479. Encouraging Thoughts

Flying out of PDX on Eddie's birthday, 4.7.14.  I like to wear this shirt at the airport to make the TSA people nervous.

Ed and I flying out of PDX on his birthday, 4.7.14. I like to wear this shirt at the airport to make the TSA people nervous :). 

It is increasingly apparent that I can’t hide things from my people anymore.

1) I can’t keep Trainer D from keeping that ridiculous mental calendar of his that measures the cadence of my physical bumps in the road.

2) Coach R oscillates between calling me out without reservation and asking searchingly during Stretchy Time, How was your run? When I KNOW he saw me limping, or coughing, or walking really slow a few minutes earlier.

3) Gen told me a couple days ago that she could tell by the state of my shoulders that I’ve been doing things I don’t want to do this week. (I’ve been talking about my feelings and my shoulders were up near my ears.)

4) CMD spent a lot of time working on my nausea and digestion points and told me at the end of the session that when I was just talking to her in her office at the beginning she could tell I really wanted to throw up but didn’t.

 

Right…..so about that game face.

 

When I told CMD about the PTSD she was NOT pleased. We were talking and she held one wrist to take my pulse, and then she switched to the other side, just to check. She had been not pleased for a while because she had seen my stress building and my physical situation going down hill.

 

One day, prior to my diagnosis, i.e. before I knew that my distress had a name and could be treated, she broke down the situation for me. I was lying face down on the table – she took my left hand and guided it to the hole in my head and made me feel it.

 

See? She said. It is so much smaller. You should think encouraging thoughts. YOU ARE GETTING BETTER.

 

Good thing I was face down bc I almost burst into tears right then and there. She was offering physical evidence that I should be encouraged and I was moved by her kindness.

 

Still, I was totally grossed out by the hole in the head thing and managed to pat it gingerly and then extract my hand and tuck it back in place as quickly as possible. Some amount of closing was to be expected after they didn’t replace that piece of skull, but CMD wasn’t expecting this much. So now she continues to paint my head with herbs and says she’s “greedy” for more.

 

I go to her (and all of Team Tanimal) because God knew I needed people with extremely high levels of professional expertise and equally strong EQ’s (Emotional Quotients).

 

As I get better I love having the extra margin to do what she did for me – to be a Barnabas and encourage other people. Friends have asked me how I can manage to be interested in other people’s problems when they are so different from mine. My answer is that if you care about a person, you automatically care about their struggles, so it comes naturally. And as the Lord gives me the grace to navigate my own issues, I like to talk about what concerns my friends bc that’s what friends do – we don’t have to soldier on all alone.

 

400.  Yield

400. Yield

Ann Ning Learning How |Nonprofit books on Amazon!

 

 

 

 

468. Storytelling

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I pitched my idea for my 3-hour workout plan to Coach R last week. I proposed a TV show format – Coach R’s Neighborhood – we’d use a zip up hoodie or track jacket in place of Mr. Roger’s sweater and would just need to recruit a colleague to follow us around, taking video on his phone. Coach R didn’t say, “No,” which I chose to interpret as tacit consent. Well, who wouldn’t be up for this? It would be immensely compelling programming. We could be viral YouTube celebrities.

Trainer D and I are working on Bossy Smurf Works Out With Animal Muppet.  (Reminder: Bossy = Me; AM = Trainer D). The earlier parts of Recovery were like Survivor: The Brain Injury Edition and I was constantly getting voted off the island. Gen has a unique point of view that would make for some riveting After School Specials. CMD, however, cannot have a TV show. It would be too scary – and I want all of this to be family-friendly fare.

10. I got voted off the island.

10. I got voted off the island.

Just kidding. I describe CMD to other people as “frighteningly competent” and “wonderfully compassionate.” Seriously – I walked into the waiting area today after treatment and was thrilled to find a new patient there (I had heard her enter a few minutes before and was hoping I could have a word with her). I indicated that starting treatment with CMD was one of the best decisions I’ve EVER made and that I try to get all of my friends fabricate a reason to go see her.

I also love referring members of Team Tanimal to each other. Trainer D asked for Gen’s information when I walked in one day and announced, She grows in fantastic-ness EVERY WEEK! But now I just tell people, Gen gonna change your LIFE.

Incidentally, I feel SO much better today. My joints have settled down and I am in the pain-free zone right now. This is a good thing – I’ll take it for as long as it lasts. I was really hurting on Monday, but I “ran” and immediately felt much better. During Stretchy Time I explained why my mind works like this to Coach R.

I told my first neuropsych (the one at RIO 3rd hospital) while I was standing in The Vice (standing frame) and he was talking to me one night, This is like a really bad reality TV show.

He was like, That is so interesting – tell me more about this Reality TV show…

73.  Stronger

73. Stronger

The man is a 20+ year veteran of this profession and my nurses were liberal in their praise of his skill and experience. But he, like others, were apparently not expecting the level of confusion I displayed as I struggled to figure things out.

