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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353. Team Tanimal

Team Tanimal | Ann Ning Learning How

Obviously, Ed Blueberry is Captain.

My Post-Rehab Recovery Starting Line-Up has a new name: Team Tanimal.

There are no benchers or subs on Team Tanimal.  If you’re here plan on working hard.  We’re playing for keeps and I will extract every ounce of your expertise.  I have ways and means.

“Tanimal” was a nickname from my first job.  I only heard it once (to my face) but I thought it was hilarious.  I showed up one day to visit the Maryland Brokers (I used to work in corporate real estate) and as I walked in I heard, Here comes the Tanimal.  I used to click around the office in heels and pearls, wearing very Washingtonian twin sets etc.  But they could see beyond the cover and knew I would not be leaving until I got what I needed.

These days I’m not always sure what I need – so I gather knowledgeable people around me.  To that end, I successfully recruited Coach R to join Team Tanimal last week.  Coach R is the one who wanted more info on the atrophy thing he saw going on with my left side.  But when he asked me to do a squat I was convinced that Team Tanimal could use him.

This is how my squatting skills have developed:

June 2011:  RIO (3rd Hospital)

A(2) :  Let’s do some squats!  (enthusiastically)

Me:  snicker snicker

A(2):  What’s so funny?  (in the usual longsuffering voice)

Me: Umm….I don’t think I could do those in normal life.

October 2013:  The Gym – entry evaluation

Trainer D:  Can you do a squat?

Me:  Pshaw! (scornfully) Can I do a squat?

Trainer D:  It was a theoretical question!  (I was already halfway off the table – I interpreted the question as an order.  That’s how it usually works.)

February 2014:  The Running Gym

Coach R:  Do a squat.

Me:  I need to hold something – (looking around) – do you have a kettlebell? (Realizing Coach R wouldn’t give me anything – now he hands me a weighted ball) Will you demonstrate first?

Coach R:  No.  I want to see how you do it.

Ummm…hello?  I have a brain injury. Tough crowd.  PS. He was not satisfied with my plié.  But for once it’s not Trainer D’s fault – I did a plié in protest when Coach R declined to demonstrate.  Heh heh.  The last time I saw him he upped the ante by producing a tension belt, holding one of my arms, and informing me that we were going to do standing single-leg squats.  I burst into spontaneous laughter.  And then I looked at his face and realized he was serious.

But really, Coach R is super nice, so in the following week I pondered whether I should rent time on the Alter G (the anti-gravity treadmill) or sign up for Post-Rehab sessions with him.  I decided that given the concerns voiced by my PT and CMD, my parents’ interest, and my habit of getting too excited about new pursuits when left to my own devices I’d do well to recruit Coach R in an official capacity.

So, unlike Trainer D, I gave Coach R a choice – and he said Yes, he’ll help me.  YAY!!  A couple of things he said on my first day – the “interview” – really intrigued me: 1) You could run on the Alter-G first and then when your muscles are fatigued it will be a better challenge to do the exercises after.  2) If you are able to attend to the deficits (e.g. in my hips – he had identified them within 10 minutes) you will see dramatic changes in your gait.

Prior to this I’ve been working on protecting my energy  But now I’m facing more scenarios that will require significant up-front energy  investments, and a robust chi as time goes on.  So building stamina in this context first is good.

Furthermore, it’s only lately that people (that means Trainer D) have proposed the idea of targeting certain muscle (groups) to help me reach specific goals.  I haven’t been ready to focus on isolated strengthening before this.  It’s been more about – use your eyes…walk…walk better…stay vertical…don’t lean to the side…  But now I’m praying I’m finally ready to attain a higher level of fitness beyond not falling down.

BTW when I say “run” I mean a very gentle jog on the anti-gravity treadmill.  It’s impossible to fall out, I can choose the body weight % I wish to use, and I only trot for 3-5 minutes at a time.  ORFR is an experiment to help manage my stress levels as they’ve increased lately.  That’s another reason I’m praying my body is ready for this – exercising really helps me feel better but I’m also half-waiting for something to happen.  My legs could already be showing signs of this new level of usage (it’s only been 3 weeks) – but that’s why I’ve got Team Tanimal – part of their function is to tell me if I need to go get checked out again.  (Please pray that I don’t.)  I feel like I’ve been building momentum since beginning acupuncture etc. last year, but I know from experience that regression happens and it’s disappointing but it’s a part of RecoveryLand.  My progress has been largely driven by people simply asking or just expecting me to do things – e.g. sit in a chair upright or do a plank.  So I have been busily recruiting people to do the asking and who can also teach me how to do things if I need to (re)learn.

