492. I love Mondays

Part of my New Life is that I love Mondays!! I usually have a Train + “Run” double-header.  I see Trainer D, who plans accordingly, knowing that I’m going to use the AlterG right after I see him, and then I hang out with Coach R.  I took this pic post “run” in front of my locker.

But I like weekends, too.  It’s just that weekends are when “real life” happens more so I have to work harder to apply everything I’ve learned at Rehab/The Gyms in order to participate in things and actually enjoy them.  It’s a work in progress, but we’re getting there.

Last week:

Coach R:  What are you guys doing for Father’s Day?

Me:  We’re taking Daddy to lunch, and I’m not going to antagonize my father.  He gets weekends off, anyway.

[pause]

But you know, accidents happen.

 

Just kidding.  I love you, Dad!  This is one of my favorite posts.  Before I knew I had PTSD I was just really uncomfortable especially around Christmas.  At that time we went out to dinner with Ai Ai and Timmy and the kids, but I was on High Alert the whole time and spent the entire dinner 2 inches from Daddy’s elbow.  He was seated on my right, which I do much better with, since I use my left eye’s input much less, so when he or anyone is close to me on the left I automatically feel threatened.  Anyway, I peeled my chair away from my dad briefly a couple of times, but on those occasions I shoved it up against the wall so my back could lean against it and I could have a full view of the whole table.  Our waiter was so nice he pretended not to notice.  🙂

In this post, Dad makes me feel better when I really needed it.

472.  Thy Rod & Thy Staff

Originally posted in February 2015

 

Dec 2013. Tanpo and I at the bank getting LHC set up. I like to take selfies when he’s not looking and send them to Mommy.

One of my favorite posts ever is the one when I explain how naughty I was when I woke up and would say anything to delay my parents’ departure for the night. One time I was like, Daddy, tell me that thing again about ‘Emmanuel, God with us.’”

18. Dad, Tell me that thing again…

Heh heh. That’s right. I totally leveraged poor Daddy’s devotional thoughts as a stalling technique.

But I wasn’t always stalling.   Sometimes I had honest questions or requests, like when I asked him to read Mark 4 to me.

123. Don’t You Care? | This was the first time I heard myself play the piano (I’m still sitting at the keyboard) and I heard what I sounded like.

I continued asking things when I came home and was trying to decide whether or not I could still believe the Gospel. For a while I thought of difficult theological questions and would ask Dad about them just to see what he’d say.

Side note: A friend pointed out to me recently that the fact that I have a Dad who is in a position to answer hard questions and, in fact, welcomes them, is something to be truly thankful for. And I am.

It was the non-theological questions that I stopped bringing to him. In the hospital when I was going through my “quiz” reality-testing phase I’d ask people all sorts of things about the logistics of the past month+ (when I had supposedly been asleep), things like, Hey, Mommy – what was in my fridge/cupboard? What kind of shower curtain do I have? Hmmmm?

So one day I said, Daddy, how did you get into my apartment?

Poor Tanpo looked immediately stressed out and said feebly, Mommy?

I saw his distress and was immediately like, Don’t worry, Daddy, never mind. And I subjected only Mommy to quiz time after that. I gave Daddy a hard time in other ways.

But one night in Vibra (the 2^nd hospital) I didn’t ask any questions. But Daddy saw that I was scared so he pulled a chair up to my bedside and talked to me about Psalm 23. …Thy rod and thy staff – they comfort me…he quoted.

I had just begun to wake up and was terrified and uncomfortable. Dad told me, The shepherd’s rod and staff signify the Lord’s power and authority…Don’t be afraid, Sweetie.

Sniff.

That night I was so terribly cold but unable to use my voice to tell anyone and lacked the motor skills to find and click the call button for help. So I would just lie there in my bed and try to use the pillow that had been wedged under my weird left shoulder to try and get warm. But I wasn’t truly comfortable until I had a dream that I was snuggled up under a blanket knit with Psalm 23 on it.

As the weather has been so cold lately I have remembered this instinctive desire to curl up under my fluffy comforter and be warm. It’s also my instinct to retreat from the world as my Recovery becomes more and more public. But it’s too late for that – I chose this lifestyle with my eyes open, and I love it even though sometimes I still get scared. When I do, the Comforter, who brings all things to remembrance, assures me that His power and authority rule everything – so I’m going to be just fine.

