If you can't stand the heat, stay away from mom

The Fantastic Four got it wrong.  The Human Torch should have been a woman - over 50.  I knew my hot flashes were intense but I didn't realize just how bad they had become till the kids pulled out the marshmallows and sticks.  No need for a campfire, they'll just find mom. 

After my hysterectomy, my doctor told me that if I didn't have any hot flashes in the first two months after the surgery, I probably wouldn't have them at all.  I was listening intently, as was my whole body.  My body often likes to play practical jokes on me.  It likes to make me do things that I don't have any intention of doing, like suddenly walking backwards or twisting up like a pretzel.  I should have known it wouldn't let an opportunity like this pass by.

Two months after my hysterectomy, I was celebrating, thrilled to know that I had made it through without any menopause symptoms at all.  None, that is, except for the ease at which I could cry while watching old British comedies or reading the back of cereal boxes.  All the while I was celebrating, however, my body was laughing in a most sinister way.  If you are over 50, you know that laugh from the old cartoons with Muttley the dog.  Had I not been celebrating, I might have remembered that the day was not over yet.  The two months would be over at midnight.  What a wonderful practical joke this would be!

At exactly 11:59 pm, my body suddenly burst into flame.  I now know what it feels like to spontaneously combust.  It was like having a fever for three days, all compacted into two minutes.  I threw the covers off me and started to gasp for air.  Within a few seconds, the cold air hit my sweaty body, bringing a chill that made me shiver uncontrollably.  I frantically pulled all the blankets around me, leaving my husband in the cold, and snuggled to warm up.  As soon as I was almost comfortable, it happened again.  My inner blowtorch reignited, forcing me to send the blankets flying off across the bed.  This was repeated many times.

The fact that my husband did not leave me right then convinced me that he really does love me.  

The next morning, I took a deep breath and decided that I was not going to let a few hot flashes get me down.  It's a natural process, I told myself, and so there must be some physiological benefit to them.  After all, fevers can be very beneficial in ridding the body of toxins.  Maybe hot flashes do this, too, sort of like "flash pasteurization". 

I wonder if it's also part of the natural process to want to bite your family.

My husband deserves a special award for somehow managing to survive in a household with three females - one going through puberty, one going through menopause, and one expecting a baby.  When he made the decision to retire in the middle of all this, the family should have given him a plaque proclaiming him "Masochist of the Year".  Who in their right mind would decide to stay home at a time when the clouds of hormones enveloping their dear ones were thicker than his pipe tobacco smoke? 

Hot flashes wouldn't be so bad if we could only control them.  Just think of the power we would wield if only we could say "Flame on!" or "Flame off!"  Not only would we save money on heating our house, we would also be assured that people would take us seriously, especially if they wanted to keep their eyebrows. 

It's been almost 8 months since the hot flashes started.  I'm okay.  For the most part, I've gotten used to them and only on rare occasions do I growl at my family.  They've learned when to stay away from me.  It's a lot, though.  It's not easy being female, what with menstrual cramps, childbirth, and menopause.  We've got it rough, but then, so do most superheroes.

Excuse me, I have to go.  The kids are getting out the marshmallows again.



Multiple Choice

I don’t like multiple choice questions, unless it’s a math test.  If it’s a multiple choice math test, then I have a somewhat reasonable chance of maybe, possibly getting something right. 

In other areas, Multiple Choice just doesn’t cut it.  The other day, I was filling out an information sheet about my studio.  I was asked to define my Studio.  It was Multiple Choice and the possible answers were as follows:

a)  Business

b)  Entertainment and the arts

c)  Geography

d)  Technology

e)  Music

f)   Organization

How do I answer this?  My studio doesn’t fit neatly into any of these categories.  Sometimes the studio is for creating art; sometimes it is for creating music.  In the evenings, it provides a quiet get away for my son.  It’s also a place for my daughter to listen to old LPs while she draws.  It’s my sewing room and a quiet place to write or have a phone conversation.  I try to keep it organized but I don’t think that qualifies it to be an Organization.

The studio is a gentle place where friends join me to create art.  A lot of art and craft work does happen in the studio.  We’ve made brooms, baskets, books, more books, dolls, and elves, among other things.  Sometimes our focus is the work, sometimes it is an excuse to come and sit with a cup of tea and talk.  I have time to listen.

Wouldn’t it be nice if everything in our lives would fit into neat categories? 

