On Andy

Yesterday Andy Williams passed away.  I didn’t know Andy well, we had only met a few times, but his death seems to have affected me greatly. 

I couldn’t get to sleep last night; my mind sifting through layer upon layer of thoughts.  Thoughts on death, thoughts on life, thoughts on growing older filled my head as I lay, eyes closed on the pillow. 

Andy was 38.  He was diagnosed with leukemia and after what must’ve been a long, but not long enough year, he passed away from complications related to the disease. 

As we grow older we are more often confronted with the death of our peers.  At first we are in disbelief; our relationship with death is new and we cannot comprehend what lay before us.  As time passes we begin to understand things a bit better, but it is always a shock to hear that someone has died so young. 

Death in itself does not sadden me.  The death of a grandparent who has lived a full life may only be sad in a selfish way.  We will no longer see this person; he or she will be missed.  But seeing a friend, loved one, or acquaintance pass before his or her time brings a separate grief.  I think not of myself and a relationship lost, but of them and what could have been.  A life cut short never seems complete though it is. 

Andy on this day I feel for those closest to you who will miss you in ways I cannot know, but I also feel pain for you, for what your life could have been had it been allowed to continue.  Andy Williams the 40-year-old, the 50-year-old, the wise old man.  None of those will ever exist in this world.  For this I am sad.

Duality

Sometimes I feel that I am the happiest and saddest I’ve ever been; the most fulfilled and the least fulfilled at the same time. 

For now I will focus only on the incredibly remarkable nature of this thought.

Fake It Until You Can’t Make It

I am constantly being evaluated by professionals, family and friends alike, and I’m fucking tired of it.  They all want me to be open, to be honest about my experiences, my thoughts and my feelings.  If I am honest with them, tell them of my daily struggles and deepest fears, I am rewarded with sad eyes and worried thoughts. 

I’m tired of being judged; of being watched as I open a jar or shovel food into my mouth.  Everyone is constantly on the lookout for the changes they know are coming. 

But they can’t see it all, and they ask questions.  They tell me I must be forthright.  Instead, I often do my best to hide what I can.  It can be a relief to let go, but sometimes I want to keep some things to myself; pretend it’s not so bad or tell a joke about my ineptitude.  I know; it’s not funny.

Every moment is an audition.  Don’t fall on those stairs or you will make them all sad.  Though you try to act as normal as possible, they will know it is only a facade. 

Maybe if I fall they’ll see it’s no big deal.  No, that’s not right.  It’s no big deal to me, it is to them.

No one wants to hurt the ones they love.  No one wants to see the pain and sadness in eyes fixed only on them.  Why would I want to tell you about something your eyes did not see?  It will only hurt you, and you’re not like me; you’re not used to the pain.

Humorous Craigslist Post of the Day

Price:  $10 firm

Literally

I can't break a sweat.  I literally don't have the strength.

Sorry for Sorry

I always apologize when I am unable to complete a task and must ask for help; when I make a mistake at a simple task, or do anything that causes that look of concern I’ve grown so accustomed to.

Whether it is a stranger or a loved one, I feel the need to apologize for my shortcomings. 

This disease, and I don’t call it that very often, to myself or in this forum, manifests itself in so many ways and changes so often, that I know much of what you see is new.  I know it is new to you because many times it is new to me, and I apologize for its presence. 

I am embarrassed by it and I apologize.  I am embarrassed because I don’t like who I’ve become.  I shouldn’t be embarrassed; I can’t control any of it. 

I don’t know what it is that makes me feel embarrassed; to feel the need to apologize.  Do I think it’s my fault?  No, I guess I don’t.  I don’t think it’s that simple; to assign fault. 

I do know that I draw special treatment; I need help.  I guess it is for that I apologize.

Food and Water

Best thing I can do to keep my energy level up throughout the day; drink lots of water.  

Second thing; eat.  

I would recommend both.

The Grocery Store

Almost everyone goes to the grocery store.  Depending on where and when I go, I encounter strikingly different varieties of people.  In the middle of the afternoon on a Wednesday, at the Shaw’s in Colchester, I encounter the following. 

There are the moms.  I don’t like the moms.  I find them cliquey and rude.  And if they have a child with them I immediately find them to be excellent mothers (aww) or terrible mothers (eww). 

I was walking down an aisle approaching a mom perusing the salad dressings, her cart blocking my path.  As I approached I slowed, looked towards her and voiced a mild-mannered “excuse me” accompanied by a smile.  She didn’t look in my direction.  Nor did she move her cart.  She did not acknowledge the fact that I had stopped in the aisle, politely awaiting her next move.  Instead she grabbed an item off the shelf, manhandled her cart into the right direction, turned and walked away.  Sorry to have been a bother, your majesty.