409.  How to Change Channels Mentally

409. How to Change Channels Mentally

I tried to get Mommy to give me permission to “change the channels in my head. And when I’d say things to staffers in my attempts to make them admit that none of this had actually happened they’d be like, Are you confused about the date? And I’d be like, Okay – feeling all defeated on the inside bc I didn’t get the answer I wanted.

But I think in terms of TV shows bc that idea was one of the ways I made sense of the situation early on. I felt like I was a 3rd party observer for a while, and then I came to understand that even though I felt like this whole scenario was a poorly conceived plot no one would believe it had really happened and I had to live it, like it or not.

Even before I woke up I had terrifying and hilarious dreams in The Valley that make sense retrospectively since I’ve been told of events, people and places that appeared in my dreams in an altered state. Once I started to wake up and eventually regained the use of my voice I started storytelling in earnest.

I told stories to my family (poor Daddy was confused by this), and to the nurses – e.g. I knew there was a lot of restroom-related anxiety (I had a bad UTI) so before I would characterize myself as “awake” I told one of my nurses a long story about how OF COURSE there were issues bc of the kind of food I was being fed, and my body couldn’t process a 12 oz bottle, I needed an 8 oz. I was so adamant and wouldn’t stop the verbal flood of argumentation my nurse kindly changed my Food Tube Bottle to a smaller size.

I guess I was desperately seeking to regain some control when I woke up and found myself in such a weird situation. It’s still very much a control thing. I tell stories on this blog all the time – and when there is no conceivable way for me to make something funny I’m learning to put words around it and be able to verbalize certain memories, regrets, etc. to other people so that I get to regulate how that idea takes shape in my consciousness and yours, and it’s not just a shadowy figure hiding behind all of the rubble in my mind.

The other half of this is simply that a lot of this stuff is legitimately amusing. Seriously, it’s a very powerful thing to be able to laugh when life is not overtly funny. But I would argue that many things that happen to me ARE overtly funny. Ask Mom – watching Tanpo’s eyes get all wild and crazy when he advocates on my behalf makes me laugh so hard I have pulled things in my stomach. I laugh all the time during Training when Coach R demonstrates things bc I remember when I used to get carried around all the time and the “active” minutes in PT were devoted to learning to sit. I apologized to Trainer D bc I’m likely undermining his credibility as a Trainer by laughing so much. Poor Coach R probably isn’t used to so much laughing during Training, but I can’t help it. I’ve tried to ease him in to this situation over the past year, but it’s not my fault that this situation gets increasingly entertaining as time passes. I explained to him, If you had known me before my injury all of this would be 10x funnier to you.

138.  How to Laugh when you Really Feel Like Crying

138. How to Laugh when you Really Feel Like Crying

Ann Ning Learning How |Nonprofit books on Amazon!

462. You can’t catch me!!

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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

423. Be Kind to Yourself

Ann Ning Learning How |Nonprofit books on Amazon!

449. Recalibration in Process

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Happy New Year!

I had so much fun with my family I need another week to recover. It turns out that there is a general consensus that I have been declining over the course of Q4 ’14 no matter how much I try to cover it up.  I knew the morning I emailed Trainer D with a request to modify the day’s work out from the tone and brevity of his reply that he had a LOT to say but was saving it for verbal delivery.  I was right – essentially Trainer D put his foot down and called me out big time and I thanked him a few weeks later for being brave enough to do so bc I’ve known something is wrong and was relieved that someone intervened.

Here’s an excerpt:

Trainer D:  [You can’t do this anymore. – my paraphrase.]  You can’t just eat legumes.

Me:  I can’t even eat those!  (I can eat some, but even protein-rich plants are difficult for me to digest so I’m supposed to be very careful about my intake.  I fell off the meat bandwagon lately – Daddy is not pleased about this.  I’m still eating some, though!)

Trainer D (fist clenched and face contorted painfully):  You are killing me.  Absolutely.  Killing.  Me.

[And then he went into the thing about how he can’t diagnose, he can only “recommend” that I do XYZ – i.e. consult with Smurfette (his lovely wife J, the dietician).  So I’m working on getting set up to do so formally.  I’m going all out – more so than he originally suggested.  I’m signaling that I’m ready to take this seriously and do whatever I need to do even though I have some major psychological hang ups regarding food from living in the hospital and having a PEG.  Well, I knew I had to do something, otherwise I’d never hear the end of it. :/]

I think Coach R was glad he didn’t have to intervene himself, although he was likely gearing up to do so if necessary.  I said to him between sets:

Trainer D got up in my grill last week.

CMD lectured me on Wednesday.

You wanna boss me around, too, R?  [I double dog dare ya.]

Heh heh.

Just kidding.  I’m actually quite compliant when it comes to treatment, therapy, training, etc.  Well, I try to keep things interesting for the entertainment value but I generally do as I’m told except for taking off my shoes.

Side note:  I took a break from the breathing exercises Trainer D made me promise to start doing bc I had a minor breathing incident a couple weeks ago at the Running Gym.  I got too excited and was unable to manage my air and swallow at the same time.  Shhh….don’t tell my Speech Therapist(s).  I tried to sneak out while Coach R wasn’t looking but he caught me :/. Mommy opined that I need to run slower.  I replied, That’s booooring.  I’m doing much better with the breathing now, though, have slowed down a bit and am being more careful.

