Neglect

Chronic illness isn’t just what happens inside your body. It’s what happens around it too. It’s the maze of mirrors the world builds around you. You try to walk forward, but in every direction, there’s a disordered reflection of yourself. Not the kind you laugh at in a mall funhouse, but a warped, dizzying trap where every door leads to another hallway, another dead end, another gatekeeper pointing you the wrong way.

And the mirrors don’t just make you look shorter or taller — they show you as lazy, dramatic, hopeless, beyond fixing, too sick, not sick enough. And sometimes, even when you know your own truth, those mirrors convince you they’re real.

You spend months. Years. Decades. Wandering the maze. Bumping into glass. Begging someone to break it. You bump into the medical industry that silences you in polite language:

“We didn’t find anything.”

“Let’s wait and see.”

“It’s probably anxiety.”

You bump into caregivers who mean well — but trap you in their fear. Into insurance companies that tell you your survival isn’t cost-effective. Into doctors who send you down another hallway because they don’t know what else to do. You even bump into yourself — the part that whispers, Maybe it really is all your fault.

The system is built to look like it’s working, but inside it’s rotting. And people outside the maze can’t see that while they imagine you’re being “cared for,” you’re actually crawling, crying, begging anyone to stop the damage. You are surviving — barely — in a system that wasn’t designed to save you.

I’ve been bumping into mirrors for seven years. I survived neglect that so many others didn’t — not because the system saved me, but because God did. He kept me here for a reason. Maybe I don’t fully know what that reason is yet, but I do know I have a story to tell.

So I write. Even when my screen intolerance threatens to steal my voice.

I write for that people who didn’t make it.

I write for everyone still crawling through this maze, wondering if anyone sees them.

And if you’ve never stepped inside this maze yourself, maybe you’ve walked right by it, oblivious, — do you see me now?

👉 I even turned this piece into a spoken word poem. Here’s the video:

youtube.com/shorts/PpQ5dn1xCqE

#ChronicIllness #ChronicPain #ChronicFatigue #POTS #Dysautonomia #BrainInjury #MedicalTrauma #chroniclife #InvisibleIllness #chronicillnesscommunity #chronicwarrior #chronicillnessawareness #chronicpainawareness #PoetryCommunity #poetryvideo #spokenwordpoetry #chronicillnesspoetry #InvisibleIllness

It is so easy to be caught off guard. Last Thursday should have been just another nice summer day. July 29th just another regular day. Although the week before I started feeling a sense of unnamed dread. Then I was reminded of an upcoming anniversary date.

Last Thursday was the 4th memorial of my father’s passing. I thought I had come to terms with it. Unfortunately there was still so much anger and resentment that came to the surface. This was in addition to the regular sadness of loss. Oddly enough the anger and resentment is not directed at my father. It is directed at my mother and 3 older siblings.

I have come to accept that my father is in a better place. Where he no longer has to fight the symptoms of diabetes and all the complications that came with it.

While my father had a grandiose narcissistic personality style. I have come to forgive that while he was alive he did not have the capacity to know how to show and express unconditional nurturing love. He was an emotionally broken man who managed to accomplish quite a bit in the 81 years he was on this earth. I’m still working on forgiving that he did not figure out how to heal enough to at least try learn healthier ways to love his wife of 59 years, 4 children and 2 grandchildren. I’m starting to focus on the more positive memories than the negative ones.

What I’m still so angry and resentful about is how the rest of my family of origin behaves, especially towards me. I did not receive even one direct message from my mother or 3 siblings to check in last Thursday or in the last 3 years. You see my family does not know how to communicate or show emotions in healthy ways. I had to see WhatsApp pictures of my mother, sister and 1 brother at my father’s grave site. You see they did not even think to communicate with me and let me know. Even in this I blame myself. It must be my fault since I did not go out of my way to find out if there was going to be anything specific going to take place. A part of me wanted to see if even one member of my family would take the initiative to reach out to me.

Seeing another example of how I’m always excluded within my family is the norm. If I do not always take the initiative I would never know what is going on. This was just another example of how I’m always made to feel separate and isolated. It took a friend to mention and validate that this behaviour is cruel continually excluded me in these physical and emotional ways.

I still need others to point out all the unhealthy behaviours my family of origin continually exhibit towards me. For what I take as normal behaviour others around me help to validate how unhealthy they really are. How their emotional abuse and neglect is unfairly cruel and unjust. Supporting me to understand I truly do not deserve this unjust treatment.

