Posts Tagged ‘Music’

Butt on Bench

Friday, January 18th, 2013

(This title will make sense to you in a little while, I promise!)

Today I read this great post over at The Seated View. Lene writes about her goal of writing a book, and how to balance that goal with the realities of chronic pain. One of the goals I’ve set for myself this year is to write more, so this post came at just the right time for me.

About a decade ago, I read the book “The Artist’s Way” by Julia Cameron. The author talks about the practice of writing “morning pages” – three pages a day of free, uncensored writing done longhand first thing in the morning, a pure spill of thought/emotion onto the page. (Lene refers to a similar practice described in “Writing Down the Bones” by Natalie Goldberg, another book I’ve read.) This was before I had RA, so I was able to do the morning pages with no issues. A few years ago, I revisited “The Artist’s Way” and tried to do the morning pages, but found that there was just no way my stiff wrists would let me write three longhand pages first thing in the morning. The author was very clear on the importance of writing longhand, pen on paper, to activate the creative flow. So I wrote to her and asked if she had any thoughts on how to adapt this exercise for someone with a disability. I never got an answer.

Lene writes, “So what’s a writer with chronic pain to do? You mess with the rules to find a way that works for you.” And she’s right. I think this is something I haven’t always been willing or able to do. But I’m working on it now. When I set my writing goal at the beginning of January, I made a list for myself of different types of writing tasks and different ways to do them. This gives me options on days when I’m not doing as well, so at least I can do SOMETHING every day.

Lene also talks about the Dorothy Parker quote: “Writing is the art of applying ass to seat.” Which brings me to one of my other goals:



The pianist’s version of Ass to Seat – what I like to call “Butt on Bench.”

Operation Butt on Bench has been going on for several months now. Before that, I was engaging in all-or-nothing thinking about my practice. I used to practice for at least three hours a day, and that hasn’t been possible for a long time – so I stopped practicing at all. For a professional musician, this isn’t acceptable.

So now my butt is on the bench every day, for ten-minute blocks. If it’s a bad day, I only do one block. Even on a good day, I take it easy – I am focused on building stamina slowly and carefully. What I do when my butt is on the bench also varies. For the first block of the day, and whenever I am having a bad day, I practice in exteme slow-motion. (This is good for the brain and the body, anyway – slow practice is highly recommended by a lot of musicians.) On a really bad day, I might study a score, watch YouTube videos of other pianists, or listen to recordings instead of playing. The point is to spend time being a musician every single day, for at least a little while.

It takes discipline for me to do this. It actually takes two different, opposing kinds of discipline. The first is the discipline of getting my butt on the bench when I don’t feel like it. The second is the discipline of getting my butt OFF the bench so I don’t injure myself or get into a flare. Both of these things are a real struggle for me.

Anyway, I’m grateful to Lene for sharing her thoughts. And I can’t wait to read the book that I KNOW she’ll finish.

The Stress of Wellness

Thursday, March 22nd, 2012

A strange topic, I know.

I was doing very well for the past several months. It was starting to look very much like remission. I was able to go out and have fun with friends, to enjoy playing with my son, to go for long walks. I was even able to get back to Irish dancing, something I had to give up when I first got diagnosed. I experienced bursts of creativity the likes of which I haven’t had in years.

And you know what? It stressed me out.

For years, I’ve been telling myself, “If only I didn’t have RA, I would do this and this and this and this…” So eager was I to get back to “my life” that when I finally hit a point where it looked like I could, I was overwhelmed. So many possibilities! So many choices! So much pressure to seize the day, to make every beautiful pain-free moment count.

I danced, I sang, I played the piano, I fiddled around with my guitar, I jammed with a friend, I contacted old friends, I hosted a game night, I took long walks, I got errands done… And every night I lay awake, unable to relax, riddled with anxiety.

When you have RA, you know that there isn’t a cure. You know that the good times may not last. Sure, some people have remission that lasts for years. Still, even these people can wake up one morning, suddenly unable to move. I know one woman who had a 25-year remission, and the beast still came back. I’ve also seen this theme showing up on a lot of the blogs I read lately – people whose periods of remission, or something like it, have come to an abrupt end.

