September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

Archive for April 2017

April 26th 2017 My life right now...

Focusing on things other than my disorders is helpful; I get enough reminders throughout my day of my disorders. I wrote about my big music goal, which is just that - a goal, not a guarantee.  In my day to day life, there's only so much I can do on any given day that moves me towards this goal.  In the meantime, there's this thing called my life.  My life right now.

I had a session with a potential new mental health therapist recently, and surprised myself at how emotional I got.  My tears flowed, talking about everything that's happened to me in recent years.  In part, I think I felt comfortable enough to share, but it also made me realize that I'm not done processing what happened to me.  How much my life has changed.  There is power in the spoken word, and though I'm used to telling people my diagnoses, I'm not in the habit of telling them what happened to me.  Giving voice to that in a safe place, is powerful, and hopefully will be healing.  I finished the session saying "I guess I'm trying to rebuild my life."  In truth, this is about more than music.  It's about social life, about DOING things, beyond the internet.

I don't, fortunately, suffer from migraines every day.  That's not, however, by accident.  It's because of how I live my life.  Avoiding my multiple food triggers, noisy places, bright lights, and pacing myself make a big difference.  This means my life has very distinct limitations.  I live with these limitations because I HATE migraines.  I cannot tolerate them.  Migraines are not regular headaches.  For me, they are a unique, debilitating kind of pain that makes it so that processing anything - thinking - becomes incredibly difficult. 

There are all kinds of visual issues for me as well, so I don't go to movies, and rarely go to restaurants.  Venues or events with a lot of people are challenging for me.  Ron (my husband) deals with all kinds of paper work tasks because of my vision disorder.  I am working hard in vision therapy, and have made progress.  I know that.  But this recovery of mine, in a sense of my self -  my life - is not an easy journey.

So, as I think about music, I also think about the overall picture of my life.  What I fill it with NOW.  With the exception of writing, my creative outlets are only a few minutes out of my day.  Meaningful, and important, yes.  Preferable to focusing on my disorders?  Definitely.  But social life, life beyond the internet, that's really the other significant piece I want.  I am very grateful for all the positives the internet offers me, and for technology like audio on Google Translate for listening, and Dragon Naturally Speaking for using my computer.  It is not, however, enough.  I need to be able to go out more. 

Social connections have lots of well-researched health benefits, but honestly I don't think the research is entirely necessary.  To me, it's obvious.  Going out can be really challenging; my system has to work much harder, especially in new surroundings.  Currently, I can't do more than one outing in a day, going out in the morning the day after an evening out isn't something I do unless I REALLY have to, and going out four days in a row (even if the outings are in the morning) is difficult.  I need to talk to Joyce and Ann about this, because MY thinking is that somehow building up stamina (difficult to do) is one of the keys to increasing my social activity.

My overall frustration with all of this is that none of it happens quickly.  It all takes effort.  Time.  Which means that in the meantime, I try to do my home therapy mindfully, in the present, so my brain learns.  My body, my self.  I go about my days, and remember what I wrote a while back, about appreciating good things, positive moments, even if small.  Like snuggling my cat or dog, hugging Ron.  Noticing the beautiful Spring flowers. Listening to beautiful music.  Our family belonging to a wonderful congregation, which is actually not a small thing. I've got to mindfully focus on the positive.



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April 23rd 2017 Part 1 - Daring to have a big goal...

I bounce around emotionally about the concept of making goals.  I don't want to look back and think to myself "well, that didn't work, did it?".  I don't want to fail.  I know failing because you didn't study enough, or whatever, is different than what I'm talking about, but it still doesn't feel good.  Not succeeding at something really important.  I don't want to find out that a goal turned out to be too difficult in some way, too challenging.  I want to believe that achieving a goal I set for myself is a matter of figuring out how to make something work, how to break something down so that I can work on it, make that thing happen.  That it's a matter of time, effort and creativity. 

But I don't always believe that.  Sometimes I feel like there's something lurking, waiting to surprise me in a bad way.  For me, this isn't totally strange or irrational - getting sick felt like a surprise, freaked me out.  Waking up to a spinning world.  Looking back, did I miss any signals?  I don't know for sure, but honestly I'm not convinced that I did.  To borrow Oprah's phrase, what I DO know for sure is that none of us can predict the future.  I don't have complete control. 

