Quality of Life

"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.

It might be helpful to take a look at some examples, First is Blessed Chiara 'Luce' Badano.  She was known for her luminous eyes and smile, the care and love she showed to those around her, even as bone cancer slowly took her life.  Each moment of life, to her last breath, was so important to her that she refused morphine for two reasons: to offer and unite her suffering with that of Jesus, forsaken on the cross, and because she wanted to be lucid.  One of her more well known quotes is "At this point I have nothing left.  But I still have my heart, and with that I can always love".

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.

Reconciliation and Persons with Disabilities

"In this sacrament [of Reconciliation], the sinner, placing himself before the merciful judgment of God anticipates in a certain way the judgment to which he will be subjected at the end of his earthly life.  For it is now, in this life, that we are offered the choice between life and death, and it is only by the road of conversion that we can enter the Kingdom, from which one is excluded by grave sin."                                                                                                                                                      (CCC 1470)

Not infrequently when the subject comes up, the response- sometimes even by a priest- is to downplay the importance of the Sacrament of Reconciliation in the lives of persons who have disabilities.Variations of "what sin could he possibly have committed" or in general speaking of our friends in almost angelic terms.  This attitude is first of all, not realistic, and ultimately does our friends a great disservice.  So, I'd like to spend some time talking about how this sacrament is not only applicable, but essential in the lives of persons who have special needs.

This attitude is commonly directed toward folks who have an intellectual and/or developmental disability.  And to be sure, the US Bishops do tell us, "only those who have the use of their reason are capable of committing serious sin" (Guidelines for the Celebration of Sacraments with Persons with Disabilities 23)  So, yes, some individuals can be safely assumed to never have committed a serious (mortal) sin.  

That said, even young children and individuals with an intellectual disability, are often aware of having done something wrong and experience to some degree feelings of sorrow and remorse (contrition).  These individuals may not be able to specifically describe their sin, but are most definitely aware.   

People who have disabilities are just that- people.  They have moods, challenges, good days and bad days, a range of emotions and behaviors, some of which are in their control, others that aren't.  They are affected by how they feel physically and emotionally.  The difference is as one catechist so perfectly puts it is their transparency.  These individuals do not have the ability to put up the masks that most of us can- if they are having a bad day, you will know it, if they are joyful, they want to share it, and you will know what they are thinking.  

I heard a story recently that is a perfect example.  Lisa is on the autism spectrum and very attached to one of her catechists.  One day, this catechist was not able to give her as much one on one attention as she wanted.  Lisa became very agitated, and had an outburst that ended with her aide having to come and get her, and her shouting "I hate (catechist's name), I hate (catechists name)" as she left.

The next day she, with the help of her aide, called that catechist, said said she was sorry and told the catechist that she loved her.  

The US Bishops tell us that "As long as the individual is capable of having a sense of contrition for having committed sin, even if he or she cannot describe the sin precisely in words, the person may receive sacramental absolution." (ibid 23)  

In fact, even those "who cannot experience even minimal contrition, may be invited to participate in penitential services with the rest of the community to the extent of their ability" (ibid 23) 

And communication skills are not a barrier.  The bishops tell us that "sorrow for sin is to be accepted even if this repentance is expressed  through some gesture rather than verbally"  The priest is simply asked to act with prudence and discretion in asking questions and assigning a penance. (ibid 25)

But WHY... why is it so important that this sacrament not be neglected or downplayed for these individuals?  To begin to understand this, I'd like you to take a close look at this picture from our summer retreat.  For some context, Fr. Dan is speaking about reconciliation, and will next move to the chapel for anyone who would like the sacrament- or even just to talk.  Notice how intent the faces of these individuals are as Fr. Dan shares his own story, and talks about healing relationships, and how God is always ready to forgive us.   