But the Comforter, who is the Holy Ghost whom the Father will send in My name, He shall teach you all things and bring all things to your remembrance, whatsoever I have said unto you.

 John 14.26

39. That’s good remembering

HOW did this happen? My baby is so grown up. Boo Boo and Lu Lu ❤

Originally published Nov 2012

I was talking to my friend, F, a long time ago and I referenced some obscure detail in our past which prompted her to say, “As we say in Kindergarten,” (she’s a teacher), “‘That’s good remembering.”

No one had any idea what I was going to remember, if anything, when I woke up. It turns out I remembered quite a lot, actually, including everything leading up to me collapsing at work as well as stories from my childhood. I remembered other people’s childhoods, too, e.g. one of my “reality quiz” questions was to make Ruth name all of her siblings in birth order. (She’s number 2 out of 9). Another time I made her name her buddies in “the buddy system.” Growing up the older children were partnered up with a little one to help get dressed in the morning and assist in general. Ruth named a couple of her brothers and asked, “Did I get it right?” Yeah, she got it right.

There’s an old picture in E&R’s guest room of me holding Hannah (Ai Ai and Tim’s eldest) when she was a baby. I napped there during out last visit and looked at this picture for a long time. We were both several years younger. I did not have a hole in my neck and I’m perched on the bar stool holding Hannah in a way I could not pull off now, but our happiness in each other’s company has not changed. I remember that day – we were visiting them in their 2^nd house and Hannah had just woken up from her nap.

Remembering is a blessing, but it can be sad, too. There are lots of things I’ve realized only I will ever remember and I wish a lot of these things hadn’t happened in the first place. I should mention that I may be able to remember the shoes you wore to an event in 1994 but I cannot be depended on to tell you an important piece of information you shared with me an hour ago. Sometimes Mom or Dad will say something like, Remind me to plug in my phone, or Remind me to call So-and-So. 9 times out of 10 I forget to remind them. That is not “good remembering.”

When I was really sick one thing I was so grateful for was that the verses I had stored in my memory made their way out of my subconscious and were a great comfort to me when I was still unaware of what was happening and scared stiff. I used to carry a pile of index cards around in my back pocket and studied the verses on them when I had a moment. The verses that had helped me as I wrestled with my spreadsheets at work also helped me when I was too ill to know what had happened to me and why I lived in the hospital. Verses from my childhood also unlocked themselves from my heart – I’m talking about really simple stuff. I was probably four years old when Mommy had me memorize Psalm 23 so I could recite it for Tanpo when he came home from a business trip, but now at 30 years old I dreamed that I was snuggled under a blanket with Psalm 23 embroidered on it when I was super cold in the hospital but couldn’t tell anyone yet.

When I got to the 3^rd Hospital and grew accustomed to waking up and keeping a schedule I was extremely disturbed at the lack of alarm clock in my room. It did not occur to me that I lacked the motor skills to use one had there been an alarm clock on my nightstand, nor could I read or write properly, so I couldn’t read my Bible or write in my journal even though Mommy brought them for me. I could, however, press the buttons on my Kindle so that it would read to me. It would read John 15 to me in its robotic voice, and I’d mouth the words as I tried to walk in PT to try and distract myself…and also because I wanted to walk SO badly: “If you abide in me, and my words abide in you, ask whatever you wish, and it will be done for you.”

Note the contingency: “…if you abide in me, and my words abide in you…” That contingency kept that verse from being the magic verbal elixir I was hoping for, and there’s also the matter of God’s will and greater glory I was not factoring into the equation. But anyway, I haven’t really mastered “abiding” quite yet, but I figure that memorization is a good start. And since my vision isn’t so great right now I’m forced to rely on remembering more than I used to. So the fact that I can remember (albeit imperfectly) is wonderful.

123. Don’t You Care?

This was the first time I heard myself play the piano (I’m still sitting at the keyboard) and I heard what I sounded like.

