Journal musings from shortly after my mom tested positive for HD until about two months after I learned the same.
If I'm Positive (4 Aug 2008) If I do have Huntington's Disease, I will push to the front activities that will require the most physical coordination and thought - recording songs I've written, for example.
Fear (25 August 2008) Lord, I refuse to fear Huntington's.
Like a feather, I pray for your breeze, Father, to float me through my writing, Tom's death and responsibilities, chapels, HD.
I'm floating through each moment, feeling your Breath of Creation and Sustenance buoy me up, refresh the words and people, flutter letters and thoughts and words and paragraphs and songs and ideas -
lightly aerating as I float, too.
Patience (31 August 2008) Do I want to be tested for HD because I'm impatient? Father, please tell me your timing.
Flow (8 September 2008) 2 Cor 4:10.
Lord Jesus - make your life radiate from this body, this body that carries death around in it all the time.
This death in my body is real. It's awful, it's damnable, it's hateful, and snaky and ugly and truly despicable.
But your mark, your spark, your life, your brilliance radiates from this ugly, putrid, violent, seeping, hated, stenching, obnoxious, abhorrent, outline of death.
Your beauty's in here Your love is here Your flowing, thriving, living hope is in here, too.
I am not weighed down (9 Sep 2008) I am not weighed down
You lift me up by your love, the intense outrageousness of tree and scent and rushing blood through an outlandishly well- functioning body
Every thought and logical conclusion and intuitive leap amazes me.
Every blade of grass and dripping leaf profuses your embrace
Every time I've run fast with smooth, intense chugging is a tip of your many brimmed hat to my longing, expecting need for joy and unimaginable future goodness
Hope (21 Sep 08) From Ken Merrifield's sermon:
Our hope is not in a God who always rescues, but in a God who became a human, identifies with us, experiences our sufferings and victories.
The Insider (23 Sep 08) Thank you, Lord, that you are experiencing this with me right now. Whatever good or bad, easy or hard, it's happening to you, too. My anxiety, insecurity, joy, lust - you know and feel it. But you take me out, beyond, in this all, taking it captive, responding as God, because you are God.
You are the God who became an insider.
Thank you, Lord! Daddy! Papa! Bro!
Boundary Lines (9 Oct 08) Father - You have assigned me my portion and my cup; you have made my situation, my lot secure. The boundary lines have fallen for me in pleasant places Surely I have a delightful inheritance. Ps 16:5-6
You've put me in a place of influence and rich life The house we're in is beautiful, the neighborhood secure. Our children are whole, healthy, and in your home You've given me wit, a Ph.D., songs, courage, Barb, and SIL
Thank You (29 Oct 2008) Thank you, Father, that Huntington's testing is available - even if it costs $1000 - and that I have three siblings who are each wise and generous. That makes learning to take care of Mom and Dad that much easier.
Seasons Roll (3 Nov 2008) The leaves are turning gorgeous in Dallas. Thank you, Father! That you've set diverse seasons in motion around the world, and given me and my culture the capacity to find pleasure in the changes, surprises, and continuities.
Please - May I have assurance and strength from you this week? Something I can hold on to, to keep me from anxiety and flailing and distraction, that often comes with the tasks that seem beyond my abilities and stamina...
From God (I'm pretty sure) Things will change Seasons will come and new joys and pleasures and tasks Let them roll Trust Me for stability, continuity Ask Me for help in each task Look up for joy and hope and beauty Save Now
I'll surprise you
Preparing for Results (23 Nov 2008) I'll get results for HD on Wednesday, 10 Dec. Part of me hopes for a positive, so I'll have a dramatic narrative for my life, an enemy to fight courageously against, and an excuse for failures of energy or memory.
Then I'm ashamed of this, worried about what it says about my character - it's self-centered and illusory. Cleanse me, Lord, from sins behind this.
If negative, everyone around me will have to take care of me less (probably), and my kids won't have to deal with it.
