People who live with spinal cerebrospinal fluid (CSF) leak find many ways to cope with this debilitating neurological disorder. For some, creating art is one way to help lighten the emotional load and process some of the experience.
What is a spinal CSF leak?
A spinal CSF leak happens when the dura mater (the tough membrane enclosing the brain, spinal cord, and cerebrospinal fluid) has a hole, tear, or other defect, allowing cerebrospinal fluid to leak out. This loss of CSF volume around the brain and spinal cord can result in a range of symptoms. For many people. severe positional head pain is the most common symptom of a spinal CSF leak. But not every person with a spinal CSF leak experiences head pain, and for those who do, it’s not unusual for that pain to lose its positional aspect over time. Even so, many people affected by spinal CSF leak are quite disabled by their inability to be functional while upright. (For further information on symptoms, causes, diagnosis, and more concerning spinal CSF leak, please see our Overview page)
“Inspire Your Heart with Art” Day
“Inspire Your Heart with Art” day, celebrated January 31, isn’t a serious national holiday, but it is a nice reminder to stop and appreciate the creative outlets we have available to us—even when bed-bound and grappling with brain fog, pain, and fatigue. Many members of our community are talented writers, artists, and musicians. And while having a spinal CSF leak can limit the ability to work and create art, art can still be a powerful tool—not only for understanding our own experience, but for conveying it to others. Here are a few examples of how some people have used visual arts to understand and explore the experience of living with illness.
Spinal CSF leak artistry
Judith
Judith, an artist and spinal CSF leak patient in Germany, has this to say about art and spinal CSF leak:
“Living with a spinal CSF leak has definitely affected the type of art I do, but also the way I have to do it. Not being able to be upright (and for me living in the semi-dark) asks for pragmatic adaptions, and a mindset of creating whenever it is possible, not necessarily when I want to engage in it.
My condition may have helped in expressing whatever was on my mind more directly, because my brain is always under huge physical trauma-like stress, which is harder to communicate with words than with pictures at times. So creating something became more important than pondering what people may think about the outcome, and that may have lead to some people being able to identify with my work, as it stems from a similar, unfiltered experience.
I can’t draw when pain levels are too high though, so that romantic view of art helping directly with distraction from pain doesn’t apply to me so much, as it is only pain management sometimes. It definitely gave me an illusion of normality, something to look forward to during the hardest times, and a passion that is important to help me withstand the relentless torture that often comes with the condition. Finding something that is more important than the pain, whatever it is for everyone, is important in many life circumstances. “
Here is some of Judith’s work. You can find more at her gallery website, Blackferk Studio, and find her on Instagram at judyintheskynet.
Sarah
Sarah has found that art apps have been helpful for her in creating art that portrays how she feels with her spinal CSF leak. She says:
“Spending most of my time in bed dealing with a debilitating spinal CSF leak and all its symptoms, as well as the anxiety, uncertainty, and depression that comes from being so ill and bedridden for years, I don’t have the usual stress and anxiety busters of my previous healthy life, which were cycling and hiking and being outside and being active.
Since I can’t do traditional art/painting as it’s too difficult whilst laying flat, I discovered an AI art app and began using it as a tool for me to make art that expresses how I feel while leaking, both physically and emotionally. AI has been my collaborator in the creation of art that transcended my physical limitations. I’ve found it to be just as therapeutic as making traditional art.”
Ashley
A few years back, we featured an interview with spinal CSF leak patient Ashley, who created art to express her emotions around her leak. As she put it, “I can’t take my pain away, but I can express it through art.”
