I wasn’t talking to you….

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I love how Ed R. Blueberry has been welcomed into our family without question.  To the kids, especially, he is simply part of the landscape of our lives.  One day when Ezra was maybe a young 3 I went upstairs to nap at his house and he came running after me holding Ed.  “Aunty Ning Ning – you forgot Ed!”  He said it in his little Ezzie voice.  Wasn’t that sweet?

The above pic is from Summer 2013, so it’s kind of old.  This is what happened:

Josh:  You wanna watch me play a game?

Boo Boo:  Sorry, honey, I’ve got to wash the dishes.

Josh:  I wasn’t talking to you, I was talking to Ed.

:)

Even Tanpo has gotten used to Ed.  I must admit, I have taken somewhat of a naughty delight in making Ed invade Daddy’s personal space, making Ed sit on Dad’s chair, books, desk, etc. – anywhere that requires Dad to take notice of Ed and move him.  Daddy has referred to poor Eddie in the past as “Your animal” and simply, “this.”

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

Originally Posted Nov ’12.  While I was at the 3rd 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.

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24. Experience

Cherry Blossoms | Ann Ning Learning How

I originally posted this in October ’12.  This week I got I special note in the mail from JEPK’s mom, and she enclosed the gift of some beautiful cherry blossom stamps – sorry I forgot to photograph them!  I love cherry blossoms.  There are trees that bloom nicely outside of the parking garage at work so when I got back from Africa in late March ’11 and was working from D.C. I asked my colleague C, “Did I miss the cherry blossoms?” as we IM’d one morning.  She checked on her daily walk (I used to cross paths with her and J occasionally) during lunch and reported back to me that I had not missed them.

When I got home I slept downstairs in front of the T.V. and I was very confused about the things I saw on the news.  I was conscious of the Royal Wedding (I think the nurses had been talking about it so I dreamed about it), but everything else that happened during the larger part of April-May 2011 I missed entirely since I was asleep.  Even when I’m not asleep I live under a bit of a rock, but getting sick just exacerbated things.  One day I couldn’t stand it anymore so I asked, “Mommy, they caught Osama?”  She confirmed that yes, that had happened before I woke up.

A few days ago I heard about the car bombing even before it hit the airwaves.  I didn’t miss anything since J told me about it.  A couple of days later her sister RSKL talked to me about it, too.  It had been particularly unsettling since there is a large K contingency in the Mother Country, and this act of violence had occurred on the street where a cousin who had recently visited us here was walking on a work break shortly before the explosion.  Thank God she was spared.

A couple years ago another family at church lost a beautiful young niece/cousin in another car bombing.  Our loved ones are often not spared and those who remain must mourn and keep on living life.  For many people that life is lived within a conflict zone that doesn’t exactly invite peace of mind.  But home is home, and peace of mind must often be Divinely superimposed on a situation.

A few years ago Mr. R (K&I’s dad) told me that nothing was going to happen to me that God didn’t know about.  Mrs. R (their mom) also told me that no one was going to “tie my bow” (like when you put a ribbon on a present) better than the Lord would.  I was really stressed out (to the point of psychosomatic symptoms) and was afraid of all the messy loose ends I was facing at the moment.  In retrospect I’m amazed at how they told me these things with such conviction.  “How did they know?” I asked myself.  But the answer demystifies their adamancy:  Experience.  They spoke with certainty because of their own experience.

Several years ago when Dad had cancer I cried in the parking lot at church but tried really hard to hold back the tears because I told my friends, “I don’t want to indulge.”  But when she saw I was really struggling, JEPK stepped forward to give me a hug that said I could cry all I wanted and it would be fine.  It was the kind of comfort born out of experience – the kind of hug only someone who has known great familial sickness and sadness can give.

When I was in Burundi I met some people who had every reason to be angry and bitter, but had chosen not to let the violence that had robbed them as younger people poison their adulthood.  They were now choosing to pour out their lives to serve “the least of these” of their country and I was amazed at how quietly and resolutely they worked after how much they had endured.  The war years formed a generation’s collective experience and the people I’m thinking of chose to take their experience of God’s grace in the midst of tragedy and applied it to their lives as they looked to a brighter future.

