I am a bit late with this post because Julie and I went to Hobart in Tasmania to visit the Museum of Old and New Art – MONA this weekend (a joint birthday present from our kids). We left straight after Saturday dialysis and came back Sunday night. It was a real treat. We stayed in the city at the Old Woolstore Hotel, which was very nice – each room is an apartment, with cooking and cleaning facilities (none of which we used, because we were on a break!).
It was a ten minute walk along the waterfront (dawdling, looking at fishing boats and tall ships and buying a fried fish snack from one of the houseboats tied up to a jetty – it was as good as it smelt) to get to the ferry that takes you to MONA, 30 minutes up the river.
MONA is a private museum built by David Walsh, a professional gambler who won big time. The artworks he has collected make it probably the most quirky museum anywhere: three floors of amazing and confronting art from around the world, including a striking variety of people, both real and imagined. Some were attractive, some sexy, some very ugly and some dismembered into pieces hanging from trees. Thinking about it, sex and death get a good run among the multitude of historical and whimsical installations.
But for me, it underlined the multiplicity of shapes, sizes, types and visual personalities that make us who we are: short people and six footers, thin and fat, bushy and shorn, pierced and tattooed, underdressed and overdressed, young, and old, healthy and sick, eccentric and ordinary. That’s why people-watching is such a delightful (and cost-efficient) pastime. Sitting at a coffee bar, looking out the window is one of life’s quiet pleasures. Without fail there is always someone walking by who seems to be a caricature of a real person; someone who has stepped straight from a Tintin comic, or Oliver Twist. Everyone has a story.
Sometimes we need only check out the mirror. Especially us BigD-ers. Apart from the original features we have come to know and love (or ignore), there are the new ones provided by medical science.
The most obvious, especially after a few years, is our fistula. Mine has been with me since 1994. I well remember the day it was made. Or more exactly the day I came home with my arm bandaged. I sat in our sofa and laid my arm outstretched along the back of the seat. Then I heard the thrill for the first time: the echoing boom-boom-boom of my heartbeat, sounding like someone’s earphones turned up too loud. I was flooded with emotion. I realised that it was really there and my arm and I would never be the same. My body was no longer the one I had been born with. Tears came to my eyes and I stared at the floor for a few minutes.
I won’t say I got over it quickly, but it has eventually become a new way of making me unique. It has grown into quite a snake on my arm. It looks pretty ugly, and to anyone who doesn’t know what it is, very weird. But not to my 3-year old grandson, who regularly pushes back my sleeve and gently rests his hand on it. He feels the beat, gives me an “All OK” look and moves on. Situation normal.
But I am still a little wary of flashing it in public. Short sleeved shirts? I own exactly none. I have a fair collection of long-sleeved T-shirts and shirts I wear in summer.
When I began at the gym I wore long-sleeved tops when everyone else was in singlet or T-shirt. I don’t think people took much notice, but I felt the odd man out. So one day I just wore a T-shirt. I don’t know for sure, but I think most people don’t notice. And if they do, they don’t show it (you know how cool people are at the gym: it’s an “all about me” place). So the gym is the one place that my fistula gets an outing.
Of course, there are other dialysis modifications. Peritoneal dialysis (PD) is done via a permanent tube extending from your solar plexus. Not something most people want to show in public. My nephrologist showed me pictures when we discussed the choice of options, years ago. I know it is more convenient, but I wasn’t keen. I am sure body image was a part of the decision.
If you are a PD user, how do you feel about it?
There are lots of other body changes that we kidney people face over time. Some I have are: the Michelin Man look and rice paper-thin skin from the transplant drugs (now gone with the kidney); the pencil-thin necklace scar across my throat from the parathyroid gland removal; two chunky transplant scars (left and right) across my lower abdomen; the scar on my left side at the back, and missing rib where my diseased kidney was removed.
We all have a mental image of our body, and we usually don’t like to mess with it too much. But few of us have the same ones we were born with. They reflect our history, good and bad. My body is me and I am my body. Live with it.
Perhaps that the point MONA is making.