When in Doubt, Love!

Wedding photo 2

Saturday, June 30, is our 57th wedding anniversary. It’s a bittersweet, reflective time!

Linda has reached the stage in her disease that she rarely acknowledges my presence. I’m not sure that she now knows who I am. After being married for 57 years, expressions of love and affection go largely unacknowledged.

Several times throughout the day, I stand or sit beside her bed, take her hand, caress her face and hair, and kiss her on the forehead or cheek. I feed her, brush her teeth, watch her sleep.

Often in the quiet of the early morning, I sit in silence beside her bed and wonder: Does it matter to her that I am here? Who am I to her now? What is going on in her mind? Why does my presence sometimes seem to agitate her? Why does she often say “quit” when she is touched?

Those are painful questions for which there are no clear answers. But I have come to this conclusion: When in doubt, love! I don’t always know how best to express that love, whether leaving her alone is sometimes the loving act. But withdrawing love is not an option.

It’s not because I promised 57 years ago that I would love her in “sickness and in health.” I don’t love her out of a sense of duty. Loving her brings joy, meaning, fulfillment to my own life. Neither do I consider her a “burden.” Just her being is a gift! I love her now as she is, as I loved her as the gorgeous and vibrant young woman I married.

There’s a mystery in all this! Linda continues to teach me a lot about life and what it means to love in this broken and confused/confusing world.

Political chaos, corruption in high and low places, mass shootings, normalized hate-filled rhetoric, disrespect for others, cruel separation of migrant children from families, scorn for the poor, widespread racism, arrogant nationalism, . . .! Feels like the nation has lost its mind!

And my own beloved denomination which I have served since my teenage years is tragically divided over homosexuality and threatens to split as we did over slavery in the nineteenth century. To do so, will damage our witness to God’s reconciliation in Jesus Christ and simply mirror the brokenness in our nation. Feels like the church has lost its mission!

I don’t know the best way forward for our nation. Political parties have conflicting agendas and visions. Compromise and the common good are being sacrificed on the altar of personal power and partisan agendas. I know that we as citizens can’t withdraw from the process, even if we feel our vote and advocacy make no differences. Love demands that we stay engaged!

Neither do I know the best way forward for The United Methodist Church. Some caucus groups are drawing lines in the sand and maneuvering politically to win votes, all in the name of faithfulness to truth and doctrine. I realize that whatever is done will be rationalized as devotion to God and our Wesleyan tradition. But I think John Wesley had it right, “All schism is a failure to love!” At least, least us confess our failure to love!

I sometimes feel overwhelmed! Grief and loss are constant companions. So much is beyond my control. My life partner seldom knows me. The future looms ominous. Some problems seem unsolvable. The nation totters. The denomination falters. Doubts arise.

Yet, I am learning from a love honed over more than 57 years this practice: When in doubt, love!

So, I will continue to love Linda even if she doesn’t recognize me or acknowledge my presence.

I will stay engaged on behalf of justice, compassion, and hospitality in our land and love those whose political views are contrary to mine, even if it seems to make no visible difference.

And, I will continue to serve the church whatever institution emerges and whatever forms my service takes, even if I don’t see any results.

After all, love will win! God IS love! The pivotal victory has already been won in the Crucified and Risen Christ.

Amid personal suffering, political corruption and violence, and rigid religious threats, Jesus LOVED and prayed, “Father, forgive them; they know not what they do.”

When in doubt, we will love as Christ loves us!

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That Which Endures

A friend whose wife died from Alzheimer’s disease said, “Living with dementia is like having a perpetual funeral.  Every day brings another loss until nothing remains but grief.”

I can relate to the feeling! Dementia diseases gradually strip away memories, ideas, decisions, mobility, initiative, bodily control, recognition of family and friends, and finally breath itself. Each loss triggers grief and the one you miss is sitting beside you. We lose them a brain cell at a time!

Of course, it isn’t just dementia that strips life from us. Everything passes away—our looks, our intellect, our abilities, our energy, our mobility, our health, our independence, our cherished relationships, our productivity, and finally life itself.

Is there anything that survives through all the losses? Is there a constant which holds us together amid perpetual change, persistent loss, and death’s finality? Or is grief all we have left?

