
Being asexual was also not something that is accepted in our society. The A in LGBTQA+ is for asexual, yet people don’t really talk about what the A means. Our society is heavily focused on sex. We use sex to sell things, to promote people, and to condition people to adhere to society norms. I was taught that it was my job as a wife to provide for my husband whether I wanted to or not. That was the situation with my first husband. Fortunately, my second husband does not have these beliefs.
I stated before that my view on femininity was distorted. I grew up in a home where my mother submitted to my father. He would lord over her and expected my sister and I to comply. My mother also insisted that I dress a certain way. In my baby book, she complained that I like to wear frilly dresses with lace. She wanted me to wear pants. She forced me to wear pants, and I kept wearing pants, particularly jeans, as she wanted me to. As a teenager, she insisted that I wear natural looking makeup, that I needed to use makeup that blended with my natural skin tones and eye color. No dark colors for me, just sunset bronzes, browns and beiges.
I am 50 years old and only now am I in a place in my recovery where I feel I can embrace my goth side. My clothes are dark with long flowing sleeves and lace. I wear dark makeup now. I feel good. I like how I look. I feel who I am inside matches the way I look in the mirror. I feel feminine and it feels nice. I am still not wearing the “foo foo stuff”.
When I share things about myself now, it doesn’t feel so clinical. I am a quiet goth girl who is into guys. Hugs are okay, but that is it, at least for now. I like being married to my husband. I don’t know if I am queer, but I do know that I am not broken no matter what that annoying internalized voice still says. I will tell you all about Transformers and She-Ra along with Star Trek, Star Wars, and Doctor Who. I love music, books, and cats. I will talk for hours about space exploration, space technology, Astronomy and rocks. I love to run outside amongst the trees. Get me out to the ocean beach and I will be out there all day. I love wearing my high tight boots and my batty ring that hugs my finger with its wings. I like the feeling of wearing dangly earrings and I prefer silver jewelry. I wear dark colors, but my favorite color has always been daisy/sunflower Yellow, because it is the color of the sun and happiness. These are my favorite things.
My femininity is not based on some predetermined social norms. My femininity is based on how I feel inside, who I am as a person, as an individual. I wish more people felt they could be masculine or feminine based on how they felt inside themselves rather than what other people tell them to be. I think the world would be a much more pleasant place to live in if society accepted people as they are rather than trying to force them into predetermined boxes of gender norms.
Here is one of my favorite songs – Sarah Brightman: Fleurs du mal
Meaning: Sarah Brightman’s “Fleurs du mal” (Flowers of Evil) explores internal conflict, painful memories, and inescapable dark feelings, using the metaphor of “flowers of evil” that return despite attempts to find peace, representing unresolved love, past actions, and psychological struggles that prevent true freedom.
Last week I was asked to define myself. This was not the first time that this had happened. In fact, I have been asked to define myself in various ways since high school. Remember those Myers-Briggs personality tests that give a set of letters at the end? I always end with INFJ personality (Introverted, iNtuitive, Feeling, Judging) – “The Advocate”, The Counselor”, “The Diplomat”, “The Scientist”. This first personality test was given to me on paper (the internet wasn’t a thing yet). As the years passed, various digital forms of these tests could be found.
These personality tests were all the rage. As with anything dealing with a person, things aren’t so cut and dry. The Myers-Briggs Type Indicator (MBTI) has faced significant criticism from the scientific community. These personality tests have been determined to be unreliable and lack validity, because they force complex personality traits into rigid, binary categories (like Introvert/Extrovert) that don’t reflect reality. This has led to inconsistent results, poor prediction of job success, and a lack of strong empirical backing compared to trait-based models.
Now, imagine you are an undiagnosed autistic teen/young adult who grew up in an authoritarian home that didn’t allow you to step outside predetermined boxes. You saw your emotionally unregulated mother submit to an unregulated angry father. Your mother expected you to be a mini-me of her, even becoming emmeshed with you and you becoming parentified, and your father was emotionally unavailable, but would tell you to be more like your younger non-autistic sister, a younger sister by two years that you were put in charge of. There was no guidance in learning who you were as a person and no space for you to explore and grow into whomever you wanted to become. Due to this situation, those personality tests were taken seriously and you did your best to adhere to what those personality tests explained.
You did push through in some respects of yourself that were not connected to those tests or any definition pushed onto you from someone else. At seven years old, you discovered that you loved teaching. And that is the career path you chose. Everything about your life was dedicated into becoming a teacher. There was no room for anything else and you succeeded! After that, everything about your life would be dedicated to your students. You would unknowingly marry a man who would continue the same authoritarian expectations that had been placed on you as a child. Then you became a mother and everything about your life was dedicated to your children.
Nowhere in this scenario was there any space for personal exploration and development of you. What you ended up doing was taking and internalizing information from other people to define yourself and the things happening in your life only reinforced that internalized information.
As teachers, we had to go through orientation every fall before the school year started. During these orientations, we are told how we represented the school district 24/7 and 365 days a year. We were instructed to always look professional and our clothing needed to be business casual. I took this expectation very seriously. Society as a particular view on how teachers are “suppose to” look. So, I dressed the part. Prim, proper, and professional. There was no exploration of who I was as a person under these circumstances.
