Not so unusual a life, you may say.
But Libby's life IS unusual.
Libby was diagnosed at birth with Cystic Fibrosis. The medical staff gave her a 50 per cent chance of living to eighteen. And - her parents already had a daughter with Cystic Fibrosis.
Yet today Libby is thirty-three, enthusiastic, living a rich and fulfilling life. That kind of life is perhaps the hardest thing, because of her illness, and also the right thing. How is she capable of living this life? Why? Because she has always felt loved, and so she can give love away, and be a wounded healer. Be a blessing, not a burden.
Cystic Fibrosis is a brutal disease. In "A Life In Full," ("America Magazine," April 30, 2018) author Anna Keating, Libby's best friend from childhood, describes the terrors of C.F.:
"It causes persistent lung infections, and, over time, limits a person's ability to breathe. In patients with C.F., a defective gene causes a thick, sticky mucus to build up in the lungs, pancreas, and other organs. The mucus clogs airways and traps bacteria, leading to frequent lung infections and, eventually, respiratory failure. Cystic fibrosis is also a digestive disease. The mucus in the pancreas prevents the release of enzymes that allow the body to break down food and absorb essential nutrients."
Is it any wonder that parents today, told by medical professionals that they have diagnosed their unborn child with C.F,. feel terror, grief, shock, and, above all else, fear? Recently Jen Gann wrote an essay for New York magazine describing her experience of learning that her newborn son, Dudley, has C.F. She writes that, had she known of the diagnosis during her pregnancy, she would have had an abortion. So, she is suing her midwife for "wrongful birth" since her son's C.F. wasn't diagnosed while she was pregnant, taking away her ability to terminate. She imagines one day looking into his eyes and saying, "I'm sorry I didn't save you from your own life." She foresees his life as being one of unending pain and disappointment.
Ms. Gann is being overwhelmed by fear, fear that her son cannot lead a worthwhile life. She thinks his life will be, literally, useless. She has never, perhaps, met anyone like Libby. Libby's attitude is that yes, she has an illness, but her illness is not all that she is, and her illness does not define WHO she is. Her illness is part of her, yet this part does not overcome her ability to enjoy the life that she has.
Libby's parents were very instrumental in "normalizing" her childhood. Libby's Mom, a working mother of three, today tells parents of sick kids, "Focus on what they can do, not what they can't do. Treat them like they're living, not like they're dying, and savor every day...Yes, (your child) is living with this disease, but (he's) LIVING with this disease." She doesn't romanticize her experience of raising two girls with C.F. She cried watching Libby play in the park as a child. She kept her part-time job, not only to pay for health insurance, but because working outside her home gave her "a break from the pain." But she and her husband balanced normalcy with caution, teaching proper hand-washing, but then allowing sleep-overs, faithfully giving nebulizer treatments, but then allowing Libby to go horseback riding with her good friend Anna.
Libby says, "Growing up, I understood that C.F. was something really serious, but at the same time I was just normal. I had best friends and went to sleepovers and felt loved. C.F. was always put in such a nice perspective by my parents. I don't think I was ever angry or even terrified. I never skipped treatments (or trips to the hospital for week-long tune-ups) (and) having a sister with the same genetic disease normalized it and was key to my well-being."
In other words, Libby has always been surrounded by a loving, accepting community of family and friends, which has given her untold encouragement and strength of purpose. She has never felt isolated or alone. She has never felt unloved. She is not afraid of hard work. Serious illness has given her the valuable perspective of always wanting to make every moment count. She has always had the desire to get married. But, because honesty is part of who she is, while she dated her college boy friend, Libby told him that she had a greater chance than others of not having a full life expectancy. Her boy friend also wanted every moment in life to count. He told her, "The number of days I have with you would be worth it." She says, "That's when I knew he was the person I wanted to spend the rest of my life with."
Back to Jen Gann and her despair and grief because her son Dudley was born with C.F. Anna Keating, Libby's best friend, finds that Gann's suing her midwife raises many troubling questions: "If she wins her case, it will mean that the courts essentially agreed that it would be better if her son had not been allowed to live. Disability rights advocates express concern that this is tantamount to saying that lives lived with cystic fibrosis are less valuable, less worthy of care - in a word, 'unfit.'"
Yet Jen Gann is adhering to a moral code - yes, a moral code - espoused by eugenics that has been popular since the early Twentieth Century, especially among mainline Protestants and so-called progressives. Eugenics teaches that it is "a moral duty....to avoid having diseased or deformed children. The American Eugenics Society referred to them as 'people born to be a burden on the rest.' After World War II and the horrors of state-sponsored eugenics in Germany, this proposition was reimagined as 'genetic counseling.' Americans no longer speak of 'improving the quality of the race'; we simply do it as a matter of course." (Keating)
Margaret Sanger, founder of Planned Parenthood, even used the word "sinful" to describe parents who brought "unfit" babies into the world: "I think the greatest sin in the world is bringing children into the world that have diseases from their parents." Today, many people believe that "responsible parenthood" means being careful about what "kind" of child you bring into the world and maintaining a scientifically regimented pursuit of the good or comfortable life. Exactly what Pope Francis calls the "throwaway culture." And in this culture of rejection, "the parents most in need of support and assistance are not honored and sustained by networks of care but are isolated and blamed....With genetic counseling, elective abortion for the full forty weeks, and a culture that is uncomfortable with human weakness and difference, parents of ailing children suffer twice - once from their child's pain, and again because they are seen as responsible for it." (Keating)
Of course, Jen Gann is suffering too. Keating thinks she is suffering from this pervasive, community-induced shame. "Our culture's ideas about perfection through technology run so deep that they become difficult to examine. Ms. Gann blames herself for the stigma of parenting a sick child. She writes, 'I feel a deep responsibility.' Ms. Gann has been deprived of the ability to succeed as a member of her peer group, a peer group that does not see sickness, frailty, or interdependence as part of the human condition. She details the hours every day lost to Dudley's care. She is not part of a community that shares the load." (Keating).