Jesus, friend, brother - Give me the grace to take either answer, give you glory, grieve what needs to be grieved (loss of this drama, or likely reality of heavy struggle for me and my loved ones), courage to embrace the new reality, and freedom to express joy and sorrow.
Mt 6:25-34 - Don't worry about tomorrow, about your life, your genes, your symptoms. Life is a Good. Life is Good. And God will take care of you.
Family of Origin (25 Nov 2008) I was with my parents and siblings for Grandma Enns' funeral. With Mom, Dad, Lori, Lynelle, and Brad - crying, truth-telling, sort of praying, and laughing. Lynelle's life is so hard, Lord - please save her more! And Bob.
Lynelle experiences emotions and ideas ahead of, and more intensely, than the rest of us.
Lori tells the truth, in inclusive ways.
Brad has wisdom and clear, deep thoughts.
I think and act, offer protective anger.
Drama (1 Dec 2008) I can have drama in my life even without being positive for HD. Mom still has it, and maybe one or more of my sibs. I can write HD songs, become an HD activist if that's what you want, Lord.
Postponed (9 Dec 2008) Gail, the genetic counselor, called today and said the results from my blood test are not in yet, so we'll have to reschedule for Dec 17.
OK. I can deal with that.
Results in 2 hours (17 Dec 2008, 7a.m.) Psalm 22:3-11
You are enthroned as the Holy One you are the praise of Israel ...
I trust in the Lord Let the Lord rescue me Let Him deliver him since He delights in him ...
You brought me out of the womb you made me trust in you even at my mother's breast From birth I was cast upon you from my mother's womb you have been my God Do not be far from me for trouble is near and there is no one to help.
Father - you are the Holy One, who created me - thought of me before I was conceived, forming me in Mom's womb, growing and teaching and discipling me at every moment.
In two hours I get results of my Huntington's test. Nothing will change in my body when I found out. But I want my mind and soul and body to be deepened and cleansed and strengthened regardless of what the number is.
If the number is low, let me rejoice for myself, Barb, Mindy, Austin, and Lydia, and resolve to enter the battle for Mom and Dad and Lynelle and Lori and Brad more deeply, intensely.
If the number is high, let me rejoice for the joy set before me, focus on the steely requirements my will and soul and body will need to focus and live.
Lord - maybe the lack of focus and specialness that would come my way with a low number might be your way of deepening my love for others, increasing my self-sacrifice. Lots of energy has gone into prep. for this moment. If it dissipates, spreads to others, I feel less special. People I tell will rejoice with me and then move on with their lives.
If the number is high, then people will focus on me, offer support, prayer, empathize.
Father - forgive me for the selfishness in me at this moment. But you love me, delight in me. That is much better than others' empathizing looks and words. Help me live in your True Reality.
Singing on the way to the hospital (17 Dec 2008) [Barb's driving while I hold the hymnbook] I want to sing old hymns I sang as a child. Why? Because I'm moving into the unknown, and want to feel stability, the known.
Maybe revolutions need new songs more than healings.
41 (17 Dec 2008, 9:06 a.m.)
First Response to 41 (17 Dec 2008) Gail, my genetic counselor, came out to the lobby to greet us and take us back to her office. She's an extremely cheery person, and we chatted a bit about her trip to the Peruvian orphanage the week before. Then she said, "Well, the results are not what we hoped for. You have the mutation - 41."
It was slightly surreal, because I realized at the moment that I had really expected to be clear. And here was this empathetic, cheery person telling me that I was condemned to something amorphous and horrible. I cried a little, we talked for awhile about who we should tell and how, and what this means, and that there's not really a chance that it's a mistake. Gail repeated that there's no way to predict when symptoms would start, but that they would, and that I could have many many years of symptom free living ahead.
Barb drove home and I tried to sing hymns again, but they wouldn't come out. She took me to the SIL center, where I was leading meetings in the afternoon. I went to the Activities Center and played a piano by myself. I had brought some of my own songs, and I played and sang and cried and played real hard and loud.