In baptism we are given God's own life, new life in Christ.  Yet, just as our bodies still experience suffering, illness and death, so this new life can be weakened or lost by sin.  Jesus came as a healer: "physician of our souls and bodies".  Often, as in the case of the paralytic, Jesus healed physically through spiritual healing- the forgiveness of sins.  (cf. CCC 1421) 

The call to holiness and the choice of life and death is for all.  Sometimes- as in the case of infants and individuals who will never reach the age of reason, their parents speak for them, obtaining the grace of the sacraments- choosing life.  The great majority of people, however- those with disabilities included- do have at least some awareness, and a sense of contrition, and so need to be formed for this sacrament in a manner appropriate to them, and to have access to it.  Reconciliation is part of each person's call to holiness and constant conversion- working to conform our lives more and more perfectly to Christ, our model.  Which is why it is strongly recommended to confess even venial sins. 

Regular confession helps us to form our conscience, and provides grace to fight against any tendencies toward sin we might have. Reconciliation provides an opportunity to receive guidance, and for satisfaction, doing what is possible to repair any harm done.  Unquestionably individuals who have disabilities are faced with temptations, stresses, challenges, frustrations, irritations and hurts each day- just as we all are.  The Sacrament of Reconciliation provides the grace and strength to face these temptations and challenges with virtue, and a means to repair their friendship with God, to seek forgiveness, when they respond in a way they know is not right.  

So, ultimately persons who have disabilities need Reconciliation for the same reasons we all approach the sacrament... 

• Reconciliation with God, and a recovery of grace
• Reconciliation with the Church
• Remission of eternal punishment brought about by mortal sin
• Remission, at least in part of temporal punishments resulting from sin
• Peace and serenity of conscience, and spiritual consolation
• An increase of spiritual strength for the Christian battle (CCC 1496) 

         

Sharing Your Story

I was preparing to give a talk as part of a panel on multicultural ministry, which included special needs.  I had an idea, and months to prepare it, and over those months went through any number of approaches, statistics, photos, teaching methods etc...

I think it was about two weeks prior when it suddenly hit me how to start this talk, and from that moment on it was a much smoother process- though it had most definitely taken a different turn. Finally I found myself standing up to present and this is how it began: 

"I'd like to introduce you to a very special person, my sister Mary..."  the room was pretty much silent as I told, well, part of our story- to tell the whole thing would take much longer than 17 minutes!

I told my family's story to illustrate what is possible when a parish embraces as one of their own each member of their community: love, mutual help, sacraments- all from a parish without an inclusion ministry or a program for adaptive faith formation.  The reaction is what I did not expect- people were so happy to hear about Mary, they related to my family's story and took in the rest of the talk (which was much more informational) in a completely different way.  So, totally unscientific and off the cuff, I wanted to share some of the good reasons to share your own story.

Empathy: Isolation is probably one of the easiest pitfalls for a family who has a member with special needs.  Yet, we all have a need not only to be heard, but to be validated and to know that we are not alone- and dare I say, not crazy, in our experiences and feelings.

Hope: It is so easy for families to get mired down in daily tasks and struggles- and particularly when your family includes a member with special needs, often life can seem chaotic, but really does have a rhythm all its own. Families and individuals do not always know, or sometimes need to be reminded of all that is possible- participation in liturgical ministries, faith formation and sacraments, parish projects or events, just to name a few.  To know that there is a place they belong and that the gift of the sacraments is available to their family member can be a beacon of hope, and a life preserver.

Because bulletin announcements don't work- nor do surveys in the pew...a personal story or invitation is the BEST way, hands down, to engage others, and get people to come to any event, program, etc... this can be an opportunity to reach out to other families you might already know from your neighborhood, or school or work or...???

You and your experiences have something to teach!  Talk about hard won wisdom... and you never know where someone is on their journey of faith, and struggles they may have, you never know when someone may need to hear what only you can say- or show.

Building a community: Each individual who speaks up and makes themselves known helps a parish get to know themselves a little better.  By sharing your story, you can be part of that.  As a result, the parish is better able to plan with you, instead of guessing, or worse, assuming there is no need, and so better meet any needs there may be.                    

"The Disabled Disciple"

Some of my reading lately has gotten me thinking about discipleship and what that looks like for a person who has a disability.  You know what?   I have come to the conclusion that, frankly, it doesn't look all that different than it does for anyone else!