There are the people in sweatpants.  Most of this group is drastically overweight.  The grocery store is one of the few places where it seems acceptable to wear whatever the hell you want.  I could go into the different styles of sweatpants and what each might convey about their owners, but I won’t.

I saw a man today with grey sweatpants and a tank top.  It was in the upper 30’s outside.  His arms were a tannish red on the front, pasty white on the back like he had fallen asleep in a tanning booth.  He didn’t look like the tanning salon type.  He was obese and all of his exposed skin, arms, shoulders, neck, and the top of his back, were covered in long dark hair.  I shouldn’t say covered.  If it were covered I wouldn’t see his skin.  He was walking from register to register pushing his cart, on a mission for a cold soda.  Soon he found a cooler and opening the door, knocked several items from the display.  He did not pick them up.  

There are the old people.  There are two types of old people; the singles and the couples.  The couples move more slowly through the store, as even after decades of marriage, and years of weekly visits to the same grocery store, they still seem to discuss each item.  There is one positive, they are two people with one cart. 

The single old people are perhaps more interesting.  Mostly they are women, either because they do the shopping, or just as likely because their husbands have passed.  Despite their similarly extensive experience shopping for groceries, and the added simplicity that each is one person who likely knows what he or she wants, these people are almost as slow.

What makes them the less preferred of the old people sub-groups is that they each have a cart, and they tend to gossip in groups of two or three, clogging the two-lane aisles.  The next time I hear talk of a new recipe, or what’s on special, I might just stop and ask questions.  Of course if I hear that excited tone that could only mean a juicy piece of gossip I’ll have to respect their privacy.

I saw a woman in the soda aisle.  She was about 65.  She had a 12-pack (I think; is that how they sell soda) of Coca-Cola and a 12-pack of Coke Zero in her cart and she was staring blankly at the shelves in front of her.  As I came closer she made a selection, grabbing hold of a third 12-pack, this time Coke Zero Cherry (or Cherry Coke Zero, I’m not sure).  She smiled and maneuvered her cart out of the way as I passed.

There are the blue collar guys.  I’m not sure what the deal is with them.  They come in twos and threes and buy a lot of ground beef.  Maybe they’re firemen stocking up the firehouse fridge.  They are loud and obnoxious, but they seem like good guys, they shop quickly, and they leave me alone.  I also get an occasional laugh out of their boisterous, juvenile humor.  I like them.

There are the young couples.  They’re quiet and they don’t get in my way.  I like them as well.

That is all.

A Friend of a Friend

Recently a friend of a friend acted jealous that I can eat whatever I want and not gain weight.  She compared me with her boyfriend who also eats whatever he wants.  

I didn't want to make a scene so I kept my mouth shut.  Here's what I would have said:  Fuck you a friend of a friend.

Give me your advice, I’ll take it or leave it…

Everyone needs someone to look up to.  Someone who has been in their shoes, who can offer guidance and the perspective that age brings. 

A lot of times when I was young, I didn’t want to be told what to do; I couldn’t believe that someone had been there and might have any idea what it was like.  I was confident and I was stubborn.  I wanted to be in control; to find my own way.

But as I’ve gotten older I’ve become a better listener.  I ask questions with genuine interest and try to learn from their answers.   

But I still don’t want to be told what to do or how to feel, when I know with the utmost conviction that they don’t understand.  I want to be the one asking the questions.  I’ll choose whether I like the answer.

I am constantly being told what I need to be doing, how to eat, what should be important to me, and more and more what I should not be doing.  I don’t mean what to eat; I mean how to eat it.  I need to relearn how to eat.

I know that I’ve changed, that I’ve grown up a lot, but sometimes I still feel like that kid who won’t listen, who just wants control of his life. 

I didn’t have control then, and I don’t have it now.

Changing the Rules

We spend our whole lives learning how to live on this planet.  We learn the mental, the physical, and the spiritual skills we need to successfully move through life.   We expect that once we learn a new skill, we won’t forget; we’ll never need to learn again.  We’ll never lose the skills we have.  You can’t teach an old dog new tricks, but then you shouldn’t have to.

But things change.  Without time and practice we lose some of the skills we spent so much effort gaining and refining.  Practice makes perfect, and neglect makes for a shitty performance.

And if we get out of touch, if we lose the skills we once had, we can revisit the past; nothing is lost forever. Think of all the amazing things we’ve accomplished; we could do them all again if we wanted to.

