Tuesday, June 2, 2015

Companioning Caregiving

Companions are important. Whether on a literal, figurative, spiritual, emotional, or you-name-it journey, companions are an essential part of good travel. Their stories influence the way we approach the voyage ahead, and help us interpret our own stories, even as we relationally reciprocate as best as we can. Companions on a journey become friends, whether for a season or a lifetime, that change our story because they are there, and the best companions, at least in my experience, create safe spaces for exploration, discovery, grief, celebration, confusion, and vulnerability. Journeying without these safe spaces of oasis can become a tiring endeavor, slowing our pace to a slow trudge, hoping solace will be just over the next hill. 

I have found myself in this situation lately, particularly in my role as caregiver. Before you get worried, it is not for lack of those who desire to help in my life, some of whom I have called and others whom I have not known how to approach. But, it's kind of like stopping at a 7-11 at midnight for a dinner heated by an overhead lamp when what you really need is a leisurely 3+ hour meal at Restaurant Eugene (if you are in Atlanta--Go there!) for food that sustains the body and the soul. Where is this calm place of restoration? Where is the companion who can hold the complexities of my life as a caregiver with tenderness and care, reflecting back to me through her own experiences the community and wisdom I need to thrive in my journey? She's been niggling at the back of my head, bothering me for weeks until I finally stopped and listened. My companion is Abigail. 

Not many people are aware that Abigail is actually a character in the Bible. You can read her story in 1 Samuel 25, but I would like to take a little liberty and tell the story myself:

Once upon a time, there was a man in Maon, whose property was in Carmel, named Nabal, which means fool. Nadal was very rich; he had three thousand sheep and a thousand goats and it was sheep-shearing time in Carmel. Nabal's wife was clever and beautiful, and her name was Abigail. But Nabal was surly and mean. Now, David, future king of Israel, heard that Nabal was shearing his sheep, so he sent ten young men with the instructions to greet Nabal in David's name and salute him: ‘Peace be to you, and peace be to your house, and peace be to all that you have. I hear that you have shearers; now your shepherds have been with us, and we did them no harm, and they missed nothing, all the time they were in Carmel. Ask your young men, and they will tell you. Therefore let my young men find favor in your sight; for we have come on a feast day. Please give whatever you have at hand to your servants and to your son David.’”

When David’s young men came to Nabal and repeated David's message, Nabal answered David’s servants, “Who is David? Who is the son of Jesse? There are many servants today who are breaking away from their masters. Shall I take my bread and my water and the meat that I have butchered for my shearers, and give it to men who come from I do not know where?” So David’s young men turned away, and came back and told him all this. In response, David said to his men, “Every man strap on his sword!” And every one of them strapped on his sword; David also strapped on his sword; and about four hundred men went up after David, while two hundred remained with the baggage.
Meanwhile, one of the young men told Abigail, Nabal’s wife about David's messengers and how Nabal shouted insults at them. Yet, according to the young man, David's men were very good to Nabal’s shepherds in the field and created a wall to them both night and day so that the shepherds never suffered harm and never missed anything when they were in the fields. The messenger reported this to Abigail for her to consider what to do because evil had been decided against Nabal and against all his house by David because of Nabal's ill-natured responses. 

Having listened to the young man, Abigail hurried and gathered a feast—two hundred loaves, two skins of wine, five sheep ready dressed, five measures of parched grain, one hundred clusters of raisins, and two hundred cakes of figs. She loaded them on donkeys and said to her young men, “Go on ahead of me; I am coming after you.” But she did not tell her husband Nabal. As she rode on the donkey and came down under cover of the mountain, David and his men came down toward her. Now David had said, “I protected all that this fellow has in the wilderness in vain, so that nothing was missed of all that belonged to him; but he has returned me evil for good. God do so to me and more if by morning I leave so much as one male of all who belong to him.”

