Waving Through A Window
START HERE: This post details my life with mental illness from both mine and my mother's perspective. It was tough for both of us to write. I will not debate diagnosis or lack thereof here, because I firmly believe self-diagnosis is valid.
Having been under the care of an educational psychologist, several therapists and a psychiatrist at different and overlapping points in my life, I can confirm the merits of both self diagnosis and clinical care. For more information on how self diagnosis is valid for many people with mental illnesses and cognitive difference, go here, here, here, and here. Oh, and here.
If you know me now or ever knew me in real life, reading this post might make you confused, sad, angry, hurt, or any combination of feelings.
That's okay. You are allowed to feel your feelings.
However, this is my story to tell. So please listen.
This post contains some tough subject material and may not be appropriate for readers under 13.
"Step out, step out of the sun
if you keep getting burned.
Step out, step out of the sun,
because you've learned, because you've learned...
On the outside always looking in,
will I ever be more than I've always been?
'Cause I'm tap tap tapping on the glass -
I'm waving through a window, oh
I try to speak but nobody can hear
So I wait around for an answer to appear
While I'm watch, watch, watching people pass
Waving through a window oh,
Can anybody see?! Is anybody waving back at me?"
- "Waving Through a Window", from the Tony-Award winning musical Dear Evan Hansen, written by Benj Pasek and Justin Paul
To my best recollection, it’s been a lonely life.
I’ve always been different.
I can’t remember ever feeling like someone understood me. I’ve only ever felt different.
I don’t mean the quirky, faux-edgy, strange-but-somehow-still-conventionally-beautiful aesthetic of different that we seem to prize today.
I mean crying-when-someone-used-a-styrofoam-cup-near-me-because-the-sound-of-human-fingers-against-styrofoam-makes-my-bones-itch different.
Even as a child one is capable of having that feeling - articulating it, not so much - but having it, certainly. I remember feeling utterly alone in the world.
But it all started out just fine.
A nugget with thunder thighs. © 2017 TheBlackSwanDiaries All Rights Reserved.
Mom says I was (and I remember) reading the Washington Post with my dad at age 5. "You astounded us, intellectually, by the time you were 2 or 3," my mom said - "I put you in daycare not because we needed it, but for the socialization and the intellectual stimulation. You gravitated towards the adults, since you were more able to carry on a conversation with them."
I had plenty of friends, but it was preschool. The grounds for friendship involved only the sharing of crayons and the minimum decency not to wipe the contents of one's nose on your classmates.
The trouble didn't present itself until later elementary years, when personalities solidify and one becomes capable of discerning, however correctly or incorrectly, whether or not a person is worth having around.
I was highly intelligent, but began to struggle to make friends, let alone keeping them. I was bossy and insisted everything be done my way because I couldn’t handle change, or shifting from one assignment to the other. I had a fixated interest on a select few things, and I wasn’t really into doing much else besides those things.
I began to realize that I didn’t understand the kids around me. Instead of playing with other children at recess, I would stay inside to help my teachers grade papers. Outside was too loud and too dirty. I was extremely picky and particular about everything around me, and my books were arranged chronologically or by color or by title...but I couldn’t seem to keep my room clean. I began to feel the water rising.
© 2017 TheBlackSwanDiaries All Rights Reserved.
My family would always describe me as “sensitive”. Until recent years most Black families didn’t have the language or experience to describe or identify mental illness or cognitive difference in their children - and even though my parents cherished me and did their best to love and understand me, this lack of language affected us too.
Even my mom admitted then and admits now: "Not only are Black children routinely underdiagnosed or misdiagnosed with mental illnesses and autism spectrum disorders, but Black families also refuse to seek care based on the perceived stigma of cognitive difference and mental illness in the Black community...". Any illness that causes abnormal behavior or deviation from social norms is termed a “White person’s disease” - the ultimate silencer. If you think I’m kidding, lying or overreacting about any of this, you are wrong.