And there are some things we’ll never lose.  Things that we learned so young, and use so often; things we never consider.  The basic skills that are part of all of us.

But maybe we were wrong.  Maybe we’ll lose the things we took for granted.  Maybe that hope for the future, that confident voice in our heads saying “I’ve done it before, I can do it again”; maybe it’s a lie.  What if the past is the past, and you can’t go back to enjoy the things you remember so well? 

My life is constantly changing.  The way I interact with the world is changing.  I am giving more thought to basic actions, everyday functions, than I would’ve thought possible.   I am constantly evaluating myself and seeing, feeling, and hearing the changes I fear.  I change; I adapt all the time to make it work. 

It’s difficult to learn when the rules are always changing.

Oh and by the way...

I went to the doctor’s complaining of a variety of ailments and in a matter of fact manner, I mentioned that my balance didn’t seem so good.  Boy did that raise a red flag.  

About Calcutta

"The food sold on its streets may be unidentifiable, but it’s less likely than New York City hot dogs to contain a cow asshole."

U.S.Grant

He didn’t like marching bands and could recognize only two tunes.  

One was Yankee Doodle.  The other wasn’t.  

In a Moment

At a stoplight I saw a man in the back of a Ryder moving truck full of Christmas wreathes.  The back door was open, stairs down as he stood in the truck bay rearranging them.  I waited for the light to turn and watched as the truck shifted into gear and began to pull away, off to make another delivery.  The man took casual hold of one of the wooden racks that held the wreathes, like a standing passenger grabs a pole as the bus rounds a corner. 

He wore a red Marlboro sweatshirt and blue jeans.  I found myself wondering if anyone buys Marlboro apparel, or if it is all free with proof of purchase.  I began to imagine what else one might find in the Marlboro catalog.  Baseball caps and Starter jackets I suppose; maybe NASCAR merchandise back when it was the Winston Cup.  Most importantly, does the catalog include cigarettes or smokeless tobacco?  If you can buy beer with beer cans, can you buy tobacco products with tobacco products?  I bet not; after smoking twenty cartons and saving each proof of purchase, who would choose a sweatshirt over another carton?

The sight may have made me think of Christmas, but all I could focus on was the sweatshirt.   

Doing What I've Always Done

In the winter of 2010-2011 I got a gym membership at work.  I used to go after work and run on the treadmill, ride the stationary bike, do push-ups, sit-ups, work with dumbbells. 

I started going because I noticed changes in myself that summer and fall.  My ankles felt weak.  I couldn’t push off the same way.  I’d go for a run and would feel like my ankles were almost locked up; like I was trying to run flat-footed.  I’d set up a box or something and jump on and off of it from side to side and front to back, trying to strengthen my ankles.

I used to work out a bit at home.  Over time I began to notice that I was not gaining strength as I used to.  My muscles were not sore the next day as I expected them to be.  My hands and wrists felt weaker. 

That winter I continued to try everything I could to gain strength.  Things didn’t feel as they always had.  I would run on the tread mill and every step felt awkward, like my body didn’t know when and where my foot would land next.  I had to concentrate on running; on making my legs move like I wanted.

At times that winter I got lazy; I got discouraged because I didn’t know what was happening and I couldn’t seem to control it.  Some weekends I sat on the couch all day and watched tv while my friends were out skiing or hiking.  I told them I didn’t feel like going.  I wonder what they thought; that wasn’t like me. 

I went snowshoeing a few times.  Snowshoeing is a bit awkward even for the strong, highly coordinated athlete.  In the cold I found it took me forever just to get the snowshoes on.  My fingers didn’t work very well in the cold.

I found I could walk okay on flat ground, and going up hills seemed alright, but going down them was another story.  Again I had to concentrate on lifting each foot and locking my ankles to keep the front of the shoes elevated.  I was convinced there was something wrong with my ankles.  I tried to run down the trail to keep up but kept digging the front of my snowshoes into the ground; flopping on my face.  My friends were so far ahead they didn’t notice how many times I fell.  They saw the snow packed into my zipper and stuck to my hat and knew I had taken a digger.  I didn’t tell them I had taken ten.

One day I finally gave up thinking I could fix it on my own; I made an appointment with my doctor.  I put my faith in someone else and a new chapter began.

I Try to Eat Dessert

I try to eat dessert almost every day.

Strange and Unnecessary Considerations

There’s a silly question I consider; it’s a “would you rather?”

Would you rather lose use of your legs or your hands? 

It’s a tough question.  Think of what you do with your legs.  And then think of what you do with your hands.

