Day 1 Gluten-Free

When I saw my doctor last week, we I told him that my digestive system had been even more temperamental than usual, so he suggested that I do a gluten elimination diet to see if gluten may be part of the problem.  I've done a lot of reading about Fibromyalgia and food sensitivities, and gluten is at the top of the list for things that people with Fibromyalgia might have issues with.  Some of the reading I've done suggests going off all the possible culprits at once and then adding them back in one at a time to see exactly what the issues are.  I suspect that I may also have intolerances for dairy, chocolate, corn, legumes, and nightshades (potatoes, tomatoes, peppers).  But eliminating all of that would mean totally re-working my diet and I don't have the time, resources, and patience to do that all at once.  So, I'm starting with the gluten and I'll see if that makes any difference.

The good news is that I used last week as a trial run and actually lost a couple of pounds.  I didn't go completely off gluten, but I did buy gluten free products for my lunches at work and I didn't do pastas or breads very much for dinners at home.  I found that I like the Amy's Rice Mac and Cheese even more than the regular version.  I also love their enchiladas, but they didn't like me back.  That could have been the corn, the beans, or the tomatoes.  Or it might just have been that my stomach didn't like anything that day.  I seriously have days that water causes digestive pain.

Anyway, today is Day 1 gluten-free.  I'll be keeping my food diary here, so posts will be pretty boring for awhile.  But blogging about the food is much easier than remembering where I put the notebook that I was writing things down in.

Breakfast this morning:  Pepper Jack Cheese and grapes

Fibro fog and other frustrations

Life with fibromyalgia.  Basically, there are 4 types of days that I have as I live with this condition.

1.  Days when both my body and brain refuse to work correctly.  I'm tired, I hurt, and I can't think clearly.  I know I'm in trouble when I can't even focus enough to read a book.  Teaching is a battle.  I can do it, but it takes so much energy to stay focused through the fog that I just come home and crash.
2.  Days when my body wants to work, but my brain doesn't.
3.  Days when my brain is on fire, but my body can't keep up with all the brain wants to do.
4.  Those oh so rare days when my brain and my body both function well.

Sometimes I cycle through these and sometimes they just occur in any random order.  For more than a week, I've been struggling with both mind and body.  But then I gave myself 12 hours of sleep on Friday night, and by Sunday morning (actually really late Saturday night), my body wanted to work.  I actually accomplished more around the house than I have in a long time.  Now my brain is trying to wake up too.  There are glimpses of clarity.  Is it too much to hope that I'm moving into one of those times when I can think and do the things I want to?

Options

Sometimes when it seems that nothing else could possibly go wrong, you have little ah-ha! moments.  Last week, I spent one evening in Urgent Care getting a leg injury from the week before checked out.  The next day, I day I developed laryngitis, and by the day after that I had no voice at all.  I had lots of reasons to be down and depressed, but I wasn't.  I'll admit I was slightly concerned, but my worries led down a different path this time.

Anytime a singer or voice teacher loses her voice, there is cause for concern.  And the suddenness of the onset had me worried a little, but I was pretty sure I knew what had happened, and a quick call to the doctor's office confirmed it.  The asthma meds I was taking because of the cold I had at the beginning of the month had caused the laryngitis.  One more drug to add to the list of things that I can't take.  After discontinuing the use of that medication, my voice started to come back and although it's not at 100% yet, I'm sure it soon will be.

But in those moments when my brain was asking, "What if it never comes back?" I didn't have my usual response.  I am a voice teacher.  That's what I do.  It's who I am.  It's what I spent years training for.  If I can't teach, basically the only other things I am qualified for are minimum wage jobs.  And in the past, that fear of not being able to teach and sing has sometimes been overwhelming.  But this time, it was different.  Singing and teaching are things I love, but they are not all of me.  It is not my entire identity.  And there are other career options that I could see myself re-training for.

The world is a lot less scary when you don't feel trapped.  Possibilities and options give hope through the tough times, and I'm so glad I could see them this time.

The good news is that I can still teach and I can still sing.  The good news is that I now also know that even if I couldn't do those things, I would still be OK and other doors would open for me.  AB told me that years ago.  I believed him.  I saw it in his life.  But now I know it is true in mine.  I wish I could call him and tell him that I finally get it.

The pattern

I wrote most of this post a few days ago, but didn't actually get around to posting it.  And now I know why.  Because there was another part of the pattern that I hadn't included, and I didn't realize it was part of the pattern until today.  My body has one other thing it does to get my attention--I trip and/or fall causing injuries that slow me down.

But I'm getting ahead of myself.  Here is the original post:

The pattern

I've been through this cycle enough times to know exactly how it will go, so why do I keep getting caught in it? First, I get a little stressed because I have overcommitted myself.  My body gives me a gentle warning to back off.  Sometimes it comes in the form of more pain and tension.  Sometimes the warning is fatigue.  Sometimes it is brain fog.  

