OCD in the hospital

A few more entries from my "journal" during our recent hospital stay with our lily, and then I'll try to get back to that "recovery series"!

Christie arrived yesterday, and with my two precious nieces quite literally cleaned our hospital room floor for me. Little hands spilled Christie’s entire water bottle, and both pairs of little hands helped mop up. They’ve been all over the floor and then all over everything else: lily’s bed, my bed, ann’s bed, the chair, the table, the hospital food tray… my brain finally stopped keeping track of the things that touched things that touched the floor. Once again, Christie and her babies have done my ERP for me.

* * * * * * *

The day before surgery, lily says: “This reminds me of ‘The Wild Robot Escapes’ when Jaya and Jad helped remove Roz’s transmitter so she could escape from Hilltop Farm. I’m just like Roz! I have to have my transmitter removed so I can escape from the hospital and get back to where I truly belong.” Lily’s story-loving brain is churning to process what is happening to her.

* * * * * * *

“Transmitter’s all out.” Dr. Matthew, Neurosurgeon, bends over lily’s waking body to whisper in her ear, coax her to wiggle her toes.

* * * * * * *

About an hour after arriving in PICU, she’s alert enough to ask:

“OK, but Mom, what’s it really called?” (She means, what she’s dubbed her transmitter).

“Well, I think the doctors said” (digging deep for the words I had to practice over and over) “it’s called a Pilocytic Astrocytoma.”

“Oh." And then with a sigh: "It’s hard work getting my Pilocytic Astrocytoma out so I can escape from the hospital and get back to where I truly belong.”

I remember they warned us she might temporarily lose her ability to speak. 

I ask her to take a shot at spelling the word I couldn’t grasp or repeat the first time I heard it, and she gets it pretty well right, just two letters off. Then,

“I hope ann doesn’t get it… or you or dad….”

My head buzzes, my heart thuds.

“No, no, this isn’t like that. It just grew in your special brain.”

“Is it because I like robots so much?”

Oh lily, you’re back. It’s really you, all you; their huge fingers didn’t slip, stayed steady, didn’t nudge any of your delicate grey gears that turn and churn out your gifts to the world.

And now I think you have glitter in your brain.

Tumor

Note: this post was composed the day of the surgery, and published much later. To avoid confusion, I must direct you to the following post to find the happy conclusion to this saga! We are learning words like “resection”, “lesion”, “ataxia” and “Learmonth’s phenomenon”.

We pass them around like a hot dish of a grandmother’s brussels sprout casserole nobody wants to eat: “tumor,” “malignant,” “benign,” “the C-word.” 

“Brain surgery” is no longer one of Plato’s theoretical concepts, but something happening to our daughter, today. 

After that first scan I watched myself receive the words, “Unfortunately, we found something…”. I was surprised at my lack of panic. But then words came out of my mouth that I hoped never would, right there in front of my child. I was not prepared for this. I did not rehearse.

This morning I wake and the thought slowly forms in the pre-dawn as if from a script I am reading the first time, someone else’s thought: “lily goes for surgery today.”

I don’t know how to play this role. I can’t identify with this woman walking down this long hallway to the surgical suite beside a waif of a girl with a mass in her brain. I watch her and think, “That is the mother,” but I can’t imagine what she should be thinking or feeling.

The head surgeon, the one with the steel blue eyes, takes my hand in his huge one and fixes my gaze with his confident one. 

There is little to say. So I indicate the stuffy lily chose to keep with her and I say, without letting his eyes go, “She sheds glitter.” 

Pathology

The pathology report comes back.

Benign.

Recovery Series: Part 1-Getting Past Perfectionism

I have my hands full--and my heart full. A new baby girl, lily's been given a new diagnosis (more on that likely to come), a new job, fundraising, traveling, unpacking and setting up in a new apartment…. will life ever slow down? Maybe not? 

I have many more ideas for this blog as life pushes my brain in different directions of learning, and I want to share it all, but there is never enough time. 

In the meantime, I’ve been sitting on a series about recovery--mostly a personal account of my recovery, but with hopefully some ideas that could be helpful to others on the journey. And I've had a bunch of little nudges lately to put it out there. So here goes.

I’m excited--and nervous--to finally be going ahead with this series I’ve been planning and working on for years. I’ve probably waited too long, but I never felt ready to put it out there. I still don’t feel ready to be honest, but I am learning to fight the perfectionist tendency that has me waiting until I have every wandering duck neatly in a row.

Let me just say from the outset that I absolutely acknowledge that the recovery process is unique to every individual. Still, I’m convinced that someone struggling with illness or watching a loved one struggle can be encouraged and informed by hearing about what worked for someone else. I know such stories from others encouraged me.