A few years ago I believed there was something so fundamentally wrong with me that I somehow deserved their continual criticisms and judgements. Deserving of their unprovoked attacks of my character. You see I have been the family scapegoat since the day I was born. I was continually gaslighted at every turn. I’m always in the wrong. I had been so conditioned to believe I was the common denominator to being always the problem. That I was the one who never made sense and did not know how to communicate. I’m too “sensitive”. That I continually blow things out of proportion and bringing up uncomfortable situations and emotions for no reason. Always trying to make everything about me because I’m so selfish and self absorbed. I was so convinced of their opinions of me that I doubted my own mind, I had almost no self-esteem, self-worth or self-confidence.

So that would mean my anger I still hold for the past 4 years is completely unwarranted. Feeling anger for being made to sit outside of the hospital by myself for 5 hours while my father was connected to tubes, was not a big deal. That for 3 days I watched my 2 brothers and 1 sister be allowed to see and talk to dad while he regained consciousness. That by day 4 when he passed I was not supposed to feel resentment and hurt for not being given the opportunity to say goodbye. I had to accept the conversation I had on Father’s Day was going to be the last 1 on 1 connection we had. At least I had made my peace during that conversation. I accepted that while he spoke about his legacy of his work, even though he had been retired for years at that point. I accepted he was not capable of seeing his wife of 59 years or his 4 children and 2 grandchildren were not part of his legacy. I could accept my father for his limited capacity to show and express love. I forgave him for only being able to be who he limited himself to be. It was not my fault for his limited capacity.

I’m learning my feelings are valid in spite of the rest of my family deny my perspective and lived experiences. It still takes others to validate that my feelings make sense based on how I’m unfairly treated by my family. I have come to understand when there is never any repair for each emotional wound they remain open to fester. I can say almost every single emotional wound from my family of origin has been left to fester since the day I was born. I only beginning to learned the complexity of being raised by emotionally immature parents. This has left me with so many festering wounds which have become so infected and extremely hard to heal. I have been struggling to figure out how to heal from decades worth of blood poisoning. How does one heal from so many wounds that had been left untreated and unattended for decades. By 56 it has become so complicated in figuring out how to treat and recover from these wounds. That there is not a straightforward treatment plan.

It is only because of my years of therapy. My determination to keep going inspite of my latest diagnoses of #complexposttraumaticstressdisorder #ptsd #majordepressivedisorder #dysthymia #anxiety #adhd #autism #highlysensoryperson . The clarity I have gained with understanding my diagnoses has finally allowed me to begin to heal.

I’m learning to become my own loving parent. Taking on the responsibility that I have to find it within me to heal. Internal Family Systems (IFS) has helped me find the tools to accept all my parts. I’m not perfect, I’m human and deserve to be seen, heard and understood. I can learn to to see hear and understand myself first and foremost. I also now know I love myself enough to only look to, and surround myself with people who see, hear and understand me. Right now none of those people are my mother, sister or brothers.

I can love my family but hate their behaviour. I have even come to terms of the grief and physical loss of my father. I’m now learning to grieve and accept the emotional loss of what will never be. My mother, sister and brothers do not have the capacity to express unconditional love. I have proven to myself I have the capacity to learn to love myself. That I’m worthy to only surround myself with those who prove in their actions and behaviour that they love me and have my back no matter what. I will no longer waste my energy begging to be seen, heard and understood. I’m worthy to just be. To live by my own values and principles.

In The Body Keeps the Score, renowned psychiatrist Dr. Bessel van der Kolk explores how trauma reshapes both the body and brain, deeply impacting emotions, relationships, and behavior. Drawing from decades of clinical experience, he shows how trauma, whether from abuse, neglect, violence, or emotional loss, can become lodged in the body, affecting physical health and mental wellbeing long after the initial experience.

Dr. van der Kolk presents a wide range of healing approaches beyond traditional talk therapy, including mindfulness, neurofeedback, EMDR, yoga, and creative expression. Ultimately, The Body Keeps the Score is a compassionate guide for anyone seeking to understand trauma’s lasting effects and how to support recovery through body centered, integrative care.

What is a pack? A hierarchy of the same group of animals. One in charge above all.

What is a family? A line of the same sort. There’s always one in charge while the others follow around.

What happens when a wounded pup is found? An abandoned animal? Neglect, passing by, nature shows us a multitude of things.

Typically it’s the mothering type that bring them in, clean them off, nurture and love them.

How often is it the father?

What it becomes in theory is a ‘family’.

A pack.

Big and little.

A family by all accounts, something positive and good. Strong in faith and loyalty, ties.

What becomes of the unit when it’s fractured though?

