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.