Visuals of an Invisible Illness
Reviewed by Michael Smith on October 13, 2020
Video Transcript
SAL MARX: When I was 13 years
old, I mean, I expected
that when people get sick,
they get better.
When I first started having all
the soreness, I really did not
know that this was going to be
the rest of my life.
I grew up playing three sports, basketball, soccer, and lacrosse. So I was used to a lot of different types of pain, being uncomfortable, being sore. This was something in the back of my head that I think I kind of knew was not a normal sports soreness. I couldn't turn my neck side to side very well, and my mobility was very decreased.
So for 3 and 1/2 years I saw over 35 different specialists. No one really knew what it was because there was nothing wrong with me. It was very much like she has all this pain, but nothing is coming up in testing, so there must not really be anything conclusive. I was not hopeful that we were going to really find out what was going on.
On 11/11/11 around 11:00 AM I was diagnosed with ankylosing spondylitis. AS is a chronic inflammatory disease where there is inflammation centered around your spine. What that means is in between the vertebrae in the spine, a person with AS, their body creates new bone. Instead of a spine that has bone vertebrae, bone vertebrae, you just have straight bone. Sometimes I feel as if I am in a race against myself just trying to get as much done before my body will tell me that it hurts too much to keep going.
Because I have the privilege of not showing what my disease is, it's very lonely and hard to communicate to people that don't really understand what it actually is. For a long time I made art for myself and only myself, and it wasn't until college and when I really felt the invisibility of my disease and the need for it to be communicated that I really started to exclusively focus on my disease, my body, and how I could communicate that through my art.
The first big project I did was my senior year of college at Pomona College. I did an installation in our student gallery that featured a grid of my brain and body scans. That experience really set me on this trajectory of feeling like I want my art to be in a conversation where people can start to understand what invisible diseases are and why it's so important that people talk about them. I would say that every single one of my paintings defines a moment in my life with the disease.
The first person that sort of handed me a paintbrush and gave me the tools to communicate with art was my Grandma Phyllis. She had breast cancer off and on for about 25 years. She was always filling her time with her creative passions, which were gardening, cooking, and painting. Seeing her sort of live her life bravely with a disease was my first example of how I could use my art as my outlet and use my art to communicate what was going on.
Creating clothing with embroidery is just another way of making my disease and my story visible. Without it, I don't feel as much myself when I walk into spaces because there's nothing visible about what I've gone through.
Over the course of these past eight years that I've been diagnosed, I've kind of gone in and out of how much I want my disease to be my identity. And the older I get, the more I feel like keeping it invisible is only doing a disservice to myself and my story and makes it much harder to live with.
I grew up playing three sports, basketball, soccer, and lacrosse. So I was used to a lot of different types of pain, being uncomfortable, being sore. This was something in the back of my head that I think I kind of knew was not a normal sports soreness. I couldn't turn my neck side to side very well, and my mobility was very decreased.
So for 3 and 1/2 years I saw over 35 different specialists. No one really knew what it was because there was nothing wrong with me. It was very much like she has all this pain, but nothing is coming up in testing, so there must not really be anything conclusive. I was not hopeful that we were going to really find out what was going on.
On 11/11/11 around 11:00 AM I was diagnosed with ankylosing spondylitis. AS is a chronic inflammatory disease where there is inflammation centered around your spine. What that means is in between the vertebrae in the spine, a person with AS, their body creates new bone. Instead of a spine that has bone vertebrae, bone vertebrae, you just have straight bone. Sometimes I feel as if I am in a race against myself just trying to get as much done before my body will tell me that it hurts too much to keep going.
Because I have the privilege of not showing what my disease is, it's very lonely and hard to communicate to people that don't really understand what it actually is. For a long time I made art for myself and only myself, and it wasn't until college and when I really felt the invisibility of my disease and the need for it to be communicated that I really started to exclusively focus on my disease, my body, and how I could communicate that through my art.
The first big project I did was my senior year of college at Pomona College. I did an installation in our student gallery that featured a grid of my brain and body scans. That experience really set me on this trajectory of feeling like I want my art to be in a conversation where people can start to understand what invisible diseases are and why it's so important that people talk about them. I would say that every single one of my paintings defines a moment in my life with the disease.
The first person that sort of handed me a paintbrush and gave me the tools to communicate with art was my Grandma Phyllis. She had breast cancer off and on for about 25 years. She was always filling her time with her creative passions, which were gardening, cooking, and painting. Seeing her sort of live her life bravely with a disease was my first example of how I could use my art as my outlet and use my art to communicate what was going on.
Creating clothing with embroidery is just another way of making my disease and my story visible. Without it, I don't feel as much myself when I walk into spaces because there's nothing visible about what I've gone through.
Over the course of these past eight years that I've been diagnosed, I've kind of gone in and out of how much I want my disease to be my identity. And the older I get, the more I feel like keeping it invisible is only doing a disservice to myself and my story and makes it much harder to live with.