Anyway, it may be coming to an end now. I’ve been in something strongly resembling a flare for the past two days – low-grade fever, extreme fatigue, trouble walking, a big ganglion cyst on my left wrist. My interstitial cystitis, too, has been miserable after a very long period of quiet. I had to miss dance class tonight, to my heartbreak. I am hoping that this is just a bump in the road, that it will pass and I will get back to the state I’ve been (sort of) enjoying for the past few months. Stress or not, it has been so wonderful just to feel good.

Hard to say if it’s a flare, because there are other things going on – for example, recent lab tests showed that my adrenal insufficiency has returned with a vengeance, and I know that this can sometimes cause symptoms very similar to those of RA. (More on all of that in another post.) Either way, I’m no longer well. Maybe, oddly, this will relieve some of the stress?

Nah, maybe not.

Musical Interlude

Sunday, May 16th, 2010


It’s been awhile since I wrote a new song.  The last few months have been especially rough – flares, low energy from the adrenal problems I’ve been having, exhaustion and discouragement and malaise.  So I figure, why not make something creative out of it? 

I had some trouble coming up with a title for this one.  It was originally called “Flare Song,” because that’s what it’s about.  Right now the working title is “Hit The Ground,” but I’m not sure about this one either.  Suggestions? 

***Update – I have changed the name to “Easy.”  Thanks, Lene!  This was one of the titles tossing around in my head, but when someone else said it, it just clicked in.

This also marks the debut of Little Martin!

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I Don’t Think Anyone’s Ever Called Me A “Sugar Doll” Before!

Tuesday, April 20th, 2010


“The Fabulous Sugar Doll Blogger Award” has been making the rounds, and I’ve been nominated!  A big thank you to WarmSocks and Wren, whose blogs I love and read regularly.

According to the rules of this award, I’m supposed to tell you ten things about me that you don’t know, and then nominate five blogs for the award.  I’m going to stick to fun and/or silly things – it seems to fit the spirit of the award!

1.  I used to be an Irish step dancer – in fact, there’s even a video of me dancing at my wedding on YouTube, huge white gown and all!  (I didn’t post it there, and no, I’m not going to provide a link!)  😉

2.  I am OBSESSED with chocolate!  I’m going to have a chocolate-themed party for my 40th birthday.

3.  I am afraid of balloons!  Ridiculous but true.  I’m always convinced they’re going to pop and freak me out!  Mylar balloons are okay.

 4.  I like to make up ridiculous songs to sing to my little son, my cats, and other random loved ones.  One of my favorites boasts the lyrics, “Small and smelly, yes I am/So I have to take a bath/I don’t wanna take a bath/No, I’d rather be small and smelly!”

5.  I have two cats named after opera characters, Marcello and Musetta.  Bonus points to anyone who can name the opera without looking it up!

6.  Just like Helen at Pens and Needles, when I was a kid, I kept a “spy notebook” and wrote down all kinds of random things I saw people doing.  This led to a lifetime “notebook” habit – I still keep one, but now I call it a “journal” – sounds more adult, no?

7.  I wrote fiction a LOT when I was younger, and wanted to be an “author” from the moment I knew what the word meant.  I somehow drifted out of the habit in my twenties, and am now thinking it’s high time I took it back up again.

8.  My parents were professors, and I used to create “magazines” out of the blank exam blue books they left around.  My brother and I published rival magazines, and got into a huge fight once over slanderous stories we wrote and whether or not they were true.  My mom took out a big black marker and taught us the word “censored.”

9.  I never feel settled in a new home until I have baked TollHouse cookies in it.

10.  I get fiercely competitive when I play games.  My husband loves games, so we play a lot of them.  If I lose, we can’t go to bed until I’ve won a round of SOMETHING.


Now for my nominees.  This is MUCH harder, since there are so many blogs I love!  I’m going to stick to people who don’t yet have the award posted on their blog – but even so, this was a hard choice!

Laurie at A Chronic Dose

Amanda at All Flared Up

RA SB at Confessions of an RA Superbitch

Leslie at Getting Closer to Myself

The Thousand Teeth

Her Diamonds

Friday, April 2nd, 2010

“Her Diamonds” is a song by Rob Thomas, written about his wife’s struggle with an unnamed “lupus-like” autoimmune disease.  I first discovered this song back in July by reading Rheumatoid Arthritis Guy’s blog, and was impressed at how well it captures the essence of a couple living with a disease like this.

