Fact #1

At my last doctor’s appointment I weighed 128.5 pounds.  It is very difficult to keep weight on.  

I might be done with Facebook.  I'm tired of seeing all of the awesome things people are doing.  

I am Cryptic

I was only thinking of myself.  Easy to do.  Maybe I was self-centered, or filled with pity, or more likely it was all I could handle.  But I was wrong.  

There are others.  I see them every day.  They put on a face.  For me.  With me.  

We pretend.  We make believe.  We live in the moment and block out everything else.  It works like a charm, sorta.

I haven't made peace, but I have found a way to cope.  Sometimes it's a selfish method.  Now I see that.

Let’s Give it a Shot

I’m so tired of using the past tense.  Or speaking on a topic in the present when all I know is based on the past.  Sometimes it seems like everything that is interesting and exciting in my life has already happened.  I know that is not the case, but it certainly feels that way.

There are so many conversations to which I can contribute based on things that I experienced years ago; things I can no longer experience.  When my friends talk about a hike, or a bike trip, or a round of golf, I act interested because I am interested.  For the moment I can pretend it doesn’t bother me; it’s not that hard.

But I’m tired of the past tense.  An old man might enjoy speaking of his life as a distant memory never to be seen again, but I am not that old.  I cannot look at things that are five years passed as if they were fifty.  He looks at his past with pride and a sense of normalcy; I look at mine with pride and a strange sense of disconnectedness.

Let’s talk about what’s new and what’s coming.  Let’s look forward.  Let’s embrace what we have what will be.  Let’s give it a shot.

Always Remember

Statistics don't matter to the individual.

Just a Thought

No matter how many times I am shown evidence to the contrary, I can't stop thinking Why am I the only one?

Untitled

If another person asks me if I still play my saxophone I might lose it.

This Time of Year

For years I’ve kept a red and white “No Parking” sign from the Vermont City Marathon.  In January of 2005 I moved into my first apartment and it was there, taped in the window of the back door.  I had seen them before, lining the streets on Memorial Day weekend, but I stopped and took a closer look.  Its temporary paper date read May 25, 2003. 

In May of 2003 I had just returned home from college and had never participated in, or watched the VCM. Running a marathon was unfathomable to me, but when I found out my brother planned to run his first marathon, I had no doubt.  I hardly gave it a thought at all.  Running wasn’t my gig; I didn’t know much about it, but it didn’t take much thought to know that Nick would not fail. 

Now, when I find out someone is running a marathon (and especially their first marathon) I am impressed and happy for them.  It takes a commitment and an attitude of strength to both prepare and succeed on race day.  I feel prideful for them.

In 2003, I thought, “Oh, you’re running the marathon?  Cool.  That’s not for me.”

I’ve watched several marathons and seen many a familiar face battle through, most reaching the finish line, but I didn’t go in 2003.  I don’t know what I did that day, but I didn’t make it downtown.

To no one’s surprise, Nick finished the marathon.  He ran the 26.2 miles in a time of 2 hours 46 minutes and 21 seconds.  He came in 19^th overall, 22 minutes behind the winner.  He was the 5^th Vermonter to finish and a month after his 21^st birthday, finished 3^rd in his age group. 

I never asked him what it was like, never showered him in praise, and I wasn’t there to greet him at the finish.  I’m not even sure I was impressed; “Nick did well in the race” was not a story to me. 

Twelve days later I woke up and he was gone.  

Part of My Life

I go to a “clinic” appointment every three months.  It used to be every six months.  I take the elevator down a flight and check in at the desk before making my way to the waiting room across the hall.  If I am on time I don’t wait long.  I am greeted with a smile and more recently a hug and walked down the hall to the scale.  It is a large scale meant to accommodate a wheelchair.  I am offered a hand as I step onto its steel base.  My weight is read and we compare to previous visits.  If it has stayed the same or increased all is well.  If it has decreased I am laughingly told that I will be hearing about that later.  And I do, from nearly everyone.  I will be reminded once again that people who are slightly overweight have much better success with ALS. 