I found myself thinking of this yesterday after yet another visit to one of those delightful medical professionals I see regularly.  The doctor looked at my hands.  He ordered an x-ray then explained that I have the beginnings of osteoarthritis in my hands, carpal tunnel syndrome, and something called “Trigger Finger”.  I will go for some occupational therapy but the doctor was honest with me.  He said that the pain may go away for brief periods but it will most likely always come back.  It seems I have overused my hands over the years. 

I was shocked!  I couldn’t believe that thirty years of knitting, sewing, woodworking, broom making, book binding, felting, doll making, and paper quilting, could possibly have taxed my hands to this point.  I mean, really.  I thought my hands were just being belligerent. I just needed to show them who’s boss. 

After repeated attempts at disciplining my hands and continuing with all my craft work, I now have to concede they just aren’t up to the task.  My hands complain loudly when I knit or handsew and my thumbs have learned how to “just say no”.  You wouldn’t believe how useful it is to have opposable thumbs that actually work.  I have to admit that my crafting days, at least the days of spending hours working on crafts and accomplishing a lot, are over. 

What do I do now?

a)  swear

b)  spend time, money, and energy trying to find a cure

c)  stop all craft work and spend my time watching soap operas

d)  figure out what I can still do and redefine who I am

Choice b) is out.  I don’t have the time, money or energy to put into trying all sorts of possible alternative therapies.  I been there, done that.  I ran choice c) by my family and they collapsed in giggles on the floor.  After years of watching their mother having a minimum of 5 projects going on at any one time, they know that I am unable to watch TV or movies unless I am sewing or knitting.  That leaves choices a) and d).  I think I’ll choose both. 

This might take awhile, choice d) that is.  Choice a) is easy, cheap, and good for when I’m in a tight spot. Swearing is madatory.  As for choice d), I suspect that I will be spending a good part of the rest of my life figuring out who I am and what I should be doing.  Come to think of it, isn’t this kind of what we all do, all the time? 

For now:

The Studio will still be open and I will still give workshops.  I have never liked the phrase, “those who can, do, and those who can’t, teach”.  This is an insult to teachers everywhere.  However, at this point, I can still teach what I can no longer do myself. 

Several friends and Chris have suggested that, perhaps, God or the universe or a higher power is trying to tell me that it’s time for me to focus on my writing.  This I will also do.  I can still tell stories and I can still write.

I can also still listen.  At my lowest point, on a day when it was hard to walk, hard to speak clearly, hard to breathe deeply, hard to find the words I wanted to say, I took comfort in knowing that there was one thing I could always do.  I can always be there for my friends.  I can always listen.

You’re welcome to come by anytime.  I’ll put the kettle on and we can have a cup of tea.



Consistently inconsistent

Whenever I need advice, I always go to my good friend, Mike.  He's a wonderful listener and I can talk to him about anything.  No matter how complicated my problems, he always has something thoughtful to say.  He has a solution, too, for every one of my life challenges.  It's always the same.  He'll look at me intently, nod his head slowly and say, "I think you should watch a movie."  He's very serious and even offers to loan me one out of his collection.

Of course, in trying to find ways to live healthy, feel good, and develop all my life coping skills, I have also been listening carefully to the health professionals with whom I spend much of my leisure time.  They have plenty of advice for me.  I've learned, however, that it is rarely consistent.

After my daughter's birth, nearly 17 years ago, my doctor told me that I had lost a lot of blood and I should have plenty of red meat in my diet.  Just a few weeks later, this same doctor told me to stop eating red meat altogether.  It seems that my lab tests showed an increase in my cholesterol levels. 

My first neurologist was convinced that I had spinal stenosis and needed spine surgery.  The neurosurgeon did not agree and sent me back to the neurologist.  They played ping pong with me until I finally went to a different neurologist who diagnosed my Parkinson's disease. 

It's just as bad when you begin to look at all the articles about nutrition and healthy living.  Drinking lots and lots of water is good for you but drinking lots and lots of water can kill you.  Take Vitamin E because it's a powerful antioxidant, which is a good thing, but don't take too much.  It can kill you. Exercising is good, and running, so one article says, helps to prevent heart attacks, the common cold, cancer, and mild depression.  Yet another article states that running, over a period of time, will cause our organs to drop down, landing on our bladders and causing them to leak.

