My Nemesis (1 of 2)


This is one of my home exercises for VT.  It drives me nuts, but I do it anyway because it will help me with a functional activity – one that I want to be able to do as much as read the written word.  I want to read music.  What you do is that you “jump” from one chart to the other, trying to keep your place while landing on a specific letter, e.g. for the first line you go from “O” on Chart 1 to “E” on Chart 2.  Then F-H, N-C, etc.  There are all sorts of different letter/movement patterns you can do.  One week at VT I did like, 4.  They’ve settled on this one for now, though, which is good since I’m still trying to master it.  My right eye is getting better at chart jumps, but the left eye still does this crazy “searching” thing when moving between charts.  Grrr.  I get mad, like when the very robust Commodore patronizes me when I score poorly on my VT games and tells me I’m a “hard worker.”  The difference is, though, that my annoyance doesn’t seem to help my concentration on the task at hand.  The overshooting and searching eye movements still foil my exercise.  :/

Anyway, I’m going to keep at it since this is going to help me read music, and I’ll need to be able to do that reasonably soon since I’ve asked to be added to the piano roster at church.  I’m on for April – S will be on the organ and ProfJ is helping me with some logistics.  My piano playing assumes that I can get into/out of the bench fine, I won’t fall off, and the congregation will be okay with a few (potentially a lot) of wrong notes.  My plan is to just keep the beat going and try to aim for notes in the same family as the “real” one.  Yeah.  Good plan, that.  Notably, that was my piano strategy before I got sick, too.  I have largely played by ear until now, but lack the skill to just sit down and play anything – so I need visual cues to help keep me on track.  The problem is that I often lose my place when moving between stanzas, or even mid-stanza, since I need to look at my hands more, now.  I learned that the hard way when I played at the Christmas Tea.  But I know a few more tricks to keep myself on track now, though, so we’ll see how it goes.

This is a big deal for me since finding out that I couldn’t play the piano anymore was an even more crushing realization than understanding I couldn’t walk.  This was my first attempt at playing.  Do you know what song I’m trying for?  Hint:  Chris Tomlin.  You can see that although it clearly was not going well, I doggedly stuck to it, hoping it would get better.  It didn’t.  But my playing has improved over time – it just took longer than I wanted it to.

89. Reading Test


During their last visit, Joshie came down the stairs one night with a book under his arm. “I’m going to give you a reading test,” he announced. We seated ourselves at the kitchen counter and he monitored my progress through one of the Scaredy Squirrel books. I practiced using my eyes and my voice as I read through the chronicle of how Scaredy Squirrel eventually decides to get a good night’s rest even though he’s initially afraid of the dark. After every page, Joshie would tell me if my reading had been up to par – I passed the test.

I’m used to tests now. Almost every visit to the doctor requires some strength and vision testing and my therapists do evaluations at regular intervals. When I was an inpatient and wasn’t used to the strength testing yet I used to think, oh yeah – this is the part when he’s going to push me around. Basically, you sit or stand and the therapist tries to push you over. It’s really an exercise in obstinacy for me, but I think I’ve progressed since I don’t think PT37 has tried to push me over. She’s too busy being ready to catch me at various intervals during the evaluation.

One day during an evaluation at The Place, PT6 was done pushing me around and then he said, Okay…I just want to see…close your eyes and try to keep your balance. I was standing a foot away from him and I had my arms crossed over my chest. As soon as I closed my eyes I fell (thankfully in his direction). When I actually hit him he propped me up again, I opened my eyes, and he said, “Okay, ‘no.’”

On evaluation days he’d also follow me around while I walked with my walker, looking at his clipboard and saying stuff like, “Take a longer step with that foot…That’s right…heel to toe.” Joshie was not so exacting when he gave me my Reading Test. I think he was just enjoying the story.

It’s actually a big deal for me to be reading to someone. As an inpatient I only had to do Recreational Therapy a handful of times, and I wasn’t an overly enthusiastic participant, FYI. To my longsuffering RT’s – thank you, and I’m sorry if I gave you a hard time. In my defense, I did RT early in my stay at RIO (the 3rd Hospital) so I didn’t think what was happening was real. Then the whole piano playing incident (when I found out that my playing didn’t sound like it used to) soured the whole idea of RT for me, and recreation was never my forte anyway.

