Posts Tagged ‘Music’

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



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?

Explaining RA

Wednesday, September 2nd, 2009

To be honest, I don’t explain my RA very often.  I’m selective about the people I choose to tell, for reasons both good and bad.

The first reason, a very practical one, is the fact that I am still a working musician.  This is a word-of-mouth business, and one that is very skittish about things like illness and injury.  If word starts getting around that I have a disabling chronic illness, people will stop calling me for gigs, regardless of how well-controlled my illness may be.  I have seen this happen before to talented friends who chose to disclose their conditions.  I made the mistake of telling one colleague about my RA, and then watched as all referrals from that quarter dried up.  At this point, while I am still capable of playing, I’d prefer to be the one to decide where my limits are, rather than having them decided for me.

The second reason is to avoid the following: “Oh, I have arthritis too, in my knee, but I just rub Ben-Gay on it and I’m fine.”  “Your RA will go away if you just take this supplement/eat this food/don’t eat this food/stand on your head and count to 50 backwards…”  Or everyone’s favorite: “But you don’t look sick!” I could go on, but I think you get the idea, and have probably heard these things before if you have RA.  Eventually I will get to the mature, healthy point where I can just smile and thank the person and let these things go; at this point, they still annoy and upset me, or, worse, make me want to argue.  This isn’t good for me.

The third reason is really NOT a good one: because talking about it interferes with my well-crafted denial.  Although I’m much less in denial than I used to be, it still pops up now and then in surprising ways, and one of them is my reluctance to tell people, and my hope that I can pass for “normal.”  (At a later point, I plan to write a whole post about my journey with denial.)  I have gotten better about this, and have told more and more of the people in my life.  Writing this blog helps too.

As I start to tell more people, I think about ways to explain the disease that are clear and simple, yet accurate.  Some of the explanations I have read make RA sound like something mild and benign, while others are terrifying.  While both sides are true for some people, most of us live somewhere in the middle, and I’ve been looking for an explanation that is thorough without being either overly scary or dismissive.

Enter Rheumatoid Arthritis Guy, who writes what is probably my favorite RA blog.  (If you haven’t seen it, you really should check it out.)  He created what I think is a great explanation, both simple and thorough – the 60-Second Guide to RA.  From now on, I think I will send my friends there when I want them to understand.

In the meantime, the guide has helped me to focus my “30-second elevator speech” – the brief explanation that gets the main points of RA across before people’s eyes glaze over.  I’ve never actually delivered this speech, but as I become more open about my condition, I’m sure I will.  The way I choose to share (or not share) the information is a reflection of the way I feel about the disease.  I know where I would like to be with it, although I’m definitely not there yet – my eventual goal is to be able to talk about my RA in a simple, calm way, as a fact of my life.   Not the central fact, which is how it sometimes seems, but simply a fact.  Not minimizing it, which does a disservice not only to me but to others with chronic illnesses, but also not turning it into a giant melodramatic tragedy.

Maybe I will get there someday…


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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