When I don't listen and I don't slow down, my body starts creating combinations of brain fog, pain, and fatigue, hoping to get me to rest.  But, my life is intense, and I don't always listen.  Plus I've always had that personality that can keep pushing through a difficult situation.  I'm determined (or as some people may say, stubborn).  I don't give up easily.  And neither does my body.  

When the gentle, and not so gentle reminders are ignored, my body does the only thing left in it's arsenal.  It declares, "If you don't choose to rest, I will force you to rest."  Then it sends my immune system on vacation and leaves my open to whatever virus is most prominent at the time.  If I'm lucky, it's just a cold, and I can cut back on activities to get some needed rest and recuperation, but I can still get through work.  If I've really annoyed my body, it opens the door to things that involve vomiting, diarrhea, and general body aches that you know won't kill you, but you wish they would.  Then I just have to stay in bed until it's all over and my body decides to forgive me.  

So if I know about this pattern, why do I keep letting it happen?  

I'm starting to learn that I can't really do everything I think I can.  I'm fully capable of doing any of the projects I'm involved in, but I just don't have the energy to do all of them.  So I've decided to back off.  People say that you shouldn't make major life decisions when you are going through a rough time. But I believe that that is when you make the most honest decisions.  When I am in a great mood and have lots of energy, I think I am capable of conquering the world.  But really, I live more of my time in the sick/tired mode, so it makes sense to set up my life for what I can accomplish on my worst days.  

So starting today, I am breaking my pattern.  I'm lightening my load.  And I'm committing to slow down whenever I get the early warning signs, rather than waiting until I am so far gone that I have to stay in bed.  I'm also committing to better energy management, using the energy I have wisely, and taking the time to recharge.  

My Major Achievement

I have a Master's degree in Vocal Performance. A lot of blood, sweat, and tears went into that degree, and I am very proud of what I accomplished. But I'm even more proud of what I accomplished today.

Today I completed my instructor certification for Tai Chi for Arthritis, Seated Tai Chi, and Tai Chi for MS. In so many ways, this was a major achievement for me. As a child, I was a high academic achiever and excelled in music. Those were my things I did well. I don't know that anyone ever really said that I was bad at physical things, but they definitely were not where my strengths were focused. I was taller and heavier than most kids and although I was sufficiently coordinated enough to play the piano, that coordination didn't seem to transfer to the recess games of kick ball or jump rope. I played. I did OK, sometimes, but I was never really good at it. And a part of me needed to be really good, so I focused my time and energy on the things that I knew I was good at. I had a teacher that would sometimes let me stay in during recess to do other academic things. I loved it, and appreciate the fact that she helped me succeed there, but now, I kind of wish she had forced me to go out and play more.

I remember very distinctly our reading out loud sessions in my first grade class. Why do I remember them? Because I feared them. Every kid sat waiting for Jeannine to make a mistake and I was terrified that I would. From an adult perspective, I can see that the kids just wanted me to be more human, instead of super-human. If I made a mistake, it would be OK for them to make one too. But my child mind began to fear anything less than perfection.

Telling someone, "Do your best," is not always a wise idea. I knew that I had the potential to perform at a very high level. If I just pushed myself hard enough for long enough I could do it. But what people don't say enough is "Do the best you can under the present circumstances." In fact, it's easy for a teacher to see someone not really working to their full potential and push them harder without fully understanding the reasons why they are not working well, or how the words we use to push will actually affect the student. In fifth grade, we had a big project to do. I can't even remember exactly what the purpose was, but I remember the comment my teacher wrote. "You have met the requirements for an A, but I expected more from you." And my tender child's ego read that as 93% was not good enough. I was not good enough. Anything less than 100% and perfection was not good enough.

Do you have any idea how hard it is to actually achieve anything of importance when you are practically paralyzed with the fear of not being perfect? Somehow I managed to earn my Associate's, Bachelor's and Master's degrees in a field where people love to tell you how not perfect you are. In fact, we joke that the classes of your Freshman year as a music major are all about getting you to change your major to something else. And sadly, I'm not really sure it is a joke.

I chose to not pursue university positions where I could teach music majors because I didn't want to have to tell my students that they weren't good enough and they weren't doing enough. I choose to teach in a high school where the department philosophy is that every student, regardless of perceived talent, can learn and grow from choir and voice lessons. I had a wonderful teacher and mentor early on that taught people not voices. The person in front of her, and how they felt about themselves and about music was more important to her than that student's skill level. That was the kind of teacher I wanted to be. Of course I love teaching the really good kids that I can really get into the details with, but some of the most rewarding teaching I do is with students of "average" or "below average" talent. And yes, I put those terms in quotes for a reason. The more I study about how people learn, the more convinced I become that those that we label "average" or "below average" simply have not had the exposure, instruction, and practice time that the "stars" have had. We all learn at different rates and I really believe that with time and guidance, "average" people can do amazing things.

