41. One Leg at a Time

One leg at a time

What stretching used to look like for me
(FYI I was a crummy gymnast – too tall and heavy to get airborne properly)

I decided to post this bc I had a really tough time putting on my pajama pants last night.  #truestory

Originally posted 11.16.12 – I shared a room with a bunch of girls when we were all teenagers at a conference eons ago. One morning I was all ready except I decided I needed to change my pants. So I sat on the bed and shoved both legs simultaneously into a different pair of jeans. I then noticed my friend, A, laughing in the corner of the room. I asked her what was so funny and she said, “Most people put their pants on one leg at a time.”

I had some sort of subconscious notion that this was the accepted way of putting pants on, but my two-legged method had worked for more than a decade, and no one had been there to observe and correct the technique I had developed when left to my own devices. I will admit, though, that it’s probably symbolic of how I do things in general. Did things, I should say.

For several months I was unable to dress myself independently at all, much less put on a pair of pants with both legs at once. OT3 once asked me if I remembered having to get dressed while still lying in bed at the 3rd Hospital. I didn’t know that was even possible, and no, I had no recollection of doing any such thing. She told me not to worry – lots of people block the early days of their stay out.

Then I had a breakthrough: a while after we came home I was strong enough for OT6 to teach me to put on a pair of pants while staying in my wheelchair. To be more accurate, you kind of have to hold your body suspended over the seat (you get to use an arm to prop yourself up) long enough to dress properly. Once she taught me this technique, my independence factor soared. I do, however, employ the one leg at a time rule now.

My left leg has been acting up lately, and the “Ouch” reminds me of the focus I’m supposed to put on it in general. When I first woke up I wasn’t aware enough to know that my left side was problematic (I thought I could still walk). I just remember PT2 teaching Mom and Dad to always stand on my left since I tended to stray in that direction.

By the time I got to The Place I had improved enough that I didn’t veer leftwards often at all. Near the end of 2011, though, my left leg began to be uncooperative. The first time was when PT6 told me to practice climbing the stairs by taking two at a time on the way up. My right leg carried me upwards with no problem, but when I shifted to my left leg it crumpled up under my weight. Good thing PT6 was paying close attention since he had to catch my gait belt and haul me up the stairs. The second time was when we were doing a kneeling exercise. I was supposed to switch from kneeling on both knees to raising one leg up so I was resting only on one knee. Raising my right leg was uneventful, but I needed some special coaching to get that left one up, and once it was up we both noticed that it was hovering strangely in the air for longer than was normal before I set it on the mat.

Fast-forward 8-9 months. At The New Place PT30 would stand behind me in the parallel bars and tell me to shift my weight from side to side. One day PT29 was facing me and observing the weight-shifting. It took her 2 seconds to note that shifting to my right was no problem but when it was time to shift to my left I kind of stopped at midline then catapulted my weight onto my left leg instead of using a nice fluid motion. I had no idea I was doing this. Even after she told me what she observed I couldn’t see it in the mirror that sat at the end of the parallel bars – I just took her word for it. So PT30 kept making me do all these crazy balance exercises in the bars and PT29 showed me how to stand in a corner (good for home exercise) and practice standing on one leg.

These days PT38 makes me stand on one leg in the pool and PT37 will say things like, “Get that left leg on board” (with whatever we’re doing). Thanks to PT29 I’ve finally noticed that when I wash my hands in the sink I automatically put more weight on my right leg so I try to even the distribution out, and I think hard about how I get out of a chair so that I’m using my left leg more than in the past. The problem is that I never know if it’s going to take my weight or collapse like a card table being folded up. It’s the not knowing that makes me nervous. Things go better if I’m not thinking about weight-bearing and I just do XYZ, and most of the time my leg is okay.

I grew up surrounded by the notion that if you believe that what you believe is the truth, then it’s okay – those beliefs can stand up under the weight of hard questions. It wasn’t until I was grown up, though, that I asked some of those hard questions myself. I am happy to report that my beliefs exhibited good weight-bearing. Now it’s just my leg I have to be concerned about.

425. It’s Official

Ed in the Lobby after we got kicked out of Rehab

Ed in the Lobby after we got kicked out of Rehab

It’s official – I got kicked out of Rehab last week. This is the first time I have truly been cut loose. Rehabilitation is the only thing I’ve known since I woke up in this situation. This is a big deal bc when I got transplanted to RecoveryLand my understanding was that As long as I’m in Therapy/Rehab I’ll be getting better. Well, I’m 3.5 years post-AVM and my formal Rehabilitation is over. That’s okay, though, bc I’ve spent the last year building the infrastructure for my long-term Recovery and recent bumps in the road have only made me more thankful that God brought me extremely skilled and caring people.

