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.

Tuesday, September 6, 2011

Contours of Fear: Timeline of the second year

Day 26 of my 30-day challenge--inspired by a TED talk--to share my experience of fear.

I had been battling fear for about a year—pretty much since the birth of my son Tito. It culminated the morning we checked Tito in for his brain/skull operation on April 13, 2010. He had just turned one. Holding my son and playing with him felt painful. I remember scattered thoughts and having difficulty breathing at a normal rate.

The team of anesthesiologists took Tito from my arms and disappeared down a hallway. Strangely my burden felt lighter. Everything rested in the hands of the surgical team now. As the day passed with Tito in surgery, my fear lessened too. The surgery would soon be behind us. And I kept reminding myself what one of the surgeons had said: the surgery will not be dangerous, just complicated.

I posted previously (day 18 of 30-day challenge) on a timeline of Tito’s first year of life and struggle with NF1. But what of the year following his major operation to repair a portion of missing skull bone and partial removal of a tumor? A second timeline reveals ongoing complications from Tito’s brain/skull surgery and NF1:

• April 13, 2010: age one year; brain/skull surgery and CT scan at Seattle Children’s
• April 20: age one year; released from hospital
• April 21: age one year; visit to ophthalmologist in hometown for left eye
• April 26: age one year; post-op checks at Seattle Children’s with craniofacial plastic surgeon and ophthalmologist
• April 30: age 13 months; visit to ophthalmologist in hometown for left eye
• May 10: age 13 months; visit to ophthalmologist in hometown for left eye
• May 17: age 13 months; post-op check at Seattle Children’s with craniofacial plastic surgeon and ophthalmologist
• May 26: age 14 months; visit to ophthalmologist in hometown for left eye
• June 7: age 14 months; surgery at Seattle Children’s to close left lids with a silicon contraption sewn to outer lids, and MRI
• June 15: age 14 months; Tito starts physical therapy for delayed motor skills
• June 24: age 14 months; visit to ophthalmologist in hometown for left eye
• July 8: age 15 months; switch Tito to a different pediatric ophthalmologist in hometown
• July 12: age 15 months; post-op check at Seattle Children’s with neurosurgeon
• August 11: age 16 months; exam by pediatrician at the Guilds’ School
• August 19: age 16 months; Tito starts physical and occupational therapies at the Guilds’ School
• August 30: age 17 months; visit to pediatric ophthalmologist in hometown; left lids infected; referred to orbital/eyelid plastic surgeon in hometown
• September 7: age 17 months; visit to orbital/eyelid plastic surgeon in hometown
• September 9: age 17 months; surgery for partial stitching shut of left lids by orbital/eyelid plastic surgeon in hometown
• September 22: age 17 months; post-op check by orbital/eyelid plastic surgeon in hometown
• September 27: age 18 months; post-op check by orbital/eyelid plastic surgeon in hometown
• October 4: age 18 months; visit to pediatric ophthalmologist and orbital/eyelid plastic surgeon in hometown
• October 19: age 18 months; visit to orbital/eyelid plastic surgeon in hometown
• October 26: age 19 months; visit to orbital/eyelid plastic surgeon in hometown
• November 9: age 19 months; visit to orbital/eyelid plastic surgeon in hometown
• November 15: age 19 months; visit to pediatric ophthalmologist in hometown
• November 29: age 20 months; visit to orbital/eyelid plastic surgeon in hometown
• December 14: age 20 months; visit to orbital/eyelid plastic surgeon in hometown
• December 28: age 21 months; surgery for left lids by orbital/eyelid plastic surgeon in hometown
• January 3, 2011: age 21 months; CT scan and visit craniofacial clinic at Seattle Children’s
• January 5: age 21 months; visit to orbital/eyelid plastic surgeon in hometown
• January 11: age 21 months; surgery for left lids by orbital/eyelid plastic surgeon in hometown
• January 19: age 21 months; visit to orbital/eyelid plastic surgeon in hometown
• February 1: age 22 months; visit to orbital/eyelid plastic surgeon in hometown
• February 3: age 22 months; visit to orbital/eyelid plastic surgeon in hometown
• February 17: age 22 months; surgery for left lids by orbital/eyelid plastic surgeon in hometown (gold weight inserted in upper lid; AlloDerm injected in lower lid)
• March 2: age 23 months; visit to orbital/eyelid plastic surgeon in hometown
• March 10: age 23 months; visit to orbital/eyelid plastic surgeon in hometown
• March 30: age 2 years; in-home vision therapy begins

The timeline reminds me of all the heroic efforts to try to heal Tito’s ulcerated left cornea. The brain/skull surgery damaged several cranial nerves. As a result, Tito has no sensation in the left eye. He neither blinks nor produces sufficient tears. The lids don't fully close. The cornea dries out after 5-10 minutes. My husband and I must constantly keep the eye moist with artificial ointments, gels, and drops. We run a humidifier most of the time in Tito’s room. Wet towels hang throughout our cozy one-story abode.

Words of wisdom from our superhero, Tito’s orbital/eyelid plastic surgeon, bring some comfort: “You cannot do anything more for Tito’s eye than you are already doing.”

I have yet to reach a place of acceptance of what is so. I still feel like there is more I could/should be doing for my son and his left eye. How can I ever know that I’ve tried everything, that there’s nothing more I can do? I keep thinking of crazy ideas: if only a pharmaceutical company could manufacture an eye ointment that functions as a temporary adhesive to seal Tito’s eyes shut except for when he’s patching, then the cornea could have adequate protection and finally heal.

Reality tells me that the scar continues to thicken and spread. It now covers over half of the left eye. The heroes have given up. But I cannot.

Monday, September 5, 2011

Contours of Fear: Spiritual dimensions

Day 25 of my 30-day challenge--inspired by a TED talk--to share on fear.

Religious persons tend to think of fear as a negative trait. If only the self could be rid of fear, then faith, love, and peace could grow. The great spiritual leader, Henri Nouwen, writes, “Love means intimacy, closeness, mutual vulnerability, and a deep sense of safety. But all of those are impossible as long as there is fear. Fear creates suspicion, distance, defensiveness, and insecurity” (The Only Necessary Thing, 167).

The Dalai Lama sees fear as “a major obstacle to our inner development . . . [and] developing compassion is one of the most effective ways of reducing fear.”

But what if we, as human beings, embrace our fears rather than hide or ignore or try to make them disappear? I think of Joy Harjo and her relationship to fear: talking to it, releasing it, telling it to come near.

I wonder about the purpose of fear. I wonder about different types of fear. It is the fear of not looking good to ourselves and to others and to God that keeps us in a cycle of unproductive fear. If the goal is really to rid the self of all fear, then the question becomes to what end.

I met a woman selling olive oil whose daughter suffers from a brain tumor. The daughter lives with seizures and the need for surgery from time to time. As the woman spoke, I recognized her tears to be the tears of a mother. At the heart of a mother’s tears is the desire never to see her child suffer. Tears reflect reality: human beings suffer, including our own children.