Living and working among people with dementia has confirmed for me that one reality not only endures but actually thrives amid loss of cognitive and physical functioning. Dementia erases memories, strips away knowledge, garbles or mutes language, diminishes abilities, narrows relationships.

But this remains:     L    O    V    E          hands_11.4.2017

The Apostle Paul declared it more than twenty centuries ago: “Love never ends. But as for prophecies, they will come to an end; as for tongues, they will cease; as for knowledge, it will come to an end”(1Corinthians 13:8).

Love is not sentimentalism or warm fuzzy feelings.  It is entering the messiness, anguish, resistance, and hostility of the beloved with a non-anxious, gentle presence. It is action on behalf of the wellbeing of the other. Love is radical acceptance when behaviors feel unacceptable; compassion without expectations; continuing to care when the caring is not returned.

The expressions of love change, but the reality endures. I have known scores of people with one or more of the dementia diseases. I have yet to meet one who did not respond to being loved, even those in a comatose state. And even when the ability to express love is gone, love is generated with those who enter the person’s story.

Linda no longer comprehends the word “love.” Yet, she expresses and responds to love! Language now fails her; but gentle touch, brushing her hair, a smile assures her of value and worth. She can no longer feed herself, so slowly placing food in her mouth becomes a sacrament of love. Mobility is gone! Turning her in the bed or smoothly transporting her to a recliner become means of bearing her in the arms of compassion.

She no longer has control of bodily functions. Washing her and keeping her clean is an exercise in love’s humility and servanthood.  Her filters are gone and emotional control is lost. Being with her, absorbing her anger and frustration with non-anxious presence enfolds her in unconditional love.

The love is reciprocal. Linda’s expressions of love are rarely verbal. Occasionally, she will say “thank you” to a service rendered.  But her more typical expressions of love are these: a fleeting smile, reach for my hand, raising of an eyebrow, look of recognition in her eyes, calling my name or that of our daughters, growing calm with a caress of her face.

Love endures because love is God! The Scriptures clearly declare: “Beloved, let us love one another, because love is from God; everyone who loves is born of God and knows God. Whoever does not love does not know God, for God is love.” (1 John 4:7).

Love is that which is ultimate and the most permanent reality in the universe! Everything else may pass away. LOVE is as permanent as God for God is Love!

In All Things God Is at Work for Good

A young student in seminary preached a sermon on Romans 8:28: “We know that all things work together for good for those who love God, who are called according to his purpose”(NRSV).

He waxed eloquently on how all our circumstances are God’s gifts; and, though we don’t understand, God has a reason for those circumstances and events. He made a compelling case for the sovereignty of God and the importance of simple trust.

The professor wasn’t impressed! “You may not have lived long enough to preach on that text,” Dr. Ferguson commented.

“I’m not sure you have suffered enough to proclaim with authenticity what Paul is saying,” he added.

“The man who wrote that endured shipwreck, beatings, imprisonment, rejection, and eventual execution,” the professor went on to say.

Then, he asked, “Are you saying to him, ‘just suck it up. God had it all planned for your good? Or, is Paul inviting us to join God’s efforts to bring good from bad circumstances?”

On July 5, 2002, Dr. Ferguson’s critique and my interpretation of Romans 8:28 were put to the test.

In May 2002 I underwent triple by-pass surgery to avoid a blockage in the left anterior descending artery (LAD) in the heart (the “widow maker”). The surgeon said that I should be back to full speed in ten to twelve weeks.

After a month of cardiac rehab, the cardiologist released me to travel to Lake Junaluska for further recuperation.

All was going well until the morning of July 5. I suddenly developed chest pains. I was having a heart attack and was rushed to the hospital. The cardiologist tried unsuccessfully to penetrate the blockage in the LAD. He then proceeded to put a stint in another area which relieved the pain.

I had survived the collapse of “the widow maker,” but the extent of the damage to the heart awaited further evaluation. It was an uncertain time, with the preferred future now in serious doubt.

After several tests, the results were in. Significant damage had been done to the heart muscle. A six month leave from my duties as the bishop in Mississippi followed. Those months were filled with lament, uncertainty, questioning, grief, searching, and discernment.

Will I be able to continue as an active bishop? Will I be disabled? Will I continue to have heart attacks and die? If I can’t continue in the position to which the church has called me, what will I do? Where is God in all this?

