{"componentChunkName":"component---src-templates-article-tsx","path":"/familyhealthcare","result":{"data":{"primeArticle":{"slug":"familyhealthcare","excerpt":"Watching a loved one battle illness is never easy. Amid sadness and stress, there can be guilt, too.","headline":"Being the bystander","author":"Iman Baber","authorbio":"","authoremail":"","authortwitter":"","coverimg":"https://assets3.dailybruin.com/images/familyhealthcare/familyhealthcaremaincropped.1-70245680623e08176ccf672b79ca6df5.jpeg","covercred":"Cat Nordstrom","coveralt":"Illustration","articleType":"article","updated":null,"content":[{"type":"text","value":"Hospitals are cold. Very cold."},{"type":"text","value":"The doctors and nurses try their best to make it feel warmer. But I quickly learned that no matter how many encouraging words or comforting voices fill the air, they can never get rid of the solemn chill that hangs – a silence, a quiet suffering, a reckoning of pain and mortality that no one mentions yet everyone feels."},{"type":"text","value":"The emergency room waiting area was dark and quiet. Other than the receptionist filing paperwork at the front desk, I was the only person there. I shrank into the hard plastic seat, pulling my jacket closer to me to keep out the early October morning air."},{"type":"text","value":"I was only 9 years old."},{"type":"text","value":"The events of hours earlier replayed in my mind, over and over again. I remember waking up to choking sounds that were very, very close. I saw my little sister, her eyes rolled back and limbs flailing as if fighting off an invisible attacker. Sprinting to my parents’ room, I screamed that something had happened to Noor. My ears filled with the heavy thumps of paramedic boots. Mama held my arm, telling me to pack my bag because we’d take our car to the hospital, while Baba rode with Noor in the ambulance. I grabbed Noor’s favorite Rapunzel doll."},{"type":"text","value":"I’ll never forget the icy fear that filled my body."},{"type":"text","value":"“My little sister is dying. She’s dying. She’s dying,” I thought."},{"type":"text","value":"“I need to help her. I need to help her. But what do I do?”"},{"type":"line","value":"{\"filler\":\"filler\"}"},{"type":"text","value":"My little sister was diagnosed with epilepsy in 2012 after experiencing a nocturnal grand mal seizure, a type of seizure consisting of loss of consciousness and extreme muscle contractions."},{"type":"text","value":"Since her birth, my little sister’s life has been marked by hospital visits and doctors’ appointments – after the seizure, they increased tenfold. But the diagnosis of epilepsy was still not enough to explain all of the other symptoms she had experienced throughout her life."},{"type":"text","value":"Every hospital trip resulted in a referral that added a new specialist to our list: pediatrician, neurologist, rheumatologist, radiologist, pathologist, endocrinologist and geneticist. Each specialist ordered a new test: MRI, CT scan, electroencephalogram, sleep study, biopsy, genetic test and more. And each test would bring no answers or clarity. I don’t know which we feared more – the lack of answers or eventually getting one."},{"type":"pull","value":"{\"caption\":\"We know so much about this and hospitals, we might as well be doctors ourselves. ”\"}"},{"type":"text","value":"An additional diagnosis was eventually added alongside epilepsy, detected during genetic analysis – Noor had Cowden syndrome, a gene mutation that increased her susceptibility to cancer."},{"type":"text","value":"The syndrome is exceedingly rare, so much so that many of the doctors we were referred to didn’t even know it existed. My parents spent hours searching online, poring over each page and discussion forum for information to share with the specialists. My mother was an especially dedicated researcher and eventually could recite every symptom, term and statistic – information forever burned into her mind."},{"type":"text","value":"“We know so much about this and hospitals, we might as well be doctors ourselves,” we joked morbidly."},{"type":"line","value":"{\"filler\":\"filler\"}"},{"type":"text","value":"When my parents finally brought me from that cold emergency room to see my sister, I was met with the sight of her in a hospital bed, pale with IVs in her skin and monitors beeping around her."},{"type":"text","value":"Of course, that room was cold too."},{"type":"text","value":"I went to Noor and tucked Rapunzel into the bed right next to her, afraid to hug her lest I disturb the needles protruding from her arms. The nurses smiled and told my sister she would be OK because Rapunzel was there to do the tests with her."