460. T-Shirt

 

“It Got Better.”

 

Thank you for praying for Mom Bjorlie – surgery went well and she woke up in good time. Please continue to pray for a fast and full recovery!

The day after Peter was born all of us were together so we went swimming with the kids at the hotel. Ezra was just becoming conscious of the difference between his swimming attire and the “big boys” and had recently declared his intention to go shirtless in the pool. But when he saw me in my pool therapy get-up, rash guard and all, he was puzzled. “Aunty Ning Ning,” he asked, “Why are you wearing your shirt in the pool?”

Tee hee. Poor guy. He asked me very solemnly but it was hard not to laugh and squeeze him with his skinny little arms sticking out of an impressive flotation device.   I considered joining a regular pool when I left Pool Therapy and before I found my Trainers. I had plans to go talk to the Life Guard on duty when I showed up since I didn’t want anyone to be nervous, but abandoned the idea when I read that there were no flotation devices allowed in the pool I hoped to join except Coast Guard vests.

So this ruled my Aqua Jogger out. I learned to wear a belted floatie in Pool Therapy. I also learned to wear a rash guard at Pool Therapy. I know at least two other Pool Therapy patients who wear a shirt in the pool to cover their scars.

19. Pool Therapy

One of them I met while I was in the water one day. He was in a wheelchair but was so strong he eschewed the lift customarily used to get wheelchair patients into the pool and just used his arms to lift himself down the ladder. We smiled at each other politely and his demeanor was so gentle and he seemed like he was my age so my curiosity got the better of me. It helps that when you’re in a Therapy Pool it’s obvious that stuff has happened to both of you so it’s a lot easier to ask and answer questions. Is the goal for you to walk again? I asked nosily.

Yes, he answered. Then I think he asked what happened to me, and then he volunteered, I was shot three times in the chest.

Wow. You don’t meet someone like that every day. He told me this very matter of factly. I seem to invite a higher and more immediate level of trust now that this has happened to me and I know from experience that it can be a relief to share information without the fear of freaking people out, so I try not to freak out when people tell me stuff. Trauma hardens you to a lot of things – you’re better equipped to handle it when someone else tells you what’s happened to them – but it still makes me sad :(.

Especially this guy, who went on to explain that he had been shot three times in the chest bc of the lifestyle he had been living and now that he had been in a chair for three years he was working on walking again and living better now that he knew the consequences for living how he used to, and now that he had a daughter to care for.

Lately I have realized that even people I think I know well are often carefully controlling the flow of information that populates the background of our relationship. They do it out of necessity – it’s how you learn how to deal and maintain a certain level of functionality in life. I know because I do it myself.  But there are times and situations that lend themselves to information sharing. And even though I flatter myself that I’m tough enough to handle whatever you’re going to disclose, it might still break my heart…but I won’t tell you. If you lived through it I can listen to it.  In fact it’s my honor to do so.  I’ll just pay you the compliment of not flinching, thank you for sharing that information with me because I know it cost you something to say that out loud, and take your need straight to the One who carries all of our griefs and sorrows.

Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted.

Isaiah 53.4

 

99. Mirror Image

One of my favorite passages in all of Jane Austen’s work (besides the fruit pyramids in P&P) is the part in Persuasion where Admiral Croft describes Sir Walter Elliott’s dressing room.  Background:  Sir Walter is a handsome man who is extremely vain and rather silly.  He is old enough to have three adult daughters.  Sadly, his wife died a long time ago, and any sense of economy died with her.  As a result of his financial ineptness, Sir Walter is forced to “retrench” and so relocates to Bath and rents out his estate to hopefully get out of debt.  Admiral Croft becomes his tenant.

Admiral Croft visits with Anne Elliott, the second daughter of Sir Walter, and the heroine of the story, and the Admiral tells her one of the first things he did upon taking possession of the house was to move all of the looking-glasses out of Sir Walter’s dressing room.  Your father must be a rather dressy man, he tells Anne, There was really no getting away from oneself!

