The Image vs. the Reality

A few months ago, Aaron and I attended a conference for dialysis patients. Approximately 400 people were in attendance. At one point in the keynote speaker's address, she asked for a show of hands to her question, "How many of you have people in your life who assumed you were incapable of doing things that you were actually quite capable of doing?" Most everyone raised his or her hand. Not me. I actually deal with the opposite situation: friends who must believe my life has changed very little since the onset of dialysis, who believe that I can still do everything I always used to do and more.

On one hand, this says a great deal about how I present myself to the world. I don't focus on limitations and make a point of doing as much as I possibly can for myself. People see me as vibrant, strong, and full of life, and I am grateful for their positive vision of me.

On the other hand, it seems odd that my friends have such a dim idea of what this huge part of my life entails. It would be as if a friend didn't know I was single, or if she didn't know I had a child or that I worked as a writer. It's similar to how many people have said to me over the years that diabetes is "just avoiding candy." Wow, if only that were true! That would be easy. It's how it attacks every organ and every tissue of the body that's the difficult part.

Last summer my friend Araia, who lives in rural northeastern Washington state, said I should visit her. We could float on inner tubes down the river that serves as one of her property lines, she said, not realizing that, though this sounds idyllic, it's no longer possible. Any water activity besides a shower is verboten, since any contact with water carries with it the high possibility of infection through the exit site for the tubing that emerges from my abdomen.

Last week my friend Helene in Nova Scotia asked me if I'd like to go to New Zealand with her. Helene is an Air Canada retiree and has lifetime discount tickets. Plus, she has a friend on the North Island with whom we could stay. I have always wanted to go to New Zealand and was thrilled with this plan. I emailed my globe-trotting, always-up-for-an-adventure friend Heather, who took a year to explore the South Pacific. Though Heather's travels were 12 years ago, I still wanted her tips on kiwi journeys. She enthusiastically wrote back that by all means I should hitchhike as it is totally safe and completely acceptable. Like Araia's plan of floating down a river, this, too, sounds quite romantic and adventuresome, but is completely impossible. The dialysis machine weighs about 35 pounds, and the supplies I need for nightly dialysis weigh another 30 pounds--that's 30 pounds every day! Hitchhiking would only be possible if a U-Haul were following me.

So, though I appreciate Araia's and Heather's image of me as someone who can do anything, I began making a mental list of all the things that are no longer possible with dialysis. They fall into three categories: hygienic, logistical, and aesthetic.

Hygienic--Anything that involves water is out. (I am, thank goodness, allowed to shower, but this does not involve submersion.) Canoing, kayaking, water skiing, surfing, swimming, jacuzzi-ing, inner tubing, bathing. Anything that involves dirty conditions, as the environment in which I hook up to the dialysis machine and cap off in the morning must be as free of germs and dirt as possible. This would mean having a closed-off room in which to conduct dialysis, a room without open windows, ceiling fans, A/C, blowing heaters, animals. No putting down a sleeping bag on someone's living room floor.

Logistical--Travel is limited to personal automobile (in which to lug around all my dialysis solution and other equipment) or staying at one location (such as a resort, hotel, or friend's house). Travel by any other means is not feasible--train, bicycle, foot, boat, horse or other pack animal. No late-night events or all-night events. (Last night, for example, I was a party-pooper, saying no to a 7 p.m. movie, as I had to be home by 9:30 to hook up.) No spontaneous trips, esp. any that involve flying, as arrangements for the shipment of supplies must be made six weeks in advance for domestic travel and three months in advance for overseas travel.

Aesthetic--No midriffs, tight-fitting clothes, or bathing suits, as they would show the outlines of my tubing and exit site. No dirty dancing, as the man would rub against my tubing and dislodge the transfer set from its retaining belt. No crazy sex, as the 12 inches of tubing, 3-1/2-inch plastic transfer set, and exit site bandaging really get in the way--to say nothing for the bulk and the 18 inches of tubing of my insulin pump. No romantic bedroom, as it is piled high with boxes of dialysis solution and encumbered by a therapy table.

So, though I will continue to be strong and positive, doing as much as I possibly can, it would be nice, too, if friends understood that dialysis is not a walk in the park, that it is a major alteration to the fabric of my life, that I want to be free of it as soon as possible, that if I don't get free of it soon I will die, that I absolutely do not want to spend the rest of my days hooked up to a machine every night.