459. Lean On Me

💗Please pray for Mom Bjorlie as she prepares for surgery tomorrow/Friday! 💗

Before I learned how to walk I learned how to stall. When Dr. A6 Frankenstein told me to leave my walker behind and just hold on to his hands I was so scared I tried to buy some extra time by asking, “Are you sure?”

“Yes,” he answered (with great finality).

“Quite sure?” I pressed.

Yes he was sure. PS. He offered me his hands but I gripped his forearms instead. I tried the same trick on R8, who treated me sometimes at The Place. When I asked him the 2nd time (Quite sure?) he responded with, “I’m sure – are you sure?”

But he knew I was afraid so when it came down to it he told me kindly, You can put as much weight on me as you would on a walker.

Note: You’re not really supposed to lean in to a walker. R8 was one of the PTs who told me this. He was just trying to make me feel better.

I didn’t feel better but consoled myself by leaning heavily on both of his arms.

We’ve come a long way since those early days when PT was more of a contact sport since I was a greater fall risk. The guarding style has become looser as I’ve gotten better, which is not to say it’s not vigilant – I’m just given greater liberty since I can self-correct more often now.

Example: One day Coach R said we were going to do a side lunge walking sort of thing. So I eventually made my way to the yellow line on the floor that was supposed to be my guide, took both of the proffered hands and started to do my duty.

Uh oh. As I leaned to the right – not even my left/weaker side! – I felt my entire leg collapsing. We both braced, I avoided contact with the floor, and eventually got my feet under me so I could stand up. But it felt like we were there forever – arms locked, and me trying not to fall. Coach R has told me multiple times that it’s good that I have enough upper body strength to use him to stay upright.

Mmm hmm. I’m just saying that if I had been wearing the gait belt I only recently removed from my purse since no one lets me wear it anyway, that wouldn’t have happened. Yes, we would have had to enlist someone else to actually hold the belt, but the more the merrier, I say!

One morning I saw Trainer D and he had chosen (infuriatingly) to only speak Spanish. I took this as permission to ignore everything he said.   He can communicate well enough in gestures so I was getting ready to do something and I told him I was nervous about keeping my balance.

He opened his arms wide, the ample spread indicating, I’m right here! What could possibly go wrong?

I looked at him with the arms open and the mouth smirking. I think he was holding a water bottle or something. That’s your ready stance?

My open doubt made him laugh bc of course he was planning on keeping things safe – he just likes to see my squirm first.  So he moved closer to my side and then he forgot himself when he saw how appalling my form was on the first rep so he corrected me in English. Once we were speaking the same language I really grasped what he was saying and shifted my weight etc. appropriately.

Several months earlier on my first day back from OR and Boo Boo’s house we were at the same spot in the Gym except I was seated and was supposed to do a twisty balance thing with a medicine ball but Trainer D refused to let me wear my gait belt. Boo Boo was visiting and stood nearby.

Hey, D, I said, twisting to my left and trying not to fall off the bench, Remember that time I was glad to see you?

I’m happy to see you, too! He immediately replied.

[Me, out loud]: Yeah, so I think I might be over that now.

…[Laughing]…

[Me, internally]: Wow – you really walked right into that one, didn’t ya there, Buddy?

He laughed, I did not fall off the bench, and he provided a ton of evidence for Boo Boo that he is the cheerful, neuro nerdy, and Animal Muppet-ish person you read about here.

A friend and fellow AVMer recently told me her son had noted the return of her sarcasm as a true mark of recovery.

I must be really healthy.

Or maybe I’m just mean. You decide.

 Ann Ning Learning How |Nonprofit books on Amazon!

41. One Leg at a Time

One leg at a time

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

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

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

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

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

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

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

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

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

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

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

250. Learning How to Walk

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

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

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

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

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

12.  Learning How To Walk

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

73.  Stronger

73. Stronger

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

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

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

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

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

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

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

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

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

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

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

135 x2. There’s no crying in baseball!

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

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

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

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

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

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

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

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158. Floppy Me

Aren't these lilacs pretty?  They didn't bloom the year I got sick, but now they're back in action (like me).

Aren’t these lilacs pretty? They didn’t bloom the year I got sick, but now they’re back in action (like me).