Ji read the account of Peter walking on water on Sunday morning.  At least that’s what I think he read – I’ve had hearing loss so I often fill in the blank with what I think was said.  It reminded me of a favorite passage in Mark 4 – the one the phrase, “Peace, be still” comes from.

Tanpo read the Scriptures to me at night before he and Mom would leave for the evening.  I would often request something and I remember requesting Mark 4.  We never talked about it, but I remembered this since I’ve enjoyed this passage for years and I had a deep desire to hear it again.  Long after my parents left and during the days that followed I’d lie in my bed and think, “He cares.  He cares.”  Because that’s why I wanted Dad to read Mark 4 to me.

First of all, it’s the Lord who suggests, “Let us cross over to the other side,” (Mark 4.35).  Changing locations was His idea in the first place, and idea execution is a non-issue for Him.  I like to remember that me being disabled was His idea in the first place (I was initially a very unwilling participant) and He’s the One who’s going to see this thing through.  Second of all, I like this account because the disciple’s question is so terribly honest.  The wind and waves are crashing around them, and the Lord is asleep – asleep – in the stern.  So they wake Him and say, “Teacher, do You not care that we are perishing?” (Mark 4.38).

Can’t you hear their tone of voice?  They’re like, Hellooooo – we’re all gonna die.  I know that tone of voice since I use it often myself (at least mentally).  It’s not the amazing power the Lord demonstrates as He calms the storm that grabs me, it’s the fact that such a raw question made it into the Scriptures that made me request this passage in the hospital.

In answer to their question, the Lord addresses the situation immediately.  I would love for my situation to be addressed immediately, too, but we’re not working on my timeline.  He then asks the disciples, Where is your faith?  Sometimes I can’t find mine.  Maybe I left it in the pocket of the jeans I was wearing when my brain bled.  Or maybe it is in storage with the rest of my things in that garage in OR.  But no, it’s still with me – along with my family, it’s one of the things I didn’t lose that day.  I just forget sometimes and need to be reminded that He cares.

Hebrews 11.6 But without faith, it is impossible to please Him.

Psst – read this, too!

63.  Everything is *Completely* Under Control

473. Out of the Mouths of Babes

Karine reciting Psalm 23 to me at OHSU 4.29.11 (the white things are my knees)

 When I was rewarded with a couple months of R&R at Boo Boo and Timmy’s house last year after we went to Oregon I got to hang out at the End of Year school activities with my children. Best. Vacation. Ever.

One day we went to a “Speech Meet” where my “son” proceeded to wow the crowd with his animated rendition of an old fable. I could barely contain myself bc I was so proud. But I tried not to embarrass him like how I tried to exercise restraint at H’s Spanish play the week after.

But when a classmate of his stepped up to the microphone and recited Psalm 23 with the deliberate enunciation of a good speech therapy student (I haven’t mastered that, BTW), I lost it. He was on, Yea, though I walk through the valley of the shadow of death, I will fear no evil: for Thou art with me – thy rod and thy staff they comfort me. And I fought hard to swallow the tears bubbling up from my tummy.

The terrifying confusion that marked my inpatient days is long over but I still feel the echo of fear bc its sound was so deafening the first time. One night in the 2^nd or 3^rd Hospital (I was still too loopy to know where I was) my friend A came to see me with her little boy, M. He had drawn me a picture of a shepherd guiding his little lambs across some hills and A told him, Sing Psalm 23 for Miss Ning.

Even though I can’t remember where we were I do remember preparing myself mentally to hear the sweet strains of The Lord is My Shepherd – you know, the one from the commonly used hymnal affectionately known simply as the Red Book. But M is the son of two talented musicians and has grown up with the Praise & Worship genre as the soundtrack of his life. He has been well trained and blessed hereditarily so he unhesitatingly launched into a rousing chorus of Matt Redman’s “Never Let Go.”

I was startled at first because I had been expecting the gentle melody of the familiar old hymn, but even then my mind shifted gears rapidly and I enjoyed M’s spirited rendition of this favorite praise song.

These are the lines that lead up to the chorus:

…and I will fear no evil

For my God is with me

And if my God is with me

Whom then shall I fear?

