Speak up!

One of my favorite scenes in the movie, "The King's Speech", is during a speech therapy session where the King starts swearing as he practices for the speech he has to give.  This pretty well captures my feelings about public speaking.

Even without a speech impediment, I was a quiet, shy child who would rather eat bugs than have to give a book report in front of the class. I was in a school play, once.  Well, twice, if you count my first role as a tree.  Trees don't talk. In my only speaking role, I was a bad angel and my one line consisted of three words, "Keep the money".  That the main character decided to listen to the good angel instead, may have had something to do with the fact that my lines could not be heard if you were more than three feet away from me. I came to dread the inevitable words from my teachers, my parents, and even my friends:  "Speak up!  We can't hear you!"  That's easier said than done.

As an adult, I worked hard to improve in this area, though I never was able to project well, because leading parent meetings and giving educational talks was a required part of my job. I eventually came to enjoy speaking to groups, as long as I was speaking about something that I was passionately interested in.

That changed when Parkinson's disease became a part of my life.  Even before I was diagnosed, I started having more difficulty with speaking.  My voice became quieter and I started stumbling over my words, sometimes freezing in the same way I freeze when I move.  This was my first indication that I needed to leave my teaching job.  Doing this once during a parent talk was embarrassing enough as I would totally forget what I had been talking about.  I would do this repeatedly.  I didn't want the parents to think I was totally stupid.  Before that year was out, I let my colleagues know that I would not speak to groups at evening meetings. 

Once I was diagnosed and my medications stabilized, things got better.  I don't freeze as often either in speech or while walking. As with most everything else with my Parkinson's, evenings are always off times. I am not articulate in the evenings. Difficulty with speech is also one of the symptoms that immediately comes back as soon as my meds begin to wear off at any time of the day.

I'm not teaching anymore and I'm not required to speak in front of groups.  My friends and family understand that it takes time for me to find the words I need and they are usually patient with me.  So, why, as the King would say, should I give a shit about how I speak?

There's a good reason to care about this.  My family and friends might be used to me but I've found that people respond to me very differently depending on how articulate I am at any one moment.  That includes my doctors, even my neurologists who specialize in seeing people with Parkinson's disease.  If I am having a good day and speaking well, my doctors are more likely to take me seriously and treat me as an intelligent adult.  If my speech is slurring a bit or if I stumble for words, it seems to me that my doctors are more patronizing. 

We tend to equate articulate speech with intelligence.  This is one reason I find writing to be so therapeutic.  I don't slur my words when I write, or at least when I type.  My handwriting I can't guarentee.  If I stumble over what I want to say next, there isn't anyone around to get impatient with me.  I can take all the time I need.  When my first neurologist started reading my articles, she suddenly began relating to me more as a person than a patient.  She treated me as an intelligent adult.  I'm not saying that she treated me badly before; it's just that when time is limited, we all tend to go with our immediate reactions and judgements.  I don't know many doctors who have the time to really get to know all of their patients. 

At the end of the movie, the King has given his speech over the radio, with his speech therapist standing nearby.  He does well, stumbling a bit at the beginning but ultimately delivering his message in a heartfelt and beautiful way.  Afterward, his therapist looks at him and tells him that he still stumbled over the w's. 

"That's okay", the King says, "I had to throw in a couple of them so they'd know it was me."

If a king can do this, I guess I won't worry too much about stumbling over my words from time to time.  Maybe one day, I'll take advantage of a speech study for people with Parkinson's disease. Until then, at least when I stumble, you'll all know it's still me.

Never Put Birthday Candles on Lasagna

It’s a tradition in our house, on the night before a birthday, to set the table beautifully, with nice china plates and our best cups or glasses.  We have a candle or flowers as a centerpiece, and a birthday card waiting on the table.  Sometimes we even drink our orange juice out of wine glasses.  Birthdays are important days and need to be celebrated.

Patrick’s birthday was on Saturday, the day after the end of the first week back at school.

As a teacher, whenever we came back to school after a holiday, it was an adjustment.  Teaching takes an enormous amount of energy, which if fine, once you’ve gotten used to it, but until then, tired doesn’t even begin to describe how you feel.  At least, that’s how it was for me.  One of my colleagues tells me that I should never say I’m tired.  That’s too negative.  I should instead say, “I’m relaxed”.  It’s a way to turn it into something positive, he says. 