Pieces displaced by history and time.

The family I speak of, the family I remember, it started all with a little Mexican woman with a cooler of beers in the kitchen, dancing at the stove with whoever was in her reach. Her fingers twisted at awkward angles but if you took the spatula from her, god help you.

Through this woman the love passed on in her line, even to the stray pup that was brought inside.

Somewhere along the years of memories and grief, it broke. The new speaker tried to over rule who was who; get rid of the memories of the pup all together.

With his pups along side him.

The three who mourned her passing too.

And the line? Oh, an ode to the line- he may be yours but by law and justice, in the eyes of God almighty we belong to him too.

In a world so cruel and harsh it would push out a child, deny him, starve him, neglect him- to be placed directly in the path of the alpha, hand delivered by God himself.

/Remember his word. You’re not here because of spirituality, HE called you here./

How could you be so cruel to ostracize him while the man who brought him in, ordered by God, is lying in a hospital stuck in the state he is.

’Like arrows in the hand of the warrior are the children of one’s youth. Blessed is the man who fills his quiver with them.’

He may be yours by blood but he is our by teaching, by love, and the legacy of sacrifice.

Years before our own pack was formed, before he added the ones currently in his life-

’Little’ was the first one there.

‘Whoever receives one such child in my name receives me and whoever receives me, receives not me but he who sent me.’

I don’t deny your lineage.

I don’t deny the history that was built between you- them- him.

So don’t deny our lives.

One of the reasons we’re here today.

He gave him that piece first.

He gave him your last name.

That pup, now grown, an alpha on his own, he passed it to us.

He is just as much ours as he is yours.

I see you praying in the hallway.

I hear you praying over him.

Bile rises in my throat at the waves of hypocrisy that roll off of you.

We are here today because of God and the decisions, the choices he laid directly in the path of the son who’s mother had the crooked hands.

I mean no disrespect towards the line but whether YOU like it or not, we’re apart of it.

I want to remind you, STAR, it started with them. It started with us. I may not be given the official title but I hold it proudly in my heart.

The first grandchild.

My name given to me by my parents, my middle name inspired by him.

Maria, forever tying me to my Mexican roots.

I don’t know what’s going to happen, only God does.

His eyes may open, he could turn us away, but too many visitors we were NOT.

“The evil tongue is a flattering tongue that will speak fair to one’s face but will defame- ‘He that hateth dissembleth with his lips.’

You can say what you want but his name is on that paper, his hand signed it. That can’t be undone.

History and pain aside, the stories, you can’t change any of it.

The foundation of our family was laid on the god given words woven into their lives which in turn, attached our square to yours.

‘Big’

‘Little’

You can’t erase it.

No matter what is said, what is done, that’s what they’re known by.

Loyalty isn’t just standing at his side and praying to the God that brought us here, the one you’re willing to ignore.

Loyalty is being there through it all and standing by his side praying, the nails of their monsters having grown over their shoulders, asking for him to come back and open his eyes to say

“I love you” just one last time.

#Family #Familydrama #Faith #healingthroughwriting #lettertotheline #loyalty #Love #hegaveushisname

Madness: Race and Insanity in a Jim Crow Asylum by Antonia Hylton is a powerful blend of investigative journalism, historical research, and personal reflection. The book centers on Crownsville State Hospital in Maryland, originally opened in 1911 as the Hospital for the Negro Insane during the Jim Crow era. Hylton uncovers the harrowing conditions endured by its Black patients, who were often institutionalized for reasons rooted more in racism and poverty than mental illness. These patients were subjected to overcrowding, forced labor, experimental treatments like lobotomies, and systemic neglect.

Drawing from over a decade of archival work and interviews, Hylton brings to life the human stories lost to censored or destroyed records, including the tragic account of Elsie Lacks, who died at age 15 after a gruesome brain procedure. The book also examines how institutional racism shaped Crownsville’s practices, which echoed slavery-era systems of control. Hylton connects these historical injustices to her own family’s struggles with mental health, exploring how racism and generational trauma affect Black communities today.

In addition to documenting suffering, Madness highlights moments of resistance and advocacy from Black nurses, doctors, and community members who pushed for reform. The hospital’s eventual desegregation and closure in 2004 mark both progress and the long-standing neglect of Black mental health. Hylton ends by connecting the legacy of Crownsville to contemporary issues like the criminalization of mental illness and lack of accessible care for Black Americans. Through meticulous storytelling, Madness reveals how deeply racism has shaped mental health treatment in the U.S. and urges reckoning, remembrance, and healing.