462. You can’t catch me!!

 

A long time ago Ernie told me that when Ezra started to run around he’d squint up at his Mom or Dad and say, “You can’t catch me!”  and zoom off so he could have the fun of being chased (and caught).

Ernie would tell me this and laugh at the boyish fun Ezra was having.  You can see it in the eyes – it’s cheeky delight, that’s what it is.

One time early in my recovery Ezra stood near me, closed his eyes, and said, Hey, Aunty Ning Ning – watch THIS.  And he went tearing down the hall.

Of course I freaked out bc with my slow reaction time and mobility issues I couldn’t bear to see him run off with his eyes CLOSED blissfully unaware that the staircase down to the basement was so nearby, but he has radar like Josh and emerged unscathed on the other side of his little adventure.

I told Gen today that it’s apparent that I can no longer “get away” with things.  I’m getting caught red-handed all the time.  Last week she touched my shoulders and exclaimed at the huge knot:  WHAT have you been worrying about?!?! she demanded.

This week she checked my right forearm, which has been acting up.  Trainer D worked on it last Friday and left fingerprints.  But they were nothing compared to Gen’s remedy.  The tendons got crossed.  This was 1% Coach R’s fault (he seemed completely remorseless, btw) bc of a new strength exercise he had me do last week, and 99% my fault bc I am addicted to a new hair implement that requires a lot of right-hand manipulation.  When I admitted this to Gen she laughed really hard and threatened to ask Tanpo to confiscate it.  And then there was a lot of writhing and screaming as she released the tendons for me.

I’ve been babying my arm a little but I’ll be hanging out with Coach R next.  Fun times ahead.  Since the first time I got weird bruising my concern level has plummeted.  To use Trainer D’s phrase, if “you bruise like a peach” it becomes unremarkable. I was just not used to it since it didn’t happen in my old life.

One of my favorite Training moments is when I was hurting really badly one day and Trainer D asked, What are you stressed out about?”

“Will you PLEASE just FIX THIS?!?!”  I barked, pointing to my hips.

This is Coach R’s method of extracting information:

[During stretchy time.  I’m wiping my eyes so my face is covered with my hands.]

Coach R:  How was your weekend?

Me: Good.

Coach R:  That’s good…[Blink Blink, Hanging Silence.]

He had watched me deteriorate over the prior week so he was waiting for an update.

Me [Internal, when I realized he was fishing for info]:  FINE.  Let’s just DO THIS…

CMD, in true CMD style, cuts right to the chase:  “I feel your standards are too high.”

Mmm hmm.

She also can’t bear the thought that I stopped taking all of my herbs while she was traveling in China in November bc I was nauseous.  Apparently my essence is not being nourished.  Boo.

I was doing some administrative stuff on my blog last week and skimmed over my posts from the last few months.  Wow – I didn’t remember half of the stuff that happened, but when I make references to “physical deterioration over Q4” I wasn’t kidding.  And I didn’t even write about a lot of it, either.  But the important thing here is that things are better!  There’s a plan, and I’ve even recruited a couple new pairs of highly skilled eyes to watch out for me.

CMD has had two years to observe and form the opinion that my standards are too high.  My new doc has had less than one month – only two office visits.  But this week she hit the nail on the head as she outlined the direction she wants to take me in this year:  Be kind to yourself.

423. Be Kind to Yourself

461. Doing My Duty

That’s right, P2. Eyes on the prize.

It has only been a few weeks since I started my new health regimen and I feel SO much better. Of course, I know there is still a long way to go, but after I met my new doctor and spoke with Smurfette the Dietician my blood pressure (which was appallingly high that morning) went down, my pain melted away, and I started resuming the activities I had abandoned as I went downhill at year end.

This is what has been happening:

Jan 7
To: Trainer D
From: Me

Thanks for helping me Mon.  I “ran” better and was feeling good through Tuesday.  My hip started to protest again this (Wed) morning but thankfully I went to see Ninja CMD and she took care of it.  This message requires no email response – I just wanted to ask before I forget and so you can think about it and talk to me later:  I’m concerned that the hip pain is now directly related to my improper body usage/quad dominance whereas prior to this there was no discernible pattern except that it was triggered by stress.  Do you really think the pain I’ve had lately is due to quad dominance, and is it fixable?

Thanks 🙂

To: Me
From: Trainer D

I am pondering. Figure it out we will. Pain free you will be…

I was hurting so badly I sent him that pathetic email on the 7^th, but I saw my new doc and Smurfette on the 8^th and 9^th and immediately felt so much better that I went to The Gym later in the morning of the 9^th and informed him I no longer cared about his answer since both issues (stress and quad dominance) should be addressed.