Notice I did not say, “In their fight with ALS”.  I do not look at it this way.  As far as I can tell, my doctors and nurses do not look at it this way.  Occasionally people tell me to “keep fighting” or some variety of this.  If I knew what that meant; how to fight ALS, I would.  Outside of eating lots of “calorie-rich” foods, stretching, and light exercise, the latter two of which are mostly to maintain flexibility rather than fight any sort of deterioration, there is little I can do.  I try to keep a positive attitude; that’s how I fight.

I sit in a small windowless room lighted by office-building fluorescent tubes covered with a colorful, wispy-clouded blue-sky piece of plastic.  The room resembles the average doctor’s examination room except that instead of the counter-high exam table, it is equipped with a foot-pedal operated, bench-level padded table.

The room opens into a large open space where a number of separate areas, mats, and machines are dedicated to providing a variety of physical therapy activities.  I always wonder what each person is doing, working one-on-one; some walking awkwardly, some lying on mats, others riding stationary bikes.  I imagine each is recovering from some injury, or hoping that a bit of physical activity might help them maintain some abilities in old age.

I stay in the room.  There is a paper beside the wide, wheelchair accessible door.  On it appears my name along with a list of my visitors.  Each crosses off his or her name following our session.  My day is long, six or so hours on average.  I see a nurse, occupational therapist, physical therapist, social worker, a representative from the MDA, speech therapist, respiratory therapist, palliative care “ist”, nutritionist, spiritual guidance “izer”, and a neurologist.  Excuse my jokes; I’m not always sure of the proper terminology. 

I don’t always see them all.  Sometimes, in the interest of time and collective sanity, I am able to avoid at least a couple of the following: MDA rep, palliative care-ist, respiratory therapist, and spiritual guidance-izer.

They come see me one at a time, in no particular order.  They ask questions; how am I doing with this or that?, have there been any falls?  That’s a big one, falls.  They don’t want me getting hurt.

This is of course after I have returned the pre-clinic questionnaire I am emailed every three months.  At first this was administered over the phone, but after accepting the low likelihood that it would be completed in this fashion, (I didn’t answer or call back) email was suggested as an alternative.  The questionnaire includes 24 questions ranging from “How is your speech?” to “How many pillows do you use at night?” I use copy and paste.

They ask about my medications.  Am I still on this and that?  Am I depressed?  Have I tried an antidepressant?  What vitamins am I taking?  Am I drinking lots of water?

My visits to clinic are really a checkup in every sense of the word.  Each person who comes to see me is checking on how I’ve progressed.  I am asked question after question and tested in multiple areas.  They test my strength; legs and ankles, shoulders, arms, and hands.  They take my blood pressure and my pulse.  They test my lung capacity, my ability to chew and swallow, and how I do with liquids, both with and without a straw.  They ask me my height every time.  

They are comparing me to previous visits, charting my weight, strength, flexibility, breathing, and less scientifically, my attitude.  I am told by most all of them to be careful with one thing or another.  I am made aware of the typical pitfalls.  I am constantly told, by people who have seen the disease, what it is like.  Usually I can see the value in their experience, sometimes I want to explode.

We discuss new trials, new drugs, and new studies on old drugs.  We say things like, “I read something online…” and get the standard, FDA-approved answers.  We search for something new and are told, “There is not enough research”, “It will cost a lot”, and “It may do more harm than good.”  We are deflated.

They ask if I am having trouble with eating, or typing, or rolling over in bed, and they try to offer creative solutions.  I shudder at most of them:  devices to help with buttoning a shirt, opening a jar or using a pen or pencil; silverware with bigger handles and braces to keep your feet parallel to the ground.  I am shown catalogs filled with “independent” seniors and brought samples to take home and try.

This part makes me sad every time.  Accepting something new is never easy, and for me the acceptance never stops.  But I can’t skip forward; I need to keep the acceptance moving as slowly as possible. 

When it is over we rejoice in that fact alone.  We leave with a new piece of advice, a new danger to be mindful of, and a clearer picture of what lies ahead.

There are no solutions to my problems, just half-assed work-arounds.  Some doctor’s visits bring a sense of hope; not these.

On the bright side, at each appointment I have my mother, and now Hilary at my side keeping me company, showing an interest when I don’t, and supporting me all the time.  I am lucky for that.

In Case You Wanted to Know More About Me

It’s no surprise that in groups and social situations I speak less frequently than in the past.  There are so many reasons for this change. 

I have a tough time being heard over others and over background noise.