This did not deter me, however, from going to my appointment at The Gym directly after getting kicked out of Rehab and being mean to Trainer D. This was in violation of the fact that I had previously vowed to be nice to him bc I thought it was his birthday. Actually no, I didn’t say I’d be nice, I just said “I will not antagonize you…” but it turned out that I got the date wrong and now I have to not antagonize him for a lot longer than I originally thought. I did clarify, however, that accidents happen (Oooh, did I say that out loud? I hate it when that happens. My bad.), and that I have a brain injury. Also, let me remind you that I am not holding Trainer D responsible for this haphazardly. I know this is his doing bc of my retrospective sensitivity analysis. I used to do this for a living, people.

352.  Ed Says, "Well, that backfired, didn't it?"

352. Ed Says, “Well, that backfired, didn’t it?”

There was no sense of panic like when A6 discharged me from The Place. Back then I cried in private for the 2 months he prepped me for my exit, my blood pressure skyrocketed, and I practiced all this stuff I wasn’t supposed to do on my own hoping I could force me body to a higher level so I could continue PT.

69.  Williamsburg - Taliaferro-Cole Summer Garden by NH

69. Williamsburg – Taliaferro-Cole Summer Garden
by NH

Yeah, that didn’t go as planned. Dr. A6 Frankenstein kicked me out anyway on the understanding that I was supposed to go back for more when the time was right. Well, I’ve been a Physical Therapy patient at 3 other locations since then, and now I have 2 Gyms, too.   When my PT discharged me she said, I think you knew….

Why do you think Ed is here? I affirmed. He was lying on the treatment table bc he had come for moral support. We had seen K our ST in the waiting room a few minutes before.

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Hi, Ed! She greeted him. Do you have a procedure today, Ann? (She only sees Ed when I have a procedure, e.g. when I have to go to the ENT.)

No, I said, Ed’s here bc we have a bad feeling about this. We’re probably getting kicked out today.

I was actually very encouraged bc my PT said that the change in me was 180 degrees since we met a year ago. I look and move differently – she even thinks my vision is better, too. Really? How? I asked. Well, you’re not running into things anymore. 🙂

She did, however, express some concern that I might be a little too intense (my word – her phrase was funnier) about Recovery. I was like, Oh no, see – I was totally like this BEFORE I got sick, too!

Doesn’t that make sense? I asked Coach R the next day. He agreed.

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33. *Are you using your core?!? *

Tall Tall Tall like a Tree Tree Tree
This was my favorite walking path in OR

Originally posted Nov ’12.  This is my favorite Dr. Frankenstein story ever.  I was finished with one exercise one day at The Place so PT6 cast his eyes around the room and said (kind of to himself), “Let’s try…”

“Uh oh,” I thought. “I know that tone of voice.” At that time I still looked down a lot but as I sat on the mat I saw a giant blue blob approach out of the right corner of my eye. It was PT6 – he was toting a large blue bolster down the aisle. He told me that I was supposed to sit on the bolster (a sausage-shaped padded form) with my legs extended and use my core muscles to stay on.

The first challenge was to somehow get myself on the bolster. I’m not as limber as I used to be and my injury has made even turning over in bed a challenge, so hoisting myself onto that blue cylinder while it was rolling around was hard, even though PT6 was trying to hold it still for me. Once I was on board with legs sticking out straight in front of me I tried with all my might to stay on the bolster. PT6 was right behind me, trying to calm the spastic rolling that was going on. Suddenly I heard him speak somewhere in the vicinity of my left ear: “Are you using your core?”

I was straining so hard I thought I had pulled a stomach muscle, but I mustered enough energy to breathe a meek, “Yes,” and refocused on staying on the bolster. On the inside I was thinking, “This was your idea in the first place!”

I’ve asked several of my PT’s and the consensus is that I need a strong core since lying in my hospital bed for a long time invited atrophy into my situation, and a strong core is also supposed to help compensate for my ataxia. More simply put, I think of it as helping me with my “wiggle – wobble” problem.

PT37 has come up with some core exercises I hadn’t encountered before, and a couple of weeks ago I finished up a set and she asked, “How do you feel?”

“I have abs of steel,” I told her, “Except they’re covered in some extra layers so you can’t tell.” We both laughed and then I think she confiscated my cane so we could do something else. At that point I was no longer laughing.

I am so used to being told to use my core that it is one of the mental refrains that form the soundtrack of my life now. The first time I stood up PT1 told me to be “Tall tall tall like a tree tree tree.” I was still in a mental fog, but I understood what she was saying and the sing-song repetition stuck with me. My core is like that figurative tree trunk and I have found that it really is helpful to engage those muscles when walking – it helps me walk faster and fall less.

The “solution” of using your core is so prevalent in my life I now look on it as the answer to almost anything. Are you wondering if you should go shopping on Black Friday? Use your core. Does your elbow hurt? Use your core. Do you want fries or apple slices with that? (cough *fries* cough) Use your core.

You get the idea. Seriously, though – the concept of core usage merits consideration by everyone, I think. Since when you come up against a crisis in your life, or find yourself between a rock and a hard place at work your actions will likely be informed by your core values. Even if you’re not in crisis mode now, you will be sooner or later…that’s just what life on Earth is like. So it’s a good idea to sort out those core beliefs before hand.