These were words I needed to hear desperately. But lately it’s the opening lyrics that have really captured me:

 Even though I walk through the valley

Of the shadow of death

Your perfect love

Is casting out fear…

 

I wrote this in July 2014:

One of the hardest things I realized before I went to Oregon was that death had been very near to me on that day. (I had largely blocked it out.) I refer to that period (when I was asleep) as “The Valley” and when I heard this verse of the song it actually made me wistful for it. The Valley was absolutely terrifying but I was able-bodied in it. I walked normally etc. and I actually began to miss it bc it was the last thing that “happened” before I woke up and found myself in this situation.

From 388. Vespers

388. Vespers

 

It’s taken another 6 months but I’m getting more comfortable with the idea of The Valley, and even with the idea that I actually miss it. I’ve had a hard time believing that The Land of the Living is for me and my time in the Valley is why. But I’m done skating around it. It happened. I walked through The Valley, and I learned to walk after I woke up, too. And I was never alone.

Matthew 21.16 …out of the mouths of babes…thou hast perfected praise…

Psalm 8.2 Out of the mouth of babes…hast thou ordained strength…

472. Thy Rod and Thy Staff

Dec 2013. Tanpo and I at the bank getting LHC set up. I like to take selfies when he’s not looking and send them to Mommy.

One of my favorite posts ever is the one when I explain how naughty I was when I woke up and would say anything to delay my parents’ departure for the night. One time I was like, Daddy, tell me that thing again about ‘Emmanuel, God with us.’”

18. Dad, Tell me that thing again…

Heh heh. That’s right. I totally leveraged poor Daddy’s devotional thoughts as a stalling technique.

But I wasn’t always stalling.   Sometimes I had honest questions or requests, like when I asked him to read Mark 4 to me.

123. Don’t You Care? | This was the first time I heard myself play the piano (I’m still sitting at the keyboard) and I heard what I sounded like.

I continued asking things when I came home and was trying to decide whether or not I could still believe the Gospel. For a while I thought of difficult theological questions and would ask Dad about them just to see what he’d say.

Side note: A friend pointed out to me recently that the fact that I have a Dad who is in a position to answer hard questions and, in fact, welcomes them, is something to be truly thankful for. And I am.

It was the non-theological questions that I stopped bringing to him. In the hospital when I was going through my “quiz” reality-testing phase I’d ask people all sorts of things about the logistics of the past month+ (when I had supposedly been asleep), things like, Hey, Mommy – what was in my fridge/cupboard? What kind of shower curtain do I have? Hmmmm?

So one day I said, Daddy, how did you get into my apartment?

Poor Tanpo looked immediately stressed out and said feebly, Mommy?

I saw his distress and was immediately like, Don’t worry, Daddy, never mind. And I subjected only Mommy to quiz time after that. I gave Daddy a hard time in other ways.

But one night in Vibra (the 2^nd hospital) I didn’t ask any questions. But Daddy saw that I was scared so he pulled a chair up to my bedside and talked to me about Psalm 23. …Thy rod and thy staff – they comfort me…he quoted.

I had just begun to wake up and was terrified and uncomfortable. Dad told me, The shepherd’s rod and staff signify the Lord’s power and authority…Don’t be afraid, Sweetie.

Sniff.

That night I was so terribly cold but unable to use my voice to tell anyone and lacked the motor skills to find and click the call button for help. So I would just lie there in my bed and try to use the pillow that had been wedged under my weird left shoulder to try and get warm. But I wasn’t truly comfortable until I had a dream that I was snuggled up under a blanket knit with Psalm 23 on it.

As the weather has been so cold lately I have remembered this instinctive desire to curl up under my fluffy comforter and be warm. It’s also my instinct to retreat from the world as my Recovery becomes more and more public. But it’s too late for that – I chose this lifestyle with my eyes open, and I love it even though sometimes I still get scared. When I do, the Comforter, who brings all things to remembrance, assures me that His power and authority rule everything – so I’m going to be just fine.

But the Comforter, who is the Holy Ghost whom the Father will send in My name, He shall teach you all things and bring all things to your remembrance, whatsoever I have said unto you.

