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Acute Intermittent Porphyria (AIP)
Samantha Ellingsworth
BROKEN MARIONETTE
SAME FIRE, SAME AGE
My Mother’s and My Porphyria Story, and How I Became the Song Creator Behind Broken Marionette
By Samantha Ellingsworth | Broken Marionette
I grew up watching my mother burn . There were no flames anyone else could see. Her hands burned. Her back burned. Her abdomen could hurt so violently that she would curl into the fetal position and rock, cry, wail, and scream, because there was nowhere inside her own body she could escape from the pain.
I was younger than 10 when my mother became seriously ill. I did not know words like neuropathy, autonomic dysfunction, encephalitis, narcolepsy, or porphyria. I only knew something was terribly wrong with my mother and nobody seemed to know why.
I would hold her while she cried, rub her burning hands, massage her legs and back, and try to comfort her even though I was still a child myself. I remember promising her, “Mom, if the doctors can’t figure it out, I will.”
I thought keeping that promise would mean becoming a doctor. I never imagined illness would eventually take that path from me, or that years later, I would help others another way… by turning what happened to us into music under the name Broken Marionette.
Seeing her like that broke me into a million pieces. I could not make the pain stop, so I decided I would understand it. (Never knowing 1 unfortunate day I would.)
MY MOTHER’S FIRE
My mother was only 25 when the symptoms that would shape much of her life became severe. She developed excruciating burning in her hands, abdomen, and back. Her abdominal pain became so severe that doctors removed her gallbladder, hoping they had found the cause. Later, severe endometriosis became another possible explanation, and she was told a hysterectomy might finally relieve it. Neither surgery stopped the burning abdominal pain.
Over the years, neurological problems followed. She became weak. There were periods when a leg or arm stopped functioning at all. She could become profoundly confused, behave in ways completely unlike herself, hallucinate, and later have gaps in her memory. She would eventually see more than 80 doctors.
Another unrelated condition, narcolepsy complicated everything. Since she also took pain medication, people sometimes blamed the medication when she suddenly fell asleep or appeared unconscious. Trying to control pain that severe with medication was like trying to put out a house fire with a spray bottle. The bottle was visible. The fire was not. So people blamed the bottle. She was called a drug seeker.That kind of dismissal had consequences. 1 example still haunts me. After an ER visit for excruciating leg pain, my mother was sent home as a “drug seeker” without tests to find out what was actually wrong. The next night she collapsed from previously unknown diabetes, with a blood glucose around 1800. She spent 2 weeks in a coma. Diabetes ultimately cost her both legs and nearly her life.
Illness also showed me how quickly people can disappear. Our once large extended family scattered as my mother became sicker, and some blamed her work, diet, or medications instead of believing she had a true illness. Even now, some remember her as an addict instead of the desperately sick woman I watched suffer.
Late in her life, my mother finally received a diagnosis of Acute Intermittent Porphyria, or AIP. That had been obscured for years by her other serious illnesses. That is 1 diagnosis that would become especially important to me later.
I CHANGED MY LIFE TRYING TO SOLVE HERS
Before illness took over our lives, my 1st dream was to sing. I'd even write my own songs as a little girl. When I realized I had a terrible voice, I then decided to teach. Yet after watching my mother suffer, I chose healthcare instead. I became a CNA and nurse tech by age 16. Later studied psychology and pre-med, and planned to become a physician. I wanted answers for my mother and for patients whose illnesses doctors could not explain. Instead, my own illness eventually became severe enough that I had to leave college and that career behind.
I never imagined I would become 1 of the patients I had wanted to help.
SAME FIRE, SAME AGE
I had signs of illness long before adulthood, including abnormal skin reactions, heat intolerance, severe sleepiness, pain, menstrual disease, and neurological and autonomic symptoms I did not yet understand. But the similarity that haunts me most is the age. My mother was 25 when the severe porphyria symptoms became part of her life. Then at nearly the same age my hands, abdomen and back started to burn. Then I had episodes where my limbs, my nerves, weakness, and autonomic instability caused my body to stop doing what it was supposed to.
The abdominal attacks felt like a blazing circular saw had been dropped into the center of my body, cutting, grinding, and throwing fire through my abdomen and back, with nowhere inside me for the fire to escape. At times the pain came with severe nausea and vomiting.
I remember realizing, “I have whatever mystery illness my mom has!” The little girl who had spent years sitting beside the fire was now living inside it.