In moments of silence and honesty; in times of confessing my fears to God; in acknowledging my deepest fear of losing my son—I get in touch with the purpose of fear. It masks my sorrow, pain, and suffering as a mom who can do nothing to cure my son. In times like these I gain a different perspective on fear: it is not the real problem. Not wanting to cry and cry and cry is. If I were to let it all out, I’m afraid my tears would never stop.

Fear is a block. It prevents access to the helplessness I feel and the ache in my body over not wanting to see my son suffer from having NF1.

Sunday, September 4, 2011

Contours of Fear: Magical thinking or prayer?

Day 24 of my 30-day challenge--inspired by a TED talk--to share on fear.

My husband bought me a book by Joan Didion. The Year of Magical Thinking took four evenings to read. Didion writes of losing her husband suddenly to heart failure. He was sitting there one moment and slumped over the next. Layered into the story of losing her husband is her daughter’s near-death experience due to an illness and a lengthy recovery.

The book raises some thought-provoking points such as the distinction between grief and mourning, different types of grief (e.g., for a deceased loved one and for a child suffering from a chronic medical condition), triggered memories of places and people, and slipping into magical thinking. Perhaps Didion’s husband would come back if she kept his shoes right where he had left them. He never returns. For Didion, no eye is on the sparrow.

I avoided Didion’s book for several days after unwrapping it. At first, I couldn’t bring myself to read a story on death and loss and deep sorrow. It sounds bizarre, but my own magical thinking (or superstition?) kicked in. It went something like this: if I read Didion’s book, then my husband or son might die. Finally, I mustered some courage and started in on the first few pages. Didion had me. Two hours would pass before forcing myself to go to bed.

A couple of gifts Didion gave me: one, a deeper awareness of each moment I have with my husband and son. What is right now won’t last forever. Enjoy what is in the present. Second, I began to notice a fine line between magical thinking and prayer in my own circumstances. How can I know whether I’ve slipped into magical thinking in praying for my son as he battles a tumor condition called NF1?

I pray, of course, for my son’s healing. I pray for no more tumors, no more blindness, no more cafe-au-lait spots, no malignancies or scoliosis. Oddly, praying for my son arouses anxiety within me. Why do my thoughts spiral downward as I pray? Because at the heart of prayer is the acknowledgement of what is. My son has, and will always have, NF1. No amount of prayer in the world can change this fact. A missing skull bone and tumor, cafe-au-lait spots, freckling in the skin folds and iris—these are features of his NF1. Do I cross over into magical thinking in praying these not to be signs of something terrible in his future?

Prayer must be more than some formula to change God’s mind. Prayer requires a bare soul willing to express genuine concern, gratitude, desperation, and longing for help. Prayer reorients me to accept what is so with my son.

Moreover, prayer lets me know that God’s eye is on the sparrow.

Saturday, September 3, 2011

Contours of Fear: Thoughts by Kierkegaard

Day 23 of my 30-day challenge--inspired by a TED talk--to share on fear.

The Danish philosopher/theologian Soren Kierkegaard, in Practice in Christianity, reminds us that there is plenty of fear to go around. As human beings, we fear God, people, and the self. We are fearful creatures, capable of finding just about anything of which to be afraid. Kierkegaard advises that certain things are not worth the bother:

“Fear not the world, fear no poverty and misery and sickness and want and adversity and the injustice of people, their affronts, their mistreatment; fear not anything that can damage only the outer person; fear not those who are able to kill the body . . .” (76).

Kierkegaard’s words bring to mind a phrase passed on by my husband’s grandmother. Abuelita was famous for saying, “If money can fix it, then it’s not a problem.” Adopting this phrase helps to put things in proper perspective.

For Kierkegaard some things are worth fearing: “fear yourself, fear what can kill the faith and in that way kill Jesus Christ for you” (76). I wonder where fear for my son falls on the spectrum. Is it worth losing myself and my faith and my trust in God by being so afraid for him in having NF1?

Friday, September 2, 2011

Contours of Fear: Raw prayer

Day 22 of my 30-day challenge--inspired by a TED talk--to share on fear.

When I become afraid and close in on myself, it is comforting to think that I am not alone, that someone cares. In sharing with a friend that I’ve been waiting for results from a recent CT scan, she indicated that stress can do all sorts of strange things. She also said that I am one to keep everything inside.

It’s rare for me to break down in front of others. It’s easier to go into report mode with emotions kept undercover, especially when it comes to sharing about my son.

Perhaps this is why I turn to prayer. When my mind is preoccupied with things that seem too trivial, burdensome, or personal to tell others, it is only with God that I pour out my whole soul. I feel like God truly understands. With God, I never go into report mode. God gets the raw me.

Written prayers right after my son’s brain/skull surgery at age one due to complications of having NF1:

Lord, the burdens we feel cannot be put into words. Our needs are great. Seattle Children’s is a place of sorrow, yet a place of healing. A true source of comfort, help, and healing. Our son is not the only one who needs intervention. Family members and caregivers wait and hear tough news and hear good news and need to grieve and need space to cry and need to be spacey.

Lord, my feet hurt from standing. My body aches from sitting. To be in a hospital all day is exhausting. We all are having long days. It is easy to lose patience.

Lord, it is day four in ICU with our son. Here I sit rocking and nursing him for the first time since his surgery. I don’t want to move him in case he has pain. His left eye remains immobile and the pupil fixed, though I think he can still see out of it. He reached for my water, then the ointment, then my finger.

Lord, I wish there was some prayer I could say. If only I had the right words to pray so that my son could be healed. Teach me to pray.

Lord, one week ago tonight my son could see out of both eyes. Now one eye is almost blind. It cannot move. The lids cannot blink and close. How shall I pray now, Lord? How do I know that you hear me?

Lord, I just met a family with a daughter who has the same condition as my son. To hear of all the tumors, chemotherapy, pigmented spots on the skin, and craniofacial surgeries makes me scared. I fear the worst for my son that he will need a special school for socializing. Please stop the spread of his tumors. Please give him a break from all the medical attention. Help my son. Help his desperate mother. Amen.

Thursday, September 1, 2011

Contours of Fear: Idiot origins

Day 21 of my 30-day challenge--inspired by a TED talk--to share on fear.

“To keep death before one’s eyes daily” ~The Holy Rule of St. Benedict

“Sin caused your little boy’s condition, but Jesus has it taken care of. Even if your son dies you’ll get to see him again. It’s great stuff.” ~A Professing Christian

Comparing the two statements, there is something wise about the first. The second, spoken to me earlier in the day by a contractor who buys paint from my father, is heartless. Mr. Collins spoke enthusiastically. I listened, nodded, excused myself, and returned to my duty of sending out the monthly statements.

Why do some Christians feel like they have to have all of life’s unanswerable questions and unbearable moments figured out? This sort of spiritualized thinking pisses me off. I too am a Christian but have never thought that sin caused my son’s medical battles. I must be out of God’s loop. If I had true grit I would have said, “Actually, Mr. Collins, sin didn’t cause my son’s NF1. A copying error of the NF gene on chromosome 17 did you idiot.”