I also hope to take some of the fear of the unknown out of the idea of recovery. I remember when I was at my worst point, contemplating therapy and the kind of work it was going to take to recover, and I felt more overwhelmed than I’d ever felt in my life. The task, viewed from the bottom, seems insurmountable. Just remember, you only have to take one step at a time….

Which is how I’ll be taking this series. Until next time,

J.

Community

This one’s for you, Passion Play family! And companions from small group. And friends from Women Together. I know it’s a bit long. Stick around (or skip around) for a poem at the end!

Our small family is gearing up for another Passion Play summer. Two years ago, I convinced a somewhat reluctant gem to help me pack up a 2-year-old lily with all her paraphernalia, and all of ours, into a ramshackle old tent trailer so we could spend 9 weekends camping and volunteering as actors in the annual Canadian Badlands Passion Play. It was the fulfilling of a childhood dream of mine. I am excited to say that now two years later, gem, lily and I are embarking on our second summer of Passion Play.

I know that the first time we re-unite with Passion Play family members, there will be hugs and good-natured teasing about the things time does, and maybe some happy tears. And when we part there will be hugs and pain and sorrow tears. And in between will be prayer and learning and exchanging stories. We’ll have potlucks and campfires and late-night philosophical conversations over bread and wine. I won’t have time to maintain regrets or obsess over whether I made dinner safely or what invisible dangers went into my pocket along with my keys. Hugs and words and the love and acceptance of a human community will go a little further in convincing me of the steadfastness of divine love.

The first few weekends are often bitterly cold. The last few can be unbearably hot. There is always a rain- and thunderstorm or two or three somewhere in between, that threaten to wash away friends’ homes from tent city, swirl up black bentonite mud to cling to sandaled toes and heavy linen hems of our costume robes. In all probability, the threat of one of these summer storms will cancel a performance at the last minute. There will be mosquitoes and ticks and sunburn and sunstroke and heat rash. There will be dirt and animals and mud for lily to sit in and cover herself with and I’ll pick her up and then I’ll have to re-adjust the headpiece of my costume with those same hands, and the folds of the veil will blow over my mouth, and I might be obsessed with the thought that I mustn’t lick my lips and I might feel compelled to run to the bathroom at first break in rehearsal and wash my lips and chin until they crack from the water and friction and dry air. And I’ll get a front row seat to watch this most breathtaking story take its first breaths, and I’ll get to be part of the rhythm of that breath.

I’ve already decided that I’ll take the optional audition. It will be nerve-wracking. I’ll probably be awkward. I’ll hate that I wonder too much what the directors think of me and my emotive choices. My stomach will be in a pathetic ball when I check the casting list. I will feel jealousy. I’ll feel dissatisfaction and disappointment, because I’m not the actor I wish I could be, because I can’t do everything perfectly or even “good enough”. Rehearsals will be long and tedious and technical. Lily will get cranky and defiant and uncooperative, and make a fuss in the middle of rehearsal, and I might have to run off stage, face burning, to try to calm her outburst. I might have lines like the ones I choked on last year: “Crucify! Crucify him!” and worry that I said it a little too convincingly or maybe too entirely became the character that meant those words and maybe would be damned. But I won’t have time to be consumed by the worry, because I’ll be consumed instead by the driving force of my intention: to serve this story, and this Story-Giver.

Francis Chan talks about the goal of Christian marriage being to drive each other to the kind of life that leaves no time for arguing. There is no energy left for anger or bitterness; it is all spent toward the single goal: the kingdom of God on earth; pouring out our lives and hearts to hear the words, for our spouse to hear the words: well done, good and faithful servant.

Marriage is of course just a part of what life in Christian community is all about. Christian siblings are all called to love each other with the kind of sacred love that drives action. And when we all join together with a single goal--the glory of God--the results could be awesome. And in between, the love shared, the care and concern shown for one another, the communion and the soul-out-pouring prayer could very well be part of the miracle God will use to heal all our diseases.

With deep gratitude to fellow passion-players, here is a poem I wrote for my Passion Play family 2 summers ago:

Jesus is at the Passion Play

Jesus is at the Passion Play

You mean the man in blue.

Who is the man in blue? you ask

As we wait in the wings for our cue

To search for him, and find Someone Else-

The Painter, the Poet, the Reason, the Pulse.

The man is just a picture.

Who is this guy with loud morning hugs?

This man wakened to early prayer?

These starlets who forget themselves

This one, who wipes feet with her hair?

