Sunday, June 16, 2013

Pointless prayer

Having a child with an incurable tumor condition, bluntly put, really sucks. It's humbling too, all the pointing and staring and comments whenever we go out in public. You see, my son is deformed from a tumor wrapped behind the left eye and bone abnormalities in his skull. Just imagine a kite unable to fly because it's weighted down. Now you have a glimpse into my toddler's looks, ones that don't measure up to society's standards of what counts as beautiful.

Before I had my son, even after his brain and skull surgery I admit, I used to approach God with a list of all the things I thought God should take care of.  Cure him, God. Heal this disease, God. Help, God. Gimme, gimme, gimme.

It's taken a lifetime, but I've finally seen the futility of turning God into a genie to appear and grant me whatever I wish. What point is there in coming to God in prayer with manipulative motives? None.

Life as is. What is so. Reality. What is the point of prayer, I ask, if prayer makes no difference?

I got a glimpse into the purpose of prayer--to commune with God--of all places where my son goes for therapy. In the waiting area, a small boy stood by the fish tank. I watched him as he struggled to speak. Despite much toil, he could only muster loud moans and shrieks.

Initially, I felt sorry for the boy, even embarrassed. To ease my discomfort, I started to pray that God would heal him and help him speak. 'But what if that never happens,' I thought I heard back. With this in mind I looked at the boy. Then, as if my eyes opened for the first time, it dawned on me how God must see him: the sacredness, the holiness, the value of this boy's life. Despite the setbacks and disabilities, he still has purpose and meaning.

I went about the rest of the day with my son, hand in hand, reveling in the joy he offers the world despite looking different.

Wednesday, December 21, 2011

Year of Plenty: A Reflection at Christmas

How often I underestimate the power of a story to bring about change.

One inspiring book has me thinking that I can do things different this time of year—that Jesus and worship and spiritual disciplines and the fruit of the Spirit can make a recognizable difference in how I live. This season I owe the anticipation of having an abundant Christmas with less to the Rev. Dr. Craig Goodwin for his book Year of Plenty (Sparkhouse Press, 2011). It features the inspiring account of one suburban family’s choice to revamp their spending habits for 365 days according to the following rules: local, used, homegrown, homemade, and products (coffee!) from Thailand.

Not about Christmas per se, the book details how their idea to consume items only from local, used, homegrown, homemade, and Thai sources germinated shortly after Christmas of 2007. Familiar post-Christmas feelings of regret and exhaustion had set in as Pastors Craig and Nancy sat in a Seattle-based Thai restaurant. Wanting things to be different, they moved their conversation to a Starbucks to begin exploring the idea of living the next year in such a way that, unbeknownst to them, would connect them with local farmers, local dairy and wheat factories, local businesses, local artisans. At the end of the 365 days they would take a family trip to Thailand.

Little did the Goodwins know at the start they would discover a universal take away of balancing consumption and stewardship of the earth. For the first time they were about to experience first hand the impact of their buying and consuming on the environment. Further, that to segregate environmental concerns to the political realm or certain religious groups is to deny humanity’s interdependence with nature.

Other invaluable lessons abounded for the Goodwin family. Besides gaining awareness of the origins of the meat, vegetables, wheat, and many other things they consumed from local sources, they learned the value of turning their suburban yard into a vegetable garden and small chicken farm. They discovered the importance of time together. Walking the girls to school on an unfamiliar path through trees, or the adventure of finding a birthday gift forty minutes away, or making a piƱata, or adjusting to one vehicle—these proved unforgettable moments of making due, building memories, bonding, imagining, thinking before spending, and relying on creativity.

The book raises some unsettling questions. Who supplies the food I buy and eat? What was life like for the animal whose meat I prepare? Why does a local farmer’s squash go to waste in a barn as supermarkets fill their bins with squash from Mexico? How connected am I to the people who make, grow and raise the things I purchase and consume? How many of us can relate to the post-Christmas let down that the Goodwins experienced?

This brings me to the propensity that I have to keep going, to over spend and over consume. I ramp up rather than slow down, curiously, during one of the holiest times of the year. I see no way around everything to do in a few short weeks—send cards, spend money, save money on great deals, bake, shop, wrap, cookie exchanges, another frustrating trip to an overcrowded post office, bizarres, clean, decorate, travel, parties, concerts...

With the rush here I wonder how many employees on Black Friday were forced to put in long hours at a time meant for loved ones and giving thanks for their daily bread. Regardless of where each of us falls on the income scale, we know that consumerism drives American culture and that it is meant for the well being of our economy. What it does to our spiritual well being, however, is an entirely different matter.

