Chronic Disease and the Flute

In the mid-nineties, in an office in a Sacramento suburb, my rheumatologist delivered the following advice:  “I want you to become obsessed with your fitness.  I want being healthy to become a big part of who you are, they way practicing your flute is a big part of who you are.”  Because I was in my twenties, and because he was partly incorrect, I ignored him.  I had no specific diagnosis, just a collection of symptoms,  and the flute wasn’t part of who I was, it was who I was.

Most professional musicians I knew then, also in their twenties, felt the same way.  We were dedicated.  We would sacrifice and bleed for our art.  And so, if I spent more time practicing than exercising and focusing on eating in a healthful way, what difference did it make?  No one could put a name to the stiffness in my joints I was feeling, and no one could explain exactly WHY my platelet count suddenly dropped to dangerously low levels and would NOT COME BACK UP.  And so it didn’t matter.  I would keep practicing, hours and hours a day, not counting the hours in rehearsal, and keep plugging away taking auditions and attending master classes and taking lessons, to keep my skills sharp.  (This was in addition to teaching, of course.)  If there was a connection between my health and my ability to play, I’d deal with the issue then.

The connection didn’t happen then.  I continued to play professionally, unimpeded by health issues, eating what I wanted (lots of processed carbs and junk) and putting on weight until we moved to the east coast for my husband’s job.  The auto-immune symptoms that had sent me to the rheumatologist in the Sacramento suburb disappeared.  I had two children and shifted my focus to teaching.  I taught flute and music academics at a conservatory.  I developed a private studio.  I began doctoral work.

During the first (and what was to be my last) year of doctoral work, the stiffness in my joints returned, and a new symptom surfaced – constant thirst.  My husband had, for many years, teased me about the number of glasses of water I’d leave all over the house.  I explained it away as a habit I’d picked up as a student at the Aspen Music Festival.  Everyone there always seemed to have a water bottle on them.  It was hot and the climate was dry, and we were always playing, hiking, or sleeping.  I reasoned I had simply never let the habit die.  But it got worse.  I was finding it increasingly difficult to give a lecture without a glass of water by my side.  My mouth got very dry very quickly, making it difficult to speak and enunciate.  More than once I sent a student to get me a glass of water so I could continue.

My eyes started to go dry, too.  After a very painful eye incident involving a contact lens, a highly chlorinated pool, and my pre-school age daughter venturing too far into the deep-end of said pool, I ended up in a rheumatologist’s office again, (sent by a very diligent and observant opthamalogist).  Nearly fifteen years after the Sacramento doctor had given me his advice, I received similar advice and a diagnosis.  “You have Sjogren’s Syndrome.”  “What?”  “It’s an auto-immune disorder in which the body attacks the cells which produce saliva and tears.”  “Here’s a prescription medicine that will help produce saliva.”  “Use these eye drops.” “Lose some weight and take something off your overloaded plate, because those are two things you CAN control.”

Ah.  Immediately and simultaneously diagnosed as a Sjogren’s Sufferer and a Control Freak!  I am indebted to the nurse that spent all that time getting to know me that day, because she knew how to say it, “Honey, something has got to go.”  In response to a challenge from Bassoon Editor Ryan Romine, I wrote an article for The Double Reed, journal of the International Double Reed Society, detailing how and why I arrived at my decision to leave academia and focus on my private studio, so I won’t go into detail here.  I teach my students with a passion I never had before I put my full focus on it.  I continue to play, because I think it’s important to keep my skills at a high enough level to demonstrate in lessons, and I believe it’s important to keep learning.  But there are struggles.

Like every parent, I struggle to find time to practice.  I try to find time while the kids are at school or after they go to bed.  It takes me longer to warm up, especially in cold weather, because my joints get stiff and my extremities get cold, and my muscles tend to contract into tight little masses of fibrous tissue.  It’s just hard to get going sometimes.

I’m also particularly careful about eating well and staying fit.  A week after my diagnosis, I hired a trainer.  I’ve lost a great deal of weight and built some muscle, and that helps.  But some days, it really is a battle to get moving with the fluidity so many people take for granted.  We’ve had a particularly cold and snowy winter, and I recently told my husband that I now understand, on a visceral level, why the elderly in this country move to Florida.

Increasing my fitness level has really helped my breathing.  Go back and read that sentence again, ok?  I can take larger breaths, more quietly and more quickly than ever before, and I can sustain a phrase longer than I ever could.  And I’m practicing and performing LESS now than ever before.  (Now, wind player reader, go join a gym.)

I’m very aware of and attentive to my posture.  How I’m standing.  How I’m grounding my body.  How I’m balancing the instrument.  I have no issue using a Bo Pep or other balance/comfort aid to help hold the instrument.  I don’t understand the backlash.  While we don’t want to use these devices as a crutch for poor posture and bad balance, we do what we need to do to play our instrument.  Bottom line:  if you don’t need them, don’t use them.  If you do, use them and forget the guilt.

I move more when I play.  I  began doing this instinctively – because it felt better than standing still and seemed to allow me to play for longer periods of time, and I recently received confirmation and affirmation in this practice.  During a teachable moment, my trainer told me that for people with auto-immune disorders, holding one pose (even a comfortable one) for an extended period causes the muscles to react by contracting more tightly than before.  For example, if a “normal” person stretched their body long on the floor (think yoga “corpse” pose, but with arms stretched to the wall behind you, and feet reaching for the opposite wall) and held the pose for 30 seconds, they would return to the normal position with stretched and limbered muscles.   If I or someone else with an auto-immune disorder held the same stretch for the same amount of time, once I released the stretch, my muscles would respond by contracting, sometimes painfully.  And so I move – not bobbing up and down to the beat, but laterally, often to the phrase, and sometimes aimlessly.  Just keep moving.  And use a mirror or camera to make sure you’re not distracting or detracting from the music.

And I keep water nearby.  I keep water on-stage when I perform.  I’m still experimenting with how much water is enough or too much once the adrenaline starts flowing before a performance.  I do have my saliva-producing medication regulated though.  When I first began taking it, I was taking too much, and there was nothing to do but laugh when drool started running down my chin in a dress rehearsal.  Glamorous!  Classy!

All musicians have some issue (maybe issues?) that they bring to the practice room or the stage with them.  Mine is Sjogren’s.  Yours might be stage-fright, or an emotional issue.  Who knows?  We take these “set-backs”, we figure out how to work around them, and suddenly, we see they were learning opportunities in disguise.  Sjogren’s has taught me to practice more thoughtfully, to plan my time on stage carefully, and to have a sense of humor about my life and my career.  I stopped being competitive, and began to focus on doing what I could do, what I was born to do, with a passion.

Advertisements

About fluteromano

An active freelancer, private teacher, and university professor settles down to raise a few kids in a small town. For my professional bio, please see my studio website: www.charleneromano.musicteachershelper.com.

2 responses to “Chronic Disease and the Flute

  1. Jerry Pritchard

    Wonderful story of overcoming adversity, Charlene! So nice to learn you have found what works and is needed for you. I have often thought that I had some auto-immune disorder, but physicians have never penpointed it. I can really identify with the water consumption issue: The summer I was at Aspen Festival I didn’t understand why everyone was carrying around water bottles…also wondered why the reed players were going crazy with reeds that played like popsicle sticks. (I now drink 2 liters of water a day under a chemotherapy regimen.) I learned to cope with the altitude and dryness, but, Wow, could I breathe well, play forever, and make a huge sound when I got back to sea level…for a couple of days, anyway. Really pleased that you have found balance and joy in your life. All best, Jerry Pritchard

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: