Posts Tagged ‘Music’

Musical Interlude

Sunday, May 16th, 2010

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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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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

Lullaby

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

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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.

Nonetheless…

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?

Denial.

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

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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

sleeping-beauty-a-moment-to-remember

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!

Remicade Dream

Sunday, September 20th, 2009

I’ve been thinking a lot about the purpose of this blog. When I started it, I described it as “a musician’s life with Rheumatoid Arthritis.” Recently, though, there’s been a whole lot of RA and no music to speak of. Unfortunately, this is a pretty accurate picture of how life has been going lately.

Annoyed by this, I spent some time this week at the keyboard, working on the rewrite of my “Remicade Dream” song. (To read a little more about the original song, or if you don’t know what Remicade is, go to the Why “Remicade Dream”? page on this blog.) Although the song is about the experience of getting a Remicade infusion, it was originally written one night while I was feeling particularly sick after taking methotrexate. It had a trippy, woozy quality to it that I liked, but seemed to be missing something. So this week I played around with some more instruments and different sounds, and I wrote a whole new middle section.

This song represents a complete departure from the simple, acoustic style of “Don’t Let Me”. On the whole, I think I prefer the “Don’t Let Me” writing style, but I enjoyed working on this one. It was a chance to play with some new toys, experiment with different layers of sound, and break out musically. Since I’m still figuring out who I am as a songwriter, this is all good for me. Also, the trippy, effects-heavy style seems like a more accurate picture of my Remicade experiences – partly since I always premedicate with Zyrtec, which makes me very spacy, and partly because the whole experience is so surreal to begin with.

As a side note – my husband always drives me to my Remicade appointments and then takes our son to the park. (He stayed with me the first time because I was nervous, but I’m used to it now.) The first time we did this, he told me, “Text me when your bag’s getting low.” So I texted him the following: “Mah bag’s gettin’ low!” This has now become a catchphrase in our family – if I’m feeling particularly bad or low-energy, I tell him mah bag’s gettin’ low. So naturally, I had to work this concept into the song somewhere…

I’ve also created a new page – “The Songs”, a place where you can go to hear all of the songs on this blog without having to search through the posts.

So here is the new version of “Remicade Dream” – hope you enjoy it! It’s best listened to with headphones to get all of the strange effects.

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Auch kleine Dinge (Even Little Things)

Thursday, September 3rd, 2009

Rose

 

Every weekend, my sister used to go to an outdoor market and buy herself a single beautiful rose. She would cut the stem short so that the flower rested perfectly on top of a bud vase. All week long she would keep this vase on her desk at work, a small pleasure that made her days a little brighter.

A song by Austrian composer Hugo Wolf (1860-1903) has been running through my head almost every day this week, and I am beginning to think it is trying to tell me something. It is called “Auch kleine Dinge,” which means “Even little things,” and the translation is as follows:

Even little things can delight us,
Even little things can be precious.
Think how gladly we adorn ourselves with pearls;
They are heavily paid for and are only small.
Think how small the olive is,
And yet it is sought for its goodness.
Think only of the rose, how small it is,
Yet smells so lovely, as you know.

Here is a recording of this song from a concert in 2003, before I had RA. (I’m the pianist on this recording, not the singer.)

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I have been in a flare since Monday. When this happens, big things like plans, dreams, and my sense of self seem to go out the window. My world shrinks down to the size of my own body, sometimes even to the size of a particular joint that is causing the most pain. It’s hard to be cheerful or optimistic or even just okay. Even when I am not actively flaring, just having RA has made my world smaller in many ways – activities I can’t do anymore, friends I don’t see because they were connected to those activities, parties I miss because I’m too tired to go, being unable to enjoy a nice glass of wine or a Mai Tai because of methotrexate, having to watch what I eat because of prednisone, staying home with my toddler too many days because taking him out is just too difficult…

It’s important to grieve those losses, and I am doing so. My songwriting is one way of working through these feelings, and writing and talking with trusted friends help too. I know that grief is not always a straightforward process, and that as my disease changes, I will probably have to revisit grief many times. But I also have a growing awareness of the good things in my life – not just the old things that I still have, but new things that have come along.

So I am trying to remind myself to notice and cultivate the “kleine Dinge” that add a little brightness to a difficult situation. Sometimes this seems very, very hard to do, but I think it actually makes a difference in how I feel. I also realize that I have been neglectful of this, especially when I look at people like my sister, who knows how to take this kind of joy in many things in her life.