When Abigail saw David, she hurriedly dismounted the donkey, and fell before David on her face, bowing to the ground. She fell at his feet and said, “Upon me alone be the guilt. Please let your servant speak and hear the words of your servant. Do not take seriously this ill-natured man, Nabal.  Just as his name is Nabal, and foolishness is with him. But I, your servant, did not see the young men you sent.  As the Lord lives, and as you yourself live, since the Lord has restrained you from bloodguilt and from taking vengeance with your own hand, now let your enemies and those who seek to do evil to you be like Nabal. And now let this present that your servant has brought to you be given to the young men who follow you. Please forgive the trespass of your servant; for the Lord will certainly make you a sure house, because you are fighting the battles of the Lord; and evil shall not be found in you so long as you live…When the Lord has done to you according to all the good that he has spoken concerning you, and has appointed you prince over Israel, you shall have no cause of grief, or pangs of conscience, for having shed blood without cause or for having saved himself. And when the Lord has dealt well with you, then remember your servant.”

David replied, “Blessed be the Lord, the God of Israel, who sent you to meet me today! Blessed be your good sense, and blessed be you, who have kept me today from bloodguilt and from avenging myself by my own hand!  For as surely as the Lord the God of Israel lives, who has restrained me from hurting you, unless you had hurried and come to meet me, truly by morning there would not have been left to Nabal so much as one male.” Then David received from her hand what she had brought him; he said to her, “Go up to your house in peace; see, I have heard your voice, and I have granted your petition.”

I have companioned with Abigail for some time now. When I was teenager, I had a youth minister who would often teach the more obscure stories in the Bible, and this is certainly one of those stories. If anything, Abigail is often seen as the Cinderella of the Bible, because right after this episode the text tells us that Nabal, hearing the truth of what Abigail did from her own lips, keels over and dies. Hearing of Nabal’s death, David sends some of his men to woo Abigail, and Abigail rather quickly becomes the wife of the future king of Israel. Cinderella is rescued, marries her prince and lives happily ever after…along with David’s multiple other wives. 

Since entering the world of “primary caregiver” almost seven years ago, Abigail’s companionship has become very dear to me. It’s not just her courage—which I can promise is not a one-time burst of bravery but a lifetime of choices to act in the truth. It’s not just the obvious love and trust she cultivated in her household such that young men came to her, risking the anger of their master, knowing that she would do everything in her power to protect her people. No, Abigail is my companion because at the very core of her story, I see the complexities and struggles of caregiving, and know I am not alone. I see in her the embodiment of the caregiver who stands in the middle of violence and foolishness to preserve and enable dignity and personhood for those with whom she offered and received care. We forget sometimes that Nabal is not the only enemy here—David is the one who responded to an insult with all-too-real threats to the lives of the innocent people within Nabal’s household. Death and destruction were imminent, and Abigail acted.  She didn’t just send her servants to risk their lives. She gathered a feast and went ahead of her servants, using her very body as an unexpected harbinger of peace, going out to meet David on the warpath.  She interfered between David and Nabal because the life and dignity of the members of her household mattered. This is the work of caregiving—to stand in visceral and embodied expression between Nabal and David, foolishness and violence, ignorance and prejudice, and act peace. 

I imagine, sometimes, what it might be like to sit down to tea with Abigail. To talk with her, not about this one great event of standing up to David and defying Nabal’s wishes, but of all the moments between her home and David’s feet when she thought about turning around, when she wondered if she could shoulder the burden, when she feared the consequences of speaking the truth. I want to hear of the times she felt alone and unseen in her work for life within a household run by foolishness in a world intent on violence toward the innocent. I want to hear of the times caregiving was messy, dirty, and discouraging. Because I know they are there. I know that this one event tucked away in 1 Samuel is the fruit of a life lived in daily tending to the needs she could meet, and some she probably couldn’t but tried to meet anyway. 

And so, Abigail becomes a safe place, a companion on the way because somewhere in this tea-time with Abigail, I realize God has been with us all along, both sitting at the table and dancing all around us. I am not alone any more. Abigail is my companion because, like me, she didn’t always get it right. She wasn’t perfect. But, she listened and followed when it was time to act in truth and embody peace in the face of foolishness, violence, and despair. She knew the cost and the risk of caregiving, and did it anyway. She offers a storied-wisdom that witnesses to God’s presence right in the thick of things. I am comforted not by easy answers but by true companioning with God, giving me encouragement and hope that there are others on the path with me, both physically present in this life and within the cloud of witnesses that surrounds us. 

