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One life to live (09/07/2008)
By Janet Lewis Burns
Someone may be trying to tell you about living with incurable illness. As someone looks in the mirror every day, the illness is always there; it always will be. “But it’s not terminal!” “You won’t die from it!” ”You’re really lucky!”

When they say those things to someone who is trying to describe what a nonfatal illness is, he or she might drop to their knees to kiss the ground in sheer thankfulness one moment and in the next may retort, “Damn! You mean I’m going to have to live with this curse forever!” “Yippee!” (sarcastically.)

Someone goes on to explain: brief destinations in daily life turn into stressful challenges. This illness one carries around often becomes heavy and cumbersome. One hopefully strikes out to enjoy their day with others, and can sometimes get away with it for a few hours. During smiles and pleasant conversation, the obvious signals break through, and it’s all about you again, the suffering one. It would be much easier to just stay behind.

Someone is telling you that incurable illness is a shell of loneliness. One can no longer cherish their own company, tormented within their own skin. They try to be carefree and to welcome their time alone as they used to. Strolling past a store window, eyes can’t resist staring at the stranger in the glass who bears the ugly, physical deficiencies of the illness. People begin to patronize and call you pet names, like “My Dear.” You wish you had stayed home.

Every time the phone rings, you can’t help hoping that no one wants something from you. Sometimes the afflicted person dreads getting out of bed, that place where the illness stays at bay and gives in to rest, hidden under comforting covers, but responsibility is waiting today; turning over and going back to sleep isn’t an option. Those things you used to look forward to have become crosses which are sometimes too overwhelming to endure.

A person coping with the ravages of incurable illness often lives with a spouse, the “safe person.” The fear of being left alone is always there. The partner plays such a crucial role in the well-being of their loved one and keeps the household running smoothly.

A person who is constantly treating their body in order to function is no doubt a walking medicine cabinet. Get off schedule and everything goes haywire! In more than a few cases, a couple can’t afford the medications that would make life easier.

When one suffers every day, it’s discouraging to recall all the things they used to be capable of. People say, “You have a cleaning lady!” “Your husband actually does dishes and washes clothes!” “I wouldn’t complain!” “You’re on Medicare so young! How lucky!” “I sure wish I could retire!” (Sorry, an afflicted person can’t share your exuberance!)

Others don’t mean to isolate an ill person. Isolation is just part of the package! It doesn’t have to be a burden. It’s really up to the stricken individual. To survive and thrive is to realize that faith, hope, and a positive attitude give life that glow of purpose. A phone ringing is a person’s lifeline and a connection to others, as an integral member of community.

Family and friends love you as they always have and want your company as much as ever. You are the same beautiful person. They recall with deep affection and appreciation all you’ve done for them in your good health. When living with a disease exposes visible signs, most folks reach out to lend a helping hand and offer a smile and a kind word. If you need to talk to others with similar afflictions, there are plenty of opportunities.

Someone tries to tell you about living productively with an incurable, nonfatal illness. Diligence and fulfillment are more meaningful than ever! Unless you’ve been there, this may not sink in. The key word is “living!”

Someone may be dying to tell you that living is always worth the effort. Someone may need a hug! Carpe diem!

Janet Burns lives in Lewiston. She can be reached at patandjanburns@embarqmail.com.  


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