September 18, 2017

It Was Never About Me

Last April I began writing again, privately, in the little folder on my own computer, hidden away from anyone’s prying eyes.  I had a sense at the time that God wanted me to post again on this ancient blog.  But not yet.  Maybe in the fall.

Now it is fall and I have continued writing since it began in the spring.  So what I am posting now is what I wrote first, back in April.  For anyone who followed the blog years ago you’ll know the references I make to sickness, healing etc.  But for anyone seeing this for the first time, well, you’ll pick up what I’m talking about eventually I suppose, but if you go back on the blog and read what was posted 7 years ago it will make more sense.

Here it goes...

April 2017

It’s a long time since I’ve written to you folks – if in fact there is still anyone hanging around my blog.  I don’t keep up with technology but I always get the feeling that people are constantly drifting around to new fads and trends that make my 2008 blog way out of date.

I’m back in this place because there used to be an audience that was following my journey of China, sickness, spiritual journey and healing.  Anyone who was following that time knows that I stopped talking fairly abruptly.  They may have paused to wonder why or they may have just moved along to some of the other millions of blogs that are available. 

There are a lot of voices online, this is not to be doubted.  I became selfish with mine when my journey started to seem too personal to be part of a choir.

Six years on, I realize that when I stopped talking I was making a choice dictated by fear.  I may have been in a fragile state when I stopped talking to you who were listening, but I left you hanging.  So if you are still there, let’s resume this conversation.  Not because I want to raise up a crowd of followers, but because I think God may want to say something to you.

I will resume because I was convicted by a very simple phrase this week.  Obviously my journey didn’t stop when I left you hanging, but my attitude had shifted.  I went from a posture of raw openness (one that many of you commented on) to being extremely closed.  The processing that I used to openly post didn’t stop – I continued to reflect on pain and healing and sickness in such a deep place that it became unhealthy.  It became about ME.

It’s been seven years now since I was diagnosed and since many of you began an intensive prayer journey on my behalf.  I heard about churches linked to people that I barely knew who were praying for me.  I was told many of them were following this blog and praying for me.  People around the globe were apparently praying.  I was contacted by strangers everywhere who wanted to relate.
The simple phrase I heard this week is “It was never about you”.  

I think I knew that while I was still posting seven years ago, but when I closed up I forgot.
I’ll share first about why I closed – the fears – then we’ll see what happens again when I re-open.  We’re going back in time here, because healing has reached a whole new level in my life.  God has breathed life back into the corpse that I had become over the last several years.  And as he breathes I keep finding him bringing me back to where it started.  Back where you last saw me.

I’ve been so afraid…

      1)     To deal with questions of healing.  I’ve cowered under a rock, afraid that you and everyone else would assault me with all your hardest healing questions.  I know you have them.  Everyone does.  How did I get “picked” for the lottery when you or your loved ones have not been “picked”?

      2)     I’ve been afraid that you would all judge me ungrateful and unworthy.  I never, not once, wanted to be healed.  I wanted to go to Heaven.  The most amazing thing God did for me through my illness was to awaken some kind of a heavenly sense.  I was seeing and anticipating heaven with all the invested interest of someone who has lost all hope in this life.   I know I sound hokey, but I could SEE it.  Not with my eyes, but somehow inside I could SEE it.  I didn’t want to get “picked” for healing.  I have been envious of everyone I’ve known who has gone to heaven since then.  In my eyes, they were the ones who were picked and I was the one that was overlooked.  Jesus, why did THEY get to go?

      3)     I’ve been afraid you would judge me short of faith.  That my healing was incomplete because of the fact that I have lived with greatly diminished physical ability and great physical pain since that time.  I have brain damage that causes intense neurological physical pain and loss of memory.  I need high doses of nuerological pain meds three times a day, I can’t remember faces and I am constantly covering the tracks of my many brain lapses.

      4)     I have lived in years of depression.  I exhibited symptom after symptom of clinical depression for somewhere around four years.  James knew.  But I hid it, along with my physical pain, from all the rest of you, even my closest friends.  Gritting my jaw physically and emotionally through one meaningless dead day after the other.