So for now I need some more time to recalibrate and see what I need to do differently in 2015.  I plan on being much healthier and stronger ASAP so my raging chi and I will be back in action on Monday Jan 12.  Happy New Year!

Ann Ning Learning How |Nonprofit books on Amazon!

448. Called Out

448.  Called Out

Isn’t this a pretty photo? My friend, KAR took it at her pretty house, at the pretty Christmas Tea, where lots of pretty ladies gathered on Saturday. It went very well, thanks! I was so glad to be there, and to spend time with so many friends I’ve known since birth, and set the record straight about how this situation has impacted me since it’s become clear that many people have been concerned, to say the least.

It was especially wonderful to see my friend Je there with her brand new little babydoll!! And it was absolutely fantastic to finally meet Trainer D’s lovely wife, formerly known as Mrs. Miyagi, but we decided her new name would be Smurfette! She has been Team Tanimal’s dietician for most of 2014 after an email consultation early in my Training career, but her welcome package got lost in translation and I was so glad to give her (another) bracelet of her own so she doesn’t have to borrow D’s.

Speaking of Trainer D, he totally called me out last Friday. The problem: that man has too much data. Now I’m keeping an exercise journal for him, and he does this nerdy thing (one of many) where he tracks my pain levels based on unrelated emails. He’s been reading the signs for months now, but apparently I can no longer argue with him about it or hide it.

Things came to a head last week. CMD was in fine form when we were reunited on Wednesday although she gave me The Eye when I told her I was having trouble eating from the stress etc.  Gen was also concerned, plus she had an agenda she pursued relentlessly that included working on my scapulae, since they are misaligned with my hips big time.  Coach R extracted more information from me regarding the nature of my ailments and has been warily watching me decline for a while, now.  And then on Friday Trainer D got up in my grill about my breathing, we did an utterly hysterical version of Trust Falls while he was trying to teach me a new neuromuscular lunge technique (Nerd Alert!) and strongly suggested I consult with Smurfette regarding my diet. He listed four dangers related to not nourishing your body appropriately, and they were interesting and insightful, but sorry, I can’t tell them to you bc I forgot them already. I was mainly concentrating on the fact that he is clearly ignoring my proposal about having Silent Training Time periodically. But seriously, I’m grateful bc that is why I keep him around. It’s the purpose of Team Tanimal in general, actually.

To clarify, his concern is the quantity, not the quality of my food. I might not be eating enough to sustain my higher level of activity. I have been stressed as we approach year-end. It’s been building since September, really, and although I’ve blocked out many things, I’ve been remembering a lot of sad and harrowing details from our Oregon trip and the early onset of my illness.

I’ve made some incredible physical and emotional gains this year, but I understand now that the emotional gains come at a very real physical cost. The emotional gains I’ve made have been critical to my Recovery, but I’ve taken some real physical hits as a result. That said, I told Coach R a while ago, when I look back on this year, I’d do it all again in a heartbeat. And overall my physical condition is directionally correct – i.e. if it were a graph, the line would be pointing up.

Before we went back to Oregon I was unraveling. I had a heartbreaking conversation with Coach R that went like this:

My scans are clean. I don’t expect anything to happen, but in case it does, what are the procedures in place to take care of it?

Poor Coach R.  I was torturing him unintentionally for at least the first 6 months of Training. But really, I wanted to know bc I didn’t see a crash cart anywhere and I was concerned that I might expire at any moment. I didn’t need to ask Trainer D since we’d already covered that ground conversationally.

The stress has been building for a while now, even though I’ve got nothing like Oregon looming on the horizon. For the past week or so I’ve been uneasy – I know something is wrong.  But let me really clear about this: Ain’t no one gonna die, least of all me. Before Oregon I was very concerned about the dying thing, hence that convo with Coach R. But now I know that my symptoms might act up to the point that I am caught by surprise and flinch in pain or stumble bc I lose my balance badly, but all of this falls into the category of Annoying, not Sign of Imminent Mortal Danger.

The manifestations that come to mind are some tripping incidents at thy gym(s), the need for modifications to the regimens, needing to “run” less intensely, taking unscheduled “rest” days, and loss of appetite and nausea. Oh yeah, and the eyes, dizziness, and body parts in general are getting increasingly uncooperative.

Trainer D actually put two fingers in front of his eyes on Friday and then pointed them to me like, Yeah, I SEE YOU. MM hmm. Animal Muppet’s powers of observation are not to be underestimated.

I want to sustain my higher level of activity bc it is extremely helpful mentally, so it’s time to go on vacation early and get this thing sorted out. So although I had planned this week already I’m signing off today to concentrate on the game plan for this new phase of Recovery. It’s time to recalibrate. 2012 was the beginning of my hemiparesis and when I first realized that my body works very differently now and there were physical consequences to deal with even though learning how to walk was such a blessing. 2013 was when I met CMD, M37 put me through my paces, I started to exercise more and concentrated on learning how to cook and clean. 2014 was a blur – we went to Oregon, Mommy sent me to Boo Boo’s so I wouldn’t die of stress, I transitioned to the Full Disclosure Model with my Trainers, met Gen, made serious gains, took significant hits, and now it’s time to figure out what needs to happen next.