HORMONES BECAME A CLUE
After Depo-Provera birth control, my health changed dramatically. I developed severe abdominal and neurological pain, burning, weakness, swelling, and rapid weight gain despite barely eating. I told my gynecologist I believed the injections were making me sick and causing pain. Yet he kept gaslighting me, saying “that was impossible.”
I trusted my doctor and received another shot. 1 of the worst decisions of my life.
After my 3rd injection, I ended up in the ER. They told me never to receive it again because another shot would kill me, but they could not tell me why my body had reacted so violently. Even after that warning, my gynecologist still tried to pressure me to take another injection. I swore to never take any birth control.
For a time, I was ending up in the emergency room almost every 4 weeks. One ER doctor looked through my previous visits and noticed they seemed to line up with ovulation. It kept happening like clockwork. He knew the pattern mattered. He just did not know what it meant.
Alcohol became another clue. Again and again, drinking was followed by a major attack until I finally decided I would never drink again. I have never wanted alcohol badly enough to gamble with that fire again.
CAS complicated the picture too because some of its triggers overlapped with porphyria triggers, including hormones, alcohol, and medications.
WHEN THEY TOLD ME IT WAS IN MY HEAD
Very early in my illness, I was repeatedly told the pain might be psychological. The burning became so unbearable that during those years I made multiple attempts on my life trying to escape the suffering.
I remember a psychiatrist finally telling me, “Samantha, this is not all in your head. We have watched you closely on the cameras. We can see that you are in true pain.”
WHEN MY BODY STARTED LOSING FUNCTIONS
At my worst, I was eating only about 1 meal a month. My neurologist many years later investigated porphyria (without even knowing my mom had it) because of my symptoms, abnormal urine porphyrin testing, and my history. Porphyria entered my own medical record.
It is only 1 part of a medically complicated body. I also live with Ehlers-Danlos syndrome, MCAS, dysautonomia, small fiber neuropathy, CNS demyelinating disease, narcolepsy with cataplexy, severe gastroparesis, neurogenic bowel and bladder dysfunction, episodes of encephalopathy, encephalitis, and more.
PLEASE, SOMEBODY FIND ME
Years before my catastrophic hospitalization, I was extremely weak. I tried to walk a few steps toward the bathroom. I collapsed face-first onto the carpet and realized I could not move. My eyes could move. I could blink. The rest of my body would not respond.
Inside my head I was begging, “Please help me. Please, somebody find me”.I remained there for at least an hour before somebody found me. My family called 911. The paramedics were alarmed and had no idea what was happening to me. At the ER, the bed was only a few steps from my wheelchair, but I could not make my body move and could barely speak.
The nurse told me to “Get into the bed.” I finally forced out the words, “I can’t.” She rudely responded, “Stop the act and get in the bed now!” I somehow forced myself forward enough to face-dive onto the bed, where I remained stuck. Then I was told to provide a urine sample. By the time my family arrived, they had to physically hold me upright on the toilet. I was eventually sent home without an explanation. And that was not my only episode of paralysis.
I WENT IN FOR SURGERY. MY BODY NEVER CAME BACK THE SAME.
By 2023, severe endometriosis and adenomyosis had caused extensive damage. It felt like barbed wire wrapped around my organs, pulling, twisting, and yanking downward while scraping and tearing everything it touched.
Across my surgeries, I ultimately had removed my uterus, ovaries, cervix, appendix, and a section of my colon. Along with extensive endometriosis, adenomyosis, and a large cyst.The 2023 surgery itself already felt like 15 out of 10 pain. Then my epidural was turned off ...
First came intense prickling. Then the burning erupted like a volcano. My body became unbearably heavy. Movement slowed, then my ability to move began shutting down. If the surgical pain had felt like 15 out of 10, this felt like 50,000 out of 10.
I became essentially paralyzed from my head to toe. I lost my ability to speak. My bladder stopped emptying. My bowel and gastrointestinal system barely functioned. The doctors were stunned and deeply alarmed. I was told they had never seen paralysis like this after gynecological surgery. My room began filling with doctors trying to understand whether porphyria, demyelination, a neurological event, or something else was responsible.
The burning felt like acid had been poured through my entire body and ignited. From the inside out, I felt like I had been set on fire, while every nerve felt stripped bare and electrified. At times I desperately wanted to scream but physically could not make a sound. My mind was screaming while my body lay silent. I felt as if I was trapped in a coffin being cremated alive. Torture unlike any. Much like you'd imagine hell.