So if all these things are true, if I  was the one that went through the traumas of cancer, if I am the one that was “picked” but not picked” and had heaven imprinted on my heart, if I am the one that have walked since then in enduring pain and medication and often walking with a cane, if I am the one who has hidden my pain and my questions beneath a fa├žade of doing well and getting on with life, if I am the one who has struggled with depression…

…How was it “never about me”?

Because you are the ones who prayed that my life would be preserved.  You are the ones who were watching closely to see affirmation that your God is still working actively in lives and interested in healing and intervening and answering your prayers.  In my fears, I blocked you out.  God has brought me through and worked in my life so that I can point you to him.  So that I can affirm what you’ve always heard, that God is alive and active and working in your life whether you suffer from chronic pain, from chronic depression, from death of a loved one, from hopelessness, from doubts in his existence.  I may have stopped talking, but in that silence God has proven himself to me in all of those things. 

It is time for me to prove him to you in my story.  In my silence I have suffered from so much isolation and feelings that no one understands.  I have been victim to a thought that what I suffer is too sacred to be touched by others.  WHAT A LIE!!  I see it now.

Heaven is still imprinted on my heart.  As I write, my last living grandparent, my Grandma, is dying.  I’ve been warned the phone may ring any minute.  She is so close to heaven’s gates she can probably smell its fragrance and as I think of her approaching, the fragrance that I remember fills my mind as well.  Sometimes I catch a whiff and it allures me.  It was so close.  Oh Jesus, to finally be there!  Free of pain and doubt and the agonies of this world.  To live forever in the purest harmony with Him and my fellowman and creation!

And finally, the last main reason that I have stopped speaking out… Pride, plain and simple. 
As I said earlier there are so many voices out there to listen to.  Especially when it comes to blogs and sermons and books.  It hurts my pride that I am one voice in billions.  You will take what I say, my precious life experience, and you will weigh it against all the other things that you see and hear and encounter.  My precious life experiences, all that I have, lost in a sea of other’s awareness.  Of course you will.  It’s what I do to everyone else.  But I’ve been too proud to let you do it to me.

When Jesus entered Jerusalem on a donkey (what we now call Palm Sunday) the week before he was crucified, the crowds of people shouted and sang and praised him.  His disciples thought that this was a little loud and ornery, so they suggested he should quiet the crowds. 

Jesus’ response. “If they stopped praising me the rocks would cry out in their place”. 

Shame on me for not raising my voice, and for allowing rocks to cry out in my place.  The sea of voices may be loud, but if I don’t join in, then I have refused to take my place in the grand celebration of Jesus Christ, Son of God, Saviour.  If you happen to hear one or two voices louder than others in the clamouring sea, maybe just maybe, you’ll hear mine – and maybe it will begin to catalyse revival in your life so that Jesus can work in you and breath life like you never imagined back into your life, your pain, your wounds.

Imagine yourself in a crowd of people where everyone is speaking and no one voice is standing out to you.  It’s impossible to be impacted by any of them.  But if, if, one person leans over your shoulder and whispers your name in your ear, you will instantly turn with attention. 

So hear me now, like your name in your ear.  Jesus has resurrected the girl that I thought died 7 years ago.  He has breathed into me again and I LIVE.  Despite phantom pain.  Despite severe dark depression, hopelessness and the feeling that I lack of a future.

Its time to stop hiding.  This girl is alive.  And if you stick with me we’ll continue to explore openly this work of God in my life.  

Not because I am so important, but because he wants to do it for you too.

March 02, 2013

Playing Hockey on Public Transit

Today the boys got an education.  They will be starting school on Monday (more on that later), but the kind of education they received today was on appropriate conduct on the subway.  Manipulating the subway as a singular person is an interesting scenario at best, but when you have children it get much more interesting.  So interesting, in fact that it becomes necessary to teach them how to handle some of the chaos for themselves; a.k.a in-the-ear, step-by-step coaching.   Allow me to illustrate:

Standing on the crowded loading deck for the subway, the waiting crowd hears the three-note alert that the subway is about to arrive.  James stands in front holding Jude's hand and I stand in the back with Ari.  I begin to edge Ari in toward James as close as possible because I can see out of the corner of my eye that a single male with a hulking backpack is trying to cut between our six-inch distance.  The doors open and before I can act, Jumbo-Pack throws himself between us, giving Ari and I a mouthful of canvas.  This begins the inevitable slippery slope of trying to gain back the ground we've lost.  It's a losing battle.  Like a hockey player, I thrust my shoulder between two people and use my elbows to make the way for Ari to push himself through, saying "Get in there Ari!  Right now! Push!"  (If I really were a hockey mom, I'd be saying, "Put him against the glass!!!") Ari throws himself in after me, stepping on toes, pinching fingers, slipping between legs... but eventually ending up where he should.  As we come to a rest, still half  a subway car away from James and Jude, I congratulate him on his quick movements and determination.