As one of my non-music courses for my undergraduate degree, I took a course called Sociology and Health. During that class we view Bill Moyers' "Healing and the Mind." I was fascinated. That series and the other things we discussed in that class opened my mind to new ways of thinking about health and healing. I especially loved the segment on Tai Chi and Chinese medicine. But I was a singer, hoping to be a voice instructor, so I filed away that interest in Tai Chi in my "sometime in the future" file. Over the years, I would see a class offered through Continuing Education or Community Education and would be interested, but the time was never convenient with my schedule, and I never seemed to have the money to do it.

Then one day, the stars aligned. I was having a slightly manic* day when I'm more likely to do the things I want without really worrying about how I am going to pay for it. It was time to do something for me. That day, I signed up for a Tai Chi class, mini-medical school (another great program I want to get back to) and made a massage appointment. I was very lucky to get into a class run by a teacher certified in the Dr. Paul Lam's Tai Chi for Health program. Slowly, through very similar methods to what I was using with my voice students, she helped me get over some of that fear of not being perfect. I was a morbidly obese, uncoordinated person who often forgets which way is right and which is left, who had issues with perfectionism, and social and performance anxiety, but it didn't matter. I could learn this.

I fell in love with Tai Chi, again. Not only did it make me feel better, I was also seeing all sorts of connections to what I was doing in the voice studio. I decided that I wanted to dig deeper. I wanted to become a Tai Chi teacher, so I could do more than just incorporate the principals into my voice teaching. I wanted to share all of the amazing things I was learning and feeling when I did Tai Chi.

I signed up for the teacher certification class...and the anxiety and perfectionism started creeping back in. Would I be good enough? Would my obesity work against me? Would they really certify someone that looks like I do to teach a health class? With my Fibromyalgia, I wasn't even sure I would be able to endure the two day class. But I knew that all those concerns were my old demons resurfacing. (They do that on occasion.) And I knew that I had beaten them before and could do it again.

I practiced and did everything I could to give myself the best possible chance of success. The night before, I packed my bag with two different sets of shoes in case one got uncomfortable, high protein snacks, water, gatorade, kleenex, Band-Aids, cough drops, and a variety of medications for any of my issues that might be problematic that day. I also told myself (and actually believed it too) that it was OK if I didn't get the certification and just got an attendance certificate instead. There was no pressing need for me to certify immediately, and improving my Tai Chi through this focused work was enough.

I got up early in the morning and gave myself more than twice the estimated travel time to arrive at the location. And then, I couldn't find the place where I was supposed to be. First, I expected the street to be further off the freeway than it was so I drove right past it. I am really familiar with the area, so I soon realized that I had gone too far and was not where I needed to be. No big deal. I turned around and headed back, and then had several other issues. By the time I got to class, I was a mess. I had given myself lots of time, so I was still early which gave me time to think about how I could excuse myself for a few minutes if I felt like I was going to have a melt down. (Crying is not a great way to introduce yourself to new people.) Now that I think about it, I realize that I could have used EB's nosebleed strategy. Why do I always forget the good stuff when I am stressed? (If you don't know EB, you'll have to ask me to explain this to you at another time.)

I'm not a quitter, and I've forced myself to do a lot of hard things. And sometimes, that's not a completely bad thing. It kept me from getting up and leaving, and having a good cry in the car before heading home. I was determined to take from this class whatever I could. And within the first few minutes of class, the instructor had done what all good teachers should do--he created a place where I felt safe and comfortable in learning. He immediately let us know that we needed to do what felt comfortable for our bodies. That might not seem like a big deal to someone else, but I felt a huge burden lifted. I could do what I could do and that was enough. I let of my worries and just did what I needed to do. And I tried not to freak out when we took turns leading or when I knew he was watching. And even then, the anxiety level was so much lower than singing for a voice jury or even some of the voice lessons I've had.

When I sing, I deal with anxiety by focusing on what I am trying to communicate. I focus on the beauty of the words and music. And sometimes, that allows me to let go enough to really create something wonderful. I'm no longer just singing, I'm becoming the song. At the end of the day today, we did a demo of what we had learned. I did fairly well even though that stupid voice in my head kept saying, "Get it right this time. They're watching," which of course always messes you up. The awesome part though was when it was time for the group learning Part II to do their demo. Others that knew the form were invited to do it with them. I was only doing the certification for the first part, but I know the second part as well. During that demo I had one of those experience where you are not "doing" Tai Chi, but "being" Tai Chi. I really felt it. And that would have been worth all the work of the class even if I hadn't received my certificate.

__________________

*Just to clarify, it has been determined that I am do not have bipolar disorder. Those seemingly manic days (or sometimes just hours) are really the days when my fibromyalgia is not causing fatigue or cognitive difficulties and my ADD brain gets super focused on something. The excitement and enthusiasm sometimes looks like a manic episode.

I should have seen this coming!

I've probably written this post before, or at least one very similar. And I'll probably write it at least a few more times before I finally quit being so stupid.

Fibromyalgia is my friend. It warns me when I'm doing too much and pushing myself too far. I've been majorly stressed since getting back to work after the holidays. There have just been too many things to do and not enough time and energy. To be honest, there have been a few good days here and there, but sometimes that's not such a good thing as I push myself even harder when I feel well.

