Pieces by Polly
By Pauline Stewart
I thought I was getting a migraine. Now, I’m a visually impaired artist!
Hi, I’m Polly from Pieces by Polly for MOGAD. Back in 2019, I thought I was getting a migraine. As a long-time migraine sufferer, I felt the familiar niggle behind my left eye. So I took my migraine preventative medicine and continued on with life whilst trying to ignore it. I went to work and then went out and celebrated my friend’s birthday with cocktails, dancing, and karaoke! When I woke up the next morning, my eye was still hurting, but I didn’t complain because I didn’t want anyone to assume I had a hangover.
As the day wore on, the pain began increasing. The following morning, Sunday, September 1, the weight of my eyelid on my closed eye was painful enough to awaken me before dawn. It was Father’s Day in Australia, and I had a phobia of hospitals, so I made a deal with myself that if I could make it through my first coffee, I didn’t have to go to the hospital. I made it halfway through my coffee before I went and woke my husband with the words, “Happy Father’s Day, can you please take me to the hospital?” It was a good thing I did because not long after I had arrived, the triage nurse told me to prepare for a long wait. After all, it was JUST a migraine and definitely not an emergency (there were no doctor’s offices open on Sunday in my hometown—hence the visit to the emergency department).
I lost the sight in my left eye. It was like a grey curtain had come down over that eye. One minute, I could see; the next, there was nothing. I sat there, winking, trying to will the sight back, trying to convince myself it wasn’t happening. Things like this don’t actually happen in real life, only in the movies. Luckily there wasn’t anyone sitting opposite me with all the winking I was doing, they might have thought I was trying to come on to them! I finally confessed to my husband who suggested I tell the nursing staff. I was immediately whisked out the back, into a cubicle and they began a barrage of tests. Through it all, I remained calm. The final test was a vision test. The doctor asked me to cover my good eye and read the vision board. I covered my good eye and informed the doctor I was unable to see him, let alone the board or any of the letters on it. I uncovered my good eye and discovered the doctor didn’t have a very good poker face. He looked scared. It was the first time I’d seen a doctor looking scared and I realised I was in trouble. It wasn’t just a migraine.
The doctor told me I needed to get to the eye and ear hospital in the city, three hours away, as fast as possible. He could organise an ambulance, but that would take hours…so my husband drove me. I arrived at my local hospital at 7 am, and by 1 pm that afternoon, I had been admitted to the Royal Victorian Eye and Ear Hospital with a tentative diagnosis of optic neuritis and was hooked up to my first steroid IV. At the time, the doctors and I all thought it was a complication of my previous diagnosis of systematic lupus erythematosus. The doctors warned me they were testing for a whole bunch of scary things and not to bother googling them because they were rare and scary, and the chances of me having any of them were slim. Famous last words!
On December 11, 2019, at a follow-up appointment, I was given an official diagnosis. I tested positive for MOG antibody disease (MOGAD).
My MOGAD is proving difficult to control. I’m ridiculously steroid-sensitive, and by March 2020, I was permanently and completely blind in my left eye. Along with losing sight in that eye, I also lost depth perception (which is incredibly important as I now need a cane to navigate independently). I gained something else I definitely didn’t want or need—the feeling of a constant migraine. My left optic nerve is going to remain like this forever.
Between the constant, excruciating pain and the high doses of steroids, sleep was pretty hard to come by. I spent many nights doom scrolling through Facebook and stumbled across some paint pouring videos. I found them incredibly calming and relaxing until one night, I asked myself, “Why am I only watching?” The next time I had a support worker available to chauffeur me, I told her we were going to buy art supplies. Oh boy, do you get some strange looks when buying stuff like that while using a cane.
But I had found my new purpose! I had been unable to work since March 2020 and feeling very lost. My cousin had married an accomplished artist, and we were enjoying lunch out with them one day when they asked what I had been doing with myself. “Not much,” was my response. My husband was having none of that and I was mortified when he told a ‘real artist’ what I’d been up to. She asked if I had any photos of my pieces, and I said no, definitely not, forgetting I’d sent photos to my husband. He whips out his phone to start showing her, and I just wanted to crawl under the table and hide. Then I heard her say, “Oh wow, these are really good, you should sell them!” And so Pieces by Polly for MOGAD was born.
I now sell my art via Facebook and Instagram. As well as paintings, I also make functional art, such as clocks and vases. Most things I can send anywhere, but the vases are too fragile and are only for locals at the moment. I also donate 10% of all sales to MS Australia. Although I don’t have multiple sclerosis, they have been an amazing support for me and we all deserve a cure.
MOGAD has definitely made painting interesting. Because of my depth perception issues, I’m never quite sure where the paint is going to end up. I also suffer terribly from muscle spasms in my arms and hands, so I frequently drop things or unintentionally throw things. This can get VERY messy when you’re dealing with very fluid paints! As painful and debilitating as my MOGAD is, I’m grateful for it because I never would have discovered the joys of painting without it.
My dreams are to be pain and steroid-free, to one day hold my own art exhibition, and to have my own art studio so I can be as messy as I want. You can view my art on my Facebook page, Pieces by Polly for MOGAD, or Instagram @piecesbypollyformogad.
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.
