Sunday, June 12, 2011

The Journey We Take Alone: Part Eight

By Alexander "Sandy" Prisant

By age 20 I had already been married two years. I was at the university and working in journalism. All full-time. Why was I cramming in so much, so fast? From the beginning had my subconscious been telling me “you don’t know how much time you have?”

For decades, the importance of the kidney was wildly underrated. The National Kidney Foundation used to have a campaign theme: “It’s Not Just Another Disease. It’s the Fourth Major Cause of Death in the United States.” Over the years, medicine had found that the organ handled scores of functions, many of them life critical: from tirelessly filtering poisons out of our blood to promoting red blood cell generation. The kidney even impacts our physical growth. Having only 40% kidney function from birth produced a body, in my case, that was not quite right—sturdy legs supporting a frail torso. That left me chronically short of natural muscle, causing the usual problems for any schoolboy. Nonetheless, Dr. Swick would have been shocked to see me playing varsity soccer and baseball.

My adolescence had been fairly uneventful. For a while, the family and I almost believed I was becoming normal. Then at 16, I got my first kidney infection. There was some fever and a little discomfort. It was easily treated by a nephrologist who concluded his examination with an almost offhand remark: “you’ll probably need an operation when you’re about 50.” Somehow this man was seeing 33 years into the future. He was talking about an operation that did not yet exist—a kidney transplant. And he turned out to be right.

But that one incident was quickly forgotten as I moved through my teens. With work, university and a loving wife, sleep for me was as optional as for any 20-year-old. The crushing fatigue of advanced kidney disease can take decades to develop. But the consequences of chronic renal failure were already appearing. Before I could vote, I’d already developed high blood pressure—a quarter century sooner than most people did, but a common situation for kidney kids.

At first I was on three or four pills a day. That grew to more than a dozen; it’s been an evolving pharmaceutical cornucopia everyday since, as new symptoms appeared and new frontline drugs came along to counter them. “Everyday since” now comes to almost 17,000 days and counting.

Poor kidney function means all your organs are trying to survive and work with poor body chemistry. Every day. The effects can range from coronary artery disease to diabetes to stroke.

One afternoon when I was nearing 30, my mother was passing by a bathroom at the family home that was a magnet for all four of us--as boys, then men. I had carelessly left my pill bag open on the bathroom counter. She looked at the bottles and blister packs and slumped onto the toilet seat. My mother was a loving person, but she didn’t wear her heart on her sleeve. I can only remember her crying twice; once when she phoned me, in shock, to bemoan the slaughter of Martin Luther King. The second time was when she sat in that powder room, looking at the mountain of meds keeping me going.

Now I’m up to 18 pills a day, but it’s like anything you do every day; it becomes as routine as pulling on your socks. I’ve learned that these things often seem more horrific to observers than patients. As I’m tossing a dozen pills down with a single gulp of water, I’m thinking about sports, business or dinner. Mostly, it’s loved ones, not patients, who are left in tears.

Because there has never been any other life but this one, uncertainty and mortality have always been too close to be feared. But with few overt symptoms and no pain for decades (making kidney disease more insidious), I’ve still had all the normal ambitions; to ponder what I could achieve and what adventures might lie before me. I’ve been fortunate to work for governments and the Vatican and to tackle challenging projects on four continents.

And possibly more easily than some, the medical reality deep inside has helped me to do what all of us are always urged to do—to live in the present. To feel the moment. Every day.

Writer Sandy Prisant is a survivor. His story, "The Journey We Take Alone," which began on MyStoryLives in March, tells the tale of a person who has lived with a serious kidney disease all his life. Part Seven appeared on May 31, 2011, and there are links in that post to all previous installments. At this moment, Sandy is waiting for a heart and kidney transplant, and he is in good spirits!


Two Cookbook Cook said...

Hang in there Sandy, your fans are rooting for you!

Dr. Mel Waldman said...

Dear Sandy Prisant:

In Plato’s Allegory of the Cave, human beings were chained to the wall of a cave. They lived inside the cave in darkness for the duration of their lives. But while these primitive humans faced a blank wall, a mammoth fire blazed behind them. And these human prisoners saw shadows on the wall created by people moving in front of the fire. They believed these shadows were reality just as they thought the echoes they heard were real sounds rather than reflections of reality-the noise of people walking past the monstrous fire.
What would happen to these prisoners if they were suddenly freed from their life sentence of darkness? What would happen if they were released into the real world outside the cave? Could they tolerate the glorious light of the sun? Or would they choose to return to the darkness of the cave where shadows were perceived as reality?
Sandy, the prisoners in Plato’s cave could not perceive the glorious rays of the sun, for they only knew the darkness and the shadows. Chained to a wall, they could never have even a glimmer of the wondrous world beyond.
The life you’ve led, overflowing with ominous medical problems, symptoms, and diseases, is the life you’ve lived. It’s the reality you’ve known and experienced through which you’ve filtered your thoughts, emotions, and actions. You’ve been immersed in a sea of darkness throughout your life, a phantasmagoria of illness that at times seems more like a dark dream that never ends.
But unlike the prisoners in Plato’s Allegory of the Cave, you have transformed this darkness into light. A brilliant alchemist and magus, you have created a magical metamorphosis-an uncanny transmutation.
I agree with your conclusion that “the medical reality” has helped you “to live in the present.” Indeed, I believe it has empowered you, for you are a survivor. You ask whether your subconscious has been telling you “from the beginning” that “you don’t know how much time you have.” Perhaps, it has. Yet you’ve molded this uncertainty into something beautiful and splendidly positive.
Now, I wish to recommend a mental-spiritual exercise that sometimes empowers those who play this game. I can’t guarantee it will work. Yet it may open your heart and soul to divine possibilities. I’ve played this game many times. Even when I don’t achieve my specific goals, the process transforms me, opening me up to higher levels of consciousness.
It’s a game of visualization. I want you to imagine yourself healing and approaching a perfect state of health. Soon, you are immersed in a healing environment. You have received your new heart and kidney and your body welcomes your new organs. Each moment, each hour, each day your body is stronger and stronger. Right now, you feel strong and young. You’re a powerful man bathed in a sea of love. And you’re healed. Here and now, you’re healed.
Dr. Mel Waldman

Sandy Prisant said...

Dr Waldman,

You are right, my life has NOT been immersed in darkness. Perception is reality and I appreciate the exercise you propose. Thanks for your interest and concern.