Smurfette has me logging all my food in My Fitness Pal so she can see what I’m eating. To review: the concern is quantity (not enough) as opposed to quality.  I told D this morning that I have trouble staying awake long enough to eat all that food!  This is primarily a Sunday problem since we’re out for most of the day.  I find it much easier to eat and am much hungrier on Training Days.  E.g. On Sunday night I agonized over whether I could get away with not eating that 8 oz of strawberries bc I just wanted to go to sleep.  I decided that since I wouldn’t be red flagged by MFP to go to bed.  PS.  He loved the story about how sometimes I can’t finish all of my Ensure (Active High Protein Low Sugar , Chocolate! Coach R quizzed me on this – not the Chocolate part, the protein part.) upstairs during my extensive grooming routine so I take it to the kitchen and make an Ensure mocha.  🙂

To: Smurfette
From: Me
Re: My Fitness Pal info…

(You’re supposed to log exercise as well as food in MFP.)

…I use placeholders for working out with Trainer D and Coach R bc the app is difficult for me to type in and if I try to enter strength training I don’t know the names of everything we do, can’t remember, etc.  So I’m calling it “Calisthenics.”  I have to remember to tell Trainer D about it in case he might be deeply offended :).  But even though sessions are an hour I count fewer minutes of actual activity since I allow for resting, laughing, stalling, walking in between places etc…

A while later:

… I have not noticed body changes but I HAVE noticed behavioral changes.  Specifically, after I saw [the doc] a couple weeks ago and you (thank you SO much for that quick, informal consult) I felt so much better.  My pain melted away and my blood pressure went down.  I have been uncomfortable for all of Q4 bc I’ve known something was wrong.  Trainer D was brave enough to be a true friend and call me out.  He’s all, I can’t diagnose, I can only recommend….That was code for, if you don’t take action you will never hear the end of this.  So now I feel like things are going in the right direction and I’ve got people lined up to help me transition from survival mode to sustainability.  I’ve resumed my home circuit Training D told me to do, I make more of an effort to fuel up, I have resumed more of the home activities (cleaning, cooking, filing) that really fell by the wayside as my condition deteriorated over the past few months…

Yesterday:

…PS.  Let me just say again that I feel LIGHTYEARS better since joining the practice and speaking with you. Thank you!! I saw both Trainer D and Coach R today.  Fun times were had by all.  D was right about the alimentation.  I hate it when D is right.

 

454. 3 Good Things: (3) Feeding People

J handled the sharp objects for me 🙂

The 3^rd really fabulous thing that happened recently is that I’ve learned how to cook well enough to feed people! A couple of years ago I was leafing through a Crate & Barrel catalog and when I came to the pots and pans I lost it. I’m talking UGLY cry. I was so sad and I missed all my pretty dishes and cookware that Mommy gave me before I moved to Oregon. So then I bought a Vitamix and decided to learn how to cook. You all joined me as I posted recipe after experimental recipe in 2013.

So last month I decided to invite J and myself (Team Tanimal’s Recreation Director) over to A and DGI’s house to prepare 3 meals. It worked out great bc they had a fun houseguest who took charge of mashing the potatoes (Thank you, K!), their little girl loves watching the Food Network (so we were entertaining), A got a little rest since she was extremely pregnant at the time (PTL baby boy is here and all are well. PS. He’s cute as a button), and they ended up with food for the weekend!

We made:

• Dairy Free Clam Chowder and roasted broccoli and carrots for lunch
• Meat Sauce to be frozen and thawed later to put over gluten free brown rice spaghetti
• BBQ Cheeseburger Shepherd’s Pie to be baked later for another meal
• Dairy Free Custard to go with the strawberries and pound cake Mommy sent for dessert!

 

272. Dairy Free Clam or Chicken Chowder

 

It was a great morning. The night before I sent A a picture of the day’s checklist. She loved it – she said it reminded her of the checklist I came up with when I coordinated her wedding. I have no recollection of that checklist but I’ll take her word for it.

The fact that I made a checklist that listed every step is a trick I learned from other brain injury survivors. When I asked them how to cook they really emphasized the importance of planning. A non brain injured person would know immediately that for main dish X, sides A B or C would be suitable. But if you have a brain injury you’ll be wasting too much time remembering what A B and C are whereas you’ll need to keep your wits about you so you can keep track of your potholders and dishtowels since you are likely to set one on a heat source and potentially burn the house down. #True story. (The house didn’t actually burn down, there was just a significant incident.)

132. 10 Tips for the Disabled Cook

I avoided this problem by keeping the sides to a minimum, but I did write things down in the order in which I needed to do them, or ask others to do them 🙂 so we could finish all 3 dishes in one morning. So we prepped the onion and pepper, roasted the veggies, and put my Vitamix (thanks for carrying it around, J!) to good use and since I had thought it all out and written it down the night before we carried it off without a hitch and sat down to enjoy a nice lunch after our labors.