I am so tired of people not hearing me, or misunderstanding a word I’ve said.

Not to repeat myself, (oh, the irony) but I hate repeating myself.

I don’t have as much to say.  I don’t have as much going on in my life as I once did, or as you do.  

I’m not as willing to share stories about my cats as some others may be.

I am not apt to launch into a long story, even if it is pertinent to the situation.  I am more likely to bring up a topic or story, and then defer to a friend with a common memory to tell it.

Humor (my specialty) depends largely upon delivery.  My delivery is terrible.

Many times I would rather be a listener, ask questions and allow others to speak.  What can I say?  I am old and wise.

Another Quotable Quote to be Quoted

David McCullough is an excellent historian and writer.  If you have the time and desire to commit to reading any of his books, you will be pleasantly surprised by his skill as a writer and impressed by the rich history you will discover.  He brings historical figures alive with primary-sourced material, giving new life to words such as these, written in a private journal by Theodore Roosevelt regarding his older brother Elliott.

As soon as we got here he took some ale to get the dust out of his throat; then a milk punch because he was thirsty; a mint julep because it was hot; a brandy smash "to keep the cold out of his stomach"; and then sherry and bitters to give him an appetite.  He took a very simple dinner – soup, fish, salmi de grouse, sweetbread, mutton, venison, corn, macaroni, various vegetables and some puddings and pies, together with beer, later claret and in the evening shandygaff.

Fancy.

Empathy is a Made-Up Word

There is a drug called Charlotte’s Web that is legal in Colorado and nowhere else.  It is an incredibly effective treatment for epileptic seizures and is legally available in but one state.  I don’t remember any of the Pfizer, Astra-Zeneca, or Merck products looking to solve the world’s small bladder, varicose vein, and impotence problems being available in limited areas.  Don’t get me wrong, if I couldn’t get it up, I would gladly take a drug for that, but while corporations have tackled the type of First-World problems that get Americans ridiculed, the availability of a potentially life-saving drug has been delayed far too long.  I say delayed because I don’t know that drugs like these won’t become available in the days to come; I hope they will.  And I say potentially because as the critics will tell you, the testing on these “healers” has been limited.

And while onlookers can see the big picture, await the testing, and applaud generously when government finally concludes in their favor, the individual suffers.  The masses may be okay with waiting out the appropriate processes, but those with a horse in the race would like to see the finish line before hope is lost. 

And testing has been limited, forcing even the most ardent of supporters to urge caution.  Potential might not sound like much, but for those with little hope, for those without control, it means everything.  Potential is better than nothing, and when you feel you have nothing to lose, the unknown that might help is a hell of a lot better than the known that doesn’t.

Imagine this, imagine you’re a parent, and you watch your child struggle every day in pain, and you know there is little you can do.  I believe that is that sort of thing that could drive a parent to insanity.

Now I understand that empathy is a made up word, and sympathy is hard to come by, but if it were me I’d do right by those who suffer.

And I don’t want to hear that It’s just not possible, or that We’re not there yet, or that These things take time, or There’s a lot of red tape involved.   Make an exception, make it happen, get off your infallible high horse and do some good. 

There is no doubt in my mind that if I were one of these parents I would break the law.  I would drive, fly, or walk to Colorado to get this drug.  I would do whatever I could for my child and for myself.  And if I was pulled over, if I was caught I would laugh whole-heartedly.  The idea that I was doing something wrong, that I was an evil-doer to be locked up with those who have inflicted harm upon others is so utterly ridiculous it defies reason. 

And then I imagine I’m the cop.  I took an oath to uphold the law; to be a moral man.  If it cost me my career I wouldn’t arrest you.  How would that make me the good guy?  Secretly I would hope it might come to that. 

Whether I was the cop who refused to do his duty and arrest a user of illegal drugs, or the holder of those drugs taken into custody of the state, I would raise such a stink it would almost make the injustice worth it.  I would use the opportunity to build momentum for change.  I would be proud to have done such good.  And in the meantime I would painstakingly watch as those who suffered continued to wait.  I would be immersed in the struggle; nothing could be done fast enough to relieve my pain.