You're never too young... || Ann Ning Learning How

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195. “I’m not doing that.” Never mind – I am.

Community Reintegration|| Supermarket PT || Ann Ning Learning How

Originally Posted 6.19.13.  This is a follow-up to yesterday’s post.  See?  I told you I couldn’t make this stuff up.  Last Saturday I went on a field trip with M (37). A friend, J, recently moved to the D.C. area and needed some groceries from the Asian market. Being from the suburbs, we naturally only frequent suburban stores – this turned out to be okay since Chinatown wasn’t yielding the necessary goods. Mommy suggested a big store in Rockville. I’ve only been there once and I thought that was enough – because it’s crowded and there’s the potential for jostling, and I witnessed questionable consumer behavior in the baked goods case. Mmm hmm. (Tip: In case you don’t already do this, when getting anything from a self-serve case, reach for the items at the back.) Mommy used to threaten that she’d take me there for “Supermarket” Therapy one day. M made good on that threat and decided to make this a dual-purpose trip. She’d give J a ride to the Chinese Store (referred to generically as the “Chinese Store.” JLSS and Dr. SJ told me on Sunday that they do this, too – they don’t refer to the store by name, they just say, the “Indian Store.”), and I’d meet her there for what she referred to as “Community Reintegration.” I wore a gait belt and she held Leo (see?)

Leo at the Supermarket || Ann Ning Learning How

And we marched around all the most crowded aisles I was trying to avoid, but she thought were good challenges. J got some groceries, so did Mommy, and so did we, for that matter. Notably, Mommy said a fight almost broke out in the bakery section (thankfully M and I were in the tea aisle at the time), and this was not the first time she had witnessed an altercation there.

A few weeks ago Mom came home one day, frustrated by how busy her shopping trip had been. People were shopping by the busload, she told me. At first I thought she was kidding, but she explained that she meant it literally. Apparently there are some Chinese senior centers around or something, and they occasionally fill a few buses and make a shopping trip in the morning. When I heard this my eyes got big and I mentally vowed never to go to this store again. But M had other ideas – plus she suggested we go on a Saturday morning (prime shopping time)! Horrors. I got over it, though, and I made it through an expedition I thought I’d never participate in.

I had to smile even though Leo got confiscated in the parking lot because when I left The Place, A (6) charged me to keep on going to the supermarket and push a cart as exercise.

9.  Can I hold your hand?  (What's your name?)

9. Can I hold your hand? (What’s your name?)

I assumed he liked this exercise since it offered me support but also let me stand upright and have a more natural gait than when I used an actual assistive device. I used to go to a big discount supermarket near my apartment in Oregon and would get so frustrated because they only had carts, no baskets, and I would inevitably get stuck behind someone who made an excruciatingly long decision over the right can of beans to purchase. I eventually started carrying my own basket, but one night a friend at my Niteline Bible Study told me, See, there will come a time when that shopping cart becomes like a walker, and you’ll say, “Great idea, honey, lemme get one, too!”

I have thought about how B told me that 2+ years ago and I laughed and laughed. Because it is true – it became true for me (except for the “honey” part) a lot sooner than expected, but what was conventional wisdom turned out to be a legitimate gait training exercise.

On Saturday, though, J and Mommy needed carts for their groceries, but I didn’t get one. Since M was there I walked along without a cart. Yes, I got a few interested looks, but it was actually really nice to be free of the cart. It allowed us to walk around a lot of places since I wasn’t attached to anything. So I’ve graduated from pushing that huge shopping cart around the hospital to walking around a real store without anything – that’s progress. But what’s even more significant to me is the change in my thought processes. This is what it used to be like:

59. “I’m not doing that.”

I'm not doing that || Ann Ning Learning How

But now I’m like, “Okay, whatevs.”
I know who calls the shots here.

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330. WHERE do I find these people?!?!?

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I like to tell M(37) and Trainer D/Mr. Miyagi about each other since I think they will be entertained by our shenanigans (the things they make me do).  BTW it is one of the great and unexpected joys of my life that I still get to see M (37) even though she’s no longer my PT.  The fact that she is a fixture in RecoveryLand ranks right up there with how I get to “talk” to M, my friend from RIO.  Fun Times, people, Fun Times.

59.  I'm not doing that.

59. I’m not doing that.

Anyway, I recently asked M(37) if she remembered the post, “I’m not doing that” and if she recalled saying that I tell her a lot of jokes.  Answer:  no, she did not remember saying any such thing.  So I gave her an illustration.

Example:  “I want to lie down.”

That’s not funny. 

That’s just true.

I told Trainer D that one.  He quite liked it.  I’ve had occasion to use similar lines on both of them.  E.g. one day I was doing squats or something in the parallel bars, and I called to M, who was sitting on a stool on the far end,

Hey, M – remember that time you said you were going to be nice to me?  [Subtext: Did you forget?]

PS she really did say she was going to be nice to me that day – I think I told her I wasn’t feeling well.  Her sympathy waned as the session progressed.