I had a funny moment yesterday.  I was having a cup of green tea right before 6 o’clock (this is when my drinking window closes – I was advised in the hospital to limit liquids after 6 so I wouldn’t be getting up all night), and I remembered that Katie’s Red Velvet Brownies are indeed NOT dairy free as I originally stated (unless you use soy yogurt).  So I fixed all of the pictures/text I could that was already online, and I apologize for misleading anyone.  It was unintentional, I promise.  I blame the brain injury.  In case you missed it, a large chunk of my cerebellum is missing.  The cerebellum isn’t in charge of remembering the ingredients in a recipe, but I surmise that messing with one portion of the brain didn’t have a truly isolated impact.  I have never asked my surgeon how much since it doesn’t really matter anymore – I’m proof that you can live with a partial brain and knowing the hard number (I do know a ballpark via my neurologist, but I don’t state it publicly) won’t impact the way I live.  I feel the way I do, and I try to compensate – it’s been the same since before I was aware anything had been removed during surgery, too.  I just trot out the fact that I’m functioning with fewer grey cells than pre-AVM as a convenient excuse when I have a brain flop moment.

Side Note:  I saw a heartbreaking picture yesterday (like the one below) of wheelchairs waiting behind a police barricade at the Boston Marathon.  I have been assured multiple times that removing anything during surgery is a necessary life-saving action, and nothing is removed unless it HAS to be removed.  I would assume the same rule for amputation.  To those who lost limb(s) at the marathon, in combat, in a car wreck etc. – you can and will learn to live again.  

from yahoo news

from yahoo news

A brain flop moment is more desirable than a falling flop moment – when you actually fall while walking.  The first time I fell in public my sister consoled me by telling me a story of a lady walking into the elementary school at the same time as Ai Ai.  The lady tripped and her stroller went rolling but thankfully my sister caught it and the baby before they got too far away.  So falling happens even to perfectly able-bodied people.  It just happens more often to me than you.

Falling is becoming such a normal part of life I’ve learned to barely notice it any more.  I might lose my balance and gasp, but I move on as quickly as possible since it’s such a commonplace occurrence and I’d rather continue the conversation I was having or keep my activity going, etc.  A few weeks ago I was at Pool Therapy and E asked me if there was anything new going on.  I had been absent for a while and I showed up with my back hurting.   “Any falls?” she asked.  “Not on the floor or anything,” I told her.  But then I thought a little harder and was like, “Okay, maybe once on the floor.”

I had honestly forgotten!  I’m glad I’m able to forget things like this.  Of course, I’d rather not fall in the first place, but since I do fall I’m pleased that it doesn’t rattle me like it used to.  It’s a common saying that if you fall, you get up again [and do whatever you were trying to do].  It helps that I know how to fall, and am used to minimizing the chances of sprawling on the floor.  But even in handling the mini-flops (e.g. when I can brace myself against a wall or a piece of furniture) I am too interested in living life to be distracted for long.

Ed would like you to read this:

152. 10 Tips for Learning How to Walk Again

10 Tips for Learning How to Walk Again || Ann Ning Learning How

I love looking at the WordPress page that tells me the terms people have entered into a search engine and that’s how they find me. No one finds me (as far as I can tell) because they Google, “What is an AVM?” People are more likely to search for really random stuff, e.g., What is a folk hero, Gabby Giffords, the nuances of ice cream, parting the wild horse’s mane, acupuncture and cupping, and this week, someone searched for “learning how to walk again.” So I figured I’d take the bull by the horns and write down some things my PTs have taught me as I’ve been learning to walk again (Caution:  this is a work zone). If I forgot anything important I’m sure M will tell me.

Please remember what I said Monday: my condition is in flux, and I am privileged to have the opportunity to regain (some) skills that I’ve lost. I have dear friends who do not have this privilege and are learning/have mastered the art of wheelchair living, how to deal with a degenerative condition, or how to deal with paralysis that enters your life in the blink of an eye and stays. Forever. If you fit this bill, <3. Come back tomorrow because this afternoon I practiced my kitchen mobility and made something just for you in celebration of your hardcoreness.

In the meantime, here are some of the tricks that have helped me learn to walk again. Some of them are ideals I have not attained yet, but a girl can dream.

Tips for learning how to walk again:

1) Use your core: I have only a vague notion of what my core is, but all this time I’ve just imagined that I’m an apple and I have to focus on my core, or I’m supposed to engage the trunk of my tree. I make jokes about it, but seriously, the core is where my stability begins. Strong core = steadier sitting, standing, walking.

2) Dig in with your toes: If you’re working on balance, use your toes for all they’re worth. If you’re falling forward, press your toes into the ground and fight to remain upright.

3) Tall Tall Tall like a Tree Tree Tree: Resist the temptation to hunch over your walker because you’re leaning into it at full strength. Normal walkers do so in an upright position.

4) Midline: This goes with number 3, but again, posture is key. You also want to stand/walk so if someone saw you they could draw an imaginary line down your middle and you’d be symmetrical. Evenly distribute your weight on your legs – don’t lean to one side, like I do.