I love that line.  It speaks to how silly/vain Sir Walter is and how different the Admiral’s lifestyle is.  I often feel like I’m in Sir Walter’s dressing room when I’m at therapy because at every hospital, the gym is lined with mirrors.  When the mirror on the wall is too far away, they have full-length mirrors on wheels that they can roll right up to you so you can see yourself up close.

I used to look in the mirror in my room or in the gym at RIO (3^rd Hospital) and ponder the scar on my neck and how my hair was sticking out in funny places.  There was a large shaved patch in the back where they operated, and a small pokey thing in the front where a drainage tube once resided.  I would look at these things and think, Okay, maybe I did get sick after all.

I wasn’t sure since I had been asleep for the worst of it (thankfully).  I still don’t have the feeling of being “present” at the events I’m told happened.  Instead of viewing my own timeline as if I’m looking at my reflection in the mirror, I see pictures/videos, or read updates written by Tanpo or Ai Ai.

Tanpo has been helping me edit my “Memoirs” recently and he commented on how short the OHSU and Vibra (1^st and 2^nd Hospitals) chapters are.  Well, I was kind of asleep, I explained.  He suggested that I read up on what happened so I’m more aware of just how much the staff at those facilities did for me and can write about it.  I recently read through Ai Ai’s Facebook updates and I was like, Oooh – what happens next?!  And when I came to the part where she had to go home to her family after visiting me in Vibra I was sad.  I felt the same sadness I felt but couldn’t express when we were living that moment and I told her, “Quick – eat some cookies – chew fast!”  I was still pretty loopy and was concerned the poor girl was too skinny.  So I wanted her to eat some cookies in my presence before she got on the plane.

Last week I commandeered Tanpo’s phone in the car and scrolled through his picture gallery.  There were lots of pictures of my hospitalization I had never seen before.  One of them caught my attention because there was a skeletal face with one eye open and my hair on its head, body propped up weirdly in a chair.  “That can’t be me,” I thought.  And when I scrolled to the next picture the skeletal face looked even worse (there was a strange grimace), but the face was undeniably mine.  “Okay, that’s me after all,” I thought.  I will not be sharing either of those pictures with you – you can thank me later.

A few weeks ago I had lunch with some friends and I made a cavalier-sounding joke about the onset of my illness.  “You don’t know what it was like,” J told me in a jokey chastising sort of voice.  Her statement was funny at the time, but it’s also terribly true.  I really don’t know what it was like even though it happened to me.  I’m dependent on what other people tell me or what they recorded at the time.  Tanpo was the primary documenter, but I’ve read Ai Ai’s updates more recently.  All you need to know about that time period is summarized in three words:  e-coli and spinal tap.  ‘Nuff said.

I showed those pictures to Mommy later that day, and I totally cried over that first one that I didn’t think was me initially.  I cried because it looked sort of gruesome (even though there was no blood or even swelling), and also because I didn’t think it was me.  I have no recollection of any such scenario, and in the pictures I’ve seen thus far I’ve either been more awake or fully asleep – not this strange in-between state.  But then Mommy scrolled to the next picture (the one that I thought got worse) and told me, Look – you’re really happy here.  And sure enough, once we zoomed in I could see that the scary grimace was actually a facial contortion meant to convey happiness.  I can understand why.  The bandage on my neck indicates that my trach had been removed, and Mommy is standing next to me with a paper cup presumably full of ice chips.  My mouth is probably half open so it can receive the spoonful she is about to offer me.  According to my sister’s account, I had been asking for ice chips for at least 5 days.  The relief I felt when Mommy was finally able to let me suck on some ice was wonderful – I remember that part clearly.  So even though that picture is painful to look at I’m glad that moment was captured.  It’s characteristic of this whole experience – hard to look at, but joyful.

Another favorite mirror image: (I was learning to tie a ponytail.  Can you tell?)

220. I’ve Got this

 

41. 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 3^rd 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.

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.

413. A Walk in the Park

I celebrated 3 years of walking on Sunday, September 21. 3 Years! I know, I told an AT at the Running Gym as we chatted while I was on a recumbent bike, You’re like ‘3 years and it still looks like THAT?!’