A teacher, a science geek, a nerd, a mother, a wife, a homeowner, etc. I defined myself by outside things, occupation, and by the people around me. Nowhere in this definition was me, the person I am inside.
After my diagnosis, I added “autistic” to my definition. Along with this came “Complex-PTSD”. I would eventually use “autistic woman” and “autistic parent to two autistic children”. Then came “single parent”. Yup, that authoritarian, abusive, and neglectful first husband left. I refused to submit any longer. I was not my mother. When I broke free from my first marriage, I also broke free from the stranglehold my mother had over me. Even though I was estranged from my family, that leash never really went away. I still felt those expectations.
My mother passed away last February. At the time of her passing, I felt the leash finally fall away. Something shifted in me. It felt like I could breathe a little freer. I had been grieving for almost a decade the loss of the idea of a mother and a father that I needed but never had. Now I find myself grieving the loss of the actual person. My father has not spoken to me since the estrangement began. I know both my parents loved me, but they didn’t know how to love me. They never let me be me as a person, so they never really knew me. At 50 years old, I am only now learning who I am because I finally feel free enough to explore.
Looking back over the years, I have not been nice to myself. I hated myself. I stuffed parts of myself away due to shame. And those internalized definitions from other people along with my medical trauma got wrapped around those parts which got buried deep within my psyche.
I have been I trauma therapy for almost seven years. It has been a difficult journey. I have learned a lot about the shattered parts of myself and learning how to reunite with those parts. So much sadness, fear, and loneliness. The anger was there, too, but subdued. I wasn’t allowed to be angry growing up. I was taught to fear anger. Over time, I learned that I anger was a defense, an injustice has occurred, and the angry part was defending me. Behind that anger was the overwhelming sadness and loss.
I have had a lot of medical traumas over the years. Five surgeries so far with the possibility of two more happening soon. One of these surgeries resulted in pelvic surgery that involved a hysterectomy when I was 28 years old. This surgery destroyed me. I was never the same. I lost my identity that day. I no longer felt like a woman. I didn’t know who I was anymore.
My mother had taught me that I was a woman because I menstruated and could have children. My whole life had been defined around being a mother of some type. I felt I had lost my gender. I didn’t feel like a woman anymore. I felt broken and useless. I felt I had no purpose anymore. Suicide ideation began, but I refused to leave my children without a mother, so I carried on. Everything I did was for my children. They became the reason I got up in the morning. My career path shifted to meet their needs. I became an advocate and did everything I could to make sure they achieved their dreams. And it worked! We, the three of us, survived some dark and difficult times, and my children made it! They are adults now and they have empowerment over their own lives.
After they started college, I got remarried. I started a new life and a new job. Unfortunately, the effects of trauma have a way of popping up when you least expect it. This time I had support. I wasn’t alone anymore.
About two months ago, I fell into a major depressive episode. This didn’t happen overnight. This past year has been one health problem after another. I battled breast cancer, fibrosis resulting from radiation treatment, severe pancreatitis, liver function issues, a bulging disc in my back, and a colon that isn’t working so well anymore. I have been a runner for over 30 years. I don’t smoke, I don’t drink alcohol I don’t vape, I don’t do drugs. I have tried to live healthy my whole life. Unfortunately, I had a lot of complications from pregnancy as well as a long list of injuries from Ehlers-Danlos Syndrome.
I have chronic health problems. I have also been living in some level of burnout my entire adult life. All this caught up with me, the major depressive episode hit and the suicide ideation returned. And it seemed like I got stuck in it, so much so that symptoms of agoraphobia and fear of being in a car began.
With the help of my counselor, I was able to sit with the part of myself that was stuck. What I learned internally was this was the part that I had stuff away all those years ago. The part that I hated, the part I didn’t want anyone to see because she would not have been accepted by those around me. She would not have fit the teacher marm expectation that had been drilled into my brain. She would have been judged by my parents.
This part was dark, depressed, grieving, silent, and she was all emotion that I felt in my heart. Who was this part? She felt young, but not a child. What finally occurred to me was that she was a goth girl and she wanted nothing to do with me. This made sense. I had been so unkind to this part of myself. Since there were no words, I decided to make the reflection I saw in the mirror match what I was feeling inside.
I embraced the goth look. I have long red hair, and I dyed it a darker red with black ends and painted my nails black. My heart leapt when I saw myself in the mirror. It felt good! I feel joy now seeing myself in the mirror. i put dark makeup on and I really liked it! I looked though my clothes and realized that I already had goth style clothing. I just hadn’t combined them into a complete look. I also have five piercings – three in one ear and two in the other (piercings that I have had since I was 18). I had been wearing modest earrings over the years but collecting earrings that fit more with the goth look without realizing it.
I am still exploring this aspect of myself, but my nerves feel more settled. I feel more settled. I am not this prim and proper person who conforms and submits. I am a not a frumpy looking teacher marm. I want to spin and dance and run through the trees. I want to look dark and magical because I feel this inside.
I graduated high school in the early 90s and I graduated college in 1998. This time of high school and college is when people typically explore who they are. This was a time when it should have happened to me, but it didn’t. Yes, I am developmentally delayed but not developmentally stopped. My personal development continued even though I suppressed it on the outside in order to survive in a world that would not have accepted how I was developing inside.