Why would we do this?

The thing is, you've got to direct your own movements, or else the crowd will do it for you, and you will almost never go the direction you want to.  You will miss your connections, get separated from your group, and if you are a small kid, you will grow up with a new Chinese family and forever wonder about the mother, brother and father you lost that one day on the subway (unless you are stupid enough to think you're the one blond, blue-eyed Chinese kid).  As a result, today we taught them to, how shall we say?... "assert themselves".   Of course we never let go of their hands, but if you're going to hold hands on the subway, you've got to have two parties working in tandem for a common goal.  One dragging the other will not work!

It isn't always about pushing and shoving, elbowing and kneeing.  Sometimes it's good old fashioned muscles of steel, or making yourself about as mobile as the Great Wall.  At another critical juncture today, as we crowded onto a connecting line, I felt one insistent couple trying to push me further onto the car so that they could squeeze in before the door closed.  There simply was no room for them, and they were pushing me into Ari, who would have been slowly suffocated.  So I planted my feet, send down my roots and mustered all my force to provide a steady but determined counter-pressure so that our human wall just had no "give" for them.  I was actually quite impressed at my mother Muskox move - shielding my young and all - and at my surprising show of strength.  Resisting two determined individuals is not an easy thing!

Actually, James and I have frequently pulled this Muskox move.  Shielding the boys between us, we turn ourselves to the outside and make our presence known.

Now here's the real trick.  Its one thing to assert yourself, but it is something else entirely to pretend that you completely unaware of what you are doing.  Innocent as a kitten and twice as cute!  Everyone here pretends that they have no idea they just pushed the air out of your lungs.  I theorize its part of being in a culture that saves face.  We've adopted these mechanisms, but we also have the added element of surprise on our side.  Inevitably the person you are cutting in front of looks to see whose pushing them, and in doing so are astonished to discover a "waiguoren" (foreigner) right beside them.  That provides a moment of hesitation which can be used to your own advantage.

Now before we sound like the pushiest folks around, let me reassure you that this is only necessary when things get REALLY crowded (like public transportation).  I won't say that I haven't quickly angled in sharply to beat someone to the shopping line (just barely edging them out in time), but generally speaking, this is the set of rules I follow:

1) I never cut off old people, kids or the disabled (or, as a Chinglish sign once put it, "crippies");
2) If I have time to wait, I do;
3) If my children are not in harms way, I try to be polite (China polite, not Canada polite!);
4) I assume that all able bodied people are able to handle a little needling from me - after all, if I never asserted myself, I would never get anywhere or get anything done... EVER!

The good thing is that this time around, we will be riding the bus less, riding the subway infrequently, and riding with the boys even less frequently, so please don't fear for our lives!  The bonus to living around crowds is that everyone assumes that everyone is doing it, so everyone expects it.  Assume everyone is being a jerk, respond like a jerk, and everyone is happy!  No such thing as road rage (or subway/lineup rage!), because everyone is too busy pretending they didn't do anything!  Unless, of course, the misconduct was REALLY bad!  For example, a fender bender would probably result in two men screaming at each other on the road (spittle flying at point-blank range), but no one is terribly concerned about it (except for the guys honking who are stuck behind).  They're all in a rush to be the first one to get around the incident.