I don’t buy it.  When I’m tired, I’m not relaxed.  My Parkinson’s nervous system takes over and my muscles have their own agenda.  They don’t consult me to see what I want to do because they know I’m going to want to sleep, or at least rest.  That’s not in their plan.  When my body is tired, I don’t have the strength to stop my muscles from doing whatever they’re going to do.  My medications don’t work when I’m tired, either.  I have no choice but to go with the flow… or in my case, the jerks, shaking, and occasional collapsing onto the floor.

School started again and I’m teaching an art class every afternoon.  By the time Saturday and Patrick’s birthday came, I was…tired.  The table was not set nicely.  There was no birthday card.  We had one present for him, but the book we had ordered hadn’t arrived yet.  I felt awful.  What a terrible mother I was to neglect my son’s birthday celebration.  So what if I was tired. 

I decided I would make lasagna and bake a nice cake. 

At noon, I was gathering ingredients together.  That’s when John and Coco and the baby came to bring Patrick’s birthday present, have lunch, and visit for awhile.  I hope they didn’t think I was being rude.  I was too tired to talk much.  I hardly even noticed when Mattheus learned how to open the glass door of the book case where all our breakable knickknacks are kept.   I did enjoy their visit, however wonky I was feeling.  It’s always good to see them. 

By the time they left, I knew I wouldn’t have the energy to make lasagna and cake.  We decided to hold off baking the cake till the next day when we would have a big family gathering with the Reinhart clan.  Then everyone could celebrate together.  It made sense.   I still felt awful but at least I could make a nice big gluten free lasagna; a good birthday treat for Patrick.

When I helped with the afterschool program, I always celebrated birthdays with the children.  However, because I rarely had warning of when a birthday was coming up, I learned how to improvise.  We had candles on muffins, cookies, and even once on a rice cake that had a thick layer of cream cheese spread on it.  When you sing “Happy Birthday”, there must be candles.

This is why we ended up with candles on the lasagna.  At the time it seemed like a good idea.

I served Patrick first, of course.  He was the birthday kid.  I put the candles on his generous helping of lasagna and set it at his place.  It looked wonderful!  Then I served the rest of the family and we sat at the table.  I had just instructed everyone that we were about to light the birthday candles and sing to Patrick, when I saw that he was taking the candles off and putting them on his plate. 

“Why are you doing that?” I asked.

Patrick picked up a candle.  “They’re melting,” he said, and I could see the rest of them slowly sinking into the very hot lasagna. 

In the end, Patrick lit one candle and held it while we sang.  He was gracious about it, as he is with most things, and even ate the little bit of wax along with his meal.  He didn’t have much choice about that.  Today, Sunday, we’ll have leftover lasagna with John and Coco and Mattheus.  Our big family gathering has been postponed due to the snow but we’ll celebrate here.  We’ll even have a cake.  It’s done already and cooling in the kitchen. 

I think, however, I’ll wait awhile before I put the candles on top.

Happy birthday Patrick!!

New Year’s Resolution

Dear God,

For the New Year, I resolve to believe in you.  I don’t say this lightly as there have been many things I have struggled to understand over the past few years.  During this time, I have assured myself that, if you do exist, you wouldn’t mind my struggling and questioning.  If I had died at a time when I refused to acknowledge you, I know you would not have held this against me, either.  If I was asked to believe in a god who was that mean spirited, I would refuse and spend my days in atheistic bliss.

I don’t promise to understand you.  Many people have tried to teach me about you and it gets confusing.  Some people tell me you are one god.  I can see this.  Most of the world is so beautiful that it’s hard to imagine that it could have been created by committee.  If there were many gods, I’m sure they wouldn’t agree on everything.  It would have taken longer than seven days.  In fact, we’d still be waiting for you to finish the landscape and create us.  I don’t count out the possibility of many gods, however, especially when I look at certain animals, like the daubentonia madagascariensis or the proboscis monkey or even the alpaca, which, when shorn, looks like a cross between a camel and a Dr. Suess drawing.  Either there was a lot of compromising going on or one of you has a bizarre sense of humor. 