I think I have always liked the goth look and gothic things. I like tight clothes and flowing sleeves. I love high boots and silver jewelry. And I like puffing up the volume of my long hair and I can do it without hair spray! But I suppressed all these aspects of myself. I didn’t allow myself to enjoy life for me. It was always about taking care of other people and making sure they felt comfortable.
I think about how I look in the mirror now, the vibe is a blend of gothic drama, 90s angst, and witchcraft. I see it as focusing on self-expression and dark femininity. This is me, the playful crafty me. This feels right and this is not coming from anyone else nor from expectations from a teaching position. I am in a job now that encourages personal choice and self-expression while remaining professional looking.
How do I define myself now?
I am out in the open. For those who keep asking “What is a woman?”, screw you. You have no right to tell me how I should be. You have no right to tell anyone who they should be. A woman is whomever she wants to be. The same goes for a man as well as anyone who considers themselves queer.
How do I define myself now?
I am me. I refuse to dull myself for another’s comfort. I refuse to abide by other people’s personal standards and expectations. This is me!
Before I changed my look to match how I felt on the inside, I wrote to that part of myself:
To the girl that is sitting next to a stream under a tree, I want to get to know you. I don’t want to push you, though. Let’s do this at your speed. I am here. I am paying attention. I know that you don’t trust me. I understand that I haven’t been nice to you. I didn’t listen. I want to listen now.
What colors do you like? How do you want to dress? How do you want your fingernails to look like? What shoes do you want to wear? I want you to see yourself in the mirror. I know you are scared, I am, too. This is new for both of us. There is no rush. One step at a time.
What do you think about black lipstick? I want to try it, at least a little, maybe add a little dark red? What about black or dark sparkly nail polish? We can do this now.
Batty by Shel Silverstein
What about little bats? Cute little bats? Long flowing sleeves? Dark colored clothes? What do you think of dark lace?
I am here by another tree just out of sight listening to the stream running over the rocks and the breeze through the leaves. I am here. Let’s make our face the way you want.
What if just being is our purpose? Just existing and taking up space? Let’s take up some space. Fill the void with whatever we want. What can we use? What do you want to fill that space? This is your time now. I know you are scared. Let’s get a friend.
By “friend”, I mean a bat ring. A shiny cute bat ring that wraps around our finger to keep us company.We need a Batty in our life.
Content Warning: Referencing cancer, suicide ideation and death.
When you are discussing cancer treatment with your doctor, you are told to expect fatigue, nausea, and a variety of other symptoms depending on what type of treatment you are needing. How this treatment affects the body depends on the person. And the person has no real way to accurately predict and prepare for how all this is going to play out. There are so many variables in play – age, type of cancer, types of treatment, sensitivity to treatment, co-existing conditions, level of burnout at time of diagnosis, level of support at home and at work, type of job, and all the other responsibilities that a person might have in their lives.
I am now on the other side of treatment. I was lucky. My cancer was discovered early during my first mammogram. The carcinoma was about the size of a grain of rice and contained inside a milk duct. Even though I had two lymph nodes removed that were very close to the carcinoma, it was learned that cancer cells had not traveled into those lymph nodes.
Due to the type of cancer and how small the growth was, only three weeks of daily targeted radiation were recommended. No chemotherapy was needed, and I opted for a lumpectomy leaving a scar along the edges of my areola and one higher where the two lymph nodes were removed. My surgeon did an amazing job of maintaining the shape of my breast.
I was lucky and fortunate that the cancer center was willing to work with me on payments because my insurance only covered so much. The genetic testing was completely covered, which I am grateful. Fortunately, I do not carry any genetic markers for cancer. We do not know why I developed breast cancer. It just happened.
Unfortunately, I was already in burnout when the cancer diagnosis was made. I have written many times about burnout and what it can do to an autistic person. I have struggled with some level of burnout my entire adult life. I also have a long history of physical health problems that have fed into my mental health challenges.
I knew the fatigue would hit hard and I thought I would be able to manage it like I have through my other medical traumas. I was wrong.
For me, the fatigue gradually increased over the weeks and months following surgery and treatment. This is the type of fatigue that doesn’t get better with sleep. It wasn’t just the cancer treatment; it was the fibrosis that developed halfway through the radiation treatment. It was also the severe pancreatitis that I had two weeks after surgery that resulted in a four-day hospital stay. It was learning that I had been having issues with my pancreas for years and that I now have a chronic condition with my pancreas, something that will never be cured, only managed. It was also the daily nausea and the loss of appetite. It was the daily dizziness and the vertigo. It was the lack of sleep and the growing number of intense hot flashes that sent my heart racing and anxiety spiking. My body thought it was dying.
I am now three months post-radiation treatment, and my body is still reacting like it is dying. My sensory system is overwhelmed, and my body is exhausted. I have no tolerance left, no energy for coping skills, nothing left for my mask, and I learned over these past two days that I have additional medical problems resulting from pregnancy complications and trauma from childbirth that happened over 20 years ago.
My son survived. He is healthy and doing well. That is what matters most. My body gave everything it had to keep him alive and keep me alive in the process. I never fully recovered from the experience. Today is Wednesday and I am having a stat MRI first thing tomorrow to determine if I have something called cauda equine syndrome (CES). CES is medical emergency that occurs when the bundle of nerves at the end of the spinal cord (cauda equina) is compressed.
