By Ireland Thomas
Have you ever heard a child scream before? I don’t mean a child’s scream of anger when you fail to meet their demands, or the fearful howl they emit when they realize horrifying creatures, with no uncertainty, lurk beneath the bed.
Think of a real, serious scream, of mourning or of pain, screeched by someone who is filled with suffering. When your mind creates this sound, is it ever a child you hear?
We all often think children are not old enough to understand death or real pain. We shut them down and shut them up, silencing the young with stories of our own experiences we naively assume they have not yet had. We tell ourselves the only pain the young experience is from scraped knees, mosquito bites, and paper cuts. This is not always true.
I am telling you now what a scream is; it is audible agony, complete inner brokenness erupting from a throat. Tell me, do you associate that scream with children like I do?
“What’s wrong, honey? What’s wrong?” my mom shouts. My parents run from their bedroom to mine, awoken by my sudden cries. I am six and I think I must be on fire. I think someone must be putting acid on my back, I hurt so bad, but I don’t see who is hurting me anywhere. I am burning so much from a fire I can’t see and can’t get away from.
I frantically tell my mother that I’m burning, that I’m on fire. She’s asking questions I don’t have answers to, her voice full of concern. The only thing I know is it feels like there is a fire on my back. She reaches out and touches me there—and it hurts, it hurts, it hurts. I cry out louder.
She quickly pulls off my shirt, and Dad is told to run downstairs and grab a flashlight because he doesn’t see anything either, even though she turned the overhead light on as she came in and my room is hued in bright yellow. Dad gets back and hands the flashlight to Mom, and she’s searching my back with the flashlight for the answers I don’t know. Wherever her fingers touch hurts worse. She says she doesn’t see anything, that my skin is not red or swollen, but my mom knows everything so she must know what’s wrong, right?
My mom knows everything–she knows what words mean, where all the things I can’t find are, and she always knows when I do something bad, somehow. She has to know why this is happening because she always knows, so why won’t she answer me?
“Mom, I don’t understand—please, why does it burn so bad? Why do I hurt so bad?” I keep begging her to explain. She pulls her hand back. She tells me she doesn’t know.
I repeat the question because it is the only thing I can ask, and there’s still nothing she can answer. The night is painful and slow. I wind up vomiting – it’s in my mouth – I try to keep it in as I run to the bathroom, but it winds up dripping out all over the hallway floor, and I say I’m sorry because that’s what you’re supposed to do when you make a mess.
I don’t want to be sitting on the bathroom floor and I don’t want to vomit anymore, but my mom says that I should, and that I’ll feel better after, so I do. I don’t have anything left to vomit, so my stomach doesn’t feel as bad, but the fire on my back is still there.
I begin to think there must be some sort of monster inside of me igniting my spine. I can’t see it, but it must be there. There’s no other explanation. But this long night breaks into day, and as suddenly as the monster arrives, it’s just gone. Exhausted, I fall asleep at 7 in the morning.
In the afternoon, we go to our emergency appointment with my pediatrician. The monster doesn’t come with us; it only hurts me at night. Without the pain currently happening and without any visible sign of something wrong, we are sent home without answers.
The pediatrician will not see what she says is not there. My family and I try to move forward and forget the monster exists, but how can I return back to the happy, free version of myself when the monster is also unrestrained?
It’s the second-to-last day of school and I am seven years old when the monster returns in a rage. Four nights of overwhelming pain, vomiting, and crying out into the night go by in a blur of agony and fatigue. I get 1 to 2 hours of sleep a night and try my best to sleep during the day, but the stress of this unseen pain makes it difficult to even calm down enough to rest.
This attack is a war, not just a battle, on both my body and my mind. I begin to hope and pray that this is all just my imagination. I think that if I can convince myself it is not real, it won’t be. Except it is real. I can’t understand it, and I can’t escape it, but it is real.
