Dear Essence, age 29:
You had to completely transform your life after Richard. That initially started with throwing yourself into work, business as usual. That began to run you down, so you just whined, cried, and shook instead.
Then you begin to purge it all out. The cleansing feels so good; people listened to you because they wanted to. Not because they were going to get something from you at the end of the day, but because they genuinely gave a damn about you and your wellbeing.
When that became too much, you noticed how your body felt after you listened to certain songs. How they brought up the little five-year-old girl. Songs that made you want to cry and yell or flap your arms wildly.
Sometimes that trauma runs a bit too deep. You would just… hide. Underneath your music, in your notebooks and journals. The gift that Elder had given you.
There are songs that made you want to withdraw in your shell and never come out. There are songs that brought the rage of a thousand thunderstorms descending all at once. You couldn’t take it
So, you had to go in and remove those songs.
What a task.
I began noticing the way certain songs made me feel during the summer of 2020, my first summer in Gaston, North Carolina. My first summer away from everyone I loved or cared about. I now had time to reflect on my life in earnest. How had I gotten here: a six-inch butcher knife aimed at me, countless men desperately seeking pussy, and the kindness of my ex’s family? None of it made sense, in the same way that I received SSI (Supplemental Security Income) in 1994 for a “learning disability,” being a “slow learner.” Bullshit. What was I learning in 1994, when I was three years old?
None of this made sense—not the kindness of my ex’s family, not the diagnosis I received at age three that everyone constantly told me was a “learning disability.” “You learn slower than your classmates,” Mom always said. “But you can do the same work as them.” I came home with work a second grader could do.
In 2021, I learned that I am on the autism spectrum while in a psychiatric hospital. Finally, a different story, and one that made sense. So, Dad was right.
In 2005, my dad visited my mom, siblings, and I in the motel room in Lawrence Township, New Jersey. I was talking about a boy in my math class who was on the autism spectrum who I thought was cute and who I wanted to ask to accompany me to an upcoming dance. He could not pronounce my name (most average people cannot pronounce my name), and he was slow to respond sometimes. He had an aide, but he was an extremely sweet boy.
When I mentioned that he had autism, I had gone quiet, letting the discussion flow. My dad then said that I had autism.
“No, she doesn’t,” Mom said. “Essence has a learning disability.”
The room went very silent. Even at age fourteen, I took that as a silence that meant, “She was not supposed to know that.”
The conversation continued awkwardly. I had always been a very bright student, making A’s and Bs with little effort, but I was a reticent, even introverted student, not interacting with students much, if at all. Previous IEPs (Individualized Educational Plans) I have read stated to the effect that teachers and staff would love to have me come out of my shell more, but I was a pleasure to have in class because I participated well.
Today, I struggle with socialization. I do not make good eye contact. I stim frequently, a classic autism trait. Providers have told me that I hold my hands awkwardly. I have poor eye contact. I do not do well with loud noise, and in elementary school I wore headphones during recess to block the sounds of other children playing. I cried at the loud noise. Today, I continue to use headphones to buffer sound around me.
In Mercer County, New Jersey, no one around me told me much about autism. Social workers and various volunteers suspected that I was autistic when they first met me.
This news makes me angry. If there were so many people who suspected it, why didn’t any of them press me for more information, or ask my mom to get me evaluated officially? The phrase “learning disability,” in my case, was intentionally vague: just the way my mother wanted my life to be. The less Essence knows, the better. So, keep repeating that she has a learning disability and soon enough she’ll believe it.
In 2020, in the months after the Incident, I felt like I was going to explode. Everything was off, but I managed it. I felt like I was just living from one day to the next, but something in me was changing. The food I was eating was healthier; I ate oatmeal enough for a family of four (and Elder had to tell me to stop doing that, but she was glad that I was eating oatmeal), salads, and vegetables. I ate what was in front of me without complaint. When was I going to eat again? Was I going to eat again? Would there be food in the fridge tomorrow? In two hours? In thirty minutes? Best to eat now and have more just in case.
On the heels of moving to North Carolina, I subsisted on a diet of fast food, greasy food, and plain stuff that makes me horrified today. McDonald’s was the name of the game. I couldn’t cook, and because I was having regular meltdowns, Richard thought it was best that I did not cook. When Richard began his dialysis sessions, we began getting take-out and delivery: Chinese, Domino’s Pizza, anything we could get off Grubhub, Door Dash, ChowNow. All of it quick, fast, and in a hurry. Prior to that, I lived off sandwiches, fried food, hunks of meat, and hot dogs daily for years. To this day, I cannot and will not eat hot dogs. I get squeamish when family, friends, and social gatherings offer pizza to me. I can control a salad. I cannot wield an entire pie of pizza. That is how I grew up. I am trying not to repeat this.