So for all you folks in the Mother Country, thank you so much for praying for me over the past ~18 mo.  Now it’s my turn to pray for you.  And I’m not the only one over here who thinks of your anxiety and prays for your peace.  There are so many of you over there that your collective experience of God’s grace must be astounding.  If I could travel I’d go visit you and ask you to tell me about it over a very large meal :).

Dad and karine - Cherry Blossoms

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7. An Infinite Do-Loop

Walking the loop

Originally posted 10.8.12.  I’m going to see Dr. A6 Frankenstein tonight!  (He’s the one who taught me to walk.)  Tanpo and I went walking on Friday and walked the “loop” in our neighborhood for the second time in my post-AVM life.  This has actually been a goal of mine since I woke up in the 2nd Hospital and was chattering away, making lists of things I wanted to do when we got home.  I told Mom where we needed to go shopping, and restaurants we needed to eat at, and I said I wanted to go walking with Dad but needed him to promise to hold my hand since after his triple bypass in ’09 I used to march him around the neighborhood but he refused to hold hands with me since he thought it was safer to meet oncoming traffic if we walked single-file.  Dad said he’d hold my hand now, but my hands are occupied.  I usually push Charles my Rice Baby (a stroller weighed down with 20 lbs. of basmati) when we go outside, but since E&R borrowed him to go on a Smithsonian field trip I pushed Jack, my blue transport chair.  The loop is only 1.8 miles long, and it used to take a leisurely 20 minutes, but this time it took an hour and I needed to rest periodically in some random driveways.  If Mommy had been home she would have come to collect me in the car around the 40-minute mark, but Mom was at the grocery store,  and Dad’s evaluation of my physical condition indicated that a little rest in the shade would give me the boost I needed to walk several yards, so we eventually made it back home with me pushing the chair, not riding in it.

It felt like I was on the never-ending walk, and in a lot of ways, this entire experience is like an infinite do-loop.  I’m not a coder by any means, but I took an intro to VBA course in B-school where we scoured our VBA for Dummies textbooks and emailed each other our models when they got stuck doing the same thing over and over and we were hoping a fresh set of eyes would uncover the infinite do-loop that was messing us up.  I definitely feel like a hamster on a wheel as I struggle to regain the ground I lost this past summer as my left leg began to act up.  I learned early on in Physical Therapy, however, that “the goal is for you to tell me before you pass out,” and then I met hardcore PT6 and his equally hardcore intern, PT7, so I’m used to people who mean business.  I shouldn’t be surprised that Tanpo is one of them – my prior experience points to this tendency in him, I was just hoping to play on his paternal sympathies.  Oh well.  I think that he thinks the best thing he can do for me is push me to do more.  So he does.

But its not just regaining lost ground that makes me feel like a hamster on a wheel – it’s every day living.  At the same time that I love to celebrate life’s events with my friends, every time I learn of a new home, a baby born, or a promotion won my happiness is tinged with longing.  It’s a longing for the kind of life that isn’t mine right now.  I suppose, though, that lots of people feel the same way, meaning that they are in an infinite do-loop.  Maybe it goes like this:  Get up, go to work, fight traffic, put a square meal on the table, help with homework, supervise bath time, enforce bedtime, go to bed yourself, get up and do it again.  I used to do that, minus the kid-related things, of course, and I was happy about it, because my life, although quiet, was purposeful.

A friend shared a B. Moore quote with me recently that said something like how we can live with pain a whole lot better than we can live with purposelessness.  So when I think about my life today, yes, there’s pain, but it’s still purposeful – I’m just in “waiting mode” to see what the purpose is.  In general, though, pain happens, but purposelessness doesn’t have to.

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410. “That’s too much weight for the lady.”

