Side effects may include but are not limited to: hours of appointments and tests, mental health struggles, control issues, inability to feel normal even years after treatment and PTSD.
Emma Parker is nineteen years old, and a freshman at the University of Iowa. She is majoring in Social Work with a minor in Social Justice. Emma is fierce, witty, full of humor and always bubbly. Her energy is one that isn’t found in many people, so you’re lucky to have her in your life if you do. She spends her free time binging Cody Ko and Noel Miller, listening to all kinds of music, reading, adoring art and adding to her beautiful boards on Pinterest. Emma is magic and is without a doubt the definition of how people are collections of their experiences.
Most seven-year-olds are learning to ride bikes, living out imaginary lives in parks, climbing trees. Most nine-year-olds are watching movies, learning math and reading books. Most fourteen-year-olds are developing crushes, learning what they like to do and trying to fit in.
The reality is, most seven-year-olds don’t know what hospital beds feel like unless they’ve been hurt or sick. These seven-year-olds get to leave after a day or two. Most fourteen-year-olds don’t know which vein IVs go into best. Because, why would they?
At the age of seven, Emma was diagnosed with juvenile rheumatoid arthritis. At the age of nine, she was diagnosed with Crohn’s disease. At the age of fourteen, she was diagnosed with Chronic Recurrent Multifocal Osteomyelitis.
Since 2007, Emma has spent countless hours in and out of children’s hospitals. She began her treatment at the University of Iowa pediatrics department, transferred to Mayo Clinic in Minnesota at the age of eleven, but ultimately returned to the university to continue her treatment when she was fourteen. Going back and forth from her home in Cedar Rapids to Minnesota was too exhausting for both her and her mom.
On Emma’s fifteenth birthday, she came into the hospital for an infusion she was supposed to have the night before. They tried, and they tried, but they were struggling with the needle, so they told her to come back the next day — her fifteenth birthday. What Emma wasn’t aware of is that her favorite nurse, Brianne, had her husband go to HyVee at 5:30 that morning, and get Emma a cheesecake. Cheesecake is Emma’s favorite, and the nurse knew that.
On Emma’s fifteenth birthday, she was sitting in an infusion chair but was greeted by her favorite nurse with cheesecake and homemade cookies. She also brought up a therapy dog to sit with Emma during her infusion. Emma, while reminiscing, explained that this was the day she realized how much the nursing staff cared about her. Brianne even attended Emma’s grad party last year.
This memory is one that can be looked back on fondly, but they aren’t all like that. When you live a large amount of your childhood in and out of hospitals, it’s easy to slip into a darkness. What they don’t tell you about “sick kids” is that depression is a significant side effect. Sitting in a hospital bed, surrounded by white walls and beeping machines, it’s difficult to not lose your sanity, to feel like you’re being held, hostage. It’s a prison, but a prison that is necessary for survival.
Many mental struggles can be developed inside these walls. Emma has anxiety even seeing hospital beds. Emma explains that even now, in remission, she feels self-conscious about how she walks when she’s in pain. Through her years of treatment, she recalls feeling hopeless and alone.
Doctors and family know to ask what hurts, but they don’t ask what hurts inside of you. Children’s hospital childhoods leave their mark for years to come, manifesting in different ways. PTSD, anxiety, depression, control issues, inability to feel normal even years after living a “normal” life. The darkness from hospital days lingers into teenage years, something the “patient” is forced to deal with even after finishing treatment for their physical illness.
The darkness, the self-loathing, the depression, the pain; it’s a lesson. It hurts, but it hurts so deeply that there’s no choice but to learn from it. Emma learned a lot from her years of hospital visits.
“Everyone has a valid challenge. Everyone’s experiences are valid. In the moment when things are terrible, you’re hating your life and sometimes you don’t want to live your life anymore, it sucks. But when you’re recovered and in remission, you love who you are more and feel like you’re a better person because of these experiences.”
Sitting in that hospital bed, even surrounded by other children dealing with similar issues, Emma felt alone. Being told that she wasn’t alone, somehow, made her feel that much more isolated. She explains that she’s met a multitude of people who also lived children’s hospital childhoods, and each person had similar experiences. She worries about the children in what used to be her position, going through what she went through, now. If she had the chance to give them some advice, this is what she had to say:
“Your pain is valid regardless of what you’re going through, not just the physical pain but the mental pain as well. As cliche as sounds, you’re not alone. Regardless of how many times you hear it, it’s very isolating. You feel like you’re the only person going through it, and that’s just not true. It may take years to go into remission, but it does get better. The pain is alleviated. As much as it sucks to be a hospital kid, it’s going to be okay.”