Originally posted December 2012
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!
By the time I posted Rejoice! A Final Word from Dan Uncle I had been practicing for a week and my body felt it. My back was acting up and my forearms were feeling the extra use. Not only was I practicing the medley for my video, but I was practicing my song list in case I had the opportunity to play at his funeral.
I played at several weddings in my Old Life, and some brides actually had me play them down the aisle. Not kidding. My theory is that my friends are often going for a sound that is familiar, and they were used to my sound and liked it well enough to ask me to play. Also, Y’all not picky, which helps.
306. A New Song – Descant
I used to play at funerals, too, and had played one funeral (just Amazing Grace) post AVM. This time I was not slotted to play but I got to fill in for my friend S, an immensely gifted musician, who needed to travel for work. It worked out perfectly bc I played the prelude. Historically I have camped out in accompanist territory instead of performance art land, but now that I have physical deficits its easiest to play by ear without reference to keeping time with a congregation or choosing a key in a suitable vocal range. I started to learn to play by ear when I moved to Oregon and did it 50%+ of the time when I got sick. Now I play by ear 99% of the time (whenever I can).
Here is a fascinating look at how my new sound has developed:
Before: 3 mo. after injury, July 2011
15 seconds
Watch the left hand – although the right’s not great, either. FYI, this was supposed to be Tim Hughes’ “Here I am to Worship.”
(Daddy followed me around with his iPad all the time. He still does sometimes.)
My first day at home – June 2011
After Mommy made me practice: 3.5+ years after injury, Nov 2014
3 Minutes: Silent Night, Away in a Manger (Non American Version), Holy Holy Holy, a little O Come, O Come Emmanuel
I’m content with my sound and music is an enjoyable and useful gift again. Plus bc of my deficits I am free from the tyranny of sheet music. But you can tell at the end in this song I was really hurting so I cut my losses before anything got worse – but I know how to manage it now…
Yes, that’s me – I’m hanging out with Candy Dog. Click for the video
The Prelude, while very imperfect, was enjoyable to me. It was such a gift to be able to participate and honor Dan Uncle in this way. It was also a very physically significant milestone. I made it for 26 minutes on the bench. That morning I had been hurting alarmingly and had resorted to the Ceragem bed prior to the service, hoping to just make it through. It turns out that adrenaline carried me through and I had enough juice in me to keep on playing for a longer period than I had been planning on, and also enough awareness to gauge my environment while keeping the music going so I didn’t freak out when people suddenly appeared within my peripheral field of vision, and to make a reasonably tuneful ending when informed that it was time to start the service. People told me they walked in and were looking for me for a while, and then realized I was behind the piano! If you didn’t know me you probably wouldn’t be able to tell anything had happened. But I guess they figured it out when they saw me riding around in my wheelchair later.
Overall, it was great. Sad, but good. I was so happy to see Aunty K again (Dan Uncle’s wife). One evening at the chapel I was hiding out in the nursery when M (their daughter) came in. Where’s the baby? I queried. Upstairs with Mom, she answered.
Your Mom is UPSTAIRS?!? (I thought she had stayed home.)
M nodded affirmatively.
Then WHY am I DOWN HERE?!?! I grabbed Leo and made my way upstairs.
Notably, I was hurting SO badly (hips and shoulders) for the week+ prior to the funeral. But the day after the service was over I had zero pain. I was just so relieved. I realized that it was a big deal that I didn’t get to say goodbye when they moved to California while I was traveling. My friends have told me stories about how they stopped by the house to visit and Dan Uncle prayed for them. Sniff. I explained to Aunty K that night as we sat together at the chapel how I had been going downhill physically but the pain had disappeared: I was waiting for you.
(Double Sniff.)
Predictably, the pain came back (less intensely) after I remembered that Aunty K was going back to California. Boooo.
So that’s where we are now – learning how to manage the ramifications of living in imperfect bodies. But as sad as it is to face the changes that come with saying goodbye, I am so thankful that God gave the gift of music back to me.
PS. Here’s a quote from December 2012:
Playing the piano does not make me feel better, hence Mommy’s insistence that I practice. It has improved but the sound is still too different from what I hear in my head for me to enjoy. Exercising was my other form of enjoyment but now it’s my job, not an enjoyable pursuit. It’s also hampered by my impairments, which isn’t fun for me.
58. Goodbye, Shirt!
PPS. I take it back. Exercising is now enjoyable, too :).
Originally posted 12.18.12 – This video only gets funnier with time.
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’m not feeling that great. This is the latest manifestation of the “not-feeling-wellness” that has been following me around for a couple of months. But I hope I’ll sleep it off and be well enough to resume acupuncture and my exercise regimen tomorrow. Meanwhile, here’s one of my favorite videos: The beginning is one of my first piano attempts. That is my long-suffering recreational therapist holding my left arm. And then the obstacle course is at Planet Rehab. The sneakers belong to M37, and the male shoes belong to R, her brother, who was visiting that day. Intern A took the pics!
