life, death, and Disney

It occurs to me that next month I will turn 24 and, barring some unforeseen catastrophe, knock on wood, the year after that I’ll be 25.I do not mean to imply that when that happens I will be old it is simply a statement of fact. However, with that statement is an epiphany of sorts, a solidifying of a well-known truth into inescapable concrete fact.  On May 20, 2010 I will have officially outlived Anthony.

As I said the fact itself does not surprise me, in fact I suppose it could be argued that I had outlived him from the second his family made the choice to remove him from life support when I was 10.  Perhaps it would have been better to say that next year and every year after I get the chance to experience life one day longer than Anthony ever got. That statement, so simple to put in print, carries with it a daunting sense of responsibility. I find myself holding my breath and praying in earnest that I won’t, to use a phrase uniquely mine, “screw the next 25 years up royal.”

I realize some back story might be a little bit helpful in explaining my trepidations over turning 25 which shouldn’t be all that scary for most people you would think.  When I was 10 my dad managed a comic book shop for a friend, and because my family had recently chosen to home school us my younger sister and I got to go to work with my dad most days of the week.  I remember bagels and cream cheese breakfasts from a coffee shop around the corner and, from the same coffee shop in winter hot chocolate with cinnamon, the memory or rather memories that stand in sharpest relief when looking back are those of Anthony.  Tall, (at least to a 10-year-old) thin and lanky with red hair I don’t think I ever saw him without a smile on his face.  I didn’t realize then it might have been painful for him to smile until shortly before his death.

The other thing of immediate note about Anthony was that you never saw him without a baseball cap, one baseball cap in particular.  It was impossible to separate him from a baseball cap with the seven dwarves stitched into it, I know, I tried, repeatedly. Yes, as in Walt Disney.  It became a game between us.  I was determined to snatch his hat and play keep away with it until he left and he was equally determined that I wouldn’t get it. It should be noted that in the end he won.  I never achieved my goal though he appeared to receive no end of enjoyment from thwarting me at the last possible second.

Dad also had several sets of foam swords covered in sparkly silver cloth which people would use to jokingly challenge each other to duels with, both inside the store and outside in the parking lot.  In my scheming for his hat I grabbed one and attempted to knock his hat off his head. Well he couldn’t let the insult go unchallenged so of course he grabbed one and a “sword fight” ensued.  Most of the time he would deliberately “handicap” himself and fight on his knees from the beginning though the few times I complained that he was making it too easy for me he would stay standing for the five or ten minutes it took him to make few halfhearted feints pretending to block my clumsy attempts at taking his knees out from under him, he always ended up on his knees anyway, and the end of that particular game usually saw him sprawled theatrically on the carpet, eyes rolled back in his head, tongue lolling out of his mouth, twitching in the throes  of an excruciatingly painful “death” which I had, of course, dealt him.

I believed myself to be the greatest wielder of the blade that there was or ever would be.  In my euphoria over my magnificent victory I temporarily forgot that my goal of obtaining the sacred hat had once again been thwarted, by the time I remembered (which was about time Anthony got up off the floor) and before I could become indignant at being duped… again… he said the one phrase that proved that no matter how sharp the blade that wins the battle subterfuge most often wins the war, “would you like a Dr Pepper?”  Well now I couldn’t swipe his hat, not with a clear conscience!  On the rare occasions that he won I would get myself a Dr Pepper and pay for his Mountain Dew.  On further reflection I’m almost certain it was rigged in my favor.  No” death” is too theatrical if it puts a smile on a child’s face apparently.

I remember almost down to the exact second I realized that death doesn’t care how much life you haven’t lived, it’s coming on its own schedule and then there is nothing you can do about it. Anthony had just left for the day and watching him walk out the door something clicked in my mind, “Dad, is it just me or is Anthony’s hair really brittle?”I knew that brittle hair was often a sign of sickness so the next question came out and sort of a breathless rush “is he sick?”

I don’t remember Dad’s answer verbatim but I remember the gist of it.  Yes Anthony was very sick even though he didn’t look like it most of the time. Anthony had cancer.  What kind?  (Me) Leukemia, blood cancer.  (Dad) Can he get better? May be for a little while.  He has been sick for a long time, since he was your age. Will he die?  Sigh. Probably.

If I had been able to stand I would have stumbled back in shock. I knew people my parents’ age could die from things like a gunshot wound (I knew this because we had recently had a friend die of one) but to die from illness was still the sole province of the elderly, and nobody I knew was that old.  It wasn’t a matter of being sad, I couldn’t even be that.  At 10 years old I was faced with a brief but still unsettling glimpse of my own mortality.  If a young man could be sick from the time he was my age still not get better then what stood between me and death? The answer I came up with scared me then and, if I’m completely honest with myself, scares me now.  The answer to a question that no 10-year-old ever expects to think about is: absolutely nothing. That is a very sobering thought no matter what age you are.

