"The Journey We Take Alone?" Part 2

By Alexander "Sandy" Prisant

A baby. A son. The first-born. To carry on the family and its name. Alexander Prisant.

But there was not a second of joy. Within hours after I was born, doctors informed my parents that their first baby was going to die.

All they offered my father was the opportunity to open up my tiny body for research—in the name of science—to try to understand what had happened to my kidneys.

My father agreed, and in so doing, saved my life. It was only the first time.

That was how it began. And it hasn’t changed much since. Always testing. Always on alert. Often, so very often, defying the odds.

Welcome to chronic illness. More than 100 million people in the U.S. have a chronic illness, some 21 percent of the population. Many die.

In my case, I had to learn to live with an illness that can at any time be fatal. Illness has made me into the person I am. It is with me when I wake up and instinctively first look at my toes to see if edema (fluid build-up) is forming in my feet because of decreased kidney function. It is with me when I mentally sort through the scores of seemingly harmless foods that might hurt only me---from guava juice to baked beans. It is with me when I think about health reform and America’s strange blindness to the need for universal health care -- why can’t we manage to provide health care when all other advanced nations already have it?

My illness has no doubt made me a much more compassionate thinker when it comes to political issues – much more compassionate than many of my more conservative friends and colleagues who have no constant, immediate connection with their own mortality. Someone once told me: “Dogs don’t worry about much—they think they’re going to live forever.” A painful connection to one’s mortality often colors ones political views. When you’re feeling invincible, it’s tough to care much about the less invincible.

******

It all started in New York. Me, as a baby. I had an obstruction in my kidneys. Urine is of course toxic and it was backing up and destroying my kidneys. There was a congenital obstruction in the ureters—the tubes that bring urine from the kidney to the bladder.

At the time there was little to do but have tubes from the ureters sticking out of my body to drain off urine, to temporarily stop it backing up. Doing this meant a few pretty profound things. For one it meant that I couldn’t move. Literally. It meant tying me down, as an infant, to a hospital bed.

It also meant me having a trained nurse 24/7. In those days such a nurse cost $300/week. At the time my father was one of the most successful young architects in America. Still, he was earning only $200 a week.

I was stabilized, but something would have to change.

It did. My father’s whole career. In 1945 he had made a name by being one of the winners in a national competition held by the Chicago Tribune to find residential designs for the coming baby boom as the troops returned from World War II. He was credited with developing an early version of the split-level home. It helped catapult his career. When my illness forced him to earn more, he left a safe, successful design group and moved from architect to lone developer.

On the North Shore of Long Island he laid some of the cornerstones of suburban life, building middle-class homes that drew on his prize Tribune design and planning the first suburban Macy’s in Manhasset, New York.

*****

You can’t live long with open tubes sticking out of the sides of your body, out in the open, constantly vulnerable. Even immobilized you’re always subject to deadly infection.

Which is why my life had to be saved a second time, at Mt Sinai Hospital, when a surgeon showed up there with an idea—a way to artificially get the body to move the urine toward the bladder. It meant suturing some artificial tubing to the ureters, bypassing the obstructions and detouring around them.

It had never been done before. And the hospital didn’t think much of the idea.

They proposed a more conventional procedure—creating artificial sacks as bladders outside the body. These sacks had about a 50% chance of being successfully installed, but would likely only last until I was teenager.

My parents had a decision to make, and they were up against it — should we try an unproven, rogue surgical procedure which might offer some semblance of normal life but at colossal odds? Or should they keep me – still a baby -- alive with these artificial sacks, only to lose me as a teenager?

OR, should we do nothing and just keep praying?

What would you have decided for your son? With no medical training, what would you do? First my father asked absolutely everyone.

Then he made a decision that changed my life.

Writer Alexander "Sandy" Prisant, formerly a Vice President of a large Silicon Valley company, keeps a blog called Wordsmith Wars. Stay tuned, as Sandy is committed to writing a diary that he is calling "his last writing project.