},{"type":"text","value":"That moment established my role in all this – one I would soon understand very well. If I couldn’t be the one researching her condition or talking to specialist after specialist, then the best I could do was be there for my sister."},{"type":"text","value":"Over the next few years, Noor took countless tests and sat through countless appointments. She needed several biopsies and a thyroidectomy after doctors discovered a cancerous tumor in the gland. Thankfully, they caught it early."},{"type":"text","value":"I spent long hours in waiting rooms with my parents, watching families like ours go in and out. I acquainted myself with different hospitals, getting to know the artwork hanging on the walls, the beds shaped like firetrucks, and the little bumblebee toys nurses gave kids before their surgeries to calm them down. I knew to bring dolls for when my sister would wake up – Rapunzel, Merida or Pinkie Pie, because those were her favorites. I reminded myself to go to Noor’s teachers to get the homework she would be missing and go to the attendance office to excuse my own absence."},{"type":"image","value":"{\"alt\":\"Illustration of Iman’s sister holding the dolls\",\"url\":\"https://assets3.dailybruin.com/images/familyhealthcare/prime.familyhealthcare.sister.1-d3b5dbfa2cba4f60d58005e04cfa7a41.png\",\"credit\":\"Cat Nordstrom/Daily Bruin\",\"caption\":\"\"}"},{"type":"text","value":"I am grateful to say that, now, those days feel far away. Noor’s health has improved, and she no longer needs medication for her epilepsy. She hasn’t had a seizure in years. But I would be lying if I said those years didn’t change my family and me."},{"type":"text","value":"When you’re a bystander to a family member with illness, you feel a sense of helpless guilt. You see your loved ones go through the worst of pain, and you feel there’s nothing you can do about it. It hurts. It really hurts, but you tell yourself you’re not allowed to be hurt. You are not the one constantly cut open with scalpels or prodded with needles or placed in dark, cold machines. You feel your sadness is nothing next to what your loved one goes through every day."},{"type":"text","value":"But you are still affected by everything that happens."},{"type":"text","value":"I remember crying in the school counselor’s office every time she asked how my sister was doing. I remember the terror of waking up to one of my sister’s many seizures. I remember working on a science report about Cowden syndrome and stumbling across the Google inquiry, “Life expectancy for patients with Cowden syndrome.” My heart jumped into my throat, and I closed the browser, running to Mama sobbing."},{"type":"pull","value":"{\"caption\":\"You feel your sadness is nothing next to what your loved one goes through every day.\"}"},{"type":"text","value":"I don’t tell my family the real reason I sleep with nightlights on is because sometimes, when it’s 3 a.m., and I can’t fall asleep, and I can hear every creak of the house and every gust of wind and it echoes in my ears, I have to convince myself that, no, those sounds aren’t coming from my sister’s room."},{"type":"text","value":"I don’t tell my family that some days, after a particularly bad nightmare, I just sit in bed grateful I still have Noor with me."},{"type":"text","value":"My family knows I want to pursue medicine because I want to help people like us. But what I don’t tell them is the debilitating sense of dread I feel about losing patients. I’m afraid of being unable to heal their pain."},{"type":"text","value":"I don’t want to be just the bystander again."},{"type":"image","value":"{\"alt\":\"Image of a night light glowing\",\"url\":\"https://assets3.dailybruin.com/images/familyhealthcare/prime.familyhealthcare.nightlight.1-982464c39db9355756939d006534f6d1.jpg\",\"credit\":\"Cat Nordstrom/Daily Bruin\",\"caption\":\"\"}"},{"type":"line","value":"{\"filler\":\"filler\"}"},{"type":"text","value":"In the summer of 2020, during the early days of the COVID-19 pandemic, sickness struck my family once more."},{"type":"text","value":"Inexplicably, Mama fell very ill. Her fever remained for a month. She felt fatigued easily and couldn’t talk much. An ache traveled from her throat to every limb, leaving her bedridden and nearly voiceless. Every week, she said she would only go to the ER as a last resort."},{"type":"text","value":"She went to the ER three times over the course of two weeks."