Perhaps it is easier to ignore.  It is easier for the masses to ignore the problems of the few.  For this is a drug for the few.  It is not the cure to cancer.  It will not positively (or negatively) affect the lives of the masses.  But to the mother, the father, the family of a suffering child, that doesn’t matter.  Statistics don’t matter to the individual.  One in ten-thousand or one in a million is still one, and for that one, the fact that he or she is the only one doesn’t make it any easier, instead it makes it harder.

Moron Drugs

Have you seen those drug commercials where the spokesman warns of possible involuntary muscle movements?  He urges those experiencing this side effect to call their doctor immediately “as they may become permanent”.  This is somewhat shocking to me, (almost as much as the drug which warns not to combine with grapefruit or its juice).  As an aside I also like the drug that “may cause diarrhea” which is normal, or “severe diarrhea” which requires you call your doctor immediately.  You could also stop taking prescription-strength laxatives and instead eat something that doesn’t turn your insides to cement.

Back to my point, I experience these sorts of uncontrolled muscle movements often and it goes without saying that you don’t want to.  My latest annoyance; off and on over the past few days my right pinky has enjoyed jumping around and straightening itself every few seconds.  Most of the time these types of things are merely an annoyance, except when I’d like to be sleeping.

It’s amazing the casual nature with which this severe side effect is stated in the commercial.  Of course the drug company is a) required to state the known side effects (though it appears not all of them) and b) would rather not cause more alarm than necessary.  But I still find it distressing.  As far as I’m concerned most drug commercials should say “Taking this drug will fuck with your body in ways you couldn’t have imagined before.  Good luck!”

Tribute to George Thorogood - (I Drink Alone)

I don't often get angry, or maybe I live in a state of perpetual anger; I'm not sure.  But when I am told that in most cases social security an/or disability income is not taxed (and therefore taxes are not withheld) and upon finishing my taxes I owe just shy of a combined $1000 to the federal and state governments, I get a bit miffed.  And there's no whiskey in the house...

What's in a Closet?

For 5+ years I wore a shirt and tie five (okay four on the tie) days a week.  I've worn a button down shirt five times in the last year.  Three of those times were for weddings.  I have a lot of really nice clothes, it's just too much of a hassle to wear them.  Instead I wear jeans and a tee shirt most every day and I go without socks as much as possible.  Many, perhaps me included, would choose this alternative, but I wasn't given the choice.

In My Head Again

There are a number of phrases I find myself repeating in my head.  One of them is as follows:

My body has given up on me.

I Made a Joke

What happens when the definition of a word becomes the opposite of what it used to be?

The world has literally come to an end.

I Look at Pictures

I look at pictures, on the fridge, on the wall, on my laptop, on Facebook.  I feel what anyone feels.  I remember the moment, the times.  I see myself and I see others.  I remember my life in that moment.

I remember weddings, trips near and far, and simple times with good friends.  I feel a sense of happiness and sadness together; I feel a sense of longing.  Remembering the past the way I choose to; good times, but also good times passed.

I always come back to the same thought.  I ask myself where I was in my life. 

My freshman year in college, 2002-2003 at Villanova, I knew a kid named Paul.  We all drank a lot, but Paul would end up on the floor, lying face down or crawling on the hallway carpet.  I didn’t get it.  It seemed to me that he hadn’t had any more to drink than the rest of us, yet there he was, hardly capable of standing.  And there was nothing wrong with Paul, at least not physically, I guess he was just a sloppy drunk.

I never understood how that could happen.  It seemed to me, and admittedly my opinion is one of an inebriated mind, that I could still run and jump, I could still execute complicated physical tasks having had several too many. 

One day that changed.  I began to notice that alcohol, in significant quantities, was affecting me differently.  I felt that my balance wasn’t what it used to be; my drunken balance that is.  I attributed it to getting older, or having a lower tolerance for the stuff.  I didn’t feel that this was abnormal, just abnormal for me.  I was still within the normal realm of drunken coordination; I wasn’t Paul.

Of course as time went on these changes became clearer.  I found myself claiming repeatedly, “I’m not that drunk.”  And I had begun to see these changes seep into other areas of my life.  It became harder to attribute my experiences to the effects of alcohol. 

When I look at photos, I think of one thing first:  Am I looking at the old me, before I experienced any signs, or had I noticed changes?  When was this?  Which me am I looking at? 