PS. Is it really going to snow again?
JLSS made this dove – pretty, right?
Click to hear the song.
The project that didn’t work out is a Christmas carol album…actually they are piano medleys of Christmas carols and year-round hymns. One of my big takeaways from this whole experience is that y’all not picky. Thanks. When I play the piano publicly I think the congregation is just relieved that I haven’t fallen off the bench. Actually, I’m probably the one who’s relieved that I haven’t fallen off the bench. Music-wise, though, I’ve found that people are generous listeners, and since a couple of friends requested an album after I posted a couple of slideshows I’ve been wanting to do this for a while.
Besides technical difficulties, I spun out after 4 songs – 8 if you consider that each track includes two. I’ve been practicing hard but I wasn’t feeling great last week and “Oh Holy Night” broke me. Booo. It really is a beautiful song, but I haven’t felt this frustrated over the piano in a long time. This is part of the novelty of this project, and why anyone would be willing to listen: To review, the piano situation was originally very bleak. I burst into tears after I saw one of my first attempts on video and remembered how horrifying that moment was. I had no idea that the music coming out of my fingertips would bear zero resemblance to the soundtrack constantly playing in my mind. Here’s a refresher for you – the video starts with an early attempt, (You can see my PEG sticking out of my shirt.) and then it morphs into more recent recovery scenes and a medley of “Man of Sorrows,” “He Leadeth Me,” and “Immanuel’s Land.”
Click to watch/hear “I’m taking requests” on YouTube
I prepared for this in a few ways: Mr. R came to tune our piano, I listened to carols online, and I played a game my piano teacher used – you incentivize yourself by putting pennies on the piano lid to help you focus. Each time you play a song well you get a penny. Except this time I played with licorice gummies from Aruba. I’ve eaten a lot of licorice but have no new tracks to show for it bc I bent the rules. I usually play by ear in C major rather than trying to look at music. I have always played relatively simply. It’s even simpler now and sometimes you can hear my brain flopping around while I think of what to do next. But in light of how bad things used to be, I’m thankful that I’m able to do this much.
My preparation strategy did not end in a complete album. Both my shoulders began to hurt – the left one because it’s problematic in general, and the right one bc that’s what happens when I use a keyboard (computer or piano) too much. It could also be because of Trainer D. Side note: Good one, Mr. Miyagi. When I try this again I’ll have my fancy electric piano back from OR so I can use it to record (if I can figure that out) and I won’t have to worry about Mommy washing dishes or Tanpo walking by and making chirruping kissing noises. (That is how Tans greet each other – smooching sounds or the Tan Family Whistle.) Mommy has told him to shhhhhh but he can’t contain himself. We are a loving bunch.
Even though this is just one song (or two), I hope you enjoy it. I enjoyed playing it. God is giving me the gift of music back. Actually, this is the second time He’s given me a new song. The first time was during the Crazy Days when I despaired of ever being happy or useful again. He put a song in my heart (seriously – a specific old-school rollicking hymn I used to whistle in the parking garage stairwell) and the confidence to pursue a new life. So based on prior experience I was sure He would do it again.
If you recall, one thing that I have requested prayer for is that I cannot sing. I’m not talking about doing a solo at a wedding or anything, I’m just talking about congregational singing. I have always enjoyed the voices of my friends who are gifted vocalists, though, and now more than ever I live vicariously through them. The first song on the album is “Unto the Hills” | “Come Thou Long Expected Jesus”. The verse, “I lift my eyes unto the hills, where does my help come from?” was one of the first verses Daddy chose in his initial emails about me. I chose the second (Christmas) song “Come Thou Long Expected Jesus,” because it essentially answers the question.
Q: I lift my eyes unto the hills – where does my help come from?
A: The Maker of heaven and earth sent His son to help us. And the Son, being one with the Father, came willingly and was lifted up – On a hill far away, stood an old rugged cross…
“Unto the Hills” is not in wide usage in the circle I grew up in, but the few times I heard it as a teen I was struck by its beauty. I was shocked, however, upon learning to play it, that what I had assumed was the melody is actually the descant. A “descant” is an “independent treble melody usually sung or played above a basic melody” (Google). It’s all M’s fault, really. She lived in our area at the time, and I got used to hearing her strong, clear voice sing the descant that it WAS the melody for me. It still is, actually. I have trouble separating the melody from the descant – so I stopped fighting it and just played it like I learned it.
The new song God gave me is like a descant. It’s not the melody most people sing and most listeners enjoy. But it’s beautiful in its own right. And although I can’t sing, I write in order to develop a clear, strong voice to show it off.