Trainer D has openly admitted  [warned me] that his accuracy at counting reps probably isn’t the most reliable.  Mm hmm.  You’re telling this to the girl with the brain injury who can’t keep track anyway.  Great.  I told him about how A (6)’s seconds were longer than human seconds (when he wasn’t looking at his watch and was telling me to do something and hold for X), so D often uses a stopwatch so we’re clear – but when counting reps all bets are off. I’m not the best counter at this point, and really, do I have to do everything around here?

One day I was hauling some kettlebells around and Trainer D said that this was going to be the last time I had to do this.  He also promised to find some bales of hay so I had something to look forward to.  :/

I dutifully started walking, heavily weighted, while he pointed to the space right in front of him and said encouragingly, Right here!  I was like, Ummm…I know – I’m trying.  I can see you and I’m aiming for the middle, promise.  Maybe if I didn’t have to carry all this it would be easier.

At the end of the line we turned around and kept on walking.

Hey, D, I called, Remember the time you said that this was my last set?

We both laughed and he took the kettlebells from me.  Mission accomplished.

Last week while I got to rest after the kettlebell gait training exercise I told him about my latest conversation with M (37).

Me: I always see lots of people lying down at PT…why is that never me?

M37:  We’re working on your endurance.  (Side note:  I am grateful to be able to build endurance but sometimes I’d rather just take a nap.)

Me:  But really, lots of people are lying down.

M37:  It could be for several reasons – e.g. they’re working their core on the mat.

Me: (pressing the issue) No, but really – I mean like with a heating pad.

M37:  Because they’re in pain.

Me:  I’m in pain.

M37:  Mm hmm.

When she just smiled and said, Mm hmm, I was like, Why do I even bother?  And Seriously?  Where do I find these people?!

And then I remembered – as soon as I was able to understand what was at stake I began asking God to send me the right people to help me.  It just so happens that the “right people” have all been fantastic, although I’ve been trying over the past several months not to have unreasonably high expectations…But they just keep on being good at what they do!  Before I was able to ask He just lined up a bunch of highly proficient practitioners for me to meet as I got acclimated to life in RecoveryLand.

You gotta be careful, M joked, you might get more than you ask for.  I am so thankful that I have.

321. Emotionless

This is the most relaxed I've ever been.

This is the most relaxed I’ve ever been.

I have many funny stories from my days at The Place. Many of them involve A(6, Dr. Frankenstein), and I talk about them more – although my days in OT and ST produced many memorable moments – since PT stressed me out the most and therefore yielded the funniest situations. The thing is that A (6) didn’t think they were funny at the time. Nor did I. A’s demeanor was always very matter of fact. In retrospect his delivery was unintentionally deadpan.

Example: Near the end of my outpatient stint we were doing a monthly evaluation and after the strength testing etc. (Me: Is this the part where I beat you up? A(6): No. Me: Oh, okay – I was just checking to see if anything changed.) it was time for standing balance. I stood in front of him (I forget if he told me to put my feet closer together so I had a narrower stance – this might have been too advanced at this point) and A said in a “thinking out loud” sort of voice that indicated we were going to stray from the usual path a little,

“…Close your eyes…I just want to see…[if you can keep your balance.]”

At that point in my Jedi Training I was following instructions (almost) without question so I immediately closed my eyes.

One second later I felt my shoulder hit something. It was A. My awareness of where my body is in space was even worse then so I didn’t know I was falling and didn’t realize I had fallen until I felt A prop me up.

15.  I have no idea where my body is in space

15. I have no idea where my body is in space

Okay…no,” A said in a voice completely devoid of emotion.

Ba ha ha ha ha!! Sorry. Maybe you had to be there, but it was just SO classic A. It was also very classic Rehab because all of my therapists have tried hard to say things with zero trace of judgement, e.g. if I ever stumbled or displayed sub-par motor or visual skills it was always encouragement, never horrified gaping that my body parts are as far gone as that.

These, days, though, I’ve graduated beyond the world of highly controlled responses to my (non)ability to remain on my feet. I have realized that Trainer D has a much higher tolerance level than any of my PTs for the length of time he’ll allow me to fight for my balance before stepping in. In fact, he hasn’t actually had to catch me yet. Whereas my Therapists have always been hyper vigilant regarding any deviation from the prescribed movement and will intervene at the slightest unruly motion Trainer D, while attentive to my gait pattern, will allow me to struggle (while carrying something heavy) take a couple of missteps, and cheer me on as I regain my footing. I’m okay with this since I’m sure Trainer D’s cat-like reflexes probably give him a higher time threshold knowing that he’ll make short work of helping me out of a tight spot. If I did not have this confidence we’d have words about it, but as it is the situation is funny.

I enjoy the contrast between A’s emotionless, “Okay…no…” and matter of fact way of propping me up and Trainer D’s vocal but hands-off support. Both approaches are appropriate for their context. When I was A’s patient I was barely aware of my surroundings and in control of myself enough to look people in the eye (S|OT6 made me) and it was safest to act like my deficits were run-of-the-mill. I wasn’t ready to understand the depth my injury or its long-term ramifications. Now I’m well enough to have built up some emotional robustness and can afford to look my deficits in the face.

