433. Welcome Home

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One of the most astounding parts of living in RecoveryLand is that I’ve made new friends here. Some of them are healthy, some of them are/have been ill, and all of them make RecoveryLand a more interesting and fun place. One of them is coming home this week.

Actually, I’ve only ever “met” his wife, D (online). I was just getting over my Oregon Trip and one morning I woke up at Boo Boo’s and saw a message on my phone from AVMSurvivors.org – it was an SOS message from D, detailing how they were just moving out of the Neuro ICU into another unit (I think) and how it was scary bc all the nurses were new, and she wasn’t sure how her husband, S, the one who had the huge AVM, would handle it. I shot out of bed and typed a reply bc I know what that feels like.

Spoiler Alert: he’s handled it, and every subsequent transition, quite well, thank you, with D at his side. I almost fainted the morning I read that S walked (with a walker). They’ve been at this for more than 6 months. Life has been turned upside down and they’re getting ready to find a New Normal as he begins his outpatient career. Right now they’re at their last stop before the Big Move Home: a Rehab hospital people said he’d never make it to.

Mm hmm. Well, he made it. And you know what? He’s going home. S and D are the latest in a string of dynamic duos I’ve been privileged to meet in RecoveryLand – people who really meant the “in sickness and in health” vow, and have executed (and continue to execute) it with humor and grace.

If you are one of these people, thank you for your example.

And to S and D: Welcome home.

PS.   The line, “Now you can do whatever you want!” in Ed’s sign above is a reference to my post a few weeks ago.  When I was preparing to be discharged from RIO (3rd Hospital) I told Mommy gleefully, Hey, Mommy, now we can do WHATEVER we want!!! Mommy was like, No, that’s actually not what that means.

When I reminded her of that incident she cracked me up by telling me my voice was so full of HOPE.  :)  I love you, Mom.  Thanks for putting up with my shenanigans.

 

419.  Nothing Happened

419. Nothing Happened

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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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431. When the Journey is too Great for You

When the journey is too great for thee

Sometimes I think to myself, I know – I’ll wear that shirt. Or, That dish would be perfect. And then it hits me like a ton of bricks. I used to have that shirt, dish, book, gadget, life.

A while ago I gathered enough courage to open a little shoe box full of the “junk drawer” bits and pieces from my apartment. The shoe box was from my last Zappos order when I was well – when I ordered “Missionary Sandals.” The serviceability of red patent leather is debatable, but whatever. Moot point.

I opened the box long enough to fish out the picture frame (above) the movers must have taken from my countertop and put in the box for me. Then I closed the lid and didn’t want to look at any of that stuff anymore bc I was too sad.

I remember the day that photo arrived. Karine had chosen that frame especially for me. I displayed it proudly and taped pictures of a pasta acorn and other works of art from my children to the wall. Now I like to put her picture in front of me to cheer me up while I eat.   It’s impossible not to smile back at that little round face that is so skinny now. Sigh. She was only 4 when I got sick. Now she’s 8. We went to the American Girl store to celebrate her 5th birthday soon after I came home. It was my first outing in my wheelchair. It was worth it to see Tanpo eating star and heart fruit kabobs with great solemnity.

Learning How….vol 1 on Amazon

Learning How….vol 1 on Amazon

Sometimes life is tough. I get it. I wrote in my Memoirs that I considered holding my breath until this was all over but I read once that if you tried that your body would knock itself out and start breathing again as a self-defense mechanism, so that wouldn’t work. I’ve considered the staying in bed with the covers over my head route but I spent enough time in bed as an inpatient (and an early outpatient) and trust me on this one – it gets boring. So if you know anyone who is bedridden from illness, think about how you could brighten his or her day. :)

Meanwhile, there are plenty of able-bodied people in the world who struggle to get out of bed in the morning simply bc the weight of life’s responsibilities is so crushing. I am truly thankful that I decided the Gospel is true bc that means I have unlimited power and joy resources at my disposal. I’m still working on accessing them effectively – c’mon, don’t you think it’s more fun to worry unnecessarily?

165.  How to Get a Heart Tranplant

165. How to Get a Heart Tranplant

But I appreciate that scripture acknowledges that sometimes “the journey is too great for thee.” This is what happened to Elijah in I Kings 19. I used to lie in my car (seat reclined) at 6am in the parking garage in DC listening to this message by KRK. That was the time I was stressing myself out crazily, I ended up a little scrawny, and I stubbornly insisted that if I just woke up a little earlier I could get everything done. (Spoiler alert: I never finished it all.)

115.  How to Fight the Good Fight

115. How to Fight the Good Fight

Elijah, after a great spiritual triumph, is gripped by fear when Jezebel goes on an intimidation campaign-killing spree and marks him as next. He actually lies down under a tree and prays for death. But you know what? God provides food for Elijah that fuels him for the next 40 days until he reaches Mount Horeb. In the same way, food is ready for us – but you still gotta get up and eat.

Arise and eat; because the journey is too great for thee. I Kings 19.7

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430. Hey, Daddy – High Five!