Oh yeah – now that you’ve met Coach R fyi his name might change.  I call him “Coach” to differentiate him clearly from Trainer D, although Coach R’s certification is as an Athletic Trainer.  I’m going with “Coach” for clarity, but I’ll take his feedback.  However, the names Dr. Frankenstein, Gargamel, and Mr. Miyagi, are all taken. So I hope his heart was not set on any of those.  Otherwise, the sky’s the limit!

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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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351. Hurry

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This was one of those “oops” I didn’t know I took a picture moments.

I used to walk really fast. I think I picked it up from Mommy and Boo Boo who hustle like we’re running a race. It was noted at my first job here in D.C. I always wore heels (strangely more comfortable than flats for me) and would stride around the office with great purpose and rapidity. I’d routinely walk a mile across the White House to Old Ebbitt or another restaurant in 3-inch wedges. I miss those shoes, BTW. But they were getting super old and tired. Uncle Joe had to perform emergency surgery on them once or twice (he was a ninja cobbler).

50.  A Cup of Water

50. A Cup of Water

I retained the walking speed thing when I moved to Oregon. I ran into a friend while I was washing my hands at church one morning. She had just seen me booking it through the parking lot. You always look like you’re in a hurry, she laughed.

It was a humorous comment – she didn’t mean anything by it – but I remembered it well enough to mention it when I was babbling at Vibra (2nd Hospital) and she came to visit me. There’s no reason for me to be doing that, I told her from my side of the bed railing.

I instinctively knew that hurrying was not the mindset I wanted to cultivate nor the image I wished to present to the world. To me it was a mark of my earlier life – when I was bustling around, getting stuff done, absolutely convinced that if I just woke up a little earlier I could accomplish it all. (PS. I subscribe to the discipline of early rising but FYI you can’t get it all done. Don’t be taken in by this fallacy.)

That’s how I made friends with the night security guard at my Parking Garage on 17th. She’d see me going in and out at odd hours so we’d chat it up. You know you work too much if the same person’s on duty when you arrive in the morning that you said goodnight to a few hours before. Another indicator is if your toothbrush is still wet from the prior night’s brushing. Not good signs.

A message by Chip Ingram on how to cultivate humility voiced the idea clearly. One of his strategies was to “ruthlessly eradicate hurry from your life.” Not kidding. The man would intentionally pick the longest line at the grocery store.

I used to get so frustrated at Winco, my local discount grocery store in OR because one of their cost-saving measures is to only offer carts – no baskets. I’d inevitably get stuck behind some poor woman intent on examining EVERY can of beans on the shelf in Aisle 8. I’d be seething, wanting desperately to just make my way to the bulk food section, thinking, No really – let me help you make this purchase decision. You want those beans. RIGHT THERE. It’s really not complicated, I promise.

49.  Did she really just say that?

49. Did she really just say that?

See? I told you I was saltier than I ever let on before. But the difference now is that I won’t just think that. I’ll say it. And then Mommy will apologize on my behalf. (Thanks, Mom!)

236.  Peachy Crisp

236. Peachy Crisp

So my workaround then was to bring my own basket. I actually have several nice baskets but they’re in storage. I can’t really tote them around anymore but maybe Mommy could use them. We’ll see.

Nowadays, though, I understand that no one’s going to die if the lady in Aisle 8 wants to weigh her bean options carefully before settling on a particular can. I am also familiar with the sting of not being able to hustle. I’ve almost been run over at the store before bc I can’t get out of someone’s way fast enough and have also said stuff like, “I’m so annoyed,” if I’m really tired and I can’t pull it together like I used to. My former method was to just muscle through the timeline of whatever was on my plate by brute force. Maybe that was never great for my AVM, but the fact that it ruptured (catastrophically) eliminates the option of me muscling my way through most if not all things now. Yes, I’m learning to exert myself through breathing, using my vision and muscles differently, but this is aimed at momentary necessities like, Don’t throw up, or Don’t fall down. But I can’t pull all-nighters like I did in school.

