"We only have one life, and it's worth living it well" Bl. Chiara 'Luce' Badano
A couple of times recently the topic has come up about the concern over what "quality of life" a person has, or will have. Often this question circulates around a person who was given the diagnosis of a terminal illness, or a person who has a disability, chronic illness or pain. Now... I'll admit, I scratch my head over this one a little bit, mostly because this worry is a little foreign to me and my experience. That said, it is the language of our culture, and though the premise of it is flawed it does express a valid concern, so lets begin with a working definition... "Health-related quality of life (HRQoL) is a multi-dimensional concept that includes domains related to physical, mental, emotional and social functioning. It goes beyond direct measures of population health, life expectancy and causes of death, and focuses on the impact health status has on quality of life. A related concept of HRQoL is well-being, which assesses the positive aspects of a person’s life, such as positive emotions and life satisfaction." [my emphasis] http://www.healthypeople.gov/2020/about/foundation-health-measures/Health-Related-Quality-of-Life-and-Well-Being
Before we begin, I'd like to point something out: "focuses on the impact health status has on quality of life" [i.e how we function physically, mentally, emotionally and socially]. This seems to me where the primary flaw in the "quality of life" language lies- it is at it's heart purely subjective, the answers depending primarily, I would argue, on a person's state of mind at the point they are asked the question. A person who is otherwise perfectly successful and healthy, can still be desperately unhappy and dissatisfied in life.
There are also people who are not beatified, but who live life to the fullest each day. Nick Vujicic was born without limbs. He suffered bullying, and dealt with suicidal thoughts. If asked, he will tell you, of course he would LOVE to have arms and legs, to be able to hold and hug his wife and son, to walk and run. BUT he would add, he has realized that having those things has not necessarily made someone happier, or a better person. What brings someone joy is real hope, hope in the Father who loves us unconditionally and who has a plan for each of our lives, that we continually get up in the morning and work to know and live.
Another example is Bethany Hamilton. For any who may not be familiar with her story, Bethany was 13, and on a track to become a professional surfer, when she was attacked by a shark while resting on her board, and lost her arm. Her struggle to gain perspective was real, as was her determination to get back in the water and compete- something that took a group effort, hard work, adaptation, and even experiencing failure. Her experience in Thailand, which you get a glimpse of below, was one of her 'aha' moments in shaping a new perspective. She also found out from a surprising outpouring of support, that her very visible determination and struggles were providing a lot of inspiration for those in a similar situation who were not so visible. In the movie, toward the end she is asked if she could go back to that day, would she still go surfing? Her response is that she would not change what happened to her because "I've had the chance to embrace more people with one arm than I ever could with two."
It is extremely worrying to think that critical decisions could be made based on how well we are able to function physically, mentally emotionally or socially (usually compared to what we perceive as optimal functioning) or out of fear- fear of pain or suffering, fear of being dependent on others for care, fear ultimately, of death.
Now to get a little more personal. This is Mary, my sister- isn't she pretty?
When she was 18 months old, she contracted meningitis that despite doctor visits went undiagnosed. This culminated in a stroke, all of which left her deaf, blind in one eye, with seizures and cerebral palsy-like effects on her left side, and also greatly slowed her intellectual development. Providentially she was so young that she was able to relearn much of the motor skills she had been developing, and continue to learn to the point that in many ways she is quite independent!
Yet, the reality is she requires full time, personal care and always will. Her ability to communicate has been very much affected, though she's gotten very good at expressing what she needs/wants, it still can take a lot of guessing, especially when something seems to be wrong and it isn't a simple physical need.
Here's the thing though- Mary is happy, and outgoing. She loves being around people, and people for the most part love being around her. She is intuitive to the feelings of others, and generous with her million watt smiles and hugs. Mary makes you feel like a rock star when she sees you for the first time- whether it's been a few days or a few months.
Our lives have been greatly shaped by Mary's presence in our family. We have learned compassion, and patience, we have learned to look at people beyond the surface, just to name a few. We have seen what pure joy and love look like.
Our value is not based on what we can do, and contribute to our families and society. A priest recently asked a wonderful question in his homily that I have thought of often since... "What can we do to increase God's love for us...? Absolutely nothing." Our dignity and value is based in the fact that we ARE, We are here, and fearfully and wonderfully made in HIS own image and likeness.
Life, and one's quality of life is more than our physical, mental, emotional and social status, and our sense of well-being or lack thereof, though no doubt, these factors ARE important.
This perspective is challenging for sure. It has to come from a place of faith and trust, that there is a Creator and that He is good, and wants good for us, and has a plan and purpose for each life. It has to come from a place of hope- understanding that there is more ahead than just this life, an ultimate destiny each of us is called to. Most of all it comes from love- real selfless love- first and foremost God's love for each one of us, and our love for Him, and for one another.