I never assumed that God caused or willed my heart attack, though I admit to some anger toward God for not preventing it! What is God’s will in these circumstances? What good can possibly come from my now damaged heart?

During the subsequent months of prayer, conversation with family, friends, and doctors, it became apparent that continuing beyond the quadrennium as an active bishop was untenable. But what will I do?

Thanks to Greg Jones, a friend and Dean of Duke Divinity School, a new door was opened. I was invited to be considered for a faculty position at Duke. Then came eight of the most fulfilling years of my life and ministry!

In 2009 came another life-changing blow! Linda was diagnosed with Frontotemperal Dementia, a progressive neuro-cognitive disease which would gradually rob her of independence and normal capacities. What were we to do?

Again, lament and discernment moved to the forefront and another vocational change was in order. I relinquished my cherished faculty position. We moved near our daughters and I became caregiver to my beloved wife and partner.

Where was God now? How can I fulfill my calling as an ordained clergy while being a care partner for Linda? One way was to be the best care partner possible. That meant learning as much as possible about her disease. Also, I was invited to teach part time at the Lutheran Seminary. Then, I was asked to be the chaplain in the memory care unit in the retirement community. A couple of friends and I developed a course entitled “Dementia through a Pastoral Theological Lens.”

The last seven years have been an intense period of growing in love, patience, and compassion for those with dementia and their families. Joy has deepened. Love has matured.  The circle of relationships has been expanded to include more of the forgotten people. Trust in God has grown. Deep friendships have been formed.

Furthermore, I have been able to be with children and grandchildren in ways that would have been impossible had Linda’s disease not motivated us to move near them. Grace abounds! Life is good!

I now have a better understanding of Romans 8:28, “In all things, God is at work for good for those who love God, who are called according to his purpose.”  And, Dr. Ferguson’s comments now make more sense!

The Sacrament of the Present Moment

Catepillar1In response to a photo I posted which captured a moment of connection with Linda, a friend, Betty Cloyd, replied with the title of a book by the eighteenth century priest Jean-Pierre Caussade, The Sacrament of the Present Moment. The phrase captures the profound and transcendent nature of each moment.

Sacrament is often defined in the words of St. Augustine of Hippo as “an outward and visible sign of an inward and spiritual grace.” The English word comes from the Latin sacramentum, which means to make holy, or to consecrate. The term is also derived from the Greek New Testament word “mysterion,” or mystery.

So, how does the present moment rate as a sacrament? Each moment becomes a mysterious gift within which the holy and transcendent is present as grace, the loving power of God to create, renew, reconcile, and transform.

Pastoral theologian John Swinton contends that people with dementia do not lose their “sense” of time; they lose their “tense” of time. The real time is the present moment. Those who care for them must learn to be present in the moment.

Regrettably, I have never been as contemplative in my spiritual quest as I have wanted to be. But people with dementia, including my wife, are teaching me to be truly present in the moment. It’s hard work! I have to slow down, concentrate, pay attention to little movements and subtle expressions.

Celebrating the present moment is an art and craft. It is learned and honed with practice, requires disciplined attentiveness, mindfulness.  It is one of the gifts Linda is giving me now! She is teaching me the sacredness of the present moment.

We often speak of the ministry of presence. I frequently hear pastors, laity, and family members express hesitate about visiting people with dementia. “I don’t know what to say! They don’t know me when I arrive or remember when I leave. So, why visit?”

It is a devilish temptation which robs people with dementia, their pastors and family members of the sacrament of the present moment. From my experience as a caregiver and pastor, I am convinced that the feeling/experience of a momentary connection lasts far beyond the cognitive awareness.

People with dementia are hypersensitive to emotions. Linda senses moods of which I am unaware. I cannot hide my frustration or stress from her! It may be that as people with visual impairment become more sensitive to sounds, people with cognitive impairment develop added sensitivity to feelings/emotions/attitudes.

With very few exceptions, the one reality to which people with dementia respond is LOVE, even those in the severe stages. And you can’t fake it! They know if you care! They sense if you are afraid of them or uncomfortable with them. They sense if a caregiver really values them as persons or only relishes the paycheck or if a pastor or family member is only visiting out of a sense of duty.

What is the sacred within the present moment? It is LOVE! Love transforms the present moment into a sacrament!