I think of this because I see people in wheel chairs and think of all they can do.  Yes, I compare myself to people in wheel chairs.  But losing the use of a single (or set) body part is so much different. 

I probably don’t consider all they can’t do; the places they can’t go. 

But think of all your hands can do.  Hands are incredible tools.  Without the use of your hands, there isn’t much you can do in the world. 

It’s a strange question; a strange comparison.  The world is made for normal, and neither of us is that.  

A Sad Fact

In 1860, one out of every seven Americans belonged to another American.

I Separate My Life into Segments

I separate my life into segments.  I suppose everyone does this.  Childhood, high school, college, post-college career, marriage, kids, etc.  My divisions aren’t so mundane.  I’ve felt this way about life ever since my brother passed away when I was 18.  For a while that was it; a pre-Nick’s death phase and a post-Nick’s death phase.  As I got older I realized how different a person I had become, and I’ve chalked a lot of that up to losing my brother.  But people change.  Part of it is just growing up.  A lot has changed since I was 18.

More recently I’ve been forced to look at my life again, and divide it up further.  In August of 2011 I was diagnosed with ALS, which brought a new phase in my life and forced me yet again to see life in a new way.  Now I had my pre-Nick’s passing phase and my post-Nick’s passing phase, as well as my pre-ALS phase and my post-ALS phase.  I put it this way because obviously the two events are unrelated so though it may seem to make sense to define them on a purely chronological (i.e. non-overlapping) basis, their exclusivity does not allow for this treatment. 

I try to remember back to a previous phase.  It’s been over ten years since Nick passed and just over two since my diagnosis.  Obviously looking back two years is easier than ten, but it seems that imagining life in any phase outside of the current one is difficult.  The brain quickly adapts to new circumstances; memories of a previous life quickly become distant. 

It is what it is because of the past, and I am what I am because of the past.  I can look back, tell stories, and try to remember what it was like, but today is what matters; today is what’s real.  

Cushion

I feel for all of you skinny, no-butt people out there.  Sitting in a wooden chair must hurt you too.  I never really saw the point of seat cushions until now.

Uh-Oh

My girlfriend works in the public school system and my doctors tell me not to get sick. 

Shit.

Superpowers

Everyone in the world either wants to be noticed or wants to be invisible.  Most fall somewhere in between.

I heard a segment on NPR in which folks were asked if they'd rather have the power of flight or the power of invisibility.  The answers and analysis that followed drilled deep into the human psyche; a depth I’d rather not get into.  But in the broadest form, the analysis went as follows; some want to be noticed and some want not to be noticed.  The prideful choose to fly; the shameful to be invisible.

I'm not sure I was ever truly a flier, but I certainly never would have chosen invisibility.  What sort of life is that?  By definition, you are nothing.

But now I'm not so sure.  Most days I'd rather go unnoticed, if only because I think it means I'm blending in.  Sticking out in a crowd can be viewed in a positive light, but if you feel you are sticking out for all the wrong reasons, it can be difficult to see things this way.  Normal is a floor (something to fall back on) for some, a ceiling (something to aspire to) for others.

I find myself wondering what's on people's minds when they see me.  They must be wondering why this or why that.  I think about it a lot.  Maybe it’d be easier if I were invisible.  

I'm Hungry and I Want Food...Now!!

Since my deglutinization, (a term coined by our former Commander in Chief, George Dubbya), I have found it difficult to find a quick meal; lunch on the go.

I've never been one to frequent fast food joints, doughnut shops or bakeries, or fuel my body where I fuel my car (convenience store food, gross) but occasionally I crave a handheld, takeout meal.  

I can't tell you how many times I've walked down South Church Street carrying Big Daddy's Pizza or a KKD sandwich, be it 2 am or otherwise.  Or how many car trips have started with a bagel sandwich and the resulting mess.  I miss those kinds of quick, satisfying meals.

Taking a big bite out of a folded slice of pizza on a paper plate without regard for the hot sauce that will no doubt burn your mouth.  Ripping open the wrapper and diving into a sandwich you know is too big to finish.  But you finish it.

Some say life is about enjoying the simple things.  I'll have to look for substitutes. 

On Bullying

I was a small kid.  I'm a small grown-up.  I was always the shortest (not one of the shortest, the shortest) kid in my class throughout elementary, middle, and most of high school.  And I was bullied.  By kids in the neighborhood and by kids in school.  By "friends" and by kids I barely knew.  And always by kids that were bigger and older than me.  I used to dread the bus ride home.

Sometimes it was mean spirited and sometimes it seemed almost friendly.  Kids don't think.  They joke and laugh and draw attention to themselves.  They point and laugh and you feel alone; isolated from the crowd.  It's all such fun.