May all of us who mutually give care and receive care in a myriad of expressions be encouraged that in companioning one another, God eternally dances in our midst. 

Monday, June 23, 2014

God, Disability, and the Men's Restroom

In seminary, we are encouraged as students to explore grandiose ideas. We theorize, hypothesize and pose grand questions (and possible answers) about God, trying to find a language which communicates our God-thoughts and God-experiences.  We study and write and dialogue (argue), sometimes spending hours trying to find a clear, concise, and even beautiful way to communicate this or that stance in a handful of sentences.  It can be grueling work, constructing a theological argument.  But, for as many times as I have measured my success against the grade I receive on an assignment, that's not really the point.  The real question is:

When the you-know-what hits the fan, does your theology work?

Last summer, my then new-found theology of disability slammed into the reality of my life as a caregiver in spectacular fashion.  After a full morning of summer school, I was sitting at work attempting to be productive with the few brain cells I had left, and I get a call.  It's Justin. He's hysterical.  I literally could not understand him because he was so panicked.  I finally figured out that he's at work and he's in the bathroom.  That's about all I needed to know. I dropped everything at work and left. I went home to get supplies, and on the way I literally caught every stop light possible.With tears running down my face, I found myself yelling at inanimate objects. I was emotionally done. Not only was I pushing my own stress back, but I was also trying to manage Justin's panic.

I'm tired of having to drop everything.  It's not fair.  No one else I know has to do this kind of thing on such a regular basis.  Why, God, why?!?!  

Then, I started playing the blame game.  If Justin ate this and not that, this wouldn't happen.  If the doctor would only give Justin something to help, this wouldn't happen.  If, if, if...  My anger welled up at all of these people who have made this hard on me.  And then, I remembered something that has come out of my own mouth again and again:

We need to stop addressing disability as an issue of health or un-health. Sometimes our bodies don't do what we want them to. This doesn't change our state before God, and it's time we stopped letting it change our level of respect and inclusion in life and in the church.

The anger eased, the panic subsided, and the work began...
Since that encounter, which honestly was nothing new then and is nothing new now, I've faced many instances where what I say about God and disability comes to the test in real life situations.  I've heard great "thinkers" think and speak very badly about disability theology to a room of disabled persons and their caregivers.  I've seen supposed leaders look down to my husband because of the wheelchair.  I've lamented as it seems we'll never get ahead, and I've laughed in order not to cry when people say stupid and ridiculous things in attempts to be "helpful."  I have wondered where God is, and I have seen God at work. In all this, even when it feels we are most alone, I do not hesitate to affirm that "God is with us, we are not alone."  This is the core of our engagement with God and disability, the basic confession from which all else comes.  This is the foundation from which I can proclaim God as "my rock and my fortress, my God in whom I trust."

You know, when I look back at last summer's adventure in the men's restroom, I will never forget what happened as I started the work of cleaning and caring.  A man came into the men's restroom, saw me going back and forth from a sink to the stall, and proceeded to go report me to the receptionist.  In less than a minute, I hear a loud and very disgruntled voice at the door, "Ma'am, don't you know this is a men's restroom? You're not supposed to be in there."  Without the careful thought that usually attends my words, out of my mouth comes in an equally loud and forceful tone, "My husband is in a wheelchair. He needs me.  I'll get us out of here as soon as I can."  It was a moment of claiming a voice at the table for me.  Granted, that's still something I have to work on, but I remember that as one of the first times I did not apologize to someone else for their misunderstanding of my situation.  Hear that again--I did not apologize to someone else because they misunderstood my (unusual) situation.  If God is with us, if God is in the midst of disability, then I do not have to apologize for the existence or seeming strangeness of my disabled family.  Confusion will happen, mistakes will be made on all sides and by all parties, and misunderstanding is inevitable.  But, we are all valued human beings made whole and good in God, disabled and nondisabled alike, and sometimes we have to let our theology claim that for us even in the strange mundanity of a men's restroom.