They’re pictures of Jesus, fair.

This man in his dark disguise-

Dark-white saint, serving the Story

He faces my fear, so I can see

There is more grace, even to me

A Jesus picture--drawing me free.

Who are these people, earthy and drab

Their veils shot through with glory

Who run into the house of mourning

And weep to tell the story?

Who give their life to seek for Life

Who care so much as to hold us dear

Brothers, sister, strangers, pictures

Of Jesus, in body, here.

Come and see, Behold the Man

Picture Life, and what Jesus could do.

The one in blue pictures Jesus the Man;

But all the others, in black and brown

Are pictures of Jesus too.

We’re painting a picture of Jesus

You with the brown, him with the blue;

All of us image-laden pieces,

And I so desperately need you

To paint that picture anew….

Fighting The Machine

Hello, friends! Thanks a million for stopping by again. I found these musings I wrote not quite a year ago. Reading over them, I see again how far I've come in the last few months, and I am grateful:

On a visit with my parents recently, it hit me with a mixture of astonishment and disappointment how much this disorder has changed me. I have become inflexible, easily thrown off by the unfamiliar; whereas change and newness used to thrill me. I miss my old self--my parents’ daughter. They say my lily reminds them of me: her exuberance for adventure, her joy in the out-of-doors, the way she loves to play in the mud! None of those parts of myself have survived the illness.

I’ve become stiff and proper, even stern--a perfect old matron. I, who Pan-like swore never to grow up. I, who feel underneath it all not a day over 16, but trapped, not so much in an older body but an old old mind--a mind knowing too much of fear, and not enough, snagged on its gears and circuits of anxiety and responsibility: circuits that never end or slow down.

Learning new pathways, ways to get off or short-circuit the typical thought patterns, is a slow and awkward re-wiring. The fear-gears on the other hand snapped so easily into place, as if pre-fitted to my brain. Or was it my brain that was pre-fitted to them? What tripped the wire for the waiting blazes of terror? What were the triggers, where are the buttons, and how can I prevent them from being pressed?

Circuits, gears, levers, buttons; machinery--it’s a cold, ugly metaphor for the human brain. But sometimes I do feel so cold. Frozen, paralyzed by the overwhelm of decision-making.

It doesn’t seem fair. Of course it isn’t, to be so prone to these vicious cycles of worry, this clogged-gear paralysis, but “it is what it is” as my psychologist says. The reality I must learn to live within. I pray for the grace to learn well. Yes, grace. God’s grace--more than sufficient to compensate for any “unfairness”. Ah! The grace of God’s unfairness! My only hope after all: that God would not treat this sinner fairly.

The Power of Story

Whatever I may think of my own talents as a writer, I am a storyteller and so are you. And the stories we tell have incredible power over us. I’m thinking specifically of the stories we tell ourselves about ourselves, inside our heads. The importance we ascribe to the various parts of these stories can change the direction of the rest of our life stories.

Selective Story-Telling:

As an example, consider the story I told about the day I drank the orange juice and made a terrible vow (link here). I did not include (and I neglected to include every time I told it to myself, which I did hundreds of times) that earlier that day I’d dined at a restaurant and avoided the pretty little complimentary appies with deli meats, because I was pregnant. At this high-class restaurant in a tourist resort, I had insisted on bottled water, for the sake of the baby. That morning, I had washed my fruit in a bleach solution, then thoroughly rinsed it, because that was ‘best practice’ for this part of the world. I had gone for a run on the beach with my best friend, and stifled my competitive spirit to let her go on without me at the 5-K mark, because I didn’t want to overdo it for the sake of the baby. Every night that visit, my friend and I had sung “Jesus Loves Me” to my baby, at my request, because I had read that she had recently developed tiny ear buds. I left out those parts of the story, every single time.

Over and over I told myself stories of my own incompetence, stupidity and negligence. I told myself stories in which I could never be forgiven. I told myself dark stories with terrible endings that ought to serve as lessons to much better mothers.

I told myself such stories until I no longer trusted myself. What reputation could possibly survive such a harshly selective story-teller? I stopped believing my memory and even my spatial perception.

A New Narrator

It took a while, but I have changed the way I tell myself stories. My new stories are about the same person and the same events, but I have fired my old narrator! My new inner-narrator is much kinder; she tells me stories about a “good enough” mom who is competent in most situations, and knows how and when to ask for help. Her memory, intellect and intuition are reliable, and have never yet led her too far wrong. She makes mistakes, and falls, and is strong enough to get back up again. She lives by grace and serves as an example for others who fall and fear the endings of their own dark stories.