Why do people stand by and let these things happen?  Throughout society, so many people have a "not my problem" mentality.  We turn a blind eye to those in trouble.

More oversight isn't the answer, for so many reasons. 

Policing the activity won't change the way it is received by those around us.

Standing up to the bully is not the answer, at least not alone.

We need to stand up to bullying together.  As children and as adults.  Attitudes and actions can change if the majority wants it so. 

Life is about incentives.  Bullies have an incentive to continue their actions if they are rewarded with attention, with laughter, and with popularity.  If kids (and people) get a positive outcome out of bullying, it will continue. 

We need to stop that.  We need to stop rewarding bullies.

The innocent bystanders, the other kids on the bus, the majority who are not involved, need to get involved.  Not one kid trying to be a hero, all of us need to stand up.

With time we can change behavior.  Life is all about incentives.  If we can change outcomes we can change behavior.

We need to stop following the crowd and stand up for ourselves.  And we need to do it together.  

Social Norms

It's strange how once people have made an acknowledgment of someone's condition, loss, or bad circumstance, it is almost never brought up again.

I'm not sure that I want to talk about it, in fact most of the time I'm sure I don't, but I'm fascinated by the behavior.

Maybe there's never a good time to ask.  In fact I know there's never a good time.

Maybe they don't know what to say.  Ask me whatever you want, sometimes your questions entertain.

Maybe having acknowledged the situation, and offered to be there, they have passed the burden back to you.  Anyone who feels this way either doesn't get it, or doesn't care.

Maybe they have a difficult time talking about it, want to ignore it, or are afraid to get emotional.  No shit.   It's not always about you.  Maybe it's time to put on your big boy pants.

I'm not telling you to open up, to care, or to do anything you don't want to.  But I can't ignore it, and sometimes it bothers me that you can.

This is Not the Greatest Song in the World (this is just a tribute)

On a spelling test in elementary school I once spelled it S-O-X.

I was beside myself when I got it wrong.

The Iguana is the Sneeziest Animal

A couple of years ago I was at a party.  The apartment had hardwood floors and I was in my socks. 

I had more than a few drinks, but was still keenly aware of the slippery floor under my socks.

Later when I sneezed, I lost my balance and fell to the floor. 

I lay on my back, laughing at myself as the hostess chimed in to her boyfriend, laughingly, "I told you the floor was slippery".

I got up slowly, casually.  I played the fool; played it off as if it could've happened to anyone.  As if it was too many beers and a slippery surface. 

It wasn't.

Vulnerable

I never used to feel vulnerable in public.  Walking home from the bars or a party late at night, or as a tourist in a strange city by myself, I never once was afraid.  What if someone this or that?  What would I do?  I never gave it any thought at all.

Maybe it was a false sense of security, but it was real to me.

Now I think about it all the time.  I wonder what I would do if someone approached me alone.  If someone wanted to do me harm, what could I do about it? 

The answer is nothing.  I could try to beg for their mercy; to put my fate in someone else's hands. 

Once again I've lost control.  I have to rely on someone else.  And I hate it.

Back at Home

I've spent the month of October living with my parents in their new house.  I moved out of my Waterbury apartment and won't be moving into my new place until November 1^st. 

My parents have been amazing.  This Sunday morning they are making Hilary and I blueberry pancakes with bacon, sausage, coffee, orange juice, and Vermont maple syrup. 

Tonight my father wants to make lobster bisque to accompany the marinated flank steak (local grass-fed Hinesburg beef) he has already planned. 

They have been so welcoming of both of us over the past few weeks, making us more meals than I can count, and sharing their beautiful home. 

Thanks so much for everything, from Hilary and I.

Golf

In 2009 I bought my first golf membership.  I joined Williston County Club with three of my friends.  We played 9 holes most days after work, and 18 on Saturday and/or Sunday.  I went out by myself when no one was available.  For the first time I was playing enough golf to see myself improve.

The next year we upped the ante.  We became junior members at Burlington Country Club.  We didn't get the perks of the real members, like a locker, bag storage, club cleaning, or preferred tee times, but we also paid a small fraction of the cost.

Sitting at the bar in the newly remodeled pub, fresh off a day in the office and 9 holes at a private country club, I felt like I had arrived.  And my game continued to improve as I learned how to hit my driver to its full potential, draw the ball with my long irons, and consistently emerge from the sand trap unharmed.

And I learned how to play real golf, without the gimmes of a friendly game.  I learned how to putt with confidence and play without mulligans.  I played in tournaments and lowered my handicap to single digits. 