5) Breathe: PTs have an uncanny ability to tell when you’re not breathing, even when you’re not aware that you’re holding your breath. Also, M (37) has informed me that breathing in is not enough. I have to exhale, too. She’s so demanding!

6) Stance = Hip Width: People like me often use a wide base of support when walking because we think it helps us balance better. (What do you do with a drunken sailor?) But a more natural gait includes having your feet about hip-width apart.

7) Rotate your hips: Well, don’t sashay out of control or anything, but there is an element of hip-rotation to normal walking. I imagine the hip joint rolling around in the socket, and then when the hip moves forward you’re supposed to “drop” the hip in front as you plant your foot on the ground.

8) Heel to toe: Speaking of planting your foot, get a good heel-strike, then roll forward, shifting your weight from the heel to the toe of the foot.

9) Swing your arms: Step with left foot and swing right arm. Step with right foot and swing left arm. Repeat. Yes, I seriously have to think about this. And no, it isn’t looking fabulous yet because my left arm still looks like a chicken wing pinned to my side more often than I had hoped.

10) Know how to fall: Falling is a part of learning how to walk again, so accept it and don’t be scared. I have prepared myself for falling by habitually keeping my tongue on the roof of my mouth so I don’t bite it if I lose my balance, and I will be getting some nice veneers if I knock all my teeth out. At one of my first gymnastics classes as a young’un, we learned how to fall. We lined up on the mat and our teacher would give us a shove from the direction of her choice. Our job was to draw our arms in and roll around on the floor like a ball. Try not to put your arm out if you fall – it might break, or get otherwise hurt. Also, try to have wall radar – know where the walls are and if you fall, try to break your fall against a wall.

UPDATE August 2018thank you for reading this.  It turns out that there are a lot of mobility seekers out there who land on this page.  WELCOME!  I survived a cataclysmic medical event in 2011.  Gait training will be my way of life.  It’s been almost 7 years since I learned to walk.  I still think of these tips daily.  Here are some additional resources that will be helpful to you.  Happy Walking!

Help Matt walk again at ShreddedGrace.com – click on the magic wand!

This is part of my Shredded Grace: Reaching Higher Series.

You can buy the book here: Learning How Vol. 5 on Amazon – everything is ALWAYS non profit.

Book Description: Welcome to Survivorship 101 If you didn’t die and you’re wondering what to do next, this book is for you. Specifically, it’s for Marlene – because she survived TWICE and there’s still a whole lot of living left to do. I got my friends to help me write this book to prove a point – Recovery is a Team Sport. I survived a Cataclysmic Medical Event in 2011. When the dust settled I looked around me and began my adventures in RecoveryLand. Over the past 7 years I realized that “Learning How” has grown into “Shredded Grace.” FYI, we’re all Surviving SOMETHING. But even if you wouldn’t call yourself a Survivor you know one, or you will. Learning How books are always Non Profit. Learning How to Reach is a Survivor Handbook. This is what’s inside: 1. Introduction – Welcome to the Club 2. Is it Ok that you lived? Decision Day – Ruth 3. There’s No Crying in Baseball – Why walking is SCARY but you should do it Anyway 4. How to Cultivate Survivor GRIT – Matt Hankey 5. The Problem of Pain 6. Best Foot Forward – How to Use a Medical Resume 7. I’ll Fly Away – Mental Health Issues – the Marine 8. The Power of Possibility – A Practitioner Pep Talk – Coach Randy 9. How to Find Help – Trainer David 10. Why Survivors Have Body Image Issues – Jessica Smurfette, RD 11. The Measure of Success – Matt Hankey 12. The Bossy and Sassy Show – How to Choose a Medical ID – Megan 13. We Can Hear You – What to do when Someone You Love is Asleep in the Hospital 14. Champion If you cannot read, please watch the vids on YouTube @shreddedgrace – there’s also a lot of other content online. ShreddedGrace.com @shreddedgrace

135. There’s no crying in baseball!

This is ~30s of one of my first attempts to walk post AVM + stroke.  The lack of self-awareness meant the absence of fear.  Basically, I thought E (1) was nice and I wanted to do anything she said.  I’ll work on an updated gait video after Spring Break.  I am interested to  scrutinize my own form. I’m sure M (37) will help me. 

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

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

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

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

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

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110. If my foot slips…

You can't see the inside of the ring very well, but you can probably make out the "94."

You can’t see the inside of the ring very well, but you can probably make out the “94.”