And I always know the answer.

Ambidextrous

The use of a dominant hand creates strength and coordination differences between the right and left side.  But I have become ambidextrous.  I have different amounts of strength and coordination in different muscles regardless of where those muscles reside.  If my left shoulder is stronger, then I use my left hand to take dishes from the dishwasher and lift them to their space in the cupboard.  If my right hand is more coordinated, then I use it to eat soup.  If I have to switch arms I do.

As long as I can do what I need to, none of this matters too much.  

Draw Your Own Conclusions

I went to the doctor’s the other day.  We thought I might have strep throat and decided to see the on-call doctor, it being a Saturday.  I called ahead, providing my name and the reason for my visit. 

A few minutes after my arrival, I was called upon by a nurse who walked me down the hall, stopping to weigh me before sitting me in a chair in an examination room to ask me the reason for my visit.  I told her I had never had strep throat but that having seen my throat, my girlfriend thought I should get it checked out.  She said nothing but proceeded to take my blood pressure, and swab my throat.  I was told that the doctor would be in shortly.

When the doctor arrived he asked me the same questions and felt my throat for swelling.  He then sat down, laptop in hand, and asked me if I had any health problems, or maybe he said medical conditions.  I looked at him and said, “Well, I have ALS.  But other than that, no,” and smiled.  “Oh” he said, looking as if he was trying to conceal his surprise.  “Are you taking any medications at this point?”  After providing him with the names of my medications he instructed me to get up and onto the examination table.  I stood up and looked blankly at the table until he offered me a stool.  I stepped on the stool, grabbing the table with both hands, and climbed on, shifting my weight away from the edge, squirming into a stable position.

The doctor listened to my breathing, used a flashlight to take a look at my throat, and told me I didn’t have strep throat.  He checked his laptop for the results of my throat swab, (“just to confirm”) saw that they weren’t available yet, and told me I could get down.  He had moved the footstool away and after a few moments of watching my hesitation, offered it back to me.  I climbed down and he left the room to confirm the swab results. 

He came back and confirmed that it was only a virus and that I would be fine.  He told me of several remedies for the pain in my throat and after a brief discussion, sent me on my way.

Basketball

I went to the gym to play basketball with a friend.  It was February and the drive was especially cold.  After changing into my gym shoes and trying to rub my hands together for warmth, I dribbled the ball across the court to the far basket.  My hands hadn’t warmed at all; they felt like bricks as I dribbled.  I had no feel for the ball.  I must’ve looked like a five-year-old who had never dribbled a ball, slapping it awkwardly.  It had been a while since I picked up a basketball, everything felt so foreign.  My feet were in a cold sweat, hands cold and dry as we began shooting around.

My shot felt weak, like I needed to use my legs, jumping hard just to assure the ball reached its goal.  After a few minutes of “shaking the dust off”, i.e. warming up, we began a game of “taps”.  Taps is a game in which one player shoots foul shots while the other “taps” into the basket, any misses.  It requires the “tapper” to jump, catch the ball, and shoot the ball before landing.  I quickly learned that this was asking a lot.  There was a time when this game came as easily as anything, but that time had passed. 

When I found myself on the foul line, I learned that I barely had the strength to reach the basket without jumping.  Watch a basketball game, be it high school, college, or pro, no one over the age of eight jumps on a foul shot.  But I did.  I had to.

Later we played “21”, essentially a one-on-one game that also includes foul shots and a three-pointer at the end.  I found myself a step slow on defense, and my hands still felt like bricks when handling the ball.  I tried to execute moves I was comfortable with in the past, and failed.  I tried to drive past my defender, dribbling with my right (dominant) hand, but found that when I tried to collect the ball to attempt a layup, I couldn’t get a handle; the ball bouncing forward, out of bounds and into the wall. 

When I or my opponent brought the ball into the post, creating a bit of physicality, I felt okay with the slowed down pace, but soon learned that this too brought challenges.  I backed down my defender, using my body to shield him from my dribble.  I leaned in, pushing him closer to the basket and suddenly he moved.  He slid his body to the side and I backpedalled awkwardly towards the sideline.  It felt like slow motion as I first lost my balance, then control of the ball, then watched helplessly as my legs struggled to try to catch up with my momentum.  They didn’t; I fell, sliding backwards on my butt. 