The stakes are even higher now – as time progresses I get further away from the likelihood of [fill in the blank] – but I’m strangely more relaxed. While I was at The Place I’d ask doctors questions like, “…at what point do you become concerned…” – it was very timeline driven. But now I kind of don’t care any more. Although I know the biggest gains come in year one I’ve also heard that recovery doesn’t stop until you stop. So I’m continuing to pursue Recovery more aggressively on the assumption that I’ll get well to the extent that God has planned for me. Sure, I have an opinion on what I hope the nature of that recovery will be like, and I do what I can to exercise and do rehab at home – but knowing that the ultimate control isn’t mine takes the pressure off and I am free to enjoy this process. I have progressed from the safety of emotionlessness to being able to lose control momentarily, regroup, and laugh, too.

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

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

318. Confident

11938949186_97ba6f37a7

One of the first things I learned in Physical Therapy is that you never assume your wheelchair is behind you. You feel it on the back of your legs and then you sit. This is one of the habits that has stuck with me, except I’ve added visual confirmation to the pre-sitting routine. At first I was like, Seriously, Mommy is following me around with my wheelchair. I’m PRETTY SURE it’s going to be there when I sit down.

mommywc

Except I kept that commentary internal.

Until now.

But it’s a good practice to verify the position of anything on wheels before you sit on it or use it in any other way for stability. The time has come, though, for me to build confidence in things that don’t move.

Last week Trainer D introduced me to his friend the kettlebell. (Me: Have I mentioned that I’m disabled? MMiyagi: No.) I was deadlifting it (there was unintentional swinging but nothing untoward happened, PS lifting kettlebells etc. is aimed at functional activity – he likes to explain the mechanics of movement and how doing a certain exercise exemplifies how I should lift things in real life) and at the end of the set I was supposed to sit down. “Don’t look!” Trainer D told me. The first couple of times I couldn’t help it. I looked to make sure the bench was still there. The third time I resisted the urge for visual confirmation and just sat.

You have to trust it’s still there, he explained. It’s an inanimate object. It didn’t get up and walk a few inches to the side. It’s also important to remember I sat down (almost) a few moments before while holding a kettlebell – I could do it again unweighted without incident.

Fair points, I thought. I was also instructed to have more confidence in my left leg at Therapy last week. I did some side-stepping over some cones in the parallel bars (picture above) and I’ve never had such a good view of how my legs (especially on the left) don’t want to do what I’m telling them to do. Normally people just make a strong fluid motion and plant their foot where they want to without thinking about it. But I saw my left leg wandering hither and yon before I managed to get it on the side of the cone.

This is the same reason why I have to wear shoes when I climb stairs. I can’t put my feet where I want to so I feel the step in front of me with my toe or the back of my heel. Unless I’m wearing proper footwear it hurts. I was frustrated during the parallel bar-cone exercise, but my PT told me my leg looked pretty good. The main things for me to concentrate on are weight-bearing on the left and building confidence in general.

It was M (37) who first called me out on the leaning to the right-thing and explained how my brain mistrusts my left side so it favors the right. It’s gotten a better since I was at Planet Rehab with her but recent polls indicate that I’m still leaning a little.

I’m thankful to have progressed to the point where we can get pickier about form and aim higher in terms of my gait. For a long time no one told me I was leaning to the right. Mommy explained she was just glad I was walking. But now we’ve got our sights set on the higher end of my self-devised walking scale.

117.  AVM Metrics

117. AVM Metrics

In addition to attention to the finer points of the 10 tips this is going to take some confidence. I used to have a LOT of confidence since I didn’t know any better – I didn’t believe anything had happened to me so of course I could do XYZ. Now I do know better but I often forget that my body is different now, or a new deficit will surface that I haven’t accounted for, and I’ll try XYZ when I should really be more cautious. That’s why I need professionals to decide on appropriate activities for me and to ensure their safe execution.

220.  I've Got this

220. I’ve Got this

What I’m talking about now, though, is not misbegotten confidence like I’ve had in the past. This is about using my head and remembering that, like the bench at The Gym, some stuff doesn’t change. But even when the pathway is uncertain and there are changes ahead you’d never expect I love the language of the Psalms about “hinds feet.” It’s not the path but the feet and even the steps of the Psalmist that get Divine attention. PS. In case the language of this psalm is a little too martial for your taste look at verse 35, “Your gentleness makes me great.” How’s that for counter-intuitive? At least it’s counter-intuitive for me. I’d expect something about God’s omnipotence here, not a reference to His gentleness. But that’s what makes Him so approachable – I can approach the throne of grace with confidence since I’m sure of a favorable reception there…and I’ll thank Him that I can walk. Now I’ll ask Him to please help me walk better.