Life continued on, I never said a word to Anthony about his cancer and he never brought it up.  Time flew past as it always does when you’re dreading something though on the surface nothing had changed, unless you can count the fact that my efforts to steal his hat had redoubled.  I was determined to show him that even if his was falling out from chemotherapy (and it was) that I didn’t care and neither would anyone else.

Fast-forward to early spring. Somebody had rented a movie and bought hamburgers for everyone at the shop.  Right at the beginning of the movie the bell over the shop door rang and Anthony walked in. There are some moments in time that of forever imprinted in the mind of a single person.  Anthony’s last conscious moments on this earth are burned into my mind with all the permanence of a cattle brand.

To my eyes it was a miracle he was even standing there much less walking under his own power.  In the short time since I had last seen him the leukemia had taken hold with a vengeance. For the first time his bright laughing eyes were clouded over with pain and dull.  He had drawn in on himself and his skin, which now appeared almost as brittle as his hair, was paper thin and  in that moment he reminded me of a little boy wearing a coat much too big for him.

Despite this he laughed and joked with everybody and looked at me with mock indignation and shock when as he was turning to leave I jokingly asked if he thought he was escaping without a hug. Anybody who knows me at all knows that if I choose to I can hug hard enough to knock the breath out of you, when I wrapped my arms around him I hugged him with the force that I would a very small child and still felt as though I was teetering on the edge of breaking him.  All the same I held on for just a little longer than I normally would because a small voice told me this would be my last hug from him. He was smiling as he went to the parking lot, got in his car and drove home.

That was the last time I ever saw Anthony.

I found out on the day of his funeral that he made it home that night and went to be. At some point in the very early hours of the morning he slipped into a coma and was transported to the hospital, where he was kept alive via life-support for the next two weeks. I didn’t attend the funeral but Dad told me that they buried him with his hat.  For some reason that made me feel better.

It’s been over a decade since Anthony died and some things have changed.  Dad doesn’t run the store anymore, and the coffee shop around the corner has been closed for quite some time.  I still give hugs that could endanger your life but I’m in college now and have been for several years.  Right before spring break the first semester of my freshman year I decided to cut my hair, which I had not done since my senior year in high school and I knew exactly what I would do with it.

That was the “first haircut of the rest of my life”.  The lady who cut my hair that day took off 18 inches, and instead of littering the floor to be swept up and thrown away later it still had a purpose.  I cut my hair once a year now and smile to myself every time, sure in the knowledge that one child will not have to cling quite so tightly to a much loved baseball cap.

I have never met Anthony’s parents, I’m not even sure they still live in this state, but I hope they know that their son’s short life was not lived in vain.  Because of Anthony I believe in haircuts and Walt Disney.


the pixels that make up a family

I believe that the word “family” should not be limited to those who happen to have a biological or, in the case of adoptions, legal ties to another person.  My family, those that are not biologically related to me, is a far-flung group. I have family in Virginia, Connecticut, Oregon and Utah, Colorado, Texas Shropshire, England, Lansing Michigan, and city in Turkey which I unfortunately cannot pronounce to save my life.  The amazing thing about my family, at least to me, is that I did not know the majority of them until at least the beginning of last year, with the exception of those who live in Colorado    Yet somehow in the course of one year these people have woven themselves and their lives into my heart and therefore have become part of my soul, some of the best parts I believe. To understand how my family came into being you have to understand a little bit about me and the events which have transpired over the past year.  Due to a combination of health reasons and fallout from bureaucratic political bomb shells this past spring was my last semester at a traditional four year university and that was devastating, without my family, biological or not, I would not have weathered the storm, I can almost guarantee you that.

It should be stated that just like many families, not everyone in mine is on speaking terms with each other, and some are not likely to ever meet.  What unites them as my family is that they love me for me, and do not expect me to be anyone but myself. The man, who has become something of a surrogate father figure to me at times when my own cannot be present, lives in Virginia.  From him I have learned the value of having patience with myself and he was there for me when I came home at one in the morning screaming at the unfairness of a world in which a childhood friend could suddenly be faced with life altering illness, knowing that, like me, he would now be forever defined by the things he could no longer accomplish on his own, instead of being seen for the wonderful person he is   In the conversation I remembered something that I was taught in kindergarten, it’s OK to be upset.  I believe it is okay to cry.

The other half of his heart lives in Connecticut.  To my eyes she lives her life with all the grace and steadiness that I hope to acquire some day for my own.  This past Christmas I received a photo album that I later discovered took her over a month to put together.  I believe that grace is more than a physical talent and beauty is soul deep.

My older sister lives in a small-town in Oregon.  My brother-in-law Byron, who lives in Utah, calls her his Gypsy, and Gypsy she is.  A free spirit who has seen far more than her calendar age would suggest she has never failed to make me laugh when I really need to.  My sister carries with it in her the amazing ability to make things grow and thrive, be they plants or a person’s faltering self-esteem.  I believe that sometimes the talents of nurturing plants and people are one and the same.