I became the kind of golfer who could play with anyone and make a respectable showing of it.

That winter something happened.  I didn't feel the same.  But when it came time to pony up for another year of golf, I did.

A friend and I took our golf games to the Country Club of Vermont ("CCV") in Waterbury.  CCV is an incredible picturesque, private course laid out in the links style.  With views of Camel's Hump, Mount Mansfield, and the nearby Worcester Range, it feels more like heaven than earth.

Before the course opened, I played a round at Lang Farm in March.  The weather was in the 40s and raining.  I couldn't grip my clubs and was freezing cold the entire time.  I attributed my experience to the weather.

When finally the driving range opened at CCV after a cold, wet early spring, I found it wasn't just the cold.  I wasn't making solid contact.  I couldn't hit the ball nearly as far.  And all I could focus on was my tight grip on the club.

I went to a doctor in April, but it would be a long time before all of their poking and prodding would provide any information.  For the time being I just knew that my golf game, and anything else that required strength and coordination, had gone to shit.

I tried everything I could think of to get stronger, keeping my mysterious ailment to myself.  I actually improved my short game, but everything else was so terrible it was embarrassing.  I don't know what people thought because I didn't ask, but those who had golfed with me the year before had to know something was up. 

I began to choke up on my driver for more control.  I couldn't hit my long irons for shit.  I'd go to the driving range alone, and shrink with embarrassment when I couldn't reach the 90-yard green with a pitching wedge. 

I was embarrassed at my futility, and soon I quit playing.

Now when I drive by a golf course I feel a range of emotions.  I feel a sense of longing.  I feel sad.  But mostly I feel nothing at all.  My memories of summer evenings on a peaceful golf course seem so foreign; so distant they’re dead and buried.

My House

The house I grew up in is still standing.  So is my memere and pepere's house, where I lived for 3 years after college. 

The airport bought both houses as part of their "too many decibels, expansion, who knows what the hell they’re doing" plan. 

Occasionally I still drive by 57 Dumont Avenue and 6 Patrick Street and take a look at the empty, neglected buildings.  They still look the same from the street, sort of.

At some point the houses will be demolished; razed and removed from existence.  Instead of driving through a neighborhood of abandoned houses I will drive through a set of empty lots, newly planted trees, and eerie stillness.

Both still feel like my house.  One day I won’t be able to visit anymore.  

In the Moment

People seem to think that if I get down, it's because I'm thinking of the future; the big picture.  Sometimes I get down about the present.  When I am in the moment and those around me are enjoying themselves in a way that I feel I can't.

I went to a wedding this past weekend.  People dance at weddings.  People drink too much at weddings.  They let it all out, forget all their worries, and enjoy the moment.

I try to do the same.  To enjoy myself.  To blend in with the crowd.  To smile, to laugh, to live. 

But I can't dance.  Anxiety fills my mind as I step to the dance floor and move my body awkwardly.  I can think of nothing except "don’t fall" as I try to look as natural as possible.  

And I can't drink too much.  If I am to retain the ability to speak and walk, I mustn't drink too much.

I tiptoe around the people on the dance floor, worried that someone might bump into me.  I move through the crowd on the way to the restroom.  Walking deliberately I avoid eye contact.

When the DJ calls for all the singles (unmarried) out on the floor, I keep my seat.  I'm afraid of what happens next.  What if I have to dance with a stranger? 

When a middle-aged woman gives me a hard time for standing still, not moving to the music, I take the criticism.  I feel some sort of embarrassment, like I'm a stick in the mud, incapable of having a good time.  I try to be invisible.

When someone asks what's wrong, I don't know what to say.  Everything is wrong.

Thumbs Up

Don’t take your thumbs for granted.  

Try going a day without using them.  

Good luck.

Made of Iron

I have a lot of kitchenware.  Most of it thanks to my memere, Genevieve Vaillancourt, who passed away in 2009. 

One item (or set of items) of note is her four-piece set of Wagner Ware iron skillets. 

Living in an apartment on lower Maple Street in 1950 with her newlywed husband, Roland, she walked to Strong Hardware to buy them.  She was a woman just over 5 feet tall, and they were iron skillets to be carried back with her; she bought them one at a time.

Strong Hardware, along with a restaurant, saloon, and its namesake 1,500 seat theater, was housed in the Strong Theater building at the corner of Main and South Winooski.  The building was completed in 1904 and stood at that site until it was razed following a 1971 fire.  It is now the site of the 6-story Courthouse Plaza building.

Thank you memere and pepere, they still get plenty of use.