Psalm 18.33-36

33 He makes my feet like hinds’ feet,
And sets me upon my high places.
34 He trains my hands for battle,
So that my arms can bend a bow of bronze.
35 You have also given me the shield of Your salvation,
And Your right hand upholds me;
And Your gentleness makes me great.
36 You enlarge my steps under me,
And my feet have not slipped.

317. Quizzical

The Diagram in CMD's office

The Diagram in CMD’s office

For the first time in almost three years I’m being asked to process information and reproduce it verbally upon request. Well, actually, no – I had to do this sort of thing for my neuro-psychs during cognitive evaluations. (Heh, heh. Try again, buddy. Heh heh. Try again.) But the context I’m thinking of now is a non-rehabilitation environment. When I go see Trainer D it’s like a quiz show. In the future I have hopes of filming a new reality series on my phone – we just need to recruit his trainer friends to be cast members.

But for now I’m the only contestant on the quiz show we like to call Personal Training. Trainer D will talk, use some big words for different muscles, point to parts of the weight machine, and then ask, “So what are you supposed to concentrate on?” If I’m having a good moment I’ll offer something like, “Ummmm…don’t arch my back?” More often I’ll cast my eyes blankly about the room and say something like, “Umm….don’t fall down?”

Happily, Mr. Miyagi is knowledgeable but not picky. He will accept whatever answer I give him graciously, and then he stands nearby to make sure my arm doesn’t snap off etc. Or at least he has promised to catch it on the way down. A few weeks ago he was doing the usual, can you feel XYZ muscle firing? and I told him, “You’re asking for a whole lot of self-awareness…” (I didn’t fall down, did I? What more do you want from me?!?! 🙂 ) Self-awareness is not my forte presently. Oftentimes I can’t sense things properly and my vision and hearing can play confusing tricks on me. When I do sense things I’m not always able to judge whether or not an activity is an appropriate challenge –e.g. tall kneeling – I think it’s supposed to hurt that much. So I often need my peeps to be able to intuit that I’m in distress or I just need a rest, since it’s not likely that I’ll be able to offer such feedback on my own.

127.  How to Enjoy the Rehabilitation Process

127. How to Enjoy the Rehabilitation Process

In return, they like to know that I’ve absorbed the information they are sharing with me – e.g. quiz time at The Gym. CMD also likes quiz time. Leading up to my summer vacay she’d ask me to demonstrate the acupressure facial self-massage techniques she showed me so I could do them while I was away. I got it wrong three weeks in a row. I’d be rubbing my face, touching what I thought were appropriate points, and a couple minutes in she’d be like…Okay…you can stop now. And then I’d go study the diagram in her office some more.

These days no one’s going to argue with me if I say, “My head hurts and I’m going to go lie down.” Indeed, I often omit the “head hurting” part because it only twinges a bit, and I do not want to alarm Tanpo since I know the danger is past but it is still fresh in his mind. One of the blessings of being cognitively intact, though, is the ability to be stretched mentally. Sure, it’s funny when my brain is floppy and I can’t remember anything other than “don’t fall down” and I forget how to do the right facial massage on my crooked smirk (PS. It’s getting better!) It can be a little frustrating, too, when I can’t process all the information I want to, but it also forces me to boil down everything getting tossed into my pot of Recovery Soup so it’s reduced to the most salient points: e.g. don’t fall down, use your core, and breathe.

149.  Why I Choose Therapy

149. Why I Choose Therapy

This is why I surround myself with experts in RecoveryLand – they have special knowledge that I need. It took me a while to figure that out, but I’m fully bought in. I have been blessed to work with several highly proficient and truly caring practitioners since I got sick. My method has been simple: once I understood the importance of what was happening and the value of a skilled professional, I started asking God to lead me to the right people. (Before I thought of asking He just gave me people I needed even though I didnt know I needed them.) This method actually works in every context, though. It’s always a good idea to build a network of individuals who are smarter than you are, especially in areas you wouldn’t call your “strengths.” You never know when you’ll be calling on their expertise.

56.  Expertise

56. Expertise – What are you good at?

250. Learning How to Walk

Learning How to Walk Again | Platform Walker | Post AVM Rupture Inpatient |Ann Ning Learning How

In a few days I get to celebrate 2 years of walking.  Note that I said “walking,” not necessarily “walking WELL.”  That will come later, Lord-willing, and at this point I’ll take what I can get. 

I wrote to A(6) a while ago to ask him if he’d be okay with being a regular “character” in my writing.  (I tried asking as many peeps as I could, but have opted for no pictures and initials since I couldn’t get to everyone.  Plus I’m kind of weird like that.)  As I told M (37) when I asked her, my intention is to portray Therapy as a positive thing because that’s what it’s been for me.  Actually, I don’t think I told her that.  I think I just said that my intention was for her to have a growing fan base.  I meant the same for A.  Both of them were totally cool about it.  I did tell A that the title of my “Memoirs” is Learning How…to Walk so he’s kind of…important.  But I said we’d worry about the blog first and then cross the Memoirs bridge when we came to it. 

