355. Breathe

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I’m going on Spring Break. I intended to go on a blog vacay in April to celebrate Ed’s 83rd Birthday (Light the tikki torches!! It’s the 3rd anniversary of my injury), but push has come to shove and I’m taking a break before schedule. I’ll be back online in mid May, but we’ll see if I can hold out that long – I might come back sooner.

I love it when people break down instructions so I can isolate what I really need to concentrate on. For example:

  • When I was new to rehab: The goal is for you to tell me BEFORE you pass out. (Side note: Thanks, buddy, so glad we clarified that. PS. I just LOVE being here.)
  • Early gait-training in the parallel bars: Your job is to go straight down the line, one foot in front of the other.
  • Running in a harness for the first time: Concentrate only on the heel strike.
  • Getting the weird tissue in my shoulder broken down: Just breathe.

    343.  Strength & Honor

    343. Strength & Honor

There are many issues competing for my attention lately and while I have been an excellent multi-tasker in my Old Life I am unable to do so now. It took over a year for me to be “allowed” to talk to my therapist while walking bc this is considered “multi-tasking” that you’re supposed to work up to. Or at least I was supposed to work up to it bc I was deemed to be such a new walker I needed to resist the instinct to chat and focus on not falling.

But now I understand the wisdom in paring down goals. I’m losing steam over here so I’d better streamline this gig so I can basically just breathe. Okay, it’s going to be more complicated than that, but that’s all the more reason for me to weed out things that can wait. I love writing, and have at least 2 additional weeks of posts in my head, but getting them on to my computer is hard, and I should really attend to some other things.

So I’m signing off for now – please pray that I’ll do what I need to do and will enjoy Ed’s Birthday. I’m going to leave you with my favorite “breathing” post:

315. You Take What You Need

I never told you the story behind this picture:

308.  No Sign of Weakness

308. No Sign of Weakness

We visited E&R a few weeks ago and got hit by a snowstorm. It took us 2 hours to get home from church. It took S four hours. After the meeting was over I looked out the window and wanted to cry because what had been a few flakes had turned into significant accumulation. But then snow started to fly signifying that Uncle M was already outside shoveling the sidewalk and spreading salt. When it was time to get in the car he appeared at my other elbow. When we got home after a LONG ride the police had already shut down the road outside E&R’s house but let us through when Ernie pointed to his house and promised that we really weren’t passing through. Then we got stuck on the driveway. I borrowed Ruthie’s Wellingtons and then Ernie and Tanpo helped me on either side so I didn’t fall.

PS I had totally forgotten Leo at home that weekend. Good one, Ann|Ning. I don’t forget Leo anymore because I’m supposed to be practicing having good form, and for now I need Leo for that. We all know I can get from point A to point B without falling (most of the time), but this is no longer laudable. I’m supposed to be concentrating on the 10 tips, specifically the hip rotation and the narrower stance.

152.  10 Tips for Learning How to Walk

152. 10 Tips for Learning How to Walk

The point is that this was the first time I walked in significant ice and snow, and I was scared. But I had some help from my friends, and I made it!

This goes back to my assumption that there will be enough grace in that particular moment for everything I need.” A few weeks ago I wrote about how I’m going back to my hospitals in Oregon to say “hi” and “thank you” even though it freaks me out because it’s the right thing to do, but I am just saying that I’ll need a Divine infusion of grace when it happens because just the thought of it makes me feel ill presently. But I got encouraging notes from many of you (thank you!) and I’m still moving forward (mentally) with this plan.

It’s time for me to share two more examples from The Hiding Place by Corrie Ten Boom. She’s the Dutch lady whose family got caught hiding Jews in their home (and/or were involved in the Resistance) during WWII and then several family members were sent to concentration camps. As a child, Corrie saw the dead body of a baby during a visit of condolence and was so disturbed she cried all night. Corrie, her father (who would later die in a Nazi camp) told her, When we ride the train, when do I give you the ticket?

Right before, Corrie answered.