Of course there are Counter-Cultural Communities that do value human beings regardless of their frailty, and exist through beautiful interdependence. These are the L'Arche Communities, founded by Jean Vanier. These communities proclaim the value of all human life to the disbelieving pagan culture that surrounds them, so that the response is, "See how these Christians love one another."
The L'Arche Communities, which exist throughout the world, are composed of people with intellectual disabilities and those whom society dubs "normal" living together, working, playing, sharing, and praying together, as a Sign: A Sign of Hope to combat fear; a Sign of what Welcoming Love looks like; a Sign that God loves all of us, that all human life is sacred because all are created in the Image of God; a Sign that, for God, perfection is a compassionate heart; a Sign that no-one is a Burden - we are all Blessing.
"L’Arche began in 1964 when Jean Vanier and Father Thomas Philippe, in response to a call from God, invited Raphaël Simi and Philippe Seux, two men with intellectual disabilities, to come and share their life in the spirit of the Gospel and the Beatitudes that Jesus preached. From this first community, born in France and in the Roman Catholic tradition, many other communities have developed in various cultural and religious traditions.
"These communities, called into being by God, are united by the same vision and the same spirit of welcome, of sharing and simplicity.
Aims:
1. The aim of L’Arche is to create communities, which welcome people who have intellectual disabilities. By this means, L’Arche seeks to respond to the distress of those who are too often rejected, and to give them a valid place in society.
2. L’Arche seeks to reveal the particular gifts of people who have intellectual disabilities who belong at the very heart of their communities and who call others to share their lives.
3. L’Arche knows that it cannot welcome everyone who has a disability. It seeks to offer not a solution but a sign, a sign that a society, to be truly human, must be founded on welcome and respect for the weak and the downtrodden.
4. In a divided world, L’Arche wants to be a sign of hope. Its communities, founded on covenant relationships between people of differing intellectual capacity, social origin, religion and culture, seek to be signs of unity, faithfulness and reconciliation." (L'Arche website)
Communities like L'Arche challenge the greater community to re-think what we mean by the "quality" of our children. Who is to decide the quality of life that a Dudley or a Libby has? Who is to decide what gifts someone has to give to the community? Libby herself says,
"My parents had my sister first, who was diagnosed with C.F., and they knew there was a one in four chance of me having the disease, and of course they hoped it wouldn't happen again. But thank goodness they would have never terminated a pregnancy with C.F., because I wouldn't be alive. And now 33 years later, people - and not just myself - say, 'What a beautiful thing.' I think (genetic) testing takes away this opportunity for people to find their strength. I don't think you know how strong you are until you don't have another choice. If we make choices to override that, then we miss out on an opportunity for things that grow us and change us for the better."
But fear and shame can so often overwhelm parents who are told that their child will be born with a genetic defect, or any kind of disability. They feel the pressure from society that whispers "You need your own life, society does not need this child, and you don't want your child to suffer."
But - who are we to prejudge how another human being will define his/her life? How many human beings would choose NOT to live? Keating challenges,
"We say, 'I don't want my child to suffer,' and we mean it. But what we do not say is that 'I don't want to suffer.' In our country, suffering is not seen as redemptive; winning is. As President Donald Trump reminded us when he mocked a reporter with disabilities, ours is a country divided into winners, and, as he calls them, 'losers.' We may criticize such outright cruelty and prejudice against people with disabilities and those with chronic illness, but there is a slippery slope between making fun of people with disabilities or illness, dehumanizing them, and killing them before they are born. How different are political conservatives and liberals on this issue when, according to Kaiser Permanente, 94% of pregnancies in the United States with a C.F. diagnosis end in abortion? Of course, there are partial political solutions: universal health care, a robust social safety net, laws restricting late term abortions. These are all good things. But real change would also require a change of heart."
Having a change of heart, for all of us, means giving up our false self, the self that is selfish, is isolated, that wants to live only for oneself. Having a softened, Christ-like heart means being able to say with the Christ of the Last Supper, "This is my body, given up for you." Our tender hearts trust in God to lead us, to strengthen us, to admit that the hardest thing facing us can be the right thing to do - even if that is giving birth to a child with disabilities or a genetic disease. A compassionate heart says to this child, "I see Christ in you. I will continue to see Christ in you even though my life is going to be incalculably more difficult. I trust that you are valuable to society. I trust and believe that we will give each other joy." Being able to pray, to invite God into our decisions, our lives, is the only antidote to the twin poisons of fear and shame, the only medicine that infuses us with compassion and hope.
But also, we are more compassionate to others who are less than "perfect" when we have the humility and realistic vision to accept that we are all disabled in some way - and then become wounded healers. Henri Nouwen, priest and beloved spiritual writer, lived at a L'Arche Community in Canada, and reflected,
"Nobody escapes being wounded. We are all wounded people, whether physically, emotionally, mentally, or spiritually. The main question is not, 'How can we hide our wounds?' so we don't have to be embarrassed, but 'How can we put our woundedness in the service of others?' When our wounds cease to be a source of shame, and become a source of healing, we have become wounded healers."
Know your own weaknesses, your own disabilities. Become a wounded healer, like Jean Vanier and Henri Nouwen.
Like Libby.
Open your heart and be a blessing, not a burden.
Like Libby!