My husband at the time stayed beside me throughout the hospitalization, at one point going nearly 5 days without sleep while helping care for me. My family constantly put ice on me every 15 minutes. At the worst point, we were going through approximately 150 ice packs or buckets of ice in a day. Pain medication felt like throwing one drop of water into a wildfire.
I remained in the hospital for more than a month. When discharge finally became possible, I still required too much care to safely go home. I was given a choice between a nursing home and rehabilitation. I chose rehabilitation. In rehabilitation, I had to relearn basic movements, from rolling and sitting upright to standing and eventually taking a few steps again. However, I never returned to the body that entered that hospital. Today I primarily use a power wheelchair.
I keep thinking to myself, “What if one day one of these episodes becomes permanent, leaving me paralyzed and burning, unable to move or speak but completely conscious inside it?”
THE ONE PERSON WHO UNDERSTOOD THE FIRE
When I was little, I held my mother while she suffered through pain I could not understand. Years later, there were moments when we sat together and endured the same kind of fire.
As a child, I held her because I wanted to save her. As an adult, she held me because now I finally understood. I spent my childhood wishing I could understand what was happening to my mother. I never imagined understanding would require becoming sick enough to feel it myself.
She once told me that if she had known she could pass this kind of suffering to me, she would have spared me from it even if it meant she never got to have me.When my mother died, I did not only lose my mother. I lost the only person I could call without first explaining what “burning” meant.
BROKEN MARIONETTE
For years, I thought illness had simply destroyed my dreams 1 by 1. Then I started writing songs again. Music, my first dream, came back. Only this time, with technology, I did not need to be the singer. I could be the writer. I write every lyric myself and use AI-assisted vocals and music production to turn those lyrics into finished songs. The voice may not literally be mine, but the story is. Every word is mine.
I chose the name Broken Marionette because neurological illness can feel like someone cut the strings in the middle of a performance. The person is still inside. The will is still there. The brain says, Move. Stand. Speak. But the body does not obey.
A few of my songs: Living Inside the Fire came from the burning pain. Gaslit came from years of knowing something was wrong while being dismissed. Same Fire, Same Age came from my mother and I both being 25 when the burning began.
There are not many songs I can relate to about illness, pain, or disability. I write these songs so other people with chronic illness can hear pieces of their own story in mine. I hope the music can help them feel less alone and get through some of their hardest times. I also want someone to be able to send my songs to a spouse, parent, caregiver, friend, or doctor and say, “Please listen to this. This is what I have been trying to explain.”
I hope Broken Marionette grows beyond music too. I want to create chronic illness and rare disease videos, use photography to make invisible suffering visible, write for children growing up around illness and disability, and someday tell my mother’s and my full story in a book.
Maybe I never completely lost the dreams I had before illness. The singer became a songwriter. The teacher became an advocate. The healthcare worker and pre-med student became someone who can explain illness from both sides of the hospital bed.
And the little girl who once promised to find answers is still searching. I am still going to doctors, asking questions, researching, and refusing to accept that “we don’t know and there's nothing we can do” has to be the end of the story.
I cannot give my mother back the years she spent searching for answers. I cannot undo what happened to either of our bodies. But I can keep the promise I made to her. “Mom, if the doctors can’t figure it out, I will.” I am still trying. This is why I write. This is why I created Broken Marionette. And this is what I believe I was put on this earth to do.
FIND ME & MY MUSIC
I create music and chronic illness advocacy under the artist name Broken Marionette.
Find my music on most major platforms such as Spotify, iTunes, Youtube Music and more
My upcoming album “THIS IS MY STORY”
Living Inside the Fire:
https ://distrokid.com/hyperfollow/brokenmarionette1/living-inside-the-fire/
Gaslit:
https://distrokid.com/hyperfollow/brokenmarionette1/gaslit/
Broken Marionette music releases on YouTube:
https://youtube.com/channel/UCnzVATYtnM9aCFmmys9sKag?si=-qcfjb94BOExxlTb
Chronic illness awareness on YouTube:
https://youtube.com/@samanthaellingsworthshows7921?si=UVc3kJ_qvuaDgGfb
TikTok: @samanthacshows
Facebook: Samantha Ellingsworth | Broken Marionette