A gentle touch, a clasp of the hand, a warm embrace, a silent presence, a  spontaneous smile, a compassionate act—these become sacraments, outward and visible signs of an inward and spiritual grace.

As we fill a moment with compassion we experience the sacrament of the present moment. After all, we experience God, the source of all love!

(Photo by Norma Smith Sessions)

Schism Is a Failure of Love and Leadership

Talk of schism in The United Methodist Church abounds, exposing an already distracted church. Contemplating split precisely when the world needs an embodied message of reconciliation is a transparent betrayal of the church’s nature and mission.

John Wesley in his sermon “On Schism” declares:

To separate ourselves from a body of living Christians, with whom we were before united, is a grievous breach of the law of love. It is the nature of love to unite us together; and the greater the love, the stricter the union. . . . It is only when our love grows cold, that we can think of separating from our brethren. And this is certainly the case with any who willingly separate from their Christian brethren. . . The pretences for separation may be innumerable, but want of love is always the real cause.[1]

As Christ’s followers, we are commanded to love one another with the same love with which Christ loves us. Love is precisely the criteria by which the world knows we are disciples: “By this everyone will know that you are my disciples, if you love one another”(John 13:15).

However we may rationalize schism as faithfulness to truth and orthodoxy, or as the cost of bold prophetic witness, the world correctly sees it as the failure to love. A church that cannot struggle together with conflicts over sexuality, interpretation of Scripture, and orthodoxy has little to say to a violently divided world.

The failure to love is also a negation of the church’s leadership. History is replete with examples of the church’s failure to provide leadership in times of polarization and division.

A historian of American religion, C. C. Goen, provides a relevant case study. His book Broken Churches, Broken Nation: Denominational Schisms and the Coming of the American Civil War chronicles denominational schisms as precursors to the violent breech in the nation.

Though he does not contend that the churches caused the split, Goen argues that the denominational divisions represented a tragic “failure of leadership.” The Methodists, Baptists, and Presbyterians opted for retreating into homogeneous ecclesial enclaves rather than engage in difficult conversations on slavery and human dignity. Attempts at persuasion gave way to legislative coercion. When legislation failed, division and violence became the attempted solutions.

Rather than leading the nation toward justice and reconciliation, the denominations simply mirrored society’s brokenness. By splitting into self-justifying enclaves of like-minded congregations, the denomination opted to mirror the brokenness in society.  The church, thereby, provided an ecclesial model and theological underpinning for a broken nation and subsequent civil war.

The United Methodist Church is once again positioned to provide leadership to a world dreadfully divided and retreating into dangerous ideological ghettos. Will we once again exhibit a failure of love and leadership?

I am finding a hopeful alternative in an unexpected place. I have the privilege of providing a pastoral presence with approximately forty people living with some form of dementia, their families, and staff who care for them. Those marginalized children of God embody reconciliation and oneness that transcends uniformity.

Every worship service is Pentecost at Bethany, the memory care facility. Although each participate is unique and the religious backgrounds include Protestant, Catholic, Jewish, and “none,” we gather as one community. Many have lost verbal abilities and comprehension. Theological and creedal abstractions elude them. Behaviors are unpredictable. Disruptions are accepted in stride.

It is not uncommon to hear a resident sing “Amazing Grace” in her native Portuguese or another in Spanish or Italian. A Jewish man joins in praying the Lord’s Prayer. People who can’t remember their own name recite Psalm 23 in unison. Some who have forgotten who Jesus sing “Jesus Loves Me” with gusto.

Much of the language is babble and incoherent. Yet, there is an understanding that transcends cognition. I asked, “How is it that you seem to understand one another?” A woman whose persistent petition during intercessory prayers is for world peace, responded: “We love one another. We communicate with the heart.”

That is leadership! That is love! Loving one another and communicating with the heart! That is the way forward for a denomination that claims as its mission “to make disciples of Jesus Christ for the transformation of the world.”

 

 

 

[1] Albert C. Outler, editor, The Works of John Wesley, Vol. 3(Nashville: Abingdon Press, 1986), p. 64.

“Why Don’t You Get on with Your Life?”

“Why don’t you get on with your life?”That was the question raised to a friend whose wife is in a memory care facility.