So why do I bring it up now?  I’ve been going through a rough time physically, and strangely enough, this song has been following me around.  After a long period of not hearing it anywhere, it suddenly seems to be everywhere, and appears at times when I’m having particular trouble.  I was driving home from a difficult and painful bodywork session when it came on the radio, and I pulled into a parking lot and cried.  Then on another day, I was in the drugstore filling a new prescription, which felt like a defeat since I’ve been trying to reduce meds, and there it was again.

Rheumatoid Arthritis guy writes about it here, and he also includes a video that shows the words to the song if you’d like to read them.  But I want to show you the other video, the “real” one.  To me, it seems to capture perfectly the feeling of being trapped inside a body wracked with pain and fatigue. 

YouTube won’t let me embed it, unfortunately, but here’s the link:

Her Diamonds

The Wakeup Sandwich

Saturday, December 19th, 2009

Porgi amor

Yesterday I accompanied a whole bunch of singers for voice juries.  Juries are basically final exams for music students – each student prepares several pieces, then gets ten minutes to perform in front of the voice faculty while they look intimidating and write things on clipboards.  If you’ve ever auditioned for anything, it’s a lot like an audition – brief but very stressful, and in this case, the student’s grade for the semester is riding on it.  As the pianist, it’s not really stressful for me, except that the singers’ anxiety does tend to rub off.  It’s more a matter of endurance, since it’s a lot of playing for a lot of different people.

Heading into the third hour of juries, I was playing “Porgi, amor” from Mozart’s The Marriage of Figaro.  This is one of the loveliest arias in the soprano repertoire, full of sorrow and love and longing.  So there I was, playing away, and I caught myself thinking very deeply and in great detail about… a sandwich.

A sandwich?  Really?

Okay, so I understand that the RA and the RA meds can interfere with my thinking and make concentration very difficult.  I also understand that the prednisone taper I’m doing probably had a lot to do with the subject matter.  And it was a really GOOD sandwich – prosciutto, fresh mozzarella, roasted red peppers, and pesto on artisan bread.  I also know that most professional accompanists would probably admit to plenty of mind-wandering while playing, especially when they’re playing pieces they’re played hundreds of times with dozens of singers.  (“Porgi, amor” falls into that category for me, as did most of the pieces in yesterday’s batch of juries.)  Some might even take some pride in it – the music is so engrained that they can play on auto-pilot while their minds are completely free to do something else.

But still.  A sandwich?  Doesn’t Mozart deserve better than that?  Doesn’t the singer?  Don’t I? 

My friend Meg, one of the most gifted musicians (and people) I know, has recently started a blog.  The other day, she wrote a post called “Are you HERE, OR NOT… Attention MUSICIANS and EVERYONE ELSE TOO!”  You should really read it, whether you are a musician or not.  It begins with this quote: “I told a student today, look, if you are going to play this piece, you have got to go all the way, give it your all, no holds barred…if you do not want to do this, don’t bother!”  She went on to write about the experience of learning to take the music in fully, breathe with it, listen and connect deeply.  When she was younger, she says, music actually hurt her.

When I was younger, certain pieces of music used to stir up a wild longing in me that I called “howling at the moon.”  In graduate school, I remember being in the listening library late one night when I first discovered an opera that would become one of my lifelong favorites.  At the end of the listening session I rushed from the library, heart pounding, got into my car, and drove around in the middle of the night searching desperately for an open record store because I HAD TO HAVE IT.  I used to make mix tapes of pieces of music that pierced me to the heart – strange, eclectic groupings that crossed all kinds of genre lines.  I would hear a piece and have to make it my own, and it would play in my head constantly, keeping me awake at night.  I didn’t always have the discipline or the patience to work like I needed to, but sometimes I did.  At any rate, I had the passion.

When RA came along, it brought fear with it.  Fear that my hands would become deformed and stop working.  Fear that I no longer had the stamina or energy to do the work I loved.  Some of this turned out to be true – I really don’t have the stamina anymore, and have had to cut back a lot.  Some of it has not yet come to pass – my hands and wrists have only minimal damage – and who knows if it ever will?  But the fear had an interesting effect on me.  Because I was afraid that my music would be taken from me, I launched a pre-emptive strike – and took it from myself. 