Considering all these inconsistencies, imagine how shocked I was when I found there was one thing all my health professionals agreed on.  I was even more amazed to realize where it was that I was failing.  I was not including time for the most important health activity of all: watching television.  Mike was right after all.

Come on…  I have a very busy life.  Between solving the cryptograms in the newspaper, baking chocolate chip cookies, and going out to coffee with my husband or friends, my schedule is packed solid.  So, when the dental hygienist asked if I had been flossing my teeth every day, I responded by telling her that I do what I can but I don't have much free time.  Her response?  "Do it while you're watching TV".  My doctor has told me that I need at least thirty minutes of aerobic exercising every day.  I threw up my hands and told the doctor that my day is booked, my week is booked, and my year is booked.  "No problem", said the doctor, "you can always exercise while you watch TV." 

My therapist suggests doing stretching exercises during sitcoms, my hairdresser tells me to rub conditioner and moisturizer all over my scalp, leaving it on while I watch my favorite hospital drama, and a local minister insists that commercial breaks are the perfect time to give thanks to God. 

I added up the time needed to do all the healthy activities that I had been neglecting.  All in all, I would have to spend at least 5 hours a day watching television, just to keep up.  I wasn't pleased but I was ready to admit that I had been horribly mistaken.  From now on, I will tend to my health.  Where's the TV guide?

Taking a deep breath, I humbly shared my new plan with my husband, who was reading the daily newspaper.  He smiled at me.  I knew he was proud of his wife.  He had married a woman who could admit her mistakes and carry on.  I waited for him to tell me how wonderful I was.  Instead, he handed me the newspaper and pointed to an article. 

The headline said, "Watching television can kill you."

Halfway there...

Day 9 – I have to admit, I haven’t had any headaches since going off of sugar.  Damn.

Day 10 – They finished the cheesecake, right in front of me.  I am a third of the way through this experiment and have decided that Andrea and I will have to reward ourselves for a job well done after the thirty days are over.  We’ll go for cheesecake. I thought I would look up and find where to get the best cheesecake in Denver.  After cruising through a few cheesecake sites that, oddly enough, had nothing to do with food, I finally landed at Vollmer’s Bakery in Denver.  They specialize in cheesecake – the food kind.  They had photos and descriptions of all their varieties.  One of their cheesecakes had Bailey’s Irish Cream in it.   Another new rule:  Do not look at dessert websites.

Day 11 – I learned that holding my grandson is the best way to take my mind off of dessert.  The diet program is beginning to affect my family.  They have noticed that there are no homemade chocolate chip cookies in the house.  If I’m going to suffer, they may as well suffer, too.  They’re not suffering enough, though; they’re eating ice cream…with chocolate sauce.

Day 12 – Chris asked me to cut his hair today, which means that he’ll be wearing a hat for the next six weeks.  I did well on the program today.  The cookies were tempting, even if they were store bought.  One wouldn’t hurt, would it?  I had a tiny bit of Bailey’s tonight but that was for medicinal purposes.  Chris will vouch for me.  If you ask him, speak up.  His hat covers his ears.

Day 13 – I have lost three pounds.  I am in danger of losing my cuddliness.  Today may be a challenge as I will be at my parents’ house.  They have Oreo cookies.  They also have blueberry pie, an odd assortment of leftover Halloween candy, and hard mints to suck on when you have a sore throat.  The last time I had lunch there, I found exactly three things that I could eat:  Velveeta cheese, potato chips, and water. 

Day 14 – Didn’t sleep well last night.  I realized that every time I craved sugar yesterday, I drank a cup of tea.  Most of it was caffeine free, but I was still up and down several times to the bathroom.  I don't do that when I eat chocolate ice cream with Bailey's on it.   

Day 15 – Half way there.  I should be celebrating, but I don't have much energy today.  Perhaps I don't have enough sugar in my system.  Giving up sugar is probably not at all healthy for me. 

No Sugar Diary

Rules:  No refined sugar, brown sugar, honey, maple syrup.  I won’t check labels on bread or other packaged foods that otherwise seem healthy enough.  I will give up cookies, cake, brownies, chocolate truffles, cherry pie, jelly, ice cream, Bailey’s Irish Cream, wine, and other sweets.  New rule:  Holidays and birthdays are free days.  One must honor the spirit of the day.

