I believe art is a powerful tool a person can use to recover from trauma.
Art is therapeutic. The variety of art forms allows anyone to express their thoughts and emotions, regardless of skill level, personal history, or current condition. Art can be physical, like dance, sketching with paper and pen, or painting with watercolors. It can also be mental, like writing or making digital music. Those who are sick can still create regardless of the extent of the damage or disability they experience.
The accessibility of art also means anyone can get started and develop skills regardless of their initial capability. You don’t need to meet a talent threshold to create—all you need is to set aside the time and give yourself the grace to make something, to do something, even if it’s ugly at first.
Abstract art can be easy to access because abstract art doesn’t have any set guidelines and can appear in whatever form the artist desires. Regardless of art form, the creation process itself is fun and challenging. It’s a simple way to start setting goals for life again, like finishing that poem, that sketch, that needlework. Setting goals again is vital when recovering, especially when the future is unknown.
When my Neuromyelitis Optica Spectrum Disorder (NMOSD) was at its worst, creating helped me to feel like a real person again. It was a helpful distraction against the monotonous torment of hospitalization after hospitalization. Knitting, braiding, drawing, writing, singing—I’d find something to do that kept me going.
As I aged into my early teens, I began fervently pursuing different dreams. I thought for a long time about working in medicine to help others in the same situation as me. But I don’t think I could step into a cold doctor’s office every day and tell a mother that her child has a seemingly endless string of syllables for a diagnosis. I also tried acting in local theater groups just to pretend to be someone else. In my late teens, I buried myself in school – taking classes in unrelated fields from computer programming to philosophy to pottery – trying to find that something I was missing. By pursuing these dreams, I sought to get as far away from my illness and my bad memories as possible. But in wholly rejecting my illness, I was also partially rejecting myself. Thus, I have chosen to use art to finally face the reality of being ill and still being me.
Although I did not choose this life or this body, this is my life. I will not wait to live until I reach a certain arbitrary point of “better.” I recognize that I’ve grown up with this “monster” hanging over me, a foreboding feeling that continually shouted inside of me that something would soon go wrong again. I felt certain that I would go blind again, become paralyzed again, and lose this life I built from less than nothing again. In seeking to fight this fear I was drawn back to art.
Art can be a distraction against trauma and a weapon to combat it. Learning to write and developing my skill allowed me to sift through and translate the pain, fatigue, and trauma that come with a rare diagnosis. After spending much of my life avoiding my illness, it might seem like I would not like to write. But I’ve come to the realization, as time has passed from a week of being sick to a decade of living with NMOSD, that I can’t seem to drop it.
Not a day goes by when I’m not looking through a good eye and a partially blinded one, not a day without some pain. I’m not the kind of person that can keep soldiering on and ignoring the years of pain and fear of relapse. I write because I can’t stop thinking about Neuromyelitis Optica. I remember crying in a hospital bed, the ugly and mind-gnawing sound of the heart monitor, the small plastic electrodes adhered to my eight-year-old chest and tummy, the all-consuming pain of a spinal tap, and how I thought I’d crush my mother’s hand with how tightly it was strangled in my clutch. I can’t stop analyzing, interpreting, and presenting my life’s events to my own mind. So why not just take these words that spiral around inside me like a song on incessant repeat and put them down on paper?
Art is how I fight back and self-soothe. I fully believe that by writing, I’ve taken all this hurt inside of me and created a life from what were only the ashes of my ruined childhood. I have discovered the possibility of art that exists within sorrow; it’s not present in experiencing it, but art is there when remaking and molding it. Sorrow recalled can become sorrow rewritten. If I can capture my pain, my turmoil, I can rewrite it. I can make it tolerable. I can silence the story in my head by reconsidering the pain of it to be an ally, to be the most powerful artistic tool at my disposal.
Art can also inform those around you. Outsiders to the rare disease community can see and learn from art, and awareness can grow for these rare illnesses in a way scientific papers can’t accomplish. An outsider, like a friend or neighbor, isn’t going to read through and immediately understand the most recent research paper laden with jargon words like, “anti-myelin oligodendrocyte glycoprotein antibody”, or even “demyelination”, because they’ve never needed to know what these words mean. But anyone can look at a drawing or painting or poem and walk away with, at the very least, a vague understanding of a person’s experiences.
Art can inspire insiders to rare illnesses, like patients, caregivers, and medical professionals. Personally, I really love this community—the Facebook groups, the organizations, and the people. I know so many of your names, and I know a few of you recognize mine. If I ever feel afraid to put myself and my memories out into the world, I look to you and begin to ask myself questions. What if a single life is changed because I was brave enough to publicize my story? What if another person can look at me the way I looked at Christine Hà, winner of Master Chef season 3, who won based on her own merit despite her illness? Or Ali Guthy, the daughter of Victoria Jackson, the first teen girl I’d ever met with NMOSD, and the first teen girl to ever look at me like I wasn’t ugly after steroids changed my body and destroyed my self image?
I want to be like them. I want to be a good writer based on my own merit. I don’t want to be a good writer “for someone who is sick.” The same way I’m sure Christine Hà doesn’t want to be a good chef “for someone who is sick.” I want to look at and present my stories and other people’s stories with the mercy and grace of Ali Guthy rather than allow my self-deprecation and judgment to fester.
I felt so trapped by my illness. I was diagnosed with NMOSD at age 8, but between ages 10 and 15, all I could think about was the possibility of things getting worse. The uncertainty of what the future could hold, particularly with relapsing conditions, can freeze you in time. Having gone blind overnight at age eight, I spent night after night fearful that I would wake up having gone blind once more. When I started writing I finally felt a degree of control again.
When so much freedom has been taken away, the things you can choose become infinitely more liberating. Creating art is a series of choices: what step to take in a dance, what word to type first on a screen, or what color to use to paint. Creating something means choosing again.
I have chosen that I am a writer.
Our “In Their Own Words” blog posts represent the views of the author of the blog post and do not necessarily represent the views of SRNA.