Let's start with some common denominators... 

First, each of us is created in the image and likeness of God, our Creator.  In this fact, EACH life, EACH person finds his or her greatest and sure dignity.  

We are created unique, with variations of individual abilities.  Each of us has our strengths.  Each of us has our weaknesses-  in other words, we are all in one way or another disabled.  Some weaknesses, some fragility, are easier to disguise than others.  In fact, the definition the National Catholic Partnership on Disability (NCPD) gives for disability is "the normal and expected outcome of the risks and stresses of the living process"... huh. 

When a person is baptized and confirmed, we are each given the same Baptism in the name of the Father, the Son and the Holy Spirit, the same outpouring of the Holy Spirit, the same priestly, prophetic and kingly mission- the same mission to evangelize "to make disciples of all nations" [Matt. 28:19].  There are no conditions placed on these things- Jesus did not say "Go therefore and make disciples of all nations, baptizing them in the name of the Father, and of the Son and of the Holy Spirit... unless you or they cannot walk, or see or read or...".

Let's think about this for just a minute... Jesus spent a sleepless night being interrogated, was beaten nearly to death, THEN given a large wooden beam to carry, which he was nailed to.  In a very real sense Jesus- GOD- was disabled.  What was he doing during this time?

He was the totally loving Son of the Father- and obedient to the Father's plan and will to his last breath. 

He was teaching- telling the women not to cry for him, but rather to look to their own hearts, and those of their children- even his cry of "My God my God why have you forsaken me" was not so much a cry of despair, as a reminder of ultimate hope and trust- referencing Psalm 22, which any Jew listening would immediately recognize.   

He was forgiving: both to those who were in the midst of enacting his cruel punishment, and extending mercy and hope to the repentant thief who was crucified next to him.  

He loved!  He gave himself totally, even his greatest treasure- his Mother-to us, and gave us to her.

In what seems to be his weakest moment, Jesus achieved redemption and salvation for us all, and through that moment came the greatest hope anyone can ask for- love, mercy, and eternal life. 

Were there certain things he was not "able" to do at that point?  Absolutely!  Among other things, I'd imagine Jesus was not running- or even walking, he would not have had breath enough to sing.  Yet, with everything he had, to his fullest capability, he loved the Father, he loved those around him, and continued his work.  This is something anyone can do, no matter the situation in which they find themselves- and no matter how much or little time he or she is given.  

You may have heard of the story of baby Shane Haley, who was born just about seven months ago. When he was prenatally diagnosed with anencephaly, his parents decided to make the most of their time together- forming a "bucket list" of places and people to visit while he was in utero, and sharing their experience and memories with their friends and family on social media.  Their witness reached further than they could ever have imagined, with nearly a million followers, and their story was featured on many mainstream, national news channels.  What was their witness?  That of a family who love one another, who recognized the beauty and life and dignity of their child, who had no guarantee of life outside his mother's womb.  His short life- which included baptism, has brought attention to this beauty and dignity for others in similar situations.  as the epitaph on his headstone attests, "there is no foot too small that it cannot leave an imprint on this world"  

We all need help along the way- companions, and cheerleaders and champions to help- and sometimes insist- that we grow to our fullest potential.  In this too Jesus is a model- he had his parents, his helper Simon, and faithful companions even on his journey to Golgotha.

In my work I have encountered individuals who witness to discipleship in such amazing ways- a man who is simply a radiant light of joy and faith.  He was a medical student before suffering a traumatic brain injury in a car accident that also killed his fiancee- and also had to work to regain mobility after being struck by a car just a few years ago.

I have listened to a young woman cantor at Mass, who a handful of years ago had difficulty drawing breath enough to speak.

I watched and listened as a young man who is blind, and on the Autism Spectrum, confidently walked up to the ambo and proclaimed the reading beautifully.

One group prayed with a participant who was was going in for surgery for cancer, and celebrated with her when the treatments were completed.