That’s right, her father continued. And this was like many things in life, he explained. Oftentimes the knowledge of these things is too heavy for us to carry in advance. But we trust that our Heavenly Father will give us what we need when we need it.

Corrie illustrates this with great power later in the book when she describes meeting one of her former captors at a speaking engagement in post-war Germany. I wasn’t able to find this in the book with my inadequate Kindle search skills, but thankfully it was readily available at PBS.org here.

She was speaking about the power of God’s forgiveness and a man made his way to the front. He was in civilian clothes but she immediately recognized him from Ravensbruck and the old shame, anger, and bitterness welled up inside her. He had since become a Christian, however, and wished to ask her to forgive him since she had mentioned Ravensbruck in her talk and he took the opportunity to ask “Fraulein” (he didn’t recognize her) if she would forgive him for his past actions.

She couldn’t do it. Even though she was busy preaching about God’s transformative power she was too taken with the memory of suffering, particularly her dear sister Betsie’s suffering and death, to see straight. But she prayed for God’s help and said, Lord, I can lift my hand – I can do that much. You must supply the feeling.

So she lifted her hand to shake the former guard’s, and when she did she felt what was like an electric shock run down her arm and the current transfer into his. God had indeed supplied the grace she needed at that moment to be living proof that the Cross really does transform. “I forgive you, brother,” she said, “With my whole heart!”

This illustration of living grace has stuck with me for years. I feel “lighter” just thinking of it – talk about discarding baggage. When human forgiveness is impossible, nothing is impossible with God – and His forgiveness brings sweet freedom.

I learned in Speech Therapy about breathing techniques. Most people don’t have to think about breathing and speaking simultaneously, but people like me often get tripped up between the two and end up using “residual air” to keep on talking even though they’ve run out of gas. K exaggerated the breathing process for me so I could see her appropriate intake and usage of oxygen to say what she wanted to. “See?” she illustrated. “You take what you need.”

That’s my plan. Every day I’m trying to take what I need. Like air when I’m speaking, it’s not like I’m ever in a situation where oxygen is in short supply – I just need to practice accessing it appropriately. I’m also working on the assumption that God’s grace is unlimited so there will be no shortage when I access those resources. I just need to practice having faith that I will receive what I need when I need it.

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354. How and Why to use an AlterG Anti-Gravity Treadmill

Using an AlterG | Ann Ning Learning How

I’ll refer to an AG Treadmill simply as an “AlterG” bc in my mind it’s like how “Band-Aid” is considered synonymous for an adhesive bandage. The only other kind of AGT I’ve used is a ZeroG (the giant Baby Bjorn) at Planet Rehab. I don’t know of any other ZeroG’s anywhere else so for convenience I’ll talk about the AlterG. I’m not affiliated with this company – I’m just providing information I wish I’d known before I started.

I have spent 2.5 years perfecting my outpatient persona – e.g. to accept the Therapist assigned to me, learn whatever I can, and make his/her day go by fast. I’ve tried not to be picky. It’s been easy bc I have consistently been given real winners. I made a genuine effort not to harbor unreasonable expectations (esp. after M37) but one of the marks of God’s care for me throughout this process is that everyone keeps on being a highly proficient practitioner. So now as I near the end of my outpatient career I’ve gotten choosier.

I’ll get back to the AlterG in a minute – this is related, I promise. As I transitioned to Medicare via Kaiser I chatted with a Rehab Receptionist to set up my eval and told her I needed someone with an appropriate skill set. When I went to The Gym I indicated that my work ethic would be strong but I needed my trainer to know what (s)he’s doing. When I started talking about core strength during that initial “interview” Trainer D’s eyes almost fell out of his head in a retrospectively hilarious moment of resonance.

33.  *Are you using your core?!?!?*

33. *Are you using your core?!?!?*

This is a central tenet of long-term Recovery: signal to the market. Let people know you’re in this to win it by having the forethought to indicate what you want, what you can do, and what you need. Making your intentions clear increases the likelihood of getting your goals met and (if an issue) gives the organization a chance to assess the risk-level they are taking on when you come in.