I love the word ‘idiot.’ It comes from the Greek word idios. In the New Testament it is used at times to refer to Jesus getting away by himself, all alone, idios. Other connotations of idios include peculiar, strange, odd. How idios I find your comment about a young innocent child, my son, Mr. Collins.

“To keep death before one’s eyes daily.” Now such a statement I find challenging. It arouses my fear of dying. What if something happens to me and I’m not around to raise my son? What will happen to him? Who will be there to give him the care he needs? The cycle is vicious: In times of stress I think of these questions—questions that cause me stress. Benedict’s rule reminds me that I need to take care of myself so I can provide my son with the care he needs.

At Seattle Children’s, I like to read the literature available through the chaplaincy program. At first, the literature struck me as idios. I was hoping for some tips on how to help my son as he lay in ICU. Instead, the material was mostly on caring for the caregiver. For good reason: caregivers tend to get sick or deathly ill if all they do is care for a sick loved one and stop caring for themselves.

Wednesday, August 31, 2011

Contours of Fear: Finding the humor

Day 20 of my 30-day challenge--inspired by a TED talk--to share my thoughts on fear.

I stalled getting my two-year old out of his crib this morning to avoid yet another battle at the changing table. Conflict is the latest ritual in place of singing and playing a variation of peek-a-boo called poke-a-Tito (laugh, laugh, laugh) followed by poke-a-mama (laugh some more). Oh the joys of motherhood to see my reflection in my son’s smile. Nothing compares.

I can’t blame Tito. He has an excellent memory, which is why he resists laying down, being changed, and me reaching for the bottle of cherry flavored Maalox (cannot find non-flavored anywhere). Anti-acid designed for heartburn makes for the barrier of choice on the skin around my son’s right eye. It prevents the skin from ripping and bruising when I take off his eye patch two hours later. Otherwise he gets quite the shiner.

As the “no no no” begins I turn laying him back into a game by counting to three, though not in a threatening way like “lay down now or else.” Once on his back next comes the arching and leg kicks. My tricks of offering cars, balls, teddy grahams fail. So I reach for the tape. It works every time. He loves to play with tape, but this morning he does something unexpected with it. After sticking it on his hands and fingers and my arm, he places it strategically on his right eyelids and starts the countdown: 10, 9, 8, 7, 6, 5, 4, 3, 2, 1. Repeat.

I smile. He looks at me and with pride says, “Yeah for Tito.” He gets the concept even if it is the wrong eye. The medical tape goes on the upper and lower left lids to keep that eye open during patching sessions. A combination of the left lids sewn partially shut, a gold weight in the upper lid, and pigskin in the lower lid forces the lids together.

Tito lacks sensation in the left eye and neither blinks nor produces tears properly ever since a brain/skull surgery for his NF1 back in April 2010. By forcing the lids together (five surgeries later), except while patching four hours a day, the left eye stays moist from all the artificial drops and gels and ointments that go into it.

With a change of clothes and diaper, with Maalox on the skin, with tape on the left lids, we start a new day. Once off the changing station I set the timer on the microwave for five minutes. Tito gets to play until the timer beeps. Then it is time to put on the patch of his choice: car, ball, or lizard pattern.

Beep, beep, beep. Now the patch goes on. With the right eye covered I reset the timer, this time for two hours. Before the timer goes off, Tito will get to count down, with much enthusiasm I might say, the final minute: 60, 59, 58, 57 . . . knowing that after naptime the ritual will start all over.

Tuesday, August 30, 2011

Contours of Fear: After the dreaded day

Day 19 of my 30-day challenge--inspired by a TED talk--to share my thoughts on fear.

In a journal, I have written letters and drawn pictures for my son over the course of his short life. The entries have grown fewer and far between. Writing to my son evokes difficult emotions that seem unbearable. Avoidance becomes another way to numb or deny reality. Since April 13, 2010, the day of Tito’s surgery at Seattle Children’s Hospital, I have made only three entries. Before the big day, I count twenty-three.

I found courage to write to Tito on the day of his surgery:

My dearest son,

Today is your major operation. I feel terrible that you have to suffer because of your NF1. Your surgery of seven hours is to remove a tumor from behind the left eye. Then the surgeons need to repair a portion of your skull due to missing bone. They need to create a barrier between your brain and eye socket. The anesthesiologists took you from my arms at 8:00 am. Then you were gone. I didn’t see you until about 5:00 pm after the operation, CT, and post-op care. All day I could only imagine what was being done to you. I dreaded the thought of them cutting your head open from ear to ear. I dreaded the thought of you bleeding and needing a blood transfusion. I dreaded not recognizing your sweet face afterwards. If only mama had an ounce of your bravery, innocence, and love for life.

I am here for you,
Mama

Two days later, April 15, 2010, I started a different journal. I couldn’t write to my son. A strange sensation came over me. It felt as though Tito was disappearing from my life as quickly as he entered it. All I could do was hope that God was real. So I found solace in writing down my prayers.

April 15, 2010 entry:

Lord, I cannot hold my son. I want to cry but have no tears. When tears finally come, I push them back. I grieve. My son is alive, yet I am afraid. I miss his scar free body. I miss the hair on his head. I imagine days without fear. I try to enjoy the sunshine in Seattle and the flowers and the trees. Then my thoughts return to my son in his hospital room. Who am I to enjoy a moment as he lays in ICU? Like trapped animals we both are. All I can say is “God, help.”

Monday, August 29, 2011

Contours of Fear: Timeline of the first year

Day 18 of my 30-day challenge--inspired by a TED talk--to share my thoughts on fear.

The day fear took over, I, a new mother, became obsessed with watching the brown spots forming on my 7 week-old baby’s skin. A year of fear followed.

• March 27, 2009: Tito born with no issues
• April 10: two weeks old; the left eye never closes completely
• May 17: seven weeks old: 7 cafe-au-lait spots appear on his legs and stomach
• May 28: two months old; 14 cafe-au-lait spots noted
• June 17: almost three months old; exam by a geneticist with no clinical
diagnosis of neurofibromatosis given
• July 7: three months old; freckling detected in the right iris
• August 4: four months old; the left eye bulges out of the face; MRI ordered
• August 7: four months old; MRI of head, face, and orbits
• September 3: five months old; exam by a neurosurgeon who orders a CT scan and
then drops Tito’s case
• September 16: five months old; CT scan of head, face, and orbits
• September 30: six months old; exam by neuro-oncologist at Seattle Children’s
Hospital; numerous cafe-au-lait spots cover Tito’s torso, buttocks, and legs
• October 1: six months old: exam by a new ophthalmologist at Seattle Children’s
for protruding left eye
• October 7: six months old: referral made to the craniofacial team at Seattle
Children’s
• November 2: seven months old: exam by craniofacial plastic surgeon at Seattle
Children’s; left wing of skull bone is missing; diagnosis of neurofibromatosis
type 1 (NF1) given; brain and skull surgery discussed
• December 1: eight months old; vision deteriorating in the left eye; patching
sessions for 30 minutes per day begin
• January 4, 2010: nine months old; CT scan of head, face, and orbits
• February 9: ten months old; MRI of spine, and exam by a geneticist at Seattle
Children’s
• March 8: eleven months old; patching sessions bumped up to 3 hours per day
• April 13: one year old; brain/skull surgery and MRI at Seattle Children’s