Go, Team, go!!

My Trainers have both been amused by my Bossy Smurf checklists and behavioral patterns. Admittedly, a lot of it is personality and when I was an administrative assistant I ran a tight ship. Or at least I flattered myself that I ran a tight ship. But now running a tight ship is more necessity than preference. My brain simply doesn’t process multiple things simultaneously well. Visual, audible and mental clutter are paralyzing for me, and I’ve heard the same from many other survivors. The problem is that life is messy and it’s difficult to streamline my processes all the time – so when I am able to it’s a victory in RecoveryLand.

Ruthie explained once, Tans show love through food.

My latest project is to get Mommy to assign me dinner duty once a week like I do at Boo Boo’s house. It would’ve happened a lot sooner but Tanpo doesn’t like my food. I don’t blame him. Who wouldn’t rather eat Mommy’s cooking?

I’ll say stuff like, Hey, Daddy – I just made some delicious DF cream of celery and spinach soup. It’s such a pretty shade of green. You want some?

Poor Daddy gets such a pained look on his face. He doesn’t favor my cashew cream and nutritional yeast creations.   I’ll try to cook some Asian stuff to accommodate him, but I have to put my thinking cap on bc you often have to cut veggies and meat pretty small and evenly so they cook at the same rate in the wok.

Ummm….precision is not my forte, so we’ll see how that pans out. I’ve been amusing Mommy for the past week by asking things like, Does Daddy like enchiladas? What about (cauliflower) Alfredo?

Heh heh. My first dinner duty is tomorrow night. I’m not telling Dad, but I’m making the DF clam chowder and he IS going to like it :).

UPDATE: he liked it. And last night he ate kale.

453. 3 Good Things (2) Tea – Setting the Record Straight

I am so grateful that I got to speak at the Christmas Tea and thank the friends who made it possible and all of my gracious listeners. I started off by informing everyone I was struggling physically (Trainer D had called me out the day before) and needed them to show me a lot of grace and pray for me as I was speaking. They did. Thanks, everyone!!

Coach R asked if I had been nervous. No, I wasn’t nervous bc I have been preparing for this for over 3 years. As soon as Decision Day hit I knew exactly what I needed to do. God’s work in my life is far too important for me not to talk about. I’ve just been working on getting physically ready.

I packed little baggies for our guests all by myself whereas the year before I had roped friends in to help me prepare this sort of thing when I went to Rise Up. I did them in sets of twenty and rolled around in my wheelchair during breaks. But my motor skills got a great workout and my OTs would be proud.

I had to sedate Ed Blueberry when Smurfette (Trainer D’s wife, Team Tanimal’s dietician) said she was coming. Eddie got a new tie from Mommy (Thanks Mom!!) so he could look good. Side note: at one point when I was talking I said, …Mommy is “a good and longsuffering suffering woman.” There were cheers of affirmation from the audience. #TrueStory.

Let’s go back to Trainer D for a moment. Although he was very enthusiastic about the whole thing I made it clear that Smurfette was welcome to bring anyone except him since he is male. So she arrived and all of my friends were very happy to finally meet her and it became apparent during our conversation that Trainer D had failed to prep her at all regarding my background.

Of course she knows about the nature of my illness since she’s my dietician, but she didn’t know anything about Africa etc. and we hadn’t spoken in person prior to the Tea.  So right before I got up there I said,

Hey, J – you ever done this sort of thing before? ‘Cause [things are about to get a little crazy].

See for yourself:

Clip 1:

I tried to pick and choose, here, but I really like the whole thing. We touch on a lot of very important subjects. “I learned how to walk when I was 31. I did not survive the bleed to walk on eggshells now. So I’m just gonna say it…”

Clip 2: I told you they cheered for Mommy. This is the story of Decision Day.

 

Clip 3: “I was angry, too…” The statistical likelihood of am AVM Rupture is very small, but the circumstances and timing of mine were too pointed for it to be coincidental.

 Clips, courtesy of KAR. Thanks, friend!

 

452. 3 Good Things: (1) Piano

By the time I posted Rejoice! A Final Word from Dan Uncle I had been practicing for a week and my body felt it. My back was acting up and my forearms were feeling the extra use. Not only was I practicing the medley for my video, but I was practicing my song list in case I had the opportunity to play at his funeral.

I played at several weddings in my Old Life, and some brides actually had me play them down the aisle. Not kidding. My theory is that my friends are often going for a sound that is familiar, and they were used to my sound and liked it well enough to ask me to play. Also, Y’all not picky, which helps.

