I spent a lot of my childhood in and out of hospitals. Whether it was for therapies or co-morbid and co-occurring conditions I was not a healthy child. However, even though I spent so much time in and out of medical settings, my mom made my childhood feel normal. Therapy nets were just another fun thing to play with in our basement, and when I was too sick for a whole year to go to school due to a brain injury she home-schooled me and made me feel like a normal kid. This is not to say that being sick was not frustrating– it was. It seemed at times that as hard as I tried to surpass the medical expectations that I would only ever live in a group home to be forgotten without attending school, holding a job, or living in the outside world, illness brought me five steps backwards every time I began to succeed. At a young age, I learned the value of every day we are given here on earth and that our health is easily taken.
In my earlier childhood, doctors were concerned I was suffering from seizures. My meltdowns were confused as seizures to outsiders and it is not uncommon for autistic people to suffer from them. As a result, I spent a week in the seizure unit so I could be monitored. I was fortunate in that I have never had a seizure. The following post is my personal recollection of this particular hospital experience.
All I can focus on is the itching and sensory overload of individual electrode monitors as the doctors place them on my scalp. They are gooey and sticky. My head is wrapped to keep them in place. I feel like a helmet head.
My room is just like any other hospital room. Sterile, white, and the usual hospital smell. I hear the hum of the florescent lights and the whirring of machinery. My mother as always, never leaving my side. Every so often, someone comes in to check on me. They are reading my brainwaves. Something about monitoring for potential seizures. I do not really understand what that is, but it sounds serious.
There is also a camera. During a check in, my nurse and I are sitting behind the couch on the floor. The camera begins to move. She waves at it. “They can’t see us, it’s trying to find where we are,” she says. The camera finally sees her waving and stops. Now I have a fun game. I try to hide from the camera on to make it move. I must not be great at hiding because it doesn’t move again even when I try my hardest.
A boy is staying in the room across from me. He has the same helmet head and is probably about my age. We are both so young but there are only children in here as far as I can tell. Every day I go to the threshold of my door frame and he goes to his. We play catch. I’m not one for socializing but he seems nice and I do not care for this place. I am happy to be distracted from the sensory nightmare on my head. We cannot move too far outside our doors because we are attached to monitoring devices. Me playing catch is always a laugh. I can’t remember a time I was actually able to catch a ball. Unlike other children, this boy doesn’t make fun of me for it. He is patient and happy to play.
Every day I try to scratch my head. Hoping to take this helmet off. I hope they find what they are looking for. Days pass. Throwing the ball with the boy across the hallway becomes my new preferred routine. It gives me structure and play in this strange place I must be in.
I do not sleep well. But who does in hospitals? I wonder if the boy and others are here for the same tests. I enjoy occupational therapy and other tasks doctors have me do. I see them as a test I can pass. My fine motor skills are still frustratingly inaccurate. I also do not like when my spatial skills are tested. How do people visualize how much space something takes up?
One day I wake up. I’m not sure how much time has passed; I have never had a sense of time. No matter where I am my days seem to run together, the only differentiation being when the sun goes down. Maybe that has something to do with these spatial relations others seem to have. It is also especially hard to keep track of time in this place. The doctors have a conversation with my mom. The next thing I know, they tell me I am being released and the helmet is coming off. I am ecstatic. Not caring to know the results, my world only consists of getting this helmet of sensory bombardment off my head.
As it is removed I feel relief. My hair is messy and sticky. I am excited to wash it. We are given the good news that I do not have seizures. As I leave the hospital I briefly begin to wonder what became of the little boy. We were not able to play the last day. I believe he left before I did. Or maybe he was still there but couldn’t come play that day. Is he more sick than I am? I wonder if he is OK, if he has been released like me. I never find out.
I leave not knowing what’s ahead of me and leaving my game of catch behind. Wishing for the first time I could have had another social interaction. For the first time, feeling connected to someone I didn’t know at all.
How can this be, I wonder.