I called Lynelle and Lori and Brad and Dad somewhere in there, and Mom later.
Around noon I went for a run on the trails on the SIL campus. It was drizzly and cool, but the leaves on the ground and the mist were painfully beautiful. I ran fast and yelled. But then there was somebody nearby and I had to be quieter. I cried.
I sent an email, and then I led the meeting I had planned. It worked alright and gave me a little structure and normalcy to connect to.
I was exhausted that night and slept well.
Loss? (19 Dec 2008) We'll go through stages of grief. What will I grieve the loss of?
Growing really old like many Schrags and Enns's do
becoming a wizened elder statesman in arts and missions circles
maybe walking Lydia down the aisle
Kubler-Ross's stages of grief - Denial, Anger, Bargaining, Depression, Acceptance.
Allow myself rawness.
Huntington's sucks (19 Dec 2008) Huntington's sucks. Shit. [with lots of pen stabs around the word]
New Reality (21 Dec 2008) I'm in the process of accepting this new awareness of an old reality. B is praying for a reversal of the results, a complete healing. F said he's praying for 50 more years of unaffected life.
I felt a little deflation in my heart when Ben prayed - I'm figuring out acceptance, and he wants rejections. Does God?
Mindy & I talked, and decided that
God could and might heal this miraculously
God could and might heal this through scientific advances by His image-bearers
God might let Mom and me and maybe a child suffer this
In all cases, I need to actively seek you, Father, to know how to respond, and work out my salvation with fear and trembling, to let my light shine, work for the spread of your Kingdom.
I feel today like I'm moving quickly into an acceptance of my HD, and ideas of active Kingdom work. I want to write songs for HD sufferers and organize other creators to do it, too.
So...all of the ways God works are important, it's not all about me, and I need to strive for more faith! I believe, help thou my unbelief!
I also think I'll need to figure out how to help others respond to this news. But Barb says not yet. They can be stunned and awkward and confused while you figure this out.
Kubler-Ross's stages are not too helpful. I may feel all of those things, and not necessarily in that order. I expect I'll feel pain at the loss of my lovely futures periodically throughout my life.
But this: Father, help me put your ultimate kingdom future - Rev 7, whole bodies and minds and spirits - more and more firmly in my heart.
Nothing's Done (22 Dec 2008) Nothing here is done. So
we can experiment
we can let failures sift through our fingers
we can always hope and work for something better, more beautiful
we can hold lightly to everything in our grasp
we can be content with glimpses of the Final
Application: I can wear a new combination of clothes for a whole day and then decide if it works, goes together. I don't have to know that for sure before I put it on.
Huntington's Cookies (23 Dec 2008) Some thoughts to follow up on
I feel like HD has given me energy, focus, a power. When I write to CH, I know I could say, "I have HD," and make a special connection to reality that he would have to acknowledge.
Maybe everyone could/should have this recognition of human mortality, original sin, the ultimate ephemerality and fragility of material, sinful existence.
MM, exuding deep Mississippi warmth and generosity, baked me peanut butter cookies after she heard the news, to ease my suffering. A balm from Jesus.
Caring for caregivers - I want to help Barb be healthy for the long haul. We both need each other. Maybe this will help me exercise with her; and meet with a counselor together.
My sibs could be in the HD Creative Coalition.
What kind of guy? (26 Dec 2008) Father-Dad - Am I someone who can move quickly, healthily into proaction with HD? I've been been mostly engaged with thoughts of entering the HD community, making plans, helping Barb, leading my family through this. But yesterday afternoon I got depressed, with a feeling of hopelessness.
So I don't know. I don't want to move too quickly into motion. But I also don't want to waste time and energy unnecessarily.
Questions to Guide My Entry into HD (26 Dec 2008)
How fast should I move into new activities? Factors: mental health, available community, spiritual stability and growth.
How can I change elements in my life to extend the possibility of being healthy longer? Factors: assess current habits of my life.
How am I uniquely fit to give to the HD community? Factors: ?