Ok, maybe I’m the one who really thinks like that – but to people who saw me early on when I was a brand new walker, or still in a wheelchair, I’m vastly improved.

After going to Oregon I decided to mark this anniversary by going to see Dr. A6 Frankenstein (the one who taught me to walk). He is no longer working at The Place, but at a private practice and we eventually settled on meeting at a favorite park near our houses. He was on his way to go pick up the kids so we got to enjoy the weather for an hour. If he shows up too early the kids are not amused – it’s like, Dad – we’re not done playing.

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

He saw Mommy and me from a distance and when I tried to go give him a hug I realized I was going to have to do all the work since he was busy standing there, scrutinizing my gait. Guys – let me just state this up front: unless this kind of looking is part of your profession you cannot get away with it.  It was hysterical – I wasn’t anxious about seeing him after all this time (since Dec ’11) since we’ve corresponded and he’s read some of my writing and my writing voice is very similar to my speaking voice, so I felt like it was quite natural.

He’s the same, but apparently I’m quite different. C’mon, let’s take a walk, I said after a while. By this point Mommy had gone home and J (Team Tanimal’s Recreational Director) had joined us. She now has the distinction of meeting A2 (my main PT in Oregon), A6 at the park, and this week she’s taking me to see Coach R (I’m thrilled bc this means we get to play after I work out).

We walked around a nearby play structure and I asked him, So what’s different?

Everything.

His reply was immediate and absolute. Another difference was that I talked to him freely. When I was at The Place talking + walking was a multitasking scenario I wasn’t deemed ready for yet. So I told him how I used to take Hannah and Joshie to this park and made them wait, hoping the ice cream truck would be arriving soon. It would be so hot and they’d be hiding under a bridge or a slide for some shade and I’d be like, Don’t worry, kids, the truck is gonna come soon – I can feel it in my bones!

The best part, though, was when we were just sitting at a picnic table with J.

A6: You’re more verbal.

Me: I know, right?!?!

 

 

 

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

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?)

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?)

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.”

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

386. Shoes

Peter and his first pair of Big Boy Shoes

When I started Therapy I wore grippy socks since I was transitioning out of the bedridden phase. Soon A(2) told Mommy I should wear sneakers. So out came my favorite Nikes – by the time I learned to walk the hole in my right toe was obvious, and a new one was forming on the left.

I refused to part with them, though, since I was determined to learn to run in them. Yeah, that didn’t go as planned. I finally let Mommy confiscate them bc I knew the holes were getting to be too much for her to bear and I moved on to different shoes. I’ve worn several kinds of sneakers since and realized that my feet are more sensitive now.  When I learned to walk I immediately developed callouses. It happened when I started using the AlterG more, too. I need to use an Emjoi (I gifted my sisters with this little tool and I LOVE it – it’s a must-have for my mobility advancement. PS. this is a non-afilliate link).

63. Everything is *Completely* Under Control

I used to poll on whether or not I’d wear high heels again. But at this point I keep my feet as close to the ground and covered as often as possible. I ran over them one too many times in my wheelchair before I started wearing sturdier shoes. I also need as much support/stability a pair of shoes can give me.

Unfortunately my Trainers like the idea of feeling the ground sans soles. When Trainer D told me to take my shoes off so I could do some balance work I protested vehemently. He just grinned amusedly which only made me talk louder and longer. Why are you smiling?!?!?!? That means you are NOT HEARING ME.   Oy. Where do I find these people?

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

 

Coach R sprang the same idea on me a few days later. He said, Do these come off easy? (This is Rspeak for “take your shoes off.”) Immediately I was like, Oh no, R. Sorry – these STAY ON. This is one of the cardinal rules of Recovery for me: “Protect your feet at all times.” It’s right up there with “No sign of weakness.”