Years ago at church one Sunday morning, a woman was shocked to hear that I’d never taken part in the biggest shopping day of the year. She boasted of precisely plotted routes that led her home only when her SUV could not hold anymore stuff.
Do my memories of Black Friday count as experiences, I thought? Memories in stories? Stories of protesting employees? Stories of people camping out in frigid temperatures, of getting up in the middle of night to get the best deals? Stories of people getting pepper sprayed or trampled to death? How often a story fails to bring about change.

Something else is at stake with the rituals this time of year. Rituals that involve Christians and non-Christians alike, leaving no distinction between believers and non-believers in our culture of Christmas. I live largely unaware of the extent to which advertisements and pressures influence my holiday preparations. The total amount of money spent on advertising in the US each year reaches over 1,000 billion dollars, alluring me to acquire more, more, more. Despite this embarrassing figure comes a simple answer as to why advertising is so popular: it works. Ads tap something in the human psyche. Perhaps it's my vulnerability. If only I had this advertised thing, then I would be worth something. I would look good. I would be accepted. I would matter.

A question follows: if my rituals leading up to Christmas fail to distinguish me as a Christ-follower in the world, then what? There's a season in the life of the church that remains unparalleled in the world. It's called Advent. What makes Advent so powerful is its story—a nearly 2,000 year-old story of a baby coming to transform and leave me in a different place from where I've been. A story that offers the peace I seek. How often I underestimate the power of a story to bring about change.

Year of Plenty is a story of such transformation. It's a call to pay attention. Pay attention to what I buy. Pay attention to what I eat and consume. Pay attention to the folks who raise, grow, make, and supply these things. Goodwin’s book has also led me to reflect on cultivating a life of simplicity. It is challenging to do so, especially with the time and effort it takes to create beauty and transparency in cluttered spaces.
I’ve taken some preliminary steps, starting with experiencing this Christmas from a place of contentment rather than consumption.

In reading Year of Plenty, I have begun to reflect on how to make this Christmas less hectic and more fulfilling, less expensive and more about people than stuff.
With friends, the plan is to forego gift giving and just spend time together. While inflated snowmen and decorated faux trees began appearing in the big-box stores weeks ago, some of my family members agreed to a new ritual of drawing one name and shopping for just that one person at a cap of $25.00. It replaces the custom I grew up with, an expensive one, of buying several unnecessary or unwanted gifts for each family member. I feel guilty that the 'Chef’s Envy' vegetable-slicing tool set received last Christmas remains in the cupboard unopened. Out of guilt, I get this urge to dig it out, dust it off, and display it whenever my mom comes to visit.

Can I have what the Rev. Dr. Samuel Wells wished for in his 2010 Christmas Eve address, for people to experience Emmanuel in being with instead of doing for? Can a story really reshape my thinking and habits? If so, then Year of Plenty calls to mind parts of Scripture that speak of unforgettable gifts. Stories of God’s ‘sufficient’ grace, of being ‘fulfilled’ in God’s love, of having 'enough' for this day.

Tuesday, November 8, 2011

Avoiding junk, and other things

Habit, addiction, or ritual—and do the distinctions matter?

Between September 11 and October 10, I took on another 30-day challenge, this time to give up four things I enjoy: wine, junk food, dessert, and caffeine. During that time, friends would ask how it was going. Some shared willingly what they would or would not be able to give up if they too were to take on the same challenge. One said that she could give up wine but not coffee. Another shared that he could easily give up coffee but not his evening drinks to unwind after a long day at work. Another said she could never give up chocolate for that many days. Thirty days go fast I would say.

The challenge brought many insights, especially around my tendency to consume without thinking. I noticed how easily life can turn into “It’s in front of me, therefore I must have it.” Rarely do automatic impulse and awareness occupy the same space. On the first day of the challenge I reached for some chips at a BBQ. On occasion I caved in when company came for dinner with a nice bottle of wine. At a catered event I ate half of a cream-filled pastry for dessert before realizing it. The hardest to give up for a whole month was coffee. Headaches came on everyday for nearly three weeks. Soon into the challenge I came to grips with my habit of drinking coffee to fight tiredness and to numb headaches.