Bye for now!  See you in 2015 🙂 ann|ning

443. Thanksgiving 2014 Update

343.  Strength & Honor

343. Strength & Honor

Can you believe 2014 is almost over??  The days when my parents would come home from the hospital and Dad would stay up late typing Updates are passed.  I only send updates like this once a year, but I blog  5x/week and I’d love it if you came along for the ride (fasten your seatbelt).  Here is a sampling of 2014‘s Greatest Hits. When we went to OR earlier this year a friend greeted me as my wheelchair and I arrived at church  that Sunday with, The unfiltered version of You is the funniest thing I’ve ever read.  She was a faithful visitor while I was an inpatient and keeps up with my adventures in RecoveryLand via my blog.  Apparently the contrast in my pre- and post-AVM demeanors is visible in my writing.  PS.  I’m more fun now.  Ask around.  

Last Thanksgiving I told you I was transitioning to Medicare.  I was discharged from Therapy/Rehabilitation in October but I’m still working hard in the gym under professional supervision.  One of the benefits of getting stronger is that my vocal health has improved and there is no longer any talk of surgical intervention 🙂  The Infrastructure building portion of my Long-Term/Self-Directed Recovery is complete, and the extraordinarily skilled professionals (“Team Tanimal“) I see daily are living proof of God’s care and provision for me.

When I grappled with the notion of returning to Oregon to dispose of my things I actually said out loud to God, “I can’t, and I won’t.”  Unsurprisingly, the Lord’s grace turned those statements into ICAN and I DID.  I had previously vowed never to return to any of my hospitals, but I visited all three and reconnected with many of the wonderful people who took such good care of me in the beginning.

I’m so glad I went and so grateful to the friends who made the trip as logistically easy as possible, but it still took a lot out of me.  I am physically improving but perhaps the biggest gain I’ve had this year is that I finally admitted that prior to my brain bleed when I wanted to become a missionary I asked God not for a career change, but for a life’s work.  Well, I got one.  It just turned out to be bigger than I had anticipated.  And for the first time I’ve verbalized it, e.g. to Team Tanimal.  It is such a blessing to be operating from the same information base and to be in agreement that I don’t just have a general wish to “get better” – I have specific lifestyle goals in mind.

It was part of God’s plan to keep me cognitively intact enough to communicate about this effectively and package it appropriately for public consumption.  God has made it very clear that I will not be getting what I thought I wanted but I’m confident I will be getting exactly what I was made for.  It is my privilege and joy to meet people all over the place and tell them How I Found Grace in the Valley.  In addition to  blogging I have also published 3 short books (Learning How…on Amazon) – as always, everything is completely non profit.

I write and maintain my online presence within the parameters of my physical limitations.  I am getting better and stronger, but I still feel the gnawing deficits, pain, and fatigue regularly.  I’ve had to take more time “off” from my blog etc. than I liked this year, but that’s the beauty of how this works – if my symptoms act up I can shut everything down as needed.

But I’d love to feel the weight of these limitations less and less as time progresses.  Thank you so much for your prayers and support throughout this process.  Please keep on praying – I need it more than ever!

Happy Thanksgiving.  Love, Ann|Ning

 

356.  I decided

356. I decided

Return to Oregon

  • Went back to OR for the first time in 3 years to empty out my storage garage.
  • Decided “I don’t need any of this” and my friends made things so easy by taking care of everything – thank you!!
  • Visited my 3 hospitals and thanked many kind medical professionals; saw my Intel friends – I was so glad to be with you again!
  • Saw Dr. Dogan, the surgeon who saved my life – he was pleased with my progress
  • Reunited with M, (“Molly” in my book) a patient at RIO (3rd Hospital) with me.  We conversed while lucid for the first time and apparently we’re cut from the same cloth.  God saw my need from afar off so he gave me a true friend in the unlikeliest of circumstances.
359.  Running With Myself

359. Running With Myself

ORFR

  • ORFR = Operation Run, Forrest, Run
  • Before I went back to Oregon I tried to run like I was being chased.  Now I run simply because I can
  • After more than a year I’m running longer, steeper, faster, and stronger
  • Among the benefits:  Stamina, vocal improvement, better breathing and core usage, stronger digestion (I’m eating meat after a veggie-only year); Side note re. non-cardio Strength Training: building muscle protects my joints (which are not moving in the way they were intended to), and helps compensate for the neurological deficits and fatigue
  • When I say “run” I am still dependent on a machine to help me – (I use an AlterG Anti-Gravity Treadmill, pictured).  It’s impossible to fall out.  Trust me – if it were I would’ve done it already.
Decision Day 2014

Decision Day 2014

Team Tanimal

  • Discharged from Rehab in October
  • Trainer D” – my Personal Trainer whose knowledge of brain/gait mechanics got me kicked out of rehab
  • Coach R” – Athletic Trainer to teams of pros and Olympians; he knows he’s supposed to be the grown up here and reins me in as needed
  • Gen” – my Massage Therapist; an Ortho Surgeon working pro bono; an extraordinary individual and the funniest person I’ve ever met.
  • CMD” – my Traditional Chinese Medicine doctor; wonderfully compassionate and frighteningly skilled, she’s the reason I was able to start exercising more
  • PS.  If you’re wondering what I’m wearing in this pic yes, I do shop for workout wear in the boy’s section now.