 John 14.26

12B. Codebreaker

Originally published October 2012.  Don’t worry – the Tans are not going through Medical angst/uncertainty right now.  It’s business as usual.  I just really like this post 🙂

One of the little known side effects of my illness is that I was required to be a codebreaker as soon as I woke up.  This happened when people had to say “no” to me but felt really bad about it so they framed it in nice words and I had to read between the lines.

One of my favorite examples is when I started to wake up in the 2^nd Hospital and wanted some fruit so badly, but the sign on the wall said “NPO” and told everyone that both food and liquid were contraband items in my world.  This did not stop me, however, from hitting up passers by for some ice chips or fruit.  I though a lot about that part in Pride & Prejudice (ch. 55, I think, for you Austenites out there) when Georgiana plays the reluctant hostess at Pemberly and does her duty by serving pyramids of fresh peaches, grapes, nectarines etc. to Lizzy and other guests.  I wanted some fruit in the worst way and asked Mommy for some.  It pained her to have to deny me something that I wanted so much, and Mom said some very loving and sad words that I mercifully don’t recall.  I only remember the moment when I summarized, “So…‘no’ to the fruit.”

Now that I’m better, I’m the one who speaks in code.  Here is a sampling for my family’s reference:

• Ed is baking cookies. = I need baked goods NOW.
• Ed thinks you’re the cat’s pajamas, Mommy. = I love you, Mom.
• Ed and I are going to go tell Tanpo a joke. = I’m going to go bother Dad.
• Ed is sitting on the sofa with Tanpo while he “watches” (naps during) the PBS Newshour. = I really, really, really don’t want Dad to be sick.

99. Mirror Image

One of my favorite passages in all of Jane Austen’s work (besides the fruit pyramids in P&P) is the part in Persuasion where Admiral Croft describes Sir Walter Elliott’s dressing room.  Background:  Sir Walter is a handsome man who is extremely vain and rather silly.  He is old enough to have three adult daughters.  Sadly, his wife died a long time ago, and any sense of economy died with her.  As a result of his financial ineptness, Sir Walter is forced to “retrench” and so relocates to Bath and rents out his estate to hopefully get out of debt.  Admiral Croft becomes his tenant.

Admiral Croft visits with Anne Elliott, the second daughter of Sir Walter, and the heroine of the story, and the Admiral tells her one of the first things he did upon taking possession of the house was to move all of the looking-glasses out of Sir Walter’s dressing room.  Your father must be a rather dressy man, he tells Anne, There was really no getting away from oneself!

I love that line.  It speaks to how silly/vain Sir Walter is and how different the Admiral’s lifestyle is.  I often feel like I’m in Sir Walter’s dressing room when I’m at therapy because at every hospital, the gym is lined with mirrors.  When the mirror on the wall is too far away, they have full-length mirrors on wheels that they can roll right up to you so you can see yourself up close.

I used to look in the mirror in my room or in the gym at RIO (3^rd Hospital) and ponder the scar on my neck and how my hair was sticking out in funny places.  There was a large shaved patch in the back where they operated, and a small pokey thing in the front where a drainage tube once resided.  I would look at these things and think, Okay, maybe I did get sick after all.

I wasn’t sure since I had been asleep for the worst of it (thankfully).  I still don’t have the feeling of being “present” at the events I’m told happened.  Instead of viewing my own timeline as if I’m looking at my reflection in the mirror, I see pictures/videos, or read updates written by Tanpo or Ai Ai.

Tanpo has been helping me edit my “Memoirs” recently and he commented on how short the OHSU and Vibra (1^st and 2^nd Hospitals) chapters are.  Well, I was kind of asleep, I explained.  He suggested that I read up on what happened so I’m more aware of just how much the staff at those facilities did for me and can write about it.  I recently read through Ai Ai’s Facebook updates and I was like, Oooh – what happens next?!  And when I came to the part where she had to go home to her family after visiting me in Vibra I was sad.  I felt the same sadness I felt but couldn’t express when we were living that moment and I told her, “Quick – eat some cookies – chew fast!”  I was still pretty loopy and was concerned the poor girl was too skinny.  So I wanted her to eat some cookies in my presence before she got on the plane.

