150. Back to “Normal”

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