All my symptoms point to CES, but it might not be that. I also have additional rectal and colon problems happening at the same time that probably is all connected to my past medical trauma. I have so much damage in my lower spine and pelvic area that it is difficult to separate things out. Here is more information about my lower spine and medical trauma – The Volcano is Awake.
I chose the name of my blog for a reason. “Autism unfurling” refers to the process of unmasking, where an autistic person stops hiding their authentic self and begins to live more openly. For the past seven years, I have been in trauma therapy. I have been working really hard on piecing myself back together and reconnecting with my emotions.
I was shattered as a person starting at a very young age. I learned to mask as a way to survive. This masking was instinctual. I had no idea and no understanding of what or why I was masking. A child masks in order to cope in an environment that isn’t safe for them to just be who they are.
My home life was not safe for me to be openly autistic. I wasn’t diagnosed until I was 36 years old after both my children were diagnosed. I was an undiagnosed autistic child that fell through the cracks living in a society that, at the time, didn’t think girls could be autistic, at least, not autistic like me. I was called other things – quiet, controlling, stuck up, rigid, weird, and that it was like hugging a tree when my mother would ever hug me. The home I grew up in was unpredictable and scary. There was so much yelling and lack of structure.
I carry a lot of grief in me, grief that I never had the chance to properly process. I had been told that my feelings were ridiculous, that I should just “get over it and move on”. I was gaslighted, emotionally neglected, and denied the space and time I needed to feel what I needed to feel. Those around me were uncomfortable with my emotions, so I hid them away. In doing so, I was chastised for not expressing my feelings that same as those around me. I wasn’t “feeling” like everyone else. I wasn’t partaking in societal norms and expectations. I wasn’t putting on the show that those around me expected me to.
My mind started dissociating while my age was in the single digits. I lived outside my body for much of my life while people around me called me stoic, broken, unfeeling, and even questioned if I had feelings. I felt it all and my body retained the memories. I have had reoccurring nightmares since I was 11 years old. A person’s body remembers trauma even when the person’s brain builds walls as protection.
Now add all this to ongoing medical problems. I was born with Ehlers Danlos Syndrome. I have lost count of how many injuries I have sustained over the years. I have had five surgeries trying to repair damage. I have had two organs removed and a part of another. I have been through physical therapy 12 times since I was 14 years old. I have no idea how I am still able to run like I do. For over 30 years, I have been a runner. I grit my teeth through the pain and keep going. Think Dory from Finding Nemo – “Just keep swimming, just keep swimming.”
When I received the cancer diagnosis and learned what the treatment was going to be, I thought I could just keep swimming, just like I have always done. I tried. I really tried. I kept pushing myself, telling myself it will get better, I just have to hold on just a little bit longer. I told myself I could keep going, working like I was, maintaining my home like I was, exercising like I was, but I was wrong.
The suicide ideation hit in the beginning of October. I like to binge watch mystery shows. During one of my binging sessions, I started thinking that death looked so restful. I just wanted to rest, really rest, and death seemed like a reasonable way of being to do that. I recognized what was happening and told my counselor and my med manager. My whole care team had been telling me that I needed time off, but I had used up all my PTO and sick time for the surgery recovery and the time I ended up in the hospital with pancreatis. I had nothing left to use and I couldn’t afford to take nonpaid time off.
The thought of taking Paid Family Medical Leave (PFML) felt so icky to me. My brain was saying I had responsibilities, and I was afraid of not being busy and not knowing what was happening at work. This is my hypervigilance talking, something I developed over time to protect myself from the unsafe environment I grew up in.
I had to really sit with myself and be realistic. There is exhaustion and then there is the exhaustion that I have been experiencing. The exhaustion I have is the type that brings you down to your knees, weeping and begging for relief. Yet, I remained standing. There is war happening inside me right now. One part is begging for me to collapse and submit. It wants me to give up, crawl into a ball on the floor in a corner and completely shut down. It wants to cease to exist, it has nothing left to give. The other part is saying “hell no” and reaching for anything to keep me standing and moving forward. It is refusing to give up. Just keep swimming, just keep swimming. Must never give up!
My grief feels trapped between these two parts, a built-up monster that will lash out at anyone and anything is if I don’t contain it. My grief has grown so large that I am afraid of it. I am afraid of exposure. I have masked grief for so long that the exposure of what is underneath that mask is terrifying to me. I am afraid of the person that is under that mask. I am afraid of an uncontrolled me, the unleashed me, the unregulated autistic me.
I grew up in a house that taught me that unregulated emotions were dangerous. I learned early on to manage my parents’ emotions for them in order to keep me safe. I don’t want to be like my parents. I know logically that I am a different person from them. I also know that I am a product of generational trauma. My parents never dealt with their trauma, but I have been dealing with my own. I know I need to openly grieve with the help of those around me, people that I trust and feel safe with.
My counselor has told me that grief is meant to be shared and processed with others, so we don’t feel so alone. How we each carry grief is each person’s individual journey, but telling your story helps lessens the weight of that grief. I wish society as a whole understood this and supported it. Telling someone to just “get over it and move on” helps no one. A person can’t move on until they have processed the trauma and the grief associated with it.