 

Ann Ning Learning How |Nonprofit books on Amazon!

These are my 3 Books on Amazon:  eligible for Prime and Super Saver Shipping.  Everything is nonprofit!

  1. Learning How…vol 1 – an easy, non threatening way to introduce people to the Gospel of Christ, and a great way to encourage believers.  Ch. 10 is when I decide the Gospel is true.  
  2. Ed Goes to DC – introduces the ideas of illness, hospitalization, friendship, and cheerfulness to kids; plus it’s just a really sweet story.  (Here’s the YouTube version)
  3. Learning How to Hope – a collection of my favorite posts from my blog.  I published this specifically for my African friends.  All of my writing is nonprofit but sales from this book in particular go straight to Burundi. (Also in Kindle format)

 

432. Rattled

Sometimes you need a helping hand.

Sometimes you need a helping hand.

I had an appointment last week that left me rattled. Upset for days – which is why I’m writing this. I’m hoping to get it out of my system. It actually really helped me to read 431. When the Journey… It hadn’t been posted yet, so I read the “draft” form I had loaded into WordPress. Remember when I said I’ve started writing for myself? I wasn’t kidding.

I spend a lot of time and energy acting like everything is fine – I project that I’m up for the challenge, mental, or physical, since this sort of behavior invites the kind of treatment I think will take me to the next level of wellness. (Side note: Since this isn’t a pretense but the result of studied effort, it’s totally working. Thanks, guys!) But the undercurrent I try to forget about is that I routinely feel unsure of myself and vulnerable while I adjust my public-facing game face and my private ruminations.

What do I mean? Well, I often have discussions that go like, Did XYZ really happen? And more often than not the answer is No, that didn’t happen – that was a dream. Or, maybe the answer is Yes – that happened while you were asleep. Either way, there are mental hiccups in my awareness that blur the line between reality and imagination that are confusing for me. There is also a sense of uneasiness around questions like, Will I return to this place? Will I see that person again? Will my leg take my weight? Will my hand do what I want it to?   This is on top of the monumental confusion that accompanied the growing understanding that this really happened when I woke up. Back then I was very passive as the medical professionals around me treated me. As I get better I’ve started seeking treatment as an active participant. Sometimes I strike gold. At other times I walk away feeling utterly helpless and exposed to the elements.

I’ve been told I used to be extremely controlled and I always presented a polished professional exterior. And then my brain bled and everything I had kept under wraps for 30 years spilled out. Hey, at least it’s entertaining.   Maybe not for me, especially at first. It’s better now since I obviously love to laugh and find plenty of fodder in RecoveryLand, but I still find it galling to undergo the scrutiny that comes with Disability paperwork reporting and giving my health history at new places. In a lot of ways my life is an open book now, but some things I still have trouble verbalizing.

But I’m getting stronger and am learning to manage my own health outcomes more so than when I used to show up at a medical office or rehab hospital simply bc my last Rehab Team told me to. (Or told my parents to.) This results in some trial and error, e.g. when I did some phone screening for Team Tanimal and talked to that person who made me so mad I had to air my grievances in 370. Sizing Up the Competition. After that experience I came home and talked to Coach R about “running” more and doubled my time at The Running Gym. I am SO happy about that decision and am grateful to Coach R and my parents for making it happen logistically :).

370.  Sizing Up the Competition | Ezra is a fierce competitor.  He loved Joe Joe my "Tackle Buddy" - and you see how that ended.

370. Sizing Up the Competition | Ezra is a fierce competitor. He loved Joe Joe my “Tackle Buddy” – and you see how that ended.

After that rattling appointment I went to see Gen, who made it better, but was still rattled enough to talk w Coach R about it a couple days later. His line of questioning indicated that he was, like me, expecting deeper answers, but by then I had synthesized my thoughts enough to summarize it succinctly within 30 seconds and he understood. He wasn’t pleased, mind you, but he understood.

Aaah, well, I dismissed it. I’ve spent the last year putting the right people in place so I wouldn’t be wholly dependent on what the healthcare system is serving up that day.

It’s true – as I’ve improved I’ve had some medical encounters lately that have left me with the feeling, Hey – glad you’re doing well…. Good luck with that. (Side note: There are exceptions to this – and I’m grateful for true interest and help when I can get them.  Also, I’m not referring to the end of my Outpatient Career.  Getting discharged from Rehab, despite my verbal bluster, is a good thing.)