I actually have two special rings.  I can’t wear either on my hand right now because of my dermatitis (which I hope is clearing up, and don’t worry, it’s not contagious – it just grosses me out – it won’t transfer to you), and also because my fingers are a lot bigger than they used to be.  I used to be a 4.5 or 5 (ring size), but now I’m more like a 6-7.  I will most often wear my rings on a chain around my neck, but sometimes I’ll wear a ring on my hand for a few minutes just to make myself happy while typing or exercising – e.g. Aunty PC just gave me one that I enjoy for the sparkle and the fact that it actually slips on to my finger (it’s larger than my “normal” size).    One of the rings is my walking ring – it’s the one you see in all my pictures, and my major motivational strategy for learning how to walk.  I bought it before I could walk because I was afraid of trying, so I purchased the ring to wear after my first “real” walk.  My walking date (9.21.11) is engraved inside (Thanks, S!).

You’ve never seen the other ring since it’s something I’ve preferred to keep to myself.  It’s pretty plain – I chose a plain band so I could wear it in Africa (when I chose it I still thought I was going to move there).  The inside is engraved with 2 dates: 4.7.11 (the date of my brain bleed) and 7.24.11 (the day the Lord answered all my questions).  There is also a verse:  Psalm 94.18-19.  It’s one of the verses I used to carry around on an index card in my back pocket at work, but that I remembered in my dreams in the hospital, and that I have found a more literal application for now.  I’m sharing it because the verse M shared with me on Friday made me think of it.  I so appreciated the verse, and I also loved the fact that M borrowed a word from Aunty PL!

Psalm 94.18-19
If I say, “My foot slips,”  Your mercy, O Lord, will hold me up.  In the multitude of my anxieties within me, your comforts delight my soul.  (NKJV)

p.s. Thank you so much for praying for Peter.   He slept most of the day on Saturday and was perkier on Sunday.  I think we were all happy to see him more alert, although still coughing pathetically.

108. “Don’t be a crybaby today, okay?”

Ed came to Therapy to boss PT37 around.  "Psst!  The answer is 'C.'"

Ed came to Therapy to boss PT37 around.
“Psst! The answer is ‘C.'”

Ed said this to me the morning after I fell in public for the first time.  We had gone to a favorite restaurant for lunch, and since we were on our way home from PA, I needed to visit the little girl’s room.  The restaurant is small and narrow, and the patrons saw me thumping down the aisle with my cane and did their best to minimize the space they were occupying so I could pass by.

I appreciated their efforts, but they turned out to be inconsequential.  I was making my way to the back when I lost my balance and knocked against the tables where I set bento boxes and cups of green tea swaying.  Thankfully, nothing was overturned except my pride, and Mom and Dad swept me into the back of the restaurant where I could hide behind a little curtain.

I’m embarrassed, I told Mom in my high school French.  I was so upset by the incident I couldn’t talk about it in English.  Mom sympathized with me but also informed me that we were going to go back out to the dining room, rejoin Dad, and have a nice lunch.  And that’s exactly what we did.

When we got home, however, I immediately took to my bed and cried my eyes out.  Such indulgence was offensive to Ed, however, so he sent me off to face the world on the following morning by saying, “Don’t be a crybaby today, okay?”

“Yeah, no.”

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I have seen some super-cute wheelchairs/assistive devices since I started going to Planet Rehab (NRH).  The list includes a dusty lilac rollator, a red chair, as well as a lime one.  I wouldn’t invest in a cute chair/device unless I was going to use it for a long time, so for now I just look at other people’s and smile.  I found Leo by typing “leopard print cane” into the Amazon search engine (I love Amazon!) but I will not be purchasing any cool accessories like the tripod-like base on Uncle B(C)’s cane, that he let me test-drive a while back, since my goal is to walk without the cane.

There is a hallway next to the sugar/cream coffee station at Planet Rehab where a fleet of utilitarian wheelchairs are parked.  These chairs were built for industrial use, not to compete in a beauty pageant.  Still, the big metal “hoops” on top (they make it easy to identify a hospital chair and prevent anyone from folding it up and taking it home in their trunk), don’t deter me from wanting to take one for a joy ride.  FYI it’s the safety and independence that makes me miss my wheelchair, not the limitations of being in a chair that people I know bear with such good grace.

Last week I was working next to the parallel bars so I could see myself in the mirror and I paused to watch a patient get out of her chair so she could walk within the bars.  My eyes were not fixed on her, but on the chair she had vacated.  “Chair envy,” I sighed.

But PT37 does not entertain my fondness for anything even vaguely related to dependence on something other than my own two feet for walking.  She just said, ” Yeah, no.”  And we kept on practicing.