Anyway, since the whole thing was a dream, I reasoned, I might as well ask for what I want. I didn’t want to play the piano anymore, I did not want to play the Wii or poke around on the iPad, so I asked if they had any Berenstain Bear books. When I asked K one time and she said, “No,” I asked her again during my next session to make sure. I just wanted someone to read to me, and the Bear Family was a familiar presence from my youth, and I remember one of the teachers at the Discovery School had been reading a BB book to her class when I was in Africa.

So I made doubly sure that there were no Berenstain Bear books to be found in that hospital. The only thing that read to me was my Kindle. But when Joshie brought me that Scaredy Squirrel book a couple weeks ago I was able to read to him. And yesterday my dream came true when my friend R, who came to visit in November, mailed me a Berenstain Bear book for me to enjoy.

66. Enthusiasm

Seriously?  What  is Karine celebrating in this movie?  (If you haven’t watched the clip yet, do it.  Be forewarned – it’s noisy.)  The original version is 2 minutes long (I cropped this to ~40 seconds) but I assure you, she says “Yay” and claps enthusiastically the whole time.  Maybe she was just glad to be at the piano and to be with her cousin.  Joshie and Karine are still quite attached to one another.

This summer when I played sudoku on the iPad with my left hand (“Oooh!  I wanted the 6, not the 7!  There goes my score.)  I used to listen to a mix of kiddie songs Ernie made for Karine when she was a baby.  One of them is called, “So Glad I’m Here.”  It’s very repetitive and I normally have an aversion to repetitive songs, but I tried really hard to like this one and be glad “I’m here.”  It’s better, but it’s still a choice to be made.  But watching videos like this makes the choice easier.

I dare you not to laugh.

I’ve had a nice day of rest but I’m going to go back to Therapy tomorrow because lying in bed is booooring and I’d prefer pretending everything is like it used to be.  FYI this is what things used to look like:

I love Kpop in that video but I have to say it makes me a little sad.  Not weepy or anything, just wistful.  Meanwhile, I’m going to make myself feel better by sharing this pic.  I dare you not to laugh.  Goodnight!


55. Progress

Ai Ai's ganache tartlets from Saturday

Ai Ai’s ganache tartlets from Saturday

My sister had a nervous moment a couple days ago:  she feared that she did not have enough food to serve at Tea on Saturday.  So she did what any normal person would do – she called Baker Smurf.  Mommy recounted the list of things Ai Ai said she had already made for me.  She hadn’t even gotten through half the list and I was like, “Oh yeah, that girl totally has enough food.”  Then Mommy said Ai Ai made curry puffs and I said, “She knows how to make curry puffs?”  Yes, Mommy confirmed, my sister has apparently been making them for years.  I just haven’t been around to enjoy them.  I was deeply impressed by that girl’s skill.  Since if she can do it, maybe there’s hope for me (provided I eventually go back to OT, Le Cordon Bleu for disabled persons).  We have made major progress since the early days of my sister’s marriage when cooking was more of an involved process.  She’s come a long way, and Baker Smurf didn’t raise no fool.  Neither did Mrs. R.  She has completed the “raising” phase of parenthood but since she is geographically near to K she was able to help her out as K prepared to host Tea.  The results were fabulous.

I’ve made some progress, too (although some areas have seen regression lately).  Last Thursday was my Eval day at PT.  Like The Place, Planet Rehab does evaluation testing every 30 days.  In my 6-7 months at The Place I arrived in my wheelchair and walked out on my two feet (with the aid of my rollator).  We did part of the last test (my exit eval) without any assistive device, which was huge for me.  In the middle of the evaluation I was lying on the mat and then asked PT6, “Is this the part where I beat you up?”  No, it wasn’t.  Well, I was just checking to see if anything had changed since last time.

I tried to hand Leo the Cane to PT37 last Thursday but she suggested I leave Leo behind with Mommy instead.  “Are you sure?”  I queried, feeling like Linus being robbed of his blanket.  She was sure and then we did the whole test sans assistive device.  She had to catch me a couple times, but she knows how to do that sort of thing and I’ve been in rehab long enough to know which activities I should warn her might be more “exciting.”  I then went to the pool, which I was nervous about since I got sick last week and my walking went downhill, but everything was fine – I was just pooped after.