For me, 3 possible research studies:
Coenzyme test. 5 years, double blind. Thinking about taking a placebo for five years makes me feel sick.
Predict HD. Draws on my interest in knowing as much as possible. But could make me focus on symptoms all the time, rob me of peace and sleep.
Music therapy.
Create Group
4. Who can I gather for support and growth? Spiritually, medically, socially, emotionally
5. What information will I give to different people in my life about my HD - which, when, how frequently, what media (blog, phone, f2f, etc.)?
6. What is my HD like?
CAG count, symptoms, etc.
Who I am, my faith, support systems, health, distance from HD Center of Excellence, flexibility in my work, etc.
7. How can I control HD in my mind and activities so they don't overwhelm me?
Wretched Beauty (26 Dec 2008) Possible HD inspired message for a chapel, sermon, etc. [that got out of hand]
Describe HD Then: You have it, too. It may not be HD. But there's something in you that you're going to die from. These bodies are wretchedly beautiful.
In God's image - marvelously, wonderfully made.
Fatally flawed at our genetic roots - subject to ripping and degredation and hate and
Auggghhh!!!!! How can we be in this one body!? It's going to tear me apart!!
Unbearable hope! Unimaginable pain and torture!
Ripping and loving from every chromozone within and every community without!
Entropy and ecstasy and centrifuge and centripete and holding together and creating and flying apart and destroying...
One body, one universe, one place, one being...
One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One God One GodOne GodOne GodOne GodOne GodOne GodOne GodOne GodOne GodOne God
Subsuming hope and pain and terror and life and eternity
shalom peace life life from death from chaos
hope from despair and loss and horror
Jesus took it all into his one body. Zygotes carrying death in each strand of DNA. His Father fearfully and wonderfully forming it in Mary's womb. Each new neuron; dendrites, heart, fingers, eyes, hair
death pressing down and clogging veins life breathing out and freeing growth
Oh Father - this deathlife hurts, and it invigorates
Anxiety (29 Dec 2008) Father - I felt depressed and irritable last night, couldn't get to sleep until after midnight, and anxiety, and anxiety brought new todos to mind. I wrote some of them down.
This could have come from Mom and Dad and the Morris's leaving yesterday, I forgot to take my sleeping pills at first, mid-vacation blues, etc.
Or maybe I have HD symptoms or maybe I'm empathizing with others' HD experiences. I read that people in the Predict-HD trial were usually depressed. Lord - Help me not take this on.
I'll have to restrict, channel, control my time thinking about HD, learning about it on-line. Otherwise I won't live now.
And somehow, Father, I need a regular, warm, healing, beautiful place to go to communicate with you.
Calm (30 Dec 2008) Yesterday I felt better, was productive, and slept pretty well. I prayed that you would take my anxieties, and help me sleep. Thank you.
I want to add more deeply colorful, shaped objects and sounds and spaces and smells around me.
Speaking About HD (2 Jan 2009) Possible ideas to include when I talk about HD (GIAL, Belhaven, etc.)
When you see imperfections, oddities, ugliness,
Recoil
Reflect
Return
Run with us!
That mother with HD in Chris Furbee's video carries God's image
Pithy possible wisdom
Embrace HD symptoms to reduce them.
Embrace it to erase it! (Confine it to refine it? Abhor it to restore it? Attack it to retract it?)
I am who I am today (HD moves slowly)
What you do can change how you feel.
Pity, Reflection, and Courage (3 Jan 2009) Father - what Scriptures speak to diseases like HD?
Lynelle's mentor gives her no pity. She says pity leads the pitied to self-focus, self-pity.
I can see this in me. I don't want to be focused on myself except
to reflect so others can benefit from my experiences
to reflect so that I and others can treat my sickness better
to reflect so that I can name, understand, know what's going on in me and so can more wisely make life choices
Can I find (auto)biographies of people who have addressed their failing bodies and minds with faith, sacrifice, courage, joy, God-centeredness, knowledge, realism? (they're probably everywhere. I'm not that unique)
Psalm 27 in HD (3 Jan 2009) The Lord is my light and my salvation What shall I fear? The Lord is the stronghold of my life - of what shall I be afraid?