84.  I Come in Peace

84. I Come in Peace

I did this with Coach R. It paid off bc while I was expecting a simple transaction (time rental on the AlterG) I ended up signing an important ally for ORFR. I told him I was going to get picky simply because at this stage in the game I can and if I was going to get treatment it was going to be from him. When advising me on what to do, I think Coach R used the phrase, If you want to do this right… We’ll work on balance, strength, and spatial awareness so I won’t always have to depend on an AlterG. But while we’re working on it I am SO thankful to have the opportunity to use the equipment available to me. This is why and how you can, too:

Why to use an AlterG

  • Choose the body weight % you want to load (20%-100%)
  • Great for rehabilitation of injured athletes, or those who wish to keep training (e.g. pregnant marathoners) without high-impact workouts
  • Eliminates falling risk (!!)
  • 59.  I'm not doing that.

    59. I’m not doing that.

    There are harnesses you can put over a treadmill making it impossible to fall out, but most do not have anti-gravity/unweighting capabilities. Even if it does M37 explained that a harness allows the practitioner to move your legs for you if you need it, but the AlterG requires a higher level of mobility bc your legs are sealed in the bubble – training is eyes-only. People usually peer through the large “windows” around the bubble and offer feedback. Some machines come with cameras and a screen in front so you can watch your feet. I used to watch mine all the time at The Southern Gym (the PT practice where I used the AlterG last summer) bc my left leg strays beyond the confines of the belt when tired. I must rein it in intentionally.

How to use an AlterG

  • Find one: Go to AlterG.com. On the top right and side-bar there are zip code fields that yield a list of local AlterG’s. (I think this is a U.S.-based service presently – sorry, international friends!)
  • Weed through the list: Many of the places will be clinics requiring you to be a patient with an Rx – the machine is not for public usage. Some boutique gyms or running stores have an AlterG. Sports teams might have one, too, but this is not helpful for most. I prefer PT practices that rent time on the AlterG. If you can’t tell from their website, give them a call: 1. Confirm that they have an AlterG on site. 2. If yes, do they rent AlterG time to the public?
  • Make your initial appointment and think of the package you’re interested in – e.g. # of minutes per week. Some places give you an initial training on how to use the machine (this could be an extra fee). Others have their own people always on hand to help you in.
  • Be prepared to wear funny shorts. Some places ask you to purchase your own if you’re going to be a regular user (around $75) and others keep an assortment of sizes on hand for your use. They are like neoprene bike shorts with a narrow rubber tutu around the waist that you slip over whatever you’re wearing. The tutu has a zipper around the edge. When you step into the deflated AlterG you’ll step into the circular hole in the middle. They’ll pull the frame up to your waist (Coach R prefers it to sit slightly lower to allow for greater freedom of movement in the arms). It locks into place and then you/they connect the zipper on your shorts to the one on the AlterG. Now you’re zipped in to the bubble.
  • Turn the machine on, or your practitioner will do it and advise you on arm placement to promote an accurate weigh-bearing calculation by the device as the bubble inflates. Choose your % load, speed, and enjoy your walk/run!

PS. The title picture is me at The Southern Gym with my niece Hannah. Ai Ai was reluctant to let me walk the 50 feet inside the building to the Southern Gym but occasionally allowed H to accompany me – but she had to hold my hand. I haven’t held Hannah’s hand since she was 3-4 and we’d zip around town and have fun in general. I had no idea my sister took this picture. I was too busy looking at my feet on screen.

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

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I’m getting kicked out of Therapy. It’s Trainer D’s fault. I did clarify that “I BLAME YOU” = Thank you,” but this is too important for me to say in any other way than code except this once. That moment has passed and I’m back to feeling happier when I hold him personally responsible for this.

I’ve not been discharged yet. I’m downgraded to 1x/week, and then 2x/month after March, with discharge as the end goal. In Q4 ’13 I told my PT I’d need as much notice as possible pre-separation. At that point her answer was You stay here as long as I say so. And I say so. I’ve avoided writing about PT in order to protect the identities of the innocent – but let me assure you that there is a LOT of laughing and the whole crew produces oodles of entertainment.

