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

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

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

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.

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.

Gong Xi Fa Cai

Happy Chinese New Year!

Ed wants to make sure you know it’s the year of the HORSE.

Ed had SO much fun…

…at his party last week, Ernie sent me a picture of him recovering on the sofa with his pumpkin pals.

It’s a hard knock life, ain’t it?

168. Matcha Green Tea Latte

This was my tea time snack.  Can you tell I took a huge bite out of the bread in the background?  That’s right – real bread (white whole wheat) and real butter.  Hog wild, people.  Hog wild.

I ❤ matcha.  I’ve liked the amped up green tea taste for a long time, but my subconscious has kept on coming back to it since I saw a couple of recipes at Angie and James Do Stuff (I love the name of the blog.)  Specifically, the Goji Berry Matcha Cake (hello, super foods!) caught my eye, and then the Matcha Mushipan sent me over the edge and had me researching non-flour steamed bread options for a few hours.  Answer:  using rice flour yields a much different product – I think there’s a specific name for it, but I can’t remember.  Lots of Asian cultures make steamed bread-cake, and one thing I read was like, The Chinese have been making this stuff for a long time.  And if there was a gluten-free option they would’ve figured it out already.  (Sigh – all my hopes and dreams were crushed.)

Seriously, if you didn’t look at either of the recipes above, at least click on the Matcha Mushipan.  She steamed them in adorable silicon liners shaped as stars and hearts.  SO cute.  I’m not into lifting pics, so I’m telling you to go look for yourself.  Shoot for the stars, people, and fire up that steamer!!  (Even if you aren’t Asian.)  The idea of steamed bread-cake is a part of the landscape of my youth.  If it isn’t part of yours, it should be.

And the matcha flavor?  Love it.  Perhaps you’ve had green tea ice cream at a Japanese restaurant, or a green tea latte at Starbucks, so you recognize the taste.  Green tea is good for you,  but matcha, a fine powder form of green tea, allows you to consume the whole leaf and reap the maximum benefits.  Here’s a quote: ” Like other types of green tea, matcha not only speeds up your metabolism, but is chockfull of antioxidants and other powerful superfood properties such as aiding stress reduction, lowering cholesterol, boosting brain health and fighting cancer.”  (DrOz.com)

Matcha is becoming my drink of choice so here’s a simple Matcha Latte for you.  The hard part about this is purchasing matcha.  I got mine from Amazon, but you can try shopping around at Asian markets, go to Ten Ren etc.

Matcha Green Tea Latte
serves 1

3/4-1 cup milk of choice

1/2 tsp matcha

sweetener (optional)

Dissolve the matcha at the bottom of your cup/mug with hot water.  Fill with your milk of choice.  Microwave for about 1.5 minutes – 2 minutes (depending on how strong your microwave is) – just watch it so it doesn’t boil over.  Stir vigorously.  I love vanilla almond or soy milk – if using an unsweetened milk alternative you might like some sweetener to taste, e.g. stevia, honey or agave.  If using regular soy or almond, I doubt you’d need the sweetener.  Not sure about regular milk bc I don’t drink regular milk.  But really, it’s up to you.  Remember, green tea and matcha are NOT caffeine-free, so if you are avoiding caffeine, don’t drink this.  If you’re okay with caffeine, definitely drink this.

PS.  Happy Friday!  Here is another inspirational “therapy” picture for you:  Buzz spotted Ed while he was doing his core strengthening exercises.

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).

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

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:

108.  Don’t be a crybaby today, okay?

147. Ed’s Career Advice: 3 Tips for Professional Success

You can take the girl out of corporate America…

Ed has been eagerly awaiting the opportunity to model some of the birthday presents he received from friends and loved ones.  That’s right, people – some of you actually sent him stuff (thank you xoxoxxo) – I didn’t go and buy these things myself, although I have thought about it.

Finding a job was a hugely stressful component of Business School.  Here are some of the things I learned there and in the working/rehab world.

(1) Keep your resume updated.  Even if you’re not in the job market, the bullet points you come up with will be a huge help at performance review time.  Also, if you force yourself to distill your job into a few bullet points you’ll figure out what you’re really spending your time on which will help you decide whether you’re devoting yourself to the right things.  (I googled “resume writing” – and ale.org popped up with this handy word list.)

(2) Dress for success.  When I worked for a corporate real estate company in D.C. I knew a young broker who showed warehouse space in Annandale wearing wearing meticulously ironed shirts with cufflinks.  Looking respectable and “together” inspires confidence.

Ed is a retired banker.  Banking was more of a gentlemanly pursuit than a profession since he is independently wealthy, but that’s neither here nor there.  He got this new tie as a gift.  Don’t you like the stripes?  And then he was THRILLED to receive the chef’s outfit since it helps him look the part of his true calling:  being the Next Food Network Star.

