Two Places at Once
Life on the Oncology ward of a Children’s hospital is a balance of knowing. On one hand, from the moment you walk into the space, you know you’re safe. The walls are full of colorful painted butterflies and the floor to ceiling windows let in a penthouse view of the surrounding city. The nurses smile at you and give you warm blankets. You know everyone’s name. It’s the only place in the world you’ve ever seen another bald person your age and you get excited to see your patient friends. The space goes out of its way to tell you that everything will be okay — you know that you’re welcome there.
On the other hand, you know why you’re there. You know you’re there because your three year old daughter has just been diagnosed with leukemia or your son’s sixteen year old girlfriend found a lump somewhere she shouldn’t have. You wake up every single morning in the same room, with the same people, and do not get to leave. You also know, based on the looks on all of the adults faces, that this somehow the worst place they will ever be, and everyone there would give anything in the world to leave — to see something other than the painted wall butterflies, the smiling nurses, and the same bed room that they have for the last hundred days.
A Children’s Hospital is both the best and the worst place in the entire world.
In July of 2018 I received a bone marrow transplant at Nationwide Children’s Hospital in Columbus, Ohio. Being in transplant requires extreme isolation — you are not allowed to leave your hospital room for any reason until your brand-new marrow beings to grow. I was allowed to have the same five visitors the entire time I was admitted, and my partner was the only outside person who came to visit consistently.
Once or twice a week, after my partner was done with college classes, he would come up to the oncology floor, Lysol down his bag and hands, and then carefully come into my hospital room and sit on the other side. We were, of course, not allowed to touch. When you have no immune system, just a cough in the wrong direction can end your existence. And so, he sat separately from me — watching me from the other side of the room while we tried to figure out how to manage the distance. Being in a relationship without touch and sex and outside experiences — for two people in their early twenties sitting in a hospital room together for eight hours a day — proved to be an adjustment. But despite where we were, technology helped us make the most of where we were.
For me, the largest chasm in my hospital life was my relationship with the outside world. Living inside one, single room all day long every single day for a month felt absolutely insufferable without stimulation — I suddenly understood why zoo animals perked up so much when their keeper brought them enrichment activities. I wanted more than anything in the world to go outside, and my partner decided that he was going to do everything in his power to bring the outside world to me. Since my lockdown prohibited anything biologic entering my room, he spoke to me in his love language: pictures. As a photographer, he spoke to the world in images, and so he shared the world he saw with me. He started sending me pictures of every single “good flower” he saw throughout the day and then escalated into leaves as the trees began to change. Each day, he sent me a picture of the “best leaf” he found on his way to class and then followed it up with videos of the birds singing or the clouds blowing by. He sent me pictures of dogs, cats, and birds. He made a point to video chat me when he went somewhere beautiful. It was a semblance of being involved in outside life.
I further indulged my fantasy of the outdoors by planning extravagant vacations to the national parks. I planned out itineraries and searched for interesting facts about the different locations. I planned out the road trips, the airplane rides, and the hikes. I even planned a week long vacation to Disney world Paris and lived vicariously through videos and pictures. My partner listened to me recall all of the places we’d someday go together for hours. He also listened to me cry when I realized that I wouldn’t be able to fly internationally for two years. I wouldn’t be able to go anywhere outside of Columbus, Ohio for at least one. My sense of escapism was both wonderful and dreadful.
Halfway through my admission, my partner came to visit me and brought along a gift. At first, I was confused as to a possible occasion, but then I realized what I was holding. He had come up with the idea to buy me a Google Cardboard VR set — 15 dollars online and usable with a cell phone.
“Now,” my partner said with a smile, “You can leave.”
I unfolded the cardboard headset and slipped my phone inside before letting out a gasp. I was standing in the middle of the Grand Canyon. I set up a Lysol-downed play mat on the floor, hooked up a playlist of nature sounds, and found a pine needle scented essential oil to infuse. My partner had somehow found a way to help me escape. To this day, it remains the most meaningful gift I’d ever received.
Of course, I knew that it was only a piece of cardboard, unfolded and stuck together with velcro. I knew I was still sitting in a hospital, surrounded by the walls I’d been staring at for thirty days. But when your world is small, the slightest bit of something new means the entire world.While I knew where I was, I also knew that I could get some semblance of relief. I had a vision that my current reality wasn’t going to last forever — my reality was no longer all there was. I could be two places at once.
Technology is an accessibility tool, not only for utility, but also for quality of life in clinical settings. Video chat and photographs can give patients a sense that the world outside still exist and give patients a sense of social inclusion. Virtual Reality can take patients outside of their little hospital rooms for just a moment of a feeling of fresh air. But most of all, technology can give patients a sense of hope for something else. There is no better encouragement or inspiration than believing that someday you could actually go to Disney world, visit Scotland, and sleep under the stars again.
This piece was written for an undergraduate class focusing on Writing for the Web meant to share my experiences with technology.
Thank you for the support!