306. A New Song – Descant

I used to play at funerals, too, and had played one funeral (just Amazing Grace) post AVM. This time I was not slotted to play but I got to fill in for my friend S, an immensely gifted musician, who needed to travel for work. It worked out perfectly bc I played the prelude. Historically I have camped out in accompanist territory instead of performance art land, but now that I have physical deficits its easiest to play by ear without reference to keeping time with a congregation or choosing a key in a suitable vocal range. I started to learn to play by ear when I moved to Oregon and did it 50%+ of the time when I got sick. Now I play by ear 99% of the time (whenever I can).

Here is a fascinating look at how my new sound has developed:

Before:  3 mo. after injury, July 2011 

15 seconds

Watch the left hand – although the right’s not great, either. FYI, this was supposed to be Tim Hughes’ “Here I am to Worship.”

(Daddy followed me around with his iPad all the time.  He still does sometimes.)

My first day at home – June 2011

 

After Mommy made me practice:  3.5+ years after injury, Nov 2014

3 Minutes: Silent Night, Away in a Manger (Non American Version), Holy Holy Holy, a little O Come, O Come Emmanuel

I’m content with my sound and music is an enjoyable and useful gift again.  Plus bc of my deficits I am free from the tyranny of sheet music.  But you can tell at the end in this song I was really hurting so I cut my losses before anything got worse – but I know how to manage it now…

Yes, that’s me – I’m hanging out with Candy Dog. Click for the video

The Prelude, while very imperfect, was enjoyable to me. It was such a gift to be able to participate and honor Dan Uncle in this way. It was also a very physically significant milestone. I made it for 26 minutes on the bench. That morning I had been hurting alarmingly and had resorted to the Ceragem bed prior to the service, hoping to just make it through. It turns out that adrenaline carried me through and I had enough juice in me to keep on playing for a longer period than I had been planning on, and also enough awareness to gauge my environment while keeping the music going so I didn’t freak out when people suddenly appeared within my peripheral field of vision, and to make a reasonably tuneful ending when informed that it was time to start the service. People told me they walked in and were looking for me for a while, and then realized I was behind the piano! If you didn’t know me you probably wouldn’t be able to tell anything had happened. But I guess they figured it out when they saw me riding around in my wheelchair later.

Overall, it was great. Sad, but good. I was so happy to see Aunty K again (Dan Uncle’s wife). One evening at the chapel I was hiding out in the nursery when M (their daughter) came in. Where’s the baby? I queried. Upstairs with Mom, she answered.

Your Mom is UPSTAIRS?!? (I thought she had stayed home.)

M nodded affirmatively.

Then WHY am I DOWN HERE?!?! I grabbed Leo and made my way upstairs.

Notably, I was hurting SO badly (hips and shoulders) for the week+ prior to the funeral. But the day after the service was over I had zero pain. I was just so relieved. I realized that it was a big deal that I didn’t get to say goodbye when they moved to California while I was traveling. My friends have told me stories about how they stopped by the house to visit and Dan Uncle prayed for them. Sniff. I explained to Aunty K that night as we sat together at the chapel how I had been going downhill physically but the pain had disappeared: I was waiting for you.

(Double Sniff.)

Predictably, the pain came back (less intensely) after I remembered that Aunty K was going back to California. Boooo.

So that’s where we are now – learning how to manage the ramifications of living in imperfect bodies. But as sad as it is to face the changes that come with saying goodbye, I am so thankful that God gave the gift of music back to me.

PS.  Here’s a quote from December 2012:

Playing the piano does not make me feel better, hence Mommy’s insistence that I practice. It has improved but the sound is still too different from what I hear in my head for me to enjoy. Exercising was my other form of enjoyment but now it’s my job, not an enjoyable pursuit. It’s also hampered by my impairments, which isn’t fun for me.

58. Goodbye, Shirt!

 

PPS.  I take it back.  Exercising is now enjoyable, too :).

451. Recalibration

Hello, there! This is Kermit THE Frog…Just kidding. It’s actually me. I’m just having an “It’s not easy bein’ green” moment. A Very. Long. Moment. But I hope you’re well and are in the swing of things now that it’s mid January. Woo hoo – it’s now 2015! Time has been passing and I’m trying to be happy about it. Here is a wonderfully encouraging thing that helps:

When we had Dan Uncle’s funeral in early December, his sister got on a plane right after finishing her own cancer treatment and flew around the world to attend. It was lovely to see Aunty D and Uncle P again. I remember Aunty D from when I was a wee thing, but I didn’t recall that I saw her earlier in the year before we went to Oregon. Apparently I don’t remember much from that time, but that’s another story. Aunty D spent some time observing me appraisingly from a distance and then we finally got to share a meal together with the whole family.