Learning how to walk has been a very popular search topic for me lately.  Apparently there are lots of people learning how to walk as adults due to all kinds of illnesses and injury.  So as I contemplate this 2nd anniversary I wanted to share the “Walking” chapter (ch. 12) from my “Memoirs.”  I reread it for the first time in a while last night and realized that I had forgotten some of the hair-raising anxiety I felt when I was trying desperately to walk, but couldn’t.  I was also struck by my statement, “Every step is a choice.”  I would still often rather just lie down and cry, but lying down and crying haven’t gotten me anywhere in the last two years so I have to keep on walking.  I have the opportunity to be mobile, so this train’s not a-stoppin’ Choo choo.

PS.  To my friends in various stages of walking attainment or separation, I’m rooting for you. 

12.  Learning How To Walk

Before I could learn how to walk I had to learn how to sit and then how to stand.  PT1 and PT18 used to make me sit on the side of the bed at the 2nd Hospital.  At that time I still didn’t know what was going on.  I just remember their faces and being convinced that the bed was really spinning like a merry-go-round with my feet dangling through a hole in the middle.  The force was so strong that I was sure I would be thrown off any second so when my allotted time was up one of them would hold me by the arm and let me down gently until I was lying on the bed.  It was the only safe place, as far as I was concerned, and it still is, since if I’m already lying down I can’t fall.  Later in my stay, PT14 and PT15 would come and put me in a chair.

73.  Stronger

73. Stronger

When I got to the 3rd Hospital, I had never sat in a chair for more than an hour before, and I had certainly never sat in a chair without a headrest.  Now I did both since the wheelchair I used on my arrival was the only option until PT2 built out an old dinosaur for me.  During some of my first physical therapy sessions PT2 had me propped up in a standing frame I called “The Vice.”  He’d be busy taking my blood pressure to make sure I could tolerate standing, and I’d be there thinking, “Yep, he’s crazy,” because I thought I could still walk at that point.  It turns out that he wasn’t crazy – he was just careful.  After he was convinced that my body could withstand The Vice, PT2 wrote the order for me to stand in it every night.  So after dinner my nurses faithfully wheeled the frame in and strung me up in it.  It was painful at the time, but I could stand for abnormally long periods afterwards.

When I first learned to use a walker I got plenty of lectures on how to do it right, consisting mainly of phrases like, “Use the walker only for balance,” and “Keep the walker on the floor.”  My instinct was to pick the walker up and position it in the way I wanted when we came to a corner, but that isn’t how you’re supposed to do it.  My walker would be screeching along because I was leaning on it so much, which is why my therapists encouraged me to stand tall like a tree and resist hunching over it.  Apparently their advice took root because by the time I got to The Place, PT8 told me it was good that I hadn’t developed the habit of leaning over too much.

At the 3rd hospital I met PT3, whose nickname (another therapist informed me) was “The Miracle Worker.”  The fact that she had such a nice manner about her, combined with my obvious need for a miracle, convinced me that I should stick close to her.  I was Learning How to Walk Again | Post AVM Rupture Inpatient | Ann Ning Learning Howwalking with her when I first got close enough to a mirror to see my face.  I was holding one of the railings of a set of bars, and she had rolled a large mirror over to one end so I could see my body’s position.  “PT3, what is going on with my skin?!” I exclaimed when we reached the mirror.  I had other fish to fry at the moment, but all I could think of was that my skincare regimen had been disrupted for way too long.  I have always had problem skin but this was…epic.  PT3 laughed, which made me laugh, and I decided that I had better concentrate on learning how to walk instead of my complexion.

I felt safe in the parallel bars, and spent a lot of time in them at The Place.  I liked the fact that I could grab on to them if I felt myself falling.  Depending on another person was a different matter.  The first time PT6 told me to leave my walker behind and walk holding his hands instead, I asked, “Are you sure?”  Then again,  “Quite sure?”  He answered in the affirmative with great finality both times, so there was nothing for me to do but get up and walk.  I allowed myself the liberty of clinging to his forearms instead of holding his hands, though.  When a similar scene occurred with PT8, he responded, “I’m sure, are you sure?”  So I paused to consider and told him that I wanted to walk really badly, so yes, I was sure.

I knew it was only a matter of time until PT6 suggested walking without holding on to anything at all, and I was scared stiff.  One morning Mom caught me crying in my bed and her maternal intuition told her that it was because I was afraid to walk.  After some quality time with the Scripture and sermons on my iPod I felt calmer and told her, “I know what the right thing to do is.”  For me, that meant putting one foot in front of the other even though I was scared.  I was so stressed out as the anticipation built that my blood pressure would rise ten or twenty points from when OT6 took it at the beginning of our session, to when PT6 took it at the start of physical therapy.  To this day, every step is a choice.  I would much rather lie down and cry, but I continue to walk.