Sunday, June 22, 2014

I Don't Want To: A Lament

God, I don't want to have to wade through seas of human pain in order to extend a hand, to invite people to a new way.

I don't want to slog through destructive apathy to wake people up to Your work of transformation, making us into a people of God who give dignity, respect and voice to all.

I don't want to witness people breaking and feel helpless to do anything at all.

I don't want to feel like giving up because it's all too much.

I don't want to love Your way if that means I hurt when another hurts and feel crushed when another is crushed, because both happen all too often.

I don't want to cry in front of another, friend or stranger, because there's nothing else I can do.

I don't want to be silent when the silence is full of the restless pain for which we have no words.

I don't want it, not any of it.

But God, if it is Your will, I will do it.

And don't leave me alone, God, or I will falter, and I will never know the goodness of participating in Your New Creation.

Hold me up.  Strengthen me. Send your angels--heavenly and blessedly earthly--to come alongside and encourage me.

I am useless in my "I don't wants" without You, but in Your presence is courage and strength and blessed peace and rest in the face of abuse, pain, and hopelessness.

Guide me, O Thou Great Jehovah.  Amen.

Friday, January 10, 2014

When Did You Realize You Are a Caregiver?

Today I received an e-mail from the Caregiver Action Network asking caregivers to share their stories for their website, which is all about networking caregivers, caregiver advocacy, and tools for caregiving.  I usually read these e-mails and then trash them, but today one of the questions they asked really stuck with me and I decided to actually write them back.  So, here's the story about when I realized I was a family caregiver:

About 7 1/2 years ago, I started dating the man that would become my husband just two years later.  Justin was born with cerebral palsy and has been in a wheelchair since the age of 4.  From the beginning of our first date, I started participating in caregiving activities, even if that's not how I would have identified them at the time.  Before we could go to dinner, I had to learn how to operate Justin's RampVan.  When Justin ordered pasta at dinner (which we still can't believe he did!), I had to cut it up to make it easier for him to eat.  But even then, I didn't identify these actions as being something out of the ordinary.  To me, this was what getting to know Justin entailed.  

After we were engaged 11 months later, I started working with Justin's parents to learn how to take care of Justin--how to give him a shower, what to expect from doctor's appointments, Justin's medical history, etc.  Now, at this point, I was well aware that this was not the same process my other engaged and newly married friends went through in the months leading up to their marriage.  But, again, I didn't think of myself as a caregiver.  For me, this was how I learned ways to care for and love Justin.

So, when asked the question, "Do you remember the moment you realized you became a family caregiver?" I can answer with absolute certainty that I do, but it's not when people expect. After we got married, Justin and I lived in a shoebox of an apartment, not an easy thing to do with a motorized wheelchair, but we managed pretty well.  One night, as I was laying awake unable to sleep, I heard a noise outside.  It turned out to be some unidentified animal in the bushes, but that's beside the point.  It was in that moment that my whole body tensed to hear what was happening and I quickly started calculating what I was going to do if someone tried to break in, it hit me.  Our protection as a family was up to me.  If I didn't know what I was going to do, if I wasn't aware of how to handle an emergency, there wasn't a lot Justin could do without me in those situations.  

As I have reflected on this occurrence over the years, it always strikes me how strange that this was the role my dad usually played in our family, and in realizing this role fell on me in my own family, I finally saw myself as a caregiver.  I didn't receive this revelation with bitterness or upset, but it was a turning point.  Ever so slowly, I began to name the other things I did as a caregiver, recognizing them for what they were and no longer feeling like I had to hide them from people who didn't understand.  It has taken a while and I am still in process.  But this moment in the middle of the night over 5 years ago began my process of giving a name to caring for my husband.  It gave a name to all the times I struggle physically and emotionally with all that caregiving requires.  If I could have known anything as a blushing bride of 21 years, I would have wanted someone to tell me it was ok to name caregiving, to own it for what it is, good and bad.  I could have guessed at that time that caregiving would be hard, though definitely not how hard it might be.  But, the freedom that comes with owning all aspects of caregiving, with naming them for ourselves and others in love and acceptance is a gift I needed to receive and I try to give now to the very best of my ability.

