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I am not a defect or science—I am me

Linseigh discusses surviving necrotising enterocolitis, the abandonment of rare patients, and the pursuit of humanity in the midst of exploitation.


I was 22 when I was called a defect.


Before that, it had never dawned on me that I was supposed to be ashamed. I had always found my scar beautiful; its line a map to an unusual journey.


This route, which scored my torso, was undoubtedly different. But not bad.


As with W.E.B. (William Edward Burghardt) DuBois’s theories on race, the concept of disability comes with its own “double consciousness.” On one side: I am Linseigh, a young woman who loves to sing and is driven by a curiosity of history, emerging technology, the stories everyone carries within them. I’m an actor and academic. I like books and hot chocolate. I have challenges and a difficult beginning marked by a scar I often forget about, but I am doing well with what I’ve been handed.


Then there’s the other side: The necrotising enterocolitis (NEC) girl; the girl who just won’t shut up about NEC survivors. She does a strange thing where her eyes close, she’s always got an excuse when it comes to school, and she’s got a scar that must make her terrified of swimming pools.

But we’ll start with the facts: I was born in August 1997 in a hospital that is now a mound of dirt. Though I was not born prematurely, I was a slight 4 pounds and 14 ounces. Thus began the decline.


I was taken straight from the delivery room to the neonatal intensive care unit (NICU), where my parents watched me through a window. I had a heart murmur; I couldn’t hold my glucose; it was impossible to keep my mother’s milk down. Following some tests, I was diagnosed with necrotising enterocolitis, a brutal, often fatal disease in which part of a baby’s intestine “dies.” Google did not yet exist, my parents didn’t know anyone who had been in their shoes, the library didn’t have any relevant books, and my care team didn’t care to answer questions. Finally, a nurse handed my parents a book with a paragraph on NEC. Some of it had been censored. It said survival wasn’t likely. If I did make it, I would never do well in school. I would lag in perpetuity.


I survived thanks to an operation in which part of my colon was removed. I was sent home in September with a colostomy bag and returned for its reversal in November.


Despite such a difficult start, the earliest years of my life were pretty normal. Of course, it wasn’t without anxiety, and what I would later learn were lasting echoes of trauma. As a baby, my parents placed me on the centre of the table, watching me like a fishbowl as they ate. They were always very protective, especially as they were advised not to try for more children.


But there was also determination: My mom, a schoolteacher, worked with me constantly as soon as I was able to speak. After my homework was completed, over the weekend and summer holidays, she buried me in stacks of workbooks. She called it “Love Work,” as if it would somehow soften its bitterness. But by the time I was seven, I was ahead in most subjects.


That did not mean I came without glitches. Yes, I earned top marks. But I processed information so slowly, I often found myself finishing assignments in the back of the classroom (and sometimes in the hallway) as the rest of the class moved on. My gross motor skills were so poor, my gym teacher asked my mom if I was actually left handed. I had difficulty gaining weight, which was further complicated by the fact that I couldn’t eat more than small amounts of food at a time without getting sick. Later, I would also develop an intolerance for high amounts of fat.


And then there was my scar. I had always had a sort of fondness for it, thanks to both the lore associated with such marks in fantastical storytelling, along with the understanding of my own journey instilled in me by narrated walks through my NICU photo album. But this signifier of survival was also a reminder of my mortality. Every so often as a child, I’d wake up to a sharp, searing pain across that faded line. It felt as though I had been carved open for Christmas dinner. I’d cry that my “scar hurt,” and then it would eventually go away, allowing us all to forget about it till the next occurrence.


One morning, as I was getting ready for one of my final days of 11th grade, the pain did not dissipate. Instead, it worsened to the point where I eventually went to the hospital. By the time I had arrived, the pain was so extreme that I was shaking violently, chattering my teeth, vomiting, and floating in and out of consciousness. A number of hypotheses were thrown out—all of them proved false.


Between the thick walls of pain slipped out a resigned thought: I wonder if I am going to die today.



After another assessment of my medical history, it was decided that I was suffering from long term complications of NEC. We did not know this was possible. And as I would later discover as I returned to the hospital each year with another episode, neither did most doctors, if they had heard of necrotising enterocolitis at all. So they accused me instead: I must have overdosed, had too much alcohol, gotten pregnant, eaten too many burgers. And I was often denied emergency care for hours or locked in an office until I confessed to something untrue.