Day 1 – All is well.  I had a good breakfast with protein and didn’t miss sugar today.  I didn’t miss any of the sweets until after dinner.  Then the truffles and Bailey’s sounded so, so good!  I resisted temptation.  There is a little nagging doubt about this experiment.  Why would any sane person give up sugar during the coldest time of the year?  I will undoubtedly lose a few pounds.  Why should I want that?  One needs a few extra pounds in the winter to keep warm.  Everyone knows that.  I’m also a grandma now.  Grandmas should be cuddly.

Day 2 – Devouring an entire bag of cheese curls is not a good substitute for eating sweets.  It’s not the same at all, except for that funny tummy feeling after overindulging.  Starting tomorrow, no more cheese curls.  I made Patrick’s birthday cake.  I did not lick the spoon.  When a bit of the batter dropped on my finger, however, I did lick my finger without thinking.  Is this cheating?  I don’t think so.  I cleaned up all the other tiny spills without guilt.

Day 3 – Patrick’s birthday!  Hooray!  Today I can have my cake and eat it, too!  I’ll even have a little champagne (thanks Mike and Mark) to toast the birthday kid.  Holidays and birthdays must be free days.  I will immediately add this new rule to my list.  I have been good.  I didn’t have any sugar till after dinner. I did have champagne with dinner, chocolate cake and ice cream with chocolate sauce, a tiny bit of Bailey's, and ….I have to admit….a spoonful of chocolate frosting.  Tomorrow, I’ll be back to the plan.

Day 4 – I resisted the temptation to have leftover cherry crisp for breakfast.  That should give me extra credit points, shouldn’t it?  I also made fruit and nut balls.  These are healthy with a capital H.  They are made only of ground up almonds, sunflower seeds, dried unsweetened cherries, dried unsweetened apricots, dried unsweetened figs, dried unsweetened dates, unsweetened coconut, and cinnamon.  Of course, dried fruit doesn’t ever need any added sugar.  Dried fruit is full of natural fructose, natural potassium, natural fiber, and natural calories.  Substituting dried fruit for sugary treats is okay, as long as I’m not trying to lose weight and as long as I don’t overdo it.  Anything that is as high in fiber as dried fruit and nut balls is not something that tempts me to over indulge.

Day 5 – Teo’s christening was today.  That meant that there were many wonderful treats to be had:  truffles, cheesecake, cookies, cheesecake, honey roasted nuts, and did I mention cheesecake?  I was good…even though technically it was a celebration day and I should’ve had some cheesecake!

Day 6 – I’m getting used to this no sugar stuff.  I can do it.  I don’t even get tempted anymore except when I’m really stressed out…or irritated at something or someone.  As long as everyone does what I want, I’ll be fine.

Day 7 – A Rabbi was once invited to eat dinner at the home of a friend.  He was served a wonderful dinner but noticed that there was a fly floating in his soup.  He didn’t want to embarrass his host or seem ungrateful, so he ate all the soup, including the fly.  He didn’t even question whether the fly was kosher.   The moral of this story:   When one’s host offers you something to eat, one mustn’t refuse it just because it has sugar in it.  One might offend one’s host.

Day 8 – Someone….SOMEONE ate the leftover frosting from Patrick’s birthday cake.  How many more days on this blasted no sugar program??



30 Day No Sugar Challenge

I often think about adopting a healthier lifestyle and diet.  I know it would be good for me and it would undoubtedly help me to feel better, too.  There are people out in the world who say they have recovered from Parkinson’s through a combination of good diet, exercise, meditation, and taking some sort of miracle supplement that has had amazing results.  As usual, I ponder these ideas while eating chocolate truffles or ice cream with Bailey’s on top.  If I ponder too long, I usually get a headache.

Most of the claims about supplements or miracle drugs, I take with a large grain of salt.  I’m not discounting this totally; it’s just that what works for one person won’t necessarily work for another one.  This is true of the conventional drugs for Parkinson’s.  I’m sure it’s also true for natural supplements. There are so many claims out there, how would one decide what to try?

I could say that this is the reason that I haven’t tried more of these miracle remedies for Parkinson’s. I could say this, but it’s not true.  The real reason is that most alternative therapies  also require you to make major changes in areas of your life, such as diet.  Diet changes are not easy!  One web page said that you must stop eating wheat.  My grandfather was a wheat farmer.  I have wheat genes.  Cutting out wheat would be like …like… cutting out chocolate.  A healthy diet often insists that you stop consuming caffeine.  I don’t know for sure what would happen if I cut out caffeine completely, but I don’t think it would be safe.  When the lab wants to test me, they find I have Chai tea running through my veins.  Take away my Chai and what’s left to circulate?