I did that Asian thing where we try to make each other eat things and I served her a shrimp dumpling from the plate on the lazy susan. I was like, Watch this, Aunty D, and deposited the morsel with surgical precision. Okay, that might be a bit of a stretch, but let the record show that I didn’t spill anything. (I did not attempt to help with the sauce.) Her eyes widened a bit, and she turned to me and said (in a tone that implied that the serving of the dumpling confirmed what she had been thinking,) Tell your coach I say you are very much improved.

Thanks, Aunty D! She had been watching my gait, how I navigated the crowds, and was able to play the piano. That was so encouraging for me, especially as I’ve struggled with the end of the year and those wash-out feelings. I told both of my Trainers and they were very encouraged, too. We’re on the right track.

Well, we’re on the right track, but we’ve hit a bit of a speed bump. One of my own making. So I’ve spent this time thinking about what needs to change and how I’m supposed to measure success differently. I’m recalibrating.

 

I’m starting with addressing how I approach food. I mentioned before that I have some serious psychological hang ups regarding eating. They stem from living in the hospital and having a PEG (food tube). Basically, I woke up and for a (long) while conceded NOTHING. I was like, this is the most ridiculous story I’ve ever heard, and if you think you can grab the other end of that tube and just pour stuff in, you’ve got another thing comin’. Mm hmm. I was a real treat as an inpatient, promise.

145. Illness, Body Image, and Why I Eat the Way I Do.

I force fed myself for a couple of weeks in order to reach my mandatory minimums. Meal time was horrific. Finally, I admitted that I couldn’t do it anymore during a weekly “Family Conference” meeting and my Doctor immediately made the nutritional supplements (drinks and pudding) disappear and relaxed my minimum requirement (i.e. I got in trouble if I ate less than 50% on my plate whereas it used to be 75%.) One of my nurses told me the general opinion did not look on this favorably, and one day they were all Tut-Tutting over my meal tray and my Doc was there and just said, She knows what she needs!! And that was the end of that.

I remembered this incident while lying on CMD’s acupuncture table one week and realized I needed something. So I started drinking Ensure (Active, High Protein, Low Sugar) in the morning and immediately felt SO much better.

I now have a subscription via Amazon Prime and a couple of cases show up magically on our doorstep. The only person who has voiced discontent about the Ensure thing is Tanpo. Last week at lunch he sat next to me saying, EAT! Don’t just move the chopsticks around. (He’s on to me.)

372. Wink Wink

And then this happened at dinner:

Dad: Eat this. (Pointing to some meat on his plate.)

Me: No, thanks, Dad – I like to eat my meat at lunch so my digestive system can rest in the evening.

Dad: See? I’ll cut it really small and it’ll go down easy.

Yes, I’m a grown woman, and my father is cutting my meat. Thanks, Dad!

Actually, this is not an uncommon thing. Whenever we go to dinner with my dear cousins JE asks if she can cut my meat for me or makes sure NonyaJ is nearby to do it 😊. Thanks anyway, ladies – I can mostly get by on my own. I didn’t graduate from OT for nothin’.

So yeah, I’m in the middle of some serious adjustments over here. I’ve just been making this stuff up for a while and I got away with not eating at the beginning of 2014 bc my activity level was so much lower. But now things are different and I’ve felt the difference enough to know I need some professional guidance (Hi, Smurfette!). When I asked if he wanted to weigh in on what I tell my new doctor and Smurfette, Trainer D said I already know what I need to disclose but did throw this sentence in: [Maybe emphasize] your ability to sustain daily physical activity while decreasing stress through alimentation.

Am I the only one who needed to Google “alimentation”? At first I was hoping he was practicing his GRE vocabulary on me, but he said it was his Spanish brain typing.

Either way, I know where I need to start, and I’ll keep you posted. But in the meantime I wanted to share 3 really great things that happened recently. I’ll be posting them this week, and they are proof to me (despite my alimentation issues) that I’m getting better.

450. Pray for Mom Bjorlie

Today is another snow day! I had a new doc appointment this morning but Daddy and I made a U turn and came home after realizing the snow was more significant than expected and seeing some cars stalled out by the side of the road. I cancelled my massage with Gen (sniff). Too bad, bc I’ve been hurting pretty badly. But the great thing is that Trainer D worked on my left hip for an hour yesterday and it feels so much better. He said some stuff about my IT band, something about my TFL, and a lot of other stuff I can’t remember, but the bottom line is that I’m officially quad dominant. (Side note: Oh, yeah – at one point I was wincing in pain and he just remarked, This isn’t my fault.) When he refers to being quad dominant it’s like he’s saying, I’m sorry to tell you this, but you have two heads. Trainer D is SUCH a stickler when it comes to form. But he’s going to put his thinking cap on and think about how to fix this bc he knows my main priority has been not to fall down, and if I have used my quads disproportionally to do so….well, that’s how the cookie crumbles. It’s no secret that my body parts move in a suboptimal way, and I haven’t cared a lot until now – but if it’s going to impact my future mobility I will try to adjust things. Meanwhile, the hip relief meant I “ran” better that afternoon (Coach R thought I went longer than usual) and my gait is much improved today.

