I have never been on the receiving end of as many gushing compliments on my appearance as I was after being diagnosed with a terminal disease.
Shortly after being diagnosed with PSC, just before my fortieth birthday, my skin became perma-tanned with jaundice. I was, for the first time in my life, able to eat everything I wanted without putting on an ounce. A friend who also suffered from PSC termed this phase as “The Time of the Great Gluttony”.
When my liver got particularly bad I actually - for the first time in my entire life - struggled with losing too much weight too fast. It was terrifying.
There were other physical manifestations of my failing body. My eyes seemed to be sink into my skull. My skin was scaly and fragile. My facial bones became more pronounced as my face thinned out. My rings fell off my fingers and my bracelets slid off my ever-shrinking wrists.
Yet the compliments keep coming. One day I bumped into a person I hadn't seen in a while. She did know, however, about my liver disease.
"You went on vacation!" She punched me on the shoulder. "I wish I had a tan like that!"
"We actually stayed here for the holidays," I said. "It isn't a tan. It's cirrhosis."
"Oh. Well...you look great! You've lost weight too!"
"Same. That's from the sick liver."
"That’s amazing. I mean, it almost makes me want to get a liver disease."
You can fucking have mine I felt like saying, but didn’t.
On that particular day it was actually taking every functioning brain cell in my head to will myself to stay vertical instead of keeling over, so I couldn’t even think up a coherent response.
This was not a mean person. This was not a bad person. However, her reaction does illustrate how completely (pardon my french) fucked up our society's attitudes are towards beauty - particularly female beauty.
Given the daily compliments I received on my weight loss, thinned out face, and tanned skin, I have to conclude that either:
a) people were flummoxed when they saw me and didn't know what to say, so got chronic foot-in-mouth disease (I have complete sympathy with this), or
b) what we consider beautiful for women in North America is actually what we can attain by getting terminally ill. This, needless to say, is worrisome in the extreme.
Losing weight with PSC was not wonderful, it was very, very scary. In PSC patients rapid weight loss is usually either a sign of a decompensating liver (look it up - not a happy state of affairs) or, more ominous still, one of the only outward signs of bile duct cancer.
Same with the tan. People with liver disease pay close attention to skin color. Whereas pre-liver disease I may have lusted after a golden glow, I now look at ghostly pale people and think enviously to myself "their liver function must be so good."
I now realize how I took my pale Scottish / British complexion for granted when I was healthy, as well as my round face and tendency to pack on weight.
I come from peasant stock. I am built like my ancestors in the Scottish highlands - sturdy legs, round, muscular arms, and a low center of gravity...perfect for scrambling over hedgerows with a sick cow slung over my shoulders.
I was never so appreciative of my solid build as when I got sick. My strong constitution meant that my liver could be as sick as it was and that I was still more or less functioning.
I had bad days and bad weeks, but there was some deep, indefatigable well of energy in my cells that allowed me to rebound even when I became very ill.
It was not an electric kind of energy one finds in frailer folk, but a kind of dogged endurance that comes along with legs like tree trunks and thick upper arms. I was the one, a day after each of my C-sections, making slow, plodding laps of the maternity ward with my IV pole.
Sheer pigheadedness, backed up by thick thighs.
Since my transplant, I have been so grateful to watch my body revert back to its natural physical appearance, even though it doesn’t match up with what is normally considered "beautiful" by most people.
I’m pale in the winter and I’m starting to develop the double chin from my mother’s side of the family. My cheekbones have lost their sharp edge. My body packs on weight and is determined to hang on to every last calorie in case the Englishmen invade my village (sigh, AGAIN).
My abdomen is criss-crossed by C-section scars, a massive Mercedes scar from my transplant, and little scars here and there from the tubes and needles they had in me.
I am finally well. I have never felt more beautiful.