Why alcohol, junk food, sweets, and caffeine—all at once? Whether out of guilt or curiosity, this was often the question I got. I replied with being inspired by a TED speaker and by Brene Brown’s book, The Gifts of Imperfection. Brown speaks of the tendency to numb. While not everyone is an addict, she says, everybody numbs the painful or uncomfortable aspects of life in some way. Brown has inspired me to examine the ways in which I numb my fear and sadness in watching my son struggle with a tumor condition and facing difficult choices regarding his care. No parent likes the feeling of being unable to help his or her child.

To numb is really to avoid. And there is no shortage of things to avoid. I find it easier to go to the pantry or fridge than figure out where to begin with papers to file, unopened mail, bills, email, writing projects, house work, phone calls, not to mention if and when to have our son’s left eye pulled and to put in a prosthetic so he can look less deformed.

People thought it was extreme of me to give up alcohol, junk food, sweets, and caffeine for 30 days (it’s been longer for fast food as I’ve broken my custom of driving thru for a burger or taco). Others suspected that I was some addict or alcoholic, perhaps even a poor example of a Christian or no Christian at all. Before the challenge, I never thought about the controversial aspects of what I ate and drank.

As it turns out, opinions and attitudes vary greatly on what is OK to eat and drink, particularly in light of people’s religious perspectives. Guilt and shame set in for those who feel they’ve gone from moderate enjoyment to excessive dependence. Compare this to people who adhere tightly to dietary restrictions. Growing up in the Catholic and Lutheran traditions, I see nothing inherently wrong with alcohol, chips, fast food, sugar, caffeine, pork, etc. Perhaps foods and beverages are, in and of themselves, meaningless until granted power and meaning.

Back to caffeine, a key ingredient for many lives. Giving up it up meant that I drank a lot more water and milk. And as it turns out, vegetable juice provided just as much energy as coffee to get me going in the morning and to keep me energized during the day. Yet, I noticed a dip in my mood for which V8 juice had no cure. I was missing a ritual that I looked forward to each day. After putting my son down for his mid-morning nap, I would always grind beans and make some extra-bold brew topped with cream. Just the anticipation of making coffee boosted my spirits. Habit, addiction, or ritual? I wanted to know.

An insight followed shortly thereafter while at the dentist. Cleaning the stains off my teeth (far fewer because of my challenge), the tech said, “I don’t even like coffee, but I love the smell of it in my house each morning. It’s a psychological thing, getting up and making coffee.” Her comment brought to mind a recent interview I heard on end-of-life care for the elderly. The expert stressed the importance of keeping with rituals. Whatever it is that gets you up out of bed in the morning, whatever keeps you motivated, whatever brings you joy—going out for coffee, taking a walk, brewing tea or coffee, getting a doughnut—stay with it, she said. Rituals have their place as long as we are alive.

It dawned on me that I could have kept my custom of making coffee with decaffeinated beans. Instead, I gave up coffee altogether until someone had mercy and bought me some decaf Via (instant Starbucks) near the end of my challenge. To have a cup, all I had to do was nuke 8 ounces of water in the microwave, open packet, pour, stir, done.

But . . . ritual replaced by convenience just wasn’t the same.

Saturday, September 10, 2011

Contours of Fear: Experiencing, understanding, cultivating

Day 30 of my 30-day challenge--inspired by a TED talk--to share on fear. I made it.

Thank you for joining me as I explored the topic of fear these past 30 days. Committing to doing something everyday for 30 days requires discipline and sacrifice. I’ve had much less sleep, the house is a disaster, I have stacks of unopened mail, and phone calls to return. On the flip side comes the satisfaction in knowing that I pushed through.

Posting regularly has made me realize how much I struggle with fear yet how little I understand fear. To broaden my understanding, I am taking on a new 30-day challenge that I dub ‘no numbing.’ Brene Brown, in The Gifts of Imperfection, is the inspiration for this next challenge. She mentions the fact that everybody numbs in some fashion. The problem with numbing painful emotions such as fear is that you end up numbing good emotions too.

For the next 30 days, I am giving up several items that I use to numb: alcohol, junk food, sweets, and caffeine. There is nothing inherently wrong with these items. Nor do I wish to imply that people who consume these things are numbing themselves. For me, I notice a pattern in turning to these items to boost my mood or energy levels when in fact I need more rest and to allow myself to grieve. I hardly allow myself to feel sad over the fact that my two-year old son has NF1 because it's just too painful and surreal. It's easier to numb the sadness and to appear strong.

Ultimately, I choose to give up certain things for a time to see how I may learn to manage fear, and as a Christian to cultivate the Fruit of the Spirit in my daily life. Instead of alcohol, junk food, sweets, and caffeine I seek more love, joy, peace, patience, kindness, generosity, faithfulness, gentleness, and self-control (Galatians 5:22-23, NRSV).