So now I want to go drink some hot chocolate with marshmallows and enjoy the rest of the day and hope everything clears up well enough so my plans to go see CMD in the morning are undisrupted. Technically my cortisol levels and I are still on vacation, but I’m just popping in with a special prayer request:

Please pray for Mom Bjorlie (Ruth’s Mom). She has heart condition that really flared up a few days ago and the verdict is that she needs a valve replacement. She is currently hospitalized, and they’ll schedule the surgery asap.  She has had the flu but is feeling better today (YAY!) so surgery will likely be scheduled this week.  While you’re at it, please pray for the whole family. Thanks :).

 

If you recall, my brother Ernie (as in EnR) has a heart condition and required 2 open heart surgeries – one when he was 6, and one when he was 13. I was not the first person to get sick in my family. Now he’s grown up and he and Ruthie have 3 kids who give them a run for their money :). Mrs. Bjorlie raised 9 kids, so the woman obviously has stamina, but please pray all the same.

One more thing – I’m sharing this post bc it concerns Ernie’s second heart surgery, the one when he was 13, and the one I was actually around for. The Lord led my parents to a surgeon in Birmingham, Alabama and it makes me so sad to think of how they, and especially my brother, prepared to fly south to get this done, and then did it again when it was apparent the valve Ernie received as a 6 year old was wearing out and he was losing steam. Happily, he is doing GREAT now and you’d never know what happened when he was a kid unless he told you. I love this post (disclosure: it always makes me cry, so it might do the same to you.) bc it boils down all of Dad’s fatherly wisdom to this: Don’t be afraid.

322.  Don’t Be Afraid

A few weeks ago I went downtown with my friends to see the Nat’l Christmas Tree. It was the first time I have gone out with friends at night and since there was a lot of walking we brought Jack the Transport Chair. It worked out great because my friends know I’ve got a safe place to be, I get to rest, and they park my chair with the strollers so their children can entertain me during breaks. Wheelchair handling is not a skill any of my friends practice professionally, but they do what I do and learn on the fly. The results are often hilarious given our personalities.

Ed says, “Does this thing go any faster?…”

Example: we were crossing a busy intersection and as we plowed through the crosswalk KAR (my driver) called to me over the din of traffic, “Don’t be afraid, Ning!”

I guess you have to know KAR – but many of you do – and imagine it in her voice, which makes it 10x funnier. It was also funny bc I was obviously not afraid. I was hanging on to Jack’s arm because I was laughing so hard and didn’t want to fall out, and I took a few pics on my phone while we were in motion.

But KAR’s admonition made me recall a more serious time. I was only 5 years old and my brother Ernie was 13. He was going to have his 2^nd heart surgery (he had his first when he was 5 or 6, PS he’s very fit now – good thing, bc his children require high-energy interaction), and was older and able to absorb and be concerned about the risks of the procedure, blood transfusions, etc. I have no idea how he and my parents handled it. I’ve actually never discussed it with Boo Boo – I wonder if she fully understood what was going on. Anyway, I was only 5 but Tanpo’s parting words to Ernie as the team wheeled him down the hall are seared in my memory. Ernie went straight from his room to the OR and after his bed passed through the doorway and he was rolling away my dad stepped into the hall, cupped his hands around his mouth and shouted, “Don’t be afraid, Ernie!”

I think Dad also quoted a verse from a Psalm we had just read but I don’t remember that part. All I recall is that what Daddy wanted Ernie to remember was to not be afraid. (Sniff.)

I haven’t been feeling great lately. I’ve had more pain, I’ve wanted to sleep a lot, and I’ve lost my appetite. That’s why I haven’t posted any recipes in a while – I don’t want to eat and I haven’t been able to stand up to cook. I’m feeling better today, though! CMD poked me in the back yesterday and gave me some new herbs. So I think this is the upswing.

Last week I was in the kitchen and Mommy was talking to me about why I wasn’t feeling well. “Are you anxious about something?” she asked.

I was playing with the food on my plate but when she asked this I burst into tears. (There was no prologue – just WAH!!!)

Remember how I said in yesterday’s post that I’m “strangely more relaxed?” Well, that’s probably about 80-90% of the time. I’ve had plenty of time to think about this and I know that control doesn’t lie with me, so the pressure’s off. But I’m wired to like it when I can control things so this exercise (of Recovery) really goes against the grain. I’m not interested in the suppression of my feelings – yes, suppression can allow me to be functional, but it won’t be sustainable in the long run – I’m going for complete transformation so I don’t have to worry about them anymore.