Last week I commandeered Tanpo’s phone in the car and scrolled through his picture gallery.  There were lots of pictures of my hospitalization I had never seen before.  One of them caught my attention because there was a skeletal face with one eye open and my hair on its head, body propped up weirdly in a chair.  “That can’t be me,” I thought.  And when I scrolled to the next picture the skeletal face looked even worse (there was a strange grimace), but the face was undeniably mine.  “Okay, that’s me after all,” I thought.  I will not be sharing either of those pictures with you – you can thank me later.

A few weeks ago I had lunch with some friends and I made a cavalier-sounding joke about the onset of my illness.  “You don’t know what it was like,” J told me in a jokey chastising sort of voice.  Her statement was funny at the time, but it’s also terribly true.  I really don’t know what it was like even though it happened to me.  I’m dependent on what other people tell me or what they recorded at the time.  Tanpo was the primary documenter, but I’ve read Ai Ai’s updates more recently.  All you need to know about that time period is summarized in three words:  e-coli and spinal tap.  ‘Nuff said.

I showed those pictures to Mommy later that day, and I totally cried over that first one that I didn’t think was me initially.  I cried because it looked sort of gruesome (even though there was no blood or even swelling), and also because I didn’t think it was me.  I have no recollection of any such scenario, and in the pictures I’ve seen thus far I’ve either been more awake or fully asleep – not this strange in-between state.  But then Mommy scrolled to the next picture (the one that I thought got worse) and told me, Look – you’re really happy here.  And sure enough, once we zoomed in I could see that the scary grimace was actually a facial contortion meant to convey happiness.  I can understand why.  The bandage on my neck indicates that my trach had been removed, and Mommy is standing next to me with a paper cup presumably full of ice chips.  My mouth is probably half open so it can receive the spoonful she is about to offer me.  According to my sister’s account, I had been asking for ice chips for at least 5 days.  The relief I felt when Mommy was finally able to let me suck on some ice was wonderful – I remember that part clearly.  So even though that picture is painful to look at I’m glad that moment was captured.  It’s characteristic of this whole experience – hard to look at, but joyful.

Another favorite mirror image: (I was learning to tie a ponytail.  Can you tell?)

220. I’ve Got this

 

76. “You didn’t do anything wrong.”

Random pic:  Doesn’t Ezzie look sweet?

 

Originally posted Dec 31, 2012

I had some major timeline confusion when I woke up.  Okay, I had all sorts of confusion that was not limited to the timeline.  I asked if I had really gone to Africa, if I had met with my elders in MD (yes) to ask if I could be a missionary and if I had met with my elders in OR (no – the meeting was scheduled for Monday.  I got sick on the previous Thursday).  I confidently told Mommy I knew we were on a train that was circling the city – proud that I had figured out why I was feeling the way I did.  I told Ai Ai all sorts of things I shouldn’t have told her, and this was also the time I’d say anything to delay my parents’ departure for the night.

The problem was that even if I was making something up I believed what I was saying was the truth as soon as it left my mouth.  One night I told everyone I needed to talk to Tanpo.  I had to get them to ask Tanpo to come near to my bed so he could hear me.  So then I told him I was sorry that I didn’t call home to tell him/Mommy I got sick.  The incident I was apologizing for was purely fiction.  Of course there was no time to call anyone when I got sick – the ER doctor called home for me.  I don’t know why I said this happened, but I did, and when I made this statement it raised all sorts of red flags in my sister’s head.  She was visiting at that point and she didn’t let me continue talking.  Instead she used her “Mom voice” (“Look in my eyes! [Insert instruction to child]”) to tell me, “You didn’t do anything wrong.”

I think I believed her and I remember feeling relieved and I stopped crying.  Apparently I had a lot of angst about my situation even though I didn’t fully understand it, and the angst surfaced in storytelling etc.  I do understand my situation fully now, though, and I still have some angst.  (And I’m still telling stories – but this time they’re true.)  A couple of mornings ago I told Mommy I couldn’t shake the feeling that I did something wrong (and therefore I got sick).  She emphasized that I did NOT do anything wrong, but even if I had done something wrong (which she did not think I had) God had already forgiven me.