From time to time (not every day) I will post the insights I gain from my new 30-day challenge of 'no numbing.'

Friday, September 9, 2011

Contours of Fear: Tillich on anxiety, fear, and courage

Day 29 of my 30-day challenge--inspired by a TED talk--to share on fear. Almost to the goal line.

I credit my husband, Ernesto, for today’s post. He recommended Paul Tillich’s book, The Courage To Be. Tillich draws several distinctions between

• anxiety and fear
• anxiety of death, anxiety of meaninglessness, and anxiety of condemnation
• existential (ontological) anxiety and neurotic (pathological) anxiety
• being and nonbeing
• courage to be as a part, courage to be as oneself, and courage of confidence
• individualism and personalism rooted in God

Though my book on fear is largely experiential and theological, it has philosophical and psychological elements. In reading Tillich, I’m reminded of how the ontological crises of ‘nonbeing’ and ‘meaninglessness’ that we as human beings face reveal our inherent anxiety. Tillich points out the difference between anxiety and fear, saying that anxiety drives us “to establish objects of fear. Anxiety strives to become fear, because fear can be met by courage” (39).

My experience in reading The Courage To Be was that of a sponge. For I read it through the lens of my own circumstances—ongoing fear over my son’s diagnosis of NF1, an incurable tumor condition. Tillich mentions the mind being “a permanent factory of fears” (39). I had never considered that perhaps my mind has produced all of this fear to escape the reality of what is.

In saying that, I am aware that Tillich’s book is mainly on fear of death and anxiety of nonbeing from an ontological perspective rather than on the experience of pain and suffering. With death, says Tillich, fear’s object is being killed in an accident or dying from an illness whereas anxiety stems from the inability to preserve one’s own being, especially after death (37–38).

Anxiety, like courage, is a state of being. Unlike fear that needs an object, anxiety is for the most part ‘objectless.’ Tillich says, “Fear, as opposed to anxiety has a definite object . . . which can be faced, analyzed, attacked, endured. . . . But this is not so with anxiety, because anxiety has no object, or rather, in a paradoxical phrase, its object is the negation of every object” (36). Further, anxiety “cannot be eliminated. It belongs to existence itself” (39).

My object of fear concerns my son’s NF1. An element of pain and suffering tags along, knowing full well that if my son were to die a piece of me would die. Whether I can eliminate such fear, I know not how. For certain, I struggle against defining my son by his condition and fixating on it. As I watch him play, eat, laugh, patch, run around, and grow, I cannot help but think, “You have NF1.” It’s as if his very existence is a steady reminder of his diagnosis.

I have much to learn from Tillich on courage and transcendence. These require something beyond my individualistic self. My experience of the human-divine Jesus who abides ‘in,’ ‘with,’ ‘for’ is a place to start. As is following Luther’s example: being courageous “in spite of” (161, 172).

Thursday, September 8, 2011

Contours of Fear: What do you know?

Day 28 of my 30-day challenge--inspired by a TED talk--to share on fear.

Chances are you have never heard of neurofibromatosis or NF. Perhaps you’ve seen someone with bumps on their face, head, skin, and body, bone abnormalities, loss of vision or hearing, or a droopy eyelid. The manifestations of NF are numerous, random, and scary. They also vary in each individual case. I wait for science. God waits for me.

NF affects populations worldwide and can occur in any family. In the U.S., over 100,000 Americans have NF, making it more common than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined. NF has three main types: NF1, NF2, and Schwannomatosis. Separate genes on different chromosomes result in these distinct types of NF. The most common type, NF1, involves chromosome 17. “NF1 is the most common neurological disorder caused by a single gene; occurring in one in every 3,000 children born” (“Facts & Statistics,” Children’s Tumor Foundation). I wait for science. God waits for me.

NF affects the skin, bones, and nervous system. How so? “The NF1 gene codes for a protein called neurofibromin. Normally, neurofibromin interacts with and regulates the function of another protein called Ras, which promotes cell division. The NF1 gene is very long (8,454 bases to be exact!) so mutations in the gene sequence are frequent. Mutations in the NF1 gene can produce a neurofibromin protein that is unable to properly interact with Ras and regulate its function. As a result, the Ras protein is more active than usual - causing the cell to divide more often” (“Neurofibromin Activity In A Cell,” Learn. Genetics, University of Utah).