But I’m going for the type of existence where all-nighters aren’t necessary. There has always been enough time in the day for me to get the things done that God wants me to do (including rest). That was true before I got sick, and it’s true now.

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350. Traumatic Brain Injury

TBI Awareness | Ann Ning Learning How

I might have joined the wrong subgroup at AVMSurvivors.org Oops, my bad.  They have lots of subgroups, e.g. there’s one for twenty somethings (clearly  not for me), and there are subgroups based on the part of the brain your AVM was/is.  My quandary is, cerebellum, brainstem…?  I dunno.  I saw N1’s reports when I changed insurance and they talk a lot more about the brainstem than we ever did in person.  Meanwhile, I’ve been a happy member of the cerebellum subgroup for several months.  I’ll ask my surgeon eventually and get a real answer.  I’m gonna be like, Hey, remember the time you saved my life?  Thanks for that.  I’ll wordsmith it better.  And I’ll be more grateful this time, I promise.

I’ve also been trying to figure out if what happened to me is an acquired or traumatic brain injury.  March is Brain Injury Awareness month.  However, I’ve seen it sometimes referred to as Traumatic Brain Injury awareness month, and I’ve heard compelling and definitive arguments from medical professionals on both sides of the AVM-as-acquired-or-traumatic debate.

So I’m going to play it safe here and say I’m wearing the green ribbon (green is the awareness color) around my neck in honor of my friends who live with brain injuries that are obviously traumatic.  By “traumatic” I mean that an external force caused the injury.

Friends, you know who you are.

Actually, you’re probably often the only one who knows who you are bc you could be living with TBI so fabulously it’s difficult for people to know that something happened to your brain.  All I gotta say is keep on living fabulously and be patient!  You have to give other people a chance to catch up :)

I’m also wearing this ribbon bc I keep on hearing an ad on the radio aimed at raising awareness of the “invisible wounds” service men and women often deal with when deployment ends.  TBI and/or PTSD often come home with them, too.  One of the voice-overs features a man saying that you can’t see combat without being…changed.  The emotion in his voice and the others in that ad is palpable.

I totally buy in to the idea of things being different now.  Things will always be different.  No matter how great they get on this side there will always be a line in the sand marking the date of your injury. TBI friends, I’m sending you a hug today. And every day.

349. Appraisal

When was the last time you posed with this much confidence?

When was the last time you posed with this much confidence?

We were standing in front of the mirror at The Gym and Trainer D suddenly asked, Did you ever do gymnastics?

Badly…but yes, I replied.

41.  One Leg at a Time

41. One Leg at a Time

Pourquoi? Why was he asking me this – is he clairvoyant?

No, apparently I still retain some of the movement patterns associated with a gymnastics background (even a slight one, and even post-AVM/stroke). Trainer D, you see, was formerly a gymnast as well as a soccer player, in addition to some other stuff I can’t remember. So he’s probably been reading the signs for a while now but the idea suddenly solidified and he chose that moment to ask.

Side note: I’ve asked him to spot me sometime while I try a cartwheel and he didn’t say “no.” The next time I mentioned it he indicated that he’s game. M(37) has informed me that if anything acrobatic occurs a picture will not suffice. She will need to be there in person to witness the spectacle.

I never thought I’d “work” in an industry where your physique is constantly appraised, but I do. M(37) would give me little gait-check corrections when I thought we were just walking somewhere and she wasn’t really paying attention. CMD, in addition to being able to spot deficiencies in my movement a mile away, will try to catch me unawares so she can study the balance of my laugh-driven smile or the focus of my eyes.

A long time ago I asked M(37), M, the first time you saw me did you notice the wide stance right away?

She didn’t really answer – she just started giggling. It was impossible to take offense at that kind of response – it was spontaneous and good-natured mirth.

I’ll take that as a ‘yes.’

I am surrounded by trained eyes intent on scrutinizing everything I do. It’s both funny to me and alarming since this is a very foreign world. I never had to think about my physicality in my Old Life since it was a non-issue. I was deemed to be healthy and fit, there were no barriers to my lifestyle, and my profession required mostly brainpower and the ability to carry your laptop under your arm while you walked between buildings on campus.

Now I’m actually a lot more self-conscious because of the vast changes my body has seen since this started, and the notion that I am indeed being watched by several sets of beady eyes. Don’t get me wrong – I’m glad they’re watching. I retain their professional services precisely to watch, and correct as they see fit.