Then there is sugar.  It is cruel to add this to the list of don’ts, right after the Christmas holidays.  I love to bake.  I bake cookies, pies, and we also make chocolate truffles.  My chocolate truffles are good… really good.  I have perfected the technique over the past several years.  My friends’ mouths start to water when I mention them.  I cannot imagine anything crueler than to have someone tell me to eliminate truffles from my diet.   

There are other aspects of creating a healthy lifestyle that I am trying hard to accomplish.  I have started exercising.  I don’t do this as regularly as I would like but I am riding the exercise bicycle and going to my yoga class.   Chris and I have a joint New Year’s resolution that we will do yoga at home every day.  It hasn’t happened yet.  I’m still dawdling, which was, of course, my New Year’s resolution last year, so I’m at least sticking to that commitment.   I am also determined to start meditating again.  Meditation does make a difference. 

Another suggestion for a healthy lifestyle was to laugh a lot.  This is one area where skimping is not allowed.  My New Year’s resolution would not be complete if I didn’t resolve to spend time with people who make me laugh and to learn to bring laughter more into our home.  How else do I cope when I start careening across the kitchen, crashing into Chris, or suddenly find myself walking backwards on my tip toes?  Finding ways to laugh at myself and my challenges encourages my family to laugh at me, too… or something like that. 

I guess if I look at everything all together, I’m not doing so badly.  I am taking responsibility for my own health and making the changes I need to make so I can feel better and function well for as long as possible.  I owe this to my family. 

The only area where I’m stuck is on diet.  Even there, I don’t do too badly, except when it comes to sugar.  I kind of overdid it this year. Between the truffles, the cookies, the pies, the ice cream, and the Bailey’s Irish Cream, there is a little more of me than there was last year.  I don’t mind this so much except that it’s hard enough for me to get around.  I don’t need extra pounds added to my daily workout.  I’ve also been having more migraines.  Unfortunately, these are the kind of headaches that put me flat on my back for a couple of days.  The headaches increased with all the tasty sugary desserts.  As much as I don’t like to admit it, something has got to change. 

So, as of tomorrow, I will be giving up sugar for 30 days.  We’ll see what happens.  Luckily I will have a partner in this endeavor.  My friend, Andrea, had already made the decision to give up sugar for a 30 day challenge.  We’ll do this together and encourage each other.  I have a lot of motivation to keep to the goal.  I would rather give up sugar for the next decade than to have another migraine.  I feel healthier already, just saying this!

Better keep me away from the truffles, though.  I might just decide that they’re worth the risk.

The best Christmas gift

When I was 8 years old, my friend Gina introduced me to her grandmother.  I was a very shy child anyway, but this introduction took me completely by surprise and I was speechless.  How could this woman be a grandmother?  She wasn’t old.  She didn’t have white hair.  I was convinced my friend had been cheated.  This…this woman, whoever she might be, was definitely not a grandmother.  At 8 years old, I didn’t know everything, but I did know what a grandmother was supposed to look like.

My grandmother was 49 years old when my mother was born.  That means by the time I was born, she was in her 70’s.  I never knew her before she was tiny and white haired.  She was grandma.  All grandmas were like this, I was sure of it.  All grandmas used magnifying glasses to read the prayer cards that were kept in their little black prayer books.  I was sure that if I’d peek into the little black prayer book of any grandma, the words would not be anything I could recognize, even when I was old enough to know how to read.  Grandmas had a secret language.  All grandmas ironed clothes with those heavy black irons that were heated on the stove and, of course, all grandmas wore corsets when they went to church, even if they needed a daughter to lace it up for them.  They also had pretty dishes filled with candies and cookie jars filled with cookies.  Any grandma worth anything would also have a backyard where their grandchildren could make mud pies.  My grandma did.  She was a grandma’s grandma.

All this came back to me last weekend when I got the call from my son saying that his wife was in labor and could I come to pick up the dogs?   Two enthusiastic Labradors in the back of our car, a reassurance from our son that the midwife was there and everything was going as it should; we went home to wait for the call that would let us know that our grandbaby had arrived safely. 