Just relax.   [Ezra and his turtle in the car]

Just relax. [Ezra and his turtle in the car]

A gentleman who usually chats away with Trainer D in Spanish approached us while I was on the leg press Monday. “That’s too much weight for the lady,” he observed in a very refined tone and accented English. Thank you! I felt validated. I like him, I told Trainer D as the man walked away. Yeah, D agreed. He’s great. (PS. 20 minutes into my session I asked, Is it leg day again and you’re not telling me? Answer: yes, it was leg day. Apparently it’s a regular thing now. :/)

A few minutes later a young guy took a break from his appalling pull-up regimen to come consult Trainer D on something. I was minding my own beeswax and the guy turns to me and says, Now, if D yells at you it’s okay – it’s for your own good.

No worries there, I replied. If he does I give it right back. :)

Upon reflection that guy was probably giving that pep talk to the wrong person. I must admit that sometimes I’m the instigator. :) :)

Right after Leg Day I went to The Running Gym to hang out with Michael Phelps and Coach R. (Side note: Trainer D did not know about my back-to-back schedule but when he found out he immediately put some parameters on my “running” time and said we’d switch Leg Day to a different day when I’m not going to the Running Gym.) I was glad to “run” and had a great day overall. Tuesday and Wednesday were pretty rough, though. There might have been screaming and crying with Gen and CMD. (Me: Are we done yet? (whimper) Gen: I know. (resolutely working away))

The rough days were not a result of my back-to-back Training sessions on Monday. It’s just stress. I’ve hit a speed bump. As tough as this past month and a half have been, the past couple days have been tougher. RecoveryLand is not smooth sailing even though I’ve done my best and am grateful for the extent to which I’ve been able to optimize my Recovery over the past year.   It’s not enough that I lived – I have to deal with the fallout and there are many hoops to jump through. (Side note: I do feel better after talking and laughing with Boo Boo last night. She’s pretty much the only person I talk to voluntarily on the phone. Also, I think we’re reaching the tipping point.)

129.  Ed says, "We're going with Plan C"

129. Ed says, “We’re going with Plan C”

I know I’m on the winning team here – no worries there – it’s just that I get tired when I think of all the stuff that needs to happen to get from Point A to Point B. So I’m going to take it easy – you’ll be enjoying pictures and/or re-posts from my Blog’s “early days.” FYI, post 100. Just Keep Swimming, was my first “public” post. Most posts with a number <100 you probably haven’t read before unless, like several of you have told me, you discovered my blog and sat down and read the WHOLE thing. <3 Thanks for doing that <3.

I write because the emotional payback outweighs the physical discomfort. But lately the physical discomfort has been “too much weight for the lady,” so I’m taking advantage of the flexibility this platform offers me for at least a week. Thanks for reading, and above all, thanks for praying! Xoxo Ann|Ning

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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 2nd 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 3rd 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.

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409. How To Change Channels Mentally

Watching TV w Kpop on my first day home, 6.23.11.  I couldn't eat the popcorn in the cup so I just held it to keep her company.

Watching TV w Kpop on my first day home, 6.23.11. I couldn’t eat the popcorn in the cup so I just held it to keep her company.

There is a huge TV screen in front of the AlterG at The Running Gym. Actually, there are screens all over the place. I learn a lot about what’s going on in the world from my time there. Sadly, though, my sessions often intersect with a time when a certain show comes on that I don’t like. “R, will you please make that lady go away? She makes me nervous,” I’ll ask Coach R to change the channel for me.

Today a nice girl helped me and was zipping me in and messing with the remote. Coach R came over. “She really loves the [Talk] show,” he offered helpfully. Side note: thanks for forwarding my interests, Coach R. I default to watching sports since it’s pretty benign except for the time they were showing crashes from the Tour de France. “Do you know what channel ESPN is on?” my helper queried. “Do I know what channel ESPN is on,” Coach R echoed scornfully.

And then I happily enjoyed my solitude for half an hour. Fun times were had by all. By “all” I mean myself and Michael Phelps since there is an autographed Sports Illustrated cover parked in front of the Alter G and most of the time it’s often easier for me to train my eyes on the gold medals instead of the TV screen above. Coach R mostly gives me a wide perimeter and observes from a distance so it’s usually me and Michael time.