},{"type":"text","value":"I felt like I was reliving a bad nightmare: Again began the cycle of referrals to specialists and orders for tests. Only this time, tests never brought answers. Every COVID-19 test came back negative. There was no climactic diagnosis that could explain my mother’s pain. I thought the universe was playing a cruel joke."},{"type":"text","value":"Mama recalled that when she went to doctors for Noor before the seizures began, they turned her away and said her concerns were unwarranted."},{"type":"text","value":"“They said I was being a paranoid mother,” Mama told me. “But I knew something was happening.”"},{"type":"text","value":"And now, doctor after doctor told my mother her symptoms were just in her head."},{"type":"text","value":"“It’s all stress,” they said. “It’s all stress, it’s all in your head, and you need to relax.”"},{"type":"text","value":"But the psychiatrist said stress doesn’t cause the symptoms my mother was feeling."},{"type":"text","value":"What was already a trying time for the world became even more so for my family. With now two immunocompromised family members, any trip outside came with debilitating anxiety. My sister became extremely vigilant about safety protocols, developing a calculated rage against those who flouted the restrictions. She angrily condemned them, wondering why some people would willingly put themselves and others at risk of being hospitalized."},{"type":"text","value":"“I’ve been there,” she said. “Not fun.”"},{"type":"text","value":"The reality of the pandemic faded into a tense routine. My days began with my 7 a.m. Zoom class then washing dishes and making breakfast for the family. Time between homework assignments went toward making meals and cleaning. News updates remained ever present – headlines trailing on the TV until the same stories eventually played again. My sister and I reminded my mother to take her medication because it would make her feel better. Every day, my father told us we needed to be strong because it was our job to help Mama."},{"type":"text","value":"I felt lost in the fragile monotony – the world had turned upside down. My mother’s previously pragmatic demeanor had now broken down into hopelessness. She remained confined to the bed and couch. Any physical exertion left her in pain."},{"type":"text","value":"When Noor was sick, I tended to remain hopeful and cheery. With my mother, I cried every day. The pandemic and the increased risk it posed to my family coupled with the academic stress of applying to colleges and now my mom’s illness, pushed me to a breaking point. I developed a new routine – disappearing to the bathroom to let out a strangled sob then washing my face to hide the evidence."},{"type":"text","value":"I was plagued by guilt. In my mind, my tears were unwarranted compared to the pain my mother and sister were enduring. What was I doing? Being there for them? I was trying, but it seemed that there was nothing I could do to help them feel better."},{"type":"image","value":"{\"alt\":\"Image of Iman crying into a mirror\",\"url\":\"https://assets3.dailybruin.com/images/familyhealthcare/prime.familyhealthcare.mirror.1-92dbaec51364cd6107236ddc8334228b.png\",\"credit\":\"Cat Nordstrom/Daily Bruin\",\"caption\":\"\"}"},{"type":"line","value":"{\"filler\":\"filler\"}"},{"type":"text","value":"Mama is doing better now, her symptoms less severe. Noor is doing well too. Of course, there are always bad days, but we’ve learned as a family that the best thing we can do is be patient."},{"type":"text","value":"Despite their improvements, writing this story was still difficult. It took a long time for me to acknowledge I even had one to tell."},{"type":"pull","value":"{\"caption\":\"I don’t want to be just the bystander again.\"}"},{"type":"text","value":"Even now, sitting here having written thousands of words about my experiences, there is a nagging voice in my conscience. I find myself questioning my own memories and feelings, scolding myself for having the audacity to write this at all."},{"type":"text","value":"Because when you’re the bystander, it isn’t your story to tell, you say to yourself. You’ll never feel that those experiences are rightfully yours, even if you were there for every moment, every second along the way. But no matter how much you deny it, those events affected you and left their scars."},{"type":"text","value":"You can’t see those scars, though."},{"type":"text","value":"My sister has a real, physical scar sealing the place they removed the organ from her neck. Not me. So how could this story possibly be mine?"}]}},"pageContext":{"term":"winter22","slug":"familyhealthcare"}},"staticQueryHashes":[]}