310. Mucho Trabajo

Apparently the execution phase of my plan is not rock-solid as yet. It’s like when I mentioned how I want this to be “effortless” – Caution: This is a work zone. Psychosomatic symptoms have likely been building up for several weeks now. As my books have finally been published etc. I’ve been glad bc this is what I’ve been aiming for but this event also signifies that this thing really happened to me – my old life is gone and so are what were my future prospects.

I mean, yes – I know this happened – I’ve been sure about it since summer 2011, but acceptance and the understanding of long-term impact is a work-in-progress. Traveling and the development of new wrinkles in my physical condition have also put me more off-balance than usual. But I know what to do about this – renewed enthusiasm for the Listener’s QT and Prayer Detox is already providing immediate relief. Like the lady in Proverbs 31, I want to smile at the future.

268. Prayer Detox for Beginners

143. The Listener’s QT

Proverbs 31.25 “Strength and dignity are her clothing, And she smiles at the future.” (NASB)

2 Timothy 1.7 “For God hath not given us a spirit of fear, but of power, love, and of a sound mind.” (KJV)

442. Without Faith

 

A dear friend visited me soon after my injury – I was conversant but I would not classify myself as “awake.” I have no recollection of this visit. She told me about it when she came to visit me a couple years later (when she saw me for the first time).

In that visit in the hospital she asked me what she could pray about for me.

Me: That nothing would happen to me when I’m alone.

My friend: Ning, you know you’re never alone.

Me (scornfully): Pshaw.

She told me the story with a great imitation of my scoffing sound – it was like I was rolling my eyes saying, Yeah – that worked out really great the first time, didn’t it?

It was impossible not to laugh the way she told it, but it was also chilling in that my rawest thoughts came out when I had zero control over my faculties, and they were afraid and angry.

Later during the visit in Maryland (over 2 years? later) my friend asked me another question. I think it was so kind and sensitive that she sought an opportunity to ask me quietly in private,

Are you tempted to think that God is punishing you?

Wow. That is a million dollar question. It’s the kind of inquiry that makes you stop in your tracks, that takes a special person to have the right of experience and a history of love to ask, and that skips the formalities and goes straight to the bottom line. It’s up there with how JCJ’s mom asked me, Is it okay that you lived?

I was surprised. This person knows me very well. But when I thought about it and reconnected with more friends from my Old Life I learned that many people were extremely concerned about how this situation would impact me spiritually.

I had the immensely gratifying experience of reassuring my friend that I already decided what I thought the fact that this happened meant about everything I believed about God, but I’ve refrained from telling this extremely personal story until a new friend messaged me a couple of weeks ago and our conversation about “76.  You didn’t do anything wrong” made me think about it.

76. You Didn’t Do Anything Wrong

I’ve thought about it a lot recently bc I’ve needed to remind myself why I do this more often than usual. You’ve seen it unfold here on my blog, but let me just spell it out for you: It’s been a rough 2.5 months. As Mommy would point out, It’s been a rough 3.5 years. PS. We’re not done yet.

I know it’s been rough bc the word that appears most often in my Exercise Journal is “nauseous.” There’s also been the pain etc., but it all gets exacerbated by stressors. I asked Gen about her evaluation of my gait once (e.g. True or False: “My gait is ataxic.”) and she replied, Your gait changes depending on what you’ve been through that week.

Happily, though, my gait felt better over the last couple days (at least in the morning). We’re still sorting through everything else that’s acting up, e.g. the vision (I have to buckle down and do more home exercises with that Wretched Hart Chart like Daddy asked me to) and the crazy scary dreams.

My Nemesis (This is a Hart Chart)

But you know what? Thanksgiving is next week – so it’s the perfect time to start changing channels mentally.

What I found out by keeping my Exercise Journal is that I am indeed excruciatingly tired. But it’s not from Training. It’s from living This Disabled Life. I asked Coach R recently if he thought I was wearing my body parts out. He said no, but he thinks that I have to work harder than other people and it takes me more time to recover. I would agree with his observations, although he was talking about physicality. I’m also referring to the amount of mental energy I’m exerting.

So what’s the solution here?   Prayer Detox. I’m telling you it’s the Best Thing Ever that I write this stuff down bc I need it the most. And it’s time for some vacation – I will be out until Monday, December 1, although I’ll probably post my Thanksgiving Update next week.

Before I got sick I hit a really rough patch at work. I was SO stressed out it was awful. One night I just sobbed on the phone to Mommy, I just want to know I’m doing something right.

268. Prayer Detox for Beginners

Mommy put that question to bed by going straight to scripture: …without faith it is impossible to please [God]. Hebrews 11.6

 

 

It’s Bath Time!