We waited.  We waited all day and all night.  We brought them some groceries that first evening and got an update.  Everything was going well, just slowly.  This baby was taking its own sweet time in coming into the world.  They probably would have had time to get to Bethlehem…via donkey.  They had opted for a home birth and while their house wasn’t much larger than a stable, it was definitely warmer and more comfortable. 

We waited for another day and night and finally got a call at 6:00 am on Saturday, December 19.  We were grandparents!!  Our little grandson had arrived!  The labor had taken just long enough that they made the decision to go to the hospital for his birth, just to make sure everything was okay.  A few hours later, Chris and I were sitting in the hospital room, holding our tiny grandbaby in our arms.  Nothing can compare to that. 

Nothing could compare, that is, except perhaps watching our son hold his tiny baby in his arms.  This was our son and he had changed right before our eyes, from a young man and husband, to a father.  Our daughter-in-law had become a mother.  What advice could I give them?

After watching them for awhile, I realized that there was only one bit of wisdom that I had to pass down to them.  It was something that was once told to me and I hope that it is the only advice I’ve ever given that anyone has taken seriously.  It is this:  You are your child’s mom and dad.  You know him better than anyone else ever will.  You know what he needs.  Don’t let anyone else try to tell you otherwise. They are adults now and are fully capable of making their way and taking care of their little family.  My job now is to trust them and let them be.

Trusting John and Coco is easy.  They are much stronger, more knowledgeable, and infinitely more patient than I was at their age.  I listened as John calmly explained to his wailing baby, “It’s all right.  You’ve just had a long trip.  It’s tiring.  It’s cold, too, after coming from the tropics, but this is a good place.  This is a good world.”  Later, I listened from the next room as Coco encouraged her little one to nurse.  She has such patience!  She is a singer and even her speaking voice has a beautiful, musical quality to it, especially when she speaks to the baby. 

Our grandson is very lucky.  He not only has a mother who sings; he also has a grandmother who sings just as beautifully.  It’s not me.  Coco’s mom was holding the baby and singing to him the day after he was born.  When it came time for me to hold him, he looked up at me and then his eyes went straight to Coco’s mom.  I knew what he was trying to tell her, “You’re not going to let HER sing to me, are you?”  My own children, two of them anyway, would put their hands over my mouth whenever I made the attempt to sing a lullaby to them.  I love to sing so I didn’t understand this attitude at all.  My kindergarten children were a captive audience and had to listen to my singing.  I was always amazed at how quickly they fell asleep at naptime when it was my turn to sing lullabies. 

I never knew my grandfathers, but I know that Chris will make an excellent Grampa.  He’s getting ready.  He brought several books home from the library the other day.  He’s on a Robert McCloskey kick and has read Blueberries for Sal, Lentil, and Journey Cake, Ho!  Our grandson will like books and stories, I know that already. By the time he is ten, Chris will have introduced him to most of the classics:  Dickens, Shakespeare, and P. G. Wodehouse.

I’m getting ready, too.  I plan on having a pretty dish to fill with nice, organic, healthy treats.  There will be cookies, too, though I won’t promise that they will be healthy.  I still have my grandma’s German prayer book here.  Someday our grandson will look through the prayer book and wonder at a grandmother’s secret language.  He can look at it through a magnifying glass if he’d like to.   He can also make mud pies in our back yard.  We have plenty of mud. 

The only thing I can’t do is look like my grandmother.  My hair isn’t all white, though the white bit is coming in nicely.  I’m not little and I’m not old.  I rarely iron my clothes at all, much less with the heavy irons that were heated on the stove.  I have several of the old kind.  One is used as a door stop and the other two are used to press my hand made books.  I don’t wear a corset either.  We’ll leave that with his grandma’s grandma.

Mostly what we plan on doing is just stepping back and watching our little family grow.  They’re off to a most wonderful beginning.

PD and the Bureaucracy: A True but Lengthy Tale by Ed Sikov

Ed originally posted this on our "Patients Like Me" group forum.  I read it there and begged Ed to let me post it here in my journal.  Ed Sikov lives in New York City and he is a real writer.  People actually ask him to write books.  He has written a number of celebrity bios, including, Dark Victory: The Life of Bette Davis, Mr. Strangelove: A biography of Peter Sellers, and On Sunset Boulevard: The Life and Times of Billy Wilder and several books on film history.  He is also a good friend. 

