To learn how magic helps kids heal, we asked a patient.
A patient’s perspective on Open Heart Magic: An interview with Melissa Bruebach, a recipient of Bedside Magic at Lurie Children’s Hospital.
Q: I understand you’ve had firsthand experience with Open Heart Magic.
Yes. When I was a patient at Lurie Children’s Hospital, I had several visits from the Hospital Magicians.
Q: Most people don’t know what it’s like to be a kid in the hospital. Can you share your experience?
Well, I started having surgeries as an infant…and pretty much grew up in the hospital. Unless you’re a kid or a parent with a kid who’s gone through this, you don’t realize how scary and stressful it can be. Children with medical conditions experience things – and miss out on things – that make them grow up too fast.
I remember when I was 12; I was having my third and final spine surgery. I was excited because I thought I might magically come out looking like a normal kid. But when I saw all the tools they were going to use on me, I was terrified. I woke up from that surgery in more pain than I ever imagined. I missed a month of school, friends’ birthday parties – and everything in between.
Q: That would be tough on anyone, let alone a kid. Were there other things you missed through the years while you were in the hospital?
Well, I missed my 21st birthday. On the day of my birthday I was admitted for surgery on my leg, but then suddenly I needed emergency brain surgery. I was never so scared. The last surgery I had the month before, I couldn’t remember anything for weeks. I was terrified that would happen again. The surgery went okay, but I had to stay in the hospital for 10 days while my leg healed.
Q: Do you think missing out on those special memories is the hardest part for kids in hospitals?
I know I didn’t enjoy having to spend my 21st birthday in the hospital. All in all, that last year was not easy. I had four brain surgeries and spent 47 days in the hospital, 26 of those days in Intensive Care. After one of my surgeries, I had serious complications. My leg had severe nerve damage and I had a massive bedsore with the bone almost exposed. When I finally woke up, I learned I’d been in a drug-induced coma and slept through the first weeks of my junior year in college. That pain from my damaged nerve was the worst I’d ever experienced. But for me, the hardest thing was losing my independence. Having to hold someone’s hand to walk and be supervised in the shower was devastating.
Q: Can you talk a bit more about losing your independence and why that was the hardest thing for you?
Whether you’re 2 or 22, it’s very scary laying in a hospital room with people rushing in and doing unfamiliar, scary things and having no control over the situation. I grew up dealing with pain. I got used to the ORs and hospital rooms with all the beeping machines, bright lights and scary-looking people in masks. But through all my years in the hospital, I tried to keep some sense of control and independence – even if it was as simple as knowing how to unhook my monitors so I could go to the bathroom on my own. As a kid, I remember that even having the control to rip off my own bandage made the pain not as bad.
Last year, I lost what little control I had figured out how to get. When I woke up from surgery that time, I panicked because I couldn’t breathe. They sedated me and re-intubated me and after that nothing was under my control. I couldn’t walk on my own…or shower on my own…or make decisions on my own. I was constantly being told what medicine to take, how to take it, and when. I couldn’t check my meds before they went into my IV like I normally would have. The drugs they gave me were supposed to make me forget how bad the first few weeks were. But I couldn’t even remember my nurses from the last time I saw them. It was very stressful having “strangers” coming in and out to take care of me. I couldn’t bond with my doctors because I couldn’t remember them. And that bond is important; even the most painful procedures are less stressful if there’s someone there you know and trust.
Q: What goes through your mind when you’re in the hospital for an extended time?
Being in the hospital gives you too much time to think. I thought a lot about missing my junior year of college. I thought about not being able to graduate with my class. I thought about the excruciating nerve pain that could flare up any time and stay with me forever.
Four surgeries in a year was a lot to handle when I was 21. I really don’t know I dealt with all that when I was 2 years old or 4 or 7. But I do know that what Open Heart Magic is doing really makes a difference. If the magic is this incredible for a 21-year-old, imagine how awesome it is for a 7-year-old!
Q: What was your first experience like seeing a Hospital Magician?
When I met my first Hospital Magician, I was still too medicated to appreciate the magic. But my family loved it! And that’s important, because families need some relief in staying strong for a child who is sick.
Besides my parents, my cousin Emily has been my biggest supporter. She’s had to deal with some scary stuff, including days when they didn’t know if I would live. I know the magic helped her, too. I remember her taking home the magic wand the magician gave her and taping it to her dorm room.
Q: Most people don’t realize Hospital Magicians aren’t just there for the kids, but for their worried, exhausted families. Did you get to experience the magic later on?
Yes. I remember I met my third Hospital Magician after my fourth brain surgery. I had a rod in my skull and looked like something out of a horror movie. Another 10 days in the hospital and Emily was doing everything she could think of to distract me – from making surgical glove balloons to walking around with her nose taped up like a pig!
Emily was running out of tricks when our Hospital Magician walked in. And then, for a while, I got to forget that I looked like Frankenstein. I forgot about the tubes and beeping machines I was attached to. Our Hospital Magician distracted us from the craziness of our lives with a good kind of crazy. He distracted me from feeling exhausted and emotionally spent and gave Emily a break from being my personal entertainer.
Q: Do you think Bedside Magic helps hospitalized kids get back some of their independence and sense of control?
Absolutely. But you’re having so much fun, you don’t realize it’s happening. They start by asking if you want to see a magic trick – and who doesn’t want to see a magic trick?! But the fact that they ask you and give you the chance to say “yes” or “no” gives you a sense of control. Then they ask you for a magic word. Kids feel special it’s their magic word that makes the card disappear – the trick becomes their trick. At the end, the magicians teach you a trick, which is probably the most special part of the experience. Giving a child the power to do something and know something that other people don’t is an incredible gift. Kids feel more confident in themselves. It gives them a sense of control and something to look forward to. Now when a new person comes into their room, instead of feeling scared they get excited because they have a new audience to perform their magic trick for. I’ve always believed laughter is the best medicine and it’s so true in this case. Even though I was one of the older audiences, I was shocked when I couldn’t figure out their tricks! They made me laugh and forget where I was and how tired and stressed I felt. The whole experience was in my control because, every step of the way, the magician would wait for me to give the “ok” or say my magic word. That was really special. A simple magic trick can do wonders for a kid in the hospital.
Q: Did your experiences with Open Heart Magic inspire you in any way?
Yes, in so many ways. They inspired me to want to help other kids who are in situations like mine. Open Heart Magic is such an incredible organization. I got to know it inside and out, first as a patient seeing the magicians, and then at their annual Tricks are for Kids Benefit where I met so many of the people involved. Now that I’m finally on the mend, I’m going back to school and plan to graduate in two years. When I come home for good, I won’t be done with school quite yet. I’m going to attend Magic University and become a Hospital Magician! The people involved in Open Heart Magic are the kind of people you want to surround yourself with, because they inspire you to be a better person each and every day. Knowing I could do something for a child and see the impact as it’s happening is an incredible thing. Being able to give a child something that will help them in the hospital and beyond is an amazing gift. Kids can be so inspirational if adults just stop and listen to them. They can teach us so much if we just pay attention.
Q: Are Hospital Magicians different from other hospital volunteers?
There are no other volunteers like them. When you’re a kid in the hospital, having your own Hospital Magician walk into your room is an experience you never forget. Hospital Magicians don’t just perform magic – they make kids and families part of the magic. When you’re a kid missing part of your childhood, learning a new skill like performing magic for others can be so empowering. If you can do magic, you can do anything! You go from not knowing what to believe in to believing in yourself.