What I also know for sure is that I can't live my life waiting for that next bad thing to happen.  I understand a lot more medically than I used to.  I am a much better self-advocate than I used to be.  I also know that there are some things that I DO have control over, like my attitude, my effort.  I know that setting goals feels necessary.  I need something to work towards.  If I don't set goals, I feel like I'm giving in to these disorders of mine, and that feels bad.  If I set a goal and it doesn't work, I guess the questions would be not only "why?", but "did I learn anything?", and then "what comes next?". 

I've been thinking about all of this because I've been working on a piece about being able to read sheet music again, and asked myself why I was hesitant to finish it, to post it.  Music is important to me.  The loss of the role of music in my life - being in a band, playing duets with others, teaching flute lessons - is very painful.  If I try again to work towards a goal that puts me closer to rebuilding my life musically, and it doesn't work, I don't want to have to deal with that.  So I put it off. 

But in the end putting off trying is giving up.  Settling.  I don't want that.  I cannot deal with the pain of the loss of saying that what I have right now musically is what I'm going to be left with.  So, I have to try.  I have to dare to set myself a goal.  And maybe I have to make myself believe that I can make it happen.  If something DOES happen that makes that unlikely, I'll have to face it, I'll have to see what possibilities exist for me.  But I can't let go of the music dream yet.  It may sound like a cheesy cliche, but in avoiding the possibility of failure, I prevent the possibility of success. 
**see Part 2


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April 23rd 2017 Part 2 - My goal: playing sheet music...

So here I go with my goal: I want to play sheet music again.  For me, this is a simple, but complicated statement.  There's SO much wonderful music out there, and I really want to be able to PLAY it, bring some of it to life.  Sheet music is, however, a big challenge. 

All kinds of multi-tasking:
Comprehension which requires processing the musical notes as well as the rhythms, tracking, figure ground (notes on the staff).  There are also multiple physical elements; moving my fingers, controlling my breathing, holding my arms in the correct position, sitting or standing properly, over all body posture/position, and using my tongue and lips. 

Mentioning my tongue and lips may sound strange, but musicians who play wind instruments may use their tongues quite a bit.  Tonguing is how I produce staccato notes, or simply separate one note from another.    Flute playing involves an unnatural position, or posture.  In a way, I'm used to the less natural position playing my flute requires.  However, I want to avoid physical problems now, so I'm trying to make changes, to make it work, after 40 years!

All these elements involved in playing sheet music make it feel like a big challenge.  A year and a half ago, I tried going too fast, and got frustrated and discouraged.  But not trying at all gets me nowhere.  I need to revisit it, because eventually I want to conquer this goal, master it!  So, I need to break down, and piece together all those elements I've mentioned.  That's what Ann and Joyce often do; break movement, visual tasks, etc. down to manageable levels, and then build from there.  I can discuss with them what I figure out is or isn't working, and they can help me understand. 

I took out the John Denver songbook I purchased last year, and using my finger, tracked through the seemingly simple song For Baby, For Bobby.  It's always fascinating to me to see what a piece of music I've heard, looks like on paper.  I tend to use another system - whether my finger, or audio (my own voice) - to help with tracking, guidance.  Clearly, this needs to change in order for me to play my flute while reading sheet music. 

Right now it feels like there's a missing connection, a missing link between reading the sheet music, and playing my flute.  I can play my flute, whether freestyle, or on good days a short melody from memory.  I can now read through some simple sheet music.  And yes, I had to take a break, and get reorganized, but I did it. So I've made progress.  But putting the two together - playing AND sheet music - just doesn't work, yet.  I get brain jam, or off balance, or both.  Too much to process.

I think about other creative hand/eye activities I do now, and compare to my flute, to try to figure things out.  Puzzle out what I need to work on.

Writing requires my computer.  This means using the keyboard, switching my gaze from the keyboard to the screen (though I do touch type), looking at the screen which always has SOME movement (almost undetectable, but there), and of course thinking. 

Playing our piano keyboard is different from writing OR flute playing.  The position is more like writing.  Looking at the keyboard is a visual exercise of sorts - the stripes of the keyboard, and hand-eye coordination.  The keyboard is not nearly as well known to me as the keys of a flute, but doesn't feel like a total stranger.  Find Middle C and go from there.  Don't worry about sheet music; I never knew how to read Bass Clef, and I'm not interested in that now. I just want to make some music, and I'm finding I enjoy it.

I've done a couple drawings, using colored pencils on cheap drawing paper.  It fascinates me to see the different designs and colors I created. It's a good visual exercise, as different colors and shapes emerge on paper, AND a bit of an emotional outlet for a few minutes.  I've got to tackle sharpening the pencils (not every day), which is also visual; holding the pencil sharpener, putting the pencil in and turning it.