Trainer D is also highly entertaining and I have no hesitation when writing about it since he generously gave me free reign here. The reason I know this is his fault is because I actually felt a difference after ~3 months of training. No other variable has changed in my Recovery. This is an example of sensitivity analysis. If you build a model and are considering the impact of a cheaper supplier or a more expensive marketing firm you change one variable at a time. The extent to which your bottom line shifts is traceable to that specific variable.

87.  No Modeling in Public

87. No Modeling in Public

I walked into Rehab one day and my PT called from across the room, You look really good.

So I put Leo the cane down and asked her to watch me for real. K (the Speech Therapist) passed by and saw a difference, too.

Notably, the gait deteriorates with fatigue. I saw M37 that weekend right after church so my walking wasn’t looking that great. Overall, my score on the walking scale is still only a 5-6. I asked R (I’ll introduce you formally tomorrow) last week. It looks like I’ve had a hip replacement or something (per my request this was accompanied by a hysterically apt imitation) but it would be hard to notice if just passing me in public. I’ll take a 5-6. That’s better than the (low) 2-3 C gave me when she did my Planet Rehab eval.

117.  AVM Metrics

117. AVM Metrics

My PT also treated Mommy last year. Helping Baker Smurf is enough to secure my loyalty, but our PT has exceeded my personal expectations. She told Mommy upon discharge, …we’re going to take care of your daughter. Accordingly, she has interrogated me regarding my regimen. When I told her I ran she said, WHO WATCHED YOU? (Subtext: I need names.) So she’s added more accountability to RecoveryLand, where parental vigilance already demands that the people I work with be top notch. (Side note: I originally took the title picture of Ed for a post on transitioning from Physical Therapy to Personal Training. I now understand that Trainer D is not representative of the general Training population, so that post would likely not be helpful. I blame him for this, too.)

CMD also provides accountability, noting changes in the way my body is acting and charging me to make sure other people are watching too. When I met him at the Running Gym R asked me how I like acupuncture. Love it, I answered. She keeps me on a real short leash.

I tried to explain why this is a big deal to Trainer D but he has exhibited zero remorse. ARGH. “Absolutely terrifying” = unambiguous language!! Rehabilitation is the only thing I’ve known since I woke up. There. I said it.

So now I’m facing the prospect of being truly cut loose. I anticipated this, which is why I joined the Gym in the first place. But I didn’t realize it would actually hasten it. Oy. That plan backfired, didn’t it?

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

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

So the way I’ve decided to console myself is to learn how to run, I told Trainer D. And you’re going to help me.

We’re picking up where M37 left off when I had to leave Planet Rehab (sniff) and pursuing Operation Run Forrest Run (ORFR) aggressively. I asked him to think about what he’d be comfortable with (there are no harnesses hanging from the ceiling at The Gym, a non-(neurological) rehab environment)– how I have no interest in creating a liability sort of situation, etc. But his indication of complete comfort with any and all running scenarios was so instantaneously enthusiastic I was like,

Erm…I guess this is the part where I trust you. But we’re going to have to work up to that.

I don’t know if M37 is familiar with the concept of “working up” to something. The second day I saw her she told me we were running, and after she saw me run (it was more like fast shuffling) once in a harness she dispensed with it entirely on land and just stood behind me, holding my belt, when on the treadmill. (Then I favored the Zero G so I wouldn’t elbow her in the stomach.) Confidence begets confidence. She didn’t hesitate so neither did I.

I guess I’m more nervous in a non-rehab environment. That’s why I found the Running Gym and recruited R to help. There are no harnesses there, either, but it’s a sports-rehab sort of place and I can tell R knows what he’s about. So I’m working on running with him every week but I’ll also work on the same type of movements in a “real life” environment at The Gym with Trainer D. So far he’s easing me into treadmill usage in a non-scary way, which is good. This is still in the very early stages so I’m not sure how this is going to pan out, but I’m sure I’ve enlisted the right kind of assistance.