Thursday, August 15, 2013

Community Finds You Wherever You Go

Justin and I have been living in intentional community for just over 8 months now.  It's been a beautiful journey full of all the things that make up beautiful journeys--bumps in the road, voluntary and involuntary time taken to stop and "smell the roses," some misdirection and turn-arounds, and great companions along the way.  Definitely a time where we have learned to embody even deeper the lesson that the stories and the journey are much more important than your destination.  And, really, what is a destination but a momentary pit stop on a much larger path?  But, I digress.

For these 8 months, every Thursday night we have had Community Meal, a time when we invite friends and neighbors to come and partake of a home-cooked meal and enjoy fellowship together.  It's a time when we practice giving and receiving hospitality, when we remember the sacred ordinary-ness of gathering around a table together.  In all this time, the only Community Meal we have missed was a Thursday night when we didn't have Community Meal because of the 4th of July.  Until tonight.  In practicing what we preach about taking Sabbath, Justin and I got away for a few days to a Bed and Breakfast out in the Texas Hill Country run by a ministry seeking to provide Sabbath time for ministers (if you are ordained clergy, speak with us--we can hook you up!).  Because of what they had available and our time window for getting away, we realized we were going to have to miss Community Meal.  But, again, practicing what we preach--Sabbath is important, as is allowing that you are not so important to any process that it can't happen without you.  So, away we went.

We have had a great time, particularly enjoying the chance to be real introverts and read all day.  I'm not kidding.  This is the best place EVER to vacation if you're an introvert because it is totally acceptable AND possible to read all day and not be disturbed.  We have had exactly the kind of vacation we needed.  We've finished books, started books, gone antique shopping, set our own schedule, talked when we wanted to talk and been silent when we wanted to be silent.

It also hasn't been lost on us that in going on vacation, we also stepped out of the rhythm of communal life.  We would have to be more intentional about doing morning prayer since it's just the two of us--which we have done--and we would miss the weekly meal that has become so vital and sacred to us.  Interestingly enough, though, there's this thing that happens when you practice something long enough--it moves from an enforced practice to an embodied presence.  I have organ pieces that I have practiced so much, they are part of my hands in a way I can't even begin to explain.

We may be away from our intentional community, but communal intentionality seems to have followed us.  

At breakfast this morning, we met a couple who do ministry with the United Methodist Church in Houston.  What started as polite conversation over breakfast, turned into a 2+ hour time of togetherness swapping stories, letting wisdom flow between us, becoming encouragers and supporters of the various ministry places we find ourselves.  Community happened.  We invited this couple and the chaplains of the B&B to dinner with us tonight, and though the couple wasn't able to come, the chaplains did.  What followed was another 2+ hour conversation in which the potential barriers of age, experience, and denomination melted away, making room for deep communion and companion-ing as we saw how similar our current life situations really are and allowed our stories to bolster and challenge one another.  Community happened.  Community happened, and it happened over food, gathered at a table.  As we gave our bodies life and joy with good sustenance, we opened ourselves to the soul-sustenance we find in community with one another.  

One of the books I've been reading on vacation is Henri Nouwen's With Burning Hearts:  A Meditation on the Eucharistic Life.  As with most things Nouwen-related, I recommend reading the whole thing.  It's worth it.  You just don't get the nuance if you only quote a small portion of it.  But, I'm going to do it anyway.  Nouwen speaks about the encounter the disciples walking the road to Emmaus have with Christ on their journey and in the breaking of bread.  This is what Nouwen says about Communion (both the practice of the Eucharist and the coming together of like minds):

Communion creates community.  Christ, living in them (the disciples), brought them together in a new way.  The Spirit of the risen Christ, which entered them through the eating of bread and drinking of the cup, not only made them recognize Christ himself but also each other as members of a new community of faith.  Communion makes us look at each other and speak to each other, not about the latest news, but about him who walked with us.  