Thanksgiving

In a little over two weeks I will be moving into a new apartment with my girlfriend.

I never thought I'd be lucky enough to say that.

Life's Little Problems

Sometimes I want to stop and get coffee some place; to-go coffee from a coffee shop, not a gas station.  But I’m afraid because I can see that moment when I’m handed an uncovered steaming hot coffee and I have to a) take it from the employee’s hand, b) carry it to the “coffee prep station” for a lid and coffee cup sheath (not possible without significant spillage), c) carry it to my car without making a mess (yes, even with the lid on this can be an issue), and d) not spill it in my car as I try to steal a sip while driving.

All of this causes enough anxiety that I decide not to stop at all. 

I’ll just make coffee at home. 

Changes

At the urging of my parents, doctors, and girlfriend, I have moved out of my 2^nd floor apartment in Waterbury.  It had 15 wooden steps, a cement landing, and laundry in the basement. 

I looked at the apartment, and signed the lease, on Sunday, August 28^th, 2011.  The day Irene hit Waterbury with over 6 feet of flood water in some places. 

I was diagnosed with ALS three days later.

My building at 25 N Main, protected by a small rise in the road, did not see any flooding.  To the west, the water reached three or four buildings away.  To the east, it was a bit farther, reaching up past the old Alchemist location at the corner of Elm. 

The flood waters had subsided by the time I moved in that October, but the signs were everywhere.

Two years later Waterbury and I have both changed. 

We're not quite what we used to be, but we're moving forward.

Random Excerpt

Because this blog is titled as it is, I have included this excerpt from some writing I'm doing.

In July Hilary and I took a trip through Eastern Canada.  The following is an observation from a cafe we stopped at outside Kejimkujik National Park in Nowheresville, Nova Scotia.

We overheard a fellow patron complaining about the service to her husband.  Of course we weren't sure where she hailed from, but based on her dress and attitude, we pegged her as an over-privileged, city-dwelling, heiress to the throne of entitlement.  I may be out of line, but at the very least we felt bad for her lapdog husband.  The look in his ever-weary eyes seemed to cry out "I still can’t believe I married her."   She didn't seem like one of those "shit happens" types.  She was more of the "everything better be perfect or you're gonna hear about it" type.  We discussed her and those like her as she complained about the soup selection, lack of half-sandwiches, and slow service to her now brain-dead partner.  At least she gave us something to talk about. 

After eating and leaving a nice tip for the poor waiter/counter-service boy, (we assumed he would be getting exactly nothing from Queen Victoria to our left), we were on our way on Nova Scotia 8 South.  

Sore Subject

Don’t offer help when I don’t need it.  That’ll only piss me off.

Don’t ignore me when I do need help.  I’ll get frustrated and think you’re an asshole.

Guess I should try to be more understanding.

Not Me

There are probably a lot of people who would love to spend their lives in a chair.  

I’m just not one of them.  

Impressive Feats

I'm fascinated by the most mundane of things.

I see someone typing at what would be considered a normal speed and I am taken aback.

The level of finger dexterity and precision it takes to use a keyboard or touchscreen is incredible. 

I see children jumping around outside and expect them to fall and get hurt.

Balance is impossible NOT to take for granted, until it begins to fail you.

I hear someone speaking in a rapid manner and cannot believe my ears.

You always assume you'll be able to precisely express yourself with the spoken word.

I know I used to be one of you, so why am I so impressed?

On Traveling

Want to go visit my friends in ANYCITY ANYWHERE?

Come to think of it, no, I don't.

Well, that's not really true; I just don't want to as much as I should.

Nothing is as simple as it used to be.

Of course I enjoy visiting places I've never been, but I'm so limited in my abilities, I know I'll never get the full experience.  I'll never enjoy it the way I would have before.

I'll stay in while you go hiking, skiing, biking, or kayaking. 

It feels like such a waste.

Dials and Knobs

Dammit I hate dials and knobs.

I don't have the thumb strength to pinch the dial and turn.  I end up wrapping my index finger around it and rotating awkwardly. 

A few months ago, I was at my parents' house watching television late at night, and had to unplug the lamp because I couldn't turn the metal knob.  I almost went to the garage for a pair of pliers. 

Try turning a small knob without your thumb.

And don't get me started on can openers…

Just to Clear Things Up

Recently I've gone "gluten-free".

Most people assume I've done it for the same reason everyone else does, but some people ask.

Yes, I have found that my digestive system runs a bit smoother, but that's not it.  That would never be enough to give up approximately half of the American diet; pizza and beer.