Strange as it sounds, I have a level of appreciation for this way of doing things.  I'm not saying I love it, and wouldn't change anything about it.  However, it really does take the powder out of your cannon and eliminate the desire to get rip-roaring angry at total strangers in the grocery store if you just assume that they will cut you off in their cart.  Then, when they do, there are no feelings of being personally and morally offended. Perhaps, you might find yourself feeling a little rush of adrenaline as you prepare to do the same thing to someone else, calculating how close you can make the cut before actually making physical contact.  Or, if someone oversteps the line and squishes your pelvis between your cart and theirs in the lineup (this has definitely happened to me), you might enjoy your moment of emphatically hip-checking their cart back a few inches.  You'll enjoy telling the story later on, knowing that they went and told their story about you to their family (probably armed with pictures and videos of you)... and no one is grievously injured!


February 25, 2013

Pig's Feet and Window Friends

During our first grocery shopping trip on Saturday morning, James instantly steered our whole troupe over the "meat" section and picked up a large package of two pigs feet (1/2 of one four-footed pig), as well as a medium sized package of chicken's feet.  

I know, I know, the immediate obsession with feet.  It is rather odd, but I was not surprised in the least.  I can't pretend that I have the same affinity for these animal extremities that James does, but I have at least figured out how to enjoy them.  This is by far the largest hurdle to overcome.  I was however a little surprised when these were the first items to go in our cart, prioritized over such things as bread or milk.  

(On a side note, I was once given two large bags of cold chickens feet in Chengdu as a special gift for my children, being told that they would LOVE them.  Since I was going to be flying back to Beijing that day and I was having a hard imagining Ari and Jude gobbling them down, I re-gifted them to a different Chinese colleague.)  

Back to the story.  My policy is that if James buys them, I am more than happy to let him prepare them.  Today he made a fine soup broth from them using Chinese Five Spice, a main ingredient of which is anise seed, and rice vinegar.  The seasonings were a great combination of sweet and savory, and the end product was very aromatic and flavorful.  Bad quality picture, but good food.

The trick to eating and enjoying pigs' feet, is to reject the notion that you are eating "meat".  The contents are mostly made up of thick fatty skin (ideally shaved of all bristles, but not always), collagen, connective tissue and bone.  There are a few delicious tender morsels of meat, but all said and done, these might be easily collected into a small spoonful.  The general consistency of a well cooked pigs foot is that of gelatin, with scatterings of crunchy connective tissue.  You are probably grimacing right now, as I certainly did before acquiring this taste.  You have to change your mindset, so that the thing that you find least desirable is actually the very quality that you seek! 

For example: North Americans enjoy the thick creaminess of a good Cream of Broccoli Soup, or the different textures that are added to oatmeal by adding nuts or fruit.  So it is with pigs feet that the jello-y-ness of the skin and fat are the best feature.  It soaks up the flavor of the broth the best, similar to how the skin of a roasted chicken or turkey is the best part.  It also leaves a warm, pleasantly full feeling in your belly, from only a very small portion.  

I theorize that it was a "waste not, want not" society that developed an appreciation for food portions that we would consider to be undesirable, such as Thousand-Year-Old eggs (read: rotten egg) which are considered a delicacy in many parts of China.  It makes keeping a nutritionally adequate diet on limited resources an achievable goal.  If you're going to butcher a pig, why not use it all?  The same mindset would be the one to figure out that we can use the natural spoilage process of fermentation to our advantage.  Just as we now purposely spoil grapes to make wine, and many cultures still love eating pigs feet, even when there are other options available to them.

Incidentally, Russian Mennonites (my background) have a traditional mode of preparation for pigs feet which involves pickling.  However, I have never actually encountered it before, so I don't believe it is all that common anymore.  Most Mennonites don't have a regular butchering season like they used to.  The recipe is still found in the Mennonite cookbook however.  

Chinese people hold that eating pigs feet is an especially desirable thing for women, since the consumption of pure collagen is supposed to lend itself to amazingly smooth and healthy skin.  We knew of a Chinese university student in Winnipeg who acquired a whole barrel of pigs feet from a butcher for a steal of a deal when there were none to be found in grocery stores.  Her skin was AMAZING (just kidding, I don't actually know!)

On to window friends...
While we were eating our pigs feet we noticed that Ari was lost in some kind of fantasy world, staring off into space, winking, grinning, posing, posturing and doing jaunty little dance moves.  He seemed very impressed by himself, which was in itself very funny.  However, his utter lack of awareness that he was doing this all in front of his family, who had all stopped eating to watch him, was probably the funniest part.  I knew there was a mirror behind me that he could see himself in, but he seemed to be "making eye contact" in multiple directions.  Finally I asked him, "Ari, just how many reflections can you see of your best friend over there?"  