For six years, he has visited her daily between 1:00 and 3:00 p.m. Since the disease has taken her language, he mostly sits silently beside her, gently holding her hand. She responds with an occasional smile or a momentary twinkle in her eyes.

The casual observer assumes that she no longer knows her husband, rendering his visits meaningless. As I often hear from medical staff, family members, and friends, “They aren’t there anymore. She/he is already gone.”

If they are already gone, why continue to invest time and energy in relating to them?  Or as one daughter said about not visiting her mother, “She’s not the mother I’ve known. I want to remember her as she was.”

A pastor remarked, “They don’t recognize me when I visit or remember that I’ve been there. I have so many other things to do. They aren’t really there, so what purpose does a visit serve?”

Pat Robertson suggested in response to a caller on his television program that a husband can justifiably divorce his wife with dementia. His reasoning:  “. . . I hate Alzheimer’s. It is one of the most awful things because here is a loved one—this is the woman or man that you have loved for 20, 30, 40 years. And suddenly that person is gone. They’re gone. They are gone.“

Since the person with Alzheimer’s is “gone,” it seems permissible that “you get on with your life!”

The advice may be well intended.  Neurocognitive diseases do change people, stripping from them capacities to remember, communicate, and reason.  Personality changes are real and often dramatic. Difficult behaviors emerge.  Reciprocity vanishes or diminishes. Dependency escalates with ever-weighty demands on spouses and family.

Caregiving can be all consuming, with devastating physical and emotional consequences for the spouse.  Relentless grieving and pervasive sadness take their toll. Therefore, there is some value in suggesting that “you get on with your life.”

The advice, however, is based on a devastating myth:  Identity and worth lie in our capacity to think clearly, remember rightly, communicate plainly, and behave appropriately. It is the popular acceptance of Descartes’ dictum, “I think, therefore, I am.”

My friend responded succinctly and firmly to the suggestion that he get a life. He said simply, “This is my life!” He added that he enjoys spending time with his wife. Love is central to who he is. She may not always cognitively know him, but he knows who she has been and who she IS; and he loves her for all she has been AND for all she is! Love gives life, joy, connection to both!

Those of us who refuse to live by the myth know something very important: THEY ARE STILL THERE!  We are more than our thoughts or capacities or behaviors. We are distinct, beloved children of God, whose worth and identity are held permanently by God!

Those who take the time and energy to be attentive, to get inside the world of loved ones, to listen to the feelings behind the incoherent language, to really BE PRESENT know the person is still there!

Sometimes we see it in a faint twinkle in the eyes, or a characteristic gesture, or a fleeting smile, or a slight squeeze of the hand. When it happens, there emerges a profound joy which may last only a moment.  But the joy is real for both, and the residual effects endure longer than can be measured.

On the rare days when my friend does not arrive at the memory care facility at 1:00, his wife can be seen standing at the window looking out toward the parking lot. Mysteriously and inexplicably, she knows it’s time for her husband to come. She is STILL THERE! And he knows it!

“It is what it is!”

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“It is what it is! I’ve got it. I wish I didn’t have it, but I have to make the most of it!”

Those are the remarks of my neighbor and friend, Dale Sessions, who is in the middle stages of Alzheimer’s disease. He is among my mentors, teaching me about courage, discipleship, and ministry as he approaches his disease with characteristic courage, exuberant humor, and disarming authenticity.

Dale has seen the disease at its worst both as a professional and as a family member.  His ministry has included the pastorate as an American Baptist clergy and the chaplaincy in mental health facilities and addiction treatment centers.  Prior to retiring, he was the chaplain in a long term care facility where he provided pastoral care for elderly veterans, including those with dementia.

Dale is prophetically pastoral and pastorally prophetic.  He envisions a world of justice, compassion, reconciliation, and peace; and he has been an advocate for peace, civil rights, and economic justice. He has facilitated change in systems and individuals by helping others see new possibilities and to believe that change is possible, at both the personal and community levels.  He resists the notion of victimization and helplessness; and with compassion and humor he instills hope that things can change for the better.

His experience with Alzheimer’s has been painfully personal. Both his father and brother died from the disease after years of relentless loss and decline.  Following his father’s death and his brother’s diagnosis, Dale was acutely aware of his own risk. He thought and wrote a lot about the possibilities awaiting him.  But something deep within enabled him to accept the negative prospects, which he faced with “eyes wide open.”