It makes sense since I am still learning to use my feet and legs appropriately and am invested in safeguarding them. That’s why I was addicted to my aircast for so long. But Coach R got me to take my shoes off once while I was seated so I really had no excuse except that feet (particularly my own) gross me out. He said the usual, Do these come off easy? I was caught off guard and couldn’t think of a reason to refuse. Plus we had only recently met so I wasn’t ready to issue an outright negative. (That shyness wore off rapidly.) So I took them off and he checked the strength and range of motion etc.

There was a lot of foot touching. Ewww. When some friends came to see me when I first flew home JPAS said to me, Ning, I need to tell you something. I don’t want this to ever come between us. (He let the dramatic tension build.) I touched your foot in the hospital.

 Blech!! JPAS and JLSS had flown out to Vibra (2^nd Hospital) while I was still asleep. I thought it was so funny that was the first thing he chose to tell me.

When Coach R checked my feet he remarked again on how my toes are always pointed.  Apparently no matter what we’re doing my sneakers are constantly tilted. I didn’t notice this until he said something. Old habits die hard. In the same way that I always point my toes I also always cringe inwardly when dealing with feet. Coach R has trained teams of sweaty students, professional athletes, and Olympians, so I’m pretty sure the only person grossed out by the foot touching was me. It took all of my (admittedly compromised) self-command to keep from throwing up right then and there.

It is still remarkable to me that this is what my life is like now. What would have NEVER happened prior to my injury happens regularly in RecoveryLand and my job is to accept the help with thanks.

I gave away all of my shoes from my Old Life – there were a lot of them! Except my favorite pair of strappy red heels – I’m holding on to those out of pure sentimentality. I used to imagine wearing heels bc I regularly imagined wearing my old clothes and pretty shoes were appropriate for my wardrobe then. Times have changed and I’m actually content to wear what I do now.

65. You do what you can

I also used to really miss the sensation of standing on my hands or doing a cartwheel etc. Trainer D is willing to spot me and I’ve considered doing it just to make M37 laugh, but my eyes/head have been rowdier than usual lately so I’ve finally admitted that I probably shouldn’t attempt any (even relatively static) acrobatics. I held on to the memory of doing those things since they’re not something I do routinely like stairs or walking so I could remember the sensation of pressing your digits into the floor and shifting your weight to keep your balance.

I clung to that memory like I clung to the hope of wearing heels again as a souvenir from my Old Life. But now I’ve said goodbye to my shoes and admitted that my muscle memory is damaged. (I know – you’re like, Seriously – it took you all this time to figure that out?!?!) But I’m not admitting defeat – these things are simply no longer important to me.

 

Happy Father’s Day 2014

Happy Father’s Day, Tanpo!!  Father’s Day is this Sunday, June 15, so please plan accordingly.  FYI PT is the abbreviation for “Physical Therapy” – I get these shirts from 3ELove, a company a friend mentioned at AVMSurvivors.org.  PT is also Dad’s name – so that’s why I think it’s so fun to take selfies of me wearing it and send them to him.

It has been a big deal to me to become a child again in many ways.  I was 30 and completely independent when this happened but now Mom and Dad routinely come to my room around 9pm and order me to go to bed.  (They’re right, BTW, an early bedtime helps.)  But one of the things I only really started to appreciate as an adult, but that I truly received the benefit of as a child, is that I have always been able to ask my Dad hard questions.  Not everyone has that kind of resource living under the same roof.  Thanks, Dad. xo

18.  Dad, tell me that thing again…

The “Spine Place” at Planet Rehab – note the fun spine artwork

I went for a nice walk with PT37 in the Therapeutic Garden at Planet Rehab on Thursday.  Leo the Cane stayed behind in the gym since one of my goals is to walk sans assistive device, so we’re practicing.  Now I know I said it was a goal but I kind of assumed we were going to work up to it.  Mommy, however, has allied herself with PT37 and now just hands her Leo when we meet in the waiting room before Therapy.  Anyway, the weather was so beautiful and there were nice long pathways that were also wide – perfect for fitting a wheelchair or two people (one with an abnormally wide stance, like me).  After a long downward slope we came to an outdoor staircase.  It was actually more like 4 mini-flights and PT37 just said three words:  “Up the middle.”  I tried to hide my horror, but I think she sensed it since she assured me that she was right beside me, and I could feel her holding the gait belt firmly in back of me, so there really was nothing for me to do except follow instructions.