When HD advances against me to devour my flesh and mind When proteins multiply to make me stutter and stumble and dance They will stumble and fall.
Though a whole army of genes mutate and attack me even then will I be confident
I will gaze upon your beauty I will dwell in your house For in the day of trouble you will keep me safe in your dwelling
Good Words (4 Jan 2009) Matthew 12:35 - the good man brings good words out of the good stored up in him.
Lord - help me store up good things in my mind, my heart, that will overflow out of my mouth.
How do I approach irritation, anger, depression? As though I didn't have HD - confess, simplify my life, pray for joy, repent, practice gratitude, don't ever use HD as an excuse.
Possible action points:
Identify HD symptoms as they arise (maybe with Dr. O and Predict-HD), then pray for God's healing of each thing. Tell Dr. O?
With Dr O (neurologist): 1) find out how to join Predict-HD study; 2) choose supplements to take (COQ10, Longevitrix); 3) choose life changes - exercise, social activities
No Excuses (5 Jan 2009) Huntington's disease is not an excuse
for hurting someone in anger
for being selfish
for not listening to God
Let me not be motivated by anxiety, fear of failure but by anticipation in discovery of what God's going to do, what we're going to create together.
How would I live differently now if I knew when? (8 Jan 09) How long you expect to live impacts the choices you make. At some level, it's silly to say, "Live every day as though it were your last." OK, Lord - How would I live differently now if I know my HD symptoms would start in earnest in
2009
Extreme focus on communicating and being with my closest peeps, my family, SIL arts folks, etc.
solidifying my tangible legacy - like recording my songs, publishing my book
don't start new things, but spark them in others by leveraging people's concern about my imminent demise. Don't do things like enroll in a 2 year M.A. program or buy tickets to attend the next olympics.
2014
Strong focus on communicating and being with my family and other close peeps
solidifying my tangible legacy - like recording my songs, publishing my book
continue interacting with 2nd level peeps - e.g., professional groups (SEM, ICE),
start 1 or 2 new things, but maintain current career view (don't look to change positions)
strong focus on giving to the HD community, starting in 2009
2019
Firm, measured focus on communicating and being with my closest and 2nd and 3rd level peeps
Possibly work toward a new career position.
slow entry into HD community
2029
plan for next career phase
slow entry into HD community
?
I don't know when it will start, so how should I change the way I live? My days are likely fewer than I imagined a month ago. So maybe I should live as though I have only 5 years left. And keep re-upping when new 5 year segments come up. This adds focus and energy while still doing what's necessary for medium term commitments.
But the most important time reality is that I'm going to live
Forever, regardless of my number of days on Earth. How does this factor in? A good friend offered this deep wisdom when she heard that I have the HD mutation:
What a gut punch. I had just recently been thinking that you must have dodged this bullet since I hadn't heard any news about Brian's mom.
It's a strange thing to know the future like this. I sometimes wonder whether Hezekiah was grateful that the Lord extended his life 15 years, when he knew he would die in exactly 15 years. In Daniel it says that He "reveals deep and hidden things; He knows what lies in the darkness, and light dwells with Him." He has revealed these dark, deep and hidden things to you, but light dwells with Him - and He dwells within you. The very One who knew the hour of his own excruciating death from the moment He created time is dwelling within you, lighting each sober, fragile step. Great High Priest seems like an understatement.
Even if the symptoms of the disease manifest tomorrow, you have reason (like old Simeon) to be dismissed in peace: Your eyes have beheld His salvation, and you have served the King faithfully all the years He's allotted to you. You don't have to add to your current distress the nagging regret of having lived half-heartedly for the Lord. You gave Him your firstfuits.
And if he extends your productivity as long as Mrs. Schrag's-- well that's a lot more time than most people in the history of the world have enjoyed. I can only imagine what you'll accomplish for Him if He extends that mercy.