398.  Water Damage | The boys at Ezra's Fire House field trip

398. Water Damage | The boys at Ezra’s Fire House field trip

But it’s also not true in that I didn’t really “put” these people in place. I might have done a little research, but I found Trainer D, Coach R, and Gen on my first try. CMD was a referral from my cousin (thanks, JE!! Xo). A month+ ago I had one of those experiences that left me feeling terrified and vulnerable – I referenced it in 411. Watchful. It took a few days but I reached the tipping point – I realized that God didn’t bring me this far for nothing, and I felt the pressure release from my heart as I remembered that I’m on the winning team here.

But even though I know God’s on my side and that’s enough, He has generously given me human proof, too. Although that situation stressed me out to the point of psychosomatic symptoms it was worth it to hear Team Tanimal’s professions of support. These people are  a hardcore combination of skillfulness and kindness.

243.  Taking Sides

243. Taking Sides

Okay, I think it’s out of my system now. I’m just trying to do my duty and go get checked out officially as I encounter well-people problems that are new to me. But the bottom line is that this is a new phase of Recovery that God has prepared me for. A couple of weeks ago Trainer D said simply, “You’re ready for this.”

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428. Well-People Problems

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Remember a while ago when I said I was “strong enough to keep on running even though my left leg was dragging pathetically on the belt”? “Strong” might not have been the best word. A couple of weeks after I wrote that post I decided I couldn’t ignore it anymore. This is what had happened (see the picture above – these were my Supple Leopard/World Cup shoes, but the left toe rubbed off entirely. This is hilariously symbolic. So ends my experiment with the minimalist style).

175.  Becoming a Supple Leopard

175. Becoming a Supple Leopard

Apparently bits of my shoe are stuck in the AlterG. Sorry, Coach R – my bad!! It took me a long time to admit that my stamina and mobility had taken a real hit. PS. I’m still “running” but I have unweighted myself so I’m much lighter and for the first time in several months I’ve noticed Coach R assume the “observing stance” common to PTs and Trainers out of the corner of my eye. Based on his comments he’s been observing all along, but I think he’s maxxed out the perimeter he’s willing to give me and is closing back in.

The fact that it took me a couple weeks to notice the uneven wear on my toes is funny but unsurprising. I often lack the self-awareness to give feedback – my Trainers have to be clairvoyant. One day I did an exercise on the right then on the left and Coach R asked me which side was harder. Left…no, right… I dunno! I thought out loud.

I got a good laugh.
Coach R: That’s the best answer ever.
Me: Seriously – how am I supposed to know?

I wasn’t trying to be funny – was that a trick question or something?

But when I showed my peeps how my pretty Supple Leopard shoes had gotten torn up they were ALL OVER the situation. Gen put her ortho hat on, made me feel better, and gave me some exercises to do. Coach R immediately instituted ankle strengthening moves we do all the time. CMD painted the herbs on really thick and has kicked the magic into high gear for the past couple months. Trainer D took a closer look at my ankle area while I was lying on a table and I saw him knit his brows and shake his head.

I asked him during the next session what that had been about.

Trainer D: You saw that?
Me: Of COURSE I saw that. I have two eyes. I’m not saying they work super well or anything, but yeah, I saw that.

So he told me that something was wrong with the muscles in my leg and ankle (surprise, surprise) and I asked what the consequences were if he just left me alone. I knew from experience that the remedy would probably hurt. Given the consequences I decided to ask him to go ahead and take care of it. It hurt like I expected but he knew I was nervous, which helped, and by then I was used to Gen’s superhuman strength and unwavering determination to put my muscles in their right places, so it wasn’t as bad as I had anticipated.

I’ve examined the set of sneakers I purchased in March/April and all of them have uneven wear on the toes. The Leopard ones are the worst since they have the thinnest soles. I wore them for a couple months for my leisurely (no treadmill) inside-the-house-exercises at Ai Ai and Tim’s and then I wore them for two months here at home. They were part of my regular rotation so yeah – it was two months of occasional wear. Two. Months.

So I’ve resigned myself to spending more money on sneakers now that I’m on my feet more and my gait is impaired so the wear is uncool. It’s October now, and the set I purchased in August is holding up okay. I was hoping to make it to October, and here we are! So now I’ve got my sights set on EOY 2014. Maybe it’s helping that I’m consistently “running” super light, and everyone is helping my ankle feel better. However, even though it’s no longer sprained apparently my Achilles and/or my posterior tibialis are messed up.

When Coach R was explaining it to me it was one of those times when I was like, Seriously, R, it’s like you’re not even speaking English right now. He then offered to “work” on it, and I said, define “work,” and when I understood his meaning I apologized beforehand for anything I might say in the ensuing 10 minutes. I survived, CMD covered everything with herbs after poking and shocking me, and charged me solemnly not to shower until tomorrow.