For as long as I can remember, my emotions have towered over me. We constantly advocate for showing grace to toddlers who throw temper tantrums, asserting that they are just “little people having big feelings”, but what if that dynamic never rights itself?
What if that painful relationship persists in inversion? What if your feelings and limitations grow twice as fast as you do, leaving you unable to keep up? What if you have to cover your ears to flush the toilet, because the sound hurts your teeth? What if you twitch or do strange things with your face and hands and can’t explain why? What if you’re a 12-year-old girl but you still have trouble with basic hygiene and cannot interact with your classmates and exhibit severe difficulty regulating your already-hormonal emotions?
“I’m actually still dizzy thinking about it, but the real heartache was that this was a malady I could not fix. Like most mothers, I would have given anything to trade places with her to stop the suffering. Yes, we sought out doctors, tried medication and counseling, and yes, this was all done with much reservation because for decades the Black community has been wary of any diagnosis of a mental or emotional disorder...”
My parents hugged me harder. They took me to therapists. I talked to school counselors. I talked to teachers. My parents talked to teachers. Everyone tried to talk to me. I don’t remember what anyone said to me, or what I said back to them. Notes, endless notes. Piles of books about adolescent mental health on my mom’s nightstand. Hushed phone calls. The adults in my life tried in vain to reach across the cavernous divide between us, but my pain and confusion rendered me silent - stranded at sea, my vessel capsized.
No invitations to birthday parties. Silence at home. One Bat Mitzvah invitation from the girl who invited the whole class. Lying to fit in, and failing miserably at it. No one wanted to work with me on group projects. Rejected everywhere. Made fun of behind my back. I was constantly forgetting things, but could remember random dates and song lyrics forward and backwards. Studying was impossible. Inevitably, my grades started to slip. Where I had once excelled I now lagged. My Grandmother was sick. Money was tight. My lungs filled with water.
I felt like I was drowning.
For the first time in my life, but not the last time, I felt like I was drowning. I couldn’t breathe, I couldn’t see, and most importantly, I could not swim. All the blue beneath me was slippery and unsteady, and could not bear my weight.
I have always felt as though I’m looking at the world from behind thick glass, or from the bottom of a well - hard to see and hard to hear, the barrier distorting voices and appearances so drastically that neither party can communicate. Alone at the bottom of a well, or face pressed against the foot thick glass - able to be heard, perhaps, or seen...but never both at the same time.
I imagine myself standing in Times Square, flailing and shouting. My shouts echo in a language that no one understands and my limbs cut the air like knives through still water, but no one sees me. They avoid me in the same way we tend to avoid homeless people: shamefully, knowing we should speak or help or at least look them in the eye, for God’s sake. But alas, old habits die hard. They hurry away, avert their eyes, fall temporarily deaf, and even more temporarily blind, embarrassed for us both. If they dare to turn their heads, if they dare to look at all, it is the pursed lipped smile of pity, the silent mouth wrapping around a whispered “I’m sorry”. Rarely, almost never, an outstretched hand. The occasional hint of anger or disgust. They look straight into my eyes as my cries for help fall on deaf ears.
That's what it feels like.
I felt like I was drowning.
No official diagnosis was ever given then, because the psychologist couldn’t pin down just one thing. Persistent and severe depressive mood. Extreme anxiety. Low self worth, very negative self image. Scattered cognitive deficiencies, but extremely high intelligence. Socially inept, painfully awkward, but pleasant and kind. I was different. That was certain. Medication was prescribed. Therapies scheduled. We moved states for other reasons, but not far beneath the surface my parents and I hoped for a fresh start. There was no awkward “phase” for me, just an awkward existence. I staggered, wounded, into high school. The social order there only flung more arrows.
I'm smiling in this photo, but there is so, so much pain underneath. I want to go back and hug that girl. © 2017 TheBlackSwanDiaries All Rights Reserved.