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347. Trust

Kpop demonstrating how to give a reassuring hug

Kpop demonstrating how to give a reassuring hug

When M(37) first pointed out my gait’s lack of hip rotation we had a trust-building moment before she started actively intervening. This was presumably so I’d know she wouldn’t let me fall even though she was “pushing me around” while I was in motion. I tried to convince her my rigidity was actually good. “M,” I said in a straining-muscle voice, “It’s bc I’m using my core.”

She didn’t buy it. So she wheeled up on a stool behind me while we stood in front of a mirror at the hemi bars.

Sit on my knee, she instructed.

Ummmm…… I didn’t want to crush her. She commanded me to sit again then said, The point of this exercise is for you to trust me.

I hopped off my perch quick as a wink – mobility issues, what?

I trust you, I trust you!! I assured her.

Heh heh. That’s what Therapy is like. My whole life is like that now, really. It takes an enormous emotional capital infusion for me to trust anyone else. Frankly, I prefer the parallel bars. But the bars are generally screwed to the floor while you have greater freedom of movement when working outside them. Plus I’m just getting to the point where parallel bars are becoming a fixture of an earlier stage of recovery.

There was a time when even using bars or a walker was too much for me to manage – full body support was the MO in the very early/acute stage of recovery. I had less of a problem then bc I wasn’t aware enough to think of the possibility of falling – I just did as I was told – I didn’t really care. When I learned to walk I understood more and I was absolutely terrified. Hence the ring. But after a few months’ experience I knew A (6) could be trusted.

110. If my foot slips...

110. If my foot slips…

I asked what the consequences were if I did fall. There’s a lot of paperwork, he said in classic A style. Another therapist was more direct. I didn’t even ask. The statement at the beginning of the session was, I get in trouble if you fall. Don’t do it. 🙂

The trust-expectation timeline has accelerated as I’m almost at the 3-year mark but I wish to still progress physically. It has become apparent that if I want to do XYZ I will require assistance and I’m signing up to trust people to help me.

You have to trust me! Trainer D said to me in a mock scolding voice on my first day when he was testing my limbs’ range of motion etc. and I automatically put up a fight when he was trying to move my leg around. This is a standard strength-testing procedure whenever I’m evaluated by a PT or a doctor – you stick an arm or a leg out – they push it and you’re supposed to resist moving with everything you’ve got.

Oh, okay…I thought…I didn’t realize what was happening. My bad. We have now progressed to exercises that require me to be confident enough that I will be able to support my own weight/keep my balance and also to trust that Trainer D will help me out if I can’t. (I was right when I hypothesized that although he has a higher threshold for intervention he will in fact step in when occasion requires.) I’ve started doing the same thing I used to do to A(6) when I’d to look into any reflective surface to verify his location.

321.  Emotionless | This is the most relaxed I've ever been.

321. Emotionless | This is the most relaxed I’ve ever been.

Within ten minutes of going to my new gym – a private PT practice I’ll refer to as the Running Gym – my trusting skills were put to the test as R put a bunch of very low “hurdles” on the ground and I was supposed to step over them. I’m a little nervous, I confided, having cast my eyes about the room without seeing any sign of a gait belt.

I’m that concerned I’ve started carrying one in my purse lately and I wanted to use it, but something told me I’d better just hop to it. So I gingerly took hold of the offered hand (my, what a long way we’ve come since I began my Outpatient career and refused to hold A(6)’s hand!) and plowed ahead. I fell out halfway through the course and R didn’t make me finish. This week, however, he brought the hurdles out again and informed me I was going to go back and forth five times. You remember how this went down last time, right? I was indicating I was still nervous. But I did better this time. All 5 times, in fact. I used my core. And when he told me to step slower with greater control, I used it more. :). See? I told you the core thing works.