But these people are a specific subset of the population concerned with mobility whereas the general public looks at one’s overall appearance. My mentality is rooted in the general public’s perspective and things like the scar on my neck and the deficits that mark my person irk me.

I thought I left this kind of concern behind when I exited the “awkward” teenage years, but they came back…with a vengeance. I am comforted when I remember the first person to ever (besides Mommy) to tell me “You’re beautiful” – it was during those awkward years, and it was CEF’s mom – we were standing in the chapel’s kitchen and she made this random comment. She probably has no recollection of this, but it was a formative moment for me that I still return to in my mind. Take note – when raising girls to be women, a word of affirmation like this goes a long way.

So now it has been pointed out to me that the way I move points to the nature of my past. Beyond physicality, I want this to be true of how I operate in general. It should point to my history of faith…but I also want it to be dynamic and directed to future growth. I am aware now more than ever that someone’s always watching.

PS. Thank you for your kind messages over the past few days. xoxoxo

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348. What’s this going to look like?

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Last week I was on a table at The Gym and I suddenly recalled the ceiling tiles at OHSU. There are many things I “saw,” but it took time and photographic evidence for me to understand that many of those things were real. I mostly saw the ceiling in the early days (when I was not seeing the inside of my eyelids).

My social worker at The Place once asked me what my first memory was and I told her about the Pretty Nurse who pinched me. I can still hear her encouraging voice calling me back to the land of the living. Voices might be even more upsetting for me than seeing the ceiling now. The sound of voices, muffled bc of my hearing loss instead of the initial haziness, still catches me off guard because I get disoriented more often than I like to admit.

277.  Wake Up Call

277. Wake Up Call

The moment at The Gym was pretty bad. But I held it together and I was the only person who knew about it. I almost told Mommy about it at teatime but retreated, telling myself, It doesn’t matter. I’m supposed to be putting all these things behind me, see. This is the No Sign of Weakness principle in living color.

But you know what? It DOES matter. And the No Sign of Weakness principle is quickly going the way of my compartmentalization strategy – it’s no longer a viable coping strategy – and once I informed her 48 hours later Mommy told me I should be telling her these things.

When I left Oregon I still did not buy in to the idea of brain injury etc. I passively allowed events to unfold on discharge day just to see what would happen. Yes, I went to church one last time, but I didn’t understand what was really going on. There was no closure and I never said goodbye to the people/places I lost the day my brain bled.

One of my neuro-psychs told me that it can be really hard if you’re cognitively intact but physically disabled since that means you’re probably going to sit around and think of what you’ve lost. I do think of it a lot, mostly when I’m supposed to be asleep.

As I’ve started writing I’ve decided the basic reason for why I do this is that God saved me from a lifetime of anger and bitterness and that is worth talking about. Friends have told me that the miracle isn’t so much that I lived (although polls indicate my survival was at least notable), but that Mommy doesn’t have to keep me locked in my room so I don’t harm myself or others. (This is the Bertha Mason principle as explained by J – another English Lit major.)

So the question of bitterness was answered definitively for me on Decision Day | The Turning Point. It’s a good thing, bc I’m saltier than I used to let on, and I’d be standing here telling people, I DARE you to try and convince me otherwise. (PS. I’m more fun now. Ask around.)

The thing is that sometimes I get sad and tired. But this isn’t an unfortunate episode in my life. This is my life. My writings’ frankness can be TMI for some bc they feel for me so much they are uncomfortable to “hear” me speak my mind so freely. Not bc they are not in agreement with the principles I espouse, but bc if I hurt, they hurt. It’s a good thing Tanpo doesn’t read this. Xoxoxo. He doesn’t need to bc he’s living it!! Heh heh.

On the other hand, frankness speaks to a wider audience. It’s the concept of recognition – there are moments of resonance when people read what I write – not all the time, but consistently enough for me to keep on doing it. People will often read my blog/book if and when they need to. If I know them they might tell me about it or else I’ll wake up, look at my WordPress stats and chuckle bc I see that someone read my entire blog (or close). I can hear the click…click…just one more….and then Okay, I really need to stop now.

As I’ve “met” people I’ve been asked for Recovery tips. I’m like, That is the sweetest thing ever that you think I know how to do this, but I’m totally making this up as I go along. True story.