As I sat in the library building on the King homestead, I contemplated my iTunes library. Which songs to delete? I began scrolling on my phone: which songs do I need? Which songs do I listen to? Which songs should I listen to? I opened my laptop and looked at the frequency certain songs had been playing.
Tens of thousands. Hundreds of thousands.
That means that I wallowed in the depths of hell in my waking hours, in my sleeping hours, as I wrote, as I ate, as I slept…
Damn. No wonder I was so damn morose and depressed.
Then I began thinking about the music I was replacing my current modus operandi with. Jazz. Spa music. Ambient tones. Binaural beats. New, better, R&B. Anything else than this doom, gloom, depression, and suicide. That is no longer who I am going to be.
I slowly began to clear out the iTunes library.
When I received the autism diagnosis, things began to make sense—like my lack of tolerance to too many sensory stimuli. Autism Spectrum Disorder (or some variation thereof) would have likely been the diagnosis I received from the Social Security Administration and any doctor my parents took me to see to begin receiving SSI benefits in December 1994 (according to my Benefits Planning Query received in 2021 as I spoke with a Benefits Counselor about options for SSI beneficiaries returning to work).
But autism is a spectrum, and it is an intellectual and developmental disability, but I do not think I should have been in special education classes where I was doing second grade math in the fourth grade. Then again, less was known about autism in the 1990s and 2000s as it is today in 2021.
The narrative I perceived throughout my life from my family and from my educators was that no one will expect to do anything because I am disabled.
This only made me work harder. To top it off, I am a Black woman. We’re not supposed to graduate high school, but we must keep it all together, keep it cool. I refuse to wait for an SSI check every first of the month. That has never been me. My narrative is a different one: one where my family, friends, and paid supports empower me to keep moving my life in a positive direction. Furthermore, I empower others with my lived experience of being on the fringe. The stories I heard on repeat on the television were to take everything from others and try to evade capture by the authorities. Stories that showed that taking from your own family and being completely and utterly indebted to them, as if you owed your very life force to them, was normal. Fuck boundaries, my family indirectly told me.
Because of that, Richard aimed that six-inch butcher knife at me. Because of that, I learned to erect boundaries that I am not too eager to take down.
Though something gnaws at me.
Dear Essence, age 23:
The way things ended between your mom and Granny was petty. All because of a lack of money in a birthday card for your Granny one year. Then Granny died, and they never got a chance to reconcile. That… hurts. You followed your mom’s lead. Even when you met Richard, something nudged you for months. I should visit Granny. You mentioned it to Richard. He was more than happy to go with you. Didn’t want to keep you and him a secret.
“I don’t want the awkward silence,” you said, demurring. Everything would be awkward about the conversation if you timed it the wrong way. If you arrived too late, she would be pissy drunk and mean. But if you came there early in the day, she would have cooked fried chicken, rice, and green beans. There would be music in the background: Bobby Blue Bland, B.B. King. Perhaps the television would play, and a Fountain Avenue lifer would recognize you as your mom’s daughter, your Granny’s granddaughter, and you would stare and say “Yes, I am,” as you tried to place where you might recognize this person from. You wouldn’t recognize them at all. You just have that Look. That Stature. That Hair, especially, though by this point you wear a wig with pink streaks in it to cover the fact that you have not done your hair in years.
My mom, dad, sister, and I are at odds right now. I am not speaking to any of them, and they aren’t speaking to me. The biggest issue I have right now is the fact that my family knew that I was autistic for decades and yet did not tell me. Identity theft is another matter I contend with. I am rightfully angry. Knowing the proper diagnosis or diagnoses can open many doors: scholarships, improved advocacy, learning and professional opportunities. I would have received better help from social workers and other trained professionals. The years spent in the dark meant that I could not fully tap the resources available to me as disabled person living with autism spectrum disorder and mental illness.
I look to the future. I have a niece who is on the autism spectrum. She will not undergo the same fate I did. She will learn how to advocate for herself and learn about how she learns and studies from an early age. The only way out is through, and I will be damned if I watch another generation go through what I did.
I do not know how I might talk to my parents and sister again. The feelings I have are insurmountable. I know I have the power of SGI Nichiren Buddhism and Nam-myoho-renge-kyo to change the karma. I do chant. I feel less angry, more optimistic. But I want to be like Bodhisattva Never Disparaging, who acknowledges everyone’s Buddha nature. The people do not acknowledge his Buddha nature, attempting to cause him harm. Bodhisattva Never Disparaging moves out of harm’s way and still calls out (paraphrased), “You’re still a Buddha and I still bow to your Buddha nature!”
This song of resentment, lack of responsibility, and so much negativity will come off repeat.