The total answer, to our amazement, was NINE!  The mirror behind me was set inside a cabinet that had three glass shelves in it, so he could see himself in the mirror and on the undersides of each of the glass shelves.  Then there was the dining room window to the left, the cut glass divider to the entrance on the right, the glass table below and the two fake gold posts of his chair behind.  NINE ARI's!  All dancing and smiling and winking and making passes at each other!  James, Jude and I couldn't stop laughing at him, thereby fulfilling all of his lifelong dreams of having an audience (although the three of us made up only a quarter of that audience!)

Now I know what you are thinking about all the glass I just mentioned.  All I can say is take it up with our interior decorator (aka landlady), who tends to "overdo it".  Oh, and for those of you who remember the crystal ship... its back!  

Before we left last time, I sailed its heavy glassy bulwarks into a dark closet space where it suffered a broken mast during some closet rearrangement.  I silently thanked my lucky stars that I didn't have to face the landlady when she discovered it.  But it seems that sometime in the last 2 1/2 years, some loving hand repaired the broken mast and it is back in its place of honor - on a glass shelf... what else could be more logical? 

February 21, 2013

Returning to the Mainland

For those of you who have fought your disappointment that the Freys fell off the face of planet earth, I bear good tidings of great joy.

The Freys have returned to the Mainland!  As of February 20, we once again find ourselves living in the unexpected spontaneity of a foreign land.  It's not that life in Canada is boring.  Far from it!  We have gained an appreciation for our home and native land that far surpasses what we had before.  Nevertheless, there is something addictive about leaving the house to buy groceries and using a different language to do it.  Something about learning new and strange things, having your language abilities stretched, coming home to share your experiences, and hearing the days events from the rest of your family.

So spread the news!  We're back online, ready to share our observations, stories and lives with you again.  We will resume our former construct of sharing our lives with you here, but for today there needs to be a little back story.  Last you heard was that I don't remember faces anymore, and suddenly I am writing from China! 

The road back to China has been festooned with a lot of emotional hurdles and plenty of moments of reflection.  Many people have asked us if we are excited to be returning, but have been surprised when we answer with a carefully considered, "Um, yeah, I guess so".  The natural assumption is that, given the circumstances under which we left and the obvious attachment we had to China, we have spent the last 2 1/2 years biding our time, emailing organizations and pounding on the doors of heaven just for the hope of going back.  This is entirely untrue.  The truth is that this has been a journey of a long year to bring us to the place where we are ready to return.

I believe that this is a healthy thing.  If we were returning with great big dreams of picking up where we left off, as if nothing had changed, insistent that we had found our life's purpose in China (blah, blah, blah), we would quickly catch that horrible disease called "disillusionment".  Our purpose is found in our Creator, who has seen us through some tumultuous times in the last few years, and it is in Him that we must rejoice (whatever the circumstances).  Not in a glorious return.

This is the real story.  One year ago, I was still living with the feeling of a death sentence over my head.  My ambitions for a future had been fried away by radiation, and I didn't see much purpose in rebuilding them.  I decided that if God had brought me to this place, he had a reason for me to be there.  And that is of course true.  The problem is that God never stands still, he is always moving.  I followed him through the Valley of the Shadow of Death, and having reached a grassy knoll called "Humble Existence", I decided that was all I was ever going to have, so I might as well learn to enjoy it.

This made James rather upset with me (in a gentle sort of way, I will add).  Conversation after conversation, he would prod me, asking me what it was that I wanted for my future.  I had no good answers, and when I realized how upset this made him, I couldn't even fake okay answers.  As he came close to finishing up his Masters Degree and we explored options, I blithely stated that I would go wherever James led and be happy there.  PhD at Yale?  Sure.  Agriculture position in Belgium?  Alright.  "But what will you do Jess?", he would ask, which led to a shoulder shrug.  My ambitions had been so thoroughly seared away.  Why try?  I  could live out Micah 6:8 anywhere in the world doing anything. "He has shown you oh Man, what is good.  And what does the Lord require of you? To act justly and to love mercy, to walk humbly with your God."