I am still a working musician, even if I work a lot less now.  I am still out there, doing things like yesterday’s juries.  My career, though smaller, is by no means over.  But here I am, thinking about sandwiches while the heartbroken Countess from Figaro pleads with the heavens for her wandering husband – “Give me back my treasure, or let me die!”  I have quit before actually quitting.

It’s true that my technique is not what it used to be, and that there are some things I just can’t play anymore.  It’s true that I can’t spend as long at the keyboard as I used to.  Let’s say that my fears come true, and in a few years I am unable to play the piano anymore.  Shouldn’t I make the most of what I am doing now?  Shouldn’t every moment spent doing this work be precious and joyful?  Even if a piece is simple, or even modified, can’t I still play it with everything I’ve got, as Meg describes?

My physical therapist was annoyed that I insisted on playing for three hours yesterday.  She was right on one level – I’m in a lot of pain today, and I know that yesterday set me back – but I made a commitment to the singers and had to honor it.  I have promised her that I will not play at all for the next few weeks, and I will honor that promise because I know that I need to focus on my health right now and not risk permanent damage. 

But here’s the thing – I want it to HURT me.  Until yesterday’s sandwich wakeup call, I wasn’t feeling much of anything about having to stop playing.  I want to feel restless, eager to get back to playing.  I want it to make me work harder at my physical therapy.  I have been shutting myself off from music, not allowing it to move me, and I have been wandering around half-dead.  When I cut myself off from that part of myself, everything becomes flat and colorless, and depression isn’t far behind.  For the next few weeks, I won’t play the piano, but I want to listen to music, breathe it in, sing, move, long for it.  And if the day comes that I really can’t play at all anymore, I don’t want to go gentle into that particular good night.  Music deserves my grief.

This morning I was supposed to go to my water exercise class.  Instead, I decided at the last minute to go see the Metropolitan Opera’s live HD broadcast of Offenbach’s Tales of Hoffman, which was showing at a local movie theatre.  For four hours, I drank in gorgeous music, beautiful scenery and costumes.  And I don’t feel that I fell off my exercise wagon; I can go to the class anytime this week.  My body may need exercise, but my soul needed this.

Thanks, Meg.

Musical Interlude: Lullaby for Christopher

Tuesday, December 8th, 2009


I’m taking a little break from circling my wagons in order to present a piece of music.  (Music is one of my most important wagons, actually, but that’s a subject for another post.)  This is one I wrote awhile ago, but this weekend I took it out, changed some things a little, and made a recording, which I had not done before.  The piece was written as a final project for a class called “Transformative Learning,” which I took while I was pregnant with my son.  We were supposed to create something that represented a transformative experience in our lives – and what could be more transformative than a birth?

“Lullaby for Christopher” is a short piece for solo piano – no vocals – in three sections.  The first section was written during the last month of my pregnancy.  It starts with a rocking motif that is meant to represent the baby’s heartbeat in the womb.  Two other musical motifs enter, representing the mother and the father, since these are the voices he heard most often during that time.  The three motifs were written using the initials of our family members.

Before I could finish the piece, Christopher arrived – two weeks early.  The second section was written in the week after the birth, when I was home recovering – it’s meant to represent his entrance into the world.  Then the third section is essentially a repetition of the first section, but with the themes presented in reverse order, representing the baby taking comfort in the familiar sounds of his parents’ voices as he drifts off to sleep.

I could probably express it more eloquently than that, but instead, I think I’ll just play it for you.

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Ain’t Just A River In Egypt

Thursday, October 29th, 2009


The Sphinx is here today to help me contemplate the great mystery of my Denial.

By all rights, I shouldn’t have any denial left.  I was first diagnosed with RA two and a half years ago.  I went through the usual stages of grief – several times, actually.  I’ve been active on RA discussion boards since my diagnosis.  I talk about RA, read about RA, learn everything I can about RA.  Hey, I even have a BLOG about RA.


