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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  1. RA Guy says:

    I’m so excited to see that you are blogging! It’s so nice to see all of the new voices of RA that continue to be heard online.

    I know that I myself have gone on the journey from step #1 to #3 – more than once – in regards to the things in my life that I enjoy doing. Seems like you are in a good place. And while it may not be “perfect”, as you mention, nothing ever is really.

    Looking forward to your future posts!

  2. WarmSocks says:

    Welcome to the blogosphere. Thank you for sharing your song; it’s beautiful.

  3. Kathy says:

    I, too, am a musician who is gradually losing the ability to do what I have always done. The hands that could once express anything through the keys of the piano now stumble and embarrass me with wrong notes and inaccurate rhythms. I teach music in elementary school, and I have to change so many things….. we always do songs with fingerplays in kindergarten, but it broke my heart last year when teaching the always-popular “Five Little Puppies” song. I held up my hand to demonstrate as the puppies disappeared one by one, and an observant little guy remarked, “Whoa! Look at HER puppies! They’re all bent and crooked!” No more puppies for this gal.

    I loved your song “Don’t Let Me”. It’s my story too. My days are now about finding different ways to do the music I want to do; it’s the “new normal”. I keep reminding myself that it certainly could be worse.

    Please keep on blogging. I look forward to reading what you have to say.

  4. Diane says:

    A standing ovation from me to you!!!! Thank you so much for sharing your story so eloquently!
    I wish you well in your new endeavors!
    ~ Diane (fellow RA’er)

  5. Marie says:

    Your blog is really good….What a journey our RA lives are!

    Your song was very beautiful, you should get it published/recorded/ well you know whaterver songwriters do lol… (Sorry, not musically talented/inclined here, don’t know the lingo.

    I can’t wait for others in my life to hear your song! It was impressive!

  6. admin says:

    It’s great to “meet” you, Kathy! I was hoping that this blog might reach some other musicians with RA. I think musicians have a tendency to identify who they ARE by what they DO, probably even more so than other people. This is something I’m working on…

  7. Sue says:

    Absolutely beautiful. RA is a terrible thing, it took me years to get used to the “new me”…..I forgot the old me until hearing your song. It is very sad for all of us but we must continue to find silver linings and these blogs are a Godsend for all of us who struggle alone.

  8. nat says:

    So much of this has struck a chord with me, although my RA onset at age 16 (I was misdiagnosed with RSI, it took 7 years to get even a tentative diagnosis) and I never intended to become professional, my entire social life as a teenager revolved around music and orchestras. Falling out of that was incredibly hard (I fled abroad once I got to 18; you can’t backpack with a cello.) and I sometimes still find it difficult to go to concerts, and for quite a few years I couldn’t bear to listen to classical music at home. I can’t imagine how much more difficult it must be for you.

    I believe the statistics of professional musicians who are in pain are something astronomical, although I have no idea where to find a citation for that. I think it has a lot to do with music being a part of your identity, it’s extremely difficult to let go of it. I can’t listen to your song at the moment as I’m on an extremely slow connection, but I’m bookmarking for when I can!

  9. Cathy says:

    Welcome to Blogger Land. In our family I am the one with RA but have a musician husband (guitar) and can only imagine what life with stiff fingers for a musician must mean. I look forward to reading more. Good luck and sending healing thoughts.

  10. Kari says:

    Welcome to the world of blog!
    Thank you for sharing your pain, insight and struggle.
    I keep living 1 – 3. lol. I never learn
    I was a singer before this disease struck but these days I can’t. My vocals are not what they use to be. Now I sing for pleasure, and with children that have juvenile auto immune diseases. Through song they are learning (along with myself) we may have a disease, it doesn’t have us. It may take things from us but we can fight back by evolving into other things.
    Sometimes we have to have many voices to be one voice–one song.

    Best Wishes,

  11. Amanda says:

    I love your blog- welcome! I too have gone through choices 1 – 3, sometimes I still go back through them. Maybe it’s an ongoing struggle that we’re always going to be adjusting to? I don’t know. And I totally relate to the struggle with not wanting to give up music- while I’m not a musician (my friends will attest to that, trust me) I’m a runner and a dancer and can only do it minimally now. I know how much it pains me to give it up….and it’s not my job!


  12. Joy says:

    Thank you for sharing.

  13. Teri says:

    Lovely song – made me cry. I was not a professional, but you reminded me of why I was upset about selling the piano I’d used from age 5 to 55. It was just such a lovely friend.

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