I don’t know how to explain it. My ideas on what pain could be have been forcibly expanded, but my vocabulary has not. All I know how to convey in words is “it hurts,” and “it burns”—and that’s not enough for my pediatrician or any of the other pediatricians we went to for second opinions. It’s not enough for the Emergency Room (ER) doctors either, even when we went in the middle of the night while the attacks were actively occurring. It’s an invisible, monstrous thing, and no one is listening to my parents who are crying, begging anyone and everyone with any amount of power to look into this. No one is listening to them, and no one is listening to me.
But it’s not the doctors’ fault, right? It’s mine, for being incapable of describing it properly, not because I am lying, but because I am seven. If the pain is not visible and the person in pain has not learned how to properly speak the language of anguish, it isn’t real. Not to the people who were supposed to help. They will not investigate further, will not run any tests because they are sure nothing is wrong.
The monster hides away again after that fourth night. Before it went, however, it did something to me. My mom asks me what I’m doing when I sit on the floor of the supermarket when we go out to grab groceries. The floor is gross, hair and grime no longer blending into carpet or patterned tile when one is so up-close to it. But I can’t walk anymore – I’m too tired and it hurts, I tell her.
The look of disgust that I’d sit on such a dirty surface melts into concern.
She asks me what I mean, and I tell her that my feet burn.
The monster has left its marks in me. My pediatrician won’t believe me about this either.
Without any treatment, things get much worse. After these first attacks, I can no longer stand for over twenty minutes without being in unbearable pain. My capabilities are permanently desecrated by the monster all medical authorities insist does not exist. Only my parents believe me. They continually fight for me, but every battle so far has been lost. We are always sent away, but by far the worst appointment I can remember was with one particular doctor.
“She’s sick—please. Why can’t you listen to me?” my mom begs.
“I am listening,” the doctor forcefully states.
I am at another pediatrics appointment sitting on the paper that always rips when you move even a little. At night, I feel like my body is on fire, but if this doctor can’t see its flames, can’t feel its heat, it’s not happening.
“She’s perfectly healthy,” he continues. He looks right at my mom, exasperated and unwilling to check to see if there could be anything more serious going on. “You’re just obsessed.”
The doctor says I am perfectly healthy, but I have been vomiting all night long. The pain in my back is like acid dripping, but it’s not visible, so it’s not real. Right? Maybe if I tell myself that enough, the pain will go away.
“We’ve been to every other doctor—nobody is looking into this! Why won’t any of you look into this?” My mom has gone about these appointments a million different ways. She has developed the proper logical argument, she has attempted to gain any empathy. But this appointment, this doctor with a stone-face who has openly stated his opinion of her as a mother, breaks her. She cries.
“This concludes our appointment. Please, relax and stop worrying about this. She’s not sick. She’s fine.”
Our desperation for answers has somehow done more harm than good—now no one listens at all. It’s just my parents, and it’s just me. Just me whose spine develops another lesion every day. Just me who can’t walk much at all anymore. Just me who’ll go blind soon. Just me, and I feel so alone.
At age eight, the monster comes again for eight nights. Nothing’s wrong, right? It’s the same outcome as always. The monster isn’t seen, so I am not either. I endure the pain, and this attack stops just as suddenly as it started.
We pretend to just ourselves that we believe the doctors. We try to build a life.
Despite my pain and weakness, I sign up for dance. After the dance recital I had trained all semester for, I walk down this long, beige hallway connecting the stage to backstage. I am suddenly struck by a horrible headache mostly behind my right eye. I tell my mom about it when she picks me up from backstage. I take ibuprofen. It still hurts, and it hurts bad. Although the pain is terrible, I do wind up falling asleep that night.
The next morning, when I wake up, I rub my eyes. I rub my eyes and something’s wrong and I run into my parents’ room.
“Mama, something’s wrong with my eye. It’s like I’m looking underwater. Like an aquarium. And it hurts a bit.” She looks worried.
“Do you think there’s something in it? I’ve gotten sand in my eye before,” she says.