Flying to Portland (16 Jan 2009) I just read half of Oliver Quarrell's Huntington's Disease (2008). It's good. Anyone touched by HD should have this.
But the question comes up again - how can I keep from giving symptoms early birth psychosomatically? I could meditate on parts of the book and end up in Portland depressed, irritable, anxious, and apathetic, emotions Quarrell says are often early signs of HD.
One answer: immerse myself in big things God has created. We must be over Colorado or Wyoming - incandescent ragged peaks stun my psyche. If I get sick - an hey, even before - I want to regularly experience mountains, oceans, vast plains, huge skies, enormous trees, pungent peppers, sharp and arid deserts, startling yellows and blues and greens and reds... these all remind me of life and my blessed smallness in it.
Wake up, Brian!
Imagining Dysfunction (16 Jan 2009) Imagining myself becoming more and more emotionally and cognitively out of whack is really hard. Now I can think I should be able to say, "This irritation is caused by HD, so take a deep breath, hum a tune, dance a jig, breathe a prayer, and let it go."
But I don't think it will be that easy. Barb's experiences tell me that I may not be able to control some of this. But then, Barb's happy and competent now. Meds might help.
Could there even be some positive results of the social disinhibition that comes with HD? More willingness to enter social situations? Say important or funny things?
Artistic Healing Possibilities (17 Jan 2009) Things I can imagine doing to help heal my or others' HD:
Dance - many native dances are designed to heal
Song - Sing "Call Him Up" ("Can't stop praising His name"), jump and dance
Flute gatherings - Wiconi Int'l helps with these healing meetings for cancer survivors in the Northwest
Choosing to Deny (5 Feb 2009) Dr. O said his testing makes him over 50% sure that I'm manifesting HD symptoms now.
Huh.
I'm choosing to disbelieve this until I get a more thorough exam in Houston (March 17). I still want to try to be part of the Predict-HD study.
I felt fairly apathetic during the Izibongo recording at the studio, and had a hard time remembering some voice and piano parts. But I did nail the cuatro guitar pattern - simple, repetitive, clear pattern. I nailed it. On the way home with D my words seemed to have trouble flowing.
When I was playing the piano part on "Forever," I felt restricted and unimaginative. I wonder if my best piano days are over. Maybe I should practice, learn new styles, classical pieces.
What if I'm starting to show symptoms psychosomatically. Hopefully, the Houston tests will clarify things.
Father - my days are but a breath to you (Ps 38). But I have to live them. Invade me, urge me to bless and father Mindy, Austin, and Lydia. Incite me to love and husband Barb. Enthuse me in my SIL and ICE work, so I learn and explore and enthuse others. I'm feeling tired.
Wake me up, please! (I feel like I want to go to sleep)
Birds, Systems, and Anxiety (6 Feb 2009) After reading Martin Luther's "Do not be anxious about your life" meditation on Mt 6:25-7:11, in Spiritual Classics, edited by Foster and Griffin:
Birds are acting the way God designed them - knowing where to look for food, how to built a nest, how to mate. God provides for them by designing them and the world to be a system where worms and bird body find each other, providing nourishment for the birds' flying and singing. The bird doesn't worry about where the worms are - she just looks and smells and digs to get them.
When I'm anxious, I'm saying that I don't trust you, Father, to arrange the world to connect our needs and their fulfillment. Forgive me for believing that you're stingy, grasping, smug. No - you are extravagant, open-handed, wise. I don't need anxiety to motivate me to action. I need calm assurance that you've made me and the world more than adequate to thrive. And you will affect things in me and the world with your Kingdom and my best at heart.
HD Symptoms? (07 Feb 2009) Last night while talking at Stanford's InterVarsity, I misspoke while telling a Punayima story: "He should investigate his fiancé's wife more carefully." Students were confused, Mindy corrected me (it should be his fiancé's family). I also later told Mindy to give me her car keys, which she had already done. HD?