See what happens under a virtual microscope as mutant neurofibromin proteins try to interact with the Ras protein in a cell. I wait for science. God waits for me.

Neither my husband nor I have any indicators of NF. We have no history of NF on either side. Our two-year old son, however, received a diagnosis of NF1 at age six months old. Half of NF cases are inherited from an affected parent. Half are the result of a new gene mutation or deletion. Doctors tell us that our son’s NF1 is the result of a random mutation or deletion of the NF gene on chromosome 17. As of yet, no drug therapies are available to treat our son. Surgery proves to be the only option to treat his bone dysplasia in the skull, brain tumor, and left eye. I wait for science. God waits for me.

People with NF tend to have learning disabilities and/or developmental delays. Our son Tito is delayed in motors skills (between 9–14 months behind) and has been in occupational and physical therapy for over a year. A few months ago, Tito began to fall behind in one of his strongest areas—speech. My journal entry from May 27, 2011 reads:

“Today I learned that Tito is delayed in speech and language, both receptive and expressive. He is also delayed in his eating, biting, and chewing skills. It is hard news to take. I’ve been in this state of fear and worry over my son so many times before. Dear Lord, you provide what doctors cannot: continual presence, guidance, peace. Please help my son, help me, and help Papi.”

I look at my son and think, wouldn’t it be nice for him to be on the other side of all this? I wait for science. God still waits for me.

Wednesday, September 7, 2011

Contours of Fear: Language, mental states, and the brain

Day 27 of my 30-day challenge--inspired by a TED talk--to share on fear.

Speech act theorist John R. Searle, in exploring mental states (i.e., psychological states), mentions several including belief, fear, hope, anger, and desire (Intentionality, 4). A couple of points regarding mental states are of interest. They are directed or aimed toward something:

• I have a belief or hope in . . .
• I have a desire for . . .
• I am angry at . . .
• I have a fear of . . .

Also, language derives from mental states. To demonstrate, I borrow from Searle’s taxonomy on the five primary ways in which humans use language (from Expression and Meaning):

1. Assert: ‘It is raining.’ The speaker’s corresponding mental state is a belief that it is raining.
2. Direct: ‘I order you to listen.’ The speaker’s corresponding mental state is a desire for you to listen.
3. Commit: ‘I promise to come see you tomorrow.’ The speaker’s corresponding mental state is an intent to come see you.
4. Express: ‘ I apologize for stepping on your toe.’ The speaker could have a number of corresponding mental states including remorse and guilt for stepping on your toe.
5. Declare: ‘I nominate you.’ The speaker has no corresponding mental state.
5a. Assert declare: The judge says, ‘I declare you guilty.’ The judge has a corresponding mental state of belief that you are guilty.

Knowing that language and fear are realized in the human brain makes me wonder what the connection is between the two. Experience has taught me that excessive worry impacts my ability to recall words, thereby limiting my use of language. This calls for an inquiry into the various types (modes?) of fear.

The most common type, it seems, is a general fear of the unknown or known. Based either on perception or reality, general fear pops up and disappears from moment to moment.

Next is a fear that produces a call to action. Productive fear is a motivator to do something, to change the circumstances, to make a difference.

Of interest to me is chronic fear. It is perhaps the most difficult to manage because it is possible for a host of other mental states like grief, sadness, anger, hopelessness, despair, and blame to accompany it. It affects one’s ability to focus and to formulate thoughts and sentences. It can lead to stress, long-term struggles, and health problems.

For me, it’s been two plus years since the onset of chronic fear. It came on suddenly, originating from circumstances I had no control over. I couldn’t bear the thought of something being seriously wrong with my baby. To this day it is difficult to accept the fact that my son has an incurable tumor condition.

Out of my struggle I’ve grown curious about the neurological components of the brain with respect to language and persistent fear. It seems that chronic fear intercepts certain functions in the brain. I notice a direct correlation between what I’m thinking and the intensity and longevity of my fear. The psychological impact results in feeling trapped or stuck. The bodily impact results in fatigue, overloaded senses, physical pain, and extra effort to accomplish mundane tasks.

Right before, during, and after my son’s brain/skull surgery, for instance, it took extra effort just to pump milk, go to the bathroom, shower, pick out something to eat, make a phone call, or have a conversation.

Chronic fear has its paralyzing effects. In the face of circumstances that cannot be changed, I freeze. Coming across a cougar in the mountains, a pack of wild dogs on a trail, a whale near my canoe in an inlet of water, or features of NF1 on my son’s body, I freeze.