I tell her it feels sharp. She spends over thirty minutes poking and prodding at my eye, trying to see if there’s something in it, an eyelash or something. Nothing is found. It’s a Sunday, so no eye doctors are open.
The next day, we head in to see the ophthalmologist. He sees that something’s wrong with the eye—the optic nerve is swollen, but says there’s nothing we can do to reverse or prevent further damage. He suggests it’s a tumor or multiple sclerosis. He orders an MRI.
We go home, and my mom is scanning the web for answers. She discovers that it should be treated with steroids—but when we call that same day, he says he won’t admit us to the hospital. That steroids are just a temporary fix. The monster has suddenly gone from invisible to inevitable.
The MRI is incredibly stressful, the loud buzzing and whirring of the machine as it takes images all but deafening. When we get the results back from the MRI, against the ophthalmologist’s opinion, we go straight to the ER.
Finally, we are taken seriously. But by this point, it’s too late. My right eye is permanently gone because if steroids aren’t administered within 48 hours of the loss of function, the effect on the damage is minimal at best. If the ophthalmologist would have admitted us, it is incredibly likely I would still be able to see.
It is so horrible that things have happened as they did. It is so horrible that in a single night, I am suddenly blind. Just in one eye, but that’s one eye too many. And although this is so horrible, going blind is the first time we are ever believed. This damage is our evidence. Our salvation.
Once we are taken seriously, it could be a dozen different diagnoses. We search for an answer. Bloodwork, another MRI, and a spinal tap are all conducted. It’s not multiple sclerosis or a tumor. The MRI does show lesions on the spine, damage to the optic nerves, and black hole lesions in the brain. We are sent home for now.
The bloodwork comes back at last, and then our doctor knows what it is. Although we all walk into that appointment, the doctor immediately sends me out into the hall. I sit behind the desk in the nurse’s station and the nurse tells me to color, handing me crayons and paper. She doesn’t say another word to me. Minutes pass, and the door opens, and my mother is crying but is trying not to let me see it. We all leave, and I don’t know what I have until we get in the car and then the monster has a name—Devic’s disease, or neuromyelitis optica spectrum disorder (NMOSD). It is an incredibly rare autoimmune disease affecting the spine, optic nerves, and in some patients, the brain. At the time, we are told it is about one in a million in adults and around one in ten million in kids.
The pain I’ve been experiencing has been from my own body attacking itself, eating away at my nerves’ outer coating and creating wounds inside of me called lesions. My fighter cells only know to eradicate what’s not an ally, and it can no longer differentiate that I’m not an enemy. The optic nerve in my right eye is pale and mostly dead. My brain has numerous lesions, and the ones on my brain stem are what was causing me to frequently vomit. The “extensive” lesions, as my doctor calls them, cover numerous sections of my spinal cord.
Time goes on. My mother searches the web for any information on this rare illness. Looking it up yields seven results total, one of which is a now-outdated research study of 88 patients with NMOSD, of which 24 died in the first five years. This information on the outlook of the illness haunts my mother.
There is no cure for NMOSD. Instead, I am upkept, like the maintenance of a car, burned with chemo after chemo, treatment after treatment. We have to keep pushing down my immune system to nothing because otherwise it will go on the attack again. Somehow, it keeps attacking anyway. We catch most of these breakthrough attacks within 24 hours and completely reverse the damage.
During one of these attacks, we head to the ER. Upon hearing my diagnosis, rather than treat me with steroids to stop the inflammation, the ER doctor tells my parents there’s no point. It’s inevitable that I will become paralyzed or blind. Why continue to fight it when that’s the case?
“Are we really putting Ireland through all these traumatic treatments for nothing?” my mother posts on my CaringBridge page.
Despite this doubt, we go elsewhere for treatment and fully reverse the new damage.
