Every time I see a St. Jude commercial on TV, I immediately mute it or change the channel. I’ve done this since I was 13 in 2019, when I had my own stays in a children’s hospital to treat a benign brain tumor, obstructive hydrocephalus and subsequent porencephalic cyst. I wrote about this time period and how it shaped my outlook on life last semester, but I’m afraid that this piece of writing on its own idealizes my experience. In reality, 2019 was the year I felt most lost and unable to fully express my emotions. Constantly going to doctors, getting monthly — at certain points, weekly — MRIs, missing out on school and constantly taking new medications just to stabilize the pressure in my brain completely stopped my life.
Before my first brain surgery, I went to four dance classes per week, took private voice lessons and was in all-advanced classes at school. I did community service for the National Junior Honor Society on weekends and had a leading role in my school’s musical. I was overextended, but I had such an inherent need to push my life forward without stopping — the idea of being stopped was one of the most devastating thoughts to seventh-grade Isabel. Once I got surgery, I would cry a lot — not just about my health problems, but primarily about my social and academic standings, about my big role in “Thoroughly Modern Millie” and what the reaction would be from people I knew regarding me now. Suddenly, I wasn’t Isabel. I was the girl with the brain tumor. And it wasn’t up to me to decide that.
For a period of time, I was extremely ashamed. Months went on, and the only people I willingly told about my surgeries were my closest friends. I would lie when people asked where I’d been and tell them that I went on vacation to London with my family. That obviously didn’t explain why I only showed up to school for half the day, though, but I was too consumed by my own health problems to worry that far.
All this to say — when someone is in and out of hospitals and navigating their way blindly through the weeds of major health problems, they typically don’t feel camera-ready like those kids in the St. Jude ads. Not to mention, they may not even feel like themselves. For about 10 months, I took Keppra — a commonly prescribed anti-seizure medication — twice a day, and after each hospital visit, I was briefly on steroids — probably so that my head didn’t fall off my neck? I don’t know. That’s a pretty tough combo. Those steroids made me irritable and constantly hungry, and Keppra rage is a known phenomenon when an individual taking Keppra becomes much easier to anger than normal. I never had full-on Keppra rage, but I’d be lying if I said Keppra made me a pleasant person.
For the most part, I was just frustrated and lost. My life was only about my health problems, and if St. Jude had the opportunity to use my story for one of their many emotionally manipulative ads, I think they probably would’ve passed over me and moved on to the next PICU room. Those campaigns need the perfect kid — just helpless and sad enough to guilt-trip the average person into giving them money. I’m not saying it’s bad to donate to a children’s hospital, but as someone who was in a children’s hospital, taking a kid out of their room while they’re actively in treatment — actively fighting for their life — just to film them for an ad campaign doesn’t feel like the right way to hawk national donations. St. Jude is primarily based in Memphis, Tennessee, by the way, so it would probably be a better use of your time and money to donate to a more local pediatric hospital if you feel the need.
What isn’t fully shown in those advertisements is that ongoing, major health issues aren’t just exhausting, but they make you mad. You feel helpless, and you feel like you’ll never get past your problems. You get caught in a never-ending cycle of medical issues, hospital visits, surgeries, medication and then new issues when your illness doesn’t go away with a one-and-done fix. It’s difficult not to feel defined by the amorphous thing that’s trying to kill you. If you or someone you know hasn’t gone through serious health issues, you may not understand this, but I believe no patient should have to act like things are fine the second they get discharged from the hospital.
The long-term effects of an extended hospital stay often feel isolating. For me, my situation was so specific that it felt like nobody could possibly understand how frustrated I was. I didn’t personally meet anyone with a similar experience until the summer after my sophomore year of high school — over three years post-op — and I didn’t meet a second person with another close experience to mine until this school year, almost seven years post-op.
Meeting and talking to those people, though, has immeasurably helped me feel less alone.
That moment, meeting the first person and learning we shared similar health struggles, helped me finally escape the all-consuming nature of my brain tumor. Sure, the pandemic certainly distracted me in between then and the two surgeries, but it also added a layer of “this is never going to end.” I was either isolated by my health issues or physically isolated by COVID. After that moment, though, I finally wasn’t alone, and my anger started to truly slip away. Someone else also had that anger, so I could let some of mine go.
It’s OK to be mad for years. St. Jude wants you to think that the extent of your negative emotions should be sadness, but I think it’s even better to get angry. Don’t take it out on others, of course, but take a kickboxing class. Talk about it with someone who has a similar situation. Complain about St. Jude Children’s Hospital for romanticizing these types of issues. Health problems affect every aspect of one’s life, so you have the right to express all the anger that comes with it. Fight off the struggle in every way you can, because if you stop fighting, you may also physically lose the battle — and the only thing worse than going through life-altering health problems is giving into them. Anger is your mind and body’s fighting response when there’s nothing else to do, so let yourself continue the fight.
Isabel Hoch is a sophomore English writing major who obsesses over very specific things for months at a time. If she writes an article about something, it means her friends haven’t heard her shut up about it in weeks. To get in a heated debate over something dumb (or hate on St. Jude with her), you can email her at [email protected]