It always comes back to the core, doesn’t it? As Ed’s 83rd Birthday approaches (April 7, the 3rd anniversary of my injury) this is where the rubber meets the road. I was stressed when my 1st anniversary passed, but back then I was disturbed mostly by the knowledge that this truly happened. Now I’m grappling with the long-term implications of This Disabled Life. The jumpiness has worsened lately, and it’s been building for the past 7 months since I got home from Tim & Ai Ai’s house. I’ve even caught myself wriggling around in my chair if startled like when I used to rock vigorously before I could walk. To some extent my tendency to panic goes hand in hand with the type and scope of my injury. I went to work one day and I never came home. That is the “gentle” summary of what happened. Family, friends, and highly trained professionals have all assured me that I’m safe, but I’m always skeptical. It’s like how I didn’t believe them when they told me my brain bled. I was like, I’m gonna need to see the documentation on that.

Thinking of going to Oregon is exacerbating it. Mommy put me on notice that she’s sending me to Boo Boo’s before this gets any worse. Meanwhile I’m going to solidify my core stance and remember that I’m safe. I’d also appreciate your prayers – I’m going to need back up on this one.

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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.

325. Make Them Carry You

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Soon after I came home and started my outpatient life at The Place I was at church one Sunday and Mrs. M told me to have a good week. Regarding Physical Therapy she laughingly said, Make them carry you!!

I was reflecting on this advice later and told some friends, “The thing is, A (6) isn’t really the carrying type.

None of my PTs have been the carrying type. The more I can use my legs the better, in their book. M (37) told me my new wheelchair had better be only for travel or else. Mmm hmm. Yeah, she looks all nice and sweet and stuff. ❤

211.  Let's Elope!

211. Let’s Elope!

The only time I got carried around was when I was seriously bedridden. There’s a team of people they keep at the hospital who move people who can’t move themselves. They called the 6 guys on my behalf one day and when they got to my room and saw me lying there they just stood around my bed and laughed. When I was transitioning out of the bedridden phase I got carried bc I was obviously unable to support my own weight but

197.  Caught Red Handed RV Brownies

197. Caught Red Handed RV Brownies

still needed to participate in PT. There was also that time I face-planted at RIO. Other than that, though, there has been zero carrying around. I used to get full-body support when learning to walk as an inpatient (“Sometimes the walker is just another piece of equipment to manage,” K (3) told me), but it was just support. E, my first PT (that I remember) told my parents, “It’s not like I’m dragging her down the hall.”

See? This is us. (30 seconds of one of my first walks.)

I wasn’t scared about the carrying because it was so early in my recovery I’ve blocked most of it out and what I do remember I didn’t care about bc I was so loopy. By the time we got home, though, I was beginning to snap out of it and one of the hardest things about not being able to walk was being carried into church.

Our church building is beautiful but hails from 1964 and is not going to win any awards for accessibility. There’s a flight of steps up to the foyer and the auditorium, and my friends would gather around and lift my chair and me up to the main level. I was just beginning to understand what it means to live in a wheelchair and to get annoyed at always getting stuck in the bathroom at home bc I didn’t angle my chair just right, etc. But this was not annoyance – it was all out fear.

I used to take a medical self-inventory every Sunday morning, hoping I was feeling ill enough to stay home. But I was feeling (relatively) great – so I always went. In retrospect, I went to church bc it was the “normal” thing to do and I just assumed I’d be there every week once I made it home. I’m really glad I did that since we didn’t have to make a big deal out of it later.

My iPod helped – I’d listen all the way to church and when we’d pull in I’d be absolutely screaming on the inside because I didn’t want to have to be carried in. I only brought the chair to church for a short time – as soon as I could use a walker I did so – but it was one of the hardest things I’ve ever done.

Now I am 110% sure that any of my friends would have gotten hurt himself before allowing me to come to harm, but I was not thinking of this at the time. I was just focused on the air space and the bobbing motion as my chair was suspended above the stairs. But as difficult as it was for me, I’m pretty sure it wasn’t a picnic for them, any more than it was for me. These are my friends, and they didn’t want me to be in that chair. They weren’t professional wheelchair handlers, but there they were – esp CEF and S(&E) – waiting for me every Sunday to help me get upstairs. Thank you for becoming the “carrying type” for me, everyone! I’ll never forget it.