113.  Going Backwards (Why I like Ps 34)

113. Going Backwards (Why I like Ps 34)

So for now I’m going easier on my home exercises, concentrating on my balance and coordination, elevating the left foot whenever possible, and trying not to make things any worse. As it stands I’ve got plenty of supervision, and overall I’m glad to experience hiccups like these as opposed to the more serious setbacks that litter the road in RecoveryLand. Trainer D calls stuff like this “well-people problems.” For me, the fact that I’m well enough to have issues like this is a-okay. My shoe-wear problem stems from the fact that I had a stroke that impacted my left side more than my right, but it also indicates that I’m using my legs enough for it to show. I read LH to… Hope for the first time in a while and remembered that in March 2013 my back was acting up so badly I had to take time off, go lie on the Ceragem bed just to make it past 6pm and took painkillers before going to Planet Rehab even though they made me sleepy. M37 let me lie down once during that period bc she felt SO sorry for me. I had tried to grasp a stair railing during a rest break and completely missed. She then let me lie on a mat for 10 minutes before sending me to The Pool. But now my muscles are so much stronger, plus I know how to manage them and my energy better. Yay!

Available on Amazon in paperback and Kindle

Available on Amazon in paperback and Kindle

Hey, Mommy, look – I have well-people problems!!

Ann Ning Learning How |Nonprofit books on Amazon!

426. Hungry

Cheekiness - it's all in the eyes.

Cheekiness – it’s all in the eyes.

I just saw Gen this morning. My ankle has been bothering me – apparently my Achilles is compromised. Gen felt what Trainer D identified visually on Monday while supervising me on the treadmill. We’ll see what Coach R and CMD have to say. That bump on my left knee has started to hurt, so that’s not great either. But I’m going to try the stretching exercises she gave me and we’ll re evaluate in a week since she’s not a fan of my desire to wrap it up with a brace as this might cause the quad to lock up even more, and it’s already very tight.

Yep, it’s another great day in RecoveryLand! I like to tell Coach R that when I almost fall over, have a brain misfiring moment, or just need a few more seconds to lie on the table. But actually, I’m not being facetious right now. Yes, my leg is being uncooperative but after I saw Gen I got to go to the supermarket with Mommy and we are now home on this extremely rainy day and I get to have a nap prior to my Managing Me exercises. It’s the triumph of the mundane – so yeah, it really is another great day in RecoveryLand.

248.  Pumping Iron

248. Pumping Iron

Although I’ve been having some physical wear and tear I’ve mentioned that it’s really important to me to keep on doing this. One of the reasons is my appetite. About a year ago I did my Vegan Experiment. I felt really good since I wasn’t overburdening my digestive system.

Click for vegan recipes!

Click for vegan recipes!

I have gradually eased up on the veganism but at first I couldn’t even eat too many raw foods or protein-rich plant foods like beans or tofu bc CMD could tell by my tongue that I wasn’t digesting properly. Then I prepared to go to Oregon and the eating thing really deteriorated. CMD gave me a Ziploc bag full of tree-like herbs meant to cure my nausea. Coach R left me alone on the AlterG to relax. Even Trainer D didn’t fuss with me about my diet when I told him I was stressed.

This summer I started incorporating some fish into my diet after ORFR really took off at Boo Boo’s house. A couple of weeks ago I took the plunge and started eating meat for real. Red meat. Bison, to be specific.

The result of having a Monday double-header (Trainer D and then Coach R) is that I am exhausted (I shower and then take a long nap) and famished (I eat lunch, too). I have not been hungry for a while. I have instinctively thought it might be good to eat some animal protein (I was hoping it would help with my fatigue), but my latest round of blood work indicated that yes, this would not just be “nice,” it was strongly recommended.

We didn’t talk about eating meat, actually – it’s just that I’m trying to take a more natural path before trying the iron supplements my PCP told me about. I’m also drinking an herbal mulberry-infused tea CMD gave me that’s supposed to help.

So far it’s going great – I’m still moderating the carnivorous activity but Mommy and Daddy are happy to see me eating some meat and Trainer D is a happy camper and no longer gets on my case re. my amino acid profile. The “running” thing definitely helps. Just like I can feel how it helps me use the air in my lungs more effectively I know it’s helping my body use fuel more appropriately.

Wow – I thought I messed up my metabolism that time I was a little scrawny in my early-mid twenties. That was nothing compared to the impact of the AVM Rupture and stroke. But anyway, I have enjoyed my first week of freedom sans Rehab. I was discharged last Wednesday and Mommy and I went to breakfast to celebrate. I had this:

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Although I’m technically Rehab-free I am still heavily scheduled. This was intentional on my part. The next day I went to The Running Gym where I had a good “run” and Coach R was in fine form. Mommy and I then had lunch and I had a salad (I avoided salads for a long time bc they are raw) with steak on it:

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Things are looking up.

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418. You’re pushing it

Post Swimming Lesson

Post Swimming Lesson

When I started researching post-Rehab exercise options in 2013 I looked at a gym’s website and clicked on “ Stroke Clinic.”

Sigh. It was for people wanting to work on their swimming form, not for brain injury survivors like me.

I guess I only have one kind of stroke on my mind these days, which is why logic took a vacation. But last week there was an encouraging sign when I saw the Physiatrist to hear about my not-bones.

We were discussing whether I should get an MRI of my shoulder. (I opined strongly that it was unnecessary and was ultimately successful. I am my father’s daughter – my persuasive power is not to be underestimated.)

393.  Skill Set

393. Skill Set

 Do you have a clip? She asked.