My new narrator compares motherhood to astrophysics or rocket science, and has me saying it with pride: “I’m a mom! It’s no big deal. I’m really good at it.”

This new narrator tells and re-tells the moments of joy and peace and victory, the times when lily and I enjoy each other, the snuggles and kisses and “I love you’s” and games on the floor and laughing runs in the fields. This narrator remembers best the times lily’s accomplishments blow my mind and I allow myself to admit that I had a part in that. And the times lily's defiance and disobedience blow my mind but I keep my temper and deal with the situation in a constructive, thoughtful way.

My narrator insists that, despite all kinds of failings and moments of seemingly total disaster, I am a good enough mom, and that is great.

So what stories are you telling yourself? What are you leaving out? Is it time to start learning to be a kinder narrator?

Limp--a poem, by J

I've been working up the courage to try out a poem on my readers. So, here we go!

Limp

When you are in my kitchen,
Love,

Use the black and white dishrag;

The thin one, the one that’s

Greying to threadbare places

That I have squeezed and rung and twisted

‘Til it wept gushings of warm suds

And all my panic ran down

The grating scruff of your cheeks.

Use it because I have rung pieces of myself

Into the very fabric.

Use it because the grime

Runs quick through those bare places

And with it the guilt

And the fear.

It must run quick because

I am eager to please, and

You are in a hurry, and

Efficiency is essential.

I am glad my favorite dishcloth

Has not outlived its usefulness.

Why I am a Complementarian (And Other Thinly Veiled Attempts to Start Fights in the Comments Section)

Photo credit Stacy Brumley

(I do hope you read that tongue in my cheek).

Deep into the Woods

This post should be at least two different posts, and most of it is really a rabbit trail, but for some reason I cannot pull it apart in my mind. Maybe because my brain is like spaghetti (I’ve actually never read this book, but it looks kind of connected, and do I ever relate to the title!) This post started its life in my head as a tribute to my husband and the way he pulled me through the worst of my illness. Then I realized I’d have to explain my beliefs in more depth, and then, with a pang, that I had not yet been specific about those beliefs. What a sad omission. I intend to remedy that now: to explain my faith and a bit about how it has been vital to my recovery. I hope to do it in a way that leaves you in no doubt whatever that no matter your beliefs, I sincerely welcome and desire your readership, your input and your discussion.

I am a Christian--a Christ-follower, Jesus-lover, baptized believer. Christie and I grew up with parents in full-time Christian ministry. We both chose early, and re-committed later more fully, to follow Jesus. I’m sure I can say for both of us that we could not have recovered without integrating our faith into the process. Because my faith in God is such an essential part of who I am and how I make sense of my illness and recovery, it will feature often in this blog. For me, wellness and faith had to coalesce, but not in the same way some of my Christian friends insisted they should.

I do plan to explicitly address some blog posts to the Christian community because I believe that we are lagging sadly behind the secular western world in understanding mental health. As I see it, the Church has had uniquely terrible responses to mental illness. While secular society is working hard to conquer the stigma surrounding mental illness, correcting popular vocabulary that mocks the mentally ill, and beginning to accept that mental illness is in most respects no different from physical illness, the Church is still condemning the mentally ill. Still telling people with depression to “buck up and rejoice in the Lord.” Still demanding that they repent of their worry and fear. Still frightening young girls struggling from eating disorders with talk of demon oppression, and in general over-spiritualizing mental illness. I’m dismayed to admit that the church is decades behind the rest of society in terms of accepting and reaching out to the mentally ill.

I’ve been hurt by the Church, but I still love it. I love it because my Savior loves it, and sees so much potential in it, as He sees potential in me (now there’s the real difficulty!). Mental illness is not a sin. I do not believe anxiety is necessarily a sin, nor is depression. Many disagree with me, and so throughout my writing on this blog I will attempt to explain my position and convince my Christian brothers and sisters. My hope is that some will reconsider their views on mental illness and the way they talk to their fellow Christians who struggle (or may be struggling--you never know!) with mental illness. For many of us, our healing needs to come within the Church. God wants to be our source of healing, but if His character and message are misrepresented or undermined by the Church, an individual’s faith can actually become a barrier to healing.

With that basic explanation of where I am coming from, let me now explain the complementarian bit, and why I am not actually trying to start a fight with this post.

Back onto the Bunny Trail...

There is a lot of discussion in the Christian community over the roles of women in the church. Traditionally, women have accepted a deferential role of service and giving, while men took on the leadership roles. This practical interpretation comes from an understanding of the Bible which states that since woman was created after man, woman is subservient to man.