I've found I can't control much in my life but the food I eat is one thing I have full control of.  As a result I've been experimenting with the food I eat for a long time now and though it seems that I have to re-convince myself of things I thought I knew (always having doubts), I think I've learned a few things.

Last weekend I scrapped my gluten allergy theory and guiltily ate lots of wheat-containing products.  I ate a batch of hot cider doughnuts from Adams' Orchard in Williston.  Go there and eat some.  I ate everything that was put in front of me at Misery Loves Company.  This included lots of fried chicken, pasta, and various sauces no doubt containing flour.  Go there as well.  That night I drank a single Smuttynose Robust Porter.  Fuck it was good.

I felt terrible after eating the doughnuts, but so does everyone.  After dinner I was too full to know what I felt like.  I went right to bed after the beer.

The next day, and possibly that night though I don’t remember for certain, it felt like my skin was crawling.  It's tough to describe, but essentially my arms and hands were very tingly. 

For ten days or so, my left pointer and middle fingers twitched constantly.  This has happened before but not in a long time.  The tendons in my forearm that control the bending of my fingers were firing for no reason, causing my fingers to curl up each time.  Needless to say it's very frustrating when you can't straighten, or keep your index finger straight.  For one thing it makes typing very difficult.

This has almost stopped now, and I'm not fucking with gluten for a long time.

Try telling this to a doctor and take down his response.  I'd place bets on "Hmm" or "Huh".

Hurry Up

I'm incapable of doing anything fast.

If the phone rings in the other end of the house, I'll call you back.

If I'm crossing the road and a car is coming, it better stop.

If you want dinner made in less than an hour, make it yourself.

If your dog or cat gets out, I'm not catching him.

If you're behind me in line at the grocery store, sorry but the register girl is much faster at swiping my food than I am at loading it onto the conveyor.

And if you ask for my I.D. at a restaurant, give me a minute.  It's in my pocket but I've got to get it out.

But hey, I'm in no rush.

Control Freak

I used to be a bit of a control freak, getting upset when things didn't go my way.

Then life happened.  And I had no control.

Now I try to keep a level head; never too high, never too low.

I control what I can.  I try not to worry about the rest.

But when there’s less and less that you can control, the few things that remain become very important.  You may take these things for granted, but the line can blur between what you can and can't control. 

And as time passes, you must accept that you have less and less control.

That's the difficult part.  

Slander of the Day

Healthy Living is a very presumptuous name for a grocery store.  I’ll live however the fuck I want.

Losing It

Look at yourself in the mirror.  Do you like what you see?  Do you look how you would expect?

I see my face first, and it looks about how I remember it.

Then I see the rest of me and it gets more complicated. 

Part of me still seems to be preconditioned to think thin is good.  But thin turns into scary and unnatural very fast.

I guess I shouldn't be surprised.  A scale would tell me the same thing.

I look at fat as a sign of health.

Hello, Who Are You?

Describe yourself to a stranger.  What do you say?

I'm not sure what I say.  I used to know.  But now I'm not so sure. 

I used to focus on my interests; my work, my free time, what I liked to do.  So much of that has changed.  I don't know who they're meeting. 

It's a difficult circumstance, meeting new people.  Do I avoid the elephant in the room and hope they don't notice or do I bring it up and watch the room fall silent?  Usually I avoid it, because no matter what they might be thinking, strangers rarely ask "What's wrong with you?"  

Maybe they ask someone else.  I don't know.

Out of Respect

I don't usually throw away things that belonged to my brother.

But trashing, or better yet burning Lance Armstrong's "It's Not About the Bike – My Journey Back to Life" is an easy decision. 

I'm sure Nick would already have done so, and thrown in a few "Idiot!" riddled comments along the way.

Out of respect for him, and disrespect to every shameful liar out there, I will dispose of this example of all of the worst aspects of the human existence.

On a Sidewalk in Seattle

I was on a business trip in Seattle and I had had a couple of beers.

I was in the university district, walking down the street and staring at my phone; a text message from a friend.

I kicked a crack in the sidewalk and went down on the pavement, phone crashing into pieces.

Students were all around me, asking if I was okay, if I needed help. 

I felt so embarrassed as I fumbled for the pieces of my phone, trying to put it back together, hands and knees on the sidewalk.

I mumbled "I'm okay," but I didn't feel okay.

I wished no one saw me.  I wished I was alone.  

All I wanted to do was lay there on the sidewalk, close my eyes, and hope it would all go away.

On the Role of Government

You don't need a license to feed the public.  You do need one to cut hair.

A bad haircut is more of a public risk than food poisoning.