I had two whole days off this week, which never happens – so I took the opportunity to give my sneakers bath time!  I usually have to do it in batches so I have a dry pair to wear all the time, but this time I did it all at once and am wearing my little non machine-washable retro Sauconys that match baby O (F and N’s son).

There are representatives from 3 rounds of shoe-buying drying here.  I decided last year after I met Trainer D and Coach R that I should invest in sneakers since I was moving more and my gait wears them out rapidly.  My needs have also changed as M37 broke me of my air cast addiction and the Southern Gym was not a huge fan of my ankle weights.  Or it could just be that I’ve always liked pretty things.  Gen called me the “shoe queen” recently.

Now I like athletic shoes that are soft and have thicker treads/soles than my Supple Leopard World Cup Shoes.  My latest round (the 2 blue pair and the black ones on the far end) are showing signs of significant wear on the left toe, but not like my leopard shoes.  I’m still hoping to keep rotating them through EOY 2014.

A girl can dream.

Happy Friday!

434. Community

This is a picture of a Sunday School picnic from back in the day. Thank you to the friend who shared it with me in preparation for our Chapel’s 50^th Anniversary! I love how there are kids and adults gathered around the table to share a meal. Some things don’t change, but I just enjoy the black-and-white nostalgia this photo inspires.

58. Goodbye, Shirt!

I’ve been combing through my old pictures, trying to find good ones to share for our 50^th Celebration. I took a bunch of random shots with the camera the Chapel gave me as a going away present before I left. Some of those photos made it onto my picture board in the hospital bc they were of some of my favorite people.

Looking at these old pics makes me a little sad bc I see my pre-AVM self smiling unselfconsciously, and I see some of my oldest friends who have passed away, and I miss them. I have told Mommy multiple times, though, that I am relieved Aunty Sila is not here to see this. Aunty Sila would NOT have been pleased and would make me do physical therapy in the gym and horticultural therapy in the gardens at Leisure World. She was so hardcore – she’d take burning hot lasagnas out of the oven with her bare hands like it was nothing. I miss her a lot. I’m just saying.

A couple of days after I first came home I was sitting with my brother in the kitchen and he queried, Hey, Ning, are you [going to church] on Sunday?

I think he might have been kidding. But in the beginning I was so far gone I hadn’t realized the far-reaching physical ramifications of my injury, so I just went out and did stuff and was surprised when I was uncomfortable. I didn’t know about managing fatigue, eating, resting, drinking and bathroom schedules. I just responded, Yeah – like, Duh, Ernie, where else would I be? I finally got home, so of course I’m going on Sunday.

I don’t even remember that first Sunday back except DGI and A were there, and I liked DGI’s tie and I held A’s hand and asked her to verify the date for me (I was still hoping this hadn’t happened). I am SO thankful Ernie asked me that question and I took him seriously since by going to meeting on my first Sunday back in the state (even though my readiness is debatable) I eliminated the drama that would have attended a future decision to start going after absenting myself for a while. I instinctively clung to the familiar, and to the routine – most of which had been eradicated – but I somehow managed to get to the meeting, and my friends carried my chair up the steps for me. Thanks, guys!

325. Make them carry you!

Seeing old pics like the one above remind me that even though everything changed when my brain bled this is where I came from, and my future lies with this community. When I moved to Oregon I settled in, got involved, and loved it because I had been practicing for a lifetime in Maryland.

On one of the first times he preached at our Chapel after I came home, Mr. H told me that when he had first gotten the news about my AVM and understood how serious the situation was, he didn’t think he’d ever see me at a meeting again.

Spoiler alert: He’s seen me. Multiple times. And thank God I’m mentally intact enough that I can follow what’s going on. Last time he preached he said something about how Responding in anger…will never accomplish the will of God in your life. Forgive me – I’m not doing the point justice. He delivered the statement so powerfully that at that point I elbowed KAR who was sitting beside me and mouthed, That was way deep.

The expectations overall were not very high for me. Another friend told me that no one would have blamed me for lying in bed and watching Netflix for the duration. I’ve tried that before, actually. But there’s only so much you can watch before you can feel your brain turning to mush, and my brain is already compromised, thank you. And I am grateful to be improving to the point that I can keep my Recovery schedule going with Team Tanimal.

RecoveryLand is like the Wild Wild West. I’m exploring, and it’s kind of crazy sometimes – I prefer order and predictable patterns. I often feel like I’m floating in space, having trouble believing that the Land of the Living really is for me, like the dove sent out from Noah’s ark, trying to find a perch to rest on (Genesis 8.11). But as Mommy sagely pointed out recently, the fact that I did not die means that it is for me. And when I think of my Chapel Family I know without a doubt that I belong there.