If I ever hesitated at The Place I’d hear PT6 start talking and I’d look at him out of the corner of my eye since turning my head entirely is risky in that if I’m not looking where I’m going the likelihood of falling increases exponentially.  “I’m still with you,” he’d say, or some variation thereof, but the rough translation was always, “Get a move on because I won’t let you fall.”  I could usually sense the couple of fingers PT6 kept on the back of my gait belt, but if I couldn’t I’d peer into any reflective surface we passed to verify his location.

I once heard OT6 coaxing a patient out of his wheelchair.  His session was after mine and I could see what was going on from my vantage point on the recumbent bike.  He was sitting back in his chair, refusing to budge, and OT6 told him with great conviction, “I promise:  I will not let you fall.”  I think twenty years of experience lent her voice credibility and pretty soon that man was out of his chair, pushing that giant shopping cart across the gym like I used to do.

So the promise of fall-prevention, or just the mere knowledge that a licensed professional is standing next to me has been enough to get me to do all sorts of things in Therapy I’d never do otherwise.  This pattern became more prevalent when I became an outpatient.  As an inpatient I think fall-prevention was more implied than spoken, plus I didn’t really care at that point – I just did as I was told.   We were busy doing things like sitting, standing, and steering a walker while keeping it on the floor, so the risk factor was lower in general.  When I returned to Therapy at The New Place in August one of the evaluation tasks was a “Dynamic Gait Test.”  This included walking and then turning my head left/right/up/down when PT30 said so.  When she explained the instructions to me my face must have been like, Ummm…I think you’re insane – because PT29 immediately put her clipboard down and told me she’d hold my belt while I did this.  That was all I needed to hear, and I immediately focused on walking down the hall without any further ado.

I haven’t felt fear like what I felt about learning how to walk, or how to climb stairs without holding on to anything, since I woke up in the 2^nd Hospital.  I wasn’t lucid at that point and I had no recollection of Mommy telling me what happened for the past month+ so when I woke up I was really confused.  I was so scared I’d say anything to delay my parents’ departure for the night.  Once I said, “Dad, tell me that thing again about ‘Immanuel, God with us.’”  I knew Dad had been enjoying a meditation on this subject and had shared it with me the day before in an attempt to show me how I didn’t need to be afraid.  Tanpo drew a chair up to my bedside and settled in and I triumphantly rested in the fact that I had gained an extra 10-15 minutes.  (Side note:  Mom says she had no idea how naughty I was until I got sick.  I’ve always known my capacity for naughtiness.  I think it took some skill to hide it from my own mother for 30 years!)

Now that I’ve moved beyond that early stage of fear and disorientation I’ve realized that aloneness is still an anxiety-trigger for me, but knowing someone’s got your back is a powerful antidote.  If I ever lift the curtain (even just a little) on how painful it is for me to watch life pass me by while I clutch my stuffed horse (no offense, Ed), even the people nearest to my heart don’t know what to say.  I don’t blame them at all – I certainly wouldn’t know what to say, and I’m not sure if there’s anything really to be said in a situation like this.  I’m just grateful for their presence and their willingness to play my game of, “Let’s pretend nothing happened!”  So yes, this situation has been incredibly isolating, but I just have to remind myself that I’m not alone.

Matthew 28.20 “…and lo, I am with you always, even to the end of the age.”

373. Breakfast of Champions

 

I made this picture for Boo Boo. I love how the cupcake is winking at me.

 

Trainer D often demands, Did you have a good breakfast? and What did you eat? One day I replied sweetly, A cuppy-cake [smile/lopsided grin], and then I was gonna have some oatmeal but I skipped to the brown sugar – straight up out’the box.

🙂 FYI this is how I roll 80% unfiltered. I assure you I was a real treat to work with right when I woke up and was 99.9% unfiltered.

