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.