Soon after symptoms began to appear, Dale courageously sought an evaluation.  Immediately upon receiving confirmation of the disease, he volunteered to be part of a clinical trial at Emory with the hope of helping others.  He willingly relinquished his driving privileges and began making plans for his diminished capacities. He and his lovingly supportive wife, Norma, moved into a retirement community.

Alzheimer’s disease is relentlessly stripping away Dale’s exceptional language and cognitive abilities. Once an avid reader and astute analyst of contemporary culture, he can no longer comprehend a simple lunch menu or remember the last news report. Once a gregarious extrovert who lit up every room he entered, Dale’s world and circle of friends have narrowed. Silence is becoming more prevalent than his jolly laughter. The twinkle in his blue eyes is giving way to that recognizable detached glare.

Dale’s dealing with his Alzheimer’s is an example of what Marilynne Robinson calls “prevenient courage.” In Gilead, she writes,

“Theologians talk about a prevenient grace that precedes grace itself and allows us to accept it. I think there must also be a prevenient courage that allows us to be brave – that is, to acknowledge that there is more beauty than our eyes can bear, that precious things have been put into our hands and to do nothing to honor them is to do great harm. And therefore, this courage allows us… to make ourselves useful. It allows us to be generous, which is another way of saying exactly the same thing.” (245-246)

What accounts for Dale’s courage in confronting his disease? What were the experiences which contributed to this “prevenient courage”?  We can assume that those whom Dale served and his experience with his father and brother helped to shape his own response. He saw those whom he served as his friends, teachers, and colleagues in ministry.

Each of us can increase our awareness of and response to those around us who serve as our teachers, preparing us for whatever lies ahead. We can affirm “It is what it is!” with courage because we are held in community. People with dementia, people with mental illness, people struggling with addictions and others whom we might think have little to offer, are part of that community!

I share Dale’s story of courage to emphasize that people with dementia have gifts to share.  They minister by their presence. I wish everyone could have witnessed the power of his presence as he and I shared Communion with residents, staff, and family members at Bethany memory care facility. And, you should have seen the courage and grace in Dale’s tear-filled eyes as he served me Communion!

“It is what it is” and it is GRACE!

[I did an interview with Dale a few months ago when his language skills were more intact. I wanted others to hear Dale’s comments and to witness his courage and discipleship. You can access the eight minute interview on YouTube: https://youtu.be/Sff-fgZ8Des.]

“I Don’t Want to be a Burden”

“I don’t want to be a burden to my family. My kids have their own lives and shouldn’t have to be burdened with me,” said the mother in the early stages of Alzheimer’s disease.

I’ve made the statement myself and heard it from Linda when she was diagnosed with Frontotemperal Dementia.  We moved near our daughters for support in our declining years; but I still struggle with the balance between support and being a burden.

“Being a burden” is high on the list of fears of older adults.  The fear is rooted in the dangerous myths of individualism and self-sufficiency.

Warren Kinghorn, a psychiatrist and theologian at Duke University, lists five societal mistakes harmful to people with dementia. One is the notion,”It’s good not to be a burden (and not to need others).”

“The remarkable thing about human life,” writes Dr. Kinghorn, “is not that humans are frequently a burden to each other, but that bearing each other’s burdens is simply what humans do. It is care and relationship, not isolation and individualism, which are normative to human life.”[i]

We come into the world as dependent creatures and the interdependency only grows more complex and multi-layered as we mature.

Therefore, bearing burdens is integral to being human! I am increasingly convinced that we have an innate need to nurture and care for others.  Bearing burdens is in our DNA! I see it daily in my relationships with residents in the memory care unit.  Many people with dementia are hypersensitive to feelings as expressed in voice tone and non-verbal communication. Many seem to intuitively know when someone is angry, frustrated, lonely, or not feeling well.

We recently found Linda in another resident’s room. She was bent over the sleeping man, gently stroking his shoulders. She was overheard saying, “I’m sorry. If you’re having a problem, I will get them to help.  It’s okay if you’re just sleeping.  I just want to make sure you’re okay. I love you.” John, about whom she was concerned, is in the severe stage of his disease and tends to be isolated from other residents.  Linda seems to sense his need for support and she has a need to provide support!