James continued to hold out for a future that had us working together, doing something that made us excited.  Much as I wanted to tell him to give up on that, I began to see that I had to at least explore the idea of doing something again, even though the idea made me want to soil my trousers (and not in James' agricultural sense).   The fear of stepping out on a limb and being disappointed is a cruel dictator.  But my attitude was beginning to take a toll on James' morale, so something had to be changed.  In a time of prayer, I felt convicted that I was reneging on the vows that I had made to James: to be his partner in the adventures of our lives.  By settling for the trailing, purposeless spouse with no opinions about anything, I was essentially ditching James to do all the adventuring by himself.

That was an uncomfortable revelation, but having it brought into the light like that started a slow cascade of release.  How like the Holy Spirit to turn the light uncomfortably on one's dark corners, and then leave refreshingly clean spaces behind (given that we are willing).

From that point on, without much effort, things began to fall into place.  Our old positions with opened up again and unbelievably (to me) we were invited to re-apply.  It was one thing to be open to "something" and another thing entirely to contemplate going back to the same thing.  It was far beyond the realm of anything I had ever thought possible.

So here we are now, back in Beijing.  The road back has not been easy; full of high and low moments.  One of the only symptoms I had pre-diagnosis, was momentary lapses of random deja vu mixed with some mysterious smell that was only evident to me.  This was followed by intense confusion as I tried to figure out what it was that I was "remembering".  But when there was no memory to connect it to, the confusion would spread even farther.  Where am I?  What am I doing?  Who is this person I'm talking to? etc.  I usually figured I was overtired and would then go to bed.

Needless to say, one of my arch enemies in our preparation to come back has been deja vu: only this time, there is a good reason for it.  I HAVE done all these things before and I HAVE smelled these smells before.  However that doesn't prevent me from experiencing a panic that rises from my gut and tries to choke me when I find myself back in a place I've been before.  When I smell China again and when I wake up in our old apartment again.

The road back has been full of these moments.  The peak moment (completely unrelated to our return) was when I visited a good friend of mine at the hospital a few weeks back.  She had been diagnosed with a brain tumor (benign thankfully) and was recovery from surgery.  She was in the same recovery room as I had been post-biopsy, staples in her head and very disoriented.  It felt a bit like having an out-of-body experience, standing by my own bedside 2 1/2 years ago.

God has not been content to only heal my body, he is taking me back to the point of wounding and touching those places as well.  Apparently it is not his will that I live with psychological scars.  We are simultaneously going back to the origins and also starting something totally new.  Before we left, James' Grandpa felt that he needed to impress us with the words of Isaiah 43:18-19.  "Forget the former things; do not dwell on the past. See, I am doing a new thing!  Now it springs up; do you not perceive it?  I am making a way in the wilderness and streams in the wasteland."

So the experience of returning (so far) has been one of mixed emotions.  I smell lamb kebobs (a wonderful smell I assure you!) and I rocket back in time.  But then I am reminded that these are the smells of lamb kebabs roasting today.  They are not the ghostly smells of kebabs that I remember smelling from my hospital room back in 2010.  (Fittingly, we ate lamb kebabs yesterday for lunch and it was a wonderful gift to my taste buds!)

So far, the best vehicle for experiencing newness has been the wonderful observations being made by Ari and Jude.  They remember a lot of things when they see them, but when we were last here, they just took it for granted that things are the way they are.  Now we get to hear their thoughts as they experience everything, almost for the first time.  They also loved the lamb kabobs, in spite of the fact that their mouths and lips were burning from the spice.  They gobbled it down and Jude even finished off Ari's left over rice.  There is also an added element of a more mature analytical approach.  Ari commented "I'm glad that I have such good cotton in my pillow.  Afterall, I'm sure you know that China is the world's largest cotton producer!"

This morning the smog has cleared, the skies are blue, the sun is brightly shining and there are birds singing.  We went for a long walk to find out if any of our favorite little breakfast vendors were still around.  James was set on eating dofu nau and you tiao (translated tofu brains and oil sticks!), but the place appears to be deserted.  Not surprisingly a lot of things have moved/changed.  For example our local market has been shut down which we are quite disappointed about.  It was the best outlet for street foods, fresh produce, clothing, phone cards, strange pets, kimchi, dried goods etc.  But then on the other hand, we know for a fact that the garbage can outside our door is the same one and saw the same old sign prohibiting saxophones from playing on a neighboring apartment building.