In the early days at RIO (3rd Hospital) I preferred to think everything was a dream instead of grappling with the idea that this bad thing had actually happened to me. One day at lunch I asked Mommy for permission to “change the channel” in my head (I posited that we were stuck in a really bad reality TV show). “I don’t understand,” poor Mommy said. “I don’t need you to understand, I just need you to say ‘yes’.” “Yes,” Mommy immediately said bc she is nice like that.

My attempt to mentally change channels failed but it’s still a useful analogy. I listened to a message by Chip Ingram yesterday and remembered how good he is at breaking things down so I can understand them. Re. how to face the future in times of doubt one of the steps he offered was to itemize the things God has done for you and then then this list will lend itself to meditating on the kind of Person God is to have planned and executed them. You’re moving from His acts ==> His ways.  Great tip, CI – Thanks!

268.  Prayer Detox for Beginners

268. Prayer Detox for Beginners

I have really enjoyed using my AlterG or home cardio time to Prayer Detox. But I’ve felt greater anxiety about the future lately and it really helped me to make a list of blessings and then think about the character of God based on that list. First on the list: meeting M at RIO. Seriously? WHAT was that about? As Timmy said when I told him she found me bc her neighbors are my friends from my OR church, “There’s a ‘small world’ and then there’s Ning’s world.” (Ann vs. Ning FAQ) Remember that note I wrote myself?

368.  Commiserating

368. Commiserating

…[He has] sown seeds for your encouragement along the way. As these seeds grow and come into bloom you’ll be surprised and delighted that the details of your New Life have been so carefully and lovingly planned. Remember to thank Him that you can trust Him with your happiness.

359.  Running With Myself

359. Running With Myself

Sometimes I forget. But I love that getting back on track is an attainable exercise that doesn’t wear out with use.

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408. Clarification

Let me explain this to you *one* more time.

Let me explain this to you *one* more time.

There was some confusion last week when I shared my TV show analogy about going to the Gym: if Trainer D and I were a TV show it would be called Bossy Smurf works out with Animal Muppet. It would be immensely compelling programming, FYI. But I think people were confused bc of the example I shared (the StairMaster incident) and my sentence structure. So just to be clear, Bossy Smurf = Me and Animal Muppet (Brainy Smurf in disguise, actually) = Trainer D.

I might be Animal Muppet if we were talking about Coach R, but he is not Bossy Smurf. I know he’s very accomplished and all, but it’s best to leave bossing to the pros. Trainer D must have picked it up from watching me. Mommy has dropped me off before and told me, “Don’t be too bossy,” as I go to Training. Yeah, I think we burned that bridge a long time ago.

I saw a new ophthalmologist and N2 last week. My new Eye Doc was super nice and really listened but an eye exam usually includes the obligatory dilating of the eyes so by the time I made it downstairs to the Neurology department I couldn’t see anything so I’m not sure how I managed to sign my name for my copay. Periodically I like to ask (new) doctors for clarification on their stance on things like pain management, surgical intervention, and dizziness medication. I have ideas on these subjects in my head but like to refresh them against professional opinions occasionally.

When the first anniversary of my injury passed I had high hopes that N1 could give me a pill that would magically make the dizziness go away. She explained that I’d pay for it in additional sleepiness. Already possessing an

117.  AVM Metrics

117. AVM Metrics

appallingly low qi I decided against the dizziness meds. N2 clarified the situation a step further. Apparently since I have a cerebellar disorder it’s going to heal via adaptation – so I need to actually feel some dizziness so my brain figures out to deal with it. (This is my layman’s terms summary).

122.  All Abord the Dizzy Train!

122. All Abord the Dizzy Train!

I thought that was fascinating. One day I asked Coach R if he felt that “gotta get your sea legs” moment after stepping off a treadmill. Yes, he opined, that’s normal.

That’s not why I was asking, I said. I don’t feel that anymore bc that’s how I feel all the time.

I can’t say that the sensation of dizziness has decreased since I moved from the 2nd to the 3rd Hospital in Oregon (May 2011) but I can say I’ve learned how to manage it. Well, I should hope so – it’s been 3 years! But what I’ve felt to be happening makes more sense in light of N2’s clarification.

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