Getting back to my flute.  I think the key word when it comes to sheet music is "eventually."  Because of the complexity of the task, playing sheet music - as opposed to only reading through it, or playing my flute without using sheet music - is not something that I'll achieve in days or weeks.  Understanding all the pieces is important; I can't work towards this goal without that knowledge.  There's a positive side to having such a complex, big challenge. I believe that all the work involved in being able to PLAY sheet music will mean more than just that.  I will have made a great deal of progress, tied a lot of pieces together, when I've accomplished this goal.  For now, I need patience and persistence... patience and persistence.


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March 17th 2016 Find energy, feel joy...

I looked recently at my Dec. 16th, 2015 post about my flute rehab plan; I've been thinking about my music, and reviewing my situation.  I still believe that, eventually, I will be able once again to teach private flute lessons.  I FINALLY did a mini practice lesson with my daughter Cara.  Overall the mini lesson went well, and was a good learning experience for me.  The problem is that making progress with this goal is very gradual.  I also find myself thinking when I'm doing my VT and FT, "how can I make this feel less like work?". 


The answer lies in feeling energy and enjoyment, which got me thinking about cognitive re-directs and cognitive over-rides.  Cognitive over-rides are, I think, a bit more natural and less overtly conscious.  It means that you find yourself focusing on something else while you're doing something, but without necessarily saying "I'm going to think about something else."     It's more likely to happen if you let yourself relax, rather than getting hyper-focused on your task.  Cognitive over-rides help make a difficult task easier, because you are no longer THINKING so much about the difficulty of whatever you are trying to do.  For example, if you are taking a walk, and start noticing your surroundings - sunshine, pretty flowers, birds, etc. - the task of walking becomes easier.


A re-direct is more purposeful.  You intentionally direct your brain to something else, and it can get your thinking, your processing onto a higher level.  A re-direct during a VT exercise will, I think, take the pressure off a bit, make it feel less like work.  I've found when I talk about something with Ann while I do an exercise, it almost always allows me to do better.  I think the same can be true on my own  - I can hum a tune or let myself think about things while I work. 


I messaged my friend Glenn recently about the fact that if you're really into whatever you're doing, you also often have better mental energy.  Being excited about something makes you feel energetic.  Boredom is very bad for cognitive processing - your brain kind of shuts down, or gets sluggish.   I told him I had decided to get brand new music to play, music that I really enjoy, and WANT to play.  If I have new music I'm excited about, I think it  will help my rehab/brain re-training. 


I always used to say that my students needed to enjoy learning to play flute, because if music isn't enjoyable, what's the point?  I know music can also be moving and cathartic, but there really needs to be an element of joy.  I thought about the idea of sluggishness and boredom when I took out a piece of sheet music I've played before, and played one line.  New music would feel fresh, without the baggage of remembering when I'd played it in the past, which is bittersweet for me.


Ann and Joyce were both very enthusiastic about my new music idea. They both always say my face lights up when I talk about music. I'm going to buy a John Denver songbook.  Surprisingly, I never bought a songbook of his music before, so actually playing his music would be new for me.  If I can't find flute solo arrangements that work for me, given the level I'm looking for right now, I'll buy one to play the vocal line.  I know many of his songs, so comprehension won't be so complicated, and I'll be playing music I love.


There's also the matter of timing.  I wrote recently about how important routines are to me.  I still believe what I said, but when it comes to brain re-training, the last thing I want is for my brain to get sluggish out of boredom.  The very word "routine" sometimes conjures up images of boredom - that "here we go again" feeling.  I think there needs to be a balance between routines for some things, and doing something a bit unexpected so our brains pay attention. 


Finally, there's this thing called fun.  Long term goals with a plan are important, but I also need short term fun woven into my day.  Things that make me feel good.  Part of that can come from listening to music.  Feeling good can also come, for me, from letting bits of flute playing be a more natural part of my day.  I - like many musicians - always felt an element of work in my playing because I thought of it as practicing.  Now I want to let that go, and just let music be a way to express myself.  So I'll go back to playing my flute more than once a day, even if it's very short.  When I think of it, I'll play my flute.  Probably more in the morning, but I'll see what feels  good; I'm hoping to feel energized, so I might surprise myself.


Letting my mind wander when I'm doing my VT and FT, as long as I'm not wandering into worry, will help me on my journey.  Music I love will help me.  Music is my thing, but some people are into crafts, gardening, or whatever. I've said before, but it's worth repeating - find something that is joyful for you, and make it a part of your daily life - especially for the difficult days.


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