At our retreat last year, we had an incident wherein one of our participants, who was most likely a little over-tired and over stimulated, hit another- more than once.  In checking with the man who had gotten hit, he was most definitely shaken up, but quickly said he hoped the young woman (who acted out) was OK, and readily forgave her when she came over to him later and apologized.

Our lives are complicated, joyful and sometimes painful- and all of us have weaknesses, disabilities if you will.  What I hope you have seen here, is that there is SO MUCH to learn from those who cannot mask their fragility and disability, that they are called and desire to serve, and that they, and we, need companions on the journey of discipleship, to encourage each other in developing and sharing our gifts, and to walk alongside each other in our need.         

"Where is the star?" Following the Model of the Magi

The Holy Father's homily today was very poignant.  In it, he presents the Magi as models for all of us who seek The Light, and the temptations we face in our journey- that of our own perceptions and expectations, which can deceive us, and the temptation to miss, or reject the humility with which God comes to us.  In the tiny, helpless baby they recognized the One they were seeking, a recognition symbolized by the gifts they brought.

Adoration of the Magi

Pope Francis said something which got the juices running: 
"What is the mystery in which God is hidden? Where can I find him? All around us we see wars, the exploitation of children, torture, trafficking in arms, trafficking in persons… In all these realities, in these, the least of our brothers and sisters who are enduring these difficult situations, there is Jesus (cf. Mt 25:40,45). The crib points us to a different path from the one cherished by the thinking of this world: it is the path of God’s self-abasement, that humility of God’s love by which he abases himself, he completely lowers himself, his glory concealed in the manger of Bethlehem, on the cross upon Calvary, in each of our suffering brothers and sisters."

He is talking about a real stumbling block- something unexpected which challenges the way we view the world, and in a particular way, those around us.  Humility, littleness, real suffering and difficulties, and God in the midst of it all.  That really is a curiosity, a mystery worth thinking about for awhile... God- all knowing, all powerful, eternal- choosing to come as one of us, a newborn infant who needed all the care and protection of his parents, who grew up as we do, learning, working, loving, tempted, suffering and dying. 

Ecce Homo (Behold the Man)

This mystery is very much among us, and the same stumbling blocks we trip on, grasping for understanding- violence and exploitation of all kinds, war, homelessness, even illness and disability.  The people who live in these situations are different expressions of the same path that was foretold and brought into being in Bethlehem and ultimately on Calvary- that of humility.  It was in humility that God revealed Himself, and in which he still does.  

So what's the point of all this?  Well, really a question: what do you see when you look around you?  What do you see and feel when you see a homeless person slouched against a building or at an intersection or when you look into the face of a refugee, or a person with an intellectual or developmental disability?  I can tell you for myself, it is difficult to see faces, eyes, personality- it is hard to not be uncomfortable, to know what to say, and certainly to have much expectation. Yet there is something I have learned: these are people who know, among many other things, something about humility.  Each time we are with our special friends, we learn about joy, gratitude and patience, about providence and perseverance, and about taking care of each other- and a million other things we are always amazed by and which I would say, are the fruit of humility.

Did you read the story about this man, who was given $100 and then followed to see what he would do with it?  Well, as expected, he went to a liquor store.  Then, to the great surprise of his follower, the man came out with a large bag of food, which he proceeded to share with others. 
The point?  If we allow preconceived ideas, our own perceptions of how something should be, to lead us, we can be deceived, we can miss reality.  Without humility we miss the light, which leads us to The Light, the Truth, and which is revealed to us in the little ones, the suffering ones, in those from whom we might least expect it.  

This doesn't make much sense compared with the things we are taught to value.  This is the shift in perspective the Magi had to make, and which is also our constant challenge, as Pope Francis reminds us:   
"The wise men entered into the mystery. They passed from human calculations to the mystery: this was their conversion. And our own? Let us ask the Lord to let us undergo that same journey of conversion experienced by the wise men. Let us ask him to protect us and to set us free from the temptations which hide the star. To let us always feel the troubling question: “Where is the star?”, whenever – amid the deceptions of this world – we lose sight of it." [my emphasis]