In the pandemonium of uncertainty and testing and second opinions and referrals, I wrote letters to my son. Here’s a journal entry dated July 27, 2009:

My son, Tito, my love,

You are four months old today! So much has happened up to this point. Now you are sitting up in your Bumbo seat. You can pull your toy tiger on your own to get it to play music. You are squealing, trying to talk, and nearly laughing. You protest when I start talking to someone else while nursing you. I’m sorry for not writing to you in several weeks. On July 7th, you went to Dr. Jeffrey Snow, a pediatric ophthalmologist. We were there 2 ½ hours. You cried most of the time. It appears that you have three spots on your right iris called iris nevi. You also have many cafe-au-lait spots on your body. Papi and I worry that you have NF1. No matter what, you are loved beyond measure. We will do whatever we can to give you the best life. NF1 or neurofibromatosis is caused by a gene mutation on chromosome 17. Prayers cover you that you will have a mild form.

I love you very much,
Mama

Sunday, August 28, 2011

Contours of Fear: The oooh factor

Day 17 of my 30-day challenge--inspired by a TED talk--to share my thoughts on fear.

Today’s post revisits a theme covered previously on people’s reactions to my two-year old son, Tito, when out in public.

My husband, Ernesto, took Tito to the park. All the kids were pointing Tito out to one another. It’s not as if they were being cruel or teasing. But at times the “Oooh, what happened?” statements are just as damaging. We contend with this each time we take Tito places. He will have to deal with it directly as he gets older. For now he is too young to know what is going on, that he looks different.

After one of Tito’s eye surgeries—the fifth one I think but have lost track; the one where the orbital plastic surgeon inserted a gold weight into Tito’s upper left eyelid and injected AlloDerm (pig skin) into the lower eye lid to close the lids—it looked like Tito got socked in the eye with a hard ball. For days when he saw himself in the mirror after bath time, he pointed to his bloody and swollen eye and said, “Owie.” He poked and patted it as if to say, “It’s ok.”

Worse was the reaction of a four year-old boy upon seeing Tito after this particular surgery. Ernesto and I, with volunteers from different churches, serve dinner once a month at our local Ronald McDonald House. The young boy asked me whether Tito got the bonk on his eye from me hitting him, by “giving him a woopin’.” I said no and that Tito had to have surgery. The boy proceeded to tell me that he gets a woopin’ at home on his bottom. The only thing I could think of to say was, “You do?” As the boy’s mother sat zoned out in front of a TV with a man who was not the boy’s father, I wondered how life must be for him.

Since Tito is at risk for being teased and quizzed nonstop once he starts school for looking out of the norm; since he has had several trips to the OR for his left eye; since none of the surgeries have provided a solution to heal the ulcerated cornea; since we have to tape open the left eyelids and put in artificial moisture drops or gel every 10-15 minutes into the left eye while patching his good eye, two questions posed by a specialist new to our son’s case are important to ask: “How much can you put a child through?” and “How much effort should be made to save an eye?”

These are unanswerable questions for me as Tito’s mom. So I will go on answering the one question that can be answered.

“Oooh, what happened?”

Saturday, August 27, 2011

Contours of Fear: Spiritual discipline

Day 16 of my 30-day challenge--inspired by a TED talk--to share my insights on fear.

At times, I’m told that worrying changes nothing. It cannot change the facts. It cannot change what will happen. And yet I cannot help but think that the course of my son’s life will be like that of others who suffer from NF1: benign tumors turning malignant, blindness, disfigurement, multiple surgeries, or death.

Fear keeps me from enjoying the good things happening in my son’s life—his remarkable healing after a major brain and skull surgery in April of 2010; improved motor skills and speech; happiness for life; love for people; some vision worth salvaging in the left eye; the generosity of friends, family, and strangers—so rising above fear becomes a necessity even if for a moment.

Transcending fear can be thought of as a spiritual exercise. Drawing close to God and relying on God depend greatly on letting go of self-reliance. It begins with honesty. Admitting and recognizing the extent to which fear dominates my thoughts takes effort and discipline. Throughout Scripture comes the command: “do not be afraid.” With so many ‘fear nots’ in the Bible, these remind me of just how fearful I am.

When fear sets in I notice the absence of peace, joy, patience—pretty much all of the ‘fruit of the Spirit’ mentioned in Galatians 5:22-23. Another benefit in letting go of fear is the chance to experience 1) emotions that get buried like sorrow, anger, and happiness, and 2) remarkable traits like generosity, forbearance, and self-control. A good life depends on these.

Friday, August 26, 2011

Contours of Fear: What doesn't work

Day 15 of my 30-day challenge to share my thoughts on fear. I’m halfway through, and it’s true what the TED speaker said about not getting much sleep.

Yesterday I posted on what helps in working through my fear in the day-to-day challenges with respect to my son’s tumor condition. Now I speak to what doesn’t work.

To start, I notice the paralyzing effects of fear. It remains unclear to me how much power fear has over me or how much power I give it. Either way, fear gets in the way of having a good day. The inability to focus, to think clearly, to accomplish a task, to make decisions, to form thoughts, to recall words, not wanting to do anything or go on—these features of fear resemble those of grief.

Not long after Tito’s brain and skull surgery, my mom took me on an outing without the baby to pick out some landscaping items for our yard. I was excited to go. Then once at the nursery I lacked the energy to walk around. I was unable to choose which flowers, plants, and trellis I wanted. She took me to several nurseries and the same indecisiveness set in. I returned home with next to nothing.

The experience of being unable to snap myself out of it makes for high levels of frustration. The temptation to numb arises. Brene Brown distinguishes addiction from numbing in The Gifts of Imperfection (see her TED talk on vulnerability). Some people suffer from addiction, but everybody numbs with something. My favorites include wine, chocolate, coffee, maple bars, perfectionism, never stopping, and a compulsion to clean. Numbing has pay offs and costs. The pay off, says Brown, is that numbing “takes the edge off” of experiencing difficult (and good!) emotions (The Gifts, 69-74).

Every pay off come with a cost. Numbing is a short-term solution and can quickly turn into a habit. But more is at stake, as Brown gets the reader to understand: it is only through experiencing painful emotions like shame, fear, and vulnerability that you gain access to a rich life of courage, compassion, and connection.