I’m not sure what my friend and opponent thought; I didn’t ask.  Likely he was as confused as I.  Soon after, I called my doctor to set up an appointment.  

Pleasant

I like getting coffee.  It is so easy.  Breakfasts are nice, but the crowds, the task of eating a hot breakfast (while it’s still hot) makes for a different experience.  There are too many distractions for me.  Instead I enjoy the quiet simplicity of a coffee shop. 

I enjoy spending an hour or two in slow motion.  I enjoy conversation that isn’t interrupted by the arrival of plates of food.  I enjoy sharing a newspaper and the discussions that ensue.  I enjoy watching and listening as people come and go or sit for hours with laptop and headphones.  I am endlessly entertained and often bewildered by the plethora of coffee orders I hear.  I ask my partner (and former barista herself) what they are, hear stories of her days behind the counter, and learn a thing or two.

Sit, chat, read, listen, look, sip.  All things with which I have little difficulty.

More Contrasts

I remember growing up we were always asked what sorts of things we enjoyed doing.  Whether it was on the first day of school, upon joining a new group, or in a conversation with a new acquaintance, that question always came up.  It seemed like everyone but me always included one thing in their response; hanging out with friends.  I always wondered what that meant.  It seemed to me that any time I spent with friends was spent doing something, not just hanging out.  Riding bikes, climbing trees, building forts, playing catch or whiffleball or sledding in the winter.  Even when we were inside we were usually playing Nintendo or later Sega Genesis.  Playing basketball in the driveway might have been as close to hanging out as anything else; there always seemed to be a lot of standing around. 

I never really understood what kids meant when they listed “hanging out with friends” as one of their favorite activities.  I always had something to bring me together with my peers; something we all wanted to do, and something for which we needed each other, whether to round out the team or strictly for companionship.  There was always an activity to bring us together beyond hanging out.

As I got older the idea remained and although a few sedentary activities (like drinking or watching sports) were added to the list, many of my relationships still revolved around physical activities like hiking, skiing, golf, or basketball. 

These are aspects of my social life I will never replace.  I struggle to think of what to do with people, whether it is my friends or my girlfriend.  You learn a lot about someone on a long hike or playing a round of golf.  Things like that make for easy companionship.  Without those experiences that were always such a big part of my life, I feel empty, I feel unfulfilled, and I know that feeling is here to stay.

Use Your Head/You Get What You Pay For

In a restaurant, it is okay to ask if your meal is sourced locally.  

It is not okay to be a pretentious asshole about it.  

Camping, Batteries, and the Human Lung; An Excerpt

Most of our campsites came equipped with a gravel tent site, and unfortunately our first night’s sleep in a tent would be done without our queen sized air mattress.  After a short discussion including the phrases, “It’s almost big enough” and “Maybe we can force it”, we determined the mattress (60x80x9) would not fit in the 60x72 inch tent we borrowed.  Upon setting up the older, shittier, and larger tent we determined that it was plenty big for our mattress.  However we hadn’t thought to buy batteries for the air pump.  I hadn’t even thought of an air pump, but upon opening the cardboard mattress box and dumping out the inflatable, I saw it.  Turns out the device took six (6) C batteries.  I can’t remember the last time I bought C batteries.  Likely I never have. 

And if you think we should, or even could have blown up the mattress with human lung power alone, let me give you the facts.  A queen sized air mattress takes 43,200 cubic inches of air to fill, less perhaps the thickness of the plastic, assuming the dimensions are measured on the exterior.  That comes out to about 708 liters or 187 gallons of air.  The vital capacity, which is the maximum amount of air the average person can expel from the lungs following a maximum inhalation, of the average adult is between 3 and 5 liters of air.  That means that for the average adult, (and let me add that Hilary and I are most definitely on the smaller side of average) it would take between 140 and 236 maximum exhalations to fill the mattress.  As there were two of us I could divide these numbers in half, but my travel partner (in her infinite wisdom) scoffed at the idea of even trying.  

Back on the Home Front

“…In the service you just don’t use any adjectives, you forget all your adjectives and just use one or two.”

Interviewer: “Like?”

“Like I’m not gonna say.  My wife would come down from heaven and hit me on the head.”