Last week was pretty much a full fibromylagia flare up. The pain and tension were way up and the energy was way down. I'm not exactly sure how to describe it to someone that hasn't lived it. It's not just about being tired. Even fatigued doesn't quite describe it. I was so weak that a couple of times I wasn't sure I could walk. I did, but it took a lot of effort. Then there was Wednesday night while I was waiting for my takeout at Noodles. (No time to cook between work and meetings.) All I had to do was stand there and wait. I just about fell over and had to grab the wall to steady myself.

But my fibromylagia flare up isn't what this post is really about. The post is about me being stupid and not listening to my body's cries for rest. I'm on the planning committee for a major event that happens on Feb. 5. (Check out the website at www.voicesofhopemn.org). There were things that had to happen this week. I couldn't just put them off. So I did them. And because I failed to listen to my body's warnings, it had to take more drastic measures. It always does. When I don't listen to the pain and the fatigue and do something about it, my body resorts to its only other option in trying to get me to rest--it lets the germs take over.

Well, I got plenty of rest today because every time I got up to do something I felt like crap. The thing that really annoyed me was that when I was in bed, I didn't feel sick enough to just lie around wasting time. I did manage to accomplish a few things today, but none of the things that really needed to get done. I can probably allow myself most of Sunday to continue recovering, but once Monday hits, I have no choice. I have to work and get this stuff done. There are no times left in the schedule for make up lessons and I can't just refund the money since I really need it. The event will happen whether I get my stuff done or not, but the responsible part of me won't let me drop the ball at this point.

So either I get really healthy with my one more day of rest, or next weekend I'll be really, really sick. Why do I do this?

Looking Forward

Today has been a really good day. The sunrise was beautiful and for most of the day, the sun was shining and the sky was blue--a very positive way to start this new phase of my life. The last few days I have been impressed by the beauty of the sunrises, sunsets, and other small things. That is something that I want to continue for the rest of my life. I want to recognize and get excited by beauty every day.

I'm old enough and experienced enough to really understand now that I have limitless opportunities to start over. Sure, there are consequences when I can't maintain my goals, but even those can't stop me from trying again. I am no longer crushed by failures or depression. I know that the difficult times are only temporary. I will get through it and there is something better on the other side.

Fibromyalgia has really been a wonderful gift. It reminds me that I need to care for myself physically, mentally, and spiritually. It lets me know if I've missed too many days at the gym. It lets me know if I've overloaded my schedule with things for other people, leaving no time to take care of me. It reminds me that I can do anything, I just can't do everything right now. It also reminds me to review my personal goals and desires and not get caught up trying to do and be what everyone else wants me to be. Fibromyalgia is my friend, a friend that asks me, actually demands, that I take care of myself. And when I don't, it reminds me, first gently, and then not so gently, sometimes forcing me to abandon any other plans to get the rest I need.

I really do not know what my future will hold. Right now I have work that I love and people that I love to work with. I hope to continue with that as long as possible, but I also know that if I am forced to do something else, somewhere else, I can find a way to make it work and find happiness in that.

I am so much more at peace than I was several years ago, and I'm really hoping that that continues into my future. I've learned a lot about who I am and what I want. Now I'm trying to live that life with integrity--to say and do, not what the world wants me to say or do, but what I know in my heart is part of who I am.

Awhile back I posted on one of my blogs about the theme songs of my life. I've had some special songs that carried me through difficult times and inspired me. I couldn't think of anything that really fit where I am in my life now. Then a few weeks later, I heard my song. I've actually known it for several years, but it had always been just a song, not a contender for one of the theme songs of my life. So here it is, and this is how I hope to live the rest of my life.

"I Am What I Am" from La Cage aux Folles
I am what I am
I am my own special creation.
So come take a look,
Give me the hook or the ovation.
It's my world that I want to take a little pride in,
My world, and it's not a place I have to hide in.
Life's not worth a damn,
'Til you can say, "Hey world, I am what I am."
I am what I am,
I don't want praise, I don't want pity.
I bang my own drum,
Some think it's noise, I think it's pretty.
And so what, if I love each feather and each spangle,
Why not try to see things from a diff'rent angle?
Your life is a sham 'til you can shout out loud
I am what I am!
I am what I am
And what I am needs no excuses.
I deal my own deck
Sometimes the ace, sometimes the deuces.
There's one life, and there's no return and no deposit;
One life, so it's time to open up your closet.
Life's not worth a damn 'til you can say,
"Hey world, I am what I am!"

I'm proud of the things I've accomplished, even if I'm not where the rest of the world thinks I should be. I am in a place that makes me happy. I am doing work that is important and that I love. It's not about what they think about me. It's about what I think about me. And I think I have a wonderful future ahead of me. This is going to be a great year. Happy Birthday to me!

Looking Back

Tonight is my last night before a milestone birthday. I'll let you guess which one. Many people dread this birthday, and I've known some to actually become depressed over it, but I'm kind of excited. I'm looking at it as the beginning of the next phase of my life. But that's tomorrow's post.
Today, I want to write about where I've been, the things I've done, and the experiences that brought me to the place that I am today.