Aside from numbing, here are a few other things that don’t work:

  • trying to look like I have it all together by going into report mode
  • withdrawal and isolation (the opposite of solitude and spending time in God’s presence)
  • looking to other people to alleviate my fear by sharing with those who want to fix it
  • the avoidance of reading and learning about my son’s diagnosis of NF1
  • being silenced by physicians who minimize the seriousness of Tito’s condition by saying that it’s nothing to worry about, that the web offers only horror stories of NF1, and who drop Tito’s case without communication
  • resisting sleep and rest

So numbing and other strategies—these work for a brief time but postpone the hard work of accepting and working through my fear. Sharing, having a good cry, being honest—these are cathartic, and a good place to begin.

Thursday, August 25, 2011

Contours of Fear: What works

Day 14 of my 30-day challenge--inspired by a TED talk--to share my insights on fear.

When confronted with chronic, relentless fear I discover what works and what doesn’t work to cope. The temptation is to numb. I’ll say more on this for tomorrow’s post. In short, numbing simply cannot provide the stamina needed for the journey.

Several activities and bits of wisdom ease my burden of caring for a child with special needs. First, what others say makes a difference. As human beings, I think we easily recollect comments that hurt and comments that inspire. Both make an impact. Here are some things people have said that encourage me in the daily grind of patching, medical appointments, surgeries, therapies, watching for anything out of the ordinary with my son, and dealing with insurance and billing departments (it’s a toss which is worse).

When people say that:

  • Tito is so happy
  • you can tell he’s loved
  • his smile makes your day
  • my husband and I are doing all we can
  • there’s nothing more we should be doing
  • they’ve been through it

Things that work for me in managing fear include:

  • having the support of a loving community such as our church
  • reading up on my son’s condition
  • doctors telling me straight up what is going on without minimizing it
  • getting into action as Tito’s advocate
  • taking Tito wherever he needs to go, however inconvenient, for the best medical intervention

But the one thing—the chief thing—that I keep coming back to is the importance of cultivating my own interests like academic endeavors, preaching at church, exercise, art, working on another book, gardening, getting together with friends, picking huckleberries . . .

I cannot emphasize enough the satisfaction of keeping with the things I am passionate about. It does feel awkward to spend time on my own pursuits. But I’m convinced that doing so makes me a better person and mom. To make my son’s incurable tumor condition the whole of life is the avoidance of life itself.

Wednesday, August 24, 2011

Contours of Fear: Redirecting

Day 13 of my 30-day challenge--inspired by a TED talk--to write on fear.

Worrying more about how I love and raise my son rather than what might happen to him, this is the challenge.

If I cannot completely rid myself of fear, then it must be possible to redirect it. Shifting my worry to that which I can do something about is empowering. I can’t predict my son’s future, though I am often asked about his prognosis. There’s no way of knowing. We take it day by day. I worry, of course, that he may have a serious or fatal form of NF1.

The benefits of redirecting fear outweigh the obstacles to do so. Am I going to get to the end of all these years after my son reaches adulthood and say, did I worry too much then? What did fear get me? Did I push Tito too hard to work on coordination and balance, motor skills, feeding skills, verbal skills, patching, and seeing? Or did I slow down to enjoy the day-to-day moments while Tito was young? Such questions become particularly poignant in light of how fast time goes.

Tuesday, August 23, 2011

Contours of Fear: Beyond sympathetic love

Day 12 of my 30-day challenge--inspired by a TED talk--to write on fear.

Raising a child with a chronic medical condition demands of me a different kind of love. As one friend put it, “I don’t want my daughter to grow up experiencing only sympathetic love.” My friend, whose daughter has Turner syndrome, makes an excellent point that causes me to wonder about the different types of love and how I love my son. Perhaps fear warps unconditional love into sympathetic love, a type of conditional love based on circumstances.

Sympathy means “to feel sorry for,” “to pity,” or “to express understanding.” A separate word, compassion, literally means “with suffering.” Compassion extends far beyond feelings of pity or sorrow for another. Compassion moves a person to engage in relationship. It is being with rather than doing for. For more on the distinction between ‘with’ and ‘for,’ listen to “The Most Important Word” (19 minutes into the video), a Christmas Eve sermon by the Rev. Dr. Samuel Wells delivered at Duke University Chapel.

I recognize the worry that preoccupies my friend. On top of managing her daughter’s health issues, my friend struggles to find answers to questions of love fueled by uncertainty of her daughter’s quality of life. Uncertainty arouses fear. Fear in turn masks vulnerability. But as Brene Brown shares in The Gifts of Imperfection, the path to wholehearted living and love emerges by being authentic and vulnerable. These go against my tendency to pretend, to minimize, to act strong

Mine is a convincing act. People tell me how strong I am. I say, “I’m not strong and I’m not weak. It’s just what I do. I am Tito’s voice.” Much of my time is spent doing for, doing what needs to be done for my son. I have much to learn on how to be with him. For when fearful thoughts set in, I have to fight the urge of putting distance between my son and me.

Monday, August 22, 2011

Contours of Fear: Strawberries from grandpa's garden

Day 11 of my 30-day challenge--inspired by a TED talk--to write on fear.


The ability to see is one of those fascinating and complex systems in the human body, one taken mostly for granted.


My blog entry dated January 2, 2010 after a trip to the ophthalmologist reads: “We have to patch the good eye now every day until the baby's surgery in the spring. This is to prevent vision loss. Thank goodness the patching sessions are only 30 minutes. It is nearly impossible to keep the baby from rubbing the eye patches off. The baby can no longer look up with the left eye.”


Ophthalmologists can check for vision loss in infants. An effective method involves teller acuity cards. Holding Tito on my lap, the vision tech covers one of his eyes at a time and holds up a series of rectangular boards. Each board contains a black-and-white pattern of stripes or checkers at one end. The opposite end is blank. The tech hides behind a peephole at the center of the board and looks to see whether the infant can locate the pattern.


Amblyopia, or lazy eye, has many causes. It is a major source of vision loss in children. Tito’s left eye began protruding out of the face when he was 4 months old, causing the brain to shut off vision to that eye. We had yet to learn that Tito had a tumor behind the eye that originated in the cavernous sinus and that he was missing a wing of skull bone designed to keep the brain from entering the eye socket. When Tito was almost 9 months old, an ophthalmologist caught the vision impairment. The daily grind of patching Tito began, and it continues to this day. He’s now up to 4 hours of patching a day.


Some days are tough. We’ve retrained Tito to patch without arm splints (no no's), though he fights the temptation to tear the patch off. Constant redirecting, keeping his hands busy with toys or food, singing, playing, letting him enjoy a sucker or cookie--these are some tricks that help us get through the patching sessions.


The uncertainty of how much Tito sees out of the left eye preoccupies me. Whether patching him hour upon hour is restoring any vision remains to be seen. For now, it is part of our routine. Wake up in the morning, patch. Wake up from his afternoon nap, patch. Every single day. Put eye drops or gel in the left eye every 10-15 minutes while he’s patched so that the eye stays moist.


Patching Tito the other day, I held up a strawberry from my dad’s garden in front of his left eye. Tito leaned forward in his high chair, gazed earnestly in the direction of the strawberry for several moments, and then snatched it from my hand. I knew that he was happy. And I was happy too.