(3)  Do unto others as you would have them do unto you.  I have bean treated by many medical professionals during my adventures in RecoveryLand.  I’ve also interacted with many customer service/administrative professionals (e.g. from the credit card company, the DMV) when my parents let me (sometimes they don’t because they want to shield me from stress or are afraid of what I might say – this latter reason was more of a problem when I refused to think anything happening was real).  Out of the army of people I’ve met, I’ve only encountered a couple of folks I wasn’t a huge fan of.  I think this is a pretty good track record.  But even 1 or 2 people is 1 or 2 too many.  I have enough reasons to feel bad or unsure about myself – I don’t need anyone else to make me feel stupid (even if unintentionally).  I honestly don’t think I’m over-sensitive, but even if I were I’ve heard other disabled/brain injury patients talk about similar incidents that left them reeling.  So I’m not the only one this happens to.  I am the only one in my family who deals with situations like these, and I am careful about if/how/when I talk about things like this that hurt my feelings since my family members do NOT tolerate even a hint of ill or sub-par treatment of one of their own, and the air around my house is generally litigious (be forewarned).

So whether or not your job requires you to interact with disabled people, the rule of thumb is simple:  Do unto others…  C’mon – show us that your parents raised you right and that you know how to treat other people with respect and kindness.  It’s quite possible that you did not have the opportunity to see this sort of good behavior modeled for you as a child, so show us you know what the right thing to do is anyway because you picked it up on your own.

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30. My New Cohort

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

This is a pic of I posted on FB this week. (We’re at lunch after PT.) My “Memoirs” do exist, I promise.

Have you noticed the milestone counter in the sidebar of my blog? It counts the days until Ed’s Birthday (the 2^nd Anniversary of my injury). Sigh. 2 years ago (right before I got sick) I think I was still in Maryland (I had just returned from Africa). I telecommuted for a week and then flew to Portland. I think that probably added to the shock factor of my bleed – many people had just seen me happily bouncing around the metro area and then all of a sudden they got an email/text/phone call saying that I was sick.

It’s hard for me not to be a little blue this time of year. This sadness took the form of high blood pressure last year, and an increase in tummy aches for poor Ed this year. Ed has also recently developed a food allergy (to marshmallows). This is difficult for him since he enjoys building bonfires in the backyard and making s’mores. But he, being a resourceful horse and an excellent chef, is researching marshmallow workarounds. I am sure he will have perfected a recipe by the time it’s his birthday.

Meanwhile, I’m busy trying to encourage myself in the Lord. That phrase always fascinated me in I Samuel. The instance I have in mind is when the people were about to stone David but he “encouraged himself in the Lord his God” (I Sam 30.6). To me the phrase has always suggested a good amount of intentionality on David’s part. I figure if I’m having a pretty rough time of it I have to plan to be encouraged by what I read, watch, think about, etc. – I shouldn’t just slog through the day, hoping to be surprised by encouragement. (Side note: sometimes these surprises do happen – I’m just saying that I don’t bank on them.)

One of the hardest parts of my situation is learning how to go with “Plan C” even though I don’t know what the end goal looks like. Let me spell it out for you: Plan A was Africa. Plan B was the “American Dream.” Plan C is this.

No one ever dreams of this. Wait, I take that back – some people do dream of walking. I know I used to. I had one really good dream when I was still at RIO (3^rd Hospital) – I dreamed that I could use a walker and was free to walk over to the bathroom whenever I wanted.

So I should clarify and say that since I learned to walk (albeit uglily) I never dreamed of living like this. A couple of days ago I cried as we left acupuncture and I stared down the long ramp, thinking it was a metaphor for the longness and sameness of my situation. “Mommy,” I said, “When I daydream about what my life is going to be like I imagine myself as able-bodied, but I don’t think that’s going to happen.” |Sniff, Sniff|

Well, actually, I guess it depends on the definition of “able-bodied” and we’re going to have to wait and see the degree of recovery the Lord grants me. In the spirit of encouraging myself I’ve been thinking of something I wrote in December:

As I told my neurologist last week, I thought I knew what my adulthood was going to look like but it turns out I was completely wrong. But as I told a friend yesterday, I thought I knew what I wanted, but God’s made it clear that He’s not going to give me those things. This is okay, though since I’m confident He’s going to give me not what I thought I wanted, but what I was made for….

Also, here’s an excerpt from Learning How to Wait – the 2^nd part of my “Memoirs” in which I talk about Ed’s 2012 Birthday Bash. The invitations I sent to my siblings had “Be there or be square” scrawled across the top. I’m sharing it since the 5-Minute Rule helps in many stressful environments.