The fateful day came just as I thought it would.  PT6 was very kind, though, and gave me advance notice that he thought we should practice walking outside the parallel bars during the following week.  “Do you have some sort of magic wand you got in therapy school that will make people learn to walk without actually walking?”  I asked.  PT6 said “No,” and told me there was no pill for that sort of thing either.  “This whole situation is so bizarre I figured I might as well ask,” I told him, and continued to dutifully push the giant shopping cart across the gym. Having eliminated any other possibility, I was thinking, “Fine…we’ll do this your way,” rather grudgingly as I pushed the cart.

Knowing that there was one method of learning how to walk, I prepared myself as best as I could.  I was determined not to cry all over PT6, since “There’s no crying in baseball!”  (That’s what Tom Hanks tells one of his players in A League of Their Own.) So I prepared myself accordingly.  Jewelry has always been a strong motivator for me so I purchased a sapphire and diamond band to wear after my first real walk.  I also practiced by walking in the bathroom – the only time I was really alone behind a closed door, although it took several months for me to be allowed to use a bathroom by myself.  Don’t worry, Mom. I was always near a wall I could lean against.

PT6 was stricken by a bad strain of the flu the following week, so while he was making sure he was getting plenty of fluids and rest at home, I took my first walk around the gym with PT16.   She held on to me and stationed chairs every few feet along my path, and when we reached the first one I told her that I had never been so happy to see a chair in my life.     Still, I was waiting for the time when I could walk without holding on to anything, and without anyone holding on to me.  “The only thing worse than walking,” I told Mom that week as we exited The Place, “is not walking.”

It happened in my kitchen.  True to form, I got impatient and decided that I was going to make this walk happen.  We have an island in the middle of our kitchen, and I intended to make my way around it without touching anything.  On my first round I stumbled and needed to clutch at a bar stool, but on the second round I tightened up my core and pressed down with my toes when I felt myself falling, and made it successfully around the room.  “That counts,” I told Mom, and then I sat down to write to Dr. Dogan and the people at RIO to tell them that their labors had paid off.

Besides the fact that I got to wear that ring, the other good thing about walking first at home was that the probability of me crying all over PT6 was much lower.  Since the worst was over I wasn’t scared anymore, and pretty soon PT6 brought out a quad cane (a cane with four feet that stands up on its own) for me to practice with.  The first time, he let me hold one of his hands and told me to just walk without even thinking about it, and I found that I was simply carrying the quad cane alongside of me.  While I was practicing at home with it, Mom advised me that I needed to actually put the quad cane on the floor and use it instead of letting it hover in the air while I took the next step.  As you can see, I found walking with a cane as unnatural as using a walker.

Sometimes when I walk now with my cane I pretend that I’m my friend, M, from the 3rd Hospital.  Half of her body was crushed in a car accident, and the fact that her husband dropped everything to accompany her on the long road to recovery is a strong testament to the kind of people they both are.  M’s loving parents were also there, and it made me feel better to see them if my own were absent.  When I first arrived M was sitting in a wheelchair like me, but a month later I saw her cruising around with her cane in spite of the pain.  I wished so hard that I could walk like her.   I still do.

135 x2. There’s no crying in baseball!

About a year ago Mommy came go get me one morning (I was still sleeping downstairs) and caught me crying in my bed.  Boo hoo hoo!!  😦 I had a full day of therapy ahead and I was dreading it.  This is why:

This is ~30s of one of my first attempts to walk post AVM + stroke.  The lack of self-awareness meant the absence of fear.  Basically, I thought E (1) was nice and I wanted to do anything she said.

The first time I saw my friend A after getting sick was on Labor Day 2011.  I asked Mom and Dad to take me to the GWH conference and I had prepared by clearing my intention to walk “the loop” at camp with my PT.  Although I got my PT’s green light, Mommy had other ideas.  There was also more traffic and bug activity on that very hot day, which I was not anticipating.  In the end, I jumped ship early, and Mom ended up pushing me a little on my rollator (Thanks, Mom!)

When I saw A I was sitting in The Chatterbox (the snack bar) with a lot of ice cream in front of me.  “Look  – there’s your friend!” my nephew pointed across the room and announced A’s arrival.  She parked herself on a bench next to mine and I immediately shared my most urgent prayer request:  “I don’t want to cry all over my PT,” I told her.

Babies have a lower center of gravity since they are small, and that helps them keep their balance.  That’s also why most gymnasts are of a diminutive stature.  At my height and with my brain condition, the possibility of falling and getting hurt when I was already quite impaired terrified me.  My stomach was in a permanent knot for a couple of months as I anticipated learning how to walk.

I did well to remember one of A and her sister’s favorite movie quotes:  “There’s no crying in baseball!”  That’s what Tom Hanks tells one of his players who’s having a little moment in A League of Their Own.  If you recall, this is the movie about the success of an all-women’s league during WWII – when many men were in the service, and women stepped up to the plate and preserved America’s favorite pastime.

The crushing anticipation almost did me in as I knew the time for me to walk was drawing closer.  I did my best to remember, though, that there’s no crying in baseball, and am happy to report that I never broke down during PT as I had anticipated.  I suppose I cried it all out beforehand.  And celebrating with my walking ring helped.

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