I prefer to let you be who you are and I won’t worry about the details.    

Some say you have all sorts of rules that we need to follow.  Of course, I have yet to find those who agree on what those rules are.  There are people who insist that you’re interested in our politics and we need to vote for the one YOU want in office – another rule.  I don’t get this at all.  Why would you go to the bother of creating intelligent beings if you don’t expect us to think?  I can’t imagine why you’d be interested in politics, anyway.  Your have enough to do, just keeping the universe in order.  I suspect you have more trust in us than we have in ourselves.    

I don’t promise to be religious.  Church ceremonies can be beautiful, but I don’t want to be a part of an organized religion.  They think they know exactly who you are and that makes me nervous.  When I look at history, I see that there has been too much violence in this world that is done in the name of religion.  Much of what is done in churches doesn’t seem to have anything at all to do with you.

I will get angry with you.  I try to believe that everything has a purpose and that the purpose is ultimately for our good, regardless of what it seems at the time.  I can’t always do this.  You’ll have to give me a little leeway here.  Karma and reincarnation make sense to me, most of the time.  I’ll get angry when things seem to go overboard and people start to suffer needlessly, as least in my opinion.  I think you’d prefer I get angry rather than wishy-washy. 

Just because I’ve decided to believe in you doesn’t mean I need to talk about you.  When I was young and believed in you for the first time, I talked about you a lot.  That’s like any friendship, isn’t it?  I still do that whenever I make a new friend.  It undoubtedly drives my family nuts, but there’s something magical that happens and it’s impossible not to share that joy.  You and I, however, have had a relationship for many years already.  It’s a different kind of relationship now, quieter and more realistic.  There’s no need to talk about it all the time.  I won’t brag about what you do, either, or expect you to help with all the little things in my life.  You’ve created me with a heart and hands, as well as brains.  I can struggle and figure some things out for myself. 

It’s the least I can do.

Happy New Year,

terri

Christmas Boogie

Christmas traditions are important.  We have many family traditions that we need to teach our grandson.  It’s our job as grandparents.  I try to discuss this with him, but he’s not too interested.  He just wants to play fetch.  Mattheus doesn’t play catch, he wants me to throw the ball so he can crawl to it as fast as he can, grab the ball with his hand, and bring it back to me, grinning.  Some children grow up to be doctors or lawyers or teachers.  Our grandson is growing up to be a retriever.

Baking is one of my most cherished holiday traditions and I was making my annual Christmas truffles the other night.  Before I could finish them, I needed to make a trip to the grocery store.  I wanted these to be good.  So, off I went to purchase dark chocolate, more cream cheese, and almond extract. 

It was 7 pm and I should have known better.  Attempting to go anywhere and accomplish anything after dinner is not the best idea.  No matter how the rest of the day has gone and no matter how well my meds are working, I do not function in the evenings.  I was determined to have truffles done that night, however, and I wasn’t going to let anything stop me. 

I made it to the store and took myself to the baking aisle.  The choices were overwhelming.  What should I get?  I stared, glassy eyed at several shelves filled with different types of chocolate.  After an hour or so, I decided to get two each of the Hershey’s special dark, premium, ultimate, incredible chocolate chunks and the Ghirardelli’s unique 63.725% cacao, gourmet, we want you to know we are chocolate experts, extra large chocolate chips, just to make sure I wouldn’t run out.  Now I only had to pick up the cream cheese and almond extract and I could go home.  No problem. 

I said No problem. 

I was stuck.  My brain made several attempts to send communication to my feet, but all were returned with the following note from my central nervous system:  “I'm afraid I wasn't able to deliver your message to the following addresses.  This is a permanent error; I've given up. Sorry it didn't work out.” 

A service dog would have been helpful.  There are dogs being trained to help people with Parkinson’s disease when they find themselves in just this situation.  The dog would have come close and put its paw on my foot.  This gives a cue to the foot somehow.  Maybe they act as a canine courier to make sure the messages get delivered.  These dogs are also trained to help counterbalance when their owners start to stumble.  I’ve heard that Great Danes are good for this purpose. 