Hope of Glory (13 Feb 2009) Colossians 1:24-29
Christ in me, the hope of glory - this is what I have to offer. The hope of glory - not glory itself, at least not fully. It not I - I'm not the hope of glory for the nations, but Christ in me.
I'm struggling with
my identity as someone with HD
my competence in leading the arts movement in SIL
my idiotic need for human approval
My challenge: I'm struggling too much in order to express myself, avoid failure, and not enough to present everyone perfect in Christ.
HD's not the real issue (14 Feb 2009) After reading Praying with St. Francis of Assissi, Humility.
My HD both humbles me and gives me ground to present myself as special. What attitude can I bring so that as my limitations increase, I could be more free and empowered? (p. 79) In humility, we know our real state, which is complete dependance on the will of our God, who nurtures, gifts, and loves us. Rooted in the experience that God gives us everything we need, we are freed from fear and self-absorption and empowered to nurture the needy, share our gifts, and love our neighbors as ourselves.Humility reminds me of the pain and glory of our human condition.
God nurtures and protects me. For my inability to sleep well I thank you, God For my fear of interacting with new people I thank you, God For my failure to complete the two articles I thank you, God For the slowness of my tongue and crunchiness of my thoughts I thank you, God For the loss of control of my movements, emotions, and thoughts as the months and years progress I thank you, God
HD gives me something to blame my weaknesses on. But the truth is that I have fundamental weaknesses whether I have HD or not. Humility doesn't flow from a special state of weakness. Everybody is completely dependent on you, Father. Because I have a bundle of gifts and capacities that marks me as more competent than lots of people, I haven't had to act humbly in relation to others as much.
I am dependent on you for the breath I breathe, Lord, the songs I sing, the beard I grow, the articles I write, the steps my feet and legs take....
Each loss that comes because of HD will provide a chance for me to fight, accept, and learn dependence on you and people.
Anger (16 Feb 2009) Thoughts sparked by Phil Anderson's sermon on anger:
"Anger is primarily a moral and spiritual issue, not of sickness (therapeutic)." True? For some people, is anger like homosexuality is to J - an apparently intractable, entwining tendril of the Fall that you can't just decide to change? What if changes in my brain because of HD make me more and more prone to anger?
Lord - how can I not indulge in anger when it comes?
The Church and My Brain (17 Feb 2009) Sparked from Praying with St. Francis of Assissi: the Church.
"For Francis, Jesus and his church were one and the same."
Lord, I heard on NPR about a reporter in LA who gave up faith in you because he kept seeing your body do despicable things. That's often my response to your bride, too - "If you're living in these people, why can't I see you in them more?"
But Francis and others heard your call to rebuild your church. Domus Mea. My house.
Thank you for NLBF's imperfect reflection of your glory. And help me fight for her - and your church around the world - to become more beautiful.
We are sick and sinful. Break, heal, and restore us.
Is this what's going on in my brain? Unstructured, unchanneled, newish utterances I make feel brittle, contain more memory errors, flow less fluidly - because they're produced by simple neural networks with little redundancy. Utterances - or conceptually connected groups of thoughts - performed many times flow more, because they have multiple paths to follow to make up for damaged neurons.
Jesus - I don't want there to be dying neurons in my brain. Please stop it.
Litany of Joy (28 Feb 2009) Sparked by Praying with St. Francis of Assissi, Joy.
For Lydia's winning the science fair Thank you, Lord, for this holy joy For Matt and Brad's astounding arts brochure Thank you, Lord, for this holy joy For WEA arts task force wanting people to read my article Thank you, Lord, for this holy joy For ICTM accepting my South Africa proposal Thank you, Lord, for this holy joy For numerous invitations for Izibongo Thank you, Lord, for this holy joy For a top notch HD researcher to go to in Houston Thank you, Lord, for this holy joy For the people you are touching through my family - Stanford IV, Ashley, Houston youth groups, Alexander PTA, etc. Thank you, Lord, for this holy joy