This dynamic of bearing burdens and being burdens is rooted in the very nature and mission of God.  God declared to Moses, “I have observed the misery of my people who are in Egypt; I have heard their cry on account of their taskmasters. Indeed, I know their sufferings, and I have come down to deliver them. . .” (Exodus 3:7-8). God is a burden-bearing God.

In Jesus the Christ, God “pitched tent” among us and shouldered our burdens all the way to and through the Cross and sets us free to bear one another’s burdens.

Bearing burdens is part of what it means to the body of Christ: “Bear one another’s burdens, and in this way . . . you fulfill the law of Christ” (Galatians 6:2, NRSV). Bearing one another’s burdens is an opportunity to share in Christ’s self-emptying love.  Furthermore, in bearing one another’s burdens we meet the Risen Christ and grow into his likeness.

Bearing burdens is not a burden when shared in covenant community of love. Burden-sharing is part of the Christian community’s identity and mission.

I often enter the memory care unit feeling weighted down with the burden of loss and grief, assuming that I am there to lift the burdens of those trapped in confusion and vanished memories.  When I take  time to enter the world of those who bear the burden of the disease, be they staff, residents, or family members, a mysterious connection occurs. It may be a faint smile, or sudden sparkle in the eye, or an unexpected hug, or a jolly laugh, or a friendly “hello.”  But in that simple moment of joy, those whom society considers as burdens lift my burdens.

Together we meet the One who extends this invitation: “Come to me, all you that are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light” (Matthew 11:28-30 NRSV).

 [i]Warren A.. Kinghorn, “I Am Still With You”: Dementia and the Christian Wayfarer,” Journal of Religion, Spirituality & Aging, 00:1-20, 2015.

 

 

Following a Forgotten Jesus

IMG_20160623_111041354“We’re going to talk about Jesus,” I said to a resident at Bethany as I was rounding up people for Bible study. Her quizzical stare indicated that she didn’t understand the invitation.

I tried again, “Come with me. We’re going to tell stories of Jesus.“ The puzzled gaze intensified, signifying growing agitation with my persistence.  She retorted, “I don’t know what you are talking about! I don’t know any Jesus!”

Many residents in the memory care unit have forgotten Jesus. My wife, a trained Christian educator, who has spent her life in the church, doesn’t remember who Jesus is. Few if any of the residents can comprehend and verbalize basic tenets about Jesus—Son of God,  Lord and Savior, Incarnate Word, etc.

Can one who has forgotten or never consciously knew Jesus follow him? Can people with severe cognitive impairment be Jesus’ disciples?

If salvation requires intellectual and verbal acceptance of Jesus, where does that leave those who cannot comprehend or express who Jesus is?

We are all on a continuum when it comes to intellectual understanding and verbal skills. At what point are intellectual belief and verbal accent no longer prerequisites for following Jesus? Insisting on rational belief in and verbal confession of prescribed doctrinal propositions and creedal formulas eliminates the participants in my congregation at Bethany, including my wife.

But the residents are teaching me what it means to know and follow Jesus on a level deeper than the intellect and beyond words. They know Jesus even if they can’t remember his name or recite things about him.

My wife, Linda, only occasionally knows my name and remembers little of our fifty-five years of marriage. She doesn’t know me as her husband or the father of our daughters. Still, she knows me! She loves me!

I sat quietly holding Linda’s hand. With a confused stare she asked, “Who are you?”  I replied, “I’m Kenneth, your husband.” The puzzled look intensified. “Kenneth? Who’s that?” she responded.

I interrupted the subsequent silence with an occasional “I love you!” She made no response. After a few minutes she said with tenderness and a twinkle in her eyes, “I have a wonderful man.”

“That’s great,” I remarked. “What’s his name?” was my follow up question. Bewilderment reappeared. She had no answer. “Is his name Kenneth?” I asked. “I don’t know. I can’t remember,” she said sorrowfully.

The one she experienced as a beloved person was holding her hand! Yet, she didn’t know my name or remember any facts about me or our life together. I knew, however, that she was expressing love for her forgotten husband!