Modern feminism has of course called into question this interpretation of Scripture, leading to much heated debate over which roles women can hold in church and family life.

Egalitarianism counters the traditional understanding by pointing out passages which show that there is no favoritism in God’s view of men and women--the best example being Galatians 3:28 which says: “There is neither Jew nor Greek, there is neither slave nor free, there is no male and female, for you are all one in Christ Jesus” (Galatians 3:28; compare also Romans 3:22 and 1 Cor 12:13)--and that Christ’s own attitude towards women was revolutionary in the extreme patriarchal culture of his time. Egalitarians insist that women should have all the same privileges and responsibilities as men. Both men and women should be preachers and teachers, and in the marital relationship both must submit to each other and lead their family together.

Complementarians by contrast, insist on the clarity of verses of Scripture which state that man is the head over woman (1 Cor 11:3), and that men are therefore to take the leadership roles. It is not that women are of lesser importance or position than men, complementarians argue, but that they are different and therefore necessarily fill different roles. Men and women have complementary roles to play in both church and family: men as leaders, women as helpers.

Most of you will see this as a rather extreme oversimplification of the situation, but that is as far as I am able or willing to go in this blog post.

To be honest, I do not consider the role of women to be a central issue of dogma. I don’t think God cares all that much which side we land on in the debate--He cares much more that we recognize Him as the ultimate Head, and that we all equally submit to Him.

In this blog post, I present the weakest argument I know to support my complementarian stance, because I consider a weak argument sufficient.

So with that caveat, I will now present my argument. It is, as I said, one of the weakest forms of argument according to philosophy--an argument from personal experience. As such, it need not sway your thinking much. The experience was nonetheless significant to my healing.

Once Upon a Time

It began with an oath I took before God. I had just been scratched by a strange cat in Africa. I knew nothing about the cat, and next to nothing about diseases from cats that might be harmful in pregnancy, but I had heard of such a disease, and I was terrified. I believed I could have prevented the scratch, so I made a promise to God to be more vigilant about protecting my unborn child.

I later received a comforting email from my midwife assuring me that I could not get the dreaded illness from a cat scratch. However, the promise I had made still stood. A few days later, when I was offered a drink of the famed roadside-stand-fresh-pressed orange juice of the area, I took it even though I was unsure how sanitary the stand could be. Later I lay in a fevered fit, full of guilt and shame for having taken that drink. My still-fresh oath compounded my shame. I vowed then that I would never again do anything if I was uncertain it would be good for my child.

This oath hung like a giant’s gavel over my head. In the following weeks, I discovered I was unsure about most things. On second thought, I was unsure about everything. How could I be sure that the water the airplane stewardesses handed out was clean? How could I know I had not brought back a deadly germ in my suitcase? That I would not pass a harmful toxin to my unborn child if I used that shampoo, touched that doorknob, ate at that restaurant, got out of bed in the morning?

In response to a question from my mom one day, I told her and Jem about the vow I’d taken. Jem’s immediate response was, “That was a really stupid vow to make.”

My mom kindly tried to temper his remark. No, it wasn’t stupid. No Judy you aren’t stupid. But in spite of an initial sting, his gruff words were actually what I needed to hear. There was an ancient solidity, an authority, about his response.

I don’t remember if it occurred to me right away or if it took a few days, but I recalled an obscure passage in Numbers chapter 30:

If a woman vows a vow to the Lord and binds herself by a pledge, and her husband hears of it and says nothing to her on the day that he hears, then her vows shall stand, and her pledges by which she has bound herself shall stand. 8 But if, on the day that her husband comes to hear of it, he opposes her, then he makes void her vow that was on her, and the thoughtless utterance of her lips by which she bound herself. And the Lord will forgive her.

I needed my husband to repudiate the oath from the beginning. I leaned into his authority. I asked him later if he had been thinking of that passage. No, he said, his reaction had been entirely out of his gut. I knew then that I’d been set free.

I didn’t live free right away. The fears had already carved deep striations through my brain that would take many months and much practice to heal. But there was never again a question in my mind that my vow held no power over me.

There were other similar moments throughout those months, when Jem stepped up in a rather knightly way to slay my dragons. One day he told me that God never expected mothers to protect--that was a father’s job. He declared himself responsible for my health. On another occasion, he came home early from work to carry me bodily into bed when I could do nothing but stand shaking and crying. His presence and wisdom through that dark time is unparalleled in any of the fairy tales. It wasn’t exciting or beautiful or romantic in the fairy tale sense, but it was a real-life, albeit earthy, rather dreary, fairy tale.