324. You’re Okay

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Ezra Sept 2011. This was the first time I went to a restaurant in my wheelchair. Mommy stayed home to entertain Ezra. He played in the car.

I never cried when I lived in the hospital. I have read some accounts that people noticed my eyelids were wet, and my face crumpled up like I was crying when Ernie & Ruthie went home but there were no tears – and these incidents were before I woke up. After I woke up I was too “arms akimbo” to cry. I was busy scoffing at the situation and wondering why I was surrounded by people who insisted on prolonging it.

But once I came home and began to understand that it really happened I started to cry. I never cried at Rehab – I might have sniffled a little afterwards, but not during. Okay, I might have gotten a little choked up when I talked to S (OT6) about leaving, but that was a loaded situation. The first time I really cried during Therapy was with M(37). She was holding my belt, trotting me around Planet Rehab’s “Independence Square” with the fake ATM, kitchen, diner, gas station, etc. and I suddenly lost it a little bc my legs felt like jelly and I sensed that control was slipping away so I panicked and whimpered/boo-hooed while M resolutely kept moving forward.

She could tell that I wasn’t crying all-out and I just needed to hang in there and my legs would start being more cooperative. So she just gripped my belt and said comfortingly, “You’re okay,” as we kept trotting along.

A couple seconds later the ridiculousness of the situation hit me and I started laughing uncontrollably. This time it really was all-out and I had to lean on the diner booth’s table as we passed to pull it together and M murmured something apologetic to some doctors on a tour.

I went from crying to laughing in a blink of an eye because I knew I was safe. Since then I’ve heard friends use the “You’re okay” line on their kids. Usually the child will get a boo-boo or have a run-in with another kid and they’ll turn to their parent for guidance on how to handle it. If it’s not a big deal the parent will go, “You’re okay,” and the child, having sized the issue appropriately, will resume playtime.

138.  How to Laugh when you Really Feel Like Crying

138. How to Laugh when you Really Feel Like Crying

My parents were advised to tell me what happened before I woke up so I wouldn’t freak out when I found myself in the hospital, attached to machines. Sadly, I had no recollection of them telling me what happened so I did freak out – but I couldn’t verbalize anything – I was just thrashing around in my bed and having scary dreams.

I’ve “met” a few people who have loved ones who had an AVM rupture and were still sleeping and they stumble on my blog or we meet at AVMSurvivors.org. I’ll tell them that I was unsure and just plain scared when I woke up so I need a LOT of reassurance. Essentially, I needed someone to say, You’re okay. My family and friends did this for me by staying with me and doing things like putting Vaseline on my cracked lips (thanks, Mom!) and putting lotion on my feet (thanks, Ai Ai!) PS. I never let anyone touch my feet before I got sick (I have a thing about feet). The only reason I let Boo Boo put lotion on my feet was bc I had just asked her to cut off the “invisible tape” from my legs. (I thought my lower limbs felt weird bc they were bound up in “invisible” scotch tape.) When she informed me that there was no tape on my legs (turns out they just feel like that because) she still wanted to help me so she rubbed lotion on my feet. 🙂

I didn’t read Dad’s emails until about 1.5 years after the bleed. Dad is less hands-on in terms of caretaking but this excerpt from an April 28, 2011 (3 weeks post rupture) email shows he was telling me You’re okay in his own way.

Her facial expression shows discomfort and sadness. The staff is administering some pain medication. As informed previously, we have been anticipating that as she comes around slowly and regains her wakefulness in measures, she’ll probably realize her disappointment over what has happened. Things were progressing so well and so confirmatory of her exercise to serve the Lord in Burundi. We weep with her as we discern her sadness. She is an obedient daughter and we are confident that she is willing to accept all as in her Lord’s sovereign will. We prayed and read the rest of John 15-17 to her tonight. The words “in a little while,” “your grief will turn to joy” linger in our hearts and we trust, by His grace, in hers as well.

Thanks for the vote of confidence, Dad! Actually, he wasn’t saying You’re okay – he was saying By God’s grace, you WILL be okay. And I am.

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

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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?