This is a question and a term we often hear bandied about. “I just want her to have quality of life,” or “How am I going to maintain quality of life?” Especially, for those of us who have compromised health, this is a matter of great concern. It’s being used in a political sense these days as people are living longer and maintaining quality in their daily life is often more challenging than it was in times gone by when life expectancy was much shorter. You can be certain that a young pioneer woman who could only expect to live to the ripe old age of 37 didn’t give quality of life much thought. She was too busy trying to make it through daily life, feed her family, scrub her laundry on a scrub board in cold water and survive the various plagues and influenzas that came by on a regular basis. Survival was her primary goal.
I was surprised by the definition of the word quality because it can have so many meanings from class consciousness to excellence. It’s one of those phrases, quality of life, which we use so often when confronting any changes in our health or the health of someone we love. It may come as a surprise to some of the population to know that those of us who have pain everyday and live with chronic illness are already there. We already worry about how we are maintaining our quality of life right now, today.
For many of us who are no longer able to work, we have lost part of our family’s income and have had to make adjustments. When I first became ill, we had to adjust our grocery shopping, give up that new car we were used to buying every few years and postpone that trip we had been looking forward to taking. We felt the loss of occupation and career by allowing it to make us “less” in our own eyes and in the eyes of others. Eventually, we worked it out as we asked ourselves who we were. If we were no longer a nurse, a teacher, a banker or a business man or woman, then what was our identity? Our quality was threatened as we grappled with the “who” of us and wondered “who” we now were if we were no longer the old “who.”
For others, their quality or excellence of life has been affected by the loss of a spouse or companion who didn’t expect chaos to visit them and decided they couldn’t live with chronic illness. “In sickness and in health” are only words to some who do not know the depths of love and sacrifice that many others have discovered. One has to wonder if they ever think about the shoe being on the other foot. Tyler Perry made an interesting movie a few years ago called DIARY OF A MAD BLACK WOMAN. It brings up that very point as a young wife is thrown aside for a new, hotter model only to face her husband being injured and needing her before their divorce is finalized; and to see him jilted by his lover since he is now damaged goods. It’s worth watching if you’re interested in exploring the subject of loyalty in marriage when quality of life is threatened. It also has some hysterical moments in it thanks to Perry’s female alter ego who takes the form of his hilarious character, Madea.
Perhaps, the whole issue of our existence depends on the relativity of this whole subject, quality of life. Is it the end of the world if we lose our health? Some of us can testify that it is not. We may not have chosen the changes we’ve had to face, but we’ve survived and overcome. In many cases, we have actually surprised ourselves by our adjustments and adaptations. In most cases, our value system has shifted and changed. Those activities, possessions and accomplishments we once sought are now a thing of the past and we have embraced new values and goals. We are living proof of the ability of the human spirit to sink or swim, flee or fight as we face life’s sometimes overwhelming challenges. It’s still frightening at times as we contemplate the future and what it holds for us, just as it is a concern for healthy individuals. “Will I be able to maintain quality of life?”
For those of us who have already faced the threat and loss of the ordinary in our daily lives, we can probably agree to sum up our needs.
LOVE: The importance of giving and receiving love is what makes life worthwhile. Love in both directions is life-giving, purposeful and enjoyable.
INDEPENDENCE: Our independence becomes our greatest desire. When one cannot perform life’s simplest deeds for oneself, your self-worth suffers greatly. Independence takes many forms but for most of us it means staying in our own homes or environs, calling our own shots as to when, what, who and where. It doesn’t have to be grand; just ours.
FUNCTION: Most of us have figured out, in order to remain independent or to achieve our highest level of independence we have to be able to function. If the word in real estate is “location, location, location,” the word in disability is “function, function, function.” This creates an impetus in us to walk, swim, go through surgeries, and always seek the physicians who can help us achieve this goal. We learn the vital importance of moving, trudging on and remaining as strong as possible.
COMFORT: Like all living things, most animals and also the plant world, we long for comfort. Food, drink, a comfortable temperature and a place to lay our heads for rest is what we seek. This is no small feat for those of us who live with chronic pain. We have to find that place of comfort with our pain medications short of addiction. We have to discover our area of daily movement short of injury and we learn the delicate art of compromise in our needs for the material comforts of this world. Many of us discover over the years that comfort comes not just from a down pillow or a warm coverlet alone but from the warmth and discovery of the depths of the human spirit, a loving friend and faith in the future.
HUMOR: Life is humorous, as we each have learned. Humor in all forms is helpful, healthful and life-giving. Whether we see it or feel it with the lick across the face of a loving pup, the clamor of a small child or watch it on TV or read something humorous, laughter is always available if we want it. Some days we have to go out of our way to find it but it is as vital as oxygen in our struggle with chronic pain.
Lastly, we grow and survive by giving quality of life to someone else. Have you seen on the news or read about the young man who owns a pizza parlor in Philadelphia? His name is Mason Wartman and his restaurant is Rosa’s Fresh Pizza. It all began, his sharing some quality of life, in 2013 when one of his customers noticed he served many homeless people and asked if he could help. The gentleman gave Mason an extra dollar and he pinned a note on the wall on a bulletin board that soon grew to hold over 500 Post-it notes. Each note represented a free slice of pizza for someone in need. Now, at least 18,000 free slices of pizza have been served in his establishment.
What does quality of life mean to you? I’m sure we each will come up with our own, individual answer. Here’s wishing you assistance on your search for that quality.