I didn’t have a dog with me so I had to try a different tactic. 

Music.

Of course!  The store was playing Christmas music.  Using movement methods learned in Yoga class and old high school socials, I started to listen and move to the music.  The hope was that if my upper body was moving, the lower body would soon start to worry that it was missing something and decide to catch up.  Ignoring the other customers in the baking aisle, I started to jive.  Sure enough, the feet suddenly started paying attention.   Great!  I could move as long as I was dancing through the store. 

I danced to the spices and grooved my way over to the dairy section.  On my way to the checkout, I stopped briefly to see what bargains were in the sale bin.  I nearly panicked then because my feet froze once more.  I also realized that the music had stopped.  Someone must have reported an odd customer dancing to “Have Yourself a Merry Little Christmas” and the store decided to take precautions.   I would have to provide my own music and sing as well as dance, if I was to get home before morning. 

I tried several songs before hitting the right one.  “I’m dreaming of a White Christmas” was definitely too slow.  “The Holly and the Ivy” would have been just right, but I couldn’t remember all the words.  I settled for a simple rendition of “Jingle Bells” and went dashing through the store.  I paid for the groceries as I hit the chorus and waved aside help to the car with an “Oh what fun it is to ride in a one horse open sleigh”.

When I finally made it home, I was faced with a new challenge.  The messages being sent to my limbs were obviously getting jumbled en route because I found myself walking places to which I had no intention of going, like straight into the wall.  Then ricocheting off the wall, I sidestepped to the counter, where I bumped and propelled myself backwards into the doorway.  The Great Dane would have been helpful here, if he could have figured out where I was going to go next. 

I’m not planning on getting a dog.  Not in the near future anyway.  Maybe I’ll just have to wait till Mattheus is a little bit older and taller.  He might not mind helping his grandma out a little.  He could come close and step on my foot for me.  If he continues to be as tall for his age as he is now, he would eventually be able to be my counterbalance when I stumble. 

Or else we can just play fetch. 



Being Thankful

‘Tis Thanksgiving again and it’s time to be thankful for things like turkeys and cherry pies and all the lovely people in our lives.  There are so many things to be thankful for, I hardly know where to begin.

First of all, I am thankful I don’t deliver newspapers.  The newspaper with all the ads for Black Friday had to be hoisted onto a dolly before I could wheel it into the house.  I am also grateful I am not in retail sales.  Imagine trying to recover from the holiday and be polite to customers at the same time.

I’m thankful that I am not teaching anymore, as much as I miss it most of the time.  This is the time of year for parent/teacher conferences. 

I’m grateful that my husband and kids slept in and I got a couple of hours to myself this morning.

I’m thankful that lima beans are not a part of a traditional Thanksgiving dinner.

I’m thankful for long walks with Chris, mornings with Mattheus, and Saturday night dinners with the whole family. 

I’m grateful for scrabble games, youtube videos, crazy art projects, and my studio.  I’m grateful that Chris puts up with my crazy art projects.  I know he’s thankful I have a studio where I can put most of them.  I’m also grateful for the modern medicine that makes it possible for me to do my artsy stuff.

I’m grateful for long talks with John and Coco, thrift store shopping excursions with Emma and Patrick, and quiet moments, sitting on the tailgate of the pickup and chatting with Chris.

I’m thankful for the alarm on my cell phone, which alerts me to take my medicine on time, and is the signal for Chris and me to spend a moment dancing together.  The alarm plays music.

I’m grateful for our school community, which has been our second home for more than twenty years.  I'm also grateful for email and Facebook, which have made it easier for me to connect and reconnect with family and friends.

I’m thankful for our garden and all the animals and birds, even Napoleon, who doesn’t crow too early in the morning. 

I’m grateful for my friends, too many to list!  I could say much more.  I’ll leave it that I am so, so lucky to have such wonderful, beautiful friends.

I’m also so, so lucky to have John, Coco, Teo, Patrick, and Emma.  I’m a happy mom and grandmom. 

Last, but by all means, not least, I am so grateful for Chris.  Again, I could say much more.  You, dear Chris, are my anchor, my partner, and my favorite person in the whole wide world.  I’d do almost anything for you.

I’d even serve lima beans for dinner.