No, I replied, tipping my head downward so she could see my headband. It’s just elastic.

After a few minutes I was like, Oooohhh – you meant an aneurysm clip, like in my brain! I thought you were asking what was I wearing in my hair.

Bahahahahaha!! My bad. I misunderstood the question. My POV (point of view) is heavily colored by my injury, but not always. 🙂

It was a good visit. I was glad to get a good report on my x-ray results last week (my bones are good!) and I hoped to get a similarly optimistic professional opinion on my soft tissue. This opinion, however, was not forthcoming.

I cannot say that I received medical clearance to continue exercising. I did, however, get a good dose of perspective from a doctor who earned my respect as a physician, athlete, and a person in less than an hour. Plus, she didn’t say, “No.”

She’s concerned that I’m pushing it. Admittedly, I am pushing it. I see my Trainers 3-4x/week, and I’m concentrating on building muscle, “running” stronger, longer, steeper, and faster. Trainer D doesn’t know about the “faster” thing. He told me to leave the speed alone, but I don’t think he really meant it. Anyway, Coach R knows, and I’m taking my 0.1 increment approach. I’ll tell D after I reach my next milestone. That’s how I roll.

She saw that I had basically shaded both sides of all the pain figurine diagrams on my questionnaire, and I guess that was a red flag to her. Two years ago, when the hemiparesis surfaced but I couldn’t find any relief (this was prior to acupuncture) I had accepted a certain level of pain as inevitable and toddled along as best as I could. Her concern is that I might see some gains now, but I might pay for it later.

Then came the bit about how substantive gains come early in Recovery. She said 18 months, whereas I’ve most often heard 12. Either way, I’m obviously waaaay beyond that (3.5 years).

This isn’t news to me. It wasn’t a shock like the first time I heard a POV that was less optimistic than I had hoped. But it still feels like an elephant sat down on my heart when I get an opinion like this.

So how we left it was that I was supposed to consider scaling back. Let me say again that she’s an athlete – I sensed zero aversion to exertion – she was just cautioning me bc of what she’s seen personally and professionally.

Well, I considered it. And I’m not stopping. Of course I would have loved to have received medical clearance to exercise, and still advise people to do so, but midway through the appointment I gauged the situation and concluded that I would not be able to bend this doctor to my will. So I abandoned my plan of trying to force the issue.

Again, she didn’t say, “No,” so I’m using my own judgment here since nothing is growing in my brain that shouldn’t be. As I told Coach R prior to Oregon as part of a heartbreaking conversation re. emergency preparedness, My scans are clean… I will not be bleeding again, and in that sense I am comfortable with the level of medical assurance I’ve received thus far that exertion is fine for my brain and my body.

Apart from the brain-related risk, the other huge issue in my mind is that every medical provider I’ve seen on the East Coast has a very different POV from those who treated me in Portland. No one here saw me when I first got sick. There has been a lot of emphasis on death and dying (not just of brain cells but of me), and my parents were told I was half-dead by the time I made it to surgery.

By the time I went home from RIO (3rd Hospital) after a month-long crash course in being awake post-AVM and stroke, my PT said, This is like working with a completely different person.

Over three more years have passed and I’ve come a long way. And the reason I’m pursuing Recovery at this pace is bc I’m not seeing negligible gains, I’m seeing big ones that are crucial to the lifestyle I want to lead and the calling I’m finally admitting is mine. As I’ve gotten more of a handle on just how bad the situation was I am increasingly convinced that there is an extremely high degree of Divine Intervention going on here that makes all of this uncertain. Medical people have referred to my case as interesting, exceeds expectations, and remarkable. Laypeople tend to use the word miracle.

Further, I can’t say enough about the psychological benefits of exertion in my case. After I went to Oregon we went straight to Boo Boo’s house and I slept and cried for 2 weeks bc I finally had time to think about what just happened. One day I went to the kitchen and sobbed on Mommy’s shoulder saying pathetically, All my pretty things (wah)! I was missing my teacups and dishes so badly bc I had just given them all away.

361.  Priorities

361. Priorities

 

Then I decided it was time to get back to work. I showed up at The Southern Gym when they moved back in. At first I ran bc I felt like something was chasing me. By the end of that first week I finally no longer felt like I was trying to outrun something.

359.  Running With Myself

359. Running With Myself

So I’m going to keep on going. For the first time the things that are making be better are the things I sought independently, not bc a doctor said so. I’ve taken great pains to become a productive member of society within the physical limitations that are mine. I’m still progressing but I’ve realized that significant gains in RecoveryLand come at a physical cost. That said, when I look at the events of this past summer, for instance, when I felt fantastic in June and July but tanked in August and September, I’d do everything over in a heartbeat.

I’ve talked to my Trainers about this and am confident in their expertise in terms of physicality, safety, and caution. CMD keeps me on a real short leash and Gen informed me last week (after she said my ankle was better) that she’d be all up on me re. getting checked out by the ENT.

So I’m in good hands. That’s the update on what’s been happening in RecoveryLand. As always, thanks for praying – I need it more than ever!

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