I tried to do better. I went on a school trip to New York City. A classmate called me “sick” for reading a book about 9/11 because I said I had wanted to see the photos. For the first time in my life, I put a book down. I planned a 15th birthday party at Dave and Buster’s, and invited my whole class. No one came. I actively considered taking my own life. I wrote a note. I gazed around my room and divided my possessions among those who would want them. Jewelry, books, movies, clothing. I wrote letters to the 4 people I thought would miss me.
I felt like I was drowning.
I switched schools again. Ashamed of how deeply I struggled, how profoundly different I was, and how lost I felt, I invented a new persona entirely. I learned to cover the hurt and mask the aloofness with a guise of cool bravura and type-A extroversion - always busy, the President of every club, great grades, a friend to all, a stranger to myself - a feigned confidence and knowingness that only served to distance those around me from the real me - scared, hurting, confused, ashamed, and lost.
I faked a smile and faked my own well being for years. © 2017 TheBlackSwanDiaries All Rights Reserved.
I felt like I was drowning.
I eked out an honors degree and several AP classes from high school. I looked good on paper. I spent nights crying in my bed. I went as far away as I could (read: New York) to attend college, hoping for a fresh start yet again. This time it seemed to stick.
I went to college and tried to find my roots again. © 2017 TheBlackSwanDiaries All Rights Reserved.
It was there that my wish was somewhat granted - I met people like me. Unlike me, however, they’d had access to more extensive therapy, earlier interventions...they had learned formal and informal names for their conditions, they’d been able to ascertain what coping mechanisms worked best, which medications made their symptoms the most manageable.
Where they had been able to give off an air of “normalcy” assisted by therapists, medications, and understanding communities of friends they'd had for years, I was only able to give off the same air by having buried and masked all the parts of myself that were reflective of my cognitive and emotional struggles.
Like Dorian Grey, I had spent such a great deal of time polishing the my outsides - changing the way I talked and walked, pretending to be an extrovert, excusing myself to the bathroom when I needed to stim, covering my insecurity with feigned strength and dogged defensiveness - that my heart and soul were slowly decaying from self-neglect, from disloyalty to my own essence, from the every day toxicity of militant self denial.
I felt like I was drowning.
I was astounded and, briefly, extremely angry. They had been afforded the healthy, supported route to functionality, while I had struggled alone just to copy the “normal” behaviors of those around me and appear functional. I had left people, relationships, and my own heart in ruins due to my own inability to interact and cope socially and emotionally - because therapy was expensive and we could only afford so many sessions. By that time, those sessions were 10 years past.
I thought back at what my life could’ve been if I’d had the same access, the same privilege...I could’ve had friends. I could’ve had grades that more accurately reflected my intelligence. I could’ve been able to name my struggle. My life could have been easier. I could’ve felt better about myself. I could’ve felt supported and understood. I could’ve been better.
I felt like I was drowning.
But then I decided that there was still time.
That I was still young.
That it was still worth it to try and live.
And live well.
© 2017 TheBlackSwanDiaries All Rights Reserved. Photo by Rachel Neville Photography
From there, it was like an avalanche that brought me to today. I can’t tell you what broke in me that moment that propelled me to get help - mostly because blocked memories have created an opaqueness around some of the more traumatizing events, and trying to access them is taxing.
What I can tell you is that I was tired of living behind a mask and tired of suffering in silence. Like every Black woman ever, I was sick and tired of being sick and tired. I was emotionally exhausted in a way that no young person should be, my shoulders bent from the weight. The few people who stuck by me on the several years long journey to now are my anchors on this Earth - you may have seen them in pictures. They became my bridesmaids.
Steadily I rose, the surface of the water growing closer with each breath. I started opening up. I radically accepted the parts of me that had once separated me from the rest of the world, and created my own space to dance in. My corner of the world grew flowers for the first time. I drew a deep, dry breath.
I could swim.
only + always love,
syd