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A long time ago Ernie brought Karine and Ezra to visit us while Ruthie was away (this was before Peter was born). This was the time we ate ice cream and went to Whole Foods where I rode the escalator. Since then I’ve practiced a lot with Mommy, J, and Boo Boo. A couple weeks ago I had lunch with a two friends and their daughters. The little girl in the pic below wanted to ride the escalator while her mom and aunt were busy wrangling the baby, so I volunteered to go with her. We went up and down without incident except midway through I heard a whistling noise from above – Mommy had arrived just in time to see me joy riding alone. Technically, I was not alone – I was being supervised by a three year old. But she was too short for Mommy to see. Mmm hmm. My friends are so funny. They had refused to leave me unattended, but the moment I break loose Mommy shows up. :).

49.  Did she really just say that?

49. Did she really just say that?

Anyway, Ezra was eating noodles or something for dinner and after he took one bite he was so pleased that it tasted so good he leaned over, kneeling on his chair, extended his right hand in the air and said in the classic Ezzie-voice, Hey, Daddy – High five!!

This summer, Josh took one bite of his popiah and immediately left his chair to do a victory lap around the kitchen.

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Way to go, Mommy –Baker Smurf doesn’t just bake.

The picture up top is one of my favorites of Hannah and Tanpo. We went to eat dim sum and my baby big girl Hannah enjoys culinary adventures. She loves eating fun things with Tanpo. One time before I got sick they sat side by side at a favorite restaurant, giving each other congratulatory high-fives on eating an appalling amount of lobster – stir fried “Thai style.”

While we were on vacation together this summer we went to a huge Asian buffet and I just heard her sweet voice ringing out from behind the pile of everyone’s dishes and plates, I love you, Grampo!!

See? I told you Tans train their young to eat the Tan Family way.

389.  We are Tans

389. We are Tans

 

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429. I Don’t Want Your Pity.

A few months ago a friend who was new to RecoveryLand verbalized a problem I instinctively felt at the beginning, but never gave voice to. When everything is different about your physical situation and as you adjust to being noticed in passing and actively observed you start feeling the fleeting glances and intent stares even if (a) you don’t have the visual skills to actually see them or (b) you’re just imagining people are looking bc you feel so terribly conspicuous and your insides cry out, I don’t want your pity!

Even after 3 years I still struggled with this idea. When I told Gen about my “interview” at The Gym when I said, You ready to let all this loose up in your facility? She laughed, called me crazy (takes one to know one) and said, You really go for shock value, don’t you?

298.  Somebody - PLEASE just tell me what to do.

298. Somebody – PLEASE just tell me what to do.

Not even, I replied. Seriously, I was trying to give them a chance to tell me to go home and sit down quietly for my own safety. I told Coach R, That’s why I entered [the Running Gym] so cautiously. Experience has taught me to be prepared for people to be like, Quick!! Bring the waiver!!!

So I’ve practiced hard on signaling to the market prior to entering the Post-Rehab world. But around the time we went to Oregon I had that huge realization that I didn’t want my Game Face to become my Permanent Face. Remember that time I saw the ceiling at The Gym and freaked out? It took me a couple of days to eventually tell Mommy about it, and a couple of weeks later it happened again and I told Trainer D. I decided I wanted to practice talking about sad stuff bc it is what it is – it’s a part of me, and by talking about it I get to control how the memory exists in my own mind and how to represent it to other people.

348.  What's This Going to Look Like?

348. What’s This Going to Look Like?

My philosophy now is that although I don’t want your pity, it’s inevitable that sometimes people will in fact, feel sorry for me. This usually manifests itself in acts of courtesy many people usually don’t take time for. I decided I’m cool with that. Although I will do my utmost not to invite pity, it’s my job to honor the kindness motivating you to run and open the door for me, or to give me your seat.

401.  This is how Tans go on vacation

401. This is how Tans go on vacation

There are some exceptions to the not inviting pity thing, e.g. when I’m so far gone I don’t care – I want you to feel sorry for me, and PS. Would you please carry me around, or choose someone on your staff to do so (you seem to have a superabundance of interns). But most of the time, when I’m feeling pretty well and thinking, hey, I’m lookin’ pretty good today (mobility-wise), and then the guy cleaning the floor leaves his mop to come hold my hand so I don’t slip (true story – ask Hannah and Boo Boo), I am really thankful that I still have the mental capacity to recognize that situation for what it is: Compassion.

9.  Can I hold your hand?  (What's your name?) | Hannah: "What's 'considerate' lie?"

9. Can I hold your hand? (What’s your name?) | Hannah: “What’s ‘considerate’ like?”

 

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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!

427. Week 1 of Freedom

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My first week of Freedom is over.  When big transitions have come into my life in the past I experienced a nervous sort of excitement. This time I’ve had a year to prepare and have built a routine of expert-supervised exertion.  The great news is that I’m not nervous, I’m comfortable.

When I left my job and went back to school I woke up on the  first day I didn’t have to go to work and savored the thrill of getting to spend the day however I chose.  I was similarly exhilarated when I moved to Oregon.  I slept on the floor of my empty apartment (the moving truck hadn’t arrived there), cooked everything in one pot I bought from Target, and ate it off of my lone plate with my solitary fork.  It was a fresh start – I had not anticipated that I would get such an opportunity, but I did.  Yes, I cried for about three months straight as I adjusted to life away from my family, but in the end I loved it.

A friend told me recently, There’s an open door in front of you.  Don’t be afraid to step through it.

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