Most of all, I am enjoying a regained sense that our family is on an adventure together again.  Almost as though we are sharing an inside joke with each other.  This afternoon we are off to tour a potential school for the boys are we are looking forward to it.

Farewell for now, and we look forward to sharing great stories with you all!

April 24, 2012

Putting a "Face" on Brain Damage

Back in December my turn finally came for a long awaited Neuro-Psychological test to assess if I had lost any brain functioning over the course of my treatments. I was on a waiting list for 10 months, with the dim knowledge that, when my turn finally came, I would be subjected to two days of cognitive tests. A walk in the park!

As you can imagine, as my turn approached, I began to wonder exactly what kinds of tests I would have to perform (for two full days), and was also quite curious as to what they would have to say about me. I simultaneously felt quite smug in my personal knowledge that I felt that I had not lost anything, (save for a few cubic centimeters of brain matter), but also a little nervous that they would rock my boat and tell me something I didn't want to hear.

I imagined that there would be a fair amount of spacial and memory testing. With dread, I remembered how much I hated these types of tests back in Gr.5. Flipping and rotating 3D images in my head or recognizing and extrapolating complex patterns and then filling in my final choice on a bubble sheet are not my idea of fun. My short term memory has always been lacking, but even I have noticed an increased deficiency since my tumor treatments.

I also didn't know how much of these two days might involve sitting on a psychiatrist's couch and being prompted to spill my guts so that they could probe into my psyche.

Well, my predictions were not to far from what actually happened (which surprised me; I often make mental predictions to myself, but expect to be surprised). The first "day", which only turned out to be a few hours, was spent first talking to the psychiatrist, then filling out bubble sheets. The psychiatrist asked me deep probing questions about my adjustments, my mental processes, my relationships to others, my views on life, etc. (no couches!  Boo!). Then I was turned over to the bubble sheet questionnaire to answer more questions of the same variety worded in different ways. Did I feel understood by those around me? Did I ever have overwhelming urges that I couldn't contain?  And so on. I tried not to blow through the questions, reminding myself that I would only benefit from examining myself and being honest.

The second day, I spent many hours in a room with the psychiatrist's assistant, who performed numerous other tests on me. Every test started off very simple, then got harder until you could no longer perform the task that was required. Lists of words to remember (read only once). Word associations to remember (seeing them only once). Patterns to solve. Mental math problems. Social/common knowledge questions. Reading ability. Building patterns with colored blocks. Categorization abilities. You name it! A timer counted all my response times.

At the beginning of each one, I had to remind myself that they used these tests to establish ALL levels of mental ability. Even a child would have found some of them to be very simple. But as they progressed in difficulty, I got slower in my answers until eventually I had to say that I didn't know the answer. The assistant reassured me that this is how it was supposed to happen. Here are some of the more memorable tests (no pun intended):

1) I was given 30 seconds to study a nonsensical line drawing, then asked to reproduce it from memory. Several tests later, I was asked to reproduce the same drawing (much harder given the shift in concentration!).

2) After being read a list of twenty or so objects, I was asked to repeat them back and to categorize them. I was given several tries at this one as I have always been very bad at remembering lists.

3) Given a letter of the alphabet, I was told to rattle off as many words beginning with that letter as I could before the timer stopped. At first I thought this would be a breeze... until I got going. I quickly realized that my pitfall was that I would get stuck on themes. For example, the letter S got me stuck on two themes. Out came "scientific, sarcoplasm, sarcomere, salicylic acid..." Realizing how dumb the words were that came out of me, I couldn't help but start laughing! And with the laughter came a new theme, this one far more creepy! "Sad, sadistic, Satan..." (more laughter and thinking to myself "why can't I think of more simple words than this, like... silly?") This train of thought brought out "silly and stupid". The end result was that I spent a lot of the time laughing at myself, and didn't get a lot of words out. The human anatomy theme continued to dog the rest of the letters they gave me. "Anatomy, anabolic, anaplastic, anemia..." The researcher's inevitable question was to ask what my undergraduate degree was in.