I have yet to accept the label of “cancer survivor”. I haven’t given myself time to even properly process what has happened these past eight months. It has been a whirlwind. I understand that there are societal norms in play that have people thinking that the best way to support a person going through something like this is to tell them that they are “strong”, that they will make it and that it is about having a positive attitude or telling them they need to rest, like that is something they can just make happen.
I didn’t and still don’t want to be called “strong”. I already know that I am strong. I have survived for 50 years through trauma that I wouldn’t wish on my worst enemy. This isn’t the first time I have struggled with suicide ideation. I made peace with death a long time ago. Death doesn’t scare me. All the additional medical tests and possible future surgeries that I am facing right now do scare me. I am scared of the pain that never fully goes away. I am afraid of being a burden on my family. I am afraid of losing myself to trauma. This has happened before, and it took me years to build myself back up again.
My grief and exhaustion are screaming to be released out into the open. My mask is slipping. I don’t have the level of control I once did. This level of control has been whittled down partially by choice and through trauma recovery. Being in such a high level of constant hypervigilance is not living and I want to live. The intensity of the exhaustion and sensory overwhelm has also whittled down my level of control faster than I feel comfortable with. The suicide ideation shows this.
I made the decision to take some PFML. My state allows for up to three months. I chose four weeks. This is hard for me. When the caregiver needs care, who cares for the caregiver?
“Caring for others requires caring for oneself.” – Unknown. It is time for me to care for myself. This means I need to lean on others for support, not something I am very good at. This is something that I am learning as I go.
The main message of Finding Dory, the sequel to Finding Nemo, is about acceptance and embracing differences, particularly focusing on how a disability can be a unique strength and that people with different abilities have a place in society. The movie also includes the message of the power of family and friendship, the importance of courage and perseverance, and the idea of trusting your instincts. There is also the message that asking for help is not a weakness.
Much like Dory, I have a condition that makes it difficult for me to navigate challenges alone. I need to trust those I have chosen to surround myself with and listen to my instincts, which are telling me that I need to take time for myself. This time off is not selfish and it is not dangerous. This time is necessary. Even fish have their version of rest.
The song “This Woman’s Work” by Kate Bush has always hit me hard. Today, as I write this, the song hits me even more. I still have work to do.
As with most songs, there is story behind Billy Joel’s song “We Didn’t Start the Fire“. The idea spawned from a conversation Billy Joel had with a friend of Sean Lennon who had just turned 21. The friend of Sean Lennon said it was a terrible time to be young. The friend believed the 1980s were particularly difficult and that the younger generation was unfairly burdened by the baby boomers’ mistakes. Joel, who had a similar feeling of overwhelming change when he was young, decided to list the historical events of his own life—from his birth in 1949 to 1989—to show that every generation faces its own crises.
These are Billy Joel’s words: “I started doing that as a mental exercise. I had turned forty. It was 1989, and I said, “Okay, what’s happened in my life? I wrote down the year 1949… It was kind of a mind game. [It’s] one of the few times I’ve written the lyrics first, which should be obvious to why I usually prefer to write the music first, because the melody is horrendous. It’s like a mosquito droning. It’s one of the worst melodies I’ve ever written. I kind of like the lyric though.” – Passage taken from the book, In Their Own Words by Bill DeMain (Chapter 14) where he interviewed Joel about his thoughts on the song.
The song’s message: The title and lyrics argue that history is an ongoing, cyclical process of conflict and change, and that the “fire” of the world’s problems has been passed down through generations.
How it was written: Joel, who once wanted to be a history teacher, created a rapid-fire list of over 100 cultural and political headlines from 1949 to 1989, presented in roughly chronological order.
Examples of references: The song includes a mix of political events (e.g., “Korea,” “Suez Canal,” “JFK”), cultural figures (e.g., “Marilyn Monroe,” “Liberace”), and social phenomena (e.g., “H-bomb,” “vaccine,” “Rock and Roll”).
Impact: The song became a #1 hit and is often praised for its educational value in providing a timeline of the late 20th century.
I turned 50 years old in June. I am not sure what 50 years old is “supposed” to feel like because I have never been here before. I have five decades of experience living on this planet. I have traveled around the Sun 50 times!
So much has happened during my lifetime. At the time Joel released “We Didn’t Start the Fire”, I was a freshman in high school. MTV was still a thing and still showing music videos. I was fascinated by the song and the video. I often thought about what the future would look like based on how the song and music video ended.
It has been 36 years since the song was released, almost as old as Billy Joel was when he wrote the song. In the song, my timeline starts three lines down in Verse 6 (see red arrow):
Birth control, Ho Chi Minh, Richard Nixon back again Moonshot, Woodstock, Watergate, punk rock –> Begin, Reagan, Palestine, terror on the airline Ayatollah’s in Iran, Russians in Afghanistan “Wheel of Fortune”, Sally Ride, heavy metal suicide Foreign debts, homeless vets, AIDS, crack, Bernie Goetz Hypodermics on the shore, China’s under martial law Rock and roller, cola wars, I can’t take it anymore
The song then ends at this point with the chorus and the outro:
(Chorus) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire But when we are gone It will still burn on, and on, and on, and on, and on, and on, and on, and on
(Repeat three times) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire No, we didn’t light it, but we tried to fight it
The use of “We didn’t start the fire” represents the ongoing, unresolved problems and crises of history that each generation inherits. The song uses this “fire” to argue that no single generation is to blame for the world’s troubles, as conflict, scandal, and change have been “always burning” since the beginning of time.