Psalm 40
1. I waited patiently for the Lord; And He inclined to me, And heard my cry.
2. He also brought me up out of a horrible pit, Out of the miry clay, And set my feet upon a rock, And established my steps.
3. He has put a new song in my mouth— Praise to our God; Many will see it and fear, And will trust in the Lord.
The entire family came to see us this past weekend. Everyone is home already so I put some pictures together to console myself. I also played a version of Chris Tomlin’s “How Great is Our God” – the ubiquitous praise song that was on my mind when I woke up. (Side note: “How Great is Our God” is owned by sixsteps/Sparrow Records. It’s not mine – I just couldn’t get it out of my head when I woke up.) I spent a week hotly anticipating the moment when I could get near a piano. Being unable to walk was not a huge mental leap for me since if I was not in bed I was in a wheelchair, but hearing myself play for the first time was truly devastating. That’s why I was so sad when Mommy told me to stop avoiding the piano and practice more. (She gave me a pink pig timer, “Fred,” to assist me in this regard.) So I played a version to go along with the pictures so you can see/hear the progress. I also trimmed a clip of my hospital attempt of “How Great…” – it goes on for a long time since I doggedly pecked at the keyboard, expecting good things to happen, but they didn’t. And since I can’t bear to watch me try for so long, I won’t make you do it, either.
PS. If you’re a subscriber (thank you!) and you’re reading this via email you might have to click through to the main site to see the videos. :).
You probably can’t tell, but my nails are teal. Teal is the color of ovarian cancer and PCOS awareness, among other things. I think burgundy is the AVM awareness color, but I like teal better.
You know how people say, you never forget how to ride a bike? Well, I forgot. I heard that phrase on the radio last week and was super sad. Actually, I do remember what it feels like to ride a bike, but I think it’s pretty likely that I would not be able to now, and am too scared to try. I have researched adult tricycle options, but think it safer to just stick with Weezy, my stationary recumbent bike from Amazon that I love.
Actually, things that I don’t do often (or at all) are easy for me to recall – e.g. I remember what it feels like when the wind blows on your face when you run, what the view from behind the steering wheel looks like in a car, and the sensation of tenuous balance that accompanies standing on your hands. But I don’t remember what I do commonly – e.g. what it looks like to “see” normally, and what it feels like to walk with a smooth and easy gait. The first time M (37) practiced jogging with me (I wore a harness) my eyes fogged up later in the day as I recalled the sensation of my feet hitting the ground hard – I hadn’t felt it for so long, and it was the pounding of progress.
So when I returned to the piano at the chapel on Sunday I remembered what I felt like to accompany the congregation and although I was a bit nervous, it felt natural and my stomach wasn’t in knots like it could have been. After all, time has stood still for me in my head. I was writing the date recently, and I wrote X.X.11. Yes, I seriously still think it’s 2011. If I get back in touch with an old friend I often ask them to pretend with me that nothing of import has happened in my life and we’re just going to pick up where we left off. It’s not because I’m in denial, I assure them – it’s because I seriously forget that a lot has happened and it’s just easier this way for me. I check to see if they’ve had any new kids in the last couple of years (there was only one so far – A had another girl. I was SO happy!), and then we’re off!
The difference this time was mainly in the preparation. I roped ProfJ and my parents into making copies of the music for me so I could write on them and be saved from having to flip through the books. I then made notations in bold purple marker. They were mostly chords and also some squiggles/numbers indicating if and when I needed to pick my left hand up. I also told myself to pay attention to what stanza we were on so I wouldn’t lose my place mid-song. Happily, most of the day’s selections allowed me to park my left hand in one place and reach all the necessary notes from there, but in case I needed to shift positions I tried to give myself plenty of notice via my purple marks. Even though I minimized my left hand’s movement I did notice that the tremor was getting jumpier as time progressed, so I was so happy I was playing with S since the organ allows for some distraction from the piano, and I was also relieved when the time for singing was done and I got to sit down.
Even just a few minutes of sitting on the bench was enough to tire me out, so I was eager to rest in a seat with a back I could lean against. I’ve tried playing from a variety of chairs, and my kind friends wanted to know if sitting in a chair would make me more comfortable – it probably would, but it would make playing harder. The arms of a wheelchair get in the way, and a regular chair still requires you to lean forward a little awkwardly. So I went for the bench. Also, my eyes were pretty open, although I did catch myself taking some l-o-n-g blinks.
The most abnormal part of the morning was getting off of the piano bench and making it back to my seat in the first row. I seriously felt like I was moving in slo-mo, but then realized it was my normal pace – it just felt a lot slower since I knew I had an audience. Oh well. If that was the hardest part about playing the piano again, I’ll take it!