WWII Vet from Mobile, Alabama talking about watching his mouth when he got back home

The Handicapped shop at Walmart

There are empty handicapped parking spaces everywhere you go.  

Then you go to Walmart.  The handicapped shop at Walmart.

Then I Woke Up

I had a dream last night.  I was in a spaceship with a friend.  He wasn’t human, but he was my friend. 

A door broke off the back wall and was sucked into the distance, a gaping hole left behind.  It was peaceful for the moment but we knew we were going to die.  We didn’t panic because there was nothing we could do.

We talked about our feelings at this moment.  I told him I was relieved.  I no longer had to struggle; I could rest.

He disagreed and told me so.  He reminded me of all that I would miss.  He told me of his life, the people and the places he would leave behind.  He almost convinced me that I was wrong, but I wasn’t so sure.

And then something happened.  What it was I don’t know, but we were saved.  We were going to survive.  My friend rejoiced, in tears with happiness.  I felt uneasy.  I thought it was over.  I had made my peace.  I was almost disappointed to be wrong.

The World is not Made for the Handicapped

The world is not made for the handicapped.  What was easy becomes complicated.

There are more questions than answers.  Most of them start with how and end with I don't know...I don't want to think about it.

Every answer is a compromise, a forced evolution.  Every answer is another move in the wrong direction, away from normal, away from familiar, away from independent.  And into something else...

Valentine's Day Special

Had a great evening with my valentine.  Braved the roads and made it to Michael's on the Hill for an amazing dinner (and some great wine).  Laughed together at the Masshole that couldn't get up the driveway, chatted with the only other Vermonter in the place (the waiter), spent too much money, and stared at the smile across the table.

And she even cleaned Phoebe's puke out of the carpet.  What a woman!

After a Diet of Caviar...

After a diet of caviar, you like to get back to ham and eggs.

-White House aid comparing Franklin Roosevelt to Harry Truman

One Dollar

There are 293 ways to make change for a dollar.

A Good Day

I, Ollie Stewart, of sound mind and fairly sober character, do solemnly give my word that I have never been kissed so much in all my life.  Almost every woman I meet on the street stops and kisses me on both cheeks.  It is a beautiful custom.

-American G.I. after the liberation of Paris from Nazi Germany

Dreaming of Reality

I have dreams in almost every reality imaginable.  But in every dream I am reminded of my disability.  I see people who have long since passed and experience things that would never happen.  Times meld together, but one thing doesn’t change, I am the me of today.  I cannot run free like the others.

More on the French

As to the consumption of wine there is little doubt…The bottle dumps at Colon were every bit as high as a house.  The foul alley behind Front Street was actually paved with wine bottles turned bottom-side up and became famous as “Bottle Alley.”

and 

The actual digging of The Great Trench – La Grande Tranchee – began at Emperador on Friday, January 20, 1882, with much champagne and dynamite.

From "The Path Between the Seas" by David McCullough

19th Century Baller

When he was taken to court for his advocacy of free love, he appeared in Hessian boots and a velvet cloak trimmed with ermine.  Asked to defend his behavior, he stood motionless and silent, then explained that he wished the court to have a quiet moment to reflect on his beauty.

On Prosper Enfantin, from “The Path Between the Seas”

People

Indonesia has the world's fourth-largest population behind China, India, and the US.  As of this moment its population is 251,573,713.  As an aside, Indonesia is not very big.

Deer in the Headlights

I can’t help but think that I have some skills to pass on, something that I’ve learned in my life.  As I search for meaning and wonder what it is I can offer, what I can create for the world, I struggle.  Conviction was never my strong suit. 

I’m not sure whether it is fortunate or damaging to my psyche, but I seem to have come to a place where I evaluate the worth of my actions.  I wonder whether it is worth my time to do x, y, or z.  I overanalyze. 

I find I want to create something lasting, and to a point writing has allowed me to do that, but my thoughts are fleeting and incongruous.  I have ambitions for something bigger, but what?  

Live Life to the Fullest

I hear this a lot.  If only I had unlimited resources and physical abilities I could do it.  Actually I’d settle for one of the two.

