It's not that I don't want to endure the ignorance of people who tell me I'm "lazy" or "not trying" when they don't actually ask or care about my illnesses. I've been told many times throughout my life that I have the "patience of Job" (and now it seems I have similar "friends" as he had too). But mean spirited people have a way of sucking the strength and stamina right out of me, like fire can suck oxygen out of a room.
I found this article and I'll let it say for me what I don't chose to spend my dwindling time saying again. It's also for all the people who are surrounded by those who just don't "get it" because they don't have to "walk it".
There are some who do understand. If you are living with Chronic or Terminal illness, please click on the LINK at the bottom of the page if you need some encouragement.
Love Laura-Lee
My thanks to Stan Goldberg for letting me reproduce it ... and for writing what so many people cannot say because they haven't the ability, strength or are simply no longer here to say it.
Just a reminder: The human race carries a 100 % Mortality Rate. You might want to consider that it will one day be "your turn" before you decide to skip over this article. YOU might need it some day.
A Guide to Terminal & Chronic Illness for the Healthy
A client who was dying once said to me, “Every day I feel as if I’m on one of those exercise boards that rest on a ball. Just when I steady the damn thing, it starts moving and I’m struggling again to balance myself. Why don’t people realize that’s what my life has become?”
I’ve heard similar descriptions for thirty years from clients and patients living with chronic and terminal illnesses. Many believed that not only did they have to deal with the effects of their illness, but also the unskillful acts of friends and loved ones who didn’t understand what they were experiencing. And that’s the purpose of this article: to explain it.
THE ELEMENTS
Lack of Control
Imagine for a moment that your attitude about living is heavily shaped by people, objects, and activities. It could be an abusive boss, a landlord intent on evicting you, or a car that constantly breaks down. While oppressive, you could act. You could move on to another job, find a new apartment, or use public transportation.
But what if none of these choices resulted in acceptable consequences? If you quit work, you might not find another job in this economy. If you gave up your apartment, you might become homeless. If you couldn’t afford to repair or replace your car and there was no public transportation available, you’d be stuck in your neighborhood.
People who live with chronic or terminal illnesses constantly experience a lack of control. If I have an advanced case of CPOD (chronic pulmonary obstructive disease), I know that without proper medication and the constant use of oxygen I’ll die. On one side of the scale is death. On the other, the side effects of the medication, minimal movement, and oxygen. No contest. I’ll choose the medical protocol—not because it’s something I desire—but rather because it’s something more acceptable than the alternative.
Loss
The feeling of losing something that gave your life meaning is profoundly upsetting. And it happens often with chronic and terminal illnesses. Unfortunately, the magnitude of loss is often thought of in terms of someone else’s sense of what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit is inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered around knitting, the loss is devastating. Many chronic and most terminal illnesses result in life-changing losses. The ability to knit may disappear, but its memory is constantly present.
Physical Effects
We think with our minds, not our bodies. But we know the relationship between mind and body is strong. In my hospice work, I’ve watched how the physical effects of a tumor changed a calm, peaceful man into a paranoid, aggressive person. While he sometimes understood that the cancer was changing him, during those lucid moments he realized that he had no control over what was happening to him. The ability to think and act rationally can be effected by changes in metabolism and the occurrence of pain. I’ve never had a client or patient who chose to be moody or act irrationally. There always appeared to be a cause. And often it was a physical change.
We think with our minds, not our bodies. But we know the relationship between mind and body is strong. In my hospice work, I’ve watched how the physical effects of a tumor changed a calm, peaceful man into a paranoid, aggressive person. While he sometimes understood that the cancer was changing him, during those lucid moments he realized that he had no control over what was happening to him. The ability to think and act rationally can be effected by changes in metabolism and the occurrence of pain. I’ve never had a client or patient who chose to be moody or act irrationally. There always appeared to be a cause. And often it was a physical change.
Uncertainty
For many people with chronic or terminal illnesses, predictability may be an illusive state of being. One day, the illness is controlled either by medication or who knows what, the next day it comes on with the power of a sledgehammer. On good days, although there’s jubilation, there’s also the fear that the reprieve will end. On bad days, there’s the fear that it will persist and never relent. Wondering if the pain will ever stop might make it difficult for someone to be supportive when a friend complains how his wife never lets him choose the movie they’re going to.
For someone with a terminal illness, there is certainty, but it’s not desirable: there’s the knowledge that the illness will continually progress. The uncertainty involves the course it will take. People with terminal illnesses often wonder how much pain they will have to endure or the extent of reduced abilities until the body just gives up.
THE INTERACTION
It is difficult to prevent the effects of any one of the above elements from having a negative impact on relationships. Living with all of the elements, and quite often having to deal with them simultaneously, is mind-boggling. Experiencing chronic and terminal illnesses is not a static event. It’s constantly changing as each of the elements takes its turn effecting one’s mind and personality.
copyright 2010 Stan Goldberg, stangoldbergwriter.com
This article can be reproduced and distributed without charge for any non-commercial project if the source is provided.