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This is one of the saddest pictures ever. I drew it on 10.22.11, the night Mommy told me she had noticed I was avoiding the piano and I needed to practice even though I didn’t enjoy it anymore. I scrounged around and found a notebook and pen on my nightstand and I drew myself crying and dragging my little lead heart balloon on the floor. I used to imagine it fluttering in the wind with the string allowing it to hang outside the car as we drove along. I also pictured it hanging off of the treadmill’s railings as I did my duty in between sessions at The Place. This was after God made me okay with the fact that He had put me in a wheel chair instead of sending me to the mission field, but I was still really unhappy about my impairments, the discordant piano-playing being a particularly difficult one for me to stomach.
I’m still unhappy with my impairments but I’ve got a heart full of joy overall – it just took a while for my heart balloon to inflate. It’s bigger than it used to be, and more resilient than I thought it was. I’m returning to the piano bench at church tomorrow and would appreciate your prayers, if you think of it. All along I’ve been assuming that I will be able to make it on and off the bench, and stay on without incident, but this is a pretty big assumption. My motor skills are still jumpy and my eyes are better but it is still a real fight to keep them open while playing. And I need to look at the music and my hands a lot – but switching in-between really increases the chances of my getting Cookie Monster (googly) eyes and losing my place. I need the visual cues, though, because although I can play by ear sometimes (as in “I’m Taking Requests”), I lack the skill to do this on demand and must use some sheet music as a guide to keep me in tune with the organist and so I don’t play too high or too low for people to sing along.
But things have really changed since I drew that picture above. I wrote Ed Goes to DC very quickly – I think it only took two days for me to rig up the pictures (I used internet images for draft 1 and then roped my friends into taking touristy shots of DC for the final version) after my brother gave me that pep talk after I lost my job and suggested that I try writing children’s books. I was like, Okay – Ed would LOVE to be in a book. And the story just came out of me – and of course, the most natural place for Frank to be was at home on the piano.
I haven’t really thought about playing on Sunday – I’ve done this for over 15 years (yes, I’m that old) and I’ve played a handful of times for a group since getting sick, so I really shouldn’t be nervous. But I am (a little)…and I’ll let you know how it goes next week.
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This video is also available at: http://www.youtube.com/watch?v=U7FFJhB0Ick
About a month ago my sister posted a comment suggesting that I do another video of “He Leadeth Me” for public consumption. It took a while but I did. See? I might not always be able to write back, but I appreciate your comments and I read each one. And that’s saying something since reading (and revision) are not my strengths at present. I actually did a little medley – “Man of Sorrows,” “He Leadeth Me,” and “Immanuel’s Land.”
I’ve actually had “Man of Sorrows” playing in my head for a few months now, ever since I saw a video of Joni Eareckson Tada talking about this hymn that changed her life. I can’t find the video now, but you can read/listen to it here. A friend shared this with her (just snuck into Joni’s hospital room one night) soon after she broke her neck. That particular night Joni was grappling with the permanence of her paralysis and the words of this hymn, sung by the sweet voice of her friend, ministered to her heart. This moment didn’t answer all of JET’s questions forever and ever, but this hymn was exactly what she needed to hear at that moment.
I can’t hear that story without wanting to cry my eyes out. Sometimes music is the only thing that can help. I’ve seen it before when I used to bring CDs to Mrs. R at Georgetown. And you can understand why I was so glum when I understood that music had been taken from me as well – and there was no respite to be found at the piano bench. Not that I could sit on a piano bench. I did manage to transfer out of my wheelchair into a regular chair (with arms) that could be scooted up to the piano.
You’ll see one of my early attempts during the first few moments of this video. It goes on for a while longer, but I cut it up. I seriously thought that if I just tried harder and sat there a little longer that “He Leadeth Me” would materialize under my finger tips as I expected it to. Mommy said the saddest moment for her (out of my entire inpatient life) was when she saw me use my right hand to lift my left hand onto the keyboard. I thought the whole experience was sad, but I do have a “saddest” moment that is not piano related that maybe one day I’ll write about, but not yet.
After I try to get my left hand onto the piano my LSRT, K, (Long-Suffering Recreational Therapist) intervenes and holds my arm up for me. The main portion of the video is a slideshow of recovery pictures – A took a bunch for me while M (37) and I worked on a parallel-bar obstacle course. After that we did floor transfers and lumpy walking. That’s my term (lumpy walking) for how M got R (her brother, who was visiting) and A to help spread out ankle weights under mats and then I had to walk on top of them. I was all kinds of sweaty just when we were in the parallel bars, but we did lots of stuff after, too! Recovery is hard work – don’t let anyone tell ya different.
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This video and the picture below really speak for themselves. I really can’t add anything – but congratulations on finishing another work week!
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!
Learning How... 