Phillips Brooks and Helen Keller were friends. Several stories exist about their friendship. One incident has been shared in various versions. It seems that the eloquent preacher once described to the young Helen who Jesus is. As she “listened’ by placing her fingers on his lips, she became increasingly excited as the story of Jesus unfolded. Finally, she responded, “I knew him! I knew him! I didn’t know his name!”

In our hyper-cognitive and word-saturated world, we need to be reminded that God isn’t confined within the margins of our thoughts and language. Our intellectual formulations and affirmations about Jesus are important. Knowledge of the Jesus of the Gospels and the Creeds is significant. And verbal witness is part of Christian discipleship.

But those who have forgotten Jesus (or perhaps never cognitively knew him) can still love and follow Jesus!

Jesus shifted the margins when he declared, “Not everyone who says to me ‘Lord, Lord’ will enter the kingdom; but the one who does the will of my Father in heaven” (Matthew 7:21).

The woman who protested, “I don’t know any Jesus,” attended the Bible study session. As I was sharing the story of Jesus healing the woman bent over (Luke 13:10-17), the resident who had forgotten Jesus spontaneously began to sing, “Jesus Loves Me.”  She may have forgotten Jesus, but Jesus hasn’t forgotten her! And, she follows and loves a Jesus her mind no longer grasps!

 

 

We Are Stories, Not Symptoms

The physician’s assistant (PA) was sharing the results of an evaluation of Linda. We were seated at a table, with Linda beside me and the PA across the table.

Looking at me, the PA said coldly, “Mr. Carder, your wife is no longer the person she used to be.”

She went on to describe the symptoms of Linda’s dementia—lost memory, disorientation, confusion, agitation, inability to focus and solve problems, loss of language skills, etc.  All the while, her eyes were on me, as though Linda didn’t exist.

I noticed Linda’s growing agitation and restlessness–the glare in her eyes, the rigidity of her body, the scowl on her face.  I knew that look. The PA was about to learn something she missed in medical training.

Linda straightened in her chair, looked squarely at the PA. Slowly, firmly and deliberately, she said, “Talk– to– ME!”

Taking Linda by the hand and smiling proudly, I said to the stunned expert, “You just met Linda.”

I added, “She isn’t a disease or cluster of symptoms. She’s a person you don’t know. You only see her symptoms. I know her story.”

Regrettably, the PA reflects a prevalent lens through which people with dementia are viewed. They are seen as a medical diagnosis, a disease that robs them of identity. They’ve “lost their mind!” They aren’t fully human. They have impaired memories, so they have no identity. They can’t produce, so they have no value. They can’t reason and relate, so they don’t belong.

Here’s the point:  We are stories, not symptoms or categories or labels! People never fit neatly into the margins of any lens or label or category. Stories are always complex, multilayered, intertwined, and unfinished.  And, we don’t really know another until we know his/her story.

We try to force others within our narrow margins of perception, especially those not like us. Those outside the margins of our theology, politics, class, race, ethnicity, culture, or sexual orientation are treated as objects of our margin-justification efforts. We speak past them, about them, against them, around them, and down to them. We seldom speak to them and almost never listen to them, learn their stories.

I’m learning anew that every behavior has a story behind it. When Linda was first admitted to Bethany, she was awakened every night by another resident who kept coming into her room, turning on the light, adjusting her pillow, and speaking garbled words to her. It was frightening to Linda and disruptive to staff. The intruder’s behavior didn’t make sense. Or did it?

Mary (not her name) was a retired nurse! Her behavior now made perfectly good sense; she was working the night shift and Linda was one of her patients.

Shortly after Linda entered the memory care facility, I wrote a letter to the staff. In that letter, I shared some of her story and why she is important to me. I wanted them to see her as a person with a story worth knowing. Treatment of her changed. They came to see her as more than a category called “dementia.” They see beyond the symptoms; they see her as a person.

Here is the larger point: We don’t know another until we see him/her as part of God’s Story. God’s Story simply will not fit neatly into any of our categories-medical, religious, doctrinal, cultural, political, or otherwise!

Until we see others as part of God’s Story of Creation and Redemption, they will be but identified symptoms and labeled categories. As symptoms and categories, they can be pushed aside, devalued, scorned, defeated, and feared.

But they/we are participants in God’s unfolding Story of creation, liberation, reconciliation, restoration, and transformation. That’s our identity, our worth, our dignity, and our destiny.