Roadblocks (Tribute to an Asshole)

I hate it when people do nothing but put up roadblocks.  It is so easy to criticize, and it is so cowardly.  Whether in business or in life, standing in the way, saying “You can’t do that” without offering a solution is beyond ignorant.  If you can’t tell me why, or offer a realistic alternative, you are useless.  Go ahead and read me the rule again; make yourself look dumber.  And if your answer is “It’s black and white” then I don’t want to hear it.  Nothing in this world is black and white.  Everything is gray.  Work with me.   Show me you’re not a robot with a stop sign.  You know the rules, I know what I need.  Show me you’re not at dumb as you look.  Let’s find a solution. 

Fact

At least 50 Vermonters served in the Civil War, on the Confederate side.

Pain and Weakness

You have pain or weakness that you didn’t have yesterday, you wait for it to heal or call a doctor.

I have pain or weakness that I didn’t have yesterday, it might be here to stay.

Winter

I always thought as I got older I would become less enthusiastic about winter.  I didn’t expect it to happen so fast.  I will list my grievances.

Cold:  Cold means a lot of things.  It means bundling up; layers of clothing, warm socks, boots, heavy jackets, hats, and gloves.  As a kid I hated how long it took to get ready to go outside in winter; now I hate it much more.  I hate it because it takes me so much longer to get my socks on, zip my jacket, and pull my gloves on.  I haven’t laced up shoes or boots in what feels like forever.  I made it through summer and fall with a pair of Crocs, and now I’m into a pair of Merrell slip-ons. 

I encounter an interesting dilemma in the winter; wear mittens or gloves and lose hand function to the bulky layers of fabric, or don’t and lose hand function to the cold.  I won’t go into the hassle of getting the mittens on my hands; it involves teeth.

Have you ever experienced slurred speech or stiff muscles in the cold?  Muscles don’t work as well when they are cold.  My hands stop working almost entirely.  Let me explain what I mean.  You know the debit card machine at the grocery store?  Imagine having trouble gripping your card enough to swipe without causing a “read error”.  That doesn’t take much strength.  And of course grocery stores are always cold. 

Snow:  In itself snow isn’t so bad, in fact it can help make cold temperatures more tolerable.  But then a layer of snow means, at the very least walking on uneven ground.  This is another challenge I wouldn’t have seen coming.

Ice:  I’m fucking terrified of ice.  Okay I’m not really, but I should be.  I remember the days when I looked at an icy driveway as fun; getting a full head of steam in the garage to go sliding across the ice “risky business” style.  I should be terrified because there is a good chance I could fall, and slam my elbow, knee, hip, wrist, or head on the ice.  Sadly I’m scared more that someone will see me fall, or catch me floundering on my hands and knees, and “overreact”.  I really don’t want that kind of attention.

I am always thinking about the places I go; the potential hazards I will face.  Winter adds yet another layer of concern.  All of this means I get out less in winter; not what I need.  

I very much understand why older folks move south for the winter.  It’s a matter of personal safety.

What kind of guy likes slow dances?

This Kind

Something Different

I’ve spent the last several months bitching and moaning to you about all of life’s little problems.  More specifically I’ve told you about my problems with the hope that sharing my grief, my anger, and my frustrations might bring some sort of solace.  I’ve tried to show you what it’s been like so that I might feel closer to you during a time when I feel myself less and less like those around me. 

I’ve spent all this time and energy trying to convey all that I’ve lost.  At the start of this New Year, for at least a moment I’d like to talk about a few of the good things in my life.  Bear with me, this isn’t my strong suit.

I have, and have always had amazing parents that would do anything for me.  They have repeatedly been there for me in 2013; made me countless meals, been by my side at countless doctor’s appointments, helped me move twice, opened their home to me, been on the other end of every needy phone call I’ve made, and welcomed Hilary into their lives with the utmost warmth and enthusiasm.

I have friends that endlessly entertain me.  Seriously you guys are a lot of fun.  I couldn’t ask for a better group of friends.  I’ve taken a lot more than I’ve given over the years, whether it was a homemade meal (you know who you are) or a place to crash (you know who you are) I’ve been lucky to have you.  You’ve been like family to me for years.   

In 2013 I met, or re-met as it were, an incredible person who has become my girlfriend, my roommate, and my best friend at a time when none of that seemed possible.  I never thought I would find someone so compassionate, patient, and warm.  I’ve heard relationships are work; I never imagined it would be so easy.