4) Given number and letter combinations, I was asked to repeat them back and/or reorder them. The researcher read them to me once. When it started with 4E this wasn't too hard. But getting up to something like 5j9pu7, it was a little harder. List the letters in ascending order first, then the letters in alphabetical order: 5j9pu7 became 579jpu. You can imagine that hearing it only once, this was quite difficult. I managed to get up to combinations of 8 before I had to say that I couldn't go any further.

5) Given similar number combinations I was told to remember that combination while verbally subtracting three from a number they would give. For example, I was told to remember A9T6, then starting with 76 talk out loud subtracting three. ...76, 73, 70, 67, 64, 61, 58, 55... then STOP! and tell the researcher the number that I was supposed to remember. The number I had to remember increased by one digit when I showed that I could continue. I think I got up to 7 digits before I had to stop.

6) Questions of general knowledge or educational level. Who is the President of the United States? What year did Canada become a country? What is the distance from the earth to the moon? What is the circumference of the earth? Who wrote Alice in Wonderland? Etc. I was pleased with myself for only missing two of these questions. But seriously now, is the circumference of the earth really considered general knowledge? I was, however, quite bummed out at forgetting that Sir Arthur Conan Doyle wrote Sherlock Holmes.

I walked away feeling very good about myself... which made the results a little shocking to me! While the analysis determined that I am functioning at a high level of cognitive ability (relatively), and that I am well-adjusted considering the life changes I've had, it also revealed some other things. Apparently, it is because of my pre-existing higher level of cognition that I have been able to cover up certain deficiencies that have come about from receiving brain damage.

Brain damaged. Of course they didn't say it like that, but that's essentially what it means. It felt like a fist in my stomach to read that in the Neuro-psychiatrist's report. Even though the vast majority of the report reinforced my smarts, my superior emotional adjustment and my positive attitude, it shook my confidence to read that I have used my intelligence to cover up my areas of weakness. As though I were some kind of con artist, fooling everyone around me. But even more shocking was when I found myself thinking, "How did they know?". It is true that I have been using my brains to figure out ways to cover my weaknesses, not in a deceptive way, but more as a kind of coping mechanism and technique to "save face."

There is a trace of irony in me trying to "save face", however, as recognizing faces in particular is one of the ways that my mental abilities have changed.  To some degree, I have lost is the ability to recognize new faces!  It now takes a few interactions and significant associations before I can remember a person's face. Until I recognize their face, I will only recognize someone by what they are wearing, or by the conversation I had with them. But if they change their clothes (something people tend to do) or don't give me any indication of prior interactions (as in, "Hi, I'm the guy who talked with you yesterday about rubber plantations in pre-Independence Malaya"), I have no idea who they are.  (This shouldn't be read as a request to always wear a colour-coded jumpsuit and begin all conversations with a long preamble.)

This makes it interesting to work at a coffee shop where people are constantly streaming past me. There are people who come in every day and order the same thing, but as far as I am concerned they are a new person every day. I need to have meaningful interactions with someone (sometimes several) before I will remember their face (unless it is outstanding in some way: monstrously ugly people get remembered). This doesn't apply to people I already know.  If there is something exceptionally striking about a person, I will remember their face.  I am often able to remember people if I pick out facial features on them that look like someone else that I already know.

A few weeks ago, I read a BBC article which talks about the area of the brain that helps to recall faces. Lo and behold, above and behind the right ear (right where my hole now lies) is where the brain stores memory of faces. Here is the link to the article:

It was very enlightening to see that for all of my feelings of stupidity, there is a justifiable reason for it.  So I have figured out other ways to either determine if I know people or, if all else fails, to hide my ignorance.  By far the most embarrassing situation is if I have had a meaningful interaction with someone (especially if I've had multiple meaningful interactions), but still forget their face and greet them as a total stranger (or, worse than that, not greet them at all).  Imagine yourself saying "Hi, welcome to Starbucks, Stranger," when you just saw that person an hour ago.  During my interactions now, I find myself watching and listening carefully for an indicator of who the person is.  Often it is something very subtle that clues me in (good old body language to the rescue), and if I am successful, that person has no idea of what has been going on in my head.

Its never boring being me!