Today’s “klein Ding”: My 21-month-old son has just learned how to give real kisses! He used to throw air-kisses, but the feeling of his little kiss on my cheek is something completely new, and amazing.

What are some of the “kleine Dinge” in your life?

Launching

Saturday, August 29th, 2009

So here I am, blogging.  I’ve never been much into the concept of blogging – I’m a pretty private person.  But things have changed since the onset of my RA – I’ve been helped so much by the blogs of other people with this ridiculous disease, and it occurs to me that maybe I can help someone else.  So away we go…

I’ve been a musician all my life.  With the exception of some summer temp jobs when I was in college, I’ve never held a non-music job.  It’s not an easy way to make a living, and I worked ridiculously hard for years and years.  One summer I worked as a pianist and coach for an opera program, and I played the piano for nine hours a day, seven days a week.  I have a small frame, and my body took a beating – tendonitis, repetitive stress injuries, even a long bout of thoracic outlet syndrome.  But I kept going.  In 2006, I was again working seven days a week, this time at about five or six different jobs, with lots of one-time gigs scattered here and there.  I even worked on all the major holidays, since one of my jobs was at a church. 

Then I developed rheumatoid arthritis.

Some other time, I’ll tell the story of exactly what happened.  For now, it’s enough to say that it changed everything.  Suddenly, working seven days a week was no longer possible.  I was waking in the morning to find that yet another finger had gone stiff and swollen overnight.  I began stumbling over notes at the piano, having trouble concentrating in rehearsals, becoming cranky with my fellow musicians.

So, as I saw it, there were three things I could do:

1. Deny that anything was wrong and push through as best I could, relying on shots and steroid pills to get me through my performances.
2. Give up music and find something else to love.
3. Find a way to adapt and keep music in my life.

If you have RA, you can guess how well #1 worked.  I was surprisingly lucky for a long time – somehow, I managed to get through the performances that were important to me.  But I finally had to accept that I needed to slow WAY down.
 
I tried #2 for a little while, during times when I couldn’t work.  Sometimes being around music and musicians was so painful that I thought it might be best.  Going to the opera made me incredibly sad, and I stopped listening to classical music at home.  I didn’t touch the piano when I didn’t have to.  But something important inside me wasn’t being fed.

So for now, it’s #3.  I’m still a working professional musician, but I now teach more than I play, and work only a few hours a week on average.  More importantly, I’m spending a lot of time thinking about the nature of music-making, and looking for ways around my physical limitations.  I also spend a lot of time thinking about the concept of perfection.  Classical piano is a perfectionist art, or at least it was for me – many hours of practice went into polishing a piece of music until it was as nearly perfect as possible.  When I made mistakes in public performance, it was a cringeworthy experience.  But mistakes are more likely now, and it’s harder for me to play technically difficult classical pieces than it was before.  Someday it may be impossible.

In the middle of all this struggling, I started writing music of a completely different kind.  I guess you could call it popular music – I don’t know what specific category my “sound” falls into, or even if it falls into one at all.  It is surprisingly hard for me.  Writing music might seem like a natural thing for a trained musician to do, but sometimes all that training, all those ideas about what it means to “compose,” all that perfectionism can really get in the way.  But somehow, I’ve come to feel that it’s important for me to do it anyway.  I’ve lost a lot of things to RA; now I want to start gaining some things. 

So this is what this blog is about, at least for now.  It’s a place for me to wrestle with my thoughts about RA, about music, about art in general, about my new role as a baby songwriter, about whatever else might come up.  It’s also a place for me to share the music that comes out of this. 

It’s also not going to be a “perfect” place.  Sometimes I am philosophical, or even positive, about the RA and all the changes in my life.  Other time, I am angry, rebellious, sad, self-pitying.  Sometimes I’m irreverent, politically incorrect, or crass.  All of that will probably show up here, because I want this blog to be real.  I find that sometimes I’m helped by reading blogs where other people are being brave and creative in dealing with their illness, but other times I am comforted by seeing that other people go through the same anger and pain that I do.  I don’t know yet what the balance will be on this blog – it depends on what happens to me, and how I feel about it at the time.  Life is messy; art is messy.

Here, then, is the first song I ever wrote about having RA – it’s called “Don’t Let Me.”

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