It is both a blessing and a challenge that when you approach creating community with intentionality, there comes a time when it sneaks up on you when you least expect it.  As our eyes are opened and our hearts made ready to receive it, community becomes not a place or event, but an attitude and an awareness.  And praise be that in the goodness and wisdom of the Triune God who lives in constant divine togetherness, the simple act of breaking bread and sharing the cup--eating and drinking--can create a mundane-divine space for our communion to grow.

Friday, July 26, 2013

Love Determinedly

23 years ago today, the Americans with Disabilities Act was signed into law, giving persons with disabilities a chance at inclusion and equal opportunities for a full and purposeful life in society.

7 years ago today, I got a call from a man I greatly respected asking me to go to dinner with him...

5 years ago today, I married that man, wheelchair and all...

Today, I reflect in beautiful astonishment at God's loving mischief.

Everyone always says that the day you get married is the day you love your spouse the least.  Not that you don't love them at that time, but that you learn how love grows, changes, and deepens over your years together.  I believe this deeply, but I also think that time has a way of helping you reinterpret what you didn't already know. I love my husband passionately.  He is my best friend, soul mate, supporter, protector, comic relief, writing/teaching partner, and road trip buddy.  I am his wife, friend, confidant, sounding board, and caregiver. Everyday of the last 5 years, in some capacity or another, I have acted as his eyes, feet, hands, and strength. There are days I am called to love my husband by setting aside the needs of my own body to stand in the gap and act as a bridge between his inabilities and the flow of life. I may love Justin passionately, but the last 5 years have taught me lessons in how to love determinedly.

We all choose how we are going to love another in the face of obstacles. Some choose to love in spite of, other because of, but we choose to love in the midst of. Today, this is what I celebrate. I celebrate the sleepless nights, broken down van, tumbles and falls, hospital experiences, spilled drinks, gouged walls, extra laundry, and sore muscles. These are the Ebenezer stones marking our way in the journey of learning to love with God. These are worthy of celebration.

I remember a young 19 year old woman who accepted an invitation 7 years ago. She couldn't have understood what it means to love determinedly. But she did make a choice to give this guy on the other line a chance. She chose to see a man sitting in a wheelchair rather than a wheelchair-bound man. She took a chance that God works in mysterious and mischievous ways. She was right, and I am forever thankful.

Saturday, May 11, 2013

What if I can't?

"God, what if I can't?"

I feel like this is a question I ask quite often. I'll find myself facing a particularly arduous task or a difficult day or just the prospect of getting out of bed, and out it pops. I really sat back and took notice of this query today, and I noticed a few things I thought I'd write down.

1. This question assumes God desires for me to go somewhere, do something, or be generally active in my day. Though I may feel like I cannot do whatever the task or thing is in front of me, it assumes that my response to God is not stagnant, but a call to action or engagement with my surroundings.

2. This question shows me that one of my greatest fears is the inability to do what is asked of me. I don't know if anyone else out there is like that or not, but it hits me that "can't" is very different from "won't" or "don't." For me, to "can't" is to fail, to be weak, to be less than acceptable.

3. Despite the consistency with which I ask this question, the answer is constant. It is the panacea to my fear, the balm to my broken admittance that I'm just not capable. God says, "I Can." I Can in you, I Can through you, I Can with you. 

Whatever questions we ask, whatever internal roadblocks would make stagnant waters look better than flowing rivers of life, may we remember that God--who always is when we are not and always can when we cannot--offers the answer to our questions in God's very presence.  It is not an answer we earn or an answer which is withheld from all but the privileged few.  It is an answer freely offered and generously given to all places, all peoples, all walks of life. As our hidden places whisper of our inadequacy, may we know ourselves to be God's precious children in our very dependence on the "Can-ness" of God.