The same year this song was released, the Berlin Wall came down. The dissolution of the Soviet Union would happen two years later, and the Cold War between the United States and the Soviet Union would officially end. I remember all of this.
My children never had to grow up with the threat of nuclear war. Between the release of this song and the end of the Cold War, the Americans with Disabilities Act was signed into law. My children have never lived in a world that didn’t have a comprehensive disability rights law.
Roe v. Wade, 410 U.S. 113 was established two years before I was born. I have lived my whole life having more rights than my daughter currently has. What else has happened in the 36 years since the song was released? As a Gen Xer, this is my contribution to the song starting with my timeline.
(Verse 1) Ford pardons Nixon, Carter gets elected, hostage crisis in Iran, Reeve becomes Superman Margaret Thatcher, Magic Johnson, Larry Bird, Bill Gates, Windows 1.0 Reagan wins the White House, Justice Sandra Day O’Conner, Thriller dances in the street Walkman, headphones, compact disks, personal computers
(Verse 2) Sadat assassinated, “Just Say No” is all the rage, AIDS gets identified, nothing like Nintendo Reagan meets Gorbachev, discovery of the Titanic wreck, Star Wars versus Star Trek Live Aid concerts, David Bowie, Elton John, Freddy Mercury, greatest live show in history George HW, Berlin Wall comes down, Hubble Telescope, ADA, Microsoft, war in the Persian Gulf
(Chorus) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire No, we didn’t light it, but we tried to fight it
(Verse 3) Ryan White, Princess Diana, Spielberg, flip phones, rise of the internet Madonna is like a virgin, Alanis gets irony wrong, Nirvana brings the grunge Spying Furbies, AOL messenger, Doc Martens, everyone has pagers Clintons in the White House, infidelity in the news, “Don’t Ask, Don’t Tell”, Brady Act George Jr. gets elected, 9/11, War on Terror, War in Afghanistan, War in Iraq Execution of Hussein, Hurricane Katrina, Housing market crash, No Child Left Behind Act Patriot Act signed, creation of Homeland Security, shoes in airports, formation of the TSA Bluetooth, iPods, camera phones, Twitter, Facebook, YouTube
(Chours) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire No, we didn’t light it, but we tried to fight it
(Verse 4) International Space Station, USB flash drive, Amazon Kindle, 3-D printing, GPS Obama wins, Affordable Care Act becomes Obamacare, LGBTQ+ rights, ended War is Iraq Death of Bin Laden, Sandy Hook Elementary, DACA, climate and energy Iran Nuclear Deal, Paris Agreement, Birther Movement, rise of Trump MAGA is born, Trump gets elected, Muslim Ban, travel ban, boarder wall Trade War with China, Russian election interference, Pandemic office closed Government shutdowns, Trump gets impeached, COVID-19 pandemic, vaccines Unemployment is on the rise, SpaceX Dragon, Marvel, Justice Ruth Bader Ginsberg dies
(Chours) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire No, we didn’t light it, but we tried to fight it
(Verse 5) Biden gets elected, Unity agenda, January 6th Insurrection, Trump gets impeached again Harris becomes first female VP, Trump convicted of 34 felonies, MAGA becomes a cult Investing in America, ended war in Afghanistan, Juneteenth, ChatGPT, Elon buys Twitter Artificial Intelligence, James Webb Space Telescope, George Floyd, Black Lives Matter Bushfires in Australia, Russia starts war with Ukraine, Zoom, death of Queen Elizabeth II Overturning Roe v. Wade, world population crosses 8 billion, Charles III becomes king
(Chours) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire No, we didn’t light it, but we tried to fight it
(Verse 6) Mass shootings, Titan submersible, Baltimore bridge, misogyny, Trump elected again Jimmy Carter dies, Trump pardons all J6ers, transgender women banned, DOGE runs amok Racism, tariffs, Heritage Foundation, Project 2025, end of USAID, fascism is on the rise Russell Vought, Steven Miller, Peter Thiel, DEI, brain-drain, TikTok challenges Attacks on Medicaid, SNAP, immigrants, disability, and Department of Ed Government shutdown, tax breaks for the rich, loyalists, sycophants, plane from Qatar Gaza, Israel, Antifa, National Guard, mass deportation, trade war with Canada Protests, ICE throwing tear gas, families being torn apart – I just want it all to stop!
(Chorus) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire But when we are gone It will still burn on, and on, and on, and on, and on, and on, and on, and on
(Repeat three times) We didn’t start the fire It was always burning, since the world’s been turning We didn’t start the fire No, we didn’t light it, but we tried to fight it
Something changed as I was writing. Part 1 and 2 were originally written together all in one sitting as one single essay. As I was typing, processing was taking place and there was an unconscious switch in how I was expressing myself. Something else emerged halfway through. I decided to split this blog into two parts.