Around that time at RIO (3^rd Hospital), a friend visited and slid a 3-pack of my then-favorite gum on my nightstand. He showed me the ropes of A/V duty at church and one Sunday we had to be there early to set up. Neither of us had eaten breakfast so I gave him some gum (Trident Stripes – strawberry/orange). That’s right, T, I said, Breakfast of champions!!

I didn’t know if he was real at that point in my hospitalization but I recognized my favorite gum and I appreciated that he remembered what I liked.

A favorite part of my Oregon trip was communicating to people that I remembered details of my Old Life that they had had a part in, and to express my appreciation. The first person I saw at RIO (3^rd Hospital) was not one of my therapists – it was the Resident Hair Braider – the OT routinely enlisted to braid patients’ hair when occasion required. On the morning I flew home M (OT3) summoned her to French braid my hair for my homeward bound trip. When she entered my room I greeted her – Hi, A.

You know my name! She was impressed bc I’d only seen her a couple times before. When I saw her in April it was my turn to be impressed. I saw the back of her head as she disappeared into a stairwell but I called her name in a questioning tone. She took one look at me and instantly remembered. This was notable since I had not been her patient and I looked very different when I stayed there. Let’s just say that the transition from bedridden to not bedridden was a rough one on a whole lot of levels.

After three years I was able to tell her that her braid had lasted all day and night – after the trip my family had somehow managed to get me inside the house and into my downstairs bed (I was still wearing my airplane clothes and hair, but was so wiped out I didn’t care). One of the ways I steeled myself for the trip was by telling myself I needed to go to my hospitals in order to thank people. A lot of thank-you’s remained unspoken – e.g. thank you for saving my life, for teaching me to sit up, for being kind to me when I was afraid, for believing I’d wake up even though it didn’t look too good at the moment. But the thank you’s I did say, like for that fantastic French braid, and to my friends from work and church, were heartfelt and I hope my peeps were glad that I remembered their contributions to my Recovery.

308. No Sign of Weakness

These days I’ve started hanging out with people who belong on the front of a Wheaties box. Well, maybe not CMD. She’d be on a box of chi-strengthening herbs. But it’s not their Wheaties-candidacy I value the most in them. True, the nature of my injury (its severity and the opportunity to recover) requires a sky-high skill-level (or it could just be that I’m picky, but whatevs), but I’ve found (note: in my individual experience) that personality fit often trumps specificity of training.

250. Learning How to Walk

While I recognize their professional expertise it’s the small things outside of their job description that offer me the healing touch of human kindness. Although I’ve worked with absolutely fantastic neuro specialists in the past the common denominator among the people I’ve worked with successfully is two-fold: 1) They know how to laugh, 2) They are nice.

I’ve learned that I have a greater chance of getting what I want if I present my credentials in the way I wish them to be interpreted. Hence the posturing of RecoveryLand. I’ve been told that one of the biggest differences in my post AVM personality is that I used to be all about the presentation. (Apparently I was able to exert an incredible amount of self-control then.) My instinct is to still try to present myself as strong, capable, ready for action, etc. since this kind of attitude invites a higher level of rigor, but sometimes my body parts don’t cooperate – I have a motor skill malfunction or my tremor chooses an inopportune time to distinguish itself. I know from experience that an Occupational Therapist would sit there until you complete the task. But these people, who do not hail from the (acute) Rehab world, see my weakness and intervene.

They don’t make a big deal of it – they don’t comment at all. And I’m so busy trying to cultivate a certain image (Let’s get to work, people – there’s no time to lose.) I don’t have time to be self-conscious when a deficit highlights itself. But in the same way that I appreciate when other people remember my preferences I will always remember these small acts of kindness and think of them as proof of your skillfulness as a professional and as a person.