In other breaking news I’ve made enough piano progress that I convinced J to let me be the accompanist at Tea at K’s house. (“J, this is the perfect opportunity – the bar is set really low for me.”)  It really is good for me since I’ve been told from the beginning that playing the piano is a fantastic therapeutic activity.  I’m still managing only one note at a time with the left hand (with an occasional octave thrown in) but I try to put enough distraction in with the right hand that hopefully people won’t notice too much.   My practice time has been limited by 1) the length of time I can tolerate sitting on the piano bench (my back gets really sore since getting sick), 2) The fact that I am exhausted by 5.30 pm and must therefore play early in the morning, and 3) my eyes.  I have long “pretended” to play by ear (told you I was a good faker), but I lack the skill to just sit down and play, or to play with my eyes closed, which is what my body really feels like doing.  So I asked Tanpo to print some song sheets for me and I “tabbed” (like on a guitar) my carols then highlighted the lyrics in 3 colors to help me keep my place.  When I’m reading I often can’t make it from one line to the next without mistakenly jumping around, which is very disruptive to my piano playing.  So we’re going to see how it pans out.  Thanks for letting my try, J!  (Update:  it went okay – I’ll write more about it tomorrow.)

I’m going to go take Ed out of his pumpkin suit.  That is a sign of progress, too – it’s now December!  My recovery is no longer the exciting story of me waking up and being able to do lots of things people weren’t sure I’d be able to, now it’s the story of me trying to regain more things I lost.  To quote Tanpo, sometimes it’s like watching grass grow.  Since I’m impatient, watching grass grow is not my favorite activity in the world.  Right now I have some real things to celebrate (e.g. my no-cane testing and my piano attempt) but doing things like dressing Ed in a pumpkin from October to November helps me create reasons to celebrate the mere passage of time.

38. “Look at the way she’s wheeling that thing around!”

Umm…does my playing *really* sound like that?

My parents’ house has nice wide hallways and I am very thankful that they didn’t have to do any renovating to accommodate my wheelchair when I moved back in with them.  The changes they made were temporary, e.g. how Ernie & Ruth moved one of the guest beds downstairs since I couldn’t sleep in my bedroom at first, and how we moved the piano bench somewhere so I could roll myself right up to the keyboard to practice.  Speaking of which, I should go do that.  Mommy has noticed that I haven’t been putting in my practice time lately.  So I’m going to get on that.

Back in the day Mommy also noticed (and commented on) the way I was driving my wheelchair.  Now I had no notion that there were different driving styles, but apparently there are.  I just wanted to get where I was going so I gripped, pushed, and turned those wheels accordingly.   It’s pretty intuitive, btw, although I did need coaching at first.

My parents’ house is pretty accessible, however the thresholds in some doorways are quite high.  For a wheelchair that means the person driving it has to give a big heave – ho to get into that room.  The threshold leading into/out of the kitchen is one of those high ones.  Like many families, we spend a lot of time in the kitchen, so I either needed help to get into the kitchen or I had to give myself a really big push.

We didn’t have to make any renovations to the house (although we planned on calling CEF, one of my wheelchair handlers, if we did), since there was just enough room for my chair to pass through the doorways.  If Mommy was pushing my chair I kept my arms close to my body at all times.  If I was pushing myself I ran the risk of scraping my knuckles.

We were in the kitchen with my sisters one day soon after my homecoming when I excused myself to go do laps in the hallway or something.  Mom told me to be careful as I propelled myself out the door.  I backed up from the threshold so I had more momentum-building distance and then gave myself a giant push.  At that point I head Mom say, “Look at the way she’s wheeling that thing around!”  Quick as a flash I let go of the wheels and folded my arms inside the chair and passed safely over the threshold and to the other side.  I then heard my family giggling at the spectacle of my recklessly pragmatic wheelchair technique.

Let’s call it “determination” instead of recklessness.  I like that interpretation.  I just wanted to go where I was fixin’ to go in my mind and I didn’t think about what I looked like to other people (hence all the early lectures on proper wheelchair and walker usage).

Apparently how you look when you do things does matter because someone’s pretty much always watching.  I once overheard a conversation at The Place when I was still bashing around in my chair – someone was observing how I was using my legs to propel myself and opined out loud that I’d walk soon.  It wasn’t exactly “soon” by my definition of the term, but it happened.

So now I think more about how I do things.  I liked the fact that I could make my family laugh by simply pushing myself out of the kitchen, and that the way I did it held some sort of vaguely positive connotation.  Perhaps I should apply myself to practicing the piano with the same sort of vigor.