Sunday, August 21, 2011

Contours of Fear: Innate or learned?

Day 10 of my 30-day challenge--inspired by a TED talk--to write on fear.

Thinking of my early childhood and now watching my two-year old, I’ve grown curious about the neurobiological components of fear, specifically the extent to which fear is innate or learned.

My first memory of being afraid was when a large mean dog chased my two siblings and me in our front yard. My sister was five, I was four, and my brother was three. I recall us kids running frantically all over the place, including around the Avon lady’s car in the driveway, as the stray hungry German Shepherd pursued us. We screamed and cried. The dog growled and snarled. My mother flew out the front door yelling, which in turn made the dog run off. It too had a fear response. After that we came inside and did not want to leave our mother’s side. It took awhile for her to console us. Over thirty years later, I remember the details of that scary episode.

It turns out that memory and fear go hand in hand (“Stathmin, a Gene Enriched in the Amygdala, Controls Both Learned and Innate Fear,” 697, 705). Memory of adverse circumstances is essential for survival, thus memories of fearful situations tend to remain throughout an animal’s lifetime (“Stathmin,” 697). Researchers distinguish between ‘acquired’ or conditioned fear learned through adverse experiences and ‘innate’ or unconditioned fear as part of a creature’s genetic makeup. Scientists also note that the amygdala, an almond-shape collection of neurons in the brain, plays a role in regulating emotions and managing fear (“The Structural and Functional Connectivity of the Amygdala: From Normal Emotion to Pathological Anxiety”). Researchers continue to work on the complexities associated with the fear spectrum that originates in mammalian brains.

My son, Tito, began recently to exhibit acquired or learned fear. The other day I had to take him to the eye doctor who has attempted to protect the left cornea with several different contact lenses. The problem is that all the lenses have fallen out. I situated Tito on the chair by giving him a bribe in each hand. With a chocolate stick in the right and a sucker in the left, Tito was content to recline back on the chair, waiting for the doctor to insert another contact lens. Without warning, the doctor decided to move up the chair mechanically. Whenever Tito lays down now, whenever I lean him back, whenever I take him back to the doctor, he resists by reminding me of 'the scary chair.'

Tito's been to ophthalmologists since he was 4 months old. Up to this point, he has shown little or no acquired fear of going. That has changed. What hasn't changed is that Tito still shows little to no signs of innate fear such as fear of heights, of strangers, of falling, of water, of getting hurt. He'll disappear through an unknown door or down a hallway, climb up anything, and bolt as soon as I set him down.

I wonder if acquired fear kicks in sooner than innate fear, and whether innate fear has to be mirrored somewhat to young children by their parents or caregivers.


Saturday, August 20, 2011

Contours of Fear: A question to explore

Day 9 of my 30-day challenge--inspired by a TED talk--to post on fear.

A question worth considering: to what extent is fear innate and/or learned?

I will offer some reflections on this question on Day 10. I'm afraid that on this day I'm sick and in bed.

Friday, August 19, 2011

Contours of Fear: When worst fears come true

Day 8 of my 30-day challenge—inspired by a TED talk—to share something on fear.

Any parent will tell you that fear is part of parenting. Parents worry that something bad will happen to their kids, whether it be teased, bullied, get hurt, have an accident, start hanging with the wrong crowd, get into substance abuse, run away, get sick, die, etc. The list of worries shrinks and grows depending on the circumstances. One parent’s worst fear may differ from another parent’s worst fear. Still, it takes courage to be a parent.

What if your worst fear as a parent becomes a reality? How do you cope with chronic fear and stress? How do you keep going? How do you handle the challenges? How do you tap into courage, forbearance, patience, love, peace, and endurance in a time of shock and grief?

One time my husband and I were waiting in the family lounge at Seattle Children’s Hospital before checking in for an appointment. Two women were playing a game at a nearby table. We took turns chasing our toddler around as he explored the new environment. He kept going up to one of the women seeking her attention. She would look at him and say something to him. He in turn would squeal. As the woman and Tito played their little game, the conversation naturally turned to why we were there. When it was her turn to share, she reported in a matter-of-fact fashion (a way of keeping emotional distance from the pain—a trick I too relied on) that her 16 year-old daughter just had a liver transplant a week prior. Within the last two days she had developed an infection. Now she lay in ICU unable to speak or recognize anyone with her future in limbo moment to moment. I could tell that it was helpful for this mother to talk about her circumstances.

As the mother spoke, Tito kept saying “mama, mama, mama.” Then she said, “Just two weeks ago my daughter was perfectly healthy and playing sports. Then out of nowhere she started feeling sick and fatigued. All I want now is to hear is her say ‘mom’ again.”

I don’t know how things unfolded with this girl and her family. I could find out by visiting the chapel on the first floor of the Giraffe wing of the hospital. The chapel is where I went when Tito lay in ICU months prior. In the chapel is a book, and in this book is written the name, birth date, and date of death of every single child who has passed away at Seattle Children’s.

At a children’s hospital you see parents and caregivers in the mode of doing whatever they can for their children despite feeling alone and afraid. We actually enjoy our regular trips to Seattle Children’s Hospital because it feels like one large connected and supportive family. Every parent or caregiver shares certain things in common there: a child in need of medical intervention, and fear.

Thursday, August 18, 2011

Contours of Fear: Managing the voices

Day 7 of my 30-day challenge to write on fear.

When overcome with fear for my child, it is difficult to discern all of the voices. Voices of doctors; voices of friends; voices of relatives; voices of strangers; voices in my head. The nice thing about people’s input is that it stems from genuine concern, good will, best intentions.

In the beginning, doctors said that they could not help because they had no idea what was going on inside my baby’s brain and skull. People quizzed me on what I did during the pregnancy that may have caused my son’s disorder. Others said that everything would be fine, not to worry. Friends and strangers shared stories of people who became blind or deaf or who died from complications of my son’s condition. Some insisted that my husband’s blindness had some correlation to our son’s nonfunctional left eye.

Our son presented with the first signs of NF1 at age 7 weeks. A clinical diagnosis was finally given when he turned 6 months old. Along the way, the most fascinating input came from those who spoke for God: that God knew we could handle a sick child; that God needs babies in heaven too; that God demands faith like Abraham who was willing to offer his only son Isaac on the altar. God’s voice became indistinguishable in the mix.

On the day of my son’s big surgery it occurred to me that God is not confined to words or opinions. Beyond language, in silence, is where I experienced God as sheer presence. My fear of this day evaporated.

Wednesday, August 17, 2011

Contours of Fear: Being in action

Day 6 of my 30-day challenge to write on fear.

At last I felt ready, over a year later, to dig out the large packet of information on NF1 from the geneticist. I experienced fear and denial in the same space. They fed off one another.

Up til then, the packet lay buried under a pile of papers in the den. Now it resides at my bedside as a visual reminder that I ought to read all the pamphlets and articles. Some nights I have the courage to open up the packet, though I never like what there is to read in there. Does my son have a serious form of NF1? If so, what will get him—scoliosis, childhood leukemia, malignant tumors, an aneurysm, learning disabilities?