But seriously, I’ve wondered how it “looks” when I’m tired and sad. Given what I believe, what kind of testimony is that? As I was struggling with this question this weekend I remembered an email I got from a lovely nurse from Vibra (2nd Hospital). In my “Memoirs” she’s known as “Anne” (p.36). She sent me a note after I sent a card to Vibra last summer. Boo Boo used to call her at 6am bc Anne was my night nurse. She was also the first person I asked for help bc I was in a lot of pain and I had just figured out how to use my voice. Prior to that I thought the words help me a lot but it was only a mental refrain.

165.  How to Get a Heart Tranplant

165. How to Get a Heart Tranplant

Based on Anne’s recollection – of the absolute scariest part of my inpatient life, hands down – my vulnerable and helpless state did not compromise the image I would have wanted to project had I been in control of all my faculties. “Powerful” was the word she used. Wow. When I read that I couldn’t even finish the email because that word knocked the wind out of me. I had never considered her perspective – I only remembered that I felt more comfortable with her around and that before Mommy would leave for the night she’d tell me she’d spoken to Anne and extracted a promise of attentive “mothering” throughout the wee hours.

Anne also mentioned that my room was always full of fresh flowers and pretty cards. (The picture at the top of this post is of a pipe-cleaner bouquet Karine and Ezra made last time they were here.) My fear was so strong in that room it must have been palpable. But there was also a lot of love.

Her summary word, “powerful,” is based on the fact that the staff really felt for me – they saw me lying there pathetically and their compassion instincts kicked into high gear as they exercised their medical expertise. As I woke up, Anne said I was always very accepting of the care they gave me.

That’s been one of the hardest things about this – asking for help, not giving it. Like when I called for backup yesterday. I’m still not sure what this is going to look like when all’s said and done, but I’m confident that it’s going to look good. Thanks for being a part of this.

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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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346. Gory

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Once I woke up at RIO (3rd Hospital) I got a shot every morning to keep me from getting a blood clot. My morning nurse was often the nice lady who admitted me and she was always apologetic about poking me in my tummy. I didn’t really care, though, since I was too loopy to understand what was going on, and the ministrations of several other nurses and phlebotomists had hardened me to the process. This was much easier since the shot went in my abdomen and there was no need to find a vein.

One morning my PT, A (2), arrived to pick me up before I had quite finished breakfast. I was ready to be done with whatever was on my plate but Nurse S was not letting me out of that room without administering the anti-clotting shot.

A, she addressed him with a very serious voice, avert your eyes. This is going to be gory.

A fixed his gaze elsewhere in a doggedly gentlemanlike manner while S stuck the needle in my belly.

All done! She worked quickly and I was free to go about my business for the rest of the day.

Her funny description of the anti-clotting shot procedure still cracks me up bc in the grand scheme of things it was SO not a big deal but even then I appreciated her vigilant attention to my modesty and A’s willingness to play along.

When I take in the scope of what happened, though, I’m willing to admit that it’s grosser than what I could have ever imagined. We were at the supermarket one day and Mommy asked me if I wanted some XYZ. No thanks, I said, I need those like I need a hole in the head.

You’re not allowed to use that expression anymore, Mommy told me. (I have a soft spot on my head where the patch of skull was not replaced. If I touch it by accident it always grosses me out.)

The actual surgery must have been gory, but Dr. SJ claims that surgery can actually be a very beautiful thing since it displays how the body is knit together. Mm hmm. I’ll take your word for it, SJ. Prior to the surgery all the blood was unleashed under the surface – yes, there was a lot of bleeding that flooded my brain but only three little drops made it onto my clothes.

All dressed up with no place to go. | Trust me, I'm a doctor.

All dressed up with no place to go. | Trust me, I’m a doctor.

This might have been while the EMTs were attending to me when I first collapsed at work. The only reason I know that is bc my sister told me they had to throw away the turquoise wrap I was wearing bc it had little drops of blood on it. That was the only thing (besides my blouse and sweater) that did not survive the incident.

I would not interpret three drops of blood as “gory,” but underneath the surface it was truly harrowing. It’s the same way with so many people that I meet. The surface looks ok – placid, even. We’re trained to present a socially acceptable exterior to each other. But you never know what’s going on below.

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