invisible illness

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By: Fela M'tima Dunfee

November-27-16

 
 

FELA- Hey Gabriela! Let's start off by your name, age, where you're from, and what disease(s) you battle?


GABRIELA-Gabriela Leskur. 22. Cleveland, Ohio/Croatia. The last one is hard because I don't really have a concrete diagnosis. I suppose it's best to say I battle depression, anxiety, chronic fatigue, Factor V Leiden and chronic ovarian cysts. It always sounds sad to list it out like that. I know these are legitimate struggles, but I am challenged by my desire to be open and my desire to not let my struggles define me.



FELA-I totally understand and I'm so happy you're willing to be open! Autumn's brother and sister have Factor V Leiden as well, actually.
How has the combination of these illness's affected your life?


GABRIELA- I've never thought of them as separate before, because they're all a constant part of my day to day life. They're one in my experience. A lot of my physical issues (both in the realm of mental and physical health) often are treated by doctors through regulating hormones with birth control. When I was a junior, I was prescribed birth control to regulate my acne and I ended up with a blood clot in my leg. That's how I found out I had Factor V Leiden. It is an interesting piece of the greater puzzle. But, I often forget about my Factor V Leiden because it's not something that infringes upon my everyday life.



FELA- That seems really tricky, do you have doctors working together to figure it out or see multiple doctors?



GABRIELA- Wow! No one has asked these questions before. I suppose the frustrating part is that I have been trying to manage and figure out my health for the past four years now with little lasting success. I don't really have a team working together. Over the years, I've gone to a functional medicine institute, multiple specialists, psychiatrists, and have an appointment with an endocrinologist coming up. They only recently started to wonder if the chronic fatigue I've been mentioning the last four years may be something other than a mental heath issue. It is exhausting to continue on when your issues have persisted over such a long time, as I'm sure you understand.



F- I really do. I also see women constantly who have chronic fatigue that is actually linked to something other than mental health.
As an artist, how do you channel these frustrations of being sick and undiagnosed?


G- The medium I've found most conducive to channeling these complex feelings is performance art. I have a performance piece where I cut my own hand on camera. It was not about self harm, although it may appear that way. It was about taking the internal struggle of anxiety and bringing it out with an external metaphor. I personally am very averse to hurting myself. The idea of cutting myself scares me; I want to run away from it. So for me, cutting my own hand was a way of showing me doing something I did not want to do, that I wanted to run away from. With anxiety, that feeling of running away is attached to many things.


F- Wow that is really powerful and I can relate to the anxiety which definitely gets worse with illness in our lives. Tell me more about
your invisible illness project! What got you passionate about doing it?

G- My 5 years at Notre Dame have had three major focuses. First, delving into how literature, philosophy, and theology utilize words to convey complex truths and then me trying to take these examples into my own creative writing. Second, I focused on video art and performance art, how video and performance can convey these truths as well. Third, I focused within graphic design, how word and image can come together to also convey meaning in new, surprising, and beautiful ways. 


I knew for my thesis I wanted to bring together all three of these disciplines in a way that could foster empathy and understanding for a group of people who really nee it. Thought at first about focusing on topical issues in our country. But then I thought about what makes my voice special among all the others out there and where I could best help. I then focused on loneliness and trying to build empathy for the experience of loneliness as pain. This led me to invisible illness. I believe that those who feel most isolated are those who feel they are not understood, who have a pain that is hidden and hard to understand. As someone who experiences invisible illness and who knows many who suffer it in silence, I thought this was a unique group who I could specially help with my time and art.

F- That's really amazing that you're combining all of those and I think it's an incredible subject to focus on. Invisible illness is so misunderstood which really needs to change. And understanding it first hand can be really powerful. How can other women help you with this project?



G- I want to help give a voice to women suffering with invisible illness, whether that be endometriosis or depression. My project is a platform for sharing and showing metaphors of what invisible pain looks like and feels like to people who understand and people who don't even know there's something here for them to understand. If I am able to collect more metaphors of pain, I will be able to showcase more metaphors either through my own performance art by reenacting them, through the installation in a museum, or even as eventual booklet of these complied metaphors to help spread empathy and understanding for invisible illness. I will be collecting personal metaphors for those who deal with invisible illness (like, "it feels like prodding needles covering my body") and will use my self as the vessel to physically bring them to life by enacting the for the camera. This experience will be shared in an installation that is accompanied by a booklet that explains the metaphors and the illnesses they represent. I'm also considering creating a web community where even after the exhibit is done, individuals can share their descriptions and learn about
each other's pain.



F- I just love your project so much! You are so brave to do this and this will open so many people's eyes to the reality of having an invisible illness. How have you grown from this?
Has it just been through art or are their other ways being sick has changed you?


G- Thank you so much! Your words mean a lot. I just want to help people in the best way I can. My experience with chronic pain/fatigue regardless of what its cause might be, has further instilled values my mother taught me were important since I was very little: to empathize and understand, to love and forgive. I try in all my relationships and encounters to have empathy be the guiding force. I know that so many people are fighting battles I cannot see, whether invisible illness or loneliness or feelings of inadequacy. I try not to judge others, knowing how little I know of what populates their internal lives. Beyond that, my struggles have inspired me to do all I can to be an advocate and a friend to those dealing with their own struggles, to show love and friendship to people who feel alone in their despair.




F- I'm so glad that so much positivity has come out of you being sick and that you have continued to create art and awareness in your everyday life. It is so beautiful. I also want to thank you dearly for doing this interview with me and sharing your project!



G- Thank you, Fela, for your time and your support. Your (and Autumn's) presence in the online community, and I'm sure in the world in general, brings joy and reassurance to those of us who feel alone in our pain. It is a wonderful thing you are doing. I am proud to say I know you.


F- You are amazing. We are so proud to know you and be able to continue to see your work. You have inspired us more than you know.



If you would like to help Gabriela with her project click here.