My Belly Buried Under a Lot of Tape

This is a photo I took of my belly 10 days post-surgery. The swelling has gone down considerably since then, but the bandages and tubing are quite similar.

At the upper edge of the photo is the PD belt, an elastic band that goes about my waist into which I can insert the transfer set (the end of the tube that gets hooked up to the dialysis machine). This keeps the transfer set from dangling and thereby prevents it from getting snagged, pulled, or dirtied.

The warning sign on the post-surgery dressing has been removed. The message shown on this photo says that only a PD nurse can touch the dressing, with numbers at which the on-call nurse can be reached.

But otherwise, this is it, folks.

Perhaps this is how someone who grew a third arm or leg while sleeping might feel. She wakes up in the morning, and there it is--another appendage! It's still all so strange and even a bit creepy.

I have to touch my belly to wash it with antibacterial soap, dab it with peroxide, and douse it with special cream every day, but otherwise, I don't touch it. I used to lie in bed at night and rub my belly. I was so pleased with its shape, its tautness, its size that was smaller than most women's my age, for sure. I really liked my belly.

Recently I noticed the tubing under the skin. Not just at the exit site, but several places, as if a foot or more of tubing is coursing its way just under the surface.

This marks a completely new stage of my life. Before, I slept alone every night, but I sure looked like someone who should be sleeping with someone. Nobody was with me, but damn if I didn't look like a woman who should be having great sex every night! Every once in a while, I would stand before a floor-length mirror in just my skivvies and smile, thinking of what I would love to have a lover doing with me.

But now when I do look in the mirror, I look from the breasts up.

It's just really difficult to accept that from now on until the day I die, there is so little hope of a relationship. If no one of interest to me was interested before, why in the hell would someone be interested now!

And it's not just the PD paraphernalia either. It's the insulin pump, shown here in the black case I can slip it into and then clip to my belt or the top of my skirt. Otherwise, I stuff it into a baby sock and nestle it in my underwear.



At least with the insulin pump, I could remove it if I didn't want a "date" to see it. The site is changed every three days anyway, so I could just remove the infusion site, the tubing, and the pump for the duration of the "date." My blood sugar would be a little high afterward, as I wouldn't be receiving the 20-times-an-hour mini-infusions of insulin, but I could correct for that by giving myself a bolus post-date.

But there's no removing the catheter. It's lodged into my mid-section and would require an extreme yank to free it. Just thinking of this gives me a shiver.

So all of this is why I wonder, Even if someone were interested in approaching me, however could he manage that?

Dialysis is Easy, Like Prison and War

I spoke with someone yesterday who closed the conversation with "I'm glad dialysis is easy." This is a classic case of confusing a good attitude with a good situation.

Just because I'm not crying on anyone's shoulder or voicing any complaints doesn't mean this is easy. Two men who were very interested in me before they knew I had started dialysis are now not returning my calls. Many friends have written me off, figuring, I suppose, that I'm on my way out, so why bother. My opportunities for social engagement have been severely curtailed due to the time constraints of dialysis and doctor visits. And I wonder if anyone will ever want to touch me again, and even if someone does, how is he to do it without interfering with my tubing or contaminating my exit site?

So, yes, dialysis is easy in the same way that prison and war must be easy: You have to learn to cope because not coping just adds another layer of woe to the situation. Accept or die. Those are the options.

Decoration in the Lives of Others

What I am to write here is not a new idea. Truly, I have wondered about this for many years. It's just that I feel it quite acutely right now.

We are all mere decorations in the lives of others. There, I've said it. I'm sure that many will protest, claiming that they care deeply about many people. But they're not being honest with themselves or with others.

I write this, not as a cynic, but as an observer of human behavior. It is no less cynical than if I were to write "We all will die." This is a statement of fact, and saying otherwise is tantamount to denial.

What I mean by "decoration" is that we decorate the lives of the people who know us. We make their lives more colorful by association with us. They may appreciate us for our tennis skills or our adventuresome spirit or our talent for flying kites--or our damn good attitude when faced with kidney dialysis. We are a decoration that adds to the color of the other person's life. He or she can then tell others, "Oh, yes, my friend Kelly is a fantastic tennis player" or "My neighbor Lester just returned from a three-month trek through the Amazon" or "I know the national kite-flying champion" or "My friend Heidi is on dialysis."

There's nothing fundamentally wrong with this. It's actually quite lovely that we appear on stage and give our performances and that others are amused. Kind of like Burning Man, yes?

Most people fall into this category of decoration. We realize on some level that they have their lives and their significant others and that we are somewhere on the periphery. We are not central to their existence. I mean, how could we be? However could we be central to the lives of all those who know us!

We are not the Christmas tree, but one of the decorations. If one of the glass bulbs breaks or is lost or stolen, the tree remains. The bulb is replaced--or not. Some trees have more decorations, others fewer. But the decorations are not the tree.

In contrast to the decoration people are the few, rare tree people. If we're lucky, we have perhaps one person who cares about us in a daily, ongoing, substantial way. If one is exceedingly lucky, that person is a life partner, a lover, and a best friend wrapped into one. Someone whose life is entwined with yours. Someone who loves you in a selfless, lay-down-his-life-for-you kind of way.

Sometimes, I'm sure, this person is a friend, but this kind of friend is exceedingly rare in our society. This would be someone you've seen every day of your life, who lives in the same village, went to the same school, married your cousin. Someone who was there with you when you went off to war, who served by your side. Or someone who helped deliver your babies, and you in turn helped deliver hers. Someone who was there when your grandparents died, and held you as you wept when your mother, father, sister, or brother died. A friend of gold, as Aristotle said, not a friend who has a shared interest and when the interest is no longer there, the friendship ends. No, this is the type of friendship, the philosopher wrote, that consists of two bodies but one soul.

I've long known that the person who cares about me in a fundamental way is my son, and I, of course, care for him. But I've also known that he has his life to lead, and most likely he will be off to graduate school in the fall, in New York or Boston or San Francisco or some other city.

And that's why I've always wanted a dog. Unfortunately, I've always lived in an apartment in which dogs are not allowed. A dog loves in an always-there-for-you way. You are never a decoration for a dog.

But now that path seems closed off to me, as a dog increases the risk of infection, and a dog may jump up and tug at my tubing. Yikes!

Every time I see a dog now, my heart aches a bit. How I would love to have its affections! I could really use some unconditional love right now from a four-legged creature who couldn't care less about tubing and a catheter. Who would see those as decorations and not as the tree.