Last week my physical therapist suggested that I start wearing flexible wrist braces and a cervical collar when I play the piano.  I looked at him as if he were crazy.  “Is that really necessary?”  He said that he thought it was.  I explained to him that I already have a collection of unused braces, supports, etc. in a box under my bathroom sink from a variety of past injuries.  He asked if any of them are the kind he is recommending.  (They are not.)  I then explained that I had always thought that it wasn’t good to use things like that for too long because the body becomes dependent on them.  He pointed out the difference between recovering from an injury and accommodating a chronic condition.  I further explained that I couldn’t possibly wear braces and a collar to work – I have been working hard to keep my RA a secret from people at my workplaces.  He said that he understood that, and that I would still benefit from wearing them during my at-home practice.  I struggled to come up with other reasons why I shouldn’t or couldn’t wear them.

Then he said, very gently, “Sometimes people with very driven personalities have the hardest time accepting that there are things they really can’t do anymore.”

And that was when I came face-to-face with Denial.

I started physical therapy about a month ago because I was experiencing headaches, a sore neck, and sore wrists and forearms after playing the piano.  Sometimes one of my hands turns cold and pale in the middle of playing.  Still, I chose to believe that this had nothing to do with the RA.  My rheumatologist recently increased my Remicade, and my bloodwork is looking great, so on paper, the RA is under control.  I am still exhausted and running fevers in the late afternoon, but I stubbornly chose to believe what was on paper.  This was made easier by the fact that my recent symptoms are all muscle-based, not joint-based.  My joints are actually doing okay – no visible swelling or pain.

My physical therapist, however, persists in treating me as an RA patient.  He explains that my muscles are most likely tight and sore because they are overcompensating for underlying joint instability.  He agrees that the joints don’t seem to be in a current flare, but doesn’t think that changes the basic problem.  He also points out that as the weeks pass and my Remicade begins to wear off, I get more tired, and it gets harder for me to do my PT exercises.  This is a pattern I didn’t want to acknowledge, even though it’s one I’ve seen over and over. 

Why am I so determined to believe that my RA is under control, and that the pains and problems I’m experiencing must have another cause?  Why, after all this time, do I still feel such anger and sadness when I realize that no, I am most certainly not in remission?  Isn’t this something I already know?  How many times will I cycle through the stages of grief before I reach Acceptance?

I did a foolish thing – I committed to several performances this month.  Even though I was already experiencing the headaches and wrist pains, my pride just couldn’t handle saying “no” when I was asked – I perform less and less all the time, and grabbed on to this chance to feel like I still have a performing career.  This week, I have two long rehearsals and then performances on Friday and Sunday.  I did this knowing that my Remicade infusion is scheduled for NEXT week, and that the week before my infusion is always the worst.  I chose to believe that because we increased my dosage and moved the infusions closer together, this time would be different.  This was a huge leap of faith, and, as it turns out, a misguided one.  Last night I ran through the program and was in such terrible pain by the end that I wanted to cry.  There is no backing out at this point, because I am performing with others who are depending on me to be there.

This is not the first time I’ve committed to performances and then regretted it.  I’ve always been able to get through them, but suffered in the process.  Each time I tell myself that I need to learn the lesson, but so far, it hasn’t gotten through.  My fear is that one of these times, my luck will run out, and I’ll end up having to cancel, or that I’ll be suddenly unable to play in the middle of a performance.  These things would be career-enders.  And I would very much prefer to end my career on my own terms, by choice, with my head held high.  So why do I do this?


There is a fine line between fighting for something you love and denial.  I think I have crossed it this time.  I believe that I can continue to play the piano, but I think it’s time to back away from high-profile, high-pressure performances.  And I also think it’s time to accept that if I want to keep playing, the wrist braces and cervical collar might not be such a bad idea.  I would like to stop seeing them as admissions of failure and instead start seeing them as helpful tools, even friends.

For now, I will grit my teeth and struggle through the next several weeks.  I hope that next time I am asked to do something like this, I will be able to look back on this post and remember.

My New Baby!

Saturday, October 24th, 2009


Meet Little Martin!  I finally bought him yesterday, after doing lots of research and then waiting for just the right sale. 

I’ve wanted to play guitar for a long time, but have struggled with it.  I got an acoustic guitar for my birthday when I was thirteen, fooled around with it a little, learned some basic chords, and then put it away.  I always found it uncomfortable to play – it made my left wrist ache, and there were some chords I just plain couldn’t reach with my relatively small hands.  This puzzled me, since other people seemed to find guitar easy to play.