Thank you, Ed, for sharing this article with us. Not only is this educational for all of us who are coping with Parkinson's or other health challenges and coping with various beauracracies, you're also a master storyteller.            ~terri

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PD and the Beauracracy:  A True but Lengthy Tale              by Ed Sikov

I live in NYC, and every few years I get a notice for jury duty. I’ve been on 3 criminal cases, been empanelled for 1 civil case (but the parties settled before we got to trial), and been dismissed once or twice after not getting selected for 2 days of service. In other words, I’ve done my part, and I enjoyed doing it.

This year was different – I got my notice and was terrified. Why? Because my particular version of Parkinson’s means that while I’m “on” every morning, I’m “off” for at least an hour, maybe 2 every afternoon. I have memory problems all day. I’m just not as sharp as I once was. I had visions – based on my experience of every day since last summer - of myself falling asleep during testimony; failing to remember testimony; getting confused over testimony – in short, having what happens every day when I’m safe at home happen in public during a trial when a defendant’s freedom hangs in the balance. So I got my neuro to write a letter recommending that I be excused.

All went well at the courthouses – the person at the first one sent me to the second one, which happened to be the one with the vast steps on which Sam Waterston et al skip up and down on LAW AND ORDER. The first fellow I saw there was great – very understanding and sympathetic. He asked me what prevented me from serving, and I told him. Fine, he said. But then he went away and stayed away a long time, came back, and with a look of sorrow and embarrassment said, “My boss wants to talk to you.”

Enter the bureaucrat: we’ll call her Pearl S. Bickle, Vice-Assistant Jury Clerk, New York County. Ms. Bickle, wearing a smart knit suit the exact shade of “I Can’t Believe It’s Not Butter” and an ugly strand of costume pearls, sat me down and, with her face pulled so tight that her mouth stretched wide as if she was smiling, said, in an equally rigid voice, “I have a friend who has PD, and he runs a multimillion dollar corporation!” Then she just sat there grimace-grinning at me.

What was I supposed to come back with? “I’m sorry”? “How nice for him”?  “What do you want me to do – throw up?”

I said, “We all have different symptoms.”

She asked me why I couldn’t serve; I described my average day – being fine in the morning and “off” in the afternoon, with memory problems confirmed by a neuropsych exam. Though she had never heard of a neuropsych exam, she was clearly certain that PD had no symptoms other than tremors. I started feeling frustrated, angry, and insulted. She then launched into a literary critique of my neuro’s letter. It was wrong, vague, incomplete, poorly written, and didn’t serve her purposes at all. No, siree – not at all. Didn’t he understand anything?

I thought – “Yeah, lady – he’s working his ass off in the hospital and seeing patients every afternoon in his office while you run your pathetic little fiefdom as Pearl S. Bickle, Vice-Assistant Jury Clerk, New York County. The idea that a brilliant physician educated at the University of Bologna should be condemned by this civil servant hack was ludicrous but it was happening and I was in the middle of it struggling not to lose my temper in a courthouse, get arrested, and thrown in NY's infamous Tombs. Still, I imagined setting fire to all the papers on her desk, just to see the look on her face.

She then began firing off instructions about improving the letter to her satisfaction in a voice so soft and rapid that I had to ask her to repeat herself three times. Then I asked her to please write down what  she wanted.

Suddenly Pearl S. Bickle found her voice: “CAN’T YOU REMEMBER IT?”

“No,” I said – “That’s the problem.”

“BUT YOU’RE A WRITER!”

“Yes,” I said – “That’s another problem.”

“You’ve got to keep busy,” she advised. Oh, thank you, I thought – I hadn’t considered that option. Wow! A new idea!

After ten minutes more of this irritating and, to my mind degrading treatment, I finally convinced her that my symptoms were real. To which she responded, “What if you get better?”

In a voice trembling with rage, I informed her that PD was a degenerative illness, an the likelihood was that I would either stay the same or get worse. She simply did not believe me.

I asked her if she thought it would be fair to all concerned if I were to fall asleep in the jury box during a trial. She finally acknowledged that, well, no -  it wouldn’t be a good idea, and she decided that if I got my neuro to write her an acceptable letter the way he should have done the first time, one that said the following things – 1) blah 2) blah blah 3) blah blah blah – she would reluctantly consent to remove me from the jury rolls.

As she escorted me to the door, she blew me away by mentioning, “Actually, my friend with the Parkinson’s and the multimillion dollar corporation has a staff of hundreds to do his work for him.”

The gall. The stupidity. The pointlessness. The bureaucracy!