I thought that was a very good reassurance because I could debate about the issue of wrongdoing until the cows come home, but God’s forgiveness is incontestable.  And when I stop thinking about myself for a moment (which isn’t very often), there are plenty of people out there who are living with the consequences of past choices either from decisions they made themselves or choices their loved ones made that impacted their lives forever.  There are also so many people who have to deal with things like causing or being involved in a car accident or a fire – things that happened unintentionally but that carry the weight of responsibility anyway.  Whatever the reason (real guilt or imagined), I am so thankful that forgiveness is a fact and it’s readily available.

I John 2.1 …And if anyone sins, we have an Advocate with the Father, Jesus Christ the righteous.

43. I don’t want anyone to see me like this…

Originally Posted Nov ’12.  While I was at the 3^rd Hospital I was awake enough to interact with visitors when they came to see me.  I was still unsure if the situation was real or not – I just felt awful so let me just issue another blanket apology for any and all misbehavior that might have occurred on my part.

One day may Oregonian parents, DnA came to see me after Therapy.  We sat down and I quizzed A with questions like, “What year were you married?” and “How many years were you in E?”  (they lived overseas as missionaries).  After she answered all my questions correctly I gave up and turned to D.  “Well, it looks like A,” I told him.

We chatted for a while and D gestured over to my dinner tray.  Dinner was early there.  “Are you going to eat in front of us?”  he asked me.  “No,” I answered truthfully, “I don’t want anyone to see me like this.”  I don’t think they heard that last part because they were already gathering their things and making motions to go since they wanted to make sure I got some sustenance down my throat while it was still warm.  They needn’t have worried since the food cart the dinner trays sat in had amazing heat retention capabilities and it usually took my food a while to cool to the temperature at which I could ingest it safely.

Mom heard what I had said, though, and made a sort of “Oh, my poor baby” sound.  I think she knew about my eating concerns since I had told her “I’m like an animal” the day before.

The shock of eating messily was pretty hard on me.  Being able to swallow enough to get my PEG removed was a blessing, but relearning how to put food in my mouth etc. was not my favorite part of hospitalization.  Not being able to get up and wash my hands as often as I wanted to also bothered me. I have long admired my cousin-in-law, CT for his skill at dissecting a crab with surgical precision using only a pair of chopsticks.  He can thus eat crabs and lobsters very neatly without messing up his hands, which is not the norm at Chinese restaurants.

But eating hasn’t been the only “messy” part of recovery.  PT37 “ran” me around Planet Rehab last Thursday and I couldn’t help laughing as we passed through the waiting room and I thought of what those people must have been thinking as we passed by – PT37 gripping my gait belt and me loping/galloping along.  I heard the uneven rhythm of my limpy gait (even though I’m trying not to limp) and it made me laugh even more.

Mommy tells me I’m more “voluble” now that I’ve sustained a brain injury, but I actually try and control what I reveal emotionally, even though I’m in the Me: Unfiltered stage. I’m probably more “Me” than I was before this happened, FYI.  But most of the time I’ve got my game face on since it’s been my experience that it’s sometimes “too much” for people to know 100% of what I’m really feeling.  To clarify, I do not change the feeling itself, I just control the manifestation of it so that it’s a diluted, more palatable version of what I’m feeling that my friends/loved ones can grapple with more easily.  This is not me trying to be brave – it’s a self-serving exercise in that toning the feeling down for public consumption allows me to participate more fully in life.

But even this “game face” version of my experience is a calculated exposure on my part.  When I said, “I don’t want anyone to see me like this,” I didn’t realize it at the time but that ship had already sailed.  All sorts of pictures and posts regarding my illness have been floating around in cyberspace since I got sick – and an army of people around the world have prayed for me as a result (thank you!).  I was horrified at the hospital since I was just discovering my limitations but my parents knew it could have been so much worse and so wanted to document what they saw as achievements.  The result is a bunch of pictures of me in a wheelchair looking unhappy.  I have read old emails from Dad that literally celebrate the fact that I swallowed my own saliva. When I woke up I saw no reason to celebrate anything.  But now I do.  The fact that I did not fall off the Physio Ball at therapy last week is a reason to celebrate.  So is the fact that I made it to Tuesday night meeting, although I had a little walking trouble on the way out.