The few times I have been believed, I’ve been exploited: a surgeon once used me as an “exciting learning opportunity” for his students, and actually had the nerve to express his disappointment when he couldn’t operate on me. My face and name have ended up in slideshows, flanked with rats and mice. I have been asked to collaborate on papers, only to discover that, unbeknownst to me, medical professionals have taken the liberty of publishing my full legal name and medical history in multiple journals.


I cannot even afford to breach the paywall to read what has been written about me. I am a piece of science.

The medical world has used me for its professional gain, yet I cannot even access follow up care due to a lack of research. This task, apparently, was up to me. Up until this year, I have spent my entire adulthood working on NEC awareness, research, and advocacy. I’ve spoken at conferences around the world, met with US Congress, and published one of the first known studies on long term outcomes, which I had fought for for years. I continued to be exploited while also having my intellect negated. As one consultant put it, I had nothing “informative to say.” Yet after nearly every webinar and meeting I participated in, attendees cited my words as one of the most impactful elements of the event. I was told time and time again by some of NEC’s most lauded experts that without my presence as a patient in that space, so many of them would have never known long term complications existed to begin with. I had become the NEC Girl, whose persona was used to garner support, whilst being unsupported herself. But my work reminded me of why I remained: for the survivors who weren’t so lucky; who relied on a mobility aid and tube feeding; who grew up in hospitals and had the cognitive development of a 6 month old; whose families struggled each day to keep them alive; whose families lost them to complications after 15 years of fighting. I was often the only one in the room advocating for these patients, yet I was often called selfish. “You survived,” one bereaved parent told me when I was discussing the need for care. “Don’t you people have enough?”



Last autumn, we started having the first known gatherings of adult NEC survivors, an effort that was unfortunately shut down by those who saw the initiative as unfair towards other families. Our intent was to devise tools and resources that could help our fellow patients, including a name for our condition that could help establish legitimacy. We also discovered that we are unified by our fear of the future. The oldest known NEC survivor is in her 50s. She is a unicorn amongst unicorns. We still do not yet know what the arc of a NEC survivor’s life looks like. All we know is that it often points downward as new symptoms appear with age. I have been told I may need a feeding tube if my ability to tolerate food continues to dwindle. Yet I still cannot get help.


I do not know if I ever will, as NEC survivors do not have champions. This is something that was very difficult to accept. When this lingers in my thoughts, I try to shift my focus to things that do make me feel like I am more than disposable.

While doing all of this work, my mind started failing me for the first time. I realised how much I had leaned on it for so long, because it was the last thing that hadn’t abandoned me. In the middle of my Cambridge Creative Writing dissertation, I lost the ability to read and write. I started passing out, collapsing, and having what my neurologist suspected were seizures. Then came the partial paralysis, which I would never fully recover from; the lectures that sounded like a foreign language; the speech impediment; a weird facial tic where my eyes closed when I was stressed. I had to buy a walking stick.


Last summer, I was finally diagnosed with a functional neurological disorder. Basically, my brain signals do not work properly. As it is also under-researched and officially recognised as rare, I was given a therapist to help me cope with the fact that, once again, I wasn’t going to get help. The road ahead was bleak. When I started attending support groups, I met so many patients who eventually had to let go of their careers; whose memories were wiped every other week; who lost the ability to speak or walk for months at a time. When one imagines the future ahead upon graduation, this isn’t what they are picturing.


Just as we do not fully understand why NEC occurs, we do not know what exactly brings about FND. My neurologist suspects it is the result of trauma due to NEC; but we simply cannot know without developing a stronger understanding of the brain. Only two things are certain: (1) A lifetime of compounding illnesses has helped me adapt very quickly to this new self. I have learned by default to always find a way forward, even if the shoes are removed from my feet. Instrumental to that was (2): the discovery that, for some inexplicable reason, I function perfectly when I am acting. In January 2023, I made it my mission to ensure I was always involved in a production, be it a staged reading or fringe play, as a form of therapy. By June, I had booked an agent. Days later, I had an audition that would change my future.

I have since left the world of rare disease for something that was more personally fulfilling, leaning into my individuality beyond a condition. I am an assistant producer for an immersive company called DARKFIELD, and I have the honour of covering Faye and Tina Treadwell in the UK and Ireland tour of The Drifter’s Girl. I have never felt more empowered—it feels like a second bout of survival. As someone who has been treated as a specimen or opportunity, self determination is becoming ever more important. I belong to no one.


The next person who gets to benefit from my story will be me. And if I want to say my quality of life has value, I will, because it does.

I will not walk away from my community. But I will fight for our precarious futures on my own terms.

 

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