After my epiphany--when the question came to me that if I had no fear around my son's incurable medical condition how would I live my life differently--I noticed the extent to which I avoided anything that would remind me of my son's condition. A nice little old lady at church who told me that their nephew died of NF1, I made sure never to cross paths with her. The brochures that mention how the tumors can turn cancerous, I didn't want to read those. The ctf.org site that a nurse told me to visit, I never returned to it after learning that it's the Children's Tumor Foundation.

I notice how often fear prevents me from enjoying the moment. Sometimes it is painful to watch my son play, laugh, sleep, and cry. Today he cried "No, don't like it" over and over again. I asked him what he didn't like: Mama's singing? Looking at the books? Playing on the pillows? Then I asked, "You don't like to be patched?" He began to sob uncontrollably, saying "I don't like it. I don't like it. I don't like the patch." He was close to finishing his four hours for the day and was ready for the countdown (we countdown from 60 together when it's time to take the patch off).

If fear is part of the human condition, then it must serve a purpose. Is it even possible to rid ourselves of fear? Fear does one of two things for me. It either paralyzes me or helps me get into action to do what needs to be done for my son, even if I don't like it.





Tuesday, August 16, 2011

Contours of Fear: Which is the greater miracle?

Day 5 of my 30-day challenge to post on fear.

“Which is easier, to say to the paralytic, ‘Your sins are forgiven,’ or to say, ‘Stand up and take your mat and walk’?” (Mark 2:9).

It’s difficult to go out as a family these days. Ever since our son Tito had a brain and skull surgery over a year ago, he hardly looks like he used to. People used to comment on what a ‘perfect’ baby we had after he was born. His features were petite and refined, like a chiseled statue that attracts the eye. I liked it, vainly put, when people said that Tito resembled his mama. Those days have passed.

Tito looks different than other kids, so when we go out in public it means having to endure stares, pointing fingers, and comments. I think of the deformed Joseph Merrick (the Elephant Man) and the hell he must have faced as a child and adult. Just last week at the park, one little girl started to cry after seeing Tito near the slide she wanted to go down. She quickly climbed back down the roped net and vanished. Some older boys said, “Dude, did you see that baby? He doesn’t have a left eye.” I wanted to scream, “Yes he does . . . the eyelids are just sewn partially shut, and he has a gold weight inside the lid to keep it closed.” Instead, I picked up Tito and departed with our vision therapist in tow.

It’s no fault of Tito’s. “We nicked several nerves behind your son’s left eye trying to remove the tumor,” explained the surgeons. I thought the purpose of the surgery was to patch a missing bone in Tito’s skull to prevent the brain from entering the left eye socket, not to remove a tumor. This added detail meant additional hours for Tito in the OR, and they couldn’t even get it all.

A missing skull bone, tumor, cranial-nerve damage—these are complications related to a condition called neurofibromatosis type 1 (NF1). It means that Tito lacks a protein in his body called neurofibromin. The average person takes it for granted that he or she produces this tumor-suppressing substance, which tells a cell when to stop dividing. NF1 affects the skin, nerves, and bones. It was once thought that Merrick suffered from NF1. Some argue that he had a combination of NF1 and Proteus syndrome.

As a two-year old Tito has no awareness, at least for now, of what he looks like. He has no recollection of the brain and skull surgery nor of the seven subsequent trips to the OR for the left eye as a result of the mess caused by the brain surgery. Thinking of the future, we have no clue what it holds. As one friend whose daughter suffers from hydrocephalus put it, you just never know; even the doctors do not know. The question now is whether to pull Tito’s left eye since it has no sensation, it fails to blink properly, it produces very few tears, it has limited movement, and the cornea is ulcerated. More so, as people point out, Tito looks funny.

Though Tito suffers from the effects of his condition, he lives without fear of it. He is highly social and loves to be around people. In the grocery store, Tito will keep saying hi to someone until he gets a response. For me, it's a different story with strangers. We went out to dinner as a family. A gentleman was standing in the entryway waiting for his wife to finish up in the bathroom. He saw Tito and began to tell of his wife’s recent trip to Africa. Her mission as a nurse was to help perform surgeries on African children who had ‘monstrous deformities.’ Another incident occurred while out at a coffee shop one recent Sunday morning. A man spotted Tito and came up with a wince on his face and said “Ooooh, what happened?” We explained that Tito has a tumor condition, to which the man replied, “You just need to pray for healing. Jesus can heal him. Jesus is the one who can work a miracle in your son.”

An insight has followed for me and my husband. Which is the greater miracle: for our son to be healed and for his looks to change so that he can be accepted by society, or for him to know each day he has on earth that he is and always will be loved? I take comfort in knowing that my son radiates joy because he is loved. It haunts me to see perfectly healthy children grow up unhappy because they don’t get the love they need.

I see a connection and/or disconnect worth exploring between love and fear.

Monday, August 15, 2011

Contours of Fear: I could see but now I'm blind

Day 4 of my 30-day challenge to post something on fear.

My two-year old son, Tito, can sing the first verse of Amazing Grace. It ends with ‘I was blind but now I see.’ Unless you have heard your visually impaired child sing this; unless you have had to restrain your baby to put on an eye patch; and unless you have had to fight to save your child’s vision, you cannot fully appreciate your own ability to see.

Scripture has plenty of miracle stories in which Jesus heals people: the blind, the crippled, the bleeding, the dying—often with only a touch or a few words. Jesus passes by Bartimaeus who sits by the roadside pleading for his sight. Bartimaeus said, ‘Rabbi, I want to see.’ ‘Go,’ said Jesus, ‘your faith has healed you.’ Immediately he received his sight and followed Jesus along the road (Mark 10:51–52, NIV). But what if your child could see and then loses vision? I’ve been pondering where the miracle is in that, and will share my insights in the next post.

To save vision in Tito’s lazy eye, we’ve had to enter the scary world of patching. It involves covering Tito’s good eye for an extended period every day. In our case, Tito patches 4 hours a day. Patching is, indeed, a burden for the child and the caregiver. All aspects of life—naptime, mealtime, playtime, running errands, having friends over, going out—revolve around it. Once the patching sessions begin, I must be continually vigilant and present.

What goes on in a parent’s mind of having a child born seemingly perfect only to present with problems in the early weeks of life? What has it been like watching my son’s appearance change for the worse? I say worse because of how others react when we take Tito out in public. Alien, monster, and pirate—these are some of the descriptors I’ve heard people say in reference to our son in an attempt to accomplish what I'm not sure except to silence their inquisitive children.

Accepting what is so remains difficult. My son has NF1. Living with a never-ending fear that my son will be asked stupid questions and teased for the way he looks is a rough road too. Would a prosthetic left eye and lifting the eyelid improve his looks so that he will have an easier time socially and psychologically? This is the question posed recently by some of Tito’s eye specialists. I fear that Tito will be picked on and have to answer inquiries his whole life if his left eye remains. I am equally afraid of Tito losing his eye permanently by surgeons plucking it out.