 

 

 

366. How to Get the Most Out of Therapy

152. 10 Tips for Learning How to Walk

A few months ago a reader posed a question on what to do if you’re not getting what you need out of Therapy. It has been wonderful for me to get in touch with so many aspiring walkers since I wrote 152. 10 Tips for Learning How to Walk Again. I think this person was troubled bc sessions seemed to be 80% chatting, 20% exercise. So I wrote back via email and have edited it slightly for public consumption bc I think it’s useful information. I’ve also written on 127. How to Enjoy the Rehab Process, which might be of interest, although I’ve begun to think that my experience may not have been representative as I’ve had a disproportionately high number of excellent PTs. Also, my POV has developed as I’ve started paying for more things out of pocket. When my insurance paid for everything I accepted my Therapists without a thought (it helped that they were fabulous). Now that I’m largely financially responsible and have more experience I have developed my own selection process and have become choosier. Like I said a couple weeks ago, I don’t have the time or money for anything less than fantastic.

 

127. How to Enjoy the Rehabilitation Process

This is what I wrote: …I’m not sure how healthcare works in your country, but when I was that early in the rehab process I went where insurance sent me, and also bc I knew we’d have to be there 3x week I went to a place close to home.  I am assuming you will not be able to pick up and leave clinics without extreme deliberation, so I would say the best tactic would be NOT to burn any bridges but to try and turn the situation around.

It could be that the PT is a good practitioner, but just a chatty person.  If the PT is not a good practitioner, that’s another issue, but there is a way to find out:  At every hospital I’ve been to there has always been a very clear goal-setting process and periodic evaluations.  A critical question I asked before signing up for Vision Therapy was:  How often and in what manner do you measure progress?  I have always been guided by the specific tests and tools they have been trained to use (that’s not my area of expertise) but the main thing was for me to signal that I have specific goals and I wanted to make sure there was an evaluation process.

 

My family really helped with this.  At my last inpatient hospital they had a weekly “family conference” where Therapists from all disciplines, my doctors, a nurse, and social worker all gathered with my parents and me (my siblings were on the phone) to go through my progress.  My first outpatient hospital did not have this practice but my father insisted that such a meeting take place (and it did).  I cannot overemphasize the importance of family and loved-ones’ advocacy.  The fact that my room was always full of cards, flowers, and people – and that even now as an outpatient and in my post-Rehab life my parents (mostly dad) hover nearby the session (Daddy pretends to read a book) is an unspoken indicator to the entire staff that people are invested in the quality of my care, so it had better be top notch.  My Mommy is the nicest, sweetest person ever – but the staff could just tell by the way she attended to me that she had the highest standards for my care and fully expected everyone to meet them.

Call a meeting if you have to, but the first goal should be to set some measurable goals and inquire as to the plan of care for how to reach them.  If they give you a timeline, that’s great – but don’t stress out over it.  The timeline would only be good in terms of making sure the staff has a big-picture goal orientation.  I was so horrified when I did not walk by the date someone mentioned to me.  Granted, no one knew at that point that the damage was as severe as it is, and the person who gave me the timeline was not my regular Therapist, but the point is that I walked when I was ready – no need to stress out about it beforehand.  If it becomes apparent that the PT’s skill level is not allowing the patient to progress I would escalate the matter to the head of the department and ask for a change if necessary (just choose your words carefully and keep things cordial as you’ll likely still have some level of interaction).  At this point you would have some documentation on goals, evaluations, and lack of progress – and documentation is always key in managing performance issues.  At work you always want to set expectations, provide a framework for achievement, and if the person is unable to produce results it’s not bc they did not have the chance.  I approach Therapy the same way, but thankfully I haven’t had to manage anyone out of my PT life.  There was only one practitioner who wan’t quite what we were hoping for.  I was still barely lucid so I didn’t really care, but Mommy was ready to take decisive action ASAP.  That wasn’t necessary since he was gone within a week, anyway.

In general, you have to learn to manage your Rehab life or if you’re the caregiver, do it for someone else.  Yes, this is your Therapists’ livelihood but it is impacting your life.  Unfortunately you will not have boundless resources to invest in this process so you have to learn how to play the hand you’re dealt and do some maneuvering to position yourself as well as you can.  Again – it’s your life – so even though it’s a lot of effort, it’s worth it.