My mother says that I was born 50 (or she might have said 40). The point is, I was very much an adult in a little kid's body. My mother was very young when I was born. She also tells people that sometimes she was the mother and sometimes I was. I was often far more comfortable around adults than other kids my age. I did very well in school and was always one of the favorites, mostly I think because I always obeyed all the rules. OK, there were a few times I didn't, but they were so traumatic for me that I just went back to doing what I was told. I couldn't understand people that didn't follow the rules.

High school was tough for me. I did well academically, but emotionally, I was a mess. I very clearly remember times when I could hardly wait for school to be over so I could go home, and then at home, I could hardly wait for the time to go to school, so I could get out of that situation. Don't get me wrong. I didn't have a horrible home life. My family did the best the could. I just had no skills for dealing with conflict, and there was a lot of conflict in our home at that time. Often after school I would take a nap until dinner. I do think that part of it was that I was tired. I also think that part of it was that I was avoiding having to deal with people.

College provided some of the best experiences of my life, but also some of the worst. I met people that opened my eyes and mind to things I had never considered. I also saw hypocrisy that appalled me. I met people who claimed to believe certain things, but their actions seemed completely opposite. Still stuck in my "obey the rules" thinking, it really shook me.
During college, I also met people and had experiences that helped me to discover who I really am and what I believe. Through music, I learned how to trust and to be open. I can't always apply it in other areas, but this was a start.

All my years in school also took a toll mentally and physically. The depression was finally diagnosed, but it would be many years before I really understood it and gained some control over it. Depression, hormonal imbalances, allergies and fibromyalgia all played a part in making my life miserable during those years. I believe that the allergies and fibromyalgia were present then, even though it was much later that they were finally diagnosed and I began treatment for them. But even in those dark days, there were moments of brightness, when I felt joy. I had some amazing experiences and loved the intellectual challenge of all of that.

Ten years ago, I was in the middle of a DMA program in Vocal Performance when I realized I just couldn't do it any more. I couldn't keep doing what everyone else thought I should be doing. And I couldn't keep pushing myself to such extremes physically. I quit school and took every little part time job I could get to get by. And I think there were a few years that I actually pushed myself even harder than when I had been in school. But I also paid off a huge amount of debt. And I started to learn about what I wanted and who I was.

I still have a huge balance to pay off on my student loans, but over the last few years, I've cut back on work to take care of myself more physically, emotionally, and spiritually. I've learned to say no. There is still a lot of guilt, but it doesn't feel as bad as when I push my body too far. I've learned to listen to my body, and most of the time, I'm able to adjust things to get the rest and care I need so that things don't get really bad. I had even lost a lot of weight and was happy most of the time. When I started letting the world tell me how to live my life and spend my time, that started to slip. I've gained back all of the weight, plus a few pounds, and I'm about 50-50 for good days and bad days. But, now I know what I need to do, and I'm starting over again. I've completely cut out the foods that I know I can't manage with moderation. And I'm going to the gym more regularly again. I'm also taking time to just be still.

This is a good time in my life. I'm not a little kid. I'm not the trying to figure out what I want in life. I'm not trying to prove to the world how successful I can be. I'm finding what makes me happy, where I want to be with my life, and I care a lot less about what other people think of me. Yes, it's true that what the world thinks will never be completely removed from my mind, but it bothers me a lot less these days.

The Fibro Dilemmas

As I've mentioned before, I have fibromyalgia. One of the joys (not) of fibromylagia is the pain. And because my body hates pain, all the muscles in my body tighten in response to it. When the pain and tension reach a certain level, nausea and vomitting kick in too. Luckily I'm not there today, yet.

One of the best things to help the pain is exercise. Exercise releases endorphins which help kill the pain. Exercise also increases blood flow which helps to relax the muscles. However, there are some times when exercise is just too much and I end up feeling worse. Tonight I really want to go to the gym, but my leg is already bothering me and was hurting just walking. Do I go to the gym and fight through the first 30-40 minutes in pain? Yes, sometimes it takes that long for the good stuff to kick in. Or do I take a day off and rest?

Which brings me to the next dilemma--I need lots of rest and sleep, but if I stay in the same position too long, when I do move, there is a lot of stiffness and pain. Will going to bed early help me feel better tomorrow, or will too many hours in bed make me feel worse?

The hard part is that there isn't a formula for figuring out the right answers. Two situations that seem exactly the same could yield completely opposite results. That's the fun part of Fibromyalgia. Throw in the fact that with Fibro fog it is hard to think clearly, and it really becomes fun.

OK, enough complaining. Time for meds.

Sleep

Sleep. Re-charging. Healing. Escaping. A waste of time. A nuisance. A luxury. A necessity.

What does sleep mean to you? At different points in my life, it has meant different things.

In high school, when I was really depressed, it was both a response to the extreme fatigue accompanying the depression, and an escape from things I didn't want to deal with.