In moments of tough choices, I find no escape from the paralyzing effects of fear except in the question: If I had no fear around my son’s medical condition, how would I live my life differently?

Sunday, August 14, 2011

Contours of Fear: Simply noticing

Day 3 of my 30-day challenge to post some thoughts on fear, in particular the fear I experience over my two-year old son's ongoing battle with a tumor condition known as NF1. The condition is formerly known as von Recklinghausen disease as a tribute to a German pathologist and researcher. Very few people I talk with have heard of neurofibromatosis.

Today's post has to do with observing. As someone who values research and analysis, it is counter-intuitive for me simply to notice. I prefer to interpret and find meaning. But I'm finding that taking notice has value too.

What I have observed with fear is how quickly it comes on. Without warning, with no time to resist, my fear can grow to an unmanageable size. The level of fear I experience is quite disproportionate in size to the amygdala, that small almond-shaped structure in the brain tied to emotions.

Like the time, for instance, when I ran into a pack of ferrel dogs. It was dusk. I was alone on a nature trail. As fear flooded my body, I forgot everything. I forgot that I had pepper spray in my pocket. I forgot to breathe and began to hyperventilate, losing sensation from my mouth on down except pain in my chest. I forgot that I should not run the other direction.

So fear comes on suddenly, usually as a result of an event or thought, and causes forgetfulness. The curious thing is that I tend to remember very well those times of being afraid. When my son was just seven weeks old, I know exactly what I saw that made me stop what I was doing: mosaic patching on his skin, like stained glass, though not in bright colors but faded brown. Seven spots appeared overnight on different parts of his body, each with a peculiar size and shape. I remember exactly where I was in the house: in the nursery at the changing table with my baby. I remember exactly the time and day of the week: 9:15 am, Sunday morning, getting ready for church. I remember exactly who was in the house.

Fear without warning. Fear and forgetfulness. Fear and remembering. What a peculiar thing fear is.

Saturday, August 13, 2011

Contours of Fear: Of the known

Day 2 of my 30-day challenge to share some thoughts on fear.

A fascinating thing I experience with fear is the direct correlation between what I'm thinking of and my level of fear. It makes little difference whether my thoughts are based on fact or fantasy. A lot of my fear stems from thoughts of what could happen, a fear triggered not by reality but by the unknown.

Next is the fear of what I know will for sure happen, things I have no control over: that a loved one is dying, that my sister will soon be moving far away, that my son will need surgery. As soon as such dreaded events take place, then my fear dissipates, making room for other phenomena like grief, sadness, acceptance.

Fear of the known. In the months leading up to my son's first birthday I knew that he would have brain and skull surgery. Unable to sleep during the nights, I would dwell on the details of the surgery to come. Nurses and doctors made it clear what would take place. Our son would be cut open on top of his head from ear to ear with a zig-zag incision. The doctors would peel down his face after taking apart the bones in his forehead. He would need a blood transfusion and other blood 'products.' The bones would be put back with dissolvable plates and screws. He would need a bone graft to repair a missing portion of skull bone. The surgeons would save me some of my son's hair.
He would spend time in the ICU.

During my sleepless nights, fear manifested itself in a physical sense. My heart raced. My breaths were shallow. I felt nauseous and weak. I had no appetite and no desire to keep going. I couldn't quit crying.

Then arrived the day of the surgery. It was a drizzly Tuesday morning, April 13, 2010, in Seattle. As commuters made their regular pilgrimages to work, my husband and I scooped up our tired and hungry one-year old son and made the short trek to Seattle Children's Hospital from the Ronald McDonald House for a 6:00 am check-in time.
I knew that these were the final two hours of my son's life without scars. While waiting for the team of anesthesiologists, I ran my fingers through his hair. Any minute they would take him from my arms.

At 8:15 am, the chief anesthesiologist gathered her brood in a circle. “All of the surgeons are in the building,” I heard her say. It was time to let go. With my son out of sight (which hall did he disappear down?), I lost the ability to think and recall words. Turning to prayer, I censored myself because prayer is more than some magical ritual to avoid reality or to manipulate God into giving me what I want: my son back without neurofibromatosis type 1 (NF1).

As the day crept by, I noticed how my fear lessened while my son lay in a 7-hour surgery.
Beyond the realm of fear was an unbearable silence that remained until I saw him in ICU after the surgery—when he was unrecognizable to me, and I to him. It's as if grief showed and chewed up my fear. Several insights followed. I saw an intertwining of grief and loss, and what I missed was my son's presence, his smiles, his wide-mouth slobbers on my chin, his response of “okay” after everything I said, him saying "mama."

Beyond the realm of fear was sadness. Beyond the realm of fear was acceptance of what is. And beyond the realm of fear was love.


Friday, August 12, 2011

Contours of Fear

My husband, Ernesto, took on the challenge of writing a poem every day for 30 days. His inspiration? A TED talk he saw at ted.com. After 30 days, Ernesto has a fresh collection of poems worth reading and pondering at life-and-faith.org.










I found Ernesto's discipline of sticking with the challenge inspiring. So I too am taking on a 30-day challenge of posting on my blog. My topic? Fear. Since I'm writing a book on fear, it seems natural to share my insights on this undesirable emotion or mental state for the next 30 days.

The impetus for my book began with a question, one that came out of nowhere as I was making the long drive to work at my father's paint store last spring. Suddenly, a question came to mind while I was bemoaning the fact that despite having a PhD I don't make enough money to cover the bills each month. Right in the middle of feeling like a total loser in life came this question:

If I had no fear and was not trying to impress anyone,
what would I create my future to look like?

I sat in silence with this question. As I imagined a life without fear and trying to look good, my back and shoulders and arms and head felt weightless. Peace overcame me. A couple of things struck hard. First, if I had no fear and wasn't out to impress anyone, I would be a musician. Strange as it sounds, I love to compose music, sing, and play the guitar, piano, and drums, but you'll never see me doing any of these things because I'm afraid to do them in public. Instead, I have spent 29 years of my life in school and have four degrees that range from computer science business to theology. The other striking realization was how much of my life I've spent in fear and the need for others to like and accept me.

Fear and the need to impress go hand in hand; yet, I have narrowed my topic to fear for one clear reason: I discern the need to manage my fear over my son's incurable tumor condition lest I let fear warp me. The question for me has become:

If I had no fear around my son's medical condition,
how would I live my life different?

As a human being, it is natural to have fear. As a Christian, I feel it is especially important to learn, with Jesus' help, to manage it. I read the 'fear nots' in Scripture, and yet, I still spend a great deal of time being afraid. Fear seems to take on a life of its own in my body, overloading my senses, leaving me unable to think or act rationally for minutes, hours, sometimes days.

Tomorrow, I will share the key event that moved me beyond the realm of fear to two other realms, one of acceptance, the other of grief.