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Illustration: Mary Kirkpatrick
Sometimes there’s nothing better than escaping into someone else’s mind. Mexican painter Frida Kahlo is known for her graphic, confessional works, most of which depict her thoughts, dreams, nightmares, fears, and hopes in perspective. As an art historian, I can appreciate Kahlo’s declarations about the beauty and cruelty of her life, illness, and pain with her oil paintings on canvas. I’m particularly drawn to her next work. what water gave me. In it, we see her legs submerged in a bathtub filled with tiny floating images representing important moments in her life, after she was in a car accident as a young woman. This painting has become a metaphor for my current situation and a reminder that even in dire situations there can still be grace.
As you know, I am 39 years old and have end-stage liver disease (ESLD) and am in urgent need of a liver transplant. Thankfully, livers regenerate, so I can receive a liver lobe, or half a liver, from a living donor, and the liver will grow to its full size inside me and fully regenerate inside the donor. .
My health crisis began 10 years ago when I developed sepsis, requiring nearly two weeks in the hospital. I was diagnosed with primary sclerosing cholangitis (PSC). PSC is a rare autoimmune liver disease with no cure that slowly covers the liver with a layer of scar tissue, eventually turning to stone.
Despite my condition, I have lived a busy and enjoyable life for the past 10 years. There were days when I felt so well that I forgot I was sick. Immediately after receiving my diagnosis, I moved to England and completed a PhD in Art History at Cambridge University. There I made great friends, laughed constantly, and saw, studied, and taught beautiful art. I remember my excitement when I saw the Unicorn Tapestry at the Cluny Museum during a research trip to Paris. After the May Ball, I stretched out on the bowling green in my ball gown and watched the sunrise. Sugar Rush, who ate too many Jaffa Cake biscuits during Sunday tea in the graduate student’s drawing room. and the intensity of constant pub conversation post-Brexit.
But the PSC is a cunning beast that tricks you into thinking you’re out of the woods. They may be patient and wait for you to take your eyes off them for just a moment before they suddenly pounce.
In 2019, it swooped in. While waiting to defend my thesis, I decided to return to my hometown of Toronto. Shortly after arriving, I began developing severe symptoms that required a 17-day hospitalization. It was two months later that he finally felt well enough to return to Cambridge.
Almost a year later, after defending my thesis, I returned to Toronto, this time to ride out the pandemic. Once again, I had horrible symptoms of what appeared to be spontaneous internal bleeding, requiring multiple hospitalizations and medical attention. It is becoming clear that this beast of disease is running at full speed. But somehow I became stable again and well enough to receive a postdoctoral fellowship in Florence. I spent almost a year there doing everything I did at Cambridge, except Italian, and it was brilliant.
Then, in October 2022, the disease decided it was tired of being behind the scenes and began making its way to the center stage. During his routine MRI exam, the doctor found something like a potentially cancerous tumor/lesion on my liver. I immediately flew back to Toronto for an emergency biopsy. He was then referred to the liver transplant team for immediate evaluation.
Last June, I was placed on Ontario’s transplant list. I’m currently waiting. Looking for living liver donor Blood type given in Toronto is O+ or O-.
Despite the frightening nature of my disease, the urgent need for a transplant, and the uncertainty of my schedule, liver disease has also given me a great gift. I have returned to a city that has always been so generous and kind to me. I am supported by colleagues in the Department of Art History at the University of Toronto, where I work as a researcher and lecturer. I was able to reunite with some great friends.
Liver disease has given me the time and space to slowly take inventory of myself. To reevaluate your views, ethics, ambitions, and motivations. I was also shown a path to service, as I am currently passionately promoting organ donation awareness activities, including liver disease education and living organ donation awareness. I found kindred spirits in the transplant community. They welcome me with open arms and are one of my biggest cheerleaders.
If this is what end stage liver disease has given me, I am grateful. I am enriched by what I receive. This is what “water” has given me. This is what keeps me alive as I am actively searching for a liver donor match and transplant.
Stephanie Azzarello lives in Toronto.