I become more stable. We go from chemo once every 3 months to once every 6 months after the attacks seem to stop, and today is just another treatment day. The nurse comes in, retrieving a small butterfly needle. She takes the plastic tip off. I watch as the metal slides underneath my skin. The blood shoots from my vein, sometimes coating a pillow or blanket, sometimes caught by a washcloth before getting that far. I always watch when they put the IV in; it hurts more when I do not look because fear is more painful than such a small pain could ever be. They flush a syringe of saline through. A metallic taste is in the back of my throat, I choke it down, just as I do any emotion while a nurse is present. Can’t have them think I’m weak, or anything. Next, they hook up the chemo. It begins its slow burn, pushing poison through me. It tastes just as wrong. If the pump rate gets too high, we slow it down. I know when it is too high because I can’t help but begin to cry. It feels like burning, like necrosis and decay crawling and scraping itself up my arm. Every thirty minutes, the blood pressure cuff annoyingly tightens. I went to the bathroom twice, at the two- and four-hour mark. Unplugging my IV pole from the electrical outlet and hobbling down the hall with a parent in tow is the norm now. I’m already growing weaker, my body rebelling against me, but the full effects are seen at the five-hour mark. At this point, the poison has run its course. I attempt to sit up but feel as though I am a ragdoll. My right arm retains basic function; the left arm, the one with the IV in, feels raw. The IV is removed and then we remove ourselves to eat something then drive home. I will take my painkiller and sleep. I know this pattern now—it is always the same.
Knowing there is not yet a cure for NMOSD and that things often only go downhill, I do sometimes think about what will happen next. I’m turning nine, ten, eleven, twelve, thinking about paralysis and the possibility of death, but most often, I think of blindness. I think of the people who are just like me but have it worse. I close my left eye, just to see what it would be like to not be able to fully use either one of my eyes. I attempt to maneuver through my house, torturing myself with the fear. I’ve become obsessed with the monster.
At thirteen, fourteen, fifteen, people say I made the right decision being a writer. If I were to lose the left eye as well, they say I could always utilize text-to-speech. They are trying to console me. I fear loss so much that I don’t allow gain – I avoid friends and family. I don’t exist in any noticeable capacity. I am a ghost, but I start to not want to be. I want to be seen, heard.
I am sixteen, seventeen. I have taken my hurt; I have created life from ashes. There is art in sorrow; not in experiencing it, but in remaking it, molding it. Sorrow recalled can become sorrow rewritten. If I can capture my pain, my turmoil, I can rewrite it. I can somehow make it tolerable. I can silence all the voices in my head by considering pain to be an ally, to be the most powerful artistic tool at my disposal. The truth is, I am just coping. Writing all this out is my only way of defeating the incurable.
I am eighteen, nineteen, still thinking about the monster inside me that hasn’t shown itself in years. I think of my friends and family with rare neuroimmune disorders and of all the people we have lost just this year alone. But I also think of the small smile and thumbs-up in the “infusion day, again…” selfies that litter our support group threads, the comments below reading “you’ve got this” and “stay strong” as well as green heart emojis in the same color as our awareness ribbon. I think of the joy of going home after an infusion day, the joy of regaining my strength just a few days later, the joy of surpassing nonexistent expectations. I think of all the doctors who inadvertently inspired me to become good with words to be able to advocate for myself to people who won’t fight for me. I know now that it is not that six-year-old’s fault for not knowing how to describe her body trying to kill itself.
As time has passed, I have grown more comfortable in creating a life. I used to be so afraid to build a life just to have it be taken from me. But holding myself back like that is not living. I’ve done so well, all things considered. The pain from all the nerve damage has gone from insurmountable to unsurprising to manageable, and I haven’t had an attack resulting in a loss of function in years. But a question still exists that I’ll never fully know the answer to—is the monster still there?
I have accepted now that I won’t know if the monster is still there. But what I do know is that right now, I am alive. It wasn’t this illness taking over my life that was inevitable—it was inevitable that I would develop the perseverance to endure it. It was inevitable that I would live this life, despite it not going the way I’d expected. It is inevitable that I will continue to fight against this.
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