I love the man I consider my brother-in-law dearly.  His demeanor reminds me of a quiet stream, sure and steady in its proposed course.  A man of very careful words, his speech often takes on a lyrical quality, a fact which struck me with such force on first meeting him that I renamed him Byron and the name has stuck.  Though I have yet to meet him there are a few things I know, do not irritate anybody he considers family, and do not come between a man and his Oreos!  I believe that a person does not have to say a lot to be heard, let a person’s words be meaningful and people will quietly listen.  Occasionally contentment is manufactured by Nabisco.  I believe that too.
There are a few people in my life whose place in my life is less easily named. In saying this I do not mean to imply that these people are any less important to me, far from it.  Indeed the places these people fill are unique to them and defy conventional definitions.

Perhaps I should have said from the beginning that I met my extended family over the Internet, specifically through a computer game.  This virtual world allows the people in it to be almost anything their imagination can conjure up, it bestows physical grace o the clumsy and uncoordinated, function to those who are impaired, and literal wings to those who have always wished to fly.  My Fairy Lady has wished from the time she was small to have wings now does initially that was the reason for the nickname but as time has passed more reasons that become apparent to me.

Fairies in the old stories dispensed much valued advice when asked and sometimes not. So it is with my friend. Sometimes without even knowing it she has helped me to find the answers to questions that up until that moment were half formed in my brain. I am what most people would consider book smart but I believe that on some level a person’s intelligence is based on what they are willing to learn from the experiences of others.  Even though I am twenty four and a lot of things from my childhood no longer apply, I stand with J.M. Barrie, Peter Pan and Wendy and say without reservation, yes, I too believe in fairies.
I have noticed that in life if a person is very lucky they meet up with someone who they do not have to make space in their hearts for because it feels like that person has always been there, that in the best explanation of my relationship with the person who has become my Shadow Knight. At various points of my life I have felt very wary of other people and very scared of rejection.  My solution to this problem from the time I was in fifth grade has been to surround myself with an air of calculated indifference, pleasant indifference most of the time but indifference nonetheless.  If they wanted to pretend I didn’t exist I didn’t have to acknowledge them either. The truth was that it was meant to hide something much scarier.
Fast forward to just before I left school. I had fought depressions black undertow with varying degrees of success.  Within six weeks I discovered that a friend, whose steadfast belief in me as a worthwhile person had seen me through high school, would now face some of the same things I dealt with, and there wasn’t a thing I could do.   As if that weren’t enough my state healthcare decided that is was acceptable to ask me to discontinue my pursuit of a college degree because it was more cost effective for them.    So I did the only thing I could think to do, I bought myself a shot of virtual whiskey (the university doesn’t permit alcohol on campus) and waited in the hopes that the quiet man I had befriended a few months prior would show up, sure enough he did.  We sat and talked until 4:30 the next morning.  Ok I talked, screamed, yelled, cried and swore he mostly listened. It feels like half a lifetime has passed since that day instead of a little more than half a year.

Since then I have come to know several things, sometimes losing at chess is more fun than winning even if you do lose WAY more often than you win. If you must abandon technology for four days or more TELL SOMEBODY!  You never know how many people will worry.  Sometimes even a poet as depressing as Poe can make a person smile with joy. Knives are more than mere utilitarian objects; in some cases they can be the cords that bind people together. I believe in tea over coffee any day, even if there is sugar in it. I believe in 4 a.m. conversations even if what makes them awkward is that they’re not awkward at all. I believe in parking lots and that hugs you have to travel 520 miles to get can last a lifetime. I believe in small pieces of amber and silver and the color blue. I believe that surgery scars affect more than just the people who bear them.

I believe in patient teachers who work as grease monkeys to pay the bills.  I believe in making time for your friends no matter where in the world they live.  I believe in remembering differences between American English and the Queen’s English, it can save a lot of embarrassment. I believe in tiny stuffed tigers on key chains, and that sometimes being a mouse is not a bad thing.

I believe in arguments about Jell-O and jelly and transplanted Texans.  I believe in setting the clock on your computer to a time zone not your own.  I believe in Tweety Bird.

I believe in poets who play football, and silently cheering for a team I’ve never met in a game I ever got the chance to see. I believe that teaching English is more than teaching grammar and vocabulary.  I believe that everybody is capable of teaching even if they don’t have a degree. I believe that in helping a friend or two that I may never meet with their English I am in fact helping the world.  Who’s to say that the assistance I am able to provide now will not come back full circle?  Perhaps because of something I did a long time ago they will be able to help someone else, and maybe, just maybe I will see one of the ripples from my efforts.

Most of all I believe in telling people when they make a difference, which is what led to writing this thing.  It was never supposed to be this long, but some of the best writing advice I’ve ever gotten was to “write until it’s finished” so I have been.  When I was 14 another friend advised me “a piece of writing is never truly finished”.  I didn’t believe him then but now I do.  I’m sure the people I forgot to mention but I’m not too worried and this will most likely not be the only piece that I write for this particular purpose.  Hopefully the next one does not end up resembling a college paper, but if it does so be it, I will continue until it is finished.