In college, sleep was for people that didn't have very much to accomplish--people that weren't concerned about their grades and weren't involved in too many things. I had a goal to get 8 hours of sleep for the 2 weeks before any major performance. I knew my body needed sleep, I just couldn't justify wasting the time, except when a performance was coming up. I remember many nights getting home from rehearsals after 10pm, doing homework, going to bed and then being down at the concert hall practing by 6am the next morning. That kind of schedule would kill me today.

I have fibromyalgia, a syndrome that is connected to poor sleep. If I don't get a sufficient amount of quality sleep, the pain, depression, fatigue, and other symptoms are much worse. This week I have gone to bed insanely early, leaving dishes in the sink and other housework undone, but I have felt so much better.

I also am an extremely creative dreamer and can often influence the direction my dreams take. I must admit, that sometimes I sleep because I really enjoy dreaming, even the really weird and bizarre dreams.

Here's a poem from John Fletcher that I absolutely love. I hope you do too.

Come, Sleep, and with thy sweet deceiving
Lock me in delight awhile;
Let some pleasing dream beguile
All my fancies; that from thence
I may feel an influence
All my powers of care bereaving.
Though but a shadow, but a sliding,
Let me know some little joy!
We that suffer long annoy
Are contented with a thought
Through an idle fancy wrought:
O let my joys have some abiding!

John Fletcher

Icebergs

Little children seem to have a fascination with the word "why". They want to know the why of everything, sometimes much to the annoyance of the adults they keep asking. But on the opposite extreme, sometimes as adults, we fail to ask the question "Why?" and respond only to the behaviors, actions, and situations that are currently present. We punish the offender or medicate to relieve symptoms rather than digging for the deeper meaning of the offense or pain. Don't get me wrong. I'm not opposed to punishment or pain meds. But, if that is as far as our interaction goes, we are not getting to the root of the problem. Or as I learned at the autism workshop, we are just addressing the tip of the iceberg.

As I'm sure you know, the part of the iceberg that is visible above the water is usually a very small percentage of the full iceberg. Although what is above the water line is dangerous, it is what is below the water line that is the real iceberg and because we cannot see it, it poses a greater risk.

I wish I could just reprint these illustrations for you, but I will do my best to describe them. When looking at the iceberg that is called "Tantrums", we see that the specific behaviors lying above the water line are screams without apparent cause, self-injurious, and destroys toys. If we respond only to those behaviors that we see, noone is going to be happy, and nothing will improve. If we look at and work with the underlying deficits, that part of the tantrums that lies below the water line of our iceberg, we have a chance of changing things for the better. Those underlying deficits are unable to communicate needs, emotional inconsistency, poor understanding of the situation, strong need for closure or sameness and low frustration tolerance. To be honest, if I were a parent dealing just with the specific behaviors described here, I would probably be an abusive parent. But looking at the underlying causes helps me to love this child more and look for ways to help him or her.

Let's move this concept beyond autism. Take for example the social/political situation in the middle east. It's very easy to condemn those horrible people and what they are doing to their neighbors based solely on religious differences, but when you take a look at the last few thousand years of history in that region, or even the last hundred years, the lines between the good guys and the bad guys become blurred. You start to understand why they feel wronged and why they feel entitled to the land and the government of the people.

And what about our health? How many of us go to the doctor because we want him/her to fix what is wrong, meaning make the pain or disease go away? Do we take the time and interest to ask why it may have occurred in the first place? Western medicine is improving in this area, but I think we have a long way to go.

I love my fibromyalgia and I bet you won't find many people that will say that. The reason I love it is because my body is constantly reminding me of what it needs. If I treat it with love and compassion, it is much kinder to me. It's very easy to treat the pain with meds, and the fatigue with sugar and caffeine, but it is a short term fix, and in the long run, makes things worse instead of better. When I am in pain, I need to look at why. Is my stress level too high? Have I missed too many workouts? (Endorphins are amazing.) Have I consumed too much sugar and/or caffeine or even carbohydrates in general? Although they help with the fatigue, they make the pain and inflammation much worse. If I'm tired or not sleeping well, I need to look at why? Is it the rebound from the sugar and caffeine? Have I missed my daily deep breathing exercises? Is my bed in dire need of replacement? The answer to that last one is a definite yes.

Finally, I need to be asking the question "Why?" more as I work with my students. It used to create great frustration when my very talented students wouldn't practice, but as I've come to understand some of the their reasons, it bothers me less. Rather than the lecture on how they'll never improve if they don't spend hours practicing, I now try to help them find ways to fit in whatever they can in their lives and we're all happier.