I want to dance. I want to feel free to move my body as it needs to without judgement. I want to know, truly know and believe, that I won’t get yelled out or shamed for just being me. I want to feel safe expressing my emotions in the manner that makes sense to me without people accusing me of something that isn’t happening. I say what I mean and mean what I say. There is no hidden meaning, no words between the lines, no need to assume something that isn’t there.
Me stating something is happening does not mean I am being critical of it. I am simply stating something is happening, something I observed. Me saying I see a pattern of behavior is not me being critical. It is me stating that, “Hey, I am seeing a repeated pattern of behavior that is happening during such and such. This is resulting in such and such. Can we problem solve together?”
Me talking about something that I am passionate about and using the words associated with that thing is not me talking down to a person. Me addressing misconceptions is not me being judgmental. I have three college degrees, two of which are advanced degrees. I not only have the knowledge about the things I am passionate about, I also have the experience of working in the area I am passionate about. Long story short, I know what I am talking about, and I use language that is direct with very little to no space for ambiguity to show respect to the other person.
When I ask for clarification, this is not me being insulting to the other person. I truly need clarification. I don’t want to make assumptions, and I don’t read between the lines. I am a literal thinker, and I am very observant of nonverbal cues. I want to make sure I truly understand the best that I can.
How does this make me a “monster”?
I often wonder what my early life was like. Was I stereotypically autistic? Did I have meltdowns? Did I stim a lot? What was going on that made my parents think I should not be who I was?
I feel this ache in my chest of a loss of a childhood, a loss so great that resulted in me as an adult to be terrified of letting my mask down and preventing me from releasing the tension in my body. There is this internalized belief that it is unsafe for me to just be, that everything will come crashing down if I dare be that person who was denied existing.
My body tells me that I need to move my arms and hands outward and around flowing with the rhythm of the natural world and my legs to sway back and forth, eventually my whole body spinning with the Earth.
This feels natural to me. Why is a still body seen as the acceptable way to go about your day? Why do parents think it is okay to hold down the arms of their child and tell their child they are embarrassing them? The world should be embarrassed for thinking being different was somehow wrong and then allowing this belief to be passed down generation after generation.
Why is someone like me needing to conform to a world who doesn’t understand and tries to force compliance into predetermined boxes?
I understand the need to certain societal norms, such as following safety rules, being kind, following directions for an assignment or a project, meeting the requirements of a job, adhering to the policies and procedures of an organization, and following laws and regulations.
There are unspoken societal rules that only some understand and adhere to. Why are these unspoken societal rules pushed on to everyone else? Who decided gender roles were explicit? (SIDE NOTE: Gender roles are not explicit.)
I am a 50-year-old autistic woman who wished she had a house big enough to have a Nerd Room. I want to display my collectibles which are currently in boxes. I want to display my She-Ra figures that I was shamed into getting rid of as a teenager.
Yes, I went to Ebay and found the figures that I once had. I want to display the Transformers and all the Hot Wheels and Matchbox cars that I have. I want to display my rock collection and my plasma ball along with my solar system models. I want shelves for all my books. I want to get a record player and find all those records that I grew up with. YES! Actual records! There is a sound quality in records that you can’t get with digital recordings. I want a swing in my house. I want a sunroom connected to my Nerd Room where I can fill with plants and places for my cats to climb.
Having these two rooms would be amazing and healing for me. Unfortunately, I am not rich. I live in a rental that is one-half of a duplex. This is what my husband and I can afford. So, we make do.
Do I sound like a “monster” for having interests that are outside the norm of what is expected for a 50-year-old woman?
Internalized ableism is a real thing, and I carry quite a lot of it. I don’t want to be seen an incompetent or incapable. I want to be accepted just like everyone else, but I don’t want to have to hide who I am just to be accepted and seen for the skills that I have. Having to hide in order to be accepted is not true acceptance.
Our society has taught autistic people that they need to be indistinguishable from their peers while telling everyone that it is important to be yourself. So, which one is it? Be indistinguishable or be yourself? You can’t have it both ways. Or, are only nonautistic people allowed to be themselves?
Logically, I know that I never really was a “monster”, but those parts in me that were harmed don’t buy it. These parts are still in the past trying to survive. These parts are what is triggered when a man yells or gets too loud or when I am in a meeting with mostly men. These parts are what is triggered when my body feels like it did back then, when I don’t feel safe, and when people talk down to me or dismiss what I am saying. This happened way too much growing up.
As an adult, being dismissed out of hand or being talked down to results in me feeling anger. This is an emotion I was taught was dangerous, unsafe, and wrong. In reality, anger is just a feeling like any other feeling. Feelings are neither right or wrong. They just are. I have every right to feel anger. How I express anger is what matters. Growing up in a home full of unregulated and unpredictable anger caused me real, life-long harm.
Being autistic doesn’t make me a “monster”. Trying all these years to hide who I am only fueled internalized harmful beliefs and created a “monster” that is full of emotions of a young child who desperately wants out but has no anchor to the current world.
The belief I carry is that the current world is not safe for someone like me. So, I tell the stuck parts of myself that I want to show them what the outside world is like now that I am an adult. I tell them that they are not alone and that we are going to do this together. I tell them that the scary people that were always around are not here anymore. Really. The scary people have no real power anymore. I tell the parts that they are loved and wanted and seen and heard.