I told my friends, (the Polish-Indian-“Russian”) S’s, that the “game face” exposures are intended to keep things real.  Even though it might be “a lot” for people to digest when they’re busy trying to earn a living and raise a family I have embraced the idea that people are going to see me “like this” since A) it’s inevitable and B) I don’t want people to mistakenly think, “Oh, she’s handling this so well.”  Because I’m not.   I’m just good at faking things (like, I’m not dizzy.  Nope!).  So I hope that knowing I wanted to cry at therapy a few times this past week might help you do your duty at the office.  Or the fact that I’m on my fourth neuro-psych might encourage you to seek professional help if you need it (if you’re a believer, though, make sure to run everything you hear through the filter of scripture).  In any case, it’s a new day and I’ve got to go put my contacts and my game face on.

39. That’s good remembering

I was talking to my friend, F, a long time ago and I referenced some obscure detail in our past which prompted her to say, “As we say in Kindergarten,” (she’s a teacher), “‘That’s good remembering.”

No one had any idea what I was going to remember, if anything, when I woke up. It turns out I remembered quite a lot, actually, including everything leading up to me collapsing at work as well as stories from my childhood. I remembered other people’s childhoods, too, e.g. one of my “reality quiz” questions was to make Ruth name all of her siblings in birth order. (She’s number 2 out of 9). Another time I made her name her buddies in “the buddy system.” Growing up the older children were partnered up with a little one to help get dressed in the morning and assist in general. Ruth named a couple of her brothers and asked, “Did I get it right?” Yeah, she got it right.

There’s an old picture in E&R’s guest room of me holding Hannah (Ai Ai and Tim’s eldest) when she was a baby. I napped there during out last visit and looked at this picture for a long time. We were both several years younger. I did not have a hole in my neck and I’m perched on the bar stool holding Hannah in a way I could not pull off now, but our happiness in each other’s company has not changed. I remember that day – we were visiting them in their 2^nd house and Hannah had just woken up from her nap.

Remembering is a blessing, but it can be sad, too. There are lots of things I’ve realized only I will ever remember and I wish a lot of these things hadn’t happened in the first place. I should mention that I may be able to remember the shoes you wore to an event in 1994 but I cannot be depended on to tell you an important piece of information you shared with me an hour ago. Sometimes Mom or Dad will say something like, Remind me to plug in my phone, or Remind me to call So-and-So. 9 times out of 10 I forget to remind them. That is not “good remembering.”

When I was really sick one thing I was so grateful for was that the verses I had stored in my memory made their way out of my subconscious and were a great comfort to me when I was still unaware of what was happening and scared stiff. I used to carry a pile of index cards around in my back pocket and studied the verses on them when I had a moment. The verses that had helped me as I wrestled with my spreadsheets at work also helped me when I was too ill to know what had happened to me and why I lived in the hospital. Verses from my childhood also unlocked themselves from my heart – I’m talking about really simple stuff. I was probably four years old when Mommy had me memorize Psalm 23 so I could recite it for Tanpo when he came home from a business trip, but now at 30 years old I dreamed that I was snuggled under a blanket with Psalm 23 embroidered on it when I was super cold in the hospital but couldn’t tell anyone yet.

When I got to the 3^rd Hospital and grew accustomed to waking up and keeping a schedule I was extremely disturbed at the lack of alarm clock in my room. It did not occur to me that I lacked the motor skills to use one had there been an alarm clock on my nightstand, nor could I read or write properly, so I couldn’t read my Bible or write in my journal even though Mommy brought them for me. I could, however, press the buttons on my Kindle so that it would read to me. It would read John 15 to me in its robotic voice, and I’d mouth the words as I tried to walk in PT to try and distract myself…and also because I wanted to walk SO badly: “If you abide in me, and my words abide in you, ask whatever you wish, and it will be done for you.”

Note the contingency: “…if you abide in me, and my words abide in you…” That contingency kept that verse from being the magic verbal elixir I was hoping for, and there’s also the matter of God’s will and greater glory I was not factoring into the equation. But anyway, I haven’t really mastered “abiding” quite yet, but I figure that memorization is a good start. And since my vision isn’t so great right now I’m forced to rely on remembering more than I used to. So the fact that I can remember (albeit imperfectly) is wonderful.