It is also easy to treat a vocal "symptom" without ever addressing the actual cause. Here's my favorite example and one that I'm constantly dealing with with my students. The [i] vowel can be a singer's best friend or their worst enemy. For those of you not familiar with IPA, I'm referring to the ee sound like in the word cheese. In fact, think of that horrible bright smiley word that photographers have you say to make you smile and you'll understand why choir directors hate this vowel. As it is normally spoken, it is very bright, shallow, and horizontal. If sung in the same manner, its sound jumps out of the texture of the music and doesn't blend well at all. Some choir directors will have students change all [i] sounds to [I] as in the word skin. Others use other ways to manipulate the sound of the group vowel. But what happens too often is that when kids come to me, I discover that their perception of the fix has totally destroyed anything even closely related to the [i] vowel. Often the kids are pulling their tongues way back. Yes, it does take the piercing sound out, but now the vowel jumps out of the texture in the other direction. You have beautiful clear sound, and then a really muffled swallowed [i] vowel breaks that line. In the choir teacher's defense, they cannot check how every student is interpretting their instructions. They just hear the overall result of the choir. When the choir [i] is what they want to hear, they assume that the individuals are creating it correctly.

The true and beautiful [i] sound is not achieved by changing the vowel or by pulling it back. It is achieved through making it vertical and releasing the tension in the jaw and tongue. That [i] is wonderfully resonant AND lines up with everything around it.

When a student seems to not even try when given new instructions, it's easy to decide that they don't care, that they are just oppositional by nature, or as one teacher decided about me, that there is just something wrong with the student. To be honest, there was something wrong, several somethings actually, but what was most damaging about her assessment was that it seemed to imply that I was hopelessly flawed and couldn't be fixed. It's easy to assign labels based on behavior. It takes more work, more time and more energy to find the underlying causes beneath those behaviors.

Although I started out this blog with icebergs as big, scary dangers, I think we also can use that metaphor for good things too. Is there something under that ice we see as good behavior, or is it just floating on the water with no real anchor beneath?

I think that one of the reasons that many people avoid organized religion is because of all the do's and don'ts. At some points in our development, both as cultures and individuals, we need list of behaviors that are and are not appropriate. Without something like that, civilization crumbles. However, getting to Heaven is not just about doing or not doing certain things. Many, many years ago, the final line to the Mormon children's song "I am a Child of God" read, "teach me all that I must know to live with him someday." At the recommendation of the prophet, the line was changed to "teach me all that I must do to live with him someday, " indicating that knowing the right things is not enough; we must do them. A former voice teacher told me something to the effect of knowing and not doing is the same as not knowing. Yes, doing is important. Knowing and doing are important, but I would suggest that even that is not enough. It's a great first step, but we must also understanding and become.

When Christ was asked about the most important commandment, he replied that there were two--Love god, and love your neighbors. Joseph Smith said, "teach them correct principles and they will govern themselves." Christ's love and Joseph Smith's principles are the iceberg. The do's and don'ts are the results, the visible portions above the waterline, or a least they should be. The bigger more important part is what is under (and behind and motivating) those behaviors. "Teach me all that I must be and understand" doesn't fit in the music, but I want to make sure that it fits in my life.

Differences and Similarities

There are 3 main areas of concern when looking at autism and autism spectrum disorders: Social Interaction, Communication, and Repetitive Behaviors/Sensory Issues. As a mentioned earlier, as I attended these workshops, I was not only struck by the differences, but also how similar I am to people on the autism spectrum. A few years ago, I had some in depth psychological testing and was shocked when after the initial interview the Dr. had me tested for Asperger's. I had worked with kids with this and didn't really see any similarities in my situation. The more I learn about autism and related disorders, the more I understand his reasons for exploring this area. (By the way, I did not have the history, or enough issues to warrant an Asperger's diagnosis.)

At the school workshop, they spent quite a bit of time with the early childhood social interaction difficulties. Because I'm not a developing infant or toddler, nor do I work with them, I'm going to skip over that. One item that continues to be a problem through the teenage years, is the inability to read facial expressions and understanding what other people are feeling. I've always felt that I was pretty good at this. In fact, sometimes I feel what others feel too strongly. But thinking about facial expressions got me thinking about how I interpret the facial expression of my students on the autism spectrum. When most kids look bored and won't make eye contact, it means they are bored and/or not paying attention. I need to remember that autism spectrum kids aren't going to give me the same physical and facial feedback, but they still might be engaged. On a humorous note, one of the slides they showed that they use to test young children for autism is a smiley face picture and 4 candies with the question, "Which chocolate will Charlie take?" The idea is that the kids see "Charlie's" eyes looking up toward the Milky Way bar. Normal kids immediately know that that is the one he wants. Kids with autism can't figure it out. I hadn't figured it out by the time they explained it, because I was stuck on the fact that one of the candies was "Smarties" and those are not chocolate. I was so thrown by this and the question about chocolate that I hadn't even looked at Charlie's eyes.

As they discussed social difficulties for older students, I did see some similarities in my own life, but my diagnosis is social anxiety. They talked about how if asked to work on a group project, kids on the autism spectrum have trouble participating. They either take over the whole thing, or don't do anything. That is so me. Although as a teacher I can see the benefits of group work, as a student I despised it. I can be a leader or a follower, but I'm just now at this point in my life learning how to be a team player, an equal with those around me.

Again, related to my social anxiety, I understand the person with autism that has difficulty building and maintaining relationships. It's all about knowing how to play the game, and people with social anxiety or autism spectrum disorders don't understand all the rules of the game. It doesn't mean we can't have relationships, but it does mean that it's harder than the difficulty the rest of the world has with relationships.