To dance is to be free. To move as I need to, as all my parts need to, out in the open little by little, allowing everything within me to come together in the flow and ebb of the harmony of the music within me.
I am no “monster”. There is no “monster” within me. There are grace, kindness, and empathy. There are also boundaries and self-determination. To hold all this does not make me a “monster”.
To just be, for me, means to dance as I need to in the open without judgement.
Something changed as I was writing. Part 1 and 2 were originally written together all in one sitting as one single essay. As I was typing, processing was taking place and there was an unconscious switch in how I was expressing myself. Something else emerged halfway through. I originally wrote this first part entirely in third person. That also changed as I was writing, and I ended up going back through this essay and switching third person to first person. In doing so, I decided to split this blog into two parts.
I have been wondering how many late diagnosed autistics grew up believing that they were monsters and were fearful of themselves.
Imagine growing up in a house where generational trauma played a huge role in how your parents lived their lives. Now imagine that one parent yelled all the time, was emotionally unregulated, and emotionally avoidant and the other parent was a co-dependent, emotionally unregulated, and emotionally needy. Inside this dynamic lived an undiagnosed autistic first-born child who had behaviors and mannerisms that her parents did not understand and were uncomfortable with. The child loved to run, dance, and wiggle. She lived in her senses and experienced her world through her imagination.
Control and forced compliance were used on this child to make her seem like everyone else. Think Applied Behavioral Analysis (ABA) without having a behavioral specialist involved or the parents having any understanding of trauma-response or the need for routine and structure.
Growing up as a GenXer, I was taught to ABA my emotions out of myself without understanding what that meant and that has followed me to this day.
Having experienced the unpredictability of my parents and all the yelling from those who were supposed to take care of me, I developed the fear of death if I didn’t comply. I also learned at a young age to always be vigilant in doing what I could to keep my parents calm. I was essentially parentified at a young age.
I grew up organizing my room and organizing anything dealing with school because those were the only spaces where I could create routine and structure in my life. I was not allowed to say “no” and didn’t even know how to until I was a parent myself.
I had no “voice” because shame was used to control me from a very young age. I was taught I was a “disappointment” and that experiencing emotions that way I did was somehow “ridiculous” and “wrong”. I felt I needed to be a tiny mouse in a corner just so I could survive. My body told me to hide under tables, be quiet as possible, and go unnoticed so that the yelling and shame would not be directed at me.
This little mouse was not who I really was. My body demanded to move to music only I could feel, a feeling in my body that needed to be expressed, and a nonverbal way to experience my world. I grew up wanting so much to be seen and understood, but how do you explain a way of existing that is nonverbal?
Instead, I tried to conform and be as I was told so that I could belong, but it never really worked. I met all the requirements, filled out all the paperwork, went through all the interviews, attended all the meetings and all the classes, and agreed to things because I thought I was supposed to. Parts of me were left behind as I tried to be as I thought I was expected to be.
As an adult, I learned to use my “voice”, but with great struggle. During this struggle, I was diagnosed with Autism. A whole world opened to me that I had no idea existed. I discovered I was not broken. Yet, that early conditioning of the message that I was “monster” in some way kept me trapped in this bubble of hyper vigilance.
I had been compared to my father for too long, even though I never felt like I was like him. He was scary and always yelling. He did not feel safe to be around. He ranted and said hurtful things. His behavior made me finch like I was hit. I was never like this, so how could she be like him? This always confused me.
Any time I asserted myself in some way, my close family members would compare me to my father and accuse me of being aggressive. While this was happening, I was expected to be the calming force for my mother. I was expected to be emotional support to my mother who wanted me to feel just like she did and let her do what she wanted regardless of my wishes. None of this made sense, but I did what I could to be part of the family.
Finally having an Autism diagnosis helped me find a path that would eventually lead to trauma therapy. Complex-PTSD, it was called. A lifetime of living in an environment that was harmful as well as having a first husband who was a combination of my parents.
No one wants to be called abusive. So, when I approached my family about the situation, of course they denied it. This only led to me feeling pushed out of the family. I rocked the boat, I didn’t stay quiet, and I started coming out of my shell – the very thing my parents had repeatedly told me that I needed to do while I was growing up. They would say, “Come out of your shell” whenever I asked how to make friends or how to not feel so lonely. Apparently, coming out of that shell meant coming out the way they wanted me to (which was never explained), not the way it ended up happening.
The person who came out of the shell was an autistic person who wanted to be seen and accepted. I didn’t want to be hurt anymore. I didn’t want to hide anymore. I wanted to learn to be my authentic self, but first, I needed to learn who that authentic person was.
Growing up, I was not allowed to be myself. This meant who I really was never got a chance to grow with me. As an older adult, I learned what it meant to be autistic as both my children were learning what it meant for them who had also been diagnosed.
Through all this, that belief that I was a “monster” still lingered. Being myself was not safe. I continued to be trapped in a bubble stuck in the past, much like my parents had been stuck in their own generational trauma. I had inherited a long string of beliefs that were not my own.
How many late diagnosed autistics were raised to believed they were a “monster” for just existing?
Autism Unfurling (Formerly The Aspie Teacher) 