Once I developed RA, I figured that I’d just have to put the idea of playing guitar behind me forever.  Then I had a revelation – hey, maybe they actually made guitars in different sizes!  Maybe the one I got when I was thirteen just had an unusually wide fingerboard, making the strings hard for me to reach!  Maybe the tension or weight of the strings could also be adjusted to make the strings easier to push down!  Feeling dumb that I never considered these possibilities before, I contacted a friend of mine who is a luthier (fancy word for a guitar-maker) and asked him what he would recommend for a person with RA.  He threw out a lot of fancy terms I didn’t understand, but enough of it was clear to send me to a guitar store, where I discovered the Little Martin.

It’s called this because it’s a 3/4 size guitar, designed for backpacking, tossing in an overhead compartment of a plane, or for use by children or smaller adults.  In the store, I tried the few chords I know and found that yes, it was easier to reach them.  My luthier friend also suggested that I have the guitar set up with light-gauge strings – this would mean sacrificing some sound quality, but might be a good idea until my fingers got used to playing.  I haven’t had this done yet – I’m going to see if it turns out to be necessary or not – but it’s good to know that it’s an option.

Buying this guitar represents three things to me.  The first is admitting that my RA is a reality, and that I need to adapt to it.  I see the Little Martin as a very beautiful assistive device – a piece of gorgeous adaptive technology that will make something possible for me that otherwise might not be.  The second is that RA does not have to mean giving up all dreams.  Sure, some things might not be possible for me anymore, but sometimes there’s a way around obstacles. 

The third is a step towards taking good care of myself and appreciating myself, something I wrote about in my last post.  Little Martin was not cheap, even if I did get him at a fantastic price.  The truth is, I don’t know how much I will actually play guitar.  Little Martin may end up in the corner gathering dust.  But buying him meant that I decided that I deserved a beautiful present.  I had to fight with some guilt over spending the money and wondering if I would actually use him, but in the end, I did it.  And I think that’s worth celebrating!

Seeing Clearly

Wednesday, October 7th, 2009


I had my Remicade infusion on Thursday morning.  Because of my recent long flare, my rheumatologist decided to increase my dosage by one vial, and also to move my infusions from every 8 weeks to every 6 weeks.  We’re hoping that this will do the trick; otherwise, we may have to think about a change of meds.

On Friday morning I woke up.  I lay in bed for awhile, not moving, feeling cautious.  How was I feeling?  What would happen when I started to move, tried to walk?  Then I got out of bed.

The sun was shining.  The birds were singing.  I half-expected small woodland creatures to come to my window. 

There was NO PAIN.

The absence of pain is a truly extraordinary thing.  It’s like waking up from a long sleep (hence the above picture of Sleeping Beauty, for those who didn’t recognize her).  On a day-to-day basis, I don’t always notice the pain – I have learned to block out large portions of it, and it manifests instead as fatigue, or brain fog.  But when it is taken away, I can see clearly just how much pain there actually was. 

The rest of the weekend didn’t go quite as well – on Friday night, my toddler got the croup, beginning a period of several sleepless nights for everyone in the house.  When I found myself dead exhausted on Saturday, my first (illogical) thought was, “Oh no!  Maybe the Remicade didn’t work!”  Then I realized this extraordinary fact:  It’s possible for me to feel crummy for reasons that have NOTHING TO DO WITH RA.  Normal things, like not getting enough sleep, or taking care of a sick toddler, or, later, catching his virus myself.  (Carla, from the RA blog “Carla’s Corner”, writes about this very issue here – what perfect timing for me!)  And it sounds strange, but this makes me happy.  On Monday I went to work, feeling completely worn out from my weekend – but then I walked from the parking lot to my building, and realized that my body felt light and easy, with no pain in my knees or feet.  This walk is usually difficult for me – in fact, it was on this walk that I first noticed the painful feet that were the first sign of my yet-undiagnosed RA. 

So now I am sick, but still rejoicing in my lack of pain!  I hope I’ll get over this little virus soon enough to REALLY enjoy it.

And since this is a musical blog, here’s a song (not one of mine) to mark the occasion!