In the area of communication/comprehension, the area that fascinated me with regards to my own experience was echolalic speech. Some kids can parrot back impressive information, but don't really understand the information or how to use it in a different context. I have an excellent memory for factual memorization and therefore graduated at the top of my class. I don't know that I would do as well in today's education system where so much is about applying the knowledge. I can give you the facts, but have more difficulty in applying it to new situations. That's why word problems were so tough for me in math. The funny part here is that I really do feel like I am a good voice teacher and teaching voice is all about applying the facts to different situations since no two students have the same issues or respond in the same ways.

They talked a lot about how concrete autism spectrum kids are in their communication. They don't understand metaphor, sarcasm, etc. Metaphors, imagery, and sarcasm are my life, although I'm trying to cut back on the sarcasm. This is one area where I have no understanding of what these kids are experiencing. Metaphors and imagery is how I take the meaningless facts and make them mean something. So much of singing is seeing beyond the the words written on the page. I don't know how to talk interpretation without asking, "What do you think this imagery means? What do you think the character feels?" Yes, I know that these kids feel, but how do I go about getting them to understand what a character is feeling? And when I put it that way, I realize that it's the same as with any other kid--you have to relate it to something they do understand. I still don't know what to do though about kids that don't get metaphors and imagery.

Believe it or not, social interaction and communication were the two areas that I didn't have much in common with those on the autism spectrum. Sensory issues, however, are very easy for me to understand. I have fibromyalgia. There are many theories about why it develops and what it is, but basically it boils down to hypersensitivity. If my door is open at night, I will sometime wake up when the fridge motor kicks on. Sometimes the sound of the fridge running is more sound than my body wants to deal with. Sounds that are normal to the rest of the world are physically painful to me. I never go to the pepfests at school. I'm all about school spirit, but all those people and all that noise in one room is just too much for me. Socks drive me nuts if the seams aren't lined up the right way, but even worse, is not wearing socks. At the workshop, they mentioned that kids with autism often won't wear socks or shoes because they don't like how they feel. Socks feel better for me than all the other stuff I feel if they are not there. They also said autism kids are sometimes tip toe walkers. When barefoot, I actually walk mostly on my heals trying to keep my toes off the floor.

Other difficulties related to autism that I also understand all too well:

• Inflexibility. See the world in very "black and white" terms; concrete understanding of rules. --
• I'm getting much better at this, but I used to be very rule bound, rigid and inflexible about many things.
  
• Easily feel overwhelmed or anxious.
  
• Unexpected changes or events cause extreme anxiety--I don't usually have the melt downs that happen with autism kids when they encounter unexpected changes, but I do experience a lot of internal anxiety. Again, I'm learning to deal with this and am much better than I was even 10 years ago.

My main point in all of this, was not to tell you more than you probably wanted to know about my life. The point is, if all we see is the differences, it becomes "them" and "us". (Black and white thinking, by the way.) We can't understand people and we can't love them until we see that there are a lot of ways that we are very similar.

At the neurology lecture these were two bullet points on a slide about ADHD:

• Kids with ADHD need structure, firm limits, and lots of positive reinforcement.
  
• What if an entire school could have that kind of approach?
  

I am for whatever programs we can have in our schools to help kids with ASD or ADHD succeed. However, I also see the difficulty my choir director colleagues have in teaching to the special needs of each of the students when there are, for example, 90 Freshmen girls in the same room. My situation is different. I work mostly one on one with the kids. I'm in the perfect position to give them instruction tailored to the way they learn. Although it was pushed to the bottom of a long to do list, I'm still very interested in doing some kind of a formal study on voice instruction for students on the autism spectrum disorder.

Listening to my body

I wish my brain and my body would function well on the same days. The last few days have been very productive in terms of getting things ready for school. I've been excited about things and have remained really focused while working. The problem is, that I've been so focused on my work that I haven't been listening to my body trying to tell me that I need to take a break. The last 2 nights I've literally been ill by the time I got home and ended up going to bed really early.

One of the most difficult challenges for me in dealing with fibromyalgia is pacing. On the bad days, you feel so awful that you don't get much done beyond what is absolutely required, and some days you can't do that. So when you have a good day, the tendency is to want to catch up. I feel fine so why shouldn't I do a,b, and c. And maybe d-p as well. Overdoing leads to more bad days. I know that, so why can't I do something about it.

My body is my friend. It does give me subtle warnings telling me when to back off and relax. If I do that, life is good. If I quit listening to my body, it has to yell louder and do whatever it can to get my attention.

One of my goals for this school year is to listen to my body more. I need to set limits on what I can do, even on those things I love to do. I've already scheduled the last lessons of the day for the school year. I'm not taking any students later than the ones that are already on the schedule. It's a start.

I'm looking forward to this long weekend. Yes, I have a lot to do, but nothing I have to do on someone else's timetable, so I plan to take lots of breaks.