As I thought about everything I missed about my old life, I just wanted to pull the covers over my head and cry. Soon after we came home I had told Mom that I had considered holding my breath until this was all over, but didn’t think that was going to work since I had read somewhere that if you held your breath too long your body would automatically knock you out and start breathing again as a self-defense mechanism. She agreed, that it wasn’t going to work. What I decided to do, then, was to resurrect the 5-minute Rule. The 5-minute Rule had been helpful to me a few years before when I was stressing myself out at work, so I knew it would help again. It’s really quite simple – sometimes surviving the next hour can seem overly daunting, but a five-minute increment of time is only a very short while that you need to keep on breathing. So I took the time in 5-minute increments, and did pretty well.

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74. Home

116. Move faster…try harder!

Ed, Charles, and my stopwatch.

This was a phrase Ed used on me during the time I was rolling Charles, my Rice Baby down the hall, and I indulged myself by letting Ed ride on the hood. I found that if I squeezed my core and just kept one foot moving in front of the other I could walk much faster than I was wont. My big stopwatch indicated that my walking speed increased fourfold within about a week. Sadly, my leg issues soon put a stop to my efforts to move faster and try harder.

When I was still trying to hustle around the house and exercise despite my body’s protests it occurred to me one day that since I know the Lord, physical impossibility is irrelevant. I then proceeded to work out on my exercise equipment at full tilt in the morning, then was supine for the entire afternoon for a couple of days. When I emerged from my slumber on the second day I told Mom, “Okay, I admit it. Maybe I pushed it a little too hard.” She clucked at me and raised her eyebrows in a way that indicated that she knew this all along, and just patted my shoulder and made us tea.

I used to really believe that if I woke up earlier and tried harder I could finish all the things I wanted to do at work. Sometimes it would be like 4.30 in the morning and I’d be in the shower getting ready to go to the office like it was normal. News flash: It wasn’t normal. I finally learned that moving faster and trying harder are good ways to increase your efficiency, but sometimes they just don’t work. My leg problem drove that point home for me. I then remembered that there’s always enough time to do what God wants me to do in any given 24 hours, and for now, that includes resting.

P.S. Do you know what movie the title refers to? Hint: Early 90’s take on an old English tale – “No! I took the bread.”

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79. Warming Up

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

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?”

103. Ed says…”Toughen Up”

I did a dumb thing yesterday.  Actually, I probably did several dumb things yesterday, but the one I’m referring to is how I watched a little of House Hunters last night.  I normally don’t do this since watching HGTV usually makes me sad, but it was slim pickings on the tube and I was drawn in by the pictures of OR.  (The featured couple was from Portland.)  I thought I was boo-hooing in safety, but Tanpo chose that exact moment to wake up from “watching” the PBS News Hour and saw my facial contortions.  I was fine, I assured him, and went to the kitchen, where Mommy was just about to call us to sit down to dinner.  I told her I was fine, too – I was being tough, see.  It’s like the time my Doctor was squeezing my left leg to see where he should put the steroid shot but I chose that time to toughen up, which didn’t help him find the right spot.  “You’re not screaming anymore,” he observed.  Oops.  My bad.

“Toughen up” is Ed’s favorite phrase.  We actually take turns saying it.  In this relationship, only one of us gets to be stable at a time.  It’s usually Ed.  The phrase actually originates with one of my first bosses.  He gave me a ride home one day and I told him I was melting in his convertible (it was a usual hot and humid D.C. summer).  “Toughen up,” he joked, trying to waft some air conditioning my way.

When I came back from Africa, I showed my caregroup a picture of us having lunch outside, and I’m wearing a crazy sun hat.  I told them that I had actually packed a multiplicity of headgear which I’m sure begged the question, “How much stuff could one girl bring to Africa?”   The princess and the pea were not used to having to toughen up.  When I spied a U.S.-style power strip in the J’s family room I took the opportunity to plug in my electric toothbrush.  I fondly hoped my hosts wouldn’t notice.

These days I’ve been a little chagrinned that the things that I wear on my legs are multiplying.  I favor low cut socks so I usually wear a legwarmer if I’m wearing my aircast.  Now I wear a legwarmer on each leg since I’ve added weights to the routine and I don’t like the brace or the weights rubbing against my skin.  When we went to PA to see Peter I devoted a whole drawer to my leg accouterments.  I’m trying to minimize in general – e.g. what I need to bring with me everywhere, but apparently I’m not doing a great job at it.

Oh, well.  Like the J family, most people are too well bred to say anything anyway.

p.s. Congratulations, J!  My parents and I couldn’t be more pleased that you’re starting a new adventure.

p.p.s